KNEEtalk

The REHAB DEPARTMENT => Soft Tissue Healing Problems - Arthrofibrosis => Topic started by: missmyknee on October 12, 2007, 12:05:55 AM

Title: Open Debridement and Proximal Z-plasty
Post by: missmyknee on October 12, 2007, 12:05:55 AM
I got released from the hospital at noon after getting my last, 2 hr dose, of Vancomycin. I had the 23 hr stay. Then went over to the doc's office for PT for the rest of the afternoon.  I have all the usual modalities for scar tissue to do.....CPM, e-stem, patella mobes,etc,....doctor wants my husband to do the patella mobes on me, several times day, for 4 weeks. I am on Cipro for 2 weeks, for prophylactic infection protection. Next week I start high dose Celebrex for one week , go off one week, then back on high dose for a week. This is to try and keep inflammation down. I have to have ace compression for 1 week. Lots of icing and elevation. I am quite swollen !! I'll be doing PT 1-2 times day. My flexion was a painful 70 today.

( You can read about the surgery I had in May that led up to these events at )

http://www.kneeguru.co.uk/KNEEtalk/index.php?topic=38179.0

I have a 6 inch incision over the previous incisions. Surgery took about 2 hrs. I had open debridement for anterior, medial, infrapatellar, posterolateral, scar tissue and I also had a proximal Z-plasty , according to the doctor. If I understood this correctly, all the tight proximal tissues,medially and laterally to the patella, ( not the retinaculum ), plus some scar tissue, were resected in a Z fashion to loosen up and reattached in a single layer. We had a nice explaination, complete with drawings of how it was done, from the doc. He said I had alot of scar tissue to debride. Now we are back to keeping it from forming, with fingers crossed. I gathered from the explaination , this procedure is not done very often and given the fact  that the medical staff was learning about this procedure, along with me.

It's good to be out of the hospital and maybe get some decent sleep !! Did not get very good hospital service this time  >:(  Evening shift pretty much dropped the ball on patient care.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: skibum9 on October 12, 2007, 12:52:49 AM
Hi Pam

Glad to hear that you have been released from the hospital. Sounds like you had quite a bit if scar tissue build up since your surgery in May. What was your flexion at before this surgery?

I have the same sentiment on hospital service when I had the MUA in August. I have a more favorable opinion of the other hospital he uses.

Keep up the work at PT. I hope your husband doesn't have to give up some fishing for patella mobs.

Sharon
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on October 12, 2007, 02:11:41 AM
Pam:

Thanks for posting. I'm glad you're been sprung from the hospital and hope you can get some good sleep now. You've been through all this before, so you know how hard it is and that there will be ups and downs. Hang in there. Let's pray this is the last surgery for you!

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on October 12, 2007, 04:04:00 AM
Sharon

My flexion before surgery was about 107. I was at 120 when I was 2 weeks post-op from May's surgery. I went down hill after that. I am really sore and tender where all this z plasty took place. It is painful to make a quad contraction and to extend when trying to crutch walk. I am really swollen on the medial side. However, I no longer feel stuck down.

Hahahaha.....my husband fishes when I am on the CPM machine. He caught 5 Bass this eve. He'll get those mobes done.

Janet

Thanks for the good wishes.....that's what I need to hope this doesn't come back.  Last time I knew by 5 weeks post-op.

This gets so old to do.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on October 13, 2007, 03:19:33 AM
Today, I awoke with a temp of 99.4 and some areas of redness to knee. I have a red area the size of a 50 cent piece at the bottom of my incision and several red areas about 2 inches out medially. They thought at first it was from the polar care , but I assured them I had many layers of protection between the polar care and the skin. So they drew lines around the red areas to see if it grows larger and will continue to monitor my temp. You would think with 4 doses of IV vancomycin and also on oral Cipro for 2 weeks, infection risk would be avoided. There is slight drainage from the middle of the incision but for now appears to be straw colored.

PT consists of calf stretches
                    hamstring stretch
                    heel pumps with theraband
                    SLR, supine with 2 pound weight
                    bent leg raise on right side with pillow
                    patella mobes.....lots of them !
                    over pressure flexion
                    foam tube squeeze between legs
                    E-stem
                    Ice
                    CPM

Still very swollen. I am on 1/4 weight bearing with crutches. When the compression ace is done next week, I will be back in my Don Joy defiance brace.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on October 14, 2007, 03:11:19 PM
Oh, Pam, here's hoping you don't have an infection. That would be too much with all you've been through! Please keep us posted.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on October 14, 2007, 04:37:54 PM
Hi Janet

Yes !!!!  :o   that would be terrible......I am knocking on wood, as I write this. Infection is one thing I have not had to deal with, during any of these surgeries.

Temp seems to be in low 99s  . Still watching the redness and heat...no areas of redness have grown larger. The drainage seems to have stopped.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: ceoshea on October 14, 2007, 09:40:58 PM
Hi Pam:

I've read several of your posts and was wondering if you are from Kansas.  I'm in Wichita and flew to Cincinnati last week to see Dr. Noyes.  I was very impressed, even though I did not like the news he gave me. 
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on October 15, 2007, 02:53:30 AM
Yes, I'm from Kansas. I live about 25 miles South of KC.

I've been seeing Dr Noyes since 2004. He's done 5 surgeries on me. He's handled several complicated problems I've had, including arthrofibrosis.  I've made about 20 trips to Cinci, since I started seeing him, because I trust no one else with my knee. We usually drive, so it takes about 10 hrs.

Glad you got an opinion with him. If you decide to continue using him, you couldn't be in better hands. His PT staff is excellent. If you need any other info or where to stay, just let me know.

Pam

Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on October 15, 2007, 10:38:16 PM
I am going to PT 2x's /day this week. Today we added the ERMI flexionator ( www.ermiproducts.com ), calf raises and another theraband exercise. Normally , I really like the ERMI for flexion , but today...no. Something caused my knee to puff way out on the medial side, where he did alot of work. It ballooned out so much, I told them it looked like I had sprouted another patella, medially. I only got to a painful , tight, 90 and was also supposed to have the overpressure done for flexion, but had to stop everything after the large amount of swelling appeared. We just went directly to icing and E-stem.

Also had my steri strips changed out. I do have 2 ends of a stitch to be removed later. I was hoping I would be able to finally take a shower. I couldn't because of the drainage earlier. As the steri strip were changed, there were edges that were pulled apart enough to start bleeding, so looks like there's still no shower for now :'( :'(

Hopefully tomorrow things will be better, so I can work on my flexion.  :P   Husband's doing a great job on patella mobes   ;D

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: ceoshea on October 16, 2007, 05:57:09 AM
Hi Pam:

I am so glad to hear of your confidence in Dr. Noyes.  I thought I would be seeing him to resolve my problems with my tibia never healing and lack of extension after my ACL reconstruction nearly three years ago, but after he saw the xrays his office took and watched me walk, he told me that I have lost 50% of my joint on the medial side, that I am now bowlegged, and that I need an HTO.  He believes I am rejecting my allograft, so I'll need a biopsy first from a tumor orthopedist to rule out infection, then have the ACL removed and tunnels filled in with a bone graft from my hip (a surgery he'll do) and then in 6 months have the HTO and revision ACL reconstruction.  He said my lack of extension is the least of my problems.  I did not like to hear his diagnosis, but it's a relief to find someone who definitively knows what is going on and that it's not in my head!  No one has ever said that to me, but I start to feel that way sometimes. 

I know that I will have lots of questions about how long I should plan to be away from home, where to stay, etc.  I'm still trying to process all this information.  In the meantime, good luck with your rehab and recovery. 



Cathy
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on October 16, 2007, 10:07:43 PM
Cathy

You will be in good hands with Dr Noyes. You have alot of work ahead.

When you need some info on where to stay, etc, give me a PM and I will give you some info on short term fully furnished apartments. I am currently staying in one and stayed in one this past May for surgery. I told another kneegeek , Sharon, and she used them too. I can also provide addtional info about Cinci.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on October 16, 2007, 10:21:02 PM
Swelling is still a big issue. Trying some different modalities on e-stem for swelling and pain. Stopped doing the calf raises and back to heel pumps with thereaband. Calf raises were too painful to the lateral and medial tissues. Managed to squeak out a 96 on the ERMI. Patella mobes today produced a painful tissue "POP"   :o ......just a nice little reminder that scar tissue lurks. Doc did his rounds thru PT. He said it would take about 3 mos for the z-plasty areas to calm down.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on October 20, 2007, 02:48:39 AM
9 days post-op......finally took a shower...yipee  ;D

I am down to one more PT session on Saturday morn. Sunday I head home from Cincinnati. It will be sad to leave this excellent PT dept. I can't say enough about them.

PT protocal is essentially the same as posted earlier. I am not doing the ERMI as it causes way too much irritation and swelling to the knee so we are doing the passive overpressure flexion from the therapist, after patella mobes. Flexion is to not be pushed past 90-100 degrees, for the next couple weeks, to keep knee irritation down. The only exercise added was seated leg extension with a half foam bolster under the leg with quad contraction. I am still 25% weight bearing with crutches for several more weeks to keep irrittation down on the knee. Ted hose and compression ace till swelling is down and controlled. CPM was returned today, but still doing e-stem for quad and pain/swelling....lots of ice and elevation. Still on Celebrex for inflammation for next couple weeks. Stitches removed at 2 weeks post-op. All this is done to keep the knee irritation and inflammation down , which keeps scar tissue formation down. Pain is mostly to the medial and patella tendon and some lateral pain. Patella tendon area is a burning pain. Pain  is controlled with ice, elevation, compression and pain meds.

I start hometown PT Monday and see the doc back in Cinn in 6 weeks.  Time will tell if scar tissue returns.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on October 21, 2007, 10:26:21 PM
Pam:

As much as you hate leaving the good PTs there, I'm sure it will be good to get home. I'm glad you're well enough to make the trip. Hope things continue to go well once you're home.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on October 22, 2007, 05:29:44 AM
Hi Janet

Thank you   ;D  Yes, it is good to be home !

Made it home safe and sound, all 10 hrs......the Fall leaves thru Hoosier Nat'l forest were beautiful  ;D

I brought the power converter my kids use for their Playstation when we travel. It worked very well for my Polar care , so I iced most of the way home. Found another nifty use for my Polar care unit....while my knee was cooling down, I also had a pkg of lunchmeat, some cheese ( I didn't want to throw them away when we left) and 2 cans of soda cooling down it it too.  ;D ;D ;D

PT session on Saturday included a long session of patella mobes and hamstring massage. Patella mobes produced another POP in scar tissue, where the PT said my patella moved alot easier after that POP.   :o

Tomorrow I start hometown PT at 8 am.  :-\

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on October 23, 2007, 11:29:04 PM
Yesterday was my first PT session at home. I had to go over all the details of my therapy , with the therapist. My therapy has to be monitored closely for how my knee reacts. I am not supposed to push anything. I felt rushed on some things and the clock was being watched. Time was not a factor in Cincinnati. Patella mobes were done, but the quality was missing, as far as feeling inside the knee , the areas of catching, thickening, stiffness. Then came the passive overpressure flexion from the therapist. I had to explain several times I am to only stay between 90-100 on flexion. I was taken beyond my perameter, past 100, very painful and stiff. I am paying the price.....my knee swellled up, hot and became more painful 3 hrs after PT. Today it has not changed and it was difficult getting a shoe on. So a discussion with PT will be done tomorrow.

I also got a call from the doctor's nurse. She was asking me all sorts of questions about my knee. How the incision looked, any redness, fever, drainage. I thought this was alittle strange as I had never been questioned like that before. I found out they drew a fluid sample from my knee in surgery. The results came back and showed bacteria in the fluid. I did have some red areas and ran a low fever just days post op, but this cleared up. I also received 4 IV doses of vancomycin and was on Cipro for 10 days. Blood tests 4 weeks prior to surgery were neg for infection. I was told since it took 9-10 days to grow the bacteria out, they were leaning more to the sample being contaminated , rather than an infection. So now I am back to monitoring my temp and my incision site. I informed her of my PT session yesterday and how flexion peramemter was not followed. They were very concerned. She stated that they would prefer me to stay for a prolonged period of time in Cincinnati, to do my rehab. I would love to do that , unfortunately I cannot take that much time away from my family. I said my downfall is when I return home. She said if it continued, I need to call and have their PT call and talk to my PT.

We'll see what tomorrow brings.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on October 24, 2007, 01:35:15 AM
Pam, I am so furious at your PT! Why do they think they know better than the instructions given by the OS? And especially with a patient like you who knows more about your own knee than they could possibly know? Very frustrating. After my TKR, I had a great home PT. She listened to everything I told her about walking the line between pushing and pushing too hard. Unfortunately, one session did push harder (with my approval....really trying to get it to bend) and by the next time she came two days later, I had lost flexion and the scar tissue was growing. But she was very interested in my story and how my knee reacted. Even dealing with lots of TKR patients who needed MUAs, she had never heard any of this kind of scenario before.

I hope your knee calms down soon and your PT will listen you now. If not, call out the "big guns" and have the people in Cinci call. As you know, you need to use every tool at your disposal!

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on October 24, 2007, 02:41:19 AM
Janet

Dr Noyes nurse was not happy to hear this news and asked why they would do this with the doctor's script for PT. She was pretty mad. That's when she said they would prefer I stay in Cinci to rehab for a prolonged period of time.  I told her I went over all my rehab , I pointed out the flexion perameters and verbally repeated them several times, but this person just went ahead and pushed me beyond 100  I've been working with this PT for a long time and he knows my problem. I even copied Dr Noyes tutorial and gave it to him. I don't know how many times I have to state that I have to keep my knee calm and not flare it up with PT progressed too fast. I'm not even allowed to use any of the exercise machines for several months. As for patella mobes, in Cinci they take the time to actually feel all around the knee for areas of tighness, catching, sticking, thickening or ropelike. They don't just limit it to moving the patella around. On Saturday my mobes lasted almost 20 min because there was an area where it was sticking, that finally popped. My knee is still quite irritated this eve. This is also my week to be off the Celebrex...as they alternate taking Celebrex one week and off the next.

Tomorrow is another session and also clipping my suture ends.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: skibum9 on October 24, 2007, 03:52:56 AM
Pam-

I'm starting to feel fortunate to have found a PT (second time around) with a clue in my home down. I don't agree with all their methods (fibrotic release with sharp instrumentation, and 2 on 1 for bending). They are very careful on my lateral side they can see and feel all the wires. Most of the exercises are for strength, good thing my home program provides for balance and quad control.

I doing the 2 weeks on, 2 off, 2 weeks on with the Celebrex. Is this something you should ask the doc about?

Sharon
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on October 25, 2007, 12:36:01 AM
I am now 2 weeks post-op

Today was my 2nd PT appt at home. Monday's appointment proved to be disasterous for my knee because I was pushed beyond my flexion perameters against doctor's PT script orders.

Today had a discussion with PT. I was asked how my knee was doing and I said not good at all. I told him how my knee reacted to Monday's session with big increase in swelling , so much so, that the swelling is down into my foot, which it has never done. I also said I had increase in pain and had to hit the percosets and it was hot. I iced down all day on the polar care. He asked what did I think caused that and I said the flexion going beyond the perameters set for me. I also mentioned the doctor's office had called to check on my knee and told them about the reaction to PT. He seemed very concerned . I explained again that my PT is very specific for my arthrofibrosis. I said right now I am in a critical time period of healing and rehab. My progress is not neccessarily measured in numbers , but how my knee reacts to therapy. Progress for me would be little or no swelling,pain and heat with my rehab. I can progress to the next level when that is under control. I said even though you think I can go beyond 100, I can't on the basis that my knee is reacting to this flexion in a negative and detrimental way. I explained that when my knee becomes swollen, painful and hot, it is inflammed and that is the condition that makes it ripe for scar tissue production. I said my PT is not like anyone elses in this PT room.  What I ended up doing is, I said, I'll hold the goinometer at 100 degrees on my knee while you do the passive flexion. That way you will know when to stop. So we did it that way. The rest of the exercises were done per script.

I hope I finally got across how my PT is to be done and why it is done this way. Hopefully he understands now. So far my knee has not gotten any worse from today's session. Clipping the suture ends was unenventful.


Sharon....I think they are doing my Celebrex this way is because of my Gastritis I have from yrs of Ibuprophen use. Two weeks for me would be rough on my stomach.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on October 25, 2007, 04:29:43 AM
Cat

I sent you a PM

How are the hairy beasts doing ?   ;D  Did they miss you ?

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on October 25, 2007, 12:57:10 PM
Pam: I'm glad you were able to have a frank discussion with your PT. I hope you're right that he now "gets it." You go, girl, for sticking up for yourself! What was done can't be undone, but hopefully you won't have any problems with him in the future.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on October 27, 2007, 03:20:52 AM
Had 3rd hometown PT session today. It took 4 days for my knee to come down from Monday's PT session . That session was not done per Dr's PT orders and went beyond my flexion perameters. The swelling has finally left my foot and pain levels are down to a 5-6. After today's and Wed session, I think I finally made headway on PT's understanding of my arthrofibrosis, although you can tell he just wants to take my flexion beyond 100 degrees, but is restraining himself . This morning he could feel how hot my knee was and remarked on the heat in my knee, before he did mobes. I think he was really surprised to feel that much heat. Monday I'm getting a different compression sock. This one will provide more compression for the swelling and allow me to take off the full ace wrap. This is being done because I am supposed to be in my Donjoy Defiance brace. I can't fit it over an ace wrap.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: skibum9 on October 30, 2007, 11:10:17 PM
Hi Pam-

How is your knee doing this week? Hopefully your hometown PT is still taking it easy with the flexion.

I think I finally have my hometown PT trained not to force my knee beyond it's limits. They do all their manual stuff and then let me provide overpressure by sitting on a stool. My active flexion is up to 125 and the passive is holding steady at 130. Extension seems to be within a couple of degrees of straight, but they have only measured it once in 5 weeks.

Sharon
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on October 31, 2007, 12:13:46 AM
Hi Sharon

I think I made headway with my PT's understanding. I hold the goinometer, while he pushes...gently. I also have pushed myself with my other leg, while he holds the goinometer. I got myself to 100, without too much pain. I am on the Celebrex this week , so we'll see if it helps. I did get the new compression stocking , but don't really care for it. The compression is uncomfortable, it falls down too easy and my brace slips off of it easily, too. I think I'll go back to the white tedhose.

I also tried the recumbant bike. CSM said I could try the recumbant bike as long as I just rock back and forth..no full revolution. I thought I would do 10 min, but only did 5, because the knee swelled right before my eyes. I don't think I am ready for that yet. The medial side is the worst. There is still alot of heat in the knee which gets worse with any activity.

I did hear from J again. I also emailed Tim to give him an update . 

I go back to Cinci for a Nov 27th appointment.

You sound like you are doing well and keeping your flexion very well. Are you doing formal PT, if you are , are they doing the instrumentation ? Keep up the good work. Any word on PT/ins issues ?  I did say "HI" for you, to J.

I have PT wed and friday this week.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: skibum9 on October 31, 2007, 12:54:42 AM
Hi Pam-

Glad to hear that the PT is starting to understand. Sounds like the new compression stocking isn't working out. When I was having the skin sensitivity issues along with minor swelling several weeks after the surgery, I cut the foot off the white tedhose. It worked out pretty good since I didn't have any swelling in my foot and it made it easier to get on and off.

In general I'm doing pretty well, but pain and stiffness are still a huge issue. I'm still doing formal PT twice a week and the gym 3 to 4 time a week. I tried dropping to once a week for PT, but could tell a difference. They use the sharp instrumentation periodically. Still battling the insurance issues. The CA wildfires slowed things down since our corporate office was closed last week and folks were evacuated.

My next appointment in Cinci is on Nov 15. I hope I can get a date scheduled for the surgery to remove the wire. I can see and feel the wire on the lateral side of the patella and patella tendon. It freaks people out when I'm rubbing my knee and they ask about it. I haven't quite figure out where the wire is on the medial side.

Keep up the good work at PT.
Sharon
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on November 08, 2007, 01:53:18 AM
4 weeks post-op

I am 4 weeks post op. This week I am off the Celebrex. My knee is some what better with regards to heat....so far. I am not hot 24/7 , only when I do any activity. I walk mostly around house with 1 crutch or no crutch. I still use 2 crutches outside the house. Hopefully as the week goes on, it won't get worse because of no Celebrex. This week added some changes to PT. I am doing,

Calf stretches
Hamstring stretches
calf raises
Quad sets
long arc leg extension
SLR with 3 lb weight
SLR, right side, with 3 lb weight on thigh
Patella mobes....lots of them, several times/day
over pressure flexion, I can now get to 105, without too much trouble. Extension is 0
recumbant bike, rocking back and forth, 5-10 min
pillow squeeze
E-stem
Ice ( I use a Game Ready unit in PT, this provides icing and compression together...I love this machine)

Last week patella mobes done by husband produced another 2 scar tissue "pops" on the lateral side. Today's mobes are producing a lateral click...haven't felt that before. Still swollen and very tender to touch below patella and medially. I am still wearing compression stocking for swelling. I had 3 episodes over the weekend where I got a very , very sharp pain, just below the patella while walking. When this same pain happened after May's surgery, I was developing scar tissue.   >:(


Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on November 20, 2007, 11:16:09 PM
6 weeks post op

Not too much change in the knee at this point. I still am getting quite a bit of swelling , heat and burning pain with any activity, but not 24/7. Trying one crutch. Have been on Celebrex for anti-inflammatory and icing. Still have tissue catch on lateral side of patella. PT at this point consists of :

calf stretches
hamstring stretches
patella mobes
SLR with 3lb weight
long arc leg extension
standing hamstring curl
standing one legged balance
mini squat
recumbant bike
ERMI...felxion is about 110 with work.
e-stem
ice machine

Have next post-op check next Tuesday. Will ask about this constant deep burning pain in knee. Ice calms it a bit but it comes back. Burns all under Pat tendon and whole medial side. It drives me crazy at times. Also have some topical skin sensitivity.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on November 24, 2007, 01:05:59 PM
Pam: I also had that intense burning pain, especially in the patella tendon/fat pad area. I had to work through it at PT or I wouldn't have been able to do anything. I'm pretty sure I remember them saying it was tendonitis. It eventually went away, but I sure wish they would/could have done something to help the pain. I hope they can do something for you, since it will make your recovery easier.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: RyanPete on November 25, 2007, 03:51:47 AM
I first wanted to thank everyone for their posts.  Going through this issue is some what concerning since it is so rare.  Also, if anyone is in need of a knee surgeon and is in the central Oregon area Dr. Bollom is excellent.  Dr. Bollom has by far some of the best bed side manners and is very highly recomended by his peers. 
Anyways, I had my ACL reconstructed using my hamstring and my PCL repaired as well.  In addition I had microfracture surgery as well (all from the same injury).  Four weeks after my initial surgery my doctor decided to do debridement surgery. 
I stayed 48 hours in the hospital and had great ROM in the hospital 5 degrees to 120 degrees.  Upon release from the hospital and four days after surgery my knee is extremely tight.  My ROM is equal to that before I went in for my last debridement surgery.  I've been to rehab only once since then and will begin 3 times a week starting this week.   Did this happen to anyone else?  If so what is ahead for me?  Thanks again for all the info so far.
Ryan
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Jaci on November 25, 2007, 08:18:01 PM
Hello Ryan,

If I remember correctly, Dr. Bollom did a fellowship at Steadman Hawkins in Vail, CO a few years ago. Dr. Steadman is considered one of the experts in treating arthrofibrosis. While doing a fellowship with him is no guarantee that an OS will have been trained to treat AF, it does increase the odds that he will at least have some knowledge of the condition. (I'm not at all surprised by the statement about Dr. Bollom's bedside manner. Dr. Steadman is the same way.)

Have you found the tutorials and other info on KNEEguru's main website? Here are some links to get you there:

Dr. Millett’s article

 http://www.casebook.kneeguru.co.uk/index.php/knee/issues/arthrofibrosis_of_the_knee/  (http://www.casebook.kneeguru.co.uk/index.php/knee/issues/arthrofibrosis_of_the_knee/)

Dr. Noyes’ arthrofibrosis tutorial and Dirk Kokmeyer’s rehab tutorial

 http://www.kneeguru.co.uk/KNEEtutor/doku.php  (http://www.kneeguru.co.uk/KNEEtutor/doku.php)

KneeGuru’s literature review (look under problems with healing)

http://www.kneeguru.co.uk/insights/doku.php

Also, you may want to start your own thread; that way responses and advice to you won't get mixed up with those to Pam. Just go to the to the list of subjects for the arthrofibrosis board-- you should be able to get there by using your browsers 'back' arrow. Then look in the upper right-hand side of the border just above the list and you'll see a button "new topic," click it to open a new window that you can post your message in. The easiest thing would be to just copy and paste your message from above.


best wishes,

Jaci

Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on November 28, 2007, 03:20:46 AM
7 week post-op appointment

I had my 7 week post-op appointment today in Cinci and not the news I was wanting to hear. It turns out that the burning ,pain and tenderness is from scar tissue. Scar tissue has returned and is compressing several areas, on my nerve. The doctor found several trigger points that caused me to hit the ceiling with pain, when he pushed on them. He sure knows where to find these points. This is in a different area from the compression and resulting surgery I had in 2006 . This starts from way over from the medial side , goes across the front of the knee and below the patella. It is one of the branches  of the saphenous nerve. I got 2 cortisone shots to the knee today and I am on double dose celebrex for a week. If that doesn't help, then medrol dose pak and placed on lyrica. If I don't feel improvement, then more surgery to open the knee and remove the nerve. I am back on 2 crutches when I am out of the house. Got script for PT renewed but once again PT progression is solely based on knee reaction. My flexion today measured 107, which was not satisfactory. My PT felt the patella was a little tight. We are also going to be doing ultra sound treatments and a weekly email update to my PT in Cinci.

So the arthrofibrosis battle continues on. I never know where it will show up next and never know when it will end, if ever.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: NotEnough on November 28, 2007, 04:45:08 AM
Oh my god, I just read through all your updates and descriptions. What you're going through sounds miserable. I'm so sorry.

You must have tremendous strength to keep working at it like you have been.

I don't know how any of you do it. I read these signature lines and want to curl up in fetal position and cry. I can't imagine how hard it must be.

I hope things improve and you start seeing satisfactory results.

Title: Re: Open Debridement and Proximal Z-plasty
Post by: Jaci on November 28, 2007, 06:01:15 AM

Arrrrgh!!!!

Pam, this latest news just breaks my heart. I can't believe it.

I hope the medications resolve the problem so you don't have to go through another surgery.

I'm keeping you in my thoughts and prayers.


Jaci
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on November 28, 2007, 02:56:44 PM
Pam:

I'm SOOOO sorry this is more bad news for you. It just seems to never end. At least there is a plan of action, and hopefully you'll be able to avoid more surgery. Take it easy, girl, and try to keep your chin up.

Janet

PS: Jaci, it's good to be hearing from you again!
Title: Re: Open Debridement and Proximal Z-plasty
Post by: skibum9 on November 29, 2007, 12:37:38 AM
Pam

I can't believe scar tissue is back. You have been doing everything right with your rehab and just can't seem to catch a break. Hopefully, the meds will help get things under control.

Hang in there.

Sharon
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on November 29, 2007, 05:40:14 AM
Jaci, Janet ,Sharon and Not Enough,

Thank you very much for the kind words.....I couldn't have done anything more "right".  Once PT was straightened out, it went exactlly according to how the knee reacted, Iced, e-stemed, patella mobes, anti-inflamms, crutches, etc.  You couldn't have a more compliant patient.

This morning was a nightmare. I was awaken at 5 am with horrific pain in the knee. It was on the far medial side near the joint line and pinpointed on the nerve before it branches out across the front of my knee. It was an unrelenting sharp throbbing pain. Very painful to touch. I could not sleep, I took percosets, celebrex and used ice machine. It barely touched it. Pain levels were a 10. IF I WAS A WILD ANIMAL, I WOULD HAVE CHEWED MY LEG OFF !......it was that bad. I couldn't wait for the docs office to open. This was surgery day, so no Doc or Fellows would be there today. I talked to the head PT. They had me come right in and tried using the e-stem on the continuous current for pain. I did one 2 electrode program for 20 min with the gameready ice/compression machine on and then did a 4 electrode/cross current program, for another 20 min. After the first program , I was skeptical because I could still feel the pain , but after the second program , the pain was gone. I could not believe that this helped so much. I was delayed traveling home for several hours and even thought we might have to hold over one more day. If the pain had not cleared up with the e-stem I would have had to stay overnight. I would not have been able to travel 10 hrs in a car with that pain. The pain control from the e-stem lasted 2 hrs , it did come back, but on a more managable level. It is still very painful to touch.

Tomorrow it is back to hometown PT and explain this new problem, treament, and PT

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: skibum9 on November 30, 2007, 12:47:50 AM
Wow Pam, I hate to hear about that description of pain. I will quit complaining about mine getting to an 8 lately. When my knee pain gets to a certain point, I start clenching my teeth to the point where my jaw, neck and head hurt more than my knee. I now realize that I'm doing this when I'm awake, however, I must do it a lot when I'm asleep based on the level of pain when I wake up.

Did PT program your home stem for the pain mode so that you can do the 2 electrode or 4 electrode/cross pattern at home? They did this for mine and I have had to use it on several occasions to get the pain under control.

I really hope that this settles down soon.

Sharon
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on November 30, 2007, 02:48:59 AM
Hi Sharon

Don't ever discount the intensity of your pain....I know what you have been thru !!!!

I have a high pain threshold from 7 yrs of this crap. Very, very few times has it brought tears to my eyes ( hanging weights and pushing down, came close !!), but this time it did.

Yes, I do have the programming done to my e-stem. I plan on using it alot. I hope it is as effective as the big machines in PT. My ins pays for e-stem when I have it done in Cincinnati, but back home in KC, they don't pay for the PT e-stem , but they did pay for my home unit.

I had PT today and PT did well. He goes along with what I say I can do or need to do. We did do ultra sound today. I am extremely tender to touch and just feeling the ultra sound wand go over the affected areas, was hard to do. I am getting short periods of burning, periods of needle like sticking and throbbing. I am waiting for this cortisone to kick in esp with 2 shots.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on December 13, 2007, 03:32:48 AM
9 weeks post-op

It's now been 2 weeks since double cortisone shots and the double dose celebrex ended last Wednesday. The cortisone shots knocked the heat out of the knee, so that is good. However, the nerve pain during that time, was off and on, but not totally relieved. I've gone on to have 4 more bouts of very intense pain. The latest bout was coming on at the end of Monday's PT session and continued to get worse and worse thru the night and all day yesterday. It didn't let up til 11 pm last night. All I could do was sit and suffer. This pain is all on the medial side and goes across the front to below the patella. The pain is a mixture of horrible, sharp, never ending throbbing, intense burning and periodic sharp needle like jabs. On top of that when it flares like this, I can't stand to have anything touch it or lay on that side. Nothing really relieves it. The e-stem/TENS I use helps a little but not for long. I probably could run it all day. Pain meds don't touch it much either. Unlike the knee pain I am used to having, this nerve pain, when it happens ,is unrelenting and really wears you down quickly.

PT program at this point is:

calf stretches
hamstring stretches
patella mobes
SLR with 4lb weight
long arc leg extension with 1lb weight
standing hamstring curl with 1lb weight
standing one legged balance 20sec/x10
ball squeeze
mini squat
recumbant bike
ultra sound
e-stem/TENS
ice machine/gameready
crutches outside the house

Had just added the leg press for isometrics and the cable column the past 2 weeks, but have now stopped because of irritation to the knee causing a flare up of the nerve.


I called the doc's office . It looks like I'll either be going on Neurotin or Lyrica. I'll find out tomorrow which med it will be.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on December 14, 2007, 03:26:43 PM
Pam:

I had a similar pain in a similar spot following my TKR. My OS and pain management doctor said they would treat it like RSD, although they didn't think I actually had it....but my brain was interpreting all signals from my leg as pain. So they blasted at the pain from different angles. The narcotic pain meds, neurotin for the nerve pain at the smaller nerve level, and amitriptyline (which is an anti-depressant but it also used for pain management). I was also on a very strong anti-inflammatory. I was very "drugged," and felt it!! But the pain stayed under control....barely at times, but better than before. I hope you get this figured out. This kind of intense pain is so hard to deal with.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on December 14, 2007, 05:50:24 PM
Hi Janet

Sorry to hear you went thru such horrible nerve pain. Thanks for the pain management info. I'm glad you got relief from it, instead of continual pain. I just called the doc's office and found out I am going on Neurotin. I start with 1 pill , twice a day for 2 days, then go up to 1 pill, 3 times a day. They want to try this next. I take this also with the hydrocodones and a few more percosets I have left. I take benedryl for sleep, so I can do that too. I just finished high dose celebrex and double cortisone shots.

How did the neurotin affect you in the beginning ? Any problems with it ?

The scar tissue neuroma I had in 05-06 was very painful , but this is off the wall with pain when it flares. When it's not flared up its all the same pains , just a lower intensity. I guess it makes sense it would be worse this time since Dr located several areas along the nerve this time. I told my husband on Tuesday, during that bout of pain , that if someone stabbed my knee with a knife, it would have provided welcomed relief !!!!!

Hope the medication is ready for pickup before our snow storm.  :o   I hope I get some relief.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Jaci on December 15, 2007, 11:45:02 PM
Hello Pam,

Nerve pain is just awful. I was not diagnosed with a neuroma, but did have nerve entrapment early in my AF treatment. A pain doctor prescribed a drug called gabitril, which I've heard is similar to neurontin, it did nothing for the pain. Dr. Folk had me try Zostrix creme (it's a capsicum product) to try to 'burn out' the nerve pain. The creme really burned if I used more than a little speck of it, and it didn't seem to help the nerve pain. Lidoderm patches helped to lessen it a bit. There was another KG a while back who had good relief with Lyrica, a drug that is used for neuropathy. (Sorry I can't remember who it was.) Lyrica might be worth checking into if the neurontin doesn't help.

I hope you are getting some relief.

Take care,

Jaci
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on December 16, 2007, 04:15:12 AM
Hi Jaci

Thanks for the feedback.  ;D   I started the neurontin today and have had a pretty bad headache all day, I also went thru a period where I was losing my balance. One pill isn't enough to notice anything relief yet. I still have the burning, sensitivity. I hope I don't get any of those flare ups like I've been having. If I have to feel like this all the time on this med, then I don't think I want to take it.

Dr N did mention the Lyrica along with the neurontin. In fact, I thought it was going to be Lyrica. I guess they decided to try neurontin first. If I don't get any results or feel horrible on this, I'll call and maybe they will switch to the Lyrica. I read where they put patients with shingle nerve pain on neurontin.

I've searched thru old posts and it seems more people were NOT helped by these nerve meds than those who were helped.  :(

The zostrix creme you used sounds really strong !!!  Nerve pain is really difficult to treat. When I have the bad flare-up, it goes deep.

Thanks Jaci  ;D

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Jaci on December 16, 2007, 04:55:45 AM
Pam,

The active ingredient in Zostrix is the same stuff that makes chilli peppers hot. Zostrix acts as a counter-irritant and is supposed to desensitize the nerves. It was better in theory than in practice in my case.

I was prescribed neurontin several years ago for migraines, it did nothing for the pain and just made me completely loopy and thick-headed. The doctor kept increasing the dose and the side-effects got worse and worse. I finally just stopped taking it because I could not function at all.

I came across an interesting article that explains some of the differences between neurontin and lyrica. Here's a link:

http://www.nursingcenter.com/library/JournalArticle.asp?Article_ID=601981

(Edited in new link.)

Jaci
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on December 16, 2007, 05:18:08 AM
Hi Jaci

I can't access the link you provided. All it says is no PDF.  >:(   RATS !

I'm taking 300mg and start with 1 pill , 2 times/day for 2 days, then go up to 1 pill , 3 times/day. This is probably considered a low dose  ???

When you stopped taking it, did you wean off ? Things I've read say you need to come off it slowly, not cold turkey. How long would a person need to be on this med for nerve treatment ?

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Jaci on December 16, 2007, 05:31:08 AM
Hey Pam,

I put in a different link. See if it works. It will take you to a title page for the article, then you can select either pdf or printer friendly version.

Jaci
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Jaci on December 16, 2007, 06:08:06 AM

I think the maximum dose is 1800mg per day.

From what I remember we gradually increased the dose similar to what you're doing. I think I went up to 900-1200mg per day, I just remember my doctor kept telling me that I wasn't up to the maximum dose and that we should keep increasing it. That made no sense to me because the side-effects were really bad and I still had the migraine. I took it for a couple months and figured that was enough time to wait-and-see if it worked. I don't recall how I stopped taking it. Sorry it was quite a while ago that I used it.

Jaci
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on December 16, 2007, 06:15:09 AM
Hi Jaci

That link worked ! Thanks.   ;D

 After I read your post , I did a google search on Lyrica vs Neurontin. I found some interesting articles and some various forums discussing the switch from one med to the other. The weight gain aspect worried me too. I just lost 15 lbs I gained from taking a proton pump inhibitor for 1 1/2 yrs. Lyrica is more expensive and some have a problem getting insurance to cover it.

Here's an article I found

http://www.crpsadvisory.com/crpsa_pregabalin_vs_gabapentin.html

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on December 16, 2007, 10:15:20 PM
Pam

It's hard for me to say exactly what effects the Neurontin had on me at the beginning, since I started so many other meds at the same time, plus I was already taking Oxycontine and Oxycodone. I started the Neurontin like you did, kind of quickly to get the pain under control before my MUA....and eventually got to quite a high dose. I'd have to look back on my notes to see exactly what it was. Like I said before, I was very drugged. I felt myself "staring off into space" at the beginning and my mouth was very, very dry. As the months went on, I wasn't as loopy, but sometimes still had trouble finding the word I was looking for. The biggest problem the first few months was that I wasn't allowed to drive....in fact, I finally drove even though I shouldn't have been.  I felt okay, but looking back, I was still pretty drugged at that point.

My OS and PM doctor said it wasn't one drug by itself that was the answer, but the "cocktail" of the drugs together. Once I started feeling better, I had to wean off one med at a time. It was about 7-8 months before I was completely off everything.

Hope you get some relief!

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on December 17, 2007, 12:51:43 AM
Hi Janet

Thanks for your imput and about your experience with the Neurontin. It helps to hear other's experiences. Today was better because I did not get the bad headache this time. I noticed that after I take it, when I hit the 2-4 hour after , that is when I feel the most affects.....the loopy,unsteady feeling. After that time period I get somewhat sleepy and yawn alot. I was walking thru the room this morn and my DH said I swayed the whole way thru, like a I was drunk. lol.

Tomorrow I go on 3 pills, so I'll see how that affects me. I'm just glad there was no headache !! I think I can deal with the loopy feeling better than additional pain in my body. So far no flare ups , but still have burning and sensitivity.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: skibum9 on December 18, 2007, 12:47:38 AM
Hi Pam

I jumped straight into 3 pills/day (300 mg ea). I noticed a difference about week 2 and came off the meds at week 3. No easing in to or out of them. I didn't need to get the refill. I did feel sleepy and loopy most of the time.

I'm really hoping this works for you.

Sharon
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on December 18, 2007, 04:58:53 AM
Hi Sharon

Today started 3 pills. I got the loopy feeling once again during the 2-4 hour after taking it. Just before I took the second pill , I was extremely sleepy at sons orthodontist appt. Took the second pill and did OK, was able to fix dinner and do Christmas shopping in the eve.

You were on it 3 weeks. Was that per Dr's orders ? I wasn't told how long. I kind of assumed I was on it til my appointment in Jan.

So far no flare up but still burn, small needle jabs and a little throbbing and tender touch/sensitivity. I do not want to go thru another flare up !!

Thanks Sharon  ;D

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on December 19, 2007, 02:49:08 AM
Pam

I looked back at my journal and saw that I always felt more clear-headed in the evening. I worked up to three 300 mg at breakfast, three at lunch (then backed down to 2), and three at bedtime. As loopy as I was, and always heavy tired, it was much, much better than being in all that pain!!

My PM doctor said I was so stay on all the drugs (except the Oxycodone, which I took as needed) until I had no more pain, there wasn't anymore chance of further surgery, and my OS was happy with my progress. That took about five months....he had originally said a couple months. But we didn't want to come off and then have it flare up again.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on December 19, 2007, 04:14:10 AM
Hi Janet

Thanks for taking the time to look back in your journal. So you were on it for 5 mos. Did you go off all your meds at the same time or wean off one med at a time.  Today ,once again ,I was too loopy/drunk feeling to drive in the morn and early afternoon. I couldn't even concentrate writing on the computer....I made many mistakes. I find after the loopy feeling then I get very tired/sleepy. This stinks but so does pain, so I guess one trade off , for another. I'll have to deal with it. Sometimes my knee feels like it wants to flare up but doesn't.

I wish I had held off and started this med AFTER Christmas !!!!!!  It is difficult to finish up Christmas shopping and preparations feeling this way.   :P I have a whole turkey dinner to cook on Christmas eve, for 16 people.   :o

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on December 20, 2007, 03:37:28 PM
Pam:

I went off the meds one at a time. First was the Oxycontin, then the Neurontin, then the Amitriptylene. It took about a month to wean off each one, and another month at the end before all the meds were totally out of my system.

Be kind to yourself! Get some help with Christmas dinner. It may just be too much for you this year.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on December 20, 2007, 06:04:22 PM
Hi Janet

Thanks for the time table you went off the meds.

Hahahaha......easier said than done on the dinner thing. I have a hard time relinquishing dinner prep....I like to do it all and all from scratch. It's my treat to everyone. They do offer to help and I always say no because I really DO enjoy doing it. I will try to let some it it go to others if I feel bad. Fortunately the meal is in the eve and not the afternoon. No telling how that would go at that time of day with the loopy feeling.  :P
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on December 30, 2007, 10:53:49 PM
11 weeks post-op

I am now 11 weeks post-op and entering my 3rd week on Neurontin. I really don't like this medication, I don't like the way it makes me feel, however I have not had anymore of the horrible pain episodes. There have been times when it felt like it was going to flare up , but didn't get out of hand. The Neurontin has not helped much with the deeper burning and very tender to touch, and needle stick pain I have. I was not able to drive the first week on it . I can drive now , but have periods of extreme sleepiness. I have a very hard time waking up in the morning. since my kids are out for Christmas break, I can barely tear myself out of bed at 10 am !!! 

I don't know what is better..... to feel terrible on medication, but have no bad pain episodes, or feel more like myself and energy level, but suffer thru bad pain episodes every few days, last anywhere from a couple hours to 1-2 days.....

After speaking to my PT at CSM , we decided to go ahead and let me do my own PT at this time. I can use my rehab facility, so that works out well. This will allow me to go at a time during the day that I feel I can do, rather than try to make an appointment and not feel well enough to make it. PT program is still the same, progressing is very slow because of the knee reaction. I am still using 2 crutches with walking. Walking outside the house doing greater distance and faster pace causes an increase in the nerve symptoms.  >:(


Pam


Title: Re: Open Debridement and Proximal Z-plasty
Post by: NotEnough on December 31, 2007, 01:27:00 AM
I'm sorry to hear that you're still not feeling like yourself at all on the medication and that it's the lesser of two evils for you despite how it makes you feel.

How much longer do you plan on taking it and do you think the feeling of it will get any better? When do you go back to CSM?

I hope things start looking up for you in the new year.

Title: Re: Open Debridement and Proximal Z-plasty
Post by: kiddthekatt on December 31, 2007, 03:22:02 PM
Hi all;
   I've been reading the posts on Neurontin abd thought I would put my two cents in. After my TKR on Oct 22, 07, I started having horrible pain that ran from my lower back down my right butt all the way down the back of right leg and into my foot. I absolutely thought my leg was going to fall off. The pain was almost unbearable. I couldn't stand for my physio to touch my leg so my PT was falling way back. Because of the 3 surgeries on the knee in 7 months time, and the unbearable pain, scar tissue formed and then I had that to deal with. My OS didn't provide pain control, and so I went the first 3 weeks after the TKR taking nothing except hydocodone and that was like taking baby asperin.
   I found a pain management doctor and thank God I did. I was on the verge of a total melt down and he could see it. The first thing he did was give me a shot to give me some much needed relief from the pain, and almost instantly I was pain free. I broke down and cried like a big baby. He reviewed my medical history( I took a copy of all my surgeries right up to my last appointment with my OS) and then sat down and actualy talked to me.
   He told me that through out all of the knee surgeries, and the intensive PT that I had gone though, I had nerve damage in my op leg. He scheduled me for several test to be done, and in the mean time, he gave me lorcets 10/650s to keep the pain at a minimul until the tests results came back. I went in for the first lumbar nerve block and I felt like a human again, but it only lasted 3 days. When the pain came back, I thought I was going to explode.
   He knew that it wouldn't last forever, but he was hoping it would last longer than 3 days. The good thing about it is he knows now what he needs to do. My OS scheduled me for an MUA and I refused. I can not cope with both the after effects of the MUA and the nerve damage at the same time. My pain doc put me on a cocktail of lorcet 10/650, Neurontin 600 mg and Soma 250 mg. And I have felt like I might survive this mess.
   I asked my OS about the chances of more nerve damage by having the MUA and he wouldn't answer me. He just said that he needed to tear the mess out. Well, I just flat refused. I can accept that I might not ever be able to get more than 90 degree flex in my TKR knee, but I can not live with the nerve damage pain as it is now.
   I take my cocktail of meds 3 times a day. The Soma I take in the morning and at night. The first week I didn't think my system could handle the meds, but after that I actually feel pretty good. I do my home pt exercises 3 times a day, and ride the incumbunt bike at least twice a day.
   I ust can't go through having scar tissue removed several times a year for however long if it keeps coming back. So, I made the decision to not have the MUA and I am happy about it. I actually walked with my husband last night and we walked about a half mile down the road and then back. I was tired, but man did it feel good.
   Sorry this is so long, I do apologize, but the Neurontin seems to be helping me a great deal. I hope things start to turn around start going in your favor.

Take care
Angel
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on December 31, 2007, 05:53:30 PM
Pam:

I'm sorry you're having a hard time with the Neurontin. I totally understand. I, too, was very tired when taking it....heavy tired, like I just couldn't move, plus sleepy. You'll have to decide whether it is worth it or not. In my case, I felt it was. I just couldn't function with the amount of pain I had been in. Unfortunately, it does take time for nerves to heal. This is not something that will go away in a few weeks. Maybe talk to your doctor to see if you could try reducing the dosage and see if the level of pain relief is still okay. I was able to reduce to 600 mg in the morning and 600 at noon, keeping the 900 at bedtime.

How did you make it through your Christmas dinner? This was the first time since 1999 I have been able to bake, cook and entertain without being in tears from the pain. Here's hoping you get to that point in 2008!

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on January 01, 2008, 02:19:57 AM
Hi All

NotEnough

Yes, it is a lesser of 2 evils. My script was for 3 weeks and no refill. I will have to call to Cinci to see how to proceed with the med,,,, if it will need to be refilled or stopped. I return to Cinci Jan 24th.

Kiddthekat

Thanks for your input, which is valued at more than 2 cents  ;D   It is a hard decision as to having more surgery. At this point , I would rather have the nerve removed or decompressed, since  the problem is caused by scar tissue. I've had this before, just below the MCL. I had a neurolysis,decompression and excision of the nerve, which took care of it that time. This is in a different place on the same nerve branch and WORSE !!

Janet

I'm glad you were able to enjoy Christmas activities , painfree, for the first time in many yrs. What a good feeling that must be. I hope it continues all the time. That's the way life is supposed to be.

I did get some help for dinner and gift wrapping, which helped. We had 5 grandkids running all around and when Christmas was done and the day after came....I just crashed and slept off and on.

You certainly were on more Neurontin than me !! My gosh, if I was on that dose, it would be the night of the living dead !! I am on 300mg 3 times/day , I can't imagine going up to your dose. How could you function? I took benedryl ( doc's office said I could ) because of cold symptoms and was knocked out.

I start back to PT this week, so I hope I can stay awake  ;D

I want to wish everyone a Happy New Year  ;D ;D ;D ;D

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on January 02, 2008, 04:59:20 AM
Well the New Year rang in with a night of PAIN. I was up til dawn in horrible pain. The burning, throbbing, increasing intensities and unrelenting needle jabs. I took pain meds and benedryls to knock myself out. I finally fell asleep after it got light out and slept til about 11:15. This nerve pain is crap !!!

What a way to start 2008 off.  >:( >:( >:( >:( >:(

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on January 03, 2008, 01:19:38 AM
Pam:

It seems they should have your pain under better control. Does your OS know you are still in this incredible amount of pain? Have they considered that you have developed CRPS (is that right....used to be RSD)? That's how they were treating my pain, even though they weren't convinced that I actually had it. Please call your OS (o, I can't remember, do you have a pain management doctor?) and let him know how bad it is. I know you don't like taking all the meds, but you can't heal quickly when you are in so much pain. I'm worried about you.

As for me, my popliteal tendon is still inflamed and bothering me. Instead of another cortisone shot, I have a knee brace that prevents full extension and am going back to PT for ultrasound, ionophoresis (sp?), etc. I see my OS again in six weeks. I'm very frustrated!

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on January 03, 2008, 02:44:42 AM
Hi Janet

I called into Cinci and talked to Dr N's nurse. She wanted me to come in a soon as I could, but I can't get there any earlier than the 24th. She is talking to Noyes. They might be upping the dosage of the neurontin. It should be doing a better job. I really don't want to go into pain management. I need to be able to drive since husband goes out of town. I think a chain saw would do wonders, if and when it happens again. Nerve pain is very new to me and hard to deal with, unlike pain I've had to deal with before, nothing helps when it happens. Nothing like burning intensely, feeling like someone is jabbing you constantly in the knee below the patella and medially with a needle, ( sometimes several needles at once) all night. Dr N did mention CRPS when talking to me and the Fellow but the way my pain was , and isolated with him palpating it, it was more of scar tissue compression. that's why he mentioned possibly removing the nerve and decompressing like he did before on another area of the nerve( neuroma) in 05.

Janet, your popliteal problem sounds so identicle to the way mine started out. With the snapping , pain, not extending. It was thought the popliteal or hamstring were snapping on the prothesis. I went thru cortisone shots 2 times. When I had my ultra sound treatments done, I could feel it go over something, small, hard....PT thought at first it was a ball of scar tissue. Xrays showed that very faint, little fabella bone, was back there and that was causing the problem.It was impinging in my prothesis. Once it was removed, I had no more snapping and pain. Also had the z-plasty done to the tight IT band snapping over the prothesis edge. That did the trick too. Keep this tucked in your mind if it's still unknown why you are having problems.

I know what frustration is. I hope all you need done is the ultra sound and ionto and it will go away.

Does this ever end?

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: skibum9 on January 03, 2008, 02:53:33 AM
Hi Pam

Your chain saw comment made me chuckle. There have been many times over the past year that I thought a chain saw or even a hack saw would provide an improvement.

I hope that you can get some relief.

Sharon
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on January 03, 2008, 03:07:41 AM
Hi Sharon

You don't know how many ways I've come up with , in the middle of the night, during one of these episodes. Let's just say, Edward Scissorhands, Leatherface, Sweeny Todd, would be jealous. Ha !   ;)  :o  :o  :o  :o

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Suzabelle on January 03, 2008, 09:50:52 PM
Hi Pam,

       You've gone through so much already, it's a total drag that you're having new problems with the pain, especially under the care of Dr. Noyes.  I hope he'll find a solution soon; it's good that you'll be seeing him this month.

       Is it possible that the PT is causing the pain?  I know that sounds ridiculous, but that's what happened to me.  I was having peroneal nerve pain day and night -- so bad at night that 2-3 hours of sleep was my average, and that was with lots of meds.  I also had sharp pains laterally and a constant deep ache inside the knee.  When I stopped the PT about 4 weeks ago, the pain subsided gradually and now it's almost to zero.  Am taking no meds now and waiting to see Dr. Eakin.

       Obviously, PT is very necessary at some point for rehabbing any knee, but if PT is causing more pain overall, maybe something has to be fixed and then the PT can proceed.  I really don't know what the answer is for my knee or anyone else's, but I believe that my three different PT's were all quite professional and were doing the normal things that PT's do to rehab a knee, including:  pushing and pulling the knee in a rocking motion, agressive patellar mobs and forceful bending.  I had no idea at the time that all that action was doing more harm than good.  Yikes!

       Power to you, Pam.  You deserve the very best of care.

                      Suz
Title: Re: Open Debridement and Proximal Z-plasty
Post by: kiddthekatt on January 04, 2008, 12:34:05 AM
Hi Pam;
   So sorry to hear that you are going through that dang nerve pain. I saw my pain doctor yesterday, and then saw the Chiropracter(sp) afterwards. He worked my knee for about 45 minutes and I felt wonderful. Today, the knee is bending so much better and I have virtually no pain in the knee at all, now if I can get rid of that nerve pain in my lower back, butt cheek and right leg, I would have it made. I go in for the lumbar nerve block Monday and then on Wed. I see the Chiropracter again on Wed. I am going to have 3 sessions a week with the Chiro until I have full flex back in my knee, and not have the fear of having the MUA.
   Between these two doctors maybe they will get me back to where I can actually function again. I've dropped back on my meds, and I feel better for it. Instead of 3 times a day, I'm down to twice a day, and hopefully before long I'll be down to once and then nothing.
    Pam I hope you get relief soon, I know how badly it hurts. It's like having liquid fire running from your butt to your toes, and no way to put it out. Tak care of yourself.

Angel
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on January 04, 2008, 03:30:58 AM
Hi Suz

Thanks for your kind words of support. There were times I thought about the PT aspect. Infact, one of my longest episodes began during PT. However I did not do any PT ( not a good thing to do, I should know better) from Dec 17- Jan 2 because I couldn't drive from the neurontin for a little over a week, I had Christmas shopping, dinner and then needed to hear back from Cinci PT if I was going to have a script or do my own. After Christmas I didn't do anything because I was so tired.  But I still had no change in the symptoms and even had the bad pain on New Years eve night. So there went that theory. I started PT up today. I was hoping taking it easy would make a difference, but it didn't .  :(

I hope Dr Eakin can help you out. It would be nice to add another arthrofibrosis doc who also can do arthrofibrosis concerning a TKR, to the list. There aren't many who do. PT's don't realize when someone has AF , you can't go doing aggressive PT. That just escalates the production of scar tissue. Gentle , slow, progressing PT is what's needed.

Keep us posted on your visit.

Pam


Hi Kiddthekat

That is great news the Chiropractor got that much relief for you. As long as you see those kind of results, keep doing it !! It might keep you away from the MUA.  I hope you can get your nerve pain taken care of. I think it is very hard to get this kind of pain under control.I think patients and docs get frustrated finding the right treatments to do, because nerve pain is so erratic.

Liquid fire is a very good description !!  I hope to hear from doc's office tomorrow. Today was clinic day and back from holidays, so I'm sure it was quite busy there, today.

Thanks for the kind words. It's much appreciated.  ;D   Hope the chiropractor is the answer for your knee.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: kiddthekatt on January 04, 2008, 03:02:12 PM
Pam;
   Thank you for your encouraging words, any encouragment in these days are always welcme. This is the 2nd day after having the Chiro work on my knee and it still feels wonderful. I can see and feel a really good change. He worked my knee as a physio would have done, but he had a different way of doing it. I was always so tired after going to PT and after this session, I felt renewed. I have not used my cane nor my crutch since seeing him. Hooray!! I've been able to walk heel to toe without much of an effort at all. His plan is to massage and break away the scar tissue with the truama of a full MUA. I could feel the scar tissue break away, but the usual pain wasn't there. It felt so good, so painless. It might not work for everyone, but evidently it seems to be working in my favor for a change.
   Maybe this new year will find many of us doing better and better, since 2007 wasn't kind to us at all. I found that after going to PT, my nerve pain shot through the roof, but after my session with the Chiro, my nerve pain stayed at a manageable level. That is worth all the salt on earth!! I hope you find that much needed relief, enough is enough, and we all need to get on with our lives. I decided to do this with the Chiro and regardless of the outcome, I'm at peace with my knee and my life. And that makes a big difference in my mindset. Good luck Pam.

Angel
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Suzabelle on January 04, 2008, 06:07:42 PM
Thank you for your encouragement, Pam.

I'm glad that the PT is not hurting you.  We'll look forward to your posts after you see Dr. Noyes.  Have a safe trip.

Suz
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on January 05, 2008, 02:45:06 AM
Pam:

I'm glad you called Cinci. I hope upping the Neurontin gives you the results you need. Don't automatically assume that going into pain management would mean you can't drive. If you need to get better pain control, keep it in your back pocket as an option.

Thanks for reminding me about the fabella problem you had. Mine sounds a little different though. I have no snapping at all and no trouble extending. It is just extremely sensitive to the touch and little sore where the popliteal tendon attaches on the lateral side of the knee. It's tender enough that it is uncomfortable to sleep on that side. But it doesn't really bother me when I go about my daily living, until I move some certain way (not even sure what that is) and it gets "bothered" and hurts for a while. It's just a nagging problem, nothing really awful. The idea of the brace is to prevent full extension to put less stress on the tendon and give it a better chance to heal. Dr. Blaha thinks it is because my knees are "made"....I have a lot of natural hyperextension and my patellas point in when my toes are straight ahead, both of which put added stress on the lateral portion of the knee. He gave me more info which I won't go into here. But since this area has been sore for a year (although it's much better now than it was), he thinks it just hasn't had a chance to heal and hopes the brace and PT will help it along. He even mentioned putting in a different spacer to prevent so much extension if this continues past 18 months. I can't imagine doing that! I really am happy with my knee, but if I could be totally pain-free, I want to be!

Please don't give up on your nerve pain. Sometimes it takes some experimentation to find the proper dosage and combination of meds. And maybe the nerve will eventually heal on its own, although that can take months....not what you want to deal with.

Janet

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on January 05, 2008, 05:36:20 AM
Hi Janet

I hope the brace works out for you and prevents you having to go thru spacer exchange. That surgery isn't quite as bad as doing the TKR because there is no bone work, but it's still opening up the knee and moving things about. The hard part is preventing the scar tissue once again. I hope you can avoid this !!! If he puts in a different spacer to cut down the hyperextension, will you lose some flexion also? I've had my spacer exchanged 2 times. I originally had a size 12.5mm then went up to a 20mm and now I have a 25mm , which is the thickest spacer you can get. All from damage to all the ligaments from the dislocation and then the MCL tear.

I called back to Cinci today and won't find out til next week due to a busy clinic day yesterday and surgery today.  >:(   So I was told to just let the med run out this weekend and I'll be off it til we find out what he plans on doing next. I asked if it was ok to go off cold turkey and was told it was ok. So it's a shame I might have to go off the med and possibly be put back on next week. But he may do something different since the med wasn't providing enough relief.  :-\

So that's where it stands til next week.  I'm just waiting for the next bad flare up.  :(

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on January 05, 2008, 10:55:20 PM
Pam:

It will be interesting to see if you find any difference in the pain when you stop taking the Neurontin. Maybe you haven't been on it long enough to have to be weaned off. I'm glad they're taking your pain so seriously. Let's hope you don't get a bad flare up before this gets figured out.

I'm not sure about this brace. I think it's making my knee worse. And although it's mean to stop my full extension, I seem to have trouble working against it for my full flexion, too. And that worries me, since I'm only at 95 now. I can live with 95, but don't want any less! I still have so many questions, and that's one of them. I was at 115 at one point, so I want to make sure I don't keep losing. I am anxious for my PT appointment on Monday. I requested the same PT I worked with for this problem in the spring. While I'm there I'll talk to the brace people, too. I just don't think the braces work well for me. I've had this problem before. Because of my baja, slight as it is, the patella opening doesn't hit me in the right place when the brace is placed properly on the joint line. And my lingering soft tissue discomfort around the patella seems to be made worse by the brace, too. Like you, I get tired of nothing going smoothly and nothing being easy!

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on January 08, 2008, 01:28:45 AM
Hey Janet

How did the PT appointment go today ?

Still no word today from the office .  ???  Instead of taking 3 neurontin pills on Saturday, I took 2 pills and that made it so I had 2 pills on Sunday. None today. No major pain episodes since New Years, but still have the burning, needle jabs, tenderness and sensitivity. Did rehab today and had return of heat to the knee. Haven't felt heat since double cortisone shots at the end of Nov. I've also been noting increasing creptitis under the patella tendon.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on January 09, 2008, 11:12:31 PM
Pam:

Any word yet from Cinci? How are you doing? How's the pain?

PT has been okay. I had a long evaluation on Monday including a lot of gait evaluation. Although I think I'm walking right, I'm really not. So that may be a part of the problem, too....muscles not working correctly which leads to overcompensating in other areas. We're going to treat the pain plus try to get to the bottom of what's causing it and try to correct the root cause. They warned that this won't be done in a month, so I don't know how long to expect this to last. I am getting iontophoresis (I can never remember how to spell that word!) and we're only doing some light exercises at this point. All in all, it doesn't seem like much....but I'm much more used to heavy PT where we are working hard to build muscle.

Be thinking of me tomorrow. We are finally scheduled for trial with workers comp, and it looks like they are willing to come to an agreement first. I really don't want to go to trial, but will if their offer isn't good enough. Wish me luck!

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on January 10, 2008, 01:46:51 AM
Hi Janet

I finally heard from Cinci this afternoon, which is a good thing because I had another episode during the night on Monday. It was just shy of  full blown cut-my-leg-off pain, but bad enough to keep me up most of the night. That came on the first full day without med and going back to rehabbing.

So at 13 weeks post-op, I will now be going on Lyrica 75mg bid. We'll see if this will provide complete relief. I'll start it tomorrow.

Gait retraining is eye opening. You don't know how bad you are til you get all the little things pointed out. You don't even realize you walk incorrectly. I've had to go thru gait training almost everytime in Cinci. My PT at home does not do gait training.In Cinci they watch every little move you do and make all the corrections. Sounds like you got a good evaluation and working on the smaller things. Are you still wearing the brace ? I hope iontophoresis helps you out. Is it the kind with their machine attached or the patches you wear impregnated with the solution ?

Good luck on your WC trial tomorrow. I hope you get what you need done. I've never had to experience WC but from what I read on this forum, it seems to be a real nightmare.

Best wishes on a great outcome tomorrow.  ;D

Pam

Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on January 10, 2008, 09:09:19 PM
Hi Pam. I sure hope the Lyrica works for you. Sorry you had to have a full blown episode before you heard back from them!

Yes, I'm still wearing the brace. After getting used to it for a few days, I think it's helping. I get the ionto patches to wear home. The first one was 24-hour but didn't stick well, so last time they used a 6-hour one and that stayed better. Other than that, not doing much in PT. Doesn't seem worth my time, actually. But I know they'll add to it gradually.

We came to a resolution with the WC people today without going to trial. Yea! Nothing has been signed and there are still a couple items to work through (including one rather big one), but they have agreed that they should have paid for everything all the way back to when they stopped paying in 2003 (when I wanted to see Dr. Wojtys). They will also start immediately paying for all my current treatments and future treatments. So I've won! I feel so vindicated. There was never any question that this was a work-related injury or that my continued treatments were from the injury. They just got doctors to say they didn't think any other treatment would help, so they said they didn't have to pay. Now they have to repay my out-of-pocket expenses, mileage, and repay my insurance company. I sure could have been spared a lot of stressful times (at one point I thought I might have a nervous breakdown) if they had just done what they were supposed to do from the start!

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on January 10, 2008, 10:13:05 PM
Hi Janet

I've only taken one pill so far, so I can't tell anything yet. However it's woozy affects have made it so I can't drive AGAIN. I was a total couch potato today. I hope it wears off so I can take my son to his hockey game this eve !!!

What brace are you wearing ? I have to wear a Donjoy Defiance, it's one of those custom , open, carbon fiber ones, so I don't really feel I have one on. It took some time to get used to the openess of it. I was used to alot of neoprene on a brace prior to this. I've used the AIR Donjoy and then the DJ playmaker before the custom brace. Before the TKR , I wore the Breg PTO


Hoorah !!  Congrats on the outcome from your WC trial. I am sure you are glad that is over with. I can understand the feeling ....been thru a similar legal situation. Enjoy the vindication and knowing your current and future treatments will be payed for. How does that work ? Do they send the bills directly to WC or do the reimburse you ?

With the trial behind you, now you can move forward with that weight off your shoulders  ;D


Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on January 13, 2008, 01:11:07 AM
Pam:

So were you able to drive later in the day? I've never taken Lyrica, so didn't know it would make you woozy. Hopefully your body will adjust in a few days or so. And now can you tell a difference in the pain?

My brace is a Breg Roadrunner. It is a mesh sleeve with bars on the sides and dials to set the extension deficit. Mine is locked at 10 degrees extension, which means about 15 or so for me because I have so much hyperextension. The side bars seem to help too, keeping the knee from collapsing "in" too much. But now the burning pain on the top of my foot is worse. One fix just leads to another problem! That's what I get so tired of!

WC will pay just like any other health insurance. They'll be billed, allowing a certain amount for each item. The difference is that the patient cannot be charged for anything and they don't have limits on how much treatment you can get (like no limit of the number of PT visits per year). I also get mileage reimbursement (which adds up when I travel 75 miles round trip for PT three times a week). Basically, with WC the patient should have NO out of pocket costs at all.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on January 14, 2008, 07:50:15 PM
Hi Janet

Yes, I was able to drive son to hockey, things wore off enough by evening, to do it. Had to skip Sunday dose because I had to drive to daughter's fashion show.  :P

So far this med has almost same symptoms. I have the woozy feeling ,can't drive, walking unsteady at times, sleepy, prolonged headache and throbbing in head And some heart palps, which I already take meds for that and don't need.  >:(  I'm trying to keep the med going so I can see if the symptoms will eventually go away. I might have to decide once again if the med is worth the side effects or just have the pain and not take the med. I just don't like the way I feel.....it's like feeling ill all the time.  >:(

As far as if it helps......... it is doing a little better than the neurontin. I have not had any big pain episodes but still have the burning,needle jabs and tenderness, at a lesser level of pain than what the neurontin provided.


My brace was put at a 10 degree extension lock. They don't want any hyperextension in my knee because of all the posterolateral work that has been done.

Hope your therapy sessions show improvement for you  ;D

Pam

Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on January 16, 2008, 03:04:27 AM
Pam:

As I remember, it took me several weeks to get used to all the meds. At least, I felt like I could function, but always very tired....heavy, fatigue kind of tired. And while I felt like my head was pretty clear, it wasn't. I started driving after a couple of months, but even then I shouldn't have been. Of course, I was on more kinds of meds and at higher doses than you right now, but still. It was sure a lifestyle change!

My knee is about the same. I feel more confident in my PT now, though. It's the same guy I worked with last spring (for basically the same thing), so he understands my knee better. I thought he was on vacation last week, but it turns out his wife had twins! He said he had two hours of sleep last night. Poor guy, but exciting for him, too. Anyway, I don't really expect any big change after just a week of PT. But I'm frustrated because I've had to give up riding my exercise bike and walking for exercise for now since both irritate that tendon. Grrr.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on January 18, 2008, 01:23:19 AM
14 weeks post-op

I have now been on the Lyrica 8 days. The side effects don't seem to want to abate....I'm still waiting ! I cannot drive starting at 1 hour after taking the med and for several hours ( all morn and afternoon) I also have blurred vision, headaches, loss of concentration and memory loss and constipation !

So far I still have all the same problems just at a lesser intensity. I think I might have gone thru another flare-up yesterday, only at a lesser level of pain. The knee definitely became more sensitive, burned, throbbed and needle jabbed all day long, more than the other days. I think if I wasn't on the med, I would have had a full blown horrible pain episode.

I just wish it would totally go away. The daily 24/7 pain and burning is wearing.  :'(

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on January 18, 2008, 01:31:59 AM
Pam:

I'm glad the Lyrica seems to have lessened the effect of your "attack," but so sorry you are having such side effects from it. I guess it will be up to you to weigh the pros/cons. But I agree, that pain is sure draining, and I hope it gets better. Have you talked to Cinci about your side effects and that you're still having pain? (Although even with all the meds I was on, I continued to have pain....it was just "barely tolerable," which was an improvement.) Do you have something else you can take during one of your attacks? Maybe they need to come at this from more than one angle??

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: NotEnough on January 18, 2008, 03:27:22 AM
Pam,

Those side effects sound very disturbing. Reading them made me feel like I was watching one of those medicine commercials where they show a happy couple having a picnic, or a some kids running through a field of daisies, and then they rattle off the side effects and say "ask your doctor about Lyrica." No way! How much longer are you going to continue with it?

What do you see in the future? Has CSM given you any indication of what to expect?

Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on January 23, 2008, 02:43:32 AM
I head out tomorrow for Cincinnati for Thursday appointment, PT and PT Friday.

I took my last dose of Lyrica on Sunday. 11 days was enough, plus 3 weeks of Neurontin. My husband went out of town Monday and Today til tonight. I needed the ability to drive. The lack of concentration and memory was getting worse. I just can't function on that level, so I will opt for pain. Even 2 days later, I still feel effects with memory loss and concentration. I nearly forgot to take the dogs to the kennel. I was in a fog at the grocery check out. I am normally very organized.  :o

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on January 23, 2008, 08:40:03 AM
Well it's 2:30 am and no sleep for a second night. Fell asleep at 5:50 am yesterday only to wake up with alarm for kid's school day at 6:20. Did a little searching about Lyrica withdrawl effects since I stopped it and came across this : Read pages 6,7,8

http://www.medicalnewstoday.com/youropinions.php?opinionid=12046&p=5

Read several pages and what an eye opener.  :o   I'm glad I stopped when I did. The effects from the med were bad enough for 11 days worth of medication, much less if I managed to live in a fog and not remember for longer period to try and stick it out.

God bless those who have no choice....for now I'll take the pain

Pam


Title: Re: Open Debridement and Proximal Z-plasty
Post by: cat on January 23, 2008, 11:44:11 PM
Gosh, Pam,
I'm sorry to hear you're having sleepless nights on top of everything else. Hope your trip to Cinn goes well.
 ;D cat  ;D
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on January 24, 2008, 12:32:12 AM
Pam:

I'm glad you stopped the Lyrica if your side effects were getting worse. But I'm really sorry that you have to live with the pain instead. I hope they have another answer for you once you talk to Dr. Noyes face to face. Please drive home the point that you need pain relief that still allows you to function! I don't know if there is such a thing for your level of pain, but push, push, push.

Why aren't you sleeping? Is it because of the pain? Or are you now having withdrawal symptoms on top of everything else?

Good luck with your appointment. I'll be anxious to hear how it went.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on January 24, 2008, 03:25:26 AM
Hi Cat and Janet

Thanks for the good wishes in Cinci....we arrived at 9:30.

The last 2 nights have been the pits. I was experiencing withdrawl symptoms, on top of that I came down with a UTI and was put on Cipro on Saturday. These 2 meds have almost identical side effects. The Cipro absolutely tore my stomach up. So on top of the insomnia, increase HR, can't sit still, sound sensitive, concentrate,jittery, headache and eye jitters, withdrawl, my stomach was hurting and churning. I got 2 hours sleep total last night, for a grand total of 4-5 for 2 days. Getting ready for the trip this am was a nightmare. I was so sick to my stomach, breaking out in sweats. I threw up before I left, took temp and was OK. We continued on and I threw up again an hour into the trip. I was going to go back home and cancel but decided to try and go a little further to see if I felt better. I didn't throw up the rest of the trip. I also stopped taking the Cipro. I will need to call PCP to get a different antibiotic. I had told the on call doc that I had atrial fib and a prolonged QT interval. This means I can't take certain meds that can prolong this part of the heart rhythm even longer which can have deadly results. I take heart meds for this. I looked Cipro up on the long QT drug list and it is listed, so I can't take it. So glad the doc and pharmacy forgot to check this one little major detail.

Can it get any better than this ? Oh yes it can....I also have come down with a cold.  Since I've been off the Lyrica, I can feel an increase in the burning, sensitivity and needle jabs, but so far no out of hand episodes. 

I hope I can can some sleep tonight and hopefully the worst is over.

This is my sad pathetic story  :'(

Pam

Title: Re: Open Debridement and Proximal Z-plasty
Post by: skibum9 on January 24, 2008, 03:32:34 AM
Hi Pam

I'm really sorry that you are having to go through all this. Hopefully the doc will be able to provide some relief.

See you tomorrow.

Sharon
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on January 25, 2008, 12:17:39 AM
Pam:

This is ridiculous! You just can't cut a break, can you? I wish there was something else to say besides "I'm sorry you're going through this." But I am....sorry, that is.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on January 25, 2008, 04:19:18 AM
Hi Janet and Sharon

Sharon-  It was great seeing you today and getting together for dinner. You've come a long way !  Have a safe trip home  ;D

Janet-   24 hours can make a big difference. I feel a whole lot better today. I actually slept thru the night. I feel much more clear headed and my stomach is back to normal since stopping the Cipro. I was so sick yesterday morn... YUK  :P  I only needed to take some benedryl for my cold and some airborne. I let it be known what I thought of the Lyrica at my appointment !!!  How are you doing ?

15 weeks post-op

I saw the doc today. He has decided to try one last treatment before removing the nerve. He explained that removing nerves is not something to go into lightly, even though I had it done 2 yrs ago.I said after all this pain and going thru 9 horrible pain episodes, 2 cortisone shots and nasty nerve drugs,  I was ready to remove the nerve myself !!!  This time it involves a larger area whereas the other time it was very pinpoint, so you want to make sure you know exactly where the nerve needs to be removed and don't want to stir up other nerves. We located 2 painful spots on the nerve to place lidocaine blocks. The first block was done on the far medial side about 1/2 inch in, along the joint line, then we waited for about 30 min to see how much pain relief I had. I still had some burning just below the patella and around the medial side of it. So the next block was put in around the medial side of the patella, for that branch. That took care of the remainder of the burning. It was so nice to be numb. I wish I could take the lidocaine home. He then gave me a cortisone shot in between the 2 blocks, so as to cover both nerves.. He is hoping I will see improvement and the nerve calm down. If not then he will remove the nerve. I am supposed to go back in 2-4 weeks but will have to go longer because of husbands travel schedule.

I also went down for PT which consisted of very light exercises: calf stretches, hamstring stretch, SLRs, Long arc extension, heel pump with theraband and ERMI. My flexion was 115. They also did ultra sound, etem and iceman . I go back for PT tomorrow and then home on Saturday.

Tonight I can feel some of the numbing is beginning to wear off, as some of the needle jab pain is starting up. My knee is quite swollen

Time will tell if this helps

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on January 27, 2008, 12:14:33 AM
Pam:

I'm glad he was able to pinpoint the nerves with the lidocaine. It must be wonderful to have pain relief, even if it's just for a while. Hopefully once your knee calms down from the injections, the cortisone will give you some measure of relief, too. I'm sure you're not looking forward to more surgery. Well, maybe you are, if it will take care of this once and for all! But I'll keep my fingers crossed that the nerve calms down enough to give it more time to heal.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on January 28, 2008, 08:25:15 PM
It's now been 4 days since having 2 nerve blocks and cortisone. I wish I could report that this was a great success but so far, NO. I would imagine the cortisone would have kicked in by now. If anything , it is worse. After the numbness wore off the nerve symptoms returned, only now it covers all the way over to the medial side of my knee. I can't even stand wearing my leg brace and have it touch the inside knee.. I can't lay on that side it hurts so much. I am also so bruised from the injections. These were large shots to do the blocks. Tomorrow starts another round of scripted PT.

This is very discouraging.  :(

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: QBknee on January 29, 2008, 03:46:01 AM
Pam,

Sorry to hear this complex nerve issue is still lingering.  Hopefully these injections start to calm things down.  Stay strong!  Sorry I have been out of the loop.

It seems if you can get the nerve issue under control you will be able to really focus better on your PT and be much more comfortable and really improve on your motion and strength.  Hang in there, and if it takes one more procedure, you can do it! Hopefully these nerves will turn off completely and the pain goes away without another procedure!

Dan

Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on January 31, 2008, 09:08:33 PM
Pam:

Have you had any further relief? I know after my cortisone shots it always takes about a week before I get over the pain of the injection and start to feel any relief.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on February 01, 2008, 02:18:21 AM
Hi Dan and Janet

Dan

So nice to hear from you, I haven't heard from you in a long time. Thanks for your words of encouragement. It's been rough with nerve pain. I'm trying to stay hopeful , but it is diffficult.


Janet

It's now been 1 week since the blocks and cortisone. You should see my knee, quite black and blue on the medial side from the injections. I really don't see much improvement to jump up and down about. In fact, I have a new area to get used to burning... the whole far medial side with burning and needle jabs. It is all very erratic, the burning, needle jabs, sharp throbbing, and sensitivity, sometimes the needle jabs are so sharp and sudden , they make me wince. So if the cortisone is going to do something, it better kick in now. I've just been taking the hydrocodones for pain for what it's worth. I also do the TENS.

I started back to scripted PT this week going 2x's/week. We have been doing very basic stretches, SLR, quad sets, calf raises. Then do ultra sound and gameready/vaso compression. Cinci PT had suggested doing the gameready first then the ultra sound so the gameready would numb the knee up before the ultra sound. We did that Tuesday and I had terrible burning on the way home so today I said I would prefer to do ultra sound first then numb up with game ready. Patella mobes and ultra sound were painful when he touched certain areas..... I had to keep telling him to adjust the pressure or move to a different spot.

I did get a copy of my office notes from last week. It says they plan on doing an open neurectomy if the cortisone does not work.

How is your therapy going ? Have you seen any improvement ?

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on February 01, 2008, 01:48:16 PM
Pam:

So sorry. I was really hoping the cortisone would kick in, but I wasn't holding my breath. I'm not sure what "gameready" is. I know I've heard of it before, but can't remember.

I think PT is helping, but it's very slow. Of course, this has been going on for over a year, so it's not going to go away overnight. The brace has helped the soreness on the lateral side of my knee. The hamstring tendon in back is still sore, and it doesn't quite fit the pattern of what they would expect. So we wonder if there is some scar tissue adhering the tendon or under it that is keeping it irritated. I had mentioned to my OS that there is also a sore area immediately to the medial side of the patella tendon. He didn't seem concerned. Now PT has isolated that it gets irritated and more sore when I do pushing exercises....like the NuStep, leg press, etc....so we have to be very careful not to do much weight/resistance on those. When I bend my knee, I can see a ball (presumably scar tissue) right there. If I press it, it sends nerve tingling through that area. This is the area that is bothering me the most right now. So at least we've isolated the area and I'll see what the OS says about it now. My knee gets quite uncomfortable during the night and is always sore when I wake up. Feels better once I put the brace back on. I see my OS again on Feb. 13.

I'm a little bummed because my PT is going away for two months to finish another certification. They work in teams, so I have other people I can see. But I've worked with Eric through two courses of PT and he understands my knee. Today was supposed to be my last visit with him, but we've had a major snowstorm and I can't make the 70 mile trip for PT. I'm assuming I won't still be in PT by the time he returns!!

So all in all my knee is somewhat better, BUT I'm still wearing the brace and I've stopped all my exercise, and I still have discomfort. I don't want to get into any major treatments (like more surgery), but it would be really nice to get rid of these nagging issues! But I don't have anywhere near the kind of pain you're talking about.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on February 05, 2008, 02:47:36 AM
Hi Janet

The Gameready is an ice machine that provides cooling and vaso compression. It looks like a blood pressure cuff that goes from thigh to mid calf. It provides excellent icing and controlled compression. I love it. Here's what it looks like

http://www.gameready.com/products/images/HeroKnee_4936.jpg

I'm sorry to hear about the new developement of the medial patella tendon pain. That sounds ominous for scar tissue or even a neuroma, since you get the nerve involvement when you press it. Is is very painful when you push on it ?

I know Feb 13th can't come soone enough for you to have your doc re-evaluate what is going on. That lateral/ posterolateral side is so full of many different structures, sometimes it's hard to pinpoint what is causing the problem unless it is surgically explored. That might be your only option to find out the cause and solution.

Still no change in my knee. Just all sorts of bizarre , erratic burning, needle jabs and sharp throbbing.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on February 06, 2008, 12:56:44 AM
Pam:

Thanks for the photo of the Gameready. I haven't seen that, so my PT facility must not use it. Sorry you haven't had any change. Frustrating and disappointing (and painful), I know.

When I push on the medial area, it sends a nerve jolt through the knee. So it's probably a neuroma, or a nerve caught in scar tissue (are they the same thing?). Today we tried ultrasound in that area, so we'll have to see if a few treatments make any difference. I think one reason it is hurting more is that the fabric of the brace rubs across there....not hard, but just enough to irritate it. Everything is so complicated...something helps one area but irritates another. Like Dr. Blaha said, unfortunately, knees don't come with an owner's manual!

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on February 06, 2008, 01:42:15 AM
Hi Janet

A neuroma is a nerve with a ball of scar tissue around it. The nerve is traumatized and scar tissue forms and compresses, then errant nerve fibers grow out and twist around with the scar tissue to form a ball or nodule. Very point tender, very painful. When Noyes palpated it, I hit the ceiling with pain. I had that one removed in 06. They can form along the saphenous nerve and the infrapatellar branch of the saphenous nerve which extends across the front of the knee from the medial side Literature out there says that nerve entrapment problems such as compression, neuromas are an often overlooked cause of anterior, anteromedial knee pain.

I hope the ultra sound helps out. I have not noticed any help yet with my US treatments. I can barely tolerate the ultra sound wand going over my knee.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on February 07, 2008, 02:59:04 PM
I won't be surprised if Dr. Blaha gives me a cortisone shot in the medial area...he mentioned it once before. It's interesting that through PT we've been able to somewhat isolate the things that make different areas sore. The brace has helped the pain on the lateral side of the knee. More posteriorly, it hurts when I flex (the hamstring tendon). But it also gets sore when I put weight on it with a straight or almost straight leg. The medial side gets very irritated with weight on a bent knee...even a slight bend. I think this information will be helpful to Dr. B as we try to figure out exactly what is going on.

When do you go back to Cinci (or talk to them) again? Sorry nothing seems to be helping. When you say you can barely tolerate the US, how does it feel? I get a lot of uncomfortable nerve tingling if they pass it over the patella tendon itself, so we make sure to keep it medially.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on February 07, 2008, 07:38:08 PM
Hi Janet

That is good you and your PT are getting things isolated. It will help you give your OS a more precise description and area where you are having trouble. I always find it nerve racking just before an appointment, when you know how you describe your problem, can have an impact on your exam. Dr Noyes is really good on knowing by my descriptions and doing his exam to identify and pinpoint the problem. My past OS was not.... if I didn't "capture" his attention in the first 20 sec of the appointment , then it was a lost cause. Sounds like the brace is very beneficial for you.

I go back to Cinci for a March 18th appointment. My kids will be on Spring Break and will come along. We plan on staying at the Great Wolf Lodge Resort and indoor water park. They did that last Spring Break and had a good time while I was at the doctor. Most people go somewhere interesting for Spring break...... we go to Cincinnati  :P  I do keep in contact with my Cinci PT thru email. He wants me to give him a weekly update and he will adjust my PT thru email.

When the US wand goes over my problem area, it is very tender to touch and hyper sensitive, so it just accentuates those symptoms even more.

Pam


Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on February 13, 2008, 10:01:17 PM
18 weeks post op

After sending a progress report or rather a lack-of-progress report and trying everything with TENS, cortisone shots, nerve blocks, nerve medications x2,ultra sound, anti-inflammatories, I still have continued nerve pain, needle jabs, sensitivity, throbbing and burning. I was just informed today, that I need to schedule surgery. So it looks like I won't be going back for appt in March, but scheduling nerve surgery instead. I'm glad they told me now, so I didn't spend money on another trip back just to be told the same thing.  :o

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: NotEnough on February 13, 2008, 10:46:42 PM
Pam,

Sorry that you're headed for more surgery. I hope it brings you a healthier, less painful, and more functional knee. I'm keeping my fingers crossed for you.

Sarah
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on February 14, 2008, 03:24:33 PM
Pam:

Sorry it had to come to this, but you're probably glad to finally have an answer. There goes your wonderful spring break trip to Cinci!! Any idea when your surgery will be? What exactly does it entail? How long will you have to be in the hospital and stay in Cinci?

I saw my OS yesterday and he said I am the only person he has ever had in over 1000 surgeries with this prosthesis who has the problem I'm having behind the knee. He's had two other patients with similar problems after a revision. Great! Anyway, the next thing we're going to try is an ultrasound guided cortisone injection into the biceps femoris tendon. He wants to make sure the large nerve there isn't touched. I agree with that!! He said if that works, he'd be willing to have these injections even every four months in order to avoid any further surgery. I also agree with that. Again he said it's from the way my knee is "made," far outside the bell curve of "normal," and the available prostheses don't address it.

Interestingly, the resident I saw first said something about that I might just have to live with this. I understand that. Then Dr. B came in and said, "So you're not satisfied." I said that wasn't really it....it's so much better than before the surgery. Then he said, "Well, I'm not satisfied." I really appreciated that. I don't want to "settle" either, but wasn't sure if my complaints were really worth it or if I was being unrealistic or "whiny." So I feel like I'm being taken seriously (even though this isn't major pain). It really isn't asking too much to be able to take a walk or ride my exercise bike without pain, is it? Oh, and I'm not going to PT anymore because he doesn't think it's helping. Now I just have to wait for the radiology department to schedule the US, then see Dr. B four weeks later.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on February 14, 2008, 10:54:11 PM
Hi Janet

I don't know the specifics of the surgery yet. I'll have to call them tomorrow. Today was clinic day and it is always busy on that day. My kids were looking forward to their Spring Break trip, now I'll have to think of something else  ::)


Wow, ultra sound guided needle work ! Aren't you glad to be 1 in 1000 ? It just goes along with the AF, patella baja and IPCS as being the 1%. (I have fallen in the 1% group for every problem I have had on this knee/leg.) It sounds like it has to be really precise. I hope that works out and solves the pain problem or keeps it down. I don't think you are unreasonable or whinny about the activities you would like to do. I rode my mountain bike when I was 4 mos post-op TKR . I was riding 6 miles but the snapping and pain, which turned out to be from the fabella bone back there, was so bad, I had to give it up. I haven't ridden since.  :(  My TKR was in Jan 05.

This particular surgery I am looking forward to, so I can get some relief from this pain ! Keep me posted on your injection. I hope it works out well.

Pam


Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on February 15, 2008, 04:30:38 PM
Pam:

I agree. I get tired of hearing things like "I've never seen this before." I was telling one of my friends about my long odds, and they said, "Why does that not surprise me?" All I can do is laugh about it...and know that I definitely caught Dr. B's attention!

Let me know about your surgery.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on February 16, 2008, 04:31:57 AM
Janet

I got my surgery scheduled today. It will be April 2nd. I tried to get it booked for March 19, during Spring Break, since we were booked for hotel and dog kennels anyway, but his schedule was full that day.  I will only need to be in Cinci 1 week, so that is nice . I won't know exactly how he will do it until my appointment the day before surgery. I know one time he said he would open part of the knee up where the neuroma is at.

 I found an interesting chapter about neuromas of the knee from the book, Anterior Knee Pain and Patellar Instability. It is from chapter 23.There are some good diagrams of the nerves to the anterior knee. If you page up to chapter 22, they talk about arthrofibrosis and patella infera.

http://books.google.com/books?hl=en&lr=&id=MxMfcAvPitQC&oi=fnd&pg=RA2-PA363&dq=neuroma+excision+of+the+infrapatellar+nerve&ots=lSTtP0166M&sig=CO0uO6zzIySUCt_mcW3sOgw_tWs#PRA2-PA363,M1

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on February 17, 2008, 08:18:54 PM
Pam:

Thanks for the link to the book. Very interesting. Besides trying learn all about my knee stuff, in general I find medical things fascinating.

Sorry you couldn't get the surgery date you wanted. March 19 would have been sooner too. Will you try to find something fun to do with your kids during the break? How old are they?

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Jaci on February 20, 2008, 04:54:24 AM
Hello Pam,

Thanks for posting that link. Too bad it doesn't let you read the entire chapter; I guess that would defeat the purpose of letting people 'preview' the book. It would be interesting to read the entire chapter, but I can't see spending $199 for a medical text. It's good to see that there actually is info on arthrofibrosis in medical text books. Who knows how much (or how little) attention it is actually given during an OS training though?

I imagine you have to be relieved that relief from the horrible nerve pain is in sight. I hope the surgery isn't too invasive and that recovery goes smoothly. Can Dr. Noyes do anything for you in the mean time to help with the pain?

Take care,

Jaci
 
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on February 20, 2008, 09:50:39 PM
Hi Ladies

Janet

You won't believe this but do to the late date and arrangements already made for lodging, kennels, activites, etc, we are still going to Cinci. I know pretty stupid, huh !   ::)   Kids like going there .  I contacted Cinci PT. They said to come do 2 sessions , so I'll go do my PT an maybe find out more about surgery details.

Jaci

Yea, the link isn't working for me right now. If you go to it and click " Preview Book" on top ,then page down to chapter 23, you can see additional pages on the subject. I think about 5 pages worth, will appear. Those pages give sufficient info on neuromas and some pics.  Those few pages gave more info than I could find with only abstracts to look at.

Right now I am just taking my usual meds, a few percosets I had left from past surgery and hydrocodones and icing ( icing helps with the burning part). It doesn't do much at all for this pain but better than nothing. I don't want anything that makes me too drugged. Never want to take Lyrica again !!!!!  Mostly I just endure it, now going on 5 months of it. I will be glad to get this done, I hope he makes it all numb. I can tolerate numbness, I've had that on the right side for 7 yrs. This constant erratic nerve pain , NO !

 I've also been feeling tightness in the tissues there for a couple weeks now, like tape pulling across and crepitis has been getting more pronounced on my tendon....hmmmmmm more scar tissue ? Patella still moves. What do you think ?

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on February 26, 2008, 02:29:45 AM
Pam:

Sorry I didn't answer you earlier! So you're vacationing in Cinci  ;D What will you do? At least you'll get to join in the fun instead of them "funning" while you're recovering. (I hope you're up to it!) Will they all come back with you for your April 2 surgery? How's that tightness and crepitus you were talking about? Any better? Worse?

I had my ultrasound-guided injection today. It was interesting to see the tendons and nerves on the monitor. I have a pretty good bruise there now and it is pretty sore. There was a lot of discussion about the best place to put the injection to get it in the painful area without hitting anything bad. The injection sites are exactly where it hurts, so I hope they put the needle tip closer to the area. It's hard to tell once they have you all numbed up. I iced this evening and that helped. We'll see what the next couple of days brings. I sure hope this works, as I'm afraid we may be running out of options.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on February 26, 2008, 09:33:11 PM
Hi Janet

That must have been really interesting to watch as they did your guided needle work ! I hope this helps you out since it sounds like they got the injection right where it was hurting. Did they say what exact structure they were treating....name the ligament,nerve, etc ? Feel any different today ? Did they mention what they would do next if this didn't help ?

The kids will do the water park while I do PT each day and in the eves. We are only going to be there for 3 days then leave the 4th day. My daughter wanted to check certain stores in Cinci, for a prom dress. We will probably go to the Aquarium, Newport, Hoffbrauhous, drive up to Columbus . Unfortunately it was just too late to cancel things and make reservations somewhere more exotic, drivable, and WARM !

The tightness and crepitis is something I have been watching for a couple months now. The tightness covers all the tissue below the patella and medially from there, following where all the nerve pain is. It feels like there is tape stretched across there. The crepitis started out feeling very fine and barely noticable, now it is becoming coarser and more noticeable with feel and movement. When I am there for PT I will ask them to check it and see if it is something concerning.....Maybe Noyes or the Fellow will be passing thru on rounds and give a quick check.

I'm flying out to California for daughter's college tour and wonder how it will be using crutches thru the whole air travel experience. I've traveled without crutches and already have been thru the pat down, wanding and show and tell my knee experience.

Hope you see improvement from the injections  ;D

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on February 27, 2008, 09:16:36 PM
Pam:

They were treating the biceps femoris tendon where it goes behind the knee and crosses with the popliteal tendon and peroneal nerve. It felt great yesterday...very little if any pain in that area, still a little on the lateral side. I may have done a little too much yesterday, though, because today it's a little more sore. I'm also a little sore behind the knee because I haven't really been fully extending my leg for the last eight weeks. It does feel good to get the brace off, although I've gotten so used to it it didn't bother me anymore. That tight medial area is still sore, so as long as the back area continues with its improvement, this will be the next area I ask about. I keep mentioning it at every appointment, but they are always more interested in the back!

I'm glad you'll get to check in with the PT while in Cinci. Too bad you won't be spending your time on a beach, though!

Have fun on your college tour, although I'm sure you're anxious about how you'll be able to get around. We did this with our daughter right after my surgery with Dr. W. I couldn't take any of the tours because I couldn't keep up with the group or walk that far. We did get someone to take us on a private tour of a dorm, though, so I could see what the rooms looked like. As for the airport...get a wheelchair! I have used one in airports for years. You may even be able to ask for one at the college. People are really accommodating as far as possible. Good luck and have fun!

Janet

Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on March 02, 2008, 05:23:05 AM
I am back from California tonight. What a busy 3 days and almost non stop on the crutches. My trip started out on a bad note. I was awaken around 5 am in a big nerve flare up, the morning we left. It was the horrible toothache throb, this time pain was also radiating up the inner thigh. I took 2 pain pills and basically suffered thru the flight. Half way thru the flight, the non stop needle jabs added to the misery. This lasted til early eve. As far as the actual air travel, it went OK. I got early boarding each time, which was very helpful. I didn't feel I needed wheelchair help thru the airport. I did not have to do any connecting flights, it was all direct flights, so I welcomed being able to get up an move around after sitting for 4 hours. I did go thru the pat down, wanding, show and tell, but I also had my hands wiped down and my brace with a special pad, this was thru security in KC. In LAX, they just wiped down the brace. My crutches were stored in the overhead compartment. The only inconsiderate experience I had was at LAX. In order to get to the baggage pickup, you had to go thru revolving glass doors. They had a side exit with an attendant standing there. I went over on my crutches expressing the need to go thru the door exit and not the revolving doors. The attendant absolutely refused to let me thru. Despite my protest. My husband helped me thru the revolving door slowly. We turned around and found the attendant letting someone in a wheelchair thru the door exit. No wheelchairs for college tour, so crutches all over, fortunately it was about 75 degrees  ;D  One big thing I forgot was to bring my handicap tag for the car. We really needed it with the rental car. Did manage some sight seeing after we finished all the college agenda. We drove down the pacific coast highway thru Laguna Beach, ate lunch at Dana Point, got out and walked along the beach...had the ocean waves go over our feet. First time for daughter to see ocean.lol. Drove on down to San Clemente and over to San Juan Capistrano. Went shopping at Fashion Island in New Port Beach  ;D  We had dinner with husband's business associates at the New Port Beach Yacht Club and met their wives. They will be daughter's safety net while in California.

My knee needs several days to recover from this trip.  :P :P :


Janet,
Hope you have continued to see good results from your injection while I have been gone.  ;D

Pam

Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on March 02, 2008, 05:14:41 PM
Pam:

It sounds like you had a wonderful trip...and did really well with your crutches. Sorry about the lady at LAX not letting you through the door. How crazy! A couple of months before my injury in '99 we went to southern California on a trip with our high-school-aged daughter. We went up and down the coast from San Diego to LA, visiting the different beaches and doing a lot of shopping lol! I think I like Newport Beach the best.

My side of my knee is still sore at the injection site and I can tell where they directed the needle toward the back of the knee. I think there's an improvement in the tendon area, but it's hard to tell what's sore from the injection itself. I guess time will tell. But I'm not wearing the brace now, which is an improvement. I've done some walking this week and rode my recumbent bike a couple of times, but backed off after the first day when I did too much. So, my reaction one week later is that it may have helped some, but hasn't made a huge difference. And if this area feels better once the injection site calms down, I still have an area lower (top of the calf, maybe the top of the fibula?) that gets sore when I walk. But I figure we're working on one area at a time.

I'm starting to believe I will just have to live with this discomfort. I really shouldn't complain (but I'm going to lol). When I had the TKR, my goals were to be able to walk without pain, sit with my knee bent without pain, and go up and down stairs. I've pretty much reached those goals, as long as the walking is not-too-much normal, everyday walking and not exercise walking. I still have some difficulty going down stairs, but that's because of my limited flexion. I just really want to be able to exercise....not anything hard core (or even really soft core), just to take a walk or ride my exercise bike. I don't think that's asking too much?? But maybe it is.

Sorry about the complaining. I shouldn't have gotten started! When is your "vacation" in Cinci?

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: cat on March 03, 2008, 10:55:33 PM
Welcome back, Pam.
 ;D ;D
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on March 05, 2008, 02:28:05 AM
Hi Janet

Maybe the cortisone needs a little more time if it is going to work. I've never had much luck with those working, but I always give it a shot ( no pun intended) , thinking maybe this will be the time. I don't think you are asking too much to do those simple activities. I think it's good your OS is not satisfied and is looking to find out why you are having problems, better than what most OSs do. I had pain down by the fibular head / IT band area when I had all those combo problems that first yr. In 06 I had the fabella removal , neurectomy/ neurolysis and all the scar tissue removed from everywhere, he also did an IT band z plasty like Heather M had. My IT band was tight and scarred down. With your history, it could all be from scar tissue.

We leave for Cinci on March 17th and go back the 20th. Then I have surgery April 2nd.

CAT !

Thanks for the welcome home  ;D ;D  We need to get together for a frappachino  ;D

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: cat on March 05, 2008, 03:15:28 AM
Just say when,
 ;D ;D
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on March 14, 2008, 08:04:05 PM
23 weeks post op

I am now 23 weeks ( ~6 mos) post op . I have been watching crepitus that had developed below the patella along the tendon. It appeared around Christmas and was very "fine" in texture and faint. It stayed that way until the end of January and then I was able to feel it a little more. I also started feeling tightness in the tissues just below and medially to the patella. Like tape being stretched across that area. Within the last 2-3 weeks, it has really taken off. I now have very easily felt, coarse feeling crepitus, not only below the patella, but all the way around laterally and medially and across the top. The lateral side has more. Two PTs I've had, my regular one and one I've used 3 times these past few weeks have both remarked my patella mobility has really decreased. Patella mobes are now ranging from pretty uncomfortable to painful. I can feel it sticking.  I can also hear it when going down stairs and flexion. I've also been experiencing  swelling again and a return to very warm ...not quite hot, but definately an increase in knee temp. My PT program has not changed since I last posted the exercises. We stopped doing ultra sound because I actually felt it was causing mini flare-ups of nerve pain afterwards.

This is really disheartening, I am glad I kept my plans to go to Cinci next week and have this checked out. I leave Monday and will see them Tuesday and Wed. Surgery is April 2nd.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on March 17, 2008, 08:10:08 PM
Pam:

By now you are in Cinci. I hope that you can get some answers during PT this week. How disappointing to feel you are going backwards even now. I'll be interested to hear what they have to say.

Hope you find some time to have some fun on your "vacation"!

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on March 18, 2008, 07:50:39 PM
Hi Janet


Made it Cinc last night. the first 3 1/2 hrs driving was thru a nasty rainstorm with periods of blinding rain.  :P  Kids have been at the water park since this am.  ;D

I had PT this morning and it was confirmed about the scar tissue. It didn't take very long , after a few mobes he could feel the scar tissue all over. He said I had 2 problems now , the nerve and scar tissue. He worked doing patella mobes for about 25min and couldn't work it out. The largest thickest areas is below the patella. He said it would have to be done surgically. This particular PT is good at mobes and working it out, if he couldn't, that says alot. We did some stretches, leg press, hamstring curls, balance machine, leg dips, e-tem and ice. I didn't get in on the Dr's PT visit because I had just arrived and hadn't been seen yet , by the PT. RATS !  They said he will know when I come back for pre-op appt and surgery, in 2 weeks.

I am really glad I kept the Spring Break plans and got this seen. Even after all these years , you still think you're getting paranoid and over reactive when you start to feel those very early, small, minute changes ,but your experience and instincts tell you that it was scar tissue all along. Always one step forward and 2 steps back.  :'(

They worked the muscles well, I had alot of muscle fatigue when I was done and I didn't do that many things.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on March 19, 2008, 12:23:41 AM
Pam:

I'm sorry your worst fears were confirmed. But at least now you know and it can be addressed during the surgery. Only a couple more weeks....then you can start with the rehab again. I am praying for you that Dr. Noyes can get this all under control once and for all. It seems to never end for you.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on March 29, 2008, 05:40:27 PM
Pam:

I just wanted to wish you the best of luck with your surgery this week...Wednesday, right?  You're probably in the can't wait/dreading it stage right now LOL. I hope he can make the needed repairs and get rid of the scar tissue once and for all.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on March 29, 2008, 07:19:01 PM
Hi Janet

Thank you so much for the good wishes. I need them. My knee has been inflammed all week since last weeks PT session. I did 2 sessions this week and had to really take it easy because the swelling and heat increases. I don't know how good this is to go into surgery with a flare up of inflammation.I told them this week and they had me cut way back.

Yes, I am in the can't wait/ OMG  :o  state. However , everytime I think that way, the needle jabs and burning in the knee are there to remind me that the choice is , can't wait !  Last night was an active night for the nerve symptoms.  >:(

I'll keep it all posted here. We leave Monday, pre-op appts on Tuesday and surgery Wed.

How are you doing since your guided cortisone ?

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: EdD on March 30, 2008, 05:02:52 AM
Hey Pam:

Good luck next week! ;D ;D  Keep us "posted'! ;D

Best wishes for a speedy recovery,
 Edward

Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on March 30, 2008, 07:44:16 PM
Pam:

Thanks for asking about me in the midst of all your anxiety. The cortisone worked well for a couple of weeks, then wore off. I saw Dr. B on Wednesday and expected him to say, "Well, we tried." But he said that the fact that it worked at all was a good sign. He had hoped it would calm it down enough to get over the pain, but that didn't happen. Now I'm going to have an ultrasound to look inside the tendon for tendonosis, which is what he suspects. If an area can be confirmed, I will see one of his colleagues who has a special interest in tendonosis and has had good success with inserting needles into the area to cause bleeding and healing. So I go back to see Dr. B and have the ultrasound on Tuesday. I asked about the other areas of discomfort, especially laterally, but he wants to concentrate on one thing at a time. He's guessing it's all related, but there's no way to know for sure.

Have a safe trip. I'll be praying for you and sending best healing wishes your way!

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on March 30, 2008, 11:49:57 PM
Hi Edward and Janet

Edward,

Thank you for wishing me well on my surgery. It is much appreciated  ;D  I will keep you posted.

Janet,

That is very interesting about causing the tendon bleed. I recently was searching thru some articles and came across a similar treatment , only for ACLs. I believe I read where a doc was causing a small amount of bleeding to occur at the graft attachment to strengthen where it is attached. I wish I could remember where I read this ! Would something like that need to be watched carefully, since you have AF and could produce too much tissue healing from a small bleed ?


Well, all those last minute preparations have been done today. I hope I didn't forget anything  ::)

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: skibum9 on April 01, 2008, 01:00:08 AM
Hi Pam

I hope you had a safe trip to Cinci. Best of luck with your surgery and I wish you a speedy recovery.Keep us posted and say hi to the gang for me.

Sharon
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Jaci on April 01, 2008, 02:32:02 AM
Hello Pam,

Hope all goes well with your surgery and recovery.

Best wishes,

Jaci
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on April 01, 2008, 05:43:12 AM
Hi Sharon and Jaci

Thanks so much ladies, mucho appreciated.  ;D

 Had a very difficult time traveling, knee bahaved poorly and the weather was nasty. The winds were terrible, 35-40mph sustained with 60-70 mph wind gusts and pouring down rain. DH talked to someone, at the gas station, with a motor home, equipped with wind gauge. It clocked 70 mph.  We saw 3 semi trucks blown off the road, lying on their sides and a modular house laying on the side of the road.  :o  This went on thru Missouri and Illinois ( 6 hrs driving). Finally saw clearing thru Indiana and the rest of the way. Whew !!! We made it  :P

Sharon, of course I'll say HI for you !  Thanks for the good wishes  ;D

Off to bed, with a busy day tomorrow.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on April 01, 2008, 11:08:58 PM
Hi All

25 weeks post op open scar tissue removal and proximal z plasties in Oct 07

Today was pre-op appointments with hospital, PT and Dr N. Hospital was uneventful. PT preop went well. I've been thru it so much. Got another pair of compression stockings to add to my collection. PT reconfirmed the scar tissue in the knee. I went up to see Dr N. I had new xrays taken . Dr N came in and I proceeded to tell him about the redevelopment of scar tissue since I saw him in Jan, around and below the patella. I said it was all back where it was removed last Oct. He could definitely feel it and said it would need removal again. We went over the nerve surgery. Fortunately I was having a flare up of the nerve so it made it easy to see and feel where all the neuromas are located. I am really in pain now from all the manipluation to the nerve. This will not be an easy surgery. He said I am running out of options in regards to the nerve.  With all the scar tissue and nerve problem, I will be having a open surgery and scope. He will using my same 6 inch incision plus I might end up with a small incision on the medial side depending on how well they can get to the nerve. I was kind of surprised a scope would be used in addition with a large open surgery. I told you this nerve surgery was not easy. I will be in the hospital overnight and start PT next day at the office. Flexion was measured at 112.

Surgery is at 7:30 so I have to be there at 6am

Pam


Title: Re: Open Debridement and Proximal Z-plasty
Post by: cat on April 02, 2008, 01:49:37 AM
;D ;D Good Luck! ;D ;D
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on April 02, 2008, 02:34:39 AM
That's a lot of surgery, Pam. I can't say it enough....Good luck tomorrow!!

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on April 03, 2008, 07:53:38 PM
Hi All

Surgery was done yesterday, I got out of the hospital today and did my first PT session at the office, directly from the hospital.

Surgery started with the doctor coming in to mark the areas on my leg where I felt the most nerve pain. The procedure was explained again with it being a combination open surgery and scope. It was explained that there may be the need to make another smaller incision on the far medial side to get to the nerve involvement over there , if they were unable to get to it from the large open incision. Surgery went well. I came out with my leg wrapped from hip to toes. I had enough padding around the knee to where it looked like I had a soccer ball around the knee. During the nerve part of the surgery , they found 5-6 areas on different branches of the nerve that had neuromas. That is alot of neuromas , so no wonder I had so much pain. These areas were cut in half, then they burn the nerve end which then balloons up at the end. Then they bury the nerve end in the muscle. This is to prevent the nerve end from coming alive to grow erratic and become painful. After this was completed, then the scar tissue was addressed. I had scar tissue in the supraptellar and retropatellar areas. These areas were all debrided of scar tissue and synovectomy.

In PT today the huge bulky dressing was removed. Once all the cotton padding came off there was a large area about the size of a softball of bright red bleeding on the 4x4's. My incision was about 7 inches long and was bleeding at the top and the top/outside scope portal was bleeding too. We added several layers of 4x4's because as each layer was added , it would bleed thru, then the compression stocking and full leg ace wrap. My PT didn't want to do much to cause more bleeding. I did heel pumps, calf stretch, ham stretch , SLR. I need help with those as my quad has shut down ( haven't had that happen for a long time), calf raises and foam cylinder squeeze. After that I had e-stem to quad and game ready. They did not want me to come back for an afternoon session. They wanted me to go home to just rest, ice , elevate and do e stem 5-6 times/day. I go back in the morn. Flexion was 80. I am weight bearing as tolerated, but as long as I am oozing/bleeding, I am NWB. No patella mobes yet.....they don't want to stir the knee up with the bleeding. I was placed on Celebrex right after surgery as an anti-inflammatory .

When the dressings were off, I felt around the medial side and I feel completely numb from the far medial over to the halfway mark to patella. I'll take numbness over pain anyday. I have been experiencing some burning pain around the rim of the numb site, but doc felt it was expected for now and would go away.

Pam




Title: Re: Open Debridement and Proximal Z-plasty
Post by: cat on April 03, 2008, 11:04:10 PM
Wow, Pam. Bet you're glad that's over with. Are you feeling okay?  How long did it take to get all those neuromas?
Best wishes for a speedy recovery,
 ;D ;D
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on April 04, 2008, 04:37:36 AM
Hi Cat

YES ! I am glad it is over !!! I am feeling tired and quite sore. On the neuromas, do you want to know how long the surgery took to remove them ? I think surgery was close to 3 hours long. I was really surprised at the number but that certainly explains how and why I was having so much pain and experiencing so many different nerve symptoms. I have not had any burning today , that I felt yesterday post surgery.I am looking forward to no more burning, needle jabs, sensitivity , throbbing pain. All I feel is numb and it is wonderful. ;D  Also no more scar tissue . Cautiously optimistic and keeping fingers crossed on that aspect of the surgery......unfortunately,I know the nature of the beast too well.   :-\

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on April 04, 2008, 02:46:44 PM
Pam:

You're right, no wonder your nerve pain was so bad! I can totally understand taking numb over pain any day. I was that way, too, except I was "numb" because I was so spaced out on meds! Seriously, I'm glad that pain is behind you now.

Now be a good girl and follow all your instructions. Keep us posted.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: cat on April 04, 2008, 06:13:55 PM
3 hours, wow. Wonder what a neuroma looks like... ???
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on April 04, 2008, 07:42:56 PM
Hi All

Day 2 post-op

Today's PT was another very gentle session. Yesterday I had reported how my dressing change showed saturated gauze with bright red bleeding. When I checked the dressing again at dinner time, once again it was saturated so new pads were applied along with compression stockings and ace wrap. This morn at PT dressing change again showed saturated only mix of bright red blood and fluid. PT was kept to very basic of stretches, heel pumps, assisted SLR, quad set , toe raises and mod gentle ROM, nothing pushed. My leg was then elevated and gameready compression applied. I was told no afternoon PT at the facility but to go back to apt, keep leg elevated, iced, estem . No going out, just keep leg quiet to settle down. No mobes yet, do to the oozing and location, just quad sets, stretches, estem and very gentle ROM. I also need to make sure I monitor temp 2x's /day.


Cat

Neuromas are areas where scar tissue balls up around a nerve , causing compression/squeezing to the nerve. The nerve then sends out nerve ends thru the ball of scar tissue , like spaghetti sticking out, with no purpose, where they become very painful and erradic.  :o

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on April 08, 2008, 10:34:03 PM
Hi All

6 days post-op

The bleeding has stopped. Saturday the bleeding and draining had slowed down to only leaving about a quarter size on the gauze pads, Sunday was even less and Monday finally no bleeding or drainage even with PT.

With the bleeding problem finally done and over with, I could not go on to enjoy any peace with this knee. Right after surgery I had felt a little light burning on the far medial side of the knee. I told the Fellow when he visited me in the hospital. I said 2 percosets took it away but would come back when the percosets were wearing off. I just shrugged it off as post surgical trauma. Over the weekend I began experiencing the needle jabs below the patella, the same I had prior to surgery. I had a few on Saturday and again on Sunday. Monday I was back in PT. One particular execise involved using a theraband going around behind the knee with a towel between the band and knee for padding. Then you bend and straighten with the resistance. This exercise caused a rubbing on the medial side. I did OK doing it. This was my last exercise before icing down. When I left PT for lunch, my knee started to have that burning pain again, on the far medial side ,only this time the burning intensity was increasing. It was becoming very uncomfortable, so I started to lightly rub the area. I thought it was very point tender and started to palpate around when I got a horrific nerve pain zinger going across the knee resulting in needle jabs below the patella. I was just sickened . I thought OMG it is back only 5 days post op !!! I went back to do afternoon PT. The nerve had calmed down, so we did very light exercises. Today was clinic day to see the doctor. I told him about the burning post-op, needle jabs and a full blown nerve flare yesterday. He felt it was an irritated nerve from the surgery. You can't do nerve surgery without causing other nearby nerves to get irritated. At this point he feels it will calm down as the knee heals from surgical trauma. He said he did a very thorough surgery and did not see any other nerves needing treatment. If it does not settle soon, I will be going back on Neurontin. I said I would give neurontin another try since this nerve is just irritated as opposed to being a neuroma. I said I would NOT take Lyrica ever again. I am also back to using the TENS on this nerve. The area where he did the nerve work is all numb....I wish it extended further. At this point I wish the whole knee was numb. I am very swollen and black and blue. I am using double compression with compression stocking and full leg ace wrap. Flexion was 103. PT is making sure patella is worked well so I don't stick down in the next 2 weeks. I am doing e-stem 4-5 times day.

Pam

Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on April 09, 2008, 04:48:46 PM
Pam:

I sure hope this is just a fleeting problem and goes away quickly as your knee calms down after surgery. Your flexion sounds really good considering how swollen you are. Keep the faith.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on April 12, 2008, 02:11:57 AM
9 days post op

Thanks Janet for the encouraging words , I need them.

Tomorrow I go home after 2 weeks in Cinci. It will be nice to go home but against what Dr N wants. I have been getting increasingly tight around the patella esp above the patella in the suprapatellar/quad tendon area. My flexion has gone from 115 to 108 and I can't get around on the bike anymore. Patella mobes are decreasing side to side in mobility. I have alot of pudding consistancy swelling. After Dr N examined me yesterday he said I could not leave til this was improved. I have been dealing with very ill mother that was hospitalized while i was here and need to get home. I told him I had to leave. So I hope I don't suffer the consquences of leaving Cinci and PT dept in this critical time. I was put in a soft cast which will provide 3 layers of compression to get the swelling down. I am on double Celebrex and icing most of the time and elevation. I have had extensive patella mobes, stretching, Thomas stretch several times per PT session, bike and 20 min ERMI and passive over pressure manual stretching just to get to 108. I have to return in 2-4 weeks. It is amazing how quickly it all changed and things got tight. It felt like someone shrink wrapped the inside of my knee.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: QBknee on April 12, 2008, 02:29:22 AM
Pam,

I have not been on the site in a while and just read up on your latest surgery.  I hope your trip home goes well and the knee continues to calm down. Aside from some of the lingering sore nerve pain, it looks like you have some good ROM without really trying too hard to bend.  Don't forget about your extension!

Best of luck for a full recovery and NO MORE SURGERY.  This is it!

Dan
Title: Re: Open Debridement and Proximal Z-plasty
Post by: NotEnough on April 12, 2008, 02:55:48 AM
Pam,

I'm so sorry to hear that your mom is sick and your knee isn't cooperating during an already difficult time. That's too much to deal with. 

I hope things settle down once you get home. Have a safe trip back.

Sarah
Title: Re: Open Debridement and Proximal Z-plasty
Post by: skibum9 on April 12, 2008, 03:28:15 AM
Pam

Have a safe journey home. I hope that your knee settles down and you can progress forward on you rehab.

Sharon
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on April 13, 2008, 03:16:09 PM
Pam:

So sorry to hear your mom is very ill and you must return home. I hope you got home safely without too much discomfort. You have a lot of on your plate right now. I'm worried about you.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on April 17, 2008, 12:22:45 AM
Hi All


2 weeks post-op

Thanks to everyone who sent good wishes for my Mother. She is doing better but not out of the woods, yet. She has recovered enough to be released from hospital but now is in a nursing home...hopefully temporary. The 10 days she was in the hospital took a real toll on her physically and she is very weak and frail. It's hard to see your Mom in a nursing home and looking so frail. She is trying to build strength enough to go back home.


On the knee front... I had stitches from scope holes removed today. They were the tiniest stitches to see and were clear, so made it extra hard to remove. The residual nerve pain is still there but not quite as bad and very slowly calming down, so that is good. I have developed a new problem that will definitely slow down my rehab. Sunday night I got up to use bathroom during the night, I stepped down and was in excrutiating pain on the bottom of my foot. I absolutely could not bear weight. It hurt at the heel going towards the toes and very painful on top of the foot. I feel like I am stepping on a large lump. The foot has been swollen ever since. Monday I managed to do therapy , afterwards the pain was horrible. I stayed off it and went NWB with the crutches. The next morning the same thing, when I got up in the morn, intense pain with weight bearing, about bringing me to tears and this day, it was even worse. I started searching what this could be and I am leaning towards plantar faciitis, possibly a stress fracture in the foot. Today I had PT again and had him look at it. He feels the bottom foot pain could be the plantar fasciitis, but the top on the metatarsals could possibly be stress fracture. I called my OS who did my leg refracture/derotaton, since he is a foot and ankle specialist too. I m lucky to get an appt for April 29th. Not being able to put weight on the foot eliminated several exercises. PT is improving his patella mobe technique and has been able to get scar tissue to POP , he said like bubble wrap and get some thick areas to smooth out. Flexion is very stiff. I won't be able to get back to Cinci til May 8th , heaven only knows what flexion will be at that time.

I think this is the straw to break this camel's back. I just can't get out of the quicksand with this leg. When I make it halfway out ,I sink back in the quicksand, only further. Once again I am dealing with something that is extremely painful. I just got rid of the unbearable nerve pain and now this. I hope this doesn't turn into a chronic condition.  :'( :'( :'( :'( :'( :'( :'(

To end on a positive note, after snow over the weekend  :o , today it was in the upper 70's and everything is green and blooming. The lawn got it's first cutting today. Happy Spring !

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on April 17, 2008, 02:12:24 PM
Pam, girl, you do like to do things the hard way, don't you  ;). Seriously, though, I'm sorry you've developed this foot problem. I'm glad you've got an appointment with the foot specialist. Once you know what is really going on, they'll be able to figure out how to treat it....and hopefully incorporate that treatment into your knee rehab.

Yea for spring! We're in the 70s here today and tomorrow, too, but it's way too early to expect it to stay this warm.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Jaci on April 18, 2008, 06:02:04 AM
Hello Pam,

I'm so glad your Mother is out of the hospital. I hope she regains her strength and is back home in as short a time as possible.

I'm keeping my fingers crossed that your foot problem is nothing more than a bad case of plantar fasciitis. I've had that quite a bit from the AS, so I can give you lots of tips on exercises and stretches for it once you have a confirmed diagnosis.  ;)

Take care,

Jaci

Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on April 27, 2008, 03:35:38 AM
Hi All

This is not a knee update but rather an announcement !   ;D ;D

The Twins are here !!!  My son and daughter-in-law had twin boys this morn. One weighing 7lbs 11ozs   :o  and the other 6lbs 13oz.  :o This makes 5 kids for them and 7 grandkids for us. Everyone is healthy and doing fine. We went out to visit today and got to hold and hug them  ;D

Just wanted to share this good news !

I'll post a knee and foot update in a few days after my appointment for the foot on Tuesday.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on April 27, 2008, 03:09:57 PM
Congratulations, Grandma! What a joy....and how for you to have some good news to share.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: skibum9 on April 27, 2008, 11:13:05 PM
Congratulations!!!!

Sharon
Title: Re: Open Debridement and Proximal Z-plasty
Post by: NotEnough on April 30, 2008, 01:47:14 AM
Congratulations Pam! Those are good sized twins.
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on April 30, 2008, 03:38:06 AM
Thank you ladies for the congrats on the twins. They continue to do well. They found out they are fraternal twins from the blood typing of the cord blood. They look very much alike though. Lots of hugs and holding !!

I had my foot appointment today with the foot specialist OS. I have continued my pattern for only having problems that 1% of people get. i have been diagnosed with a complete rupture of my planter fascia tendon. It didn't end there either. I also have lateral planter nerve damage which was diagnosed by the fact I cannot move or abduct or feel very well my 4th and 5th toes annnnnnnnnd the extreme pressure I have had in my foot besides pain is called some sort of stress compression syndrome. All very rare. To top it off these ruptures can fibrose. Need to go more in depth with that when I have next appointment, given my AF history. I have been immobilized in a CAM walker boot with a special arch. I have to sleep in it too. I have to wear it for 3 weeks then take it off and try walking. I will see the doc again in 4 weeks to be re-evaluated. I was told this could be an ongoing problem. Right now , no surgery. So I have my leg wrapped with double compression for the knee and now a CAM walker on the same leg. I can try putting weight on with the CAM walker. He said if it was a stress fracture the treatment would have been the same , but I would have been better off with just a fractured foot instead of this.

On the knee front , flexion is still very tight and lots of work. I don't think I'm at 110 yet. I had a large hematoma that has gotten very hard and the size of a half golfball that they have started ultra sound on. I've found out those hardened hematomas get fibrosed too. Still some burning in the medial crease of the knee so will see about going on short term neurontin to calm that down. The needle sticks have calmed down and are much of a problem just here and there. I am still on double dose Celebrex for inflammation.  I go back to Cinci May 8th.

If I was a horse , I would have been put down after this.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: starpolisher on April 30, 2008, 12:07:41 PM
From what I have read, it sounds like arthrofibrosis is a lifetime of surgery and PT.  Am I right?  It's been 3 years for me.....I don't have a life except surgery and PT.  At one point .... after six months of PT I went back to work to get my sanity back.  Unfortunately after a year I almost totally lost the ability to walk and back to the surgeon.  My house is a mess!  I haven't been able to thoroughly clean it in 3 years!  When I have bit the bullet and done a small section for a few hours I pay for it the next day.  I still don't know what life with arthrofibrosis means. 

Please don't think I'm being a baby.  I have had many health issues since I was a very young child.....severe asthma, thyroid, panic disorder, numerous allergies to all sorts of things.  Through most of this I managed to obtain a degree and have had some wonderful jobs but now, at age 60, I feel totally useless and so tired of the surgeries.....2 TKR's at the same time (big mistake as now I have arthrofibrosis in both legs).  One cleaning out and a smaller spacer and mua's.  Feb a revision and revision scheduled for May 30.  I have been on morphine for over a year now.  I can't even remember how long.  Mentally I feel I am at my wit's end.
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on April 30, 2008, 02:32:23 PM
Pam: Aren't you tired of being in the "special 1%"  :-[? As I've said before, it just seems to never end for you. I hope the CAM boot works and your foot doesn't turn into a chronic problem. I'm glad the needle jab pains in your knee are diminishing, but hope the tightness gets better soon.

Starpolisher: I can tell from your posts that you are understandably depressed about your condition. But it's not true that AF patients will never get better. Some do improve with the proper treatments and go on quite nicely. Our knees will never be "normal" or "the same," but AF is not always a life sentence. Are you on an anti-depressant? It may help, plus they are also used as a form of pain management.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on May 07, 2008, 04:09:06 AM
Hi All

5 weeks post-op:  open debridement of scar tissue, synovectomy and removal of 6 neuromas

Well having a boot cast on a leg with a bad knee is the pits and sleeping with it on is very uncomfortable. I head out tomorrow for Cincinnati for appointment on the 8th. I will address the large hematoma that is very hard, persistant nerve burning in the medial crease. I will probably ask to go on neurontin for the short term. In the last several days, my knee is starting to become inflammed. I have had several episodes of very intense heat and swelling lasting several hours each. I hadn't had much problem with this since I was on celebrex right out of surgery but it seems to be coming on strong now. I am on double dose celebrex. Flexion is still very tight . 

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on May 08, 2008, 12:45:17 AM
Pam:

I hope you had a safe journey back to Cinci. We'll wait to hear what Dr. N has to say. Hopefully you're making some good recovery progress even with the continuing problems.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: skibum9 on May 08, 2008, 01:10:24 AM
Hi Pam

Hope you have a safe trip this week.

Sharon
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on May 09, 2008, 12:03:21 AM
Hi All

It took 12 hours to get to Cinci yesterday. We drove thru heavy downpour of rain from St Louis all the way to Cinci, plus detours thru St Louis and a little matter of having to turn around 30 min after we left to get a very important med I did not have with me.... oops ! ::) My husband is the greatest  ;D ;D ;D ;D

Well , I'm back from my appointment. I was there from 1:00-5:30.  After taking a ribbing on the Cam walker boot and ruptured plantar fascia, we got down to the knee. There is definitely scar tissue forming in the knee again. In fact I completely missed the fact that the portal closest to the medial joint line was dimpled and pulled down by scar tissue !!! How did I miss that.  My flexion measured 105. They immediately started patella mobes, then stopped to do ultra sound to try and soften the area, then began patella mobes and some very deep tissue massage on the whole medial side. I was fortunate to have the PT who is really excellent at deep tissue massage and patella mobes. He got many audible scar tissue pops. It surprised me to hear it and hurt to have them popped. He did this for close to 30 min. After that I did all my PT exercises.  I worked on ERMI for 20 min then more patella mobes, tissue massage and got stretched with the Thomas stretch. I only gained 2 more degrees and got to 107 on flexion. Dr did his rounds and when he got to me, he wanted to see me upstairs in the office. So after icing and estem , I went up. I told him all my concerns with the scar tissue and continued tightness, hematoma, residual nerve burning and recent increase in intense heat and swelling. He did a very thorough exam feeling all over the knee and now He is  putting me on a medrol dose pak for a week, then go off 2 weeks then back on for a week. During the 2 weeks off and after the last dose pak, I go back to high dose celebrex. He also is putting me on a month of neurontin, possibly 2 months, to calm the irritated nerve down. I need to really work on the ERMI to get the tissues stretched and flexion improved.  I go back to see him 6 weeks. I have another PT session tomorrow before I go home saturday.


I thought my hometown PT was doing better on the tissue massage and mobes til I had them done here today....what a difference. Like I always say, if I could stay for about 6 mos , I would probably be doing much better, watched carefully and treated accordingly when changes in the knee took place.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on May 10, 2008, 02:59:48 PM
Pam:

I'm glad you got in a good PT session or two in Cinci. I know it's painful when they break up the scar tissue that way, but can you tell the difference? After I broke my wrist about 12 years ago, it was totally frozen when I got the cast off. (Yes, I had a AF problem even then, just didn't know what it was called.) My PT would warm up the wrist in a paraffin bath (heaven!), then massage and break up the scar tissue. I could hear it pop. I told him it was more painful than when I broke my wrist and he didn't believe me. But it was...and it also worked. My wrist would move more freely after these sessions.

Hope you had a good trip home and added meds help calm down that nerve pain.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on May 16, 2008, 09:29:29 PM
Hi Janet

I can't imagine having this in the wrist and going thru scar tissue breakage. My PT uses the ultra sound to soften things up before the deep tissue massage. Started all the meds on Monday and still waiting for some results. My knee is going thru some very intense periods of heat , like having a furnace fire up. The other night we were at daughter;s last band concert before graduation and it was outside. /the temp was chilly but my knee was actually so intensely hot, I warmed my hands and other leg on it.  :o

I think there has been a break thru of sorts at my PT center. It is part of a orthopaedic surgical center with 3 orthopaedic groups. I have finally made some headway with PT taking notice of AF and now they are asking me more questions. The big break thru was my PT talking to one of the OSs about me and how I have to go to Cincinnati for this specialized care from Dr Noyes and his PT dept. This particular doctor expressed interest in wanting to learn more about AF. how about that ?  I also met the Game Ready cooling machine rep and he told me a person can rent those for about 28 days after surgery, there is usually a $250 out of pocket fee with ins.

Flexion is 105 -108 with alot of work.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on May 18, 2008, 03:59:33 PM
Pam:

Wow! Good for you that you've caused enough interest for the OS there to want to learn more. I hope your current PT really can keep you moving forward now. Is your flexion still improving, or will that be about it? How are those nerves doing? Your foot?

With my wrist, I also had a mild case of RSD. My OS recognized it right away when I went for a one-week post-cast appointment and had my sleeve rolled up because I didn't want the fabric to touch the wrist. For months my hand would blanch white then get red and hot. But I haven't had any lingering problems with my wrist except for some loss of motion...which I especially notice when I play the piano. And occasionally I will get a deep ache in the wrist, but not too often.

When I got into so much pain after my TKR, Dr. B said it was like RSD, they were going to treat it like RSD, but it wasn't really RSD. So I think that besides the predisposition to AF, I also am predisposed to the RSD (I know they don't call it that anymore, but I still think of it that way).

I know what you mean about your knee being hot. Surprisingly, I never felt that intense heat with the AF after my previous surgeries. But after the TKR and MUA, my knee would get so hot I felt like I could fry an egg on it. That went on for several months. It wasn't until about 12 months post-op that the heat completely went away.

Hope you're continuing to improve,
Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on May 27, 2008, 11:07:57 PM
Hi Janet

I didn't know you had RSD issues with the wrist plus AF. You are lucky you didn't have it with the knee during any of your surgeries. How did your needle rubbing the tendon turn out. I hope good results  ;D


8 weeks post op: open surgery neuroma excisions and scar tissue debridement

I have been seeing some results with the neurontin. I am not getting the burning to the medial crease that I was getting. I have also had a decrease in skin sensitivity. Hopefully it was all go away soon. Still getting 25 min of deep tissue massage on the knee from PT. My knee is still getting periods of intense heat so next week I will go on another medrol dose pak, currently I am back on the high dose celebrex. I have had some real concern on my knee, I stepped over my dog , my foot apparently was turned inward ( it was almost bedtime and I did not have knee brace on). When I stepped down there was sharp , sharp pain and then a tearing feeling on the LCL. My knee swelled and is painful. The very concerning part is my prothesis is now very loose on the lateral side. My PT here feels the lateral side is loose. Have been in contact with Cinci, I don't know how I can look Dr Noyes in the eye with this one. There must be a PAM voodoo doll out there and whoever has it , decided to twist my leg at that time.

I saw my foot OS for the plantar fascia rupture and have been out of my boot cast for 1 week. I can stay out of it and wear it only at night so my foot stays in a 90 degree angle. This keeps the foot from contracting the plantar fascia. I can try adding some of the weight bearing exercises back into my PT program . Can't do anything that puts pressure on the forward part of the foot only flat foot stuff so no calf raises yet. I see him again in 6 weeks.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on May 28, 2008, 10:02:19 PM
Pam:

Glad to hear you're making some progress on the nerve pain. But girl, you need to be careful! Those darn dogs will get you every time! Seriously, though, I just can't imagine anything else going wrong for you. Be careful.

My tendon needling was a stellar success. I saw both the surgeons yesterday and they are extremely pleased. The one who did the needling told me he wasn't sure if it would help. He had never done a biceps femoris tendon before, and I have had so much surgery in that knee. This is a pretty new procedure, so he's still gathering successes. He said I had made his day. I have no pain in the tendon anymore; in fact, I'm not even "aware" of it.

I have developed (or still have) pain at the fibular head. Dr. B thinks that's from the muscle that attaches there. Because of the tendon problem, the muscles haven't been working properly. So we'll give that more time to resolve on its own. The only thing I'm still frustrated with is the discomfort I get medially around the patella tendon, and sometimes even a sharp pain behind the patella. Again, he wants to give it some more time. I see him again in 6 weeks.

I asked when do we just accept that these aches and pains will always be there. He said at the two-year mark, which will be in November. I'd like to be completely pain-free, of course, so we'll see what the next few months bring.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on May 29, 2008, 04:13:35 AM
Hi Janet

That is fantastic news on your procedure. I'm so happy for you. I bet you are so glad to have that pain gone. Maybe you will be written up in a paper on this procedure  :o  :o  :o  I hope your other problems can be solved in due time and no invasive procedures. I hope you can enjoy the summer with your knee  ;D

I am really sick of these stupid injuries....at least they could have happened while I was doing something I enjoyed, but to have one happen getting out of a car, one falling down stairs and this one stepping over a dog. It's absolutely ridicules.  :P  Where's the bubble wrap

Great news Janet, on the outcome of your needle procedure.  ;D

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on June 23, 2008, 03:54:43 AM
Hi All

I am now almost 12 weeks post op. I finished my 2nd medrol dose pak 3 weeks ago and I am back on Celebrex. The 2nd medrol dose pak took a good portion of heat out but after 3 weeks now, it is beginning to return. The neurontin is still helping with the nerve burning, I have very little now. Scar tissue is still developing . My PT is still doing ultra sound and deep tissue massage and patella mobes. New areas are always coming up with the patella sticking or catching with mobes. thickened areas and bands,

I leave tomorrow for my next post op check in Cincinnati. I hate to tell Dr Noyes that the knee has been injured and feels loose again. Hopefully it wasn't damaged.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: teachergirl on June 23, 2008, 11:25:21 PM
Pam,
I'm so sorry to hear that the scar tissue is still developing!   :-[
I hope Dr. N has some good news for you or has some positive things to say about your knee.

I go back to Cincinnati in about a month...Maybe one of these days our schedules will coincide and we can meet face to face! :D

Hope all goes well...Keep us posted!

-May
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on June 24, 2008, 10:58:43 PM
Pam:

Yours is a good news/bad news situation, as it always seems to be. I'm glad the neurontin seems to be working, but sorry the scar tissue is still forming. Of course, it is early enough that it will be forming, so hopefully between the PT treatments and whatever Dr. Noyes decides to do, you can keep it in check until the process turns off. Sure hope you haven't done any further damage, either! Have a safe trip and let us know what he says.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on June 25, 2008, 04:04:57 AM
Hi All

Thanks for the good wishes Janet and May.


Today was an extremely busy day, and some what confusing day at the clinic, more than I have seen. I was there from 10am to 3:30 !  I did a round of PT before seeing the doc. When patella mobes were done the PT noted how thick the tissue and patella tendon area was , they also noted alot of scar tissue crackling. My favorite deep tissue /scar tissue buster PT was not there. He is on vacation  >:(  I was looking forward to having him do some deep tissue massage. When I saw Dr N , he told me my stability is OK but needs to be watched. I was also told my patella is now a little too low and needs to be watched. He wants me to go to pain management now too. He also said I need months and months and months of scripted PT. Tomorrow I go back for PT and need to get a little clarity on some things, as I said before, it was extremely busy. I am still to take Celebrex and Neurontin. I go back in 6-8 weeks.

What is involved with going to pain management? Why is one referred to pain management after being managed by the Dr's office ?

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on June 26, 2008, 10:36:47 PM
Pam:

I was sent to pain management when my OS felt the pain issues were beyond his knowledge. In your case, it may be that Dr. Noyes thinks you will continue to have chronic pain issues that need to be followed by a pain specialist. Like my OS said, he knows knees, the PM doctor knows pain. At PM, they did an assessment and prescribed a "cocktail" of medications. You are already on a lot of different things, so they may evaluate if those are the best meds for you and in the right strengths. In the PM literature, it said the first appointment would be an evaluation by a team of doctors, therapists (PT and OT), pyschologist, etc. But in my case, I just saw the PM doctor. As I went forward, all my pain meds were handled by the PM doctor. I would get one month of meds at a time. As I called for refills, I was reassessed over the phone. I went for appointments every few months, or could go more often if I had a problem. As you know, I was eventually able to come off all the meds. But as my PM doc said, the meds are used for chronic pain, so if I had any trouble coming off any med, I was to continue it and we'd try again in another six months.

Will you see a PM doctor at home or in Cinci?

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on June 27, 2008, 05:30:41 AM
Hi Janet

Thanks for replying. I am going to see a PM doc here at home. Dr Noyes has a former fellow practicing here and I was told they would ask him, who he would refer his patients to. I am also asking my PT if he knows since I rehab in same building as this former Noyes fellow. I am somewhat apprehensive about this ....I feel it's like when I took the lyrica.....taking the treatment was worse than suffering with the pain.... what happens if you need dental work/pain numbing or ER care, surgery, etc when on pain management ?

They want to make sure that the PM doc is well coordinated with Dr Noyes. I don't know why they can't keep doing it , but want the residual nerve pain looked into. The surgery he did removing all 6 neuromas relieved me from nerve pain hell but this new nerve pain needs looking at...as he told me before surgery, I am running out of options on nerve pain and can't keep removing nerves. It is all contained to the medial knee. Plus all the soft tissue/scar tissue pain, etc, My pain levels are between a 5- 9. How long does one stay in pain management? Is it a short term thing ? I haven't had a  pain free day in 8 yrs of this crap.

I was told my patella has dropped a little too low because it is scarring down. I also have a moderate sprain to the knee which should improve in 6-8 weeks.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on June 27, 2008, 10:54:25 PM
Pam:

I understand your reluctance, especially since you have such a good relationship with Dr. Noyes. But give it a chance. You may be pleasantly surprised. You are definitely into a chronic pain situation, which is what PM treats. You stay in PM as long as you need to be on the meds....a few months or the rest of your life. If you get into problems like you did with the Lyrica, your meds will be changed. That's the point. Finding meds you can stay on long term and keep the side effects to a minimum. I'm sure your PM doctor will coordinate with other doctors for any other procedures you may need. In my case, when I needed the MUA, my PM doctor was right there when I woke up, coordinating my pain control and prescribing the proper meds.

I sure wish this would all go away for you. If only I could wave a magic wand and make it happen. My heart truly hurts for you. Hang in there.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on June 28, 2008, 05:31:51 AM
Hi Janet

Thanks for your kind words....it helps so much. As much as I want pain relief, it sounds very rigid with contracts signed , etc. I believe I am supposed to find a PM with neurology experience for the nerve involvement. I don't want to walk around like a zombie....I need to be able to drive and function normally.

A magic wand does not have any side affects.....I'll take one.  ;)

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Teresa_S on July 01, 2008, 06:05:10 AM
Pam, Basically , you are so far out now that Noyes wants someone else to write the scripts and the reasons behind them requiring continuour meds after so many months/years.  All PM drs are not the same, naturally, I hope you get a good one, who actually believes that pain requires relief, and not somebody who is always wanting to try procedure after procedure. The contract I signed with Bailey ,my original OS, who did give lots of pain meds, had a contract that requirre me to NOT TAKE ANY narcotics from any other dr. no matter what. When I ended up in ER and got a script for Percocet for pain from something, I did not fill it because it violated my contract. The dr. I see now requires me to come to her office every month, to get med refills in person. A real pain. A friend goes to a pain management clinic in Iowa City and she calls once a month and they send the script, and goes every 3-5 months or so.  As always wish you the best of luck, See private message Teresa
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on July 22, 2008, 03:35:45 AM
Hey All

I haven't posted in awhile. I have been in a state if limbo getting things arranged for pain management. First I had to find one in my area. That involved asking my PT to ask one of the OSs in the medical building who did his Fellowship with Dr Noyes, who he would recommend. Had to wait for him to get back from vacation. Finally got a name and good feed back from another kneegeek who used him. Went to make appointment and found I needed a letter of referral from Dr N. Finally the letter came thru and PM clinic called me while I was in California last week. This week I was finally able to make an appointment for PM for next week. This whole process has taken a month to do. I was told to bring a driver incase I got an injection in the knee.  ???   This PM doc is an anesthesiologist who has nerve experience, which is what I was told to find. He'll have to do alot of explaining before he thinks of doing that. I have noticed the nerve pain increases when the leg is bent and I can now feel a lump in the area of the most sensitive pain, highly tender to touch, which leads me to think I have another neuroma forming. Also getting sharp pain and catching below patella and to the lateral edge of the patella. Don't know if that is associated with the lowering patella and flexion was 108 today. I lost 4 more degrees.


We'll see what this pain management doc's plan is next week. I return to Cinci for a Sept 4th appointment.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on July 22, 2008, 01:01:19 PM
Pam:

I've been thinking about you and wondering if you had seen the PM doctor. It sounds like you've found the right one, at least as far as his expertise. My PM doctor was also an anesthesiologist...don't know if they all are. I hope that lump is not another neuroma! Let us know how the appointment goes.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on July 24, 2008, 06:33:11 PM
Well, I am sure I have another neuroma that has developed....last night I was up all night in horrendous pain that was identicle to the nerve pain I had before I had the six neuromas removed in April. The burning, unrelenting toothache throb, highly tender and needle sticks were back and it was at the level of wanting to cut my leg off. My pain meds did not touch the pain. This area is just below the surgery area.

I just can't believe this  :'(

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Roma on July 25, 2008, 04:19:34 AM
PAM,

I just posted on Jakem's arthrofibrosis story in response to your post.  You sound like you have had a horrible time.
Even worse than me.  I have scar tissue in both knees and am soon looking at a 5th knee surgery because my prothesis keep coming loose from the scar tissue.  After reading on here, I see that you went to Dr. Noyes.  I wish I didn't live so far from Ohio.  I know I could fly, but it all takes money, and a place to stay while you recover.  I know no one in Cincinnati.  It is unbelievable one could have so much trouble and yet I know because I know what I go through every day. 

Roma
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on July 26, 2008, 05:27:23 AM
Roma

I travel 700 miles to see Dr Noyes and go for each appointment. I don't see or trust any OS in my hometown, only Noyes. It takes 10hrs to drive. When I go for appointments we stay in nearby hotels but when I have surgery we rent a fully furnished apartment to stay 2-4 weeks. I don't know anyone in Cinci either but we have been there so many times since 04 that it is a 2nd home to us now. I know it very well now. Our kids have their favorite spots to visit when they come along.  ;D  I had scar tissue problems for 4 yrs before the TKR. Arthrofibrosis is the reason why I had to have a TKR...because of the damage to the patella from patella baja and IPCS.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on July 31, 2008, 10:04:25 PM
Hi All

I am now about 4 mos post op from open debridement of scar tissue and 6 neuromas removed.

The medial burning area has continued to get worse and I now feel it is another neuroma. Not only is the burning and sensitivity worse but the needle sticks have returned more frequently and there is a pinpoint/trigger area . Last Wed I had the first major nerve flare-up from this, just like the areas that were removed in April's surgery. This was the horrendous nerve pain, toothache throb, intense burning, needle sticks and extreme sensitivity, heat and swelling, that I was up all night with. I took pain meds hydrocodone and tried a percoset, extra celebrex, ice, extra benedryl and finally dozed off at 5am. This is why I am pretty sure this has become another neuroma. When ultra sound is performed it is very sensitive to have the wand go over it, just like before.

I had my first pain management appt today. He spent 45 min with me. He was really amazed I had 6 neuromas.  From my description of pain and progression, he also felt it was probably another neuroma. I asked if this could happen again at this point in time post-op and he said yes. He laid out several options of treatment for the nerve. They ranged from medications, surgery again, to cryo treatment,spinal stimulator. Medication is where I am at right now. He is increasing my Neurontn to 1800mg/day if I can tolerate it, if not, then I can adjust down to where I can tolerate., adding lidocaine patch which I can wear all the time and taking hydrocodone on a regular basis. If I need to progress on narcotics he will send me to a MD Pharmacist who specializes in medication combinations with narcotics. If I am to go to cryo treatment he will send me to that doc. Cryo would help at first but nerve could regenerate again after a couple months. Surgery to remove it was probably a better way to remove the problem. Then there is a spinal stimulator which I think is more invasive than surgery. It sounded like it is much like the TENS unit in that it delivers a current and causes the brain not to process the nerve pain. One way is to place the wires in the knee on the nerve and connected to pacemaker size unit in ABD or back. The other way is to place wire in spine. I told him I've used a TENS unit and that basically distracts you with the current but only good as long as you have it on and would need to have it on all the time. I am not too keen on this stimulator and feel it is just too invasive and could come with it's own problems. This would be a last resort for me. They will call me in a week to see how I am doing on the meds. Injection wise , he only does cortisone and local in the knee. he felt cortisone would not do much at all for me.

At first I did not think I would like this doc because his nurse came in first and asked if I had thought of using a spinal stimulator. I was pretty taken back by this and said isn't that a bit too invasive for this problem !!!!! I thought OK, this doc is out to promote this stimulator, on to another PM doc and opinion. Doc came in and spent 45 min and I felt better about his treatment plan and his understanding of nerve problems, especially mine and listened to me. I did not have to sign any contracts and he said if Noyes has any additional meds or treatments to add, then great. Probably if I have to go to the special pharmacy doc then I would be signing contracts since that would involve more intensive narcotic use.

I also had a follow up appt with foot OS for my ruptured plantar fascia and now have to have a custom orthotic made to support the metatarsals and tarsals and hopefully relieve the pain there.

I hope I can tolerate the increase in neurontin. I already have short term memory problem with it. PM doc said that can happen and wasn't surprised. I was surprised when he said I could wear the lidoderm patch longer than 12 hours.

Pam





Title: Re: Open Debridement and Proximal Z-plasty
Post by: NotEnough on August 01, 2008, 08:09:30 PM
Pam,

I'm relieved to hear that you liked the PM doc and that he spent quality time with you. That is great.

I hope you can tolerate the increase in dosage without additional side effects. The spinal stimulator treatment option sounds quite intimidating.

You're in my thoughts,
Sarah

Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on August 02, 2008, 12:28:06 AM
Pam:

I'll bet you are relieved after this appointment that 1) he understood the problem, 2) he had treatment options that you hadn't tried before, 3) he didn't immediately want to do injections or start back at the "beginning," and 4) that he will work with Dr. Noyes.

As you know, I was on a high dose of Neurontin. Yes, I had short-term memory loss which was annoying, but worth it to me. I hope you can tolerate the increase. At least he's starting with that and not loading you up with a bunch of different things at once. Between that and the lidocaine patch, I hope you'll get some relief. The cryo treatment sounds like it may be worth a try if this doesn't help.

I also hope the orthotics help with your plantar fasciitis. My hubby is dealing with that now (not a rupture, though), so I have some idea of how painful it is.

Thinking of you and sending good wishes your way!

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on August 02, 2008, 04:39:54 AM
Janet and Sarah 

Thanks for the support  ;D  I felt the doc did listen and explained the nerve situation very well. He was very attentive to my input . I'm not thrilled about this stimulator and he knows it, but it is on the table. He told me about some other patients with nerve involvement some in the knee , that had the stimulator and how well they are doing. I guess if I felt I had a larger area of involvement or entire leg and foot but I feel that if the choice came to surgical removing it again or stimulator, I'll go for the removal. Stimulator will be when all else has been exhausted or I am exhausted  :P

I used the lidoderm patch today and cut it to the size I thought I needed....well I needed a larger area covered because of the burning I had and those things don't stick very well. I had part of it under my brace and I finally had to hunt down some first-aid tape and tape it down !!!  Did you have the same problem...do these come in different strengths ?

Janet -  The kids thought it was funny at first with my neurontin memory loss but now it's not, esp when I forgot to pick one up and also an appointment !!!  I also have had a hard time trying to find the right word or sentence I want to say and have felt like I somewhat slur some of my words like I had novacaine injected . I feel like I have the beginning stage of alzheimers.  :P

Pam


Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on August 06, 2008, 01:46:28 AM
I know what you mean about the memory loss being funny at first. Actually, I always tried to make light of it (what else could I do?), but it was annoying and embarrassing. So how are you feeling as you're increasing your dosage? Any change in pain and/or side effects?

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on August 16, 2008, 03:07:22 AM
Hi All

It's now been 2 weeks since I saw my PM doc. I have been using the lidoderm patches, taking hydrocodones and increased the neurontin to 1800mg/day from 900mg. The lidoderm patches have helped with the day to day burning. The neurontin hasn't made much of a noticeable difference and I don't like the side affects. The hydrocodone has not helped as I told PM doc it has lost it's effectiveness since I have taken it so long. All of these things are ineffective during a flare up where the burning is very intense. The PM doc has decided to send me to the other doc who does more of the narcotic combinations but also mentioned Dr N will need to see if this nerve needs to be removed. My PT has heard of this doc and said he is a Physiatrist. They faxed over the referral and I see this doc Sept 17th. PT is still doing deep tissue massage , when one area seems to loosen up more scar tissue developes in another area....above the patella and below and now on the medial hamstring tendon where PT feels adhesions. Flexion is pretty stiff at 108.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on August 16, 2008, 08:25:50 PM
Pam:

Sorry to hear you aren't have the results you hoped for. At least this doc has referred you to someone he thinks can better help you. That's better than him fiddling around for months. I sure hope you don't have to have more surgery, but it sounds like that may be what's in your future.

Has your flexion regressed? I know 108 isn't very good, but what did you have before. I have about 112 and find it doesn't hinder me too much.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Roma on September 01, 2008, 02:03:31 AM
Hi Pam,

I haven't posted for a while, but thought that I would give an update. I think I wrote before that I am scheduled for another TKR on my left leg on Sept. 23rd.  The prothesis has come loose.  I have been taking therapy on my right leg to see if I can get any relief from the pain caused from the reformation of scar tissue.  I have found a young therapist who actually knew what arthrofibrosis is and is using some new innovative methods to break up the tissue.  I am almost afraid to get my hopes up, but after 2 weeks of therapy my leg has loosened up a little.  My flexion in my right leg has only been about 85 degrees, but he has been massaging my knee, and stretching my leg, and actually using a little plunger (about 3 inches in diameter) to pull on the area around my knee.  Friday he measured my flexion and it was almost 100 degrees.  Unbelievable! My knee cap was actually stuck down and would not move, but in my last session he was able to move it.  I know I have a LONG way to go, but today we went to dinner with some friends at a restaraunt and I realized that I had actually been sitting with my leg down for about an hour and it wasn't just killing me like it usually does. lMy pt feels that he can get my leg to working again and then get a jump on this left leg before it gets like my right leg. He is very familiar with Dr. Noyes and worked under a Pt back east that is very well known for 3 years before being contacted to come here to work.

I am trying to make some decisions now regarding my upcoming surgery.  I have already looked into getting a cpm machine to have at home and I am going to insist that my doctor write me a prescription for it.  I want to keep my leg moving for as long as I can afterwards, although my insurance will only pay for 3 weeks at home.  I am also wondering about weight bearing.  I have read several posts on here that say that they were not allowed to bear weight for several weeks.  What does Dr. Noyes think about this method?  I know that here they want to get you up and walking right away, but no one is really that familiar with how to treat arthrofibrosis patients after surgery.  I have an appt. with my OS on the 10th and I know I am going to have to be armed with information in order to convince him that I should have a cpm machine at home after I leave the hospital and that I should not be bearing weight on it so soon.  I  have talked with my PT about this and I think he will go to bat for me.   I would appreciate your input on this.  I know that you must be overwhelmed by all of your problems.  I am finding that my leg problems are causing my arthritis to flair up all over in my body.  Thankyou for all the information you have givien us on this site.

Roma

 



Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on September 11, 2008, 03:36:20 AM
Hi All

I'm 5 mos post-op from open debridement and excision of 6 neuromas.

I had my appointment last week and didn't post on it because I have been in a deep funk ever since. First off Dr was not happy with PM doc's management of me. I told him PM doc only did neurontin, lidoderm patch and hydrocodones, then was really pushing a spinal stimulator on me. After 2 weeks when I reported the increase in Neurontin did not show much results and lidoderm patch helped some but still had a bad flare up, PM doc said that was all he could do for me and passed me on to the physiatrist, since I did not want a spinal stimulator. Noyes said absolutely No on the spinal stimulator and No to being referred to the physiatrist. He said he wanted pain management and that I needed to be managed chemically. In fact he said he wanted me to see a PM doc in Cinci and went out to the desk to have his med sec start calling his PM doc up but I said I can't do this living in KC !!!!  He told me I have intractable nerve pain and there is nothing more that can be done. They had marked 3 trigger points on the knee. The patella is still being watched because of tightness and restriction in the motion and it is a little low. He also feels I have quad wasting despite being in PT. He wrote me a script for a medrol dose pak to take at the start of my next bad nerve flare-up.  While I had PT there, I was talking to one of the therapist about this nerve problem and other patients with nerve problems and how they did. She said I was the worst they had come thru.

This appointment marked my 6th yr of a new Fellows class starting and the one I saw was very competent. He gave me the name of a plastic surgeon he worked with in St Louis , that did nerve work on peripheral nerves and pain management. He thought I could call this person and possibly get a referral on a PM doc to see in KC or travel 3 1/2 hrs to see her.  We have a neurosurgeon friend at home who we called to get a referral for pain management. Our NS friend said my case was way too complex and he sends his difficult ortho cases down to Alabama.I'll find out who he uses. I have a feeling it is Dr Andrews in Burmingham. I called to make an appointment with PM doc and needed to get referral letter from Cinci, so called today to tell them who I am seeing.

I was researching on this nerve/ neuroma problem in regards to plastic surgeons. I came upon a website for an ortho/plastics group located in Houston who's clinic is devoted solely to lower leg reconstruction. In their website was a specific section on nerves and neuromas and recurrence of neuromas. I was really intrigued by this group and their work on peripheral nerves. They had a place to email them so I thought what the heck, I'll send an email and try to get some sort of opinion from them and go from there. I'm not holding my breath on a response, but it would be interesting to see what they could say.

                                                ****************************

Roma,

I'm glad you are seeing results with your therapist's work. You must be thrilled to get to 100 flex. They don't use tools at the clinic in Cinci, they do deep tissue massage with the hands which gets pretty painful. One thing that is used extensively in PT for flexion work is the ERMI flexionator and gentle over pressure. Patella mobes is stressed so much. Very big on compression after surgery. I had ted hose on, gauze wrap/soft roll and 6 inch ace wrapping from toe to upper thigh for several weeks to keep swelling down.  Early establishment of ROM is key esp with TKRs, however, I was on crutches NWB for a couple weeks, then toe touch, then weight bearing as tolerated. If my knee responded with increased pain , swelling or heat with weigh bearing then I backed off and back on crutches, then worked my way to using one crutch. I am still go between one crutch and using a cane. I also was started on celebrex right out of surgery and took double dose ( 200mg twice a day) for a week, alternated with one a day for a week, for 6 weeks. then down to one a day, which I am still on. I also have been prescribed medrol dose paks and cortisone shots. Good luck on your appointment today !

Well that's all......I'm getting real close to throwing in the towel after 8 yrs of this.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: catwoman88 on September 11, 2008, 05:03:51 PM
Pam,

I am so sorry you've had this setback, its get's really tiring when you keep hearing from people that you're the worst case they've seen with this problem - it sure makes you feel great to hear that!. I know nothing about the nerve issues you're having, but I just wanted to reply to you as you've been so helpful for my AF issues and I so feel for you. My issue is nothing like as complex as your's and i get down at times so after 8 years you've every right to feel frustrated.

I hope you get a response back from the clinic in Houston and have better luck with the next PM Doctor that you go to see. Its so hard when one Dr tells you this and the other one says no to that, feels like you're being pulled in 2 directions and how are you to know what you should and should not be having if you've only just started to see the PM Doctor and don't know what to expect.

Keep us posted.

Lianne
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on September 12, 2008, 01:38:31 AM
Hi Lianne

Thank you for the kind words.  ;D   I'm still in this deep funk. I hope it doesn't last much longer. I don't even feel like PT....I am sick of it. I haven't heard back yet from new PM doc's office but they need the referral letter. Haven't heard anything yet from Houston but didn't expect much from them and maybe they are tied up with Hurricane Ike heading that way. Have had some bad nerve pain last couple nights so I've been hooked up to my TENS for several hours each evening.

Good luck on your posterior capsule release in Dec. ;D

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on September 13, 2008, 12:35:50 AM
Pam:

OMG, I'm so sorry about so many things. I'm sorry you've been dealing with this so long without relief. I'm sorry you haven't found the proper PM doctor. I'm sorry you didn't get good news from Dr. Noyes. No wonder you're in a funk. But as much as you might want to throw in the towel, please don't. You're finding other resources for possible treatment, which is good. As  you found with AF treatment, it can take a search and several disappointing tries before you found the right doctor. Keep searching and you'll find the right PM and someone who can treat those neuromas.

Perhaps one visit with Dr. Noyes' PM doctor is worth a try. I only needed to see my PM doctor once every few months. Updates and medication adjustments would be done monthly over the phone. I don't know about prescribing these kinds of medications over state lines, though, so that might be a problem.

Anyway, don't give up! You'll go through this funk and come out on the other side with more fight in you. In the meantime, we are supporting you from cyberspace.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: skibum9 on September 13, 2008, 02:26:44 AM
Pam

This funk that you have been in is completely understandable. I have been in one for the last few weeks as I struggle to find answers for all the health issues that seem to be surfacing as a result of my knee. Keep hanging in there and take it one day at a time.

Sharon
Title: Re: Open Debridement and Proximal Z-plasty
Post by: kk07 on September 13, 2008, 10:25:14 PM
Pam,

I feel as though our paths are very similar.  Have they ruled out RSD? I can't remember if you have said this because I too have the same side effects r/t the Neurontin.  I have been on 1800mg for months and noticed a significant increase in memory loss as well as marked funk feeling.  It helps sometimes with the nerve pain but sometimes it is just beyond help. I had suregery num 4 on Aug 26 for LOA, lat release, and removal of hardware.  After a week I noticed a huge lump medially right below patella so when i went for my 2 wk follow up they said it was a hematoma and drained 90cc blood off of it, but of course by the third day it was back, the neuritis/nerve pain had become unbearable .  To the point where I was waking at night screaming out in pain.  i have always wondered about neuromas, but I def have RSD because I have responded positively (leg temp increases, change in color etc, not pain relief) to the Sympathetic blocks, etc.  I have had three RF procedures done, the first lasted about 4-5 weeks and the second about 6 to 8 weeks.  The third was done 2 weeks prior to this last surgery in hopes to jump on the RSD on the front end of surgery.  It gave me about 1 week of relief and made me realize how bad my pain had gotten and I had just adjusted to feeling that way.

I too am way past this.  I want it all to go away.  Friends and family are wonderful and try to be supportive and "I understand."  I may sound bitter, but no they don't.  You don't know what it is like to suffer, hurt, and have all your former life things taken away from you.  NO make that stolen.  They don't understand the side effects of all the meds and treatments etc.  Is it obvious that I have had a ver long arguement with my husband who "understands?"  I know I sound hopeless but it is very frustrating to get to the edge of maybe seeing a glimpse of light at the end of the tunnel  only to fall back down the rabbit hole when a series of <1% horrible possibilities seems to occur. I have worked my tail off at pt, at home, work etc and it is just exhausting.  I do apoligize but I have to vent to someone who understands.  Memory loss has been the worse and, if you can't tell, overwhelming deep funk...aka Depression. 

I go to my ortho this Friday and I am just not quite sure what the next step will be.  I was supposed to be on schedule for a meniscal transplant in 2-3 months, but now I just don't know if whacking the thing off wouldn't be better.  After dealing with an incredibly stiff knee, all the procedures, AF, baja, fracture, and RSD, I think phantom nerve pain would be the lessor of having all the other stuff combined. 

I hope you do find some relief and positive info from your pm docs.  I just saw my pm md this week and he started me on Oxycontin 20 mg twice daily and Percocet as needed.  I was really afraid to do the Oxycontin but after he really explained that it is the same as the Percocet just a time released form so that I have a steady control, I relented and said I would try.  My TENS has given me some increased neuritis because of, I assume, prolonged use.  The lidoderm patch never seemed to work well for me.  I am glad it helps.  Maybe you might want to ask about some form of constant relief.  It is suppossed to give 12 hours I am only getting about 8 hrs of moderate relief though.  I go back the week after my ortho appt for follow up.  I, like you, am keeping the prospect of the spinal stimulator as only an absolute last possibity.

Thanks for having this page to vent and I do apoligize but I had to get it out.

K
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on September 24, 2008, 07:13:10 PM
Hi Everyone

Thanks so much for those kind words. I have really been down since my apppointment. My husband and I went away for the weekend which helped. It was nice to see some beautiful scenery.

I FINALLY got an appointment with the new PM doc. They have set me up as a consult for the first appointment and they block off 1 1/2 hrs to spend with the doc. I hope this guy can handle the job. I came across an interesting "booklet" on intractable pain, since I have now been diagnosed with intractable nerve pain. This booklet describes what is it, what it does, how treated and affects on the body as a whole. Very interesting read. Here is the link for those interested

http://pain-topics.org/pdf/IntractablePainSurvival.pdf

According to this booklet having intractable pain is rare, so chalk one more rarity up on the ole knee.

I'll post on my appointment. I hope he has a plan.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on September 26, 2008, 01:15:53 AM
Hey All

I saw the new PM doc today. What a difference between this doc and the first PM doc I saw. This clinic is part of a hospital. Very professional. Prior to appointment , I filled out 6 pages of health/pain assessment. First I had all my vital signs taken. Then I went thru an interview covering my history and pain with the nurse. Then I went thru an interview with the nurse practitioner. Her interview was more in depth concerning the pain, characteristics, etc and discussed different pain treatment,medication options. The Doctor came in and said I have been thru the wringer on pain for the last 8 yrs with so much trauma and 13 surgeries. He said nerve pain is a whole different animal and requires several combinations of meds and finding the right combo. He said I will never be pain free. His goal is to get my pain rating down to a 2-3 consistently. He says I actually have 2 types of pain, the nerve pain and somatic pain. He also knew all about arthrofibrosis and what I've been thru with that. He is taking the treatment process up slowly to see what med will work rather than start many and wonder which one helped or didn;t. He explained very in depth the chemical receptors in the brain, spinal chord and on the nerves how they work and how and which meds work on them, almost too technical. For starters I am staying on everything I am already doing which consists of

Hydrocodones every 4 hrs.
Neurontin 300mg three times day
Lidoderm patch 12hrs per day
Celebrex 200mg per day
Benedryl 25-50 mg for sleep
Medrol dose pak for flare ups
TENS unit

For now he is adding

Cymbalta 30mg per day for one week, then 60mg per day , this is supposed to work well for neuropathic pain
Volteran gel applied 4x's day to the knee.

I go back in 2 weeks where they will consider adding

Neurontin xtra 300mg at night
Long acting morphine plus break thru pain med.

These meds are to start with.

He also wants me to see the pain psychologist for at least one visit since I have suffered with high levels of pain for 8 yrs.

I did have to sign a contract with this pain med doc.

This doctor was very nice , very informative, and fully understood the pain I have been dealing with and the arthrofibrosis too. He held the same viewpoint on the spinal stimulator as me.

Pam


Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on September 28, 2008, 05:34:18 PM
Hey All

Why is it that medicines that are supposed to make you feel better and help , make you feel like CRAP !!!!!!   :P :P   I am only on day 3 of cymbalta and the constant nausea, stomach pain is incredible, almost to the point of unbearable . I am going to ask the pharmacist if I can take dramamine with this med ....I hate having to take drug to combat the affects of a drug, to combat the affects of a drug, etc,etc..........it never ends.  To make matters worse , I have to travel all week.  :P

Pam


Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on October 04, 2008, 06:00:45 PM
Pam:

I just got back from vacation and read your newest posts. I'm glad you are in better hands with this new PM. That sounds like the kind of place I went for PM after my TKR. Have you worked out your stomach problems? You should probably be asking your PM about the stomach pain. He may be able to change your meds. I hope you get the stomach pain worked out and get relief from your pain.

We went to Colorado Springs to visit our son. He moved there a couple of months ago. I was really surprised at how well I did with all the tourist stuff we did...lots of walking and steps! My knee has been feeling so much better since I quit walking for exercise. I'm sad because I really wanted to walk and exercise and lose weight, and the ten pounds I lost have found me again LOL. I'm a little disappointed, but I guess I'll take the pounds over the knee pain. I can't believe it's been almost two years. I guess Dr. Blaha was right that it would take me two years to heal. I finally feel like I AM healed, but I guess I'll continue to have some limitations. Or maybe by my 3-year anniversary I'll be even better.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on October 07, 2008, 04:26:55 AM
Hi Janet

Wow! that is great news on how well you did on your trip to see your son. I'm glad you got to enjoy things and the knee allowed you to do so. I can;t believe it has almost been 2 yrs for you. It will be 4 for me in Jan. I hope your 3rd anniversary you can say you don;t even notice your knee !!!


After that 3rd horrible day on cymbalta, day 4 was so much better. It came just in time because we flew out on day 4 to CA to take daughter out for college and didn;t get back til Sat eve. I am all shopped out. The cymbalta combined with the neurontin and lidoderm patch, has helped cut down the burning and needle sticks. I am still having the deep toothache throb. I go back to PM on Friday so I;ll see if they are going to add to it to help with this throbbing. I am up to 60mg/day on Cymbalta. I have days when I feel kind of drunk on it. It's hard to get 4 doses of Volteren gel applied to the knee. I can usually just get 2 done per day.

It's getting to be everytime I go out of town, Mom has another health crisis. This time her heart rate took a dive to the 40's  while I was gone and rushed to ER. She got a pacemaker placed today and seems to be doing OK.

It's nice to have the burning and needle sticks ease up.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on October 08, 2008, 02:11:42 AM
Pam:

Finally, some good news! I'm glad your meds are working and the and burning needle jab pain is gone. That's fantastic news. It does take a little while for your body to adjust to new meds, but I found the unpleasant side effects did diminish over time (although they didn't go completely away until I was off the meds). I'm confident that your new PM can help you through the throbbing pain, too.

We are in the sandwich generation, aren't we? Taking care of our kids....our parents....and oh, don't forget ourselves! I hope your mom continues to improve and the pacemaker works well for her.

Keep in touch.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on October 22, 2008, 06:14:22 PM
Hi All

Another update:

Had 2nd PM appointment 2 weeks ago. Always have to fill out a pain sheet labeling pain, assessing quality, duration, and rating on the pain scale. Saw nurse practitioner and she wanted the PM doc working that day to see me. My doc was over at the hospital. I told them the cymbalta was easing some of the burning and needle sticks but was not liking the drunk feeling. I also said I could not sleep. The hydrocodones were not doing much for me and I reiterated the fact I have been taking them for 8 yrs. Doc examined my knee and located those nasty trigger points and made me jump. He discussed doing an injection next time with a long acting anesthetic. He also discussed doing cryo-ablation to the trigger points. He could feel knots on the trigger points. He is having me take cymbalta in the eve instead of morn to see if it helps me sleep and to help with that drunk feeling. He is also changing my pain med to percoset for the throbbing nerve pain. They want to see me in 4 weeks .

Today was my appointment with the PM psychologist. He wants 4-6 sessions ( $$$$$) and will give me some ways to deal with pain. I'm not really keen on seeing these psychologist people, even though he seemed to be a very nice person, but I'll give it a shot...I can always say  "pass"  if I don;t agree with something.

I saw an OS who specializes in shoulders for left shoulder pain since June. I had 2 previous injuries to it in the past. The pain just got to a point where I was having problems with constant pain, ROM and had one episode of catching / impingment. PA and doc examined. They mentioned torn rotator cuff and torn labrum and a shocker....he thought I also had ARTHROFIBROSIS !!!   :o :o 

I had an MRI yesterday and see doc tomorrow for results.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on October 24, 2008, 09:01:36 PM
Pam:

Thanks for the update. I often wonder how you're getting along. It sounds like your new PM place is willing to try some different things to help your pain, which is definitely a good thing. Have you seen any difference by taking the cymbalta at night?

I can't believe you're now having shoulder issues, too. You're falling apart, girl LOL! Did you get your MRI results?

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on November 05, 2008, 04:52:59 AM
Hi Janet

Got my MRI results back. The OS says I have adhesive capsulitis/arthrofibrosis , rotator cuff and bicep tendonitis. RSD was even mentioned. I got a cortisone shot in the shoulder and placed in 6 weeks /3x's week PT to get my shoulder stretched out ( hurts like he11 to have this done) and improve ROM. It's pretty amazing AF happened considering I have been on celebrex for my knee since April's surgery and was even on a medrol dose pak for the knee. I am seriously considering seeing a rheumatologist because obviously I have a some sort of systemic inflammatory processs in my body. I also have atrial fibrillation and that has been linked to an inflammatory process too. The shoulder involved is my dominate shoulder...the left. Because of my knee, I compensated by participating in activities that involved my upper body , add in 2 previous injuries to the shoulder ( one horse related) 

Thursday I see pain management doc to see if there will be any adjustments or additions to meds and report the newest AF member of my body. I also will see if he will be doing an injection in the knee like he talked about last time. I think taking the cymbalta at night has helped to make me more sleepy but is causing several muscle twitches/spasms when I am getting in the relaxed phase before falling asleep. Very annoying when you are suddenly jarred awake a couple times from your leg , foot,shoulder, or head jerking. When I am asleep, I have started something totally brand new.....talking in my sleep according to DH. Never did this before in my life.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: kk07 on November 06, 2008, 04:17:05 PM
Hey, I am going for MRI of my left shoulder this week for possible impingment...I guess from all the crutches. NO known injury other than stretching out like a rubber band when driving trying to reach something in  the back for the kids or in my bag! Imagine that!!!  Also having a partial (lateral) knee replacement in two weeks because of the lateral compartment syndrome that developed because of all the other stuff.  Have done really well since getting all the hardware out and having the lateral release.  I can get to 115-120 cold and 125-128 with displacement and pulling/stretches by the PT.  I haven't seen these numbers since I put on a pair of skis almost 2 years ago.  A little worried about putting something back in now that it is all out.  My ortho decided against the meniscal transplant becasue of the 3 very large lesions I have on the femoral and tibial condyles. Said scarring would be too much of an issue.  Question for all you knee replacements - how long after before I can drive?  We have to turn my husband company car in and so that leaves us with only 1 car.  Trying to see how soon we will need to get another. 

I am glad you are doing better.  Thanks again!

K
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on November 06, 2008, 07:08:23 PM
Pam:

I think a visit to a rheumy would be a good idea. Perhaps there is some underlying common denominator to your problems. It's just too coincidental that all these things are happening all of a sudden. Did the cortisone in your shoulder help? What did your PM doctor have to say?

I went for my 2-year check-up on Tuesday. (I can't believe it will be two years on the 17th!) I thought Dr. B would say that now that I've reached the 2-year mark, I'll have to live with it the way it is. Like I told him, I'm happy...but not overjoyed. I've got my life back, but I still have pain. I was surprised when he told me he wasn't happy unless I'm pain-free. Bless him! I had knee x-rays, lumbar spine x-rays (just to rule out an undiagnosed nerve problem), and an ultrasound of my entire knee (which we hadn't done before). My knee x-rays look great, my lumbar x-rays are fine, and the ultrasound showed the tendonosis in my biceps femoral tendon has returned, the patella tendon is thickened (which I knew since I have patella baja), and the rest of it looks like they would expect it to look for someone who has had as much surgery as I have. So it's a bit of a mystery....which doctors always find intriguing.

He gave me the option of going back to PT for iontophoresis along the patella tendon (which always bothers me). I'm not thrilled about it, but I'm going to do it. I asked if that would be all they do, and he said they'll do an evaluation and decide on a plan. My PR prescription says "local anti-inflammatory effect with modality such as iontophoresis to region of patella tendon; call for clarification." If the PT "plan" gives me any more discomfort, I'm going to quit. And that seems to have been the pattern laterly....PT only makes things more sore. I don't need that now. We'll see how it goes. I start on Monday morning. Dr. B is also going to check with Dr. H to see if he would consider doing another tendon needling to the biceps femoris tendon. That's the tendon that prevents me from exercise walking....which he said I should be able to do, and was unhappy that I had enough pain to have stopped. I have another appointment with Dr. B in 6 weeks. He will consider lidoderm patches if PT doesn't work.

He told he'd like me to try the PT for two reasons. First, as a physician, he wants me to be pain-free. Second, as a scientist/clinician, he wants to know what's causing the pain and how to get rid of it. But he understands that the pain is connected to a real person, so I can call it all off and live with it at any point I want. I really don't want any more treatment, but don't want to leave any possibility of a better result to go untested. I appreciate that he didn't just tell me to go live with it. I'm willing to give it a little more, but am definitely getting tired to it all after all this time.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on November 11, 2008, 07:04:06 PM
Hi Janet

Happy second birthday to your knee  ;D ;D ;D ;D ;D

Sounds like you had a good quality appointment with Dr B. You did have good results with you tendon needling so maybe another would be helpful. Could you possibly be experiencing scar tissue or nerve pain ? I had scar tissue encasing my collateral ligaments and wrapped around my IT band, plus under the patella tendon. I am using a med called Volteran gel. It is the anti-inflammatory called diclofenac. I use it 4 times a day by rubbing it all around the knee. You might ask about this as another way to deliver an anti-inflammatory. I am using a full sheet of the lidoderm patch on my knee.

I saw my PM doc last wed. I told him the daily burning was better but I still was going thru several periods of a burning flare thru the day and I was also getting muscle spasms all over when I sleep. He has added another med to the ones I already take. It is called Baclofen. It is a muscle relaxer and has qualities to help with neuropathic pain. It works by blocking certain pain receptors in the brain. I started on 5 mg/ 3 times day and now on 10 mg/3  times day . It has helped with the burning flares and the muscle spasms. It has taken time to get used to this med. I am having a hard time having the energy to do the forum.

Shoulder PT is very painful with the stretching. Didn't get stretched on Monday because the pain levels from Friday's stretching were up to an 8.

Good luck on the iontophoresis. I hope you see some improevement so you don;t have to do anything more invasive.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on November 12, 2008, 01:30:00 AM
Pam:

I was hoping you'd say your shoulder was getting better. Sorry PT is so painful. Have you seen any improvement?

It sounds like you've got a really good PM doctor. Finally! It's too bad you have to take so many meds. I know they have so many side effects. The six months I was on everything is pretty foggy, so I have some understanding of what you're going through. But it was worth it to bring the pain down. I hope you eventually will break the cycle and won't have to be on so much forever.

Thanks for the idea of the Volteran gel. I'll ask Dr. B about it next time I see him. Yes, I'm sure some of my pain, especially around the patella tendon, is from scarring. My ultrasound showed "tenting," which is due to the scarring from what I understand. I'm not sure exactly what "tenting" is, though. My scar tissue is visible around the patella tendon area. The biceps femoris tendon is irritated because of the way it comes across the prosthesis. I'm hoping Dr. H will agree to do the needling again, but I wonder if the tendonosis will just come back again. After all, we aren't changing the cause.

I understand about not wanting to post. Just pop in when you are able. In the meantime, know we are thinking about you!

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on December 09, 2008, 06:04:51 AM
Hey All

Last Friday was another appointment with pain management doc. Another pain assessment sheet and visit with nurse, nurse practitioner and the doctor. Since I lasted posted , I had a scary heart episode ( I have a history of heart arrhythmias ) after taking the 10mg dose of the muscle relaxer for the second day. I thought I was going to have to go to the ER. I had to call PM and cardiologist. Cardio doc wanted me on lower dose which did not work as well and as the month went on it lost it's effectiveness. PM doc is changing the muscle relaxer after getting cardiac doc's approval. PM doc examined my knee again and felt the neuromas. He decided to do some injections using a very strong anesthetic. He used Bipuvicaine , the one used in spinals. They don;t even keep it in the clinic and had to go over to the hospital to get it.. I had to sign a permission form. My knee was all prepped with a pad that is antiseptic and topical anesthetic then my knee was sprayed with cold spray. I would help the PM doc locate the neuromas again. He can feel the small knot it makes, plus it is painful. He then proceeded to inject it with the Bipuvicaine. He located 4 neuromas and did 4 injections to the medial side of the knee. There is a possible 5 neuroma closer to the patella. He said sometimes you can "kill" a nerve by injecting it with a strong anesthetic besides making it numb. It was pure heaven to enjoy total numbness for 12 hours. After 12 hours some burning returned. It lasted 2 hours. The next day I only had 1 major burning flare up and a couple smaller ones. Same thing on Sunday. Today the neuromas are becoming tender to touch. I don't know how long this will last but every moment with less pain is enjoyed.

PM doc is also talking about increasing my Cymbalta by 30 mg and has mentioned the cryoneuro ablation as a future treatment. So far I have been pretty impressed with this pain management doctor. He seems very knowledgeable about nerve pain and has many ways to go after nerve pain. He takes the time to LISTEN to me, allows more than enough time to ask questions and values my input.

Nerve pain aside, the patellar tendon pain has returned along with increasing scar tissue crepitis and tightness. Sent an email to Cincinnati for my OS with an update. They want to see me after the first of the year.

Wed is my 2nd appointment with PM psychologist.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on December 09, 2008, 06:49:56 PM
Pam:

Thanks for the update. I'm glad you've had some relief with these new injections.  I can tell your PM doc really listens to you. It must be a relief to have finally found a doctor who continues to find ways to combat your problems, who always has another idea up his sleeve. I have the same thing with Dr. B, and just when I think he's going to say that now we've reached the end of our options, he comes up with another treatment.

As always, I'm sorry you are living with these continuing problems!! Hope you can enjoy the holidays before going back to Cinci.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on December 16, 2008, 06:51:10 PM
Update

Last week the nerve pain returned to pre-injection level. By Wed I was having some very intense throbbing "toothache" intense pain with very tender to touch pain. It started in the night. That morning was my appt with my PM psychologist. I was also supposed to fly out to Boston. I told him about the pain and asked if I could have another injection for this pain to help me get thru my flight. He said they would not inject because they would not want me to travel afterwards. I was in agony for the whole flight, evening , night and half the next day. I had to load up on percosets. PM psychologist gave me a sheet to fill out on pain ....a journal of sorts. I'm not thrilled having to do homework and hate these types of activities.

PM doc called and they have switched my muscle relaxant from Baclofen to Flexeril.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on December 18, 2008, 01:24:44 AM
Another update


I saw my OS who is handling my plantar fascia rupture I had back in April. This was a follow-up appointment after having a custom made orthotic made. I told him I have still had several episodes of sharp pain in my foot , sometimes to the point of not bearing weight on the foot. I also said I noticed my foot turns out when I walk and my ankle is rolling over despite the orthotic. He had me walk and stand and performed several tests including ones for strength. He also noted as I sat on the table with legs dangling that my foot draws up medially. When he was all done he told me I have posterior tibial tendon insufficiency. My tendon is totally non functional. This is the tendon running down the inside of the leg and around the medial ankle bone. He said it probably was from all the trauma my leg has been thru with all the fractures and surgeries and it progressively got worse. He said this explains all the problems with my foot. My fibula was hitting one of the bones in the foot from being out of alignment. He said I was need surgery. He will have to fuse my ankle to hold it in place. This will be done is several places. I will be NWB for 8 weeks and in a cast all that time and a little beyond. He said it would take a total of 4 mos.

This is on the same leg as all my knee problems. I am looking at surgery in January or FEb.

What a way to start off the New Year  :P

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on December 18, 2008, 02:14:22 PM
Pam:

I hardly know what to say to you anymore. "I'm sorry" just doesn't seem to cut it. I guess the ankle bone really is connected to the knee bone (sorry, a poor stab at humor LOL).

I saw Dr. Blaha yesterday and we agreed that my knee "is what it is." He did give me a prescription for lidocaine patches, so I'll see if they help. PT did give me some very minor relief, but not enough to make much of a difference. He also gave me a script for the gym (so my WC would pay for it). I asked what I should avoid, and he surprised me by saying he doesn't like any of his TKR patients to do exercises where you bend your knee toward the chest and push with your feet...like the leg press. I've been doing it in PT, although at low weights! Interesting. Anyway, it's kind of a relief to know we're not going to try anything else right now. I'll see him again in May for another evaluation.

Have a merry Christmas. Try to put your upcoming surgery out of your mind as much as possible and enjoy.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on December 19, 2008, 02:45:15 AM
Hi Janet

I don't know what to say anymore either. I was completely blindsided by this one. I ran this by my PT in Cincinnati and he said that is what their Foot docs do. I had to keep from tearing up when the OS said this needed to be done. I've been using any free time between Christmas shopping, to research this. I post occasionally on a website called My Broken Leg, since I started this whole mess from a severely fractured tibia and fibula back in 2000. There are some people responding who have had this and gone thru fusions, so I'm getting some help and support there. It sounds like It won't be an easy process. Part of the fusion process involves taking bone graft. One person I talked to had it done from the heel. Don't know what PM doc and psychologist will say when I tell them this news.

I hope the lidoderm patches help you out. I've been using them since August and don't like the 12 hours period when they are off. I found I needed to use a wrap around my knee to keep them on. I used a reusable self stick wrap from CVS. It comes in a roll and I just cut the amount I need to wrap it. I can reuse a piece for 1-2 weeks before cutting a new one. They say they are washable, but I never have. An ace wrap is too much material. I tried taping and that didn't work either. You can also cut the lidoderm patches to the size you want. I started off using half a patch and had to go up to a full sheet. I guess he didn't want you to have another tendon needling.

I do the leg press on light weights but Cinci pts want me starting out at a 60 degree angle and I only work in a pain free zone. On my leg press , I start off in a bent position at 60 degrees and then push to straighten. I don't go all the way down to the 60 degrees with weights. It's not in my painfree zone.

Thanks for the support  ;D  Have a Merry Christmas  ;D

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on December 19, 2008, 07:28:32 PM
Pam:

Thanks for tips on the patches. I'm not supposed to wear them all the time (and don't need them all the time), just when I know I'll be doing something that stresses the knee...like walking a lot. Dr. Blaha doesn't really like to mask the pain because, as he says, the pain is there for a reason and he doesn't want me to do anything to hurt myself. I'm anxious to try them out, once I finally get the script approved by workers comp.

I'll be interested to hear how your PM doc and psychologist will prepare you for your ankle surgery. It doesn't sound like fun at all...but hopefully it will truly correct the problem. A lady I work with found out about six months ago that a tendon in her ankle/calf (sounds like the same one you're talking about) was torn years ago but never properly diagnosed. Luckily for her, the specialized orthotics seem to be helping. She doesn't even want to talk about surgery.

Hang in there, Pam. I hope you enjoy your holidays.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on January 06, 2009, 03:46:53 AM
Update


I have a date for my ankle fusion. It is January 23rd. I see PM doc this Thursday and can;t imagine what they will say and how they will have to coordinate my surgery with my meds. I also need to discuss a disturbing incident during the night....DH says , twice, I started talking in my sleep only this time it was normal conversing , He said I was awake and saying things that didn;t make sense and at one point tried to hit him. He tried to wake me up even though my eyes were wide awake. I did not "awaken" out of this state. I have never done this.....it all started when the Cymbalta was added. My PM doc has a lot of "splaining" to do !

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on January 10, 2009, 04:21:48 PM
So Pam, what did your PM doctor say? That's so weird about the nighttime incident! These drugs that are so great in some ways have some of the strangest side effects!

You can't be looking forward to this surgery, but once again, hopefully it will help. I seem to say that to you a lot! Keep us posted.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on January 12, 2009, 01:38:19 AM
Hi Janet

How are you doing ? Did you use the lidoderm patch?

I saw PM doc and PM psychologist last Thursday. PM doc did not think my night episode was related as a side effect of Cymbalta and neither did the Psychologist. The later thought it was from getting in a very deep sleep and in a trans state. He said I've been on the Cymbalta too long to be from it. He explained some insight on what he feels it is and we discussed this angle stemming from my horse accident and key medical events afterward. Just as you get into a good discussion, the time is up !!! lol

PM doc wanted to inject my knee again so I had 5 injections of bipuvicaine to 5 neuromas. I had 12 hours of total pain relief  ;D  I can tell as each day passes the pain is increasing but I am enjoying any time I don't have it. No changes were made to my meds. We discussed my upcoming surgery and pain management. They know the doc doing the surgery and will have him in charge of pain meds for a month unless he choses to have my PM doc manage it. My concern is not getting my meds on time in the hospital....some of these you don't want to skip.

I see PM psychologist again , 2 days before surgery. I am still dealing with my shoulder too  >:( >:( >:( >:( >:(

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on January 13, 2009, 12:59:24 AM
Pam:

I understand your worry about getting your meds in the hospital. Your pain is barely controlled; you certainly don't want to miss a dose on top of the pain you'll have from your surgery. One good thing...doctors like "interesting" cases and yours certainly is LOL!

The lidocaine patches have given me some relief. Actually, most days my knee feels okay...never totally pain-free, but certainly okay. On the days I have pain, the patch does help, especially on the patella tendon. I have some medial pain that gets worse when I sit a long time (I was stuck in a meeting today from 9:00-3:00 with little chance to get up and move around), and the patch doesn't seem to help that pain.

I joined a gym and found that the elliptical is a great exercise for me. It doesn't hurt my knee as much as walking, and it really, really works my weak quads. And it gets my heart rate way up there. After the first couple of tries when my knee was very sore after (and the patches really helped then), the knee has responded pretty well. I'm glad to find something that I can do to get my heart rate up and not kill my knee. I could never walk fast enough to get my heart rate up much, anyway, so I'll give that up for now. My hope is that if I can build my quads with the elliptical, it will take some of the knee pain away. I also KNOW I need to lose weight, and hope that this cardio exercise will help. So...my life goes on, not pain free, still with limitations, but I'm happy.

Only another week until your surgery! I'll be thinking of you all week.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on January 14, 2009, 02:40:37 AM
Hi Janet

I'm glad to hear the lidoderm patches have given you some relief. Did you ask about the topical anti inflammatory called voltaren gel ? That might be something else to add topically. I use that as well as the lidoderm. When the patch comes off for the 12 hours at night, my knee burning increases.

I'm glad you like the ellyptical . One of my OSs said it is very easy on the knees. I liked it so much I bought one for home use. My DH and kids like using it too. The one I have is programmable like at the gym or PT.

I had my follow-up appt with my shoulder doc. Since I saw him in Oct, the pain in back of the shoulder improved but the front, in the bicep tendon is just horribly painful and nothing has changed it. Half the PT exercises aggravate it. When PT ended at the end of Dec , I thought maybe just taking a break from PT would help , but it did not.  It is almost getting ridiculous to even report on my OS visits.  I almost burst out laughing and crying at the same time when he said I would need surgery on my shoulder, since conservative measures, cortisone and 10 weeks of PT did not improve things and the fact that it has been in pain for 7 mos. Since I am having the ankle fusion next week and will take about 4 mos to recover enough. He will see me in 4 mos , at the end of May, to go over surgery. I am hoping for a miraculous recovery.....but 2-4 mos of crutches, NWB, for the ankle may totally do my shoulder in, rather than allow for any recovery. By the time I see him again it will be just shy of 1yr of pain in the shoulder. From what I gathered from the OS and PA, I would be having decompression, bicep tenodesis and debridement and repairs to any tears.

2009 is coming in with a bang.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on January 15, 2009, 04:29:34 PM
Pam:

Looking forward to a series of surgeries has got to be daunting. I know several people who have dealt with multiple surgeries seemingly at once and it is a drain on the system. But in some ways, you can be in the recovery mindset all at once and then put it behind you. You're right that being on crutches probably won't be good for your shoulder. Have you thought about the "athletic" crutches that put the weight on your forearms?

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: skibum9 on January 22, 2009, 12:30:52 AM
Hi Pam

Just wanted to send some good luck your way for your upcoming ankle surgery. When you feel up to it, let us know how you are doing.

Sharon
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on January 22, 2009, 01:56:42 PM
Pam:

I'll add my good luck, too. Hope everything goes exceedingly well!

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on January 23, 2009, 05:12:38 AM
Hi Sharon and Janet

Thanks so much for the good wishes for tomorrow. I have to be at the hospital by 8 and surgery should start about 1-1 1/2 hrs later. It should take about 3-4 hours.

I had to have a stress test this week to be cleared for surgery because I have now developed high blood pressure which they feel is from the pain process. I now am taking Lisinopril for BP.

Had a meeting with my PM shrink and he feels that I have been dealing with way too much pain and orthopaedic problems for almost a decade now and says I am showing signs of post traumatic stress syndrome. Had another episode during the night where I wake up , but I'm not really awake and grabbed DH arm with a death grip and acting very upset . Hmmm...this is scary, I have no idea I am doing this.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: TIBBAR on January 24, 2009, 09:32:42 PM
Pam
I have been following your posts for sometime now and it makes me realize how bad things could be. I most sincerly hope that at some point you do get your pain under controll. No one should have to go through all you have.
I will admit that this is kind of a selfish post. I had bilateral TKR in 06 with an MUA 4 mo later. Two years later I still believe there is more scar tissue knees are still not right. OS will not do anything because he is blaming the worst of it on my feet. Had tendon recon. 11 years ago on one foot. Since then other foot has gotten so much worse. Last Wed. I found out I too will have a triple arthrodosis (sp) as soon as I can get things ready. I live alone so I need to find a place to go to for a period of time. Everything you said in your post is exactly what my doc said will take place. I am much more scared of this surg. than the bilateral TKR. I wish I would have seen this sooner.
I am not on the forum much now. If after you get to feeling like you can post I would appreciate any words you would have on this op. Because of my work schedule I am trying to wait till maybe early April. I was off 4 mo with my knees and telling my boss I need another 4mo isn't going to be easy.
My email is on my profile if that is better for you, but I just got to know what it is like. I also have neuropathy on the bottoms of my feet and my neuro  doc has been trying for 2 yrs to find something that work sfor me. Sometimes I come home from work and strip my shoes and socks off. That is also what scares me with the cast on my foot.
I hope you get along well and will be praying that all goes your way for a change. Anything you can tell me would be so very much appreciated. Post here, PM, email anything to know what is ahead good or bad .         Tender hugs to all your body parts  ;D             TIBBAR (Carol) 
 
Title: Re: Open Debridement and Proximal Z-plasty
Post by: skibum9 on January 28, 2009, 03:03:07 AM
Hi Pam

We haven't heard from you, so just wanted to check in and see how you are doing. Hope all went well and you are recovering nicely.

Sharon
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on January 29, 2009, 03:52:09 AM
Hi Everyone

Sorry for the delay in writing. First of all , I was supposed to go home the next day which would have been Saturday. I didn't go home til Monday.

I don't know how much I'll feel like writing, as I'm still feeling bad. I had my calcaneous and talus fused. I think it is called an ST fusion. the incision was made about 5 inches long below my lateral malleolous. The joint was pried open where all the damaged cartilage was cleaned out. Then an incision was made on the back of the calcaneous/heel. This is where they took a bone graft from. They placed this bone graft in between the talus and calcaneous, then they placed a 3 inch screw thru both the bones , starting at the heel. Then He made an incision on the lateral side just above the ankle , along the fibula. This was to expose my previous fracture site. The fibula had grown a "knob" of bone out , so it was causing pain and catching. He sawed of this part from the fibula and smoothed it , then debrided a lot of scar tissue encasing the lateral tendons and ligaments.. I was placed in plaster slab around my foot like a stirrup that went up the sides of my leg. I will retain some up and down movement and some side to side . I won't have any rolling /rotating movement. I'll notice this more when I walk on uneven surfaces and I won't have to where any special shoes.

In the operating room they placed a popliteal nerve block in my lower leg. This was to provide numbing to the foot and ankle. A catheter would be left in place so I would get continuous numbing. I was then going to go home with this catheter and medication placed in a collapsable ball that would last 2 days. At the end , I would pull out the catheter and toss in the trash. I had general anesthesia. The surgery took about 2-3 hours. I spent 3-4 hours in recovery trying to get the pain under control. They were giving me fentanyl and dilaudid IV..

Getting the pain under control was the biggest thing going. Orally  I am taking oxycontin and morphine.

I'll write some more later when I feel up to concentrating and using my eyes ......lol

Thanks for all the good wishes. My first post op appt is Feb 3rd where stitches will be removed and then I will be casted.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on January 29, 2009, 04:16:17 PM
Pam:

I've been checking every day to see when you would post again. I figured you would "come see us" when you were ready. Wow, you've had a ton of surgery! I can imagine the pain was severe. Did the nerve block help? I had one in the femoral nerve with my MUA after my TKR. It stayed in for three days. A visiting nurse came to the house to change the medication bag every day, then we pulled it out at the end. It was stuck and we had to call the resident for instructions, but I eventually got it. Otherwise I would have had to go to the emergency room...glad I avoided that! I know how much it helped because it malfunctioned in the middle of the night on December 23 and a wonderful visiting nurse angel came to our house at 2:00 in the morning to get it working again. But during the two hours it was off, my pain was soaring.

Take care of yourself. Keep that pain under control. And write again when you are feeling more up to it.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: skibum9 on January 29, 2009, 11:04:24 PM
Hi Pam

Glad to hear that you are home. I still have bad memories of trying to get the pain under control after my MUA (the 4 epidural attempts), so I can feel for you.  I bet the lack of rolling/rotating movement is going to take a while to get used to once you are WB.

Hope the pain eases up soon. Take care.

Sharon
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on February 03, 2009, 11:54:00 PM
Hi All

I'm 11 days post op ST ( subtalar) fusion. Had my first post op check. Parking was a nightmare. This OS is located at our medical teaching hospital so parking is crowded. I had to go clear across the hospital to this office. I was worn out  :P :P  My temp cast was cut off and leg cleaned up. The incision sites were red but nurse said this was because of irritation from staples ,Hmmmmmm....I have staples and stitches. I had 20 staples removed which was downright painful esp removing from the heel. Doc came in was pleased with the way the foot is straight and I now have an arch. He went over the surgery again as I told him I was not with it when he visited in the recovery room. He decided not to put me in a fiberglass cast instead, he wants me in the CAM walker boot cast, but I am still NWB. He asked how I was doing on the pain meds and if I had enough. I said I did and went over the dosage. He said he did not feel I needed to start any weaning down instead he said to take them as I feel the need. I go back on the 12th for another post op check and to get the stitches out. I can move a little bit up and down but side to side elicits sharp pain. I pulled the popliteal nerve block after 5 days. It didn't hurt but felt strange. There was about 8 inches of catheter in the leg.

My knee has been burning more since I didn't get the lidoderm patches on for a several days. I haven't had too many episodes of throbbing probably due to the oxycontin and morphine I'm taking.

Tomorrow is a visit with the PM shrink.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: skibum9 on February 04, 2009, 12:51:45 AM
Hi Pam

I'm a big wimp when it comes to staples. I always ask pre-op and request they doc not use them. The thought of just having them pulled out gives me the willies. You would think the doc would think about how a fiberglass cast would rub on the staples and cause irritation, but I guess not.

Glad you didn't get recast with the fiberglass. At least with the boot, you can open it up every once and a while and get some air to it (and itch if necessary).

How is the shoulder holding up with all the NWB stuff?

Have a good visit with the PM shrink. I bet you have a lot to say and you will fly through your time.

How is the weather in your neck of the woods? It's just down right cold here. I think I need to move to some tropical paradise.

Sharon
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on February 04, 2009, 01:31:51 AM
Hi Sharon

I'm glad he didn't go with the fiberglass cast. This way I can keep an eye on the incisions with the redness. There was a lot of redness for just "irritation"

My shoulder has been hurting all the time. I guess fortunately , or , not, my ankle is out shouting the shoulder on pain but running even with the knee. I am getting the ball rolling on getting copies of my med record with the shoulder OS. I thinking I might go and get another opinion in a few months.

Burrrrrrrr...it's cold here too. I don't think it got out of the teens. Tonight it is supposed to get down to 3. At least there is no snow and by the weekend, it will warm up and we might have thunderstorms.

My daughter enjoyed telling me how she was laying out at the pool in the 80 degree weather today, or when she goes to the beach. She loved being home for Christmas but couldn't wait to get out of our cold snowy weather. When she went back to school, it was 90 !!! lol

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: skibum9 on February 04, 2009, 02:06:07 AM
Hey Pam

The thing with your daughter made me chuckle. I still remember when my sister lived in O.C. and would whine and complain when it dropped into the 70s and she would have to wear a jacket. Usually when I had pulled out the ski jacket and long johns.

I'm hoping spring comes soon. I'm just over winter. I used to say I prefer to visit my winter, opposed to it visiting me. Now I don't even want to see it.

Hopefully you can get through this NWB stage without too much aggravation to your shoulder. A second opinion is probably a worth while step in a few months.

Stay warm
Sharon
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on February 04, 2009, 02:25:10 PM
Pam:

It's good to hear you are progressing and your surgeon is happy. I'll bet you're glad to get that cast off!

My PM doctor's office was in the University of Michigan hospital complex and there was no parking close. We always had to get a wheelchair and go through the hospital to the other side of the complex for appointments....about a 20 minutes "ride" with my hubby pushing pretty quickly. Next time you go, have someone push you!

It's freezing cold here, too. It was 4 degrees this morning. We've only had one day above freezing in the last month, along with double our usual snowfall. It's supposed to get in the 40s this weekend...which sounds great except that it may rain and we'll have a huge mess with rain and melting snow refreezing overnight. This has definitely been a long, cold winter....and we've still got 6 weeks (at least) to go!

Take care of yourself...shoulder, knees and toes!

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on February 13, 2009, 06:17:59 PM
Hi All

I am now 3 weeks post-op from ST fusion, my how time flies !

I just had my 2nd post-op appointment. The doctor is still pleased how things  are going and asked if there have been any problems. The only one I have had is this boot cast. I don't feel it is keeping my ankle immobilized enough. I have the most trouble while sleeping in it. My ankle tries to roll , when it can't and that brings on a very sharp bolt of pain.The cast inflates, but it doesn't hold for long. He had the brace guy come in and put in a very nice foam pad in the ankle which was good because he said he would put me in a fiberglass cast if the padding did not immobilize enough. He wants me to stay NWB until March. During March I can try to put gradual weight with the crutches. He wants 1/4 body weight and to go up each week by 1/4 body weight, but only if it doesn't cause too much pain. He will see me on April 7th. At that appointment he will take xrays to determine how much bone growth has taken place and then decide if he will allow me  total weight bearing with the cast.  I also got my stitches out. I am still taking 10mg oxycontin twice a day and 15 mg morphine. I am now down to taking 1-2 morphine pills /day instead of every 3 hours.

The pain meds for the ankle have helped with the horrible throbbing nerve pain in the knee. I have not had as many episodes. The burning and sensitivity has not changed. The muscle spasms have gotten worse. They are more frequent and very intense.  I am taking Flexeril every 8 hrs. This will be brought up in my pain management appointment next week. I see the doc and the shrink.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on February 17, 2009, 02:32:02 PM
Pam:

You're right, time does fly. And I'll bet your glad about that right now...just to get through these first few months and get it behind you. It sounds like you are doing well. Good for you that you're able to back off the morphine! I'm glad you didn't have to get the fiberglass cast.

I know you're a good patient and will follow doctor's orders. Hang in there. The nice weather will be here soon and fresh air and sunshine will help your spirits.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: stupike on February 17, 2009, 11:49:03 PM
Hi Pam

As you checked in on me I thought I would do likewise. It appears you have been busy and I hope all is going well with your recovery. Glad to see you dont need a cast, I only had to have one for 2 weeks and that was bad enough, especially when they cut it off and I discovered some one had been let loose with a staple gun, no wonder it was so uncomfortable. Staples may save a lot of time post op but I can sooo relate to the torture of having them removed, especially when mine were removed by a student.

Take care, and good luck with it all.

Stuart
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on February 20, 2009, 04:35:07 AM
Hi All

Today was another appointment with the pain management doctor. We discussed knee pain ,ankle pain post surgery and weaning off the pain meds from surgery and getting back to the pain med before surgery. He is going to have me start weaning off of the oxycontin. I'll start taking 10 mg every am for 6 days then go to 10mg every other day for 6 days. I can take the morphine as i need and can add the percosets to it. We also went over the night time episodes and muscle spasms. He is going to increase the Cymbalta from 60mg to 90 mg every night. If this does not help then he is thinking of trying amyltriptalene. I am still on flexeril.

Something else they wanted me to look at was a new TENS unit and delivery system. A distributor came to the office with this product and they thought it would be something beneficial for me. It is a tens unit the utilizes a conduction garment, in this case, a knee sleeve. This can be used all day and under my knee brace. I'll probably give the distributor a call and get some more info.

Here is the website for this tens unit:

http://www.wecontrolpain.com/garments.html

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on February 20, 2009, 02:48:13 PM
Pam:

I'm so glad that you finally found a good PM doc. This is what they are supposed to do...constantly adjusting meds, finding new treatment options, etc. I think the new TENS unit sounds like it's worth a try.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on February 20, 2009, 05:25:00 PM
Hi Janet

What was interesting about this one, is what I read in the literature they gave me. They talked about different frequency settings and the affect it has on the nerve and bringing about pain control. All I know is my EMPI, which provided a constant buzz to over ride my brain from feeling pain....... different frequencies, such as a low frequency, endorphins are released, which provide slow acting,long lasting opioids for long lasting pain relief..at a higher setting enkephalins are released that are fast acting, short term natural opioids for pain relief. Edema reduction is done thru muscle fibrillation which causes fluid to move thru the muscles. I've never read an explaination about the release of these natural occurring opioids before.

Now, it sounds good but, I am always skeptical, because I have an EMPI nmes/tens unit already. I'll give them a call next week

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: lenorem9 on February 21, 2009, 03:09:31 PM
Hi Pam, I read through some more of your posts.  Now I understand more about your pain and meds.  You've had a real battle that's for sure. 

I'm glad to hear your pain management doc is working on new options.   Hope the new TENS unit works great. 
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on February 22, 2009, 07:54:05 PM
Pam:

No wonder you're skeptical after everything you've tried that hasn't worked. But like we always say...it's worth a try! And as always, I hope it gives you some relief.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on March 07, 2009, 01:42:39 AM
Hey All

I had another appointment with PM doc. Since I last saw him, I've been weaning down from the oxycontin and will be completely off them on Sunday. Next is the morphine. I will follow the same schedule as the oxycontin taking one each day for a week , then 1 every other day for a week.The goal is to get back to percoset. My BP is still high despite the fact I take Lisinopril ,so he is adding Clonidine. Clonidine will take care of 3 areas, it will help with the withdrawl of the morphine, lower the BP more, and with the jerky movements , which he calls myoclonic muscle movement. I'll start out with one and will go to 2 pills if BP does not go too low. He also may increase the neurontin by 300mg at night.

I got in touch via email with the rep for the conduction garment. I am very interested with this way to do TENS. It will cost me $225. She will give me the control unit for free. My only problem will be if it will work with my knee brace. She will meet with me at the PM clinic to see if it will work with the brace , unfortunately, I have to put it on hold, til I meet my $3000.00 deductable.   :o

This week I started putting 1/4 weight on my foot in the cast.  ;D

Pam

Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on March 07, 2009, 03:46:19 PM
Progress!! Good for you! I'm so glad you're weaning off some meds. I came off the oxycontin cold turkey (not planned!) and was miserable for a week. We weaned off the other meds and it was so much more comfortable and safer.

You finally get to put some weight on the foot. That's really moving forward. Good for you! I hope the new TENS thing works out.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on March 09, 2009, 05:49:48 PM
Hi Janet

Thanks  ;D  I am really glad my ankle OS, knowing I was in pain management , made sure I was well covered on pain meds. He said he would keep me on them as long as I needed to have good pain control. I was able to determine when to start work with PM, on the withdrawl.


I've been very busy at hospital. Mom has been in and out of hospital 3 times, since Feb 1st. The 3rd time has been the worst. She has been in ICU on a ventolator. Her BP dropped , she could hardly breath and her kidneys shut down. As of yesterday, her kidneys are functioning better, but she doesnot hold her own when the meds to increase her BP are weaned down. I found out Friday when I talked to the DR , that she hadn't been getting her prednisone at all, so she had been off cold turkey and most likely went into an adrenal crisis, which is a life threatening condition.


Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: lenorem9 on March 09, 2009, 07:39:12 PM
Pam, It's great to hear you're putting 1/4 weight on your foot now. 

Hope your Mom is going to be OK.  That sounds very scary. 

Lenore
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on March 10, 2009, 02:06:15 AM
Hi Lenorem

Thank you so much for the get well wishes for my Mom. Today was not a good day. They did a dopler/ultrasound and found a large blood clot in her leg. Pulmonary doc says she probably had a PE but it was small enough to just be absorbed in the lung. She is on a heparin drip. He also said the clot could be causing her BP to continue to be low. She is on dopamine and Levophed too . She is still on the ventilator. Sometimes she will wake up a bit when they decrease her sedation. She does answer questions appropriately with hand squeezes and nodding her head, so that is good.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on March 10, 2009, 02:52:13 PM
Pam:

I'm so sorry about your mom....both for her and for one more thing for you to deal with. I sure hope she'll recover quickly and well. The ICU is not a fun place. My prayers are with you.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: lenorem9 on March 10, 2009, 04:11:09 PM
Hi Pam,

How's your Mom doing today?  Any better?  Hope so. 

Lenore
Title: Re: Open Debridement and Proximal Z-plasty
Post by: skibum9 on March 10, 2009, 11:26:50 PM
Hi Pam

Hope your mom is doing better today.

Sharon
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on March 11, 2009, 03:18:04 AM
Hi Janet,Sharon and Lenorem,

Thanks very much for your get well wishes and prayers for my Mom. Things aren't much better. She had a CT of the lungs and fortunately she did not have a clot in the lung , but has a large clot in each leg. She still is not handling any weaning off the BP meds. She has become harder to arouse despite the fact they are not giving her sedation for the ventilator. She can weakly respond with a hand squeeze or a nod.

Please keep your prayers coming.

Thanks

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on March 13, 2009, 04:12:03 AM
Hi All

I just wanted to report all your prayers have helped.....Mom has improved enough today, so they took her off the ventilator and she also has been off the IV BP meds and is holding her own BP. Her hemoglobin was 8 , so she received 1 unit of blood today. She tried to talk but is still weak and a little hoarse, so she could barely whisper. If she continues to improve she might be able to make it back to rehab center next week, to recover.

Thanks for all the prayers !!!!   ;D ;D ;D ;D

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: lenorem9 on March 13, 2009, 09:16:59 AM
Pam,

I'm so glad to hear that.  What a relief.  Hope she continues to recover quickly. 

Have a great day!

Lenore
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on March 13, 2009, 01:26:53 PM
Pam:

That is very good news! I firmly believe in the power of prayer. I'm glad things are looking up and hope your mom (and you!) continue to improve.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on March 24, 2009, 04:22:56 PM
Hi All

I have some really sad news to report. My mother passed away yesterday. It was a very trying day for my brother and I .

Pam   :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'(
Title: Re: Open Debridement and Proximal Z-plasty
Post by: lenorem9 on March 24, 2009, 04:46:58 PM
Pam, I don't even know what to say.  I'm so sorry.  Please know that we are all thinking about you and your family.
Title: Re: Open Debridement and Proximal Z-plasty
Post by: skibum9 on March 24, 2009, 05:18:21 PM
Pam

I'm very sorry to hear of this news. You and your family are in my thoughts and prayers during this time of sorrow.

Sharon
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Roma on March 24, 2009, 07:16:09 PM
Pam,   I am so sorry to hear of the loss of your mother.  I  believe God will get you through this difficult time.
          Please know you are in my prayers.  I have been following your progress and am always interested in
          your posts.



         Roma
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on March 25, 2009, 01:02:28 PM
Pam:

I am so sorry to hear about your Mom's passing. All day yesterday I kept thinking I should ask how she was doing, but didn't get a chance to get online to do it. So maybe I was feeling your "vibe" long-distance. Although we've never met, we do have a connection!

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on April 07, 2009, 11:12:35 PM
Hi All

Thank you so much Sharon, Roma, Janet and Lenore, for the condolences on my Mom's passing. It has been very draining and overwhelming. I had to be in charge of the whole process, funeral, service, obituary,marker, and after burial lunch. Now it is just my youngest brother and I going thru a house lived in 50 yrs and 7 people's belongings....4 of which are dead. It is an overwhelming task.Plus arranging for an apartment for him to live in , after caring for Mom at her house, so many years. My oldest brother bailed on us after the funeral,because he lives out of town.....he could have taken a leave of absence to help out or helped financially !!!!

I saw the OS for my ankle fusion today. I am just over 10 weeks post op from fusion. Xrays were taken today which showed the bones a little further apart , rather than growing together. I had experienced what felt like something "give" , last week when I turned to look at something, I felt it and had a feeling something might have happened. So He wanted me in a fiberglass cast for better immobilization , instead of the boot cast. I now have a green cast on my lower leg. I have to keep it on 3 weeks and NWB again, then more xrays .

The nerve pain has been more active during all the activity lately and the fact I am now off the morphine and oxycontin and back on percosets. Of course this means my BP is high ( running 190's -150's over 90- low 100"s) so those meds have been increased. I see PM doc tomorrow.

When it rains , it pours......

Pam

Title: Re: Open Debridement and Proximal Z-plasty
Post by: skibum9 on April 08, 2009, 01:49:31 AM
Pam

Sorry to hear about all the drama. Remember to take a few moments for yourself every once in a while.

Hope the PM doc can help calm things down a bit. I can only imagine your nerve pain, since mine is just a fraction. Hang in there on this front.

Wow, three more weeks NWB. YUK!! Has the ankle doc tossed out any thoughs, or is it just wait and see status?

Tossing some good wishes your way that something works out in your favor.

Sharon
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on April 08, 2009, 02:01:24 PM
Pam:

I hope the rain stops soon....or at least turns to a gentle, cleansing shower! Sorry you're having healing problems with your ankle. You sure are dealing with a lot right now, emotionally and physically. I'll continue to keep you in my prayers.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: lenorem9 on April 09, 2009, 12:00:59 AM
Pam, you need a new umbrella.  Wow!  Losing a Mom is enough without alll the other crap too.  Hope you're coping OK.  That's pretty crappy of the sibling that bailed on you all.

May your rain turn to sunshine and all your pains go away!!!
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on April 09, 2009, 05:24:15 AM
Hi All

Thanks again for your much needed support. Today was another appointment with PM doc. He is increasing my Neurontin from 900mg /day to 1800mg/day . I am not thrilled in the least bit about this. I've tried 2 times in the past to get to that dose ( different Drs) and did not tolerate it, but I'll give it one more try. I am to start with the night dose for 3 days, then add 2 pills to the morning dose, then go to 2 pills on the afternoon dose. I'll do this for a month and see them again.

You know how I said when it rains, it pours......well I am in a flood.......tomorrow I have to have a root canal, as if it couldn't get any worse. I thought all the pain I was having in my mouth was from clenching my teeth for the last couple weeks.

Throw me a life saver, I'm drowning.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on April 09, 2009, 01:52:49 PM
Pam:

The pain in your mouth that caused you to need a root canal could definitely be from stress....not that you're having any  :-[. When my mother-in-law was dying, we had to bring my college-age daughter home early from a semester studying in Spain. With all that stress, she developed a horrible abcess and had to have a drain put in, then a root canal. The dentist said it was definitely from the stress. Your body is probably running out of ways to deal with all the stress you're under :P.

I can't remember the mg of neurontin I was on, but I know I took two pills three (or four?) times a day. I didn't like it, but I liked the pain a lot less! Hope you can tolerate the higher dose this time and get the relief you need.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: cudos on April 09, 2009, 04:33:12 PM
Hi Pam,

Sorry to hear you're still battling the inflammation in the knee. I see you were trying to ditch the celebrex, it can be hard when you depend on anti-inflams. I can't take them for any length of time, my stomach won't tolerate it.

I have been taking something called Serrapeptase, Its suppose be a very good alternative to nsaids with good results. Its made from an enzyme of the silk worm. Its suppose to eat inflammation and edema and scar tissue.
it can't hurt to look in to it.

The place I get it from tells me its one of there best sellers, its quite popular overseas. I have no proof of whether it works, I just started taking it 2 days ago and my knee feels better today than it has? coincidence? maybe, but when you're desperate why not try.

Also, Pam please except my deepest sympathies on the loss of your mother. These are obviously very trying times right now for you. You're in my thoughts.

Bob
Title: Re: Open Debridement and Proximal Z-plasty
Post by: skibum9 on April 09, 2009, 06:14:38 PM
Pam

Sorry to hear about the pain in your mouth. Look on the bright side, some one identified the problem and has a solution. I have seen 4 doctors for my jaw/tooth pain and all told me to get my knee fixed. So far that's not working for me.

I sure hope some good luck comes your way. I know it's tough, but keep hanging in there,

Sharon
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on April 10, 2009, 12:28:10 AM
Hi All

Thanks again guys....Janet ,Bob and Sharon ....I need plenty of sunshine rays to dry up all this rain in my life.

Today I saw the Endodontist. He took xrays and said I had a large infection under my previous root canal tooth in the jaw. I had a root canal on this tooth 30 yrs ago. He said no wonder I had so much pain and pressure. Well this kind of scared me because I take Actonel for my bones and had read a while back about the connection with osteoporosis meds and osteonecrosis in the jaw . I asked about this and told Dr I was on Actonel. He couldn't give me an assuring answer and said I could have some osteonecrosis. He said it's about a 2-4% chance , then I replied I have been the 1% on everything medical.  :o  He said we need to get the infection under control since the pain was well into my jaw. He did another root canal and said there was alot of infection draining out ( sorry for so graphic) then temporarily filled using some sort of very strong med in the canals. I'm also on high dose Keflex a couple weeks. He said things might get worse for next 2 days before getting better and to call him day or night for any change.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: skibum9 on April 10, 2009, 03:14:24 AM
Hi Pam

I'm issuing an executive order - no more bad stuff for you. Yikes on the infection!!! Do you need to get the knee prosthesis checked out?

Sharon
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on April 10, 2009, 05:00:39 PM
Yikes is right! Ugh. My mom once had an infected tooth that was so bad they almost put her in the hospital. The infection had spread to her jaw and down into her neck. I'm glad you're on the strong antibiotics so they get this infection under control!

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Roma on April 10, 2009, 08:36:30 PM
Hi Pam,

I am so sorry to hear of all your struggles.  I got up this morning and it was cloudy (AGAIN) and I was hurting
everywhere.  I felt like having a good pity party.  Yesterday, my left foot began hurting me out of the blue
on the bottom right up between my big toe and the one next to it.  I have hardly been able to walk so I
am going to the doctor today.  I wouldn't have been surprised if it would have been my right foot because
that is my worst leg.  I just feel like I can not gain on all this no matter what I do.  However, after reading
your post, I cannot even imagine doing all that you have done the past two weeks with all your issues.  I can barely get the basics done.  We are traveling about 140 miles to my daughter's for Easter and that even
seems overwhelming.  I am currently trying to keep bursitis and iliotibial band syndrom under control.  It is
hard to look forward to anything when one is always in pain as you well know.  At least we can sound off
a little to each other.  I needed to today.  Bless you Pam.
Title: Re: Open Debridement and Proximal Z-plasty
Post by: lenorem9 on April 12, 2009, 10:28:31 AM
Pam,  I can't believe you're having teeth problems on top of everything else.  Hope the infection is getting better not worse.

I'm using your Cinci tourist info to get out a bit this weekend.  Went to Newport yesterday and drove around downtown Cinci a bit.  Went to see Cirque Fantasy at Arnoff Center and today we'll go check out the Castle in Loveland.  I don't think it's open on Easter Sunday but at least it will be a nice drive.  I'd like to check out some of the Miami River area too.  You mentioned it was a nice drive.  Thanks again for sharing your travel info for this area.   It's nice to get out of the hotel room a bit. 

Hope you're able to enjoy Easter with the family. 

Lenore
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on April 28, 2009, 04:03:50 AM
Hi All

Tomorrow marks 3 weeks with my ankle in a cast. I have another appointment with that OS and xrays. I'm anxious to see if there was any bone growth at the fusion site.

Wish me luck.  ::)

The knee has been terrible, can't wait to see PM doc !  I'm going to see if I can get it injected and numbed up.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: lenorem9 on April 28, 2009, 06:13:18 AM
Good luck at OS with that ankle Pam.  3 weeks in a cast is a long time.

When do you go for another injection in the knee?

Any progress with the teeth?  Hope you're feeling some better there.

Thinking of you and wishing for less pain all over. 

Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on April 29, 2009, 01:19:03 AM
Sending you lots of luck!!!! Let us know how it goes.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: skibum9 on April 29, 2009, 02:24:02 AM
Here comes the luck your way. Let us know what the docs say.

Sharon
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on April 29, 2009, 05:44:13 AM
Hi All

Thanks for all the good thoughts. Seeing this OS is like seeing Dr Noyes....it takes all day. He is one of the top 3 foot/ankle OS in the nation. My cast was cut off and felt so good to get it off, then xrays were taken. OS brings xrays in and showed me where there is some bone growth but definitely not healed. He said another 6-8 weeks.  :o   Back to immobilization. He said he was not putting me in a fiberglass cast but a different boot than the CAM walker. This one is just like a cast. It is hard all around and fastens just like a ski boot. It holds like a cast. At least I can shower without it , unlike the fiberglass cast. I can start back to gradual weight bearing again. He wants me back in 6 weeks for xrays.

Tomorrow's another PM shrink visit.

Still working on Mom's house.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: cudos on April 29, 2009, 03:53:41 PM
Hey Pam just wanted to say hi  :)

Man it never ends huh  ::)

Cheers,

Bob
Title: Re: Open Debridement and Proximal Z-plasty
Post by: skibum9 on April 29, 2009, 08:50:51 PM
Pam

Can't believe that it still has that much healing to do. Did the OS offer up any reasons why it's taking so long? Anything that can be done to speed up the process?

How has the shoulder been holding up with all this crutching around?

Take it easy on Mom's house. I sure hope some one is helping you out.

Take care and I hope the PM shrink has some words of widsom for you.

Sharon
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on May 01, 2009, 04:10:18 PM
Ah, a shower. That must have felt good! Sorry it's taking so long to heal. Was this expected? Like Sharon, I'm wondering why it's not healing.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on May 01, 2009, 06:55:08 PM
Thanks Bob, Sharon and Janet

My OS was a little surprised about the healing. Ankle fusions are kind of tricky that way. I'm on the outside fringes of tolerance. OS did ask me if I had a bone stimulator from past ortho problems. I think if it doesn't heal during this 6 week period, I might be looking at more intensive treatments. I was hoping by 4 mos to be done...completely healed so I could travel a bit this summer.

Sharon: Younger brother is helping with the house too. It's really hard to whittle a persons life down to a box or two and we have to do this to 4 deceased family members. Very sad.

I'm going to talk to PM doc next week about going back to just 900 mg Neurontin. I experienced weight gain on this dose, more than I want. The small amount of improvement does not justify the weight gain. The weight gain is bad for the TKR and BP issues.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: lenorem9 on May 01, 2009, 10:36:32 PM
Sorry that ankle is taking so long to heal Pam.  That has to be getting really old by now. 

Going through someone's things after death is so hard.  All the memories it brings back is so emotional.  I'm glad to hear your brother is helping. 

I really do hope you heal up soon so you can do that travelling this summer.  Where do you have plans to go?
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on May 12, 2009, 05:04:02 AM
Hi All

Last Thursday I had an appt with the PM doc. I had a difficult 4 weeks of pain in the knee, from the last time I saw him. I also told him I did not notice much improvement with the Neurontin doubled from 900mg to 1800mg/day. What I DID notice was about a 10lb weight gain  :o. I told him I wanted back down to 900 mg. I said the extra weight was not worth it, given little change in pain , but also bad for the implant and my BP. I had seen my PCP 4 days before and blood pressure was still high. I had a reading 2 weeks prior at 196/124. She has me taking Lisinapril 20mg twice a day. My pressures were still high with visit to PM doc and pain levels too. He has changed my Clonidine from 0.1 to 0.2/ twice a day. The clonidine also has qualities to help with the pain, according to PM doc.  He has added the Flector Patch for pain. I will wear this patch for 12 hours then wear the Lidoderm patch 12 hours. He consulted with one of the other PM docs about possibly doing an ablation or cryoablation to all these neuromas. I had asked if I was going to have these forever and if that was the case, I would rather see about getting them removed again. Because I was having so much pain, he did 5 nerve blocks , injecting all the neuromas. I was actually looking forward to getting them and had wished many times I could have had them done during the last 4 weeks. Unfortunately I had to go pack things to move from my mother's house and had a knee swollen like a cantelope afterwards.

I go back in 4 weeks where they have scheduled another 5 nerve blocks, for that time. I'll find out more about this ablation procedure too.

Still crutching around in a cast with the ankle.  :(

Gave Cinci a progress report about everything. I look to see them in July.

I'm looking forward to the end of May. I should be all done with getting Mom's closed out and brother moved.

Pam


Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on May 13, 2009, 01:13:36 AM
Pam:

With all you have going on, I appreciate that you take the time to let us know how you're doing. Sorry it isn't a better report, though. Just know that I send you good wishes even when you aren't posting!

I see my OS for a six-month check up next week. It's good timing because I've been feeling some catching in the patella tendon area...I have no idea what that could be! Other than that, nothing has changed, which is a good thing/bad thing.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on May 14, 2009, 04:24:21 AM
Hi Janet

I can't tell you how much I needed all those good thoughts you've sent my way. Things have been very overwhelming, medically and emotionally. I just tried to get my Flector patch script filled and ins won't pay. The price is $194.00 /per 30. I'm going to get back to PM doc and tell them ins won't do....but we will try and get an appeal. I don't think they will totally treat me with samples. 

I want to wish you well on your 6 months check with your OS next week. I hope everything turns out OK and he can find out what the catch is all about. I hope not scar tissue.....keeping my fingers crossed it's not. Please let me know.

Thanks for all your caring thoughts.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: lenorem9 on May 14, 2009, 11:32:25 AM
Hi Pam,  Just checking in to see how you're doing.  I'm sorry you are still struggling with everything.  I bet you will be soooo glad to get rid of that ankle cast when it finally comes off. 

I hope your appeal to the insurance company will pay for the meds.  That's pretty expensive. 

Good to hear you're making progress on your Mom's house.  Hope you're not overdoing it.

Take care and hang in there.

Lenore
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on May 20, 2009, 09:48:58 PM
Hi All

Janet : I hope your appointment this week went well and hopefully the catching could be explained.

Had appointment again with PCP. This high BP problem still marches on.  I informed her of the increase in the Clonidine by PM doc for BP , besides the increase in the Lisinopril. I also take Toprol XL 2x's /day. My BP did not go down but a few times. What is alarming to the doctor is the fact when it did go low, I felt light headed and faint. I took BP during this time thinking it was really low, like in the 90's. My low reading were around 110, give or take 2 pts. This reading used to be my normal reading !!!! The PCP said if I am feeling light headed at my previous normal reading which is not low, then my body has gotten used to having a state of high pressure in my arteries. She said I was on a tremendous amount of BP meds. My BP is on a rollar coaster of very high then low for an hour or 2. She is adding an afternoon dose of clonidine to see if we can keep it lower without rollarcoastering. If this does not work then have to ask Cardiologist. I said what can he do.....all my cardiac tests and blood work are OK....she said they may have to investigate the kidneys even tho kidney function blood work is fine. 

The only thing that made my day was the weather...it was sunny and 84.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on May 22, 2009, 03:18:44 PM
Pam:

I'll bet you never imagined that your knee problem could eventually lead to blood pressure problems. It's awful that the meds you need for one problem (your pain) so negatively your health in other areas. I'm sure the stress of it all, along with your ankle problem and your mom's illness and death, have also contributed. HOpe it all simmers down to a low boil soon.

Dr. Blaha confirmed what I expected all along. My x-rays all look great, so there's not a problem with the prosthesis and the cement is intact. My continued discomfort and limitations are due to the changes in my patella tendon due to the patella baja, the infrapatellar contracture, and the scarring left from so many surgeries. He said there were other refinements that can be done during the TKR surgery (besides what he did for the contracted patella), but they cause other kinematic problems, so there's no easy answer. He thinks (and I agree) that the catching I was feeling was really pinching. He said the way a prosthesis is designed doesn't exactly mirror the true knee and sometimes a bit of synovium can get pinched when you turn a certain way. Then it gets inflamed and pinches again, but the pinching actually causes that piece of synovium to die, so it doesn't happen over and over again. My pinching went away after a couple of days, so that makes sense. We agreed that my knee is good but not great, and this is just the way it is. I don't have to go back for 18 months (I can skip my annual check-in this year). It's hard to imagine that when I see him again, it will be four years! Of course, I can make an appointment any time if something comes up, but I don't expect that to happen. At this point, I'm happy to see him once a year for the next 20 years!

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Roma on May 27, 2009, 12:09:26 AM
Hi Pam,
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Roma on May 27, 2009, 12:23:01 AM
Hi Pam,
I haven't written to you for a while.  It sounds like you are still having your share of struggles.  I think I am finally getting things worked out so I can go see Dr. Noyes.  I am going to begin communicating with them very soon.  Is it best to call their office or e-mail them or write a letter and fax it explaining a little of your history.  I know that I have to get all my records and send, but should I contact them directly  or go through my OS?  I don't think my OS will think it is worth my time to go see Dr. Noyes, but that is only because he does not think there is any thing that can be done for arthrofibrosis.  I printed out all the information that you sent to Lenorem about
places to stay, and see, etc.  It has been very helpful. 

I continue to have one problem after the other and wish I could get on a plane and leave tomorrow, but I think it is going to be more like September before I can go.  I, of course, want my husband to go with me and this is his busiest time of year at work.  My right leg is so bad I don't think any more damage can be done by waiting.  I just want to get everything set up so I can get a date set in September.  I know I have to plan to stay there at least a month and I am willing to stay longer if need be.  Anything to get relief.  The worst thing is that I have AF in both legs so I know I am in for a long hall. 

I will be greatful for any help you can give me.  I know that you have had so many other problems, but are you getting a handle on the AF?  Is your leg getting better?  Thanks!

Roma
Title: Re: Open Debridement and Proximal Z-plasty
Post by: skibum9 on May 27, 2009, 01:17:48 AM
Roma-

I would call their office to schedule an initial consult, then ask when they want the records. I think it took me about 3 weeks to get in once I called. I believe I just brought all my records with me during my first visit with Dr. N. Unless your insurance requires a referral, there is probably no need to go through our current OS.

Sharon
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Roma on May 27, 2009, 05:42:14 PM
Thanks Sharon for the info.  That is what I will do.  I am assumiing that they do the consultation by telephone?
I have to admit I am a little nervous about all this because CC is a long way from Montana, but I guess I will just
plan to go and stay as long as I have to no matter what.  I don't mind staying the month, but because I have AF
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Roma on May 27, 2009, 05:48:58 PM
in both legs I don't know what they will decide to do.  My computer is playing tricks on me.  It did this last night too.  It is always the fear of the unknown that is the hardest to deal with.  Especially when you live so far away.
Actually, the surgery itself I am not that apprehensive about because by the time you have had 5 TKRs and a
MUA how much worse could it get?  And as you probably well know by the time you get to this point you'll do
anything just to get some relief.

Well I will keep everyone posted.  Thank God for all I have learned on this web site. 

Roma
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on May 27, 2009, 08:25:48 PM
Hi Roma

I felt the same way as you when it came to making a decision to go to Cinci. I was scared to death. I began emailing Dr Noyes director of medical research, Sue B Westin. She told me to make an appointment after she read a summary of my problems. Once I made the appointment, I felt great relief. I had to bring all of my medical records, xrays, MRI etc. Sue Westin also told me to write a brief summary in chronological order , of my knee history. If you want to talk to his med sec/RN Donna, she is very nice, but all you have to do is call and make an appointment , like any other Dr's office. Dr Noyes is at the Montgomery office only , which is about 20 min north of downtown Cinci.

You don't need your OS to make an appointment . I recommend you do it on your own. Your first appointment will only be a consult. Any surgery will be scheduled at a later date, so you would only need to make a hotel reservation, Plan on spending several hours for your appointment, so bring a book. I am seeing him July 14th .

Are you planning on flying in , or driving?

Janet :

It sounds like your appointment went well. I'm so glad. It would have been nice not to have the patella baja and IPCS complicate the function of your knee. I think when you have AF like we do, being able to have something function good, instead of great, is as good as it gets. Patella baja just changes the mechanics of the knee so much. Dr N had to cut my tibia at a special angle to acomodate my Delee osteotomy .

I hope things continue to progress for you as time goes by and you only need to see Dr B once a year. That would be a great knee !

I saw my OS for shoulders yesterday for a re-evaluation. There has been no improvement and more deterioration so this Fall I will be having shoulder surgery. I'll be having AC joint excision, subacromial decompression with acromioplasty and biceps tenodesis.. It will take 6 mos to recover.

I also hate ( embarassed) to report that the past 4 mos, I have had a horrible time with carpal tunnel in my R hand. The numbness, pain and tingling in my thumb,index and middle finger 24/7, have rendered my hand useless at times. I think it is from all the crutch use. Anyone have carpal tunnel ?

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Roma on May 28, 2009, 12:50:30 AM
Pam,

Thanks for responding.  I just wanted to comment.  I have not had carpel tunnel yet, but believe me I am experiencing  lots of other things.  I have the iliotibial band syndrome and  have had bursiitis in both hips as a result.  My back was already very bad before any of this began and now I cannot sleep at night because my shoulders ache me so bad.  I also have a very sore spot in the ball of my foot which I am sure is from compen-
sating for my knees.  Then to top it all off this past week or so I have been having severe muscle spasms in
between my shoulders when I sit or stand too long.  I am beginning to feel like I am falling apart all over and
yes I understand when you say you are embarrassed because it is hard for other people to believe so much
could go wrong just from having a couple of knee surgeries. 

Roma
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on May 28, 2009, 09:55:46 PM
Pam:

I developed mild carpal tunnel after I broke my wrist years ago. Wearing a splint at night really helped. It usually doesn't bother me too much anymore, but if it does, I dig out the splint and use it until the pain calms down. But just last year I had an episode that required anti-inflammatories and the splint for several weeks. Luckily, I seem to be able to keep it under control this way.

Using the crutches following my surgeries always set it off. It was a no-win situation. Plus my wrist doesn't quite bend all the way, to I had to use an uncomfortable position on the crutches.

You are getting close to matching my mom  :P! She's had two knee replacements, a hip replacement, and a shoulder replacement. She needs another shoulder replacement but has put it off. She could also have surgery on her foot, but has refused so far. But she's 84! We may just need to pull out the duct tape to put you back together again!

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: lenorem9 on May 29, 2009, 08:33:36 PM
Hmmm...maybe duct tape with a cotton wrap underneath.  She seems to keep hurting herself. 

How's the ankle doing Pam?  Hope you're getting closer to getting rid of that cast.  So sorry to hear you're having blood pressure problems now too.  Could it be all whacked out because of all the stress you've been under lately too?

Hope something is going your way and you're still your usual upbeat self.  Keep fighting and smiling.   :D 
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on May 31, 2009, 05:51:43 AM
Hey Lenore and Janet

I have about 2 more weeks with the cast , then more xrays, then the verdict.

Hahaha...Janet, I feel like I'm 84 at times. The carpal tunnel is driving me nuts. I have been wearing a short velcro wrist brace at night. It just does not help. My 3 fingers get entirely numb, feel swollen, won't bend and the throbbing pain in the base of thumb. Sometimes the horrible throb will radiate up the arm to the outside elbow and halfway up the upper arm. It gets very tender to touch at this stage. It will wake me up with pain. My finger tips are numb 24/7and if I grip something then the fingers get entirely numb. I hate to see someone for this too, but it has been going on for 4 mos. UGH !  >:(   I wish there was a smiley character tearing it's hair out, that would be me !!

The high BP was caused from the intractable nerve pain. When you have that type of chronic pain, it causes changes in Heart rate and BP. That's why I have to take BP meds. I am checking into researching persuing the removal of these neuromas gain. I just don't want to be medicated the rest of my life. I see my PM doc this week and will discuss this and possibly from a plastic surgeons skill with peripheral nerve experience.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: skibum9 on June 01, 2009, 01:04:21 AM
Pam

I sure hope the verdict is favorable in a couple of weeks and you can get rid of the cast. How much weight bearing are you allowed at this point?

Are you sure the problem with your fingers is carpal tunnel? I used to get similar symptoms from a pinched nerve in my neck.

Sharon
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on June 01, 2009, 05:43:51 AM
Hi Sharon

I am weight bearing using a cane and when I have a long distance to cover ,like a mall, I use crutches.

I'm pretty sure it is carpal tunnel. I have all the classic signs. I discussed it with my shoulder OS and he referred me to a hand specialist. It gets so bad at times my hand is not functional and if I straighten my fingers out the pain is horrible. I feel like a troll in the morning as I hobble to the bathroom with limping, cane, shoulder and crippled hand. YUK !  I am so sick of nerve pain issues.

What next  :P

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on June 02, 2009, 01:40:59 AM
Pam:

I'm sorry your carpal tunnel is so bad. I know many people who have had the surgery for it and had great results. I know the last thing you want is more surgery, and it would be very difficult in your situation with the crutches. Maybe the hand specialist will have something he can do until you are off the crutches and cane totally and can give your wrist a rest.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on June 02, 2009, 03:07:52 AM
Hi Janet

Yes, this carpal stuff is driving me nuts. I am constantly rubbing my fingers and shaking my hand. Thru out the day it ranges from just the finger tips numb, to whole fingers tingling , then all numb and stiff and throbbing. I'll have to make an appointment and like you said see if there is something to be done in the meantime. Maybe they have a better brace but this happens thru the day and the night. The throbbing is the worst pain of it. Unfortunately I use the cane for the knee too. I'm fortunate it is in my right hand and not the left since I'm a lefty. I can see how this would be very debilitating to someone who works using their hands a lot.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: lenorem9 on June 02, 2009, 01:51:26 PM
Yikes, not another surgery...but yeah, I've known several people that had the carpal tunnel surgery and it didn't look so bad.  Needing that hand for your cane sure complicates things.  Nothing is ever easy for you Pam.
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Roma on June 02, 2009, 05:01:20 PM
NOW WHAT DO I DO?   I finally called Dr. Noyes office and his secretary said He is not taking any more patients that have had total knee surgery by other Drs.   I do not know whether to cry or what.  They said to call the Cleveland Clinic and talk to one of their OS's.  I tried to explain my situation and that the reason I called there was because I was under the impression that he did take TKR patients.  I asked her if she had any reccommend-ations because I know I have arthrofibrosis and there is no one anywhere near me that knows how to deal with this.  Would you advise me to write a little of my history and fax it to them?  I just don't know where to turn.  Do you know of other doctors in the Cleveland Clinic that deal with this and one of the reasons I was willing to go there to Dr. Noyes was because of his physical therapy.  I will not go through anything unless I have people working with me that know something about this. 

Roma
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on June 02, 2009, 10:12:50 PM
Hi Roma

OMG! Did you talk to Donna, she is his med secretary or someone in the office to schedule appointments. Did you tell her the main reason was for arthrofibrosis ?  Dr Noyes has a partner, Dr Tom Lindenifeld who also has treated and written articles about AF . One of our long ago AF posters used him for AF and had wonderful results. I don't know if calling him would be an option.

I don't know of anyone at CC but came across the following when I was searching. It mentions AF after TKR in the second paragraph in his bio

http://my.clevelandclinic.org/staff_directory/4/staff_3857.aspx

The other option is Janet's Dr Blaha in Michigan

Dr Bach at Rush University in Chicago      http://www.rushortho.com/cv/cvBach.pdf      here is an article he co-wrote on AF

http://www.bachmd.com/Articles/Arthrofibrosis.pdf

You can write your history and fax to them and see if you get a better response and emphasize your AF as the reason . This is a big blow and loss of an AF exoert for AF TKRs

Pam

Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on June 03, 2009, 02:06:39 PM
Roma:

I answered you in your other post.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on June 05, 2009, 04:11:39 AM
Hi All

Today was my appt with PM doc. Dr did 6 injections of bupivicaine again. We locate the 6 neuromas and mark them , then he injects them. You can feel the balled up tissue, it is very tender to touch. They like to roll around while he injects them. Most of the time he can get the injection right in the neuroma and boy do I know it. It will make me jump in pain. These injections provide me with 12 hours of no pain, then a gradual return of burning, needle sticks and throbbing over a 2 week period. Since I have been more active moving about this has caused pulling on the scar tissue neuromas, increasing the pain. The PM doc said next appointment would be either radio frequency ablation or cryoablation to the neuromas.

PCP added and increased afternoon dose of BP med. Today was the lowest my BP has been at PM doc at 148/98. I've usually been 170-190/100-110.

So, enough is enough, how much more ??..... today I was called by GYN office and told my PAP smear came back abnormal, so now I have to go in next week to get a colposcopy and possible biopsy !!!  Anyone have experience ?

I'm trying real hard to stay positive and think happy thoughts here.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: lenorem9 on June 05, 2009, 01:29:17 PM
6 injections that make you jump in pain?  Ouch!  Doesn't sound like any fun at all.  And only for 12 hours of pain relief?  Ugh!  Hope the radio frequency ablation or cryoablation works better and is less painful.

Your blood pressure problem sounds pretty scary.  Good you're staying on top of it. 

Yes, enough is enough....I agree! 

Don't stress about the bad pap.  I've had plenty over the years and had a colposcopy too.  A lot of things can cause a bad pap and usually the repeat pap is fine.  The colposcopy wasn't bad from what I remember.   A little crampy and achy but compared to your knee pain it will be a piece of cake.

Hang in there Pam, we're all routing for you.

Lenore
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Roma on June 09, 2009, 11:08:39 PM
Hi Pam,
    Well I did decide to write my history and fax it directly to Donna.  I just heard back today.  They want me to have an X-ray taken of the AP/Lateral of the knees and send it to them so they can review them.  She said she would try to hold some September dates open for me, which is what I requested.  I would like to go tomorrow because I have been so miserable, but by September both my husband and I can go and stay as long as necessary.  She did say if I had to  have another revision that Dr. Noyes would refer that out.  I do not think
I need another revision.  I think it is purely scar tissue.  I expect to have to have open debridement because I have so many things involved as a result of the scar tissue.  If they think I need another revision I don't know what I will do.  I have to tell you that I might sould like a big baby, but 5 total knee surgeries have about finished me off.  The surgeries were bad enough but it has been all the aftermath that has almost taken me out.  Somebody asked on here once if anyone ever died from AF.  I am sure all of us on here have had days when we thought we were going to.   I also have to say that I am very NERVOUS about everything, because this really probably is my last chance to get some help.  God help me if it doesn't work.  I just have to have faith that this time with good therapy it will help.   

I am so sorry to hear about all of your difficulties.  After all that you have been through I should not complain one bit.  I appreciate all of the help you have been and the info that you have given out about CC.  I know that will make things easier for me.  I will keep everyone posted.

Roma
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on June 10, 2009, 05:04:42 AM
Hi All

Today was a visit to the ankle OS. He xrayed the ankle which showed bone growth basically the same as it was 6 weeks ago. He said he would need a CT scan to provide a more accurate assessment of bone growth, so he sent me off to have a CT scan of the ankle to assess nonunion of the ST fusion...just waiting for doc to call with results and go from there.


Hi Roma

I'm glad you didn't give up and wrote a summary for them to take a look at. Hopefully he will be able to find the problem and take care of it without referring you. I would think if scar tissue were the problem he would take care of it. I'm thinking he won't do revisions on other OS's TKRs that aren't caused by AF, but some other malfunction. At least you would have a consult and if he did refer you, you can bet it will be a well qualified OS. Please let us know any updates.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on June 12, 2009, 09:45:56 PM
Pam:

You must be beyond frustration with that ankle. I hope the CT scan gives some answers to what's going on. Have you had trouble with bone growth in the past?

Roma:

Good for you for not giving up! I agree with Pam that at least if he refers you to someone else, you can rest easy that you will be in excellent hands.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on July 01, 2009, 03:00:00 AM
Hi All

Yesterday was my monthly appointment with pain management. My Dr discussed the cryoablation with me. It turns out the hospital does not have the cryo machine anymore and I will have to travel to do this procedure. He told me that the University of Iowa med center pain management unit has a cryo unit. He is still on staff at this hospital and would be there in October if I wanted to go there for this. Cryoablation brings the best results when treating neuromas. I'll be finding out more info. I see Dr N on July 14th and PM doc wants me to discuss this with him I just want off the meds. He wrote a script for the clonidine ( catapres) patch. If the cost is affordable, he wants me to try this to see if some of the sleepiness during the day is cut back. We will also try going off Neurontin if the clonidine does not do it. Hopefully the cost will not be too much. The doctor did the injections to my knee. He injected 6 neuromas with the spinal marcaine. Unfortunately , when he is successful placing the needle in the neuroma, it is extremely painful to go thru, much less 6 times.

Two weeks after my CT scan for my ankle, I finally heard word from the OS's office. They said he wants to discuss the results with me and scheduled an appointment. It is a week after Dr N. I am kind of scared the results weren't good otherwise I would think they would have said the results were good and go ahead and start weaning out of the cast before I see him again.

I have finally had enough of the carpal tunnel problem and scheduled an appointment with a hand specialist , the last week of July. One thing my whole knee/leg problem taught me is to go to specialists in orthopeadics. Never go to a generic OS, go directly to the specialist in the problem area.

Had some happy and surprising news......our son and daughter in law announced they are expecting another child due at the end of January. This will be their 6th child. Their twins just turned 1 in April.

We went to California last week and moved college daughter's belongings into storage out there . We also went to LA to see where her next student housing apartment will be....in Beverly Hills across from the Grove. We went to the LaBrea Tar Pits and out to Santa Monica Pier. It was fun to see those places.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: lenorem9 on July 01, 2009, 01:16:48 PM
Hi Pam,  Thanks for the update.  More travel for you for this cryoablation procedure....UGH!  Sounds like it might be worth it though.  Hope you can do it.  6 injections into the neruroma?  OUCH! 

Hope you're wrong about the results of the CT scan on your ankle. 

Congrats on the new grandchild-to-be!  That's exciting!
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on July 04, 2009, 02:38:15 PM
Pam:

It sounds like the second half of July will be spent at a doctor. I know how tired I got of going to the doctor all the time, and I didn't have nearly as many things going on as you. And now you'll have to travel again for the cryo treatment. As you know, the travel can definitely be worth it, though. You must be really weary of all this, wondering when it will end. Glad you went ahead and made the appointment for your carpal tunnel. I agree about going straight to a specialist!

Glad you got your daughter set for the summer and you got a little vacation out of it. Take care of yourself.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Roma on July 07, 2009, 05:16:18 PM
Hi Pam,

I am still patiently waiting to hear from Dr. Noyes.  I sent them x-rays 2 weeks ago.  I can truly identify with all your problems.  My left foot has been giving me alot of problems lately and I think it is just from favoring my right leg so much.  Also my hips hurt too from just walking strange.  I do have AF in both legs so sometimes I don't know where I hurt the worst.  I asked for a September date with Noyes, but am wondering if I can last that long.  Some days I can hardly walk.

On a brighter note......I had 6 children.  I was married when I was 19.  My first baby came a week before my
20th birthday.  I had three girls and then I had twin boys.  Then I had one more boy.  All my girls were frilly,
well behaved, and quiet.  I thought I was an expert on child rearing and then I had twin boys that never sat
still a day in their life until they started watching football on tv at about 9.  My youngest boy was more quiet.
I had all 6 of these children by the time I was 26.  Looking back, I do not know how I did it, but I don't remem-
ber thinking it was so bad.  In fact, I loved being a mother.    No wonder my legs are worn out right?

I will keep you posted on what I hear from Cincinnati.

Roma
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on July 08, 2009, 05:12:13 PM
Hi Roma

Haha....I had 6 kids too, only they were spread out....I had 2 kids in the 70's, 2 in the 80's and 2 in the 90's. They range in age from 36 to 17 with 4 boys and 2 girls plus 7 grandkids. I started out young like you. My youngest will be a senior in HS in Sept. They all live near us, so we all get together often....oldest son loves to BBQ so he does the entertaining.

Sounds like we both are going through the collateral damage to the body from AF

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: skibum9 on July 11, 2009, 05:02:41 PM
Hey Pam

Have a safe trip to Cinci this week. Say hi to the gang for me.

Sharon
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on July 13, 2009, 05:05:05 AM
Hi Sharon

Thanks, I'll say Hi for you to the gang. I will look like the walking wounded with my leg in a cast, my wrist in a brace and using a cane. My PCP put me in a wrist brace for the carpal tunnel and she thinks I also have DeQuervain's thumb too. All I know is it hurts pretty bad to move my wrist,thumb and my thumb and 2 fingers are numb 24/7 on the tips.

We leave tomorrow for Cinci..appt is Tuesday.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on July 16, 2009, 02:46:30 AM
Hi All

Yesterday was my appointment with Dr N.  I hadn't been there since last September ,so there was alot of catching up on all my orthopeadic problems,,esp the ankle fusion. We discussed my pain management program and went over the Dr's progress notes. I told him I did not want to be on these meds for life..I don''t want the side affects and I don't want the high blood pressure . We discussed the cryoablation technique. Dr N said he used that on me and it did not work...lhe said it would last about 4 months at the longest. He feels I need to go to a specialist in peripheral nerve surgery. He wants me to see a Dr in Baltimore at Johns Hopkins hospital. His name is Dr A. Lee Dellon, he is a plastic surgeon and neurosurgeon. He specializes in denervation procedures where the nerve(s) is totaly removed leaving a numb area. He pioneered the procedure. His wedsite is
 
http://www.dellon.com/      They gave me a lot of literature on it. I just need to make the appointment and he will send of the letter of referral.  After talking to Dr N and spending time on the computer researching this, I feel I will probably go this route and hopefully be pain free..

Then he proceeded with the exam and my other questions. I told him about the increasing pain ,tenderness and feeling full around the patella tendon, particularly on the medial side. He felt around the area ,which was very tender. He said I had anteromedial scar tissue on the fat pad. He gave me a cortisone shot in that area to calm the inflammation and help with the pain. we are hoping this will not develope any further. I have been having extension problem with full extension where I feel my patella is hitting the bottom. My previous xray showed some baja of the patella. I went to PT where they gave me a new program that I can do myself and one that will be compatable to do with my ankle fusion and to accomodate the patella so I won't be locking in full extension from my patella.

I'm not really looking forward to traveling so far away, but feel good with the recommendation coming from Dr Noyes. Now I'll have to check with my insurance on this.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: lenorem9 on July 16, 2009, 12:27:51 PM
More cross country travel?  You're covering the country pretty well with all these docs Pam.  I've heard of that nerve procedure and it sounds very promising.  What a relief it would be for you to FINALLY be pain free.  Wow, hope you can do it and it works as advertised!!!
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on July 17, 2009, 12:43:38 AM
Pam:

Cincinnati, Baltimore, wherever...you know you must go where the right specialist is. At least this will give you the chance to have a "vacation" somewhere other than Cinci LOL! I guess it was one of those bad news/good news visits again. It sure is fantastic to have an OS who knows the specialists all over the country. And at least this should give you some new hope for those nasty nerves!

How's your ankle doing? Any progress on the bone healing?

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on July 22, 2009, 04:26:40 AM
Hi All

Today was my appointment with my ankle specialist. I am now 6 mos post op subtalar fusion. The whole appointment took 4 1/2 hrs , with 3 hours in the waiting room. I thought I was in Cinci, lol. As I should expect, I didn't get any good news. My CT scan showed nonunion and that goes along where my pain is. My OS is going to have me try the Exogen 4000 external bone stimulator to see if it will generate any bone growth. This is dependent on insurance coverage as it is very expensive. I will do this for 8 weeks and if no bone growth, then I will have to have surgery again where another bone graft will be taken from the hip and placed between the talus and calcaneous. I got fitted for another custom brace and should be ready in 2 weeks. I will be awaiting a call from the person who sets up the bone stimulator.

Thank goodness I have an appointment with my PM shrink tomorrow...I think I will need it

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Roma on July 23, 2009, 12:57:50 AM
Dear Pam,

I can only imagine the daily struggle you are having with all the things going on in your body.  I think my situation
is difficult and then I read about yours.  It is just the constant battle dealing with pain and not having a life.
I am still waiting to hear from Dr. Noyes.  I just pray that my implants are not loose again.  I guess I really should
have tried to get in sooner than September to see him, but I had hoped I could make it until then and then I can concentrate totally on possiblly getting better, and my husband and daughter can get away easier at that time too.

I know when I wake up every morning I have a horrible time just putting my legs out on the floor for another day due to the pain.  My hip is acting up again so went back on a Medrol pack.  Do you have help most of the
time?  How do you manage to walk? 

Please know that you are in my thoughts and prayers.

Roma
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on July 24, 2009, 08:06:20 PM
Pam:

I'm so sorry it was bad news. I hope your insurance covers the bone stimulator. And I hope it works. Must be awful to think that after all this time, you may be headed back to surgery. Too many things going wrong!

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: lenorem9 on July 27, 2009, 05:20:12 PM
Hi Pam,

I'm so sorry to hear of your ongoing battle with the ankle.  Hope you can get insurance coverage for the stimulator and not need another surgery. 

Thinking of you.

Lenore
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on July 29, 2009, 04:26:17 AM
Hi All

I've been in contact with Dr Dellon with the peripheral nerve surgery institute at John's Hopkins about the Dennervation surgery. I got pretty excited talking to him thru emails, he said I had been thru so much and he felt he could help me.  He said I would need an office consult to isolate thru local nerve blocks , which nerves were involved. Once they were identified, then I would come back for surgery. He said even though Dr Noyes cut out the neuromas and cauterized and buried the ends, the ends might have come out and/or new neuromas developed on other nerves besides the infrapatellar branch. He also said he wrote the chapter on nerves and pain in Dr Noyes new book.

It sounds too good to be true and it is......someone informed me he does not take any insurance, cash only. I emailed the Dr and said this drastically changed things , but I still asked how much. He said He would like me to come to see what nerves are affected because he felt he could really help me. He said he would do everything he could to make the surgery possible. My husband wants me to at least go for the eval and see what he says. This doctor has been on the Best Doctors in the US every year since i992.

I told him I would probably come see him as soon as my finances allow.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on July 30, 2009, 11:24:04 PM
Hi All

Still working with Dr Dellon thru emails to get this all to work out. He wants to see me in August and has named some dates for me.

Went to PM doc....the clonidine patch is not providing adequate control for the high blood pressure and I have had increased burning flare ups , so I'm back on the pills. My BP has not been below 150/85 and as high as 180/84 in over a week. I did not receive any injections today, although I could really use them, because if I see Dr Dellon, I want to have full pain so he can locate the nerves easier.

After the PM doc, I had appointment with a hand specialist. I found out I have an advanced case of carpal tunnel and will need surgery. I also have DeQuervains thumb/wrist. He gave me a cortisone shot in the wrist and if I do not get good relief then he will have to do a DeQuervain's release too. I am scheduled for surgery on Sept 14th.  If it is just the carpal tunnel, it shouldn't be too bad and a couple weeks to recover, the DeQuervain's release is a little more involved. This is a very painful condition and often times the tendon for the thumb catches on the wrist and snaps around.....OUCH!

Pam

Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on July 31, 2009, 03:56:15 PM
Pam:

Ah, good news and bad...why do they always come together? I can't believe there is a surgeon who takes no insurance! Why...just to cut down on his patient load? I'm sure it keeps more money in his pocket. It would be interesting to know what he charges his patients vs. what insurance would pay. Maybe he gives the reduced rate and cuts out the middle man? I just can't imagine many people would be able to afford this surgery.

Glad you have a plan for your carpal tunnel. I know how painful that can be.

Keep us posted about Dr. Dellon. Good luck!

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Roma on July 31, 2009, 04:30:58 PM
Pam,

It seems like things never end for you.  I can only imagine how hard it is to keep a positive attitude when you
are trying to deal with all the issues you are.

I just hope someday when this is all over and you are back to enjoyiing life, that you will take some time
to write a book.  Just call it, "Don't Tell Me About Pain!"  I will read it and pass it around to all my friends.

Roma
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on August 01, 2009, 02:27:43 AM
Hi All

Thanks Janet and Roma.  Haha, I think we ALL could write a book on our experience with AF and Pain. I get thru by laughing at myself and my PM doc has a great sense of humor. I really like this doc ..so much so that he will be the one doing an epidural injection of steroids into my daughter's back because she has a bulging disk, according to our neurosurgeon friend, who is taking care of her.

Well, unfortunately my schedule could not meet with Dr Dellon's scheduling for the month of August, or September nor most of Oct, so I have an appointment scheduled with him on Oct 27th. This is only for the consult and nerve block testing. Any surgery would be at another date/ If anyone is interested, you can down load off his website, all or part of his book called, Pain Solutions. It is only $6.00 per chapter to do. He suggested i download the chapter on Joint pain. I downloaded the First chapter and the 3 Chapter. It is very good. The more I read about him, the more I am impressed with his knowledge and skill with peripheral nerve problems and techniques to resolve them. He investigates to find the pain problem when other Drs give up.

Today , I met with the rep from Smith and Nephew to get my bone stimulator. It is a very simple , small unit using ultra sound. This type of ultra sound is different from the kind used in PT. This penetrates deeper and stimulates at the cellular level, to grow bone tissue. I only use it 20 each day, at the same time of day They did studies showing 20 min was the magic number. Anything longer or shorter made no difference in bone growth. The same goes for how many time a day.They found it only needed to be done once a day because the cells needed a full day to activate and start new growth. It is very expensive !!! I explained that some buy them off ebay. She said that is against the law because the unit is a prescription from a doctor and Smith and Nephew will not have a thing to do with it. They keep tabs on the units thru the ID # and original patient/ Dr's order . 

I'll start using it tonight and hope for the best.

pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on August 03, 2009, 02:43:15 PM
Here's sending bone-growing vibes your way!

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Roma on August 14, 2009, 04:53:56 PM
Hi Pam,

Just thought I would jot a note this morning. Actually, I am trying my best to be patient and stay calm, but
I am STILL waiting to hear from CC.  I thought by now that they would have called and given me a solid date.
When I wrote to them back in June I requested something around the 15th of Sept. and Donna told me they were trying to save me a date around that time.  I sent my X-rays as they requested for the Dr. to review and then I called about 3 weeks ago to make sure they had them and everything was being processed and Donna assured me that they would contact me as soon as they reviewed them.  I just thought that I would have heard something by now.  How far ahead do they usuallly contact you to let you know the definite dates?  I guess I
thought that they would contact me at least 3-4 weeks in advance.  I know they are very busy and I hate to
call and bug them again, but if we are going out we need to know the dates before long.  I have been mentally putting things together and making lists but I tend to be a "plan ahead" type person so now I am getting anxious.
Since we are traveling so far, I asked if I could have the consultation and then the surgery within a week or so.
She did not act like that would be a problem.
Well I just needed to express what I am feeling to someone.  I hope you are doing better.  It has been a long
summer for me waiting on this and I certainly am not getting any better.  I had to go back on prednisone because it does seem to give me some relief.  It cuts down on the inflamation and swelling.  Thanks for listening and any comments would be appreciaated.

Roma
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on August 15, 2009, 04:26:35 AM
Hi All

Today was my appointment with the neurologist for nerve testing on my hand. This test did not take long. They put some electrodes on my arm and hand/fingers and shocked my arm in a couple places. The Dr Said I did indeed have carpal tunnel in my R hand. The test showed blockage thru the median nerve. He tested my other hand because he said often times a patient will have it in both hands, Fortunately my other hand was OK for now. These test results were sent to my hand OS. I am scheduled for carpal tunnel surgery on Sept 14th.

My PCP is testing me for kidney function and insulin. I have a lot of signs of insulin resistance with my uncontrolled BP. weight gain esp belly and intense craving of sugar. She said it could be affected by the cortisone shots I've had. I've had about 14 or 15 of those with 2 this summer and last fall, plus all the medrol dose paks. She said it can have an accumalative affect.  ???  I had bllod tests and 24 hr urine. She said I would also either have a kidney ultra sound or CT scan to see how the vessels and renal artery are doing. If there is a stenosis in the renal artery causing BP to be high then they do a stent just like in the heart.

I'm still using the bone stim every night.

Roma

I would give Donna another call or send an email explaining once more about trying to arrange travel plans from Montana. I do know Noyes was not in the office a lot during the month of July. August starts a new round of Fellows so maybe he will be there more in August. Clinic days are very hectic and busy, so make sure you call on a M-W-F. It isn't that difficult to be scheduled. I've pretty much been able to call and get the day and time I need.

Make sure your prednisone use is monitored. It can be a wonder drug but also has bad affects, sometimes long term, on the body

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Roma on August 15, 2009, 03:06:36 PM
Dear Pam,
    Thanks so much for your reply.  Again, I feel terrible that you are suffering with so many issues.  I guess
that is one of my fears is that I am going to start having alot of problems in other areas.  I do have Af in both legs which is a challenge, my left hip is really bothering me, but it seems to be just from my IT band having scar tissue attached to it.  Also, my left foot is bothering me, I suppose from walking wierd for so long.  My shoulders
also bother me from pushing myself up and down for the past 6 years.  We did put my recliner on a platform so it would be easier.  Sometimes I feel like I am a total wreck.  However, I am very healthy in every other way.  No high BP, heart problems, or anything so I continue to try to be thankful for every good day even if they are few and far between.
     I am now only on 10 M of predinsone and my doctor agreed to let me take that much after a medrol pack so I can limp along until I get to CC.  That will be one of the first questions I will ask Donna--if I should quit taking it
before I come.  I just can hardly walk when I am not on it.  Plus I am in terrible pain.  It seems to relax everything
around my knees to some point where the pain is tolerable. 
      I guess I will e-mail Donna at the beginning of the week, because I feel I must know something soon.

Roma
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on August 25, 2009, 05:08:38 AM
Hi All

Today was another appointment with PM doc. I've been looking forward to this because my pain levels have been higher since I did not have the nerve blocks done last time. They weren't done because I thought I was going to go to Baltimore to see the peripheral nerve surgeon, but our schedules did not permit it until Oct 27th.

Today I had 8 nerve blocks done with spinal bupivicaine to the knee. I now have 8 neuromas in my knee, all to the medial side. My PM doc has never seen anything like this. I can't wait til I see Dr Dellon , Oct 27th. One neuroma is painful enough, 8 is unreal.

My BP is still high despite the meds. I see my PCP Sept 3rd to go over test results from all the labwork done.

Hand/wrist surgery is 3 weeks away.

Pam

Title: Re: Open Debridement and Proximal Z-plasty
Post by: lenorem9 on August 25, 2009, 12:02:41 PM
Hi Pam, thanks for the update.  Sorry you're having so much pain and not able to get any relief.  8 neuromas is crazy. 

How goes the bone stim?  When can you expect to see results from it?

Hope the hand/wrist surgery goes well and you can have some relief for one part of your body anyway.
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on August 25, 2009, 09:19:15 PM
Ahhh, those famous words we all hate to hear: "I've never seen anything like it." Aren't you really tired of that phrase??? Anyway, I sure hope the nerve blocks give you some relief.

Are there any special precautions the hand surgeon can take so you don't get too much scarring from the carpal tunnel surgery? Or maybe that isn't an issue with this surgery?

Still sending healing vibes your way.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Roma on September 05, 2009, 09:29:03 PM
Hi Pam,

I just had a question.  I know you have had a TKR, but I was wonderiing if you ever had scar tissue removed or other surgery on your knee after the TKR.  I guess I am wondering if they really will remove the scar tissue in my legs if I have
had TKRs and how else they would treat me.  I guess I know you can not tell me what they will do in my case, but was just wondering about you.  Thanks.

Roma
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on September 06, 2009, 01:39:30 AM
Hi Roma

To answer your question, yes, I've had scar tissue removed 5 more times after the TKR. I also had to have several other procedures done with each of those surgeries. Each time was done thru open surgery where he opened up my TKR incision. My signature line tells what was done with each of those surgeries. I have scar tissue again all anteromedially and on infrapatellar fat pad. He gave me a cortisone shot to that area to try and stop the inflammation. They've had me on Celebrex for almost 18 mos, to keep the inflammation down.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Roma on September 06, 2009, 10:44:01 PM
Pam,
It was good to hear from you.  In a way it helps me to know that they actually have removed scar tissue on a TKR patient.  It is just that I cannot imagine any other way they can help me except to remove the scar tissue.  I may be wrong, but I think I have so much damage to my right leg that they will have to open the knee again.  My left leg they may be able to do arthroscopicly.  Only time will tell.  Will keep you posted.

Roma
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on September 13, 2009, 11:55:26 PM
Hi All

Wish me luck tomorrow on my hand and wrist surgery.


Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on September 14, 2009, 08:46:34 PM
I definitely DO wish you the best of luck. I'm glad you reminded me....I can't believe it's already the middle of September. Hopefully things will go exceedingly well and after a short recovery time, it will be one issue behind you.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: skibum9 on September 15, 2009, 02:44:35 AM
Best wishes on your surgery and rehab. Hope everything goes well and you have a speedy recovery.

Sharon
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on September 16, 2009, 07:26:54 AM
Hi All

Thanks for the good luck wishes  ;D  I'm doing OK. The OS did the carpal tunnel surgery and the DeQuervain's surgery. Surgery took 1 hour with general anesthesia. My hand and wrist is all wrapped up with plaster cast inside. My whole hand was totally numb from nerve block, til late last night.  I'll keep it on til appointment on the 24th for stitch removal and a new splint. I have a set of hand exercises to do 3 times everyday. Pain isn't too bad. Fortunately my other hand is the dominate hand.

Dr said it will take time to see if I get full feeling back in my thumb and 2 fingers from the nerve compression.

Got a call from my PCP yesterday. The results of my blood tests last week show that I DO have insulin resistance, so she is placing me on a med called Metformin. It is normally used to treat type 2 diabetes. I will take it everyday at dinner.

Pam

 
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on September 16, 2009, 02:04:06 PM
Pam:

Wow, typing with one hand! Glad to know the surgery is behind you and you aren't in too much pain. Thanks for the update.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Jaci on September 16, 2009, 07:24:47 PM
Hello Pam

Wishing you a smooth, uneventful recovery.

Jaci

Title: Re: Open Debridement and Proximal Z-plasty
Post by: skibum9 on September 17, 2009, 01:02:43 AM
Glad to hear that the surgery went well. I'm impressed that you are tapping out messages with one hand. Best wishes for a speedy recovery.

Sharon
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on September 17, 2009, 03:10:44 AM
Thank you Janet, Jaci and Sharon  ;D ;D

Been icing and elevating my hand. It does hurt and is stiff doing exercises at the beginning, but gets better after doing them.  I looked quite the sight walking with boot cast, cane and bandaged hand. lol

Thanks you guys... and nice to hear from you Jaci  ;D

Pam

Title: Re: Open Debridement and Proximal Z-plasty
Post by: Roma on September 17, 2009, 03:58:51 PM
Dear Pam,
          I have been reading your posts about your hand surgery.  I do hope you have a quick recovery as has already been expressed
before.  Yes, you must be quite a sight.  What some people will do for attention !  My husband and i have been quite a pair lately too.
He tore the tendon in his ankle and has been wearing a boot for the past 3 weeks.  I have always depended on him to do my leg work
for me, but no such thing lately.  He is alot better and hopes to be able to drive to CC for my appt.  It is his right leg you might know.
He has been working very hard this summer and I think if nothing else, he might have a chance to rest in CC. 

         I am busy packing and trying to get ready.  We are actually leaving Wed. of next week so we can break up the trip by making one
stop in Nebraska to see my sister and one in Iowa to see his brother.  I am getting very anxious, but am trying keep everything in tact.
Will keep in touch as my journey continues.

Roma
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on September 23, 2009, 06:53:55 PM
Hi All

Saw my OS for the ankle fusion after 7-8 weeks of using the bone stimulator.  Xrays were taken. Dr says my xrays are not very conclusive and judging by my pain levels , he wants to go 7 more weeks on the bone stimulator. He said he usually tries to use it for 90 days. I go back on Nov 10th for another eval and most likely another CT scan to assess healing. Still in the walking cast.  :(

 I was taken by surprise when the rep for the bone stim came in my room. I had no recollection on who she was. She came in and was asking questions about my ankle and I said, Who are you ! Then she reminded me ,lol. I guess they follow their clients using the bone stim so they can track their progress. She will be at my next appointment.

Sooooooooooooooooooo, 7 more weeks  :P

Tomorrow it is my first postop appt for my hand/wrist and then my PM DR

Pam

p.s.  Next Wed we take daughter back out to CA for school ,  :'( :'( :'( :'( :'(  This time she is going to the LA campus and has a car. If any of you watch Project Runway. They are doing their show from her school, FIDM.
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on September 25, 2009, 06:06:46 AM
Hi All

Today was appt with hand surgeon. Dressing was taken off and stitches from the carpal tunnel surgery in the hand were removed. This was an incision about an inch long. The incision for the DeQuervains surgery is just proximal to the radius. It is about an inch and half. This one has dissolvable stitches and steri strips. My OS said no using my hand/wrist for 4 weeks. No lifting anything more than 6 ozs. He sent me to PT to get a special splint made and he wants me to do gentle ROM ( shown by PT ) 3 times a day because of my arthrofibrosis history without inflaming the tendon. The PT said they usually don't do ROM but they don't want it getting stiff. They made this interesting / funky splint with this plastic the measure then heat up and mold around your forearm to under the hand and around my thumb. They put a special stockinette with thumb sleeve then the molded plastic splint and attached velcro straps. I got to pick out the color of the mold plastic part and pick out color of straps. I went for something flashy with a royal blue splint and hot pink straps. Ha ! I go back in 4 weeks for DR check then in therapy for more indepth pt.

This afternoon was PM doc. Discussed neuroma pain and 2 more new neuromas right by the patella. The new neuromas feel like bee stings compared to the older ones that feel like horrible toothache pain . This explains new burning and pain more anteriorly and rimming the patella and swelling. When they were all located there were 9 , so he injected all  9 with spinal bupivicaine. He will see me back after my trip to Baltimore Oct  28th, to see Dr Dellon, the peripheral nerve surgeon, Dr Noyes wanted me to see

Pam.
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Roma on October 03, 2009, 09:34:18 PM
Hi Pam,
Just a note to bring you up to date on my visit to Dr. Noyes.  Our trip out went very well and I was at his office a little early Tuesday morning.
I am still trying to absorb and analize my time with him.  As usual one of his fellows came in to go over everything with me.  Then he went out to get Dr. Noyes.  When he came in he only took a few minutes and told me that my case was too risky right now for surgery.  He said that my patella on my right knee was totally scarred down and I only had about 85 degree motion.  He also said that there was a small line between
the bone and the prothesis which indicated that it could be coming loose again He said he wanted me to go to water therapy 3 times a week "religiously". He said I needed to lose alot of weight and I asked him how much he thought I should lose and he said 100 lbs. I said, " I would only weight 95 lbs if I did that.  I have always had a hard time  with my weight, but honestly I am not that heavy.  I am large boned and very solid.  He said if I did that he would then tell my doctor iin 6 months exactly how to do the surgery or I could come back to him. He said I  could continue to take prednisone if it didn't make me gain weight which it does.  He never suggested an alternaitive nor did he suggest a protocol for water therapy.
When I left his office I was very disappointed and totally numb. We hardly even discussed the problems I was having in my left leg.  It took me  a day or two to be able think objectively, but I have decided that I will do exactly as he says, and he has not heard the end of me yet. I wnet to him because I know he is the best and he is the one I want to have do the surgery and it was the therapy that I especially wanted to take advantage of because they KNOW how to work with AF patients.  I plan to keep in touch with Donna and we will see, but I can hardly bare the thoughts of 6 more months of agony.  I hope I can hang in there.    Roma
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on October 07, 2009, 02:00:47 PM
Pam:  Sounds like you are still dealing with a lot. At least your hand is improving. But two new neuromas? I'll bet your anxious about your appointment at the end of the month. And keep those bones healing, too!

Roma: How disappointing. You can probably think of questions now that you wish you'd asked. While Dr. Noyes is excellent, I know of a couple of people who have had disappointing appointments with him....kind of feeling like they were brushed off. But you're smart to follow what he says as much as you can. Don't give up!

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on October 08, 2009, 08:16:37 PM
Hi Roma

Sorry it's taken so long to reply. I was in California for a week getting daughter settled in her apartment in LA for school. Her school is in downtown LA. We also had her car shipped out and it arrived 2 days after we got there. We did some sight seeing too  ;D

I'm so sorry your appointment was disappointing. Did you tell him you traveled all the way from Montana to see him ? Did he say why it was too risky to do surgery ?  You might call or email Donna and say you were a bit overwhelmed at the appointment and now you have thought of some questions to ask such as why is it too risky to do surgery now, compared to 6 mos from now, and some clarity. I've noticed while I've been there and from others on the website who went there, that he is big on weight issues. He strongly believes that too much weight is too hard on the knee and too much weight will not give optimal surgery results. Your PT might be able to help with a water program. Exercising in the water takes a lot of weight off the knee.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Roma on October 09, 2009, 09:36:31 PM
Hi Pam,

Dr. Noyes was very aware that I was from Montana.  I figured he was a stickler for weight, but I also think he is a little unrealistic.  However, I have been busy looking up a weight plan I can live with and the sooner I get at it the better.  I also called my doctor to get
a prescription for water therapy.  I did not want to go clear to Billiings to get therapy, (55 miles round trip) but it looks like that is going to
be the best choice for me right now.  There are some water aroebics a little closer, but I decided it would be best to do this through a
therapist and also I have had reports that one of the pools that is the closest to me has had some problems with rashes, etc. and that they have had trouble keeping their chemical balance under control in their pool.  I do not need that right now. 

I got my notes back from Dr. Noyes.  He states that I have an overall Cincinnati Knee Score of only 1 to 2.  My knee ROM on my left knee
was 5 to 110 degrees.  On the right Knee it was 0 to 85 degrees.  The right patella is shown to have decreased lateral and medial translation with patellar excursion.  He said  after weight loss that he could consider open medial/lateral retinacular Z-plasties .  His biggest concern is that with my history that my knee implants will loosen from the bone again.  That is also my concern. 

I guess my biggest disappointment was that he never suggested any alternatives for pain or any protocols for my water therapy.  I don't really feel he knew how much pain I have been in.  The morning I saw him I had not been on my legs much and had been sitting alot on the trip, so I was walking fairly well.  However, since I have been home and back on my feet I am in alot of pain.  I can hardly walk which is why I was on the prednisone.  I just hope the water therapy helps.  I have also checked with my primary doctor about an alternative to prednisone.  I guess I was surprised Dr. N. didn't suggest something for the problem I am having with the ITband on both legs and also the lumps of scar tissue in the back of my knee and around my knee.  Once he saw I had some weight issues it was over. 

I won't give up- not yet anyway.  I was disappointed, but I am a tough cookie and I wish when I left I would have said, "I'LLLL BE Back!".
I still want him to do the surgery because I want to be there for their therapy.  We'll see.

Roma
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on October 10, 2009, 12:55:23 AM
Hi Roma

Yes ! I believe you are one tough cookie !!!  I BELIEVE you will be successful  ;D ;D  ;D ;D  Good for you !

I've had some appointments that were very overwhelming. I was fortunate to have  PT there translate for me and go in the exam room while Noyes was there and give their imput. My Cincinnati rating was the same 1-2.

You might have your PCP get you into a pain management program. That might help you thru the next 6 mos. Can you take oral anti inflams ? There is also a Flector patch ( anti-inflamatory), Lidoderm patches and Voltaren Gel. I use the Lidoderm patches and the Voltaren Gel. The Flector patches my PM doc gave samples but they are very expensive if not covered by ins. The Voltaren Gel I use 2x's day all over the knee. I wear the Lidoderm patch one the knee 12 hours.

Your IT band might have scar tissue around it. I had IT band incased in scar tissue and he had to debride it and do a Z plasty to lengthen it because of the scar tissue. If it is a tight IT band , have you tried IT band stretches ?

Good Luck on your water program

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Roma on October 10, 2009, 03:08:55 AM
Pam,
Yes, I do have scar tissue attached to my IT band.  I have it in both legs which is affecting my hips so much. My PT worked on my IT band and gave me stretching exercises which I did faithfully and still do except the scar tissue is pinching so bad in my right leg it hurts to do some of them.  I think the most painful PT I ever had was on my IT band.  I shed many a tear over that.  That is why I was so suprised that Dr. N.  did not put a shot or something into my leg to relieve that somewhat.  My daughter sometimes will massage my leg and hip for me.  When I  rub a spot in my hip I can feel it pulling way down under my knee just like a shoe string is attached.  I went to therapy for months and then finally my insurance shut me off. 

I called my PCP and he put me on tramadol.  I don't know if I am going to be able to take it because I have been so nauseated all day.  I do take an anti-inflamatory, but it really doesn't do much for the pain I have when I walk.  It is like the scar tissue is pinching in the knee.

I requested some time ago to have Lipoderm patches, but my insurance said no.  They were like $100.00 a piece.  I use bio-freeze, but have not heard of  Volataren Gel.  Is that a prescription or over the counter?  I am willing to try anything.

Roma
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on October 10, 2009, 04:35:51 AM
Hi Roma

The Voltaren Gel is a prescription. It comes in tube form and has paper strips used to measure the dosage when the gel is squeezed out. Then you rub it in. I'm surprised the Lidoderm patches weren't covered by ins . It's a pretty common drug used in pain management.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on October 22, 2009, 09:47:46 PM
Pam:

I can't remember the exact date of your appointment with the "neuroma doctor," but I think it's coming up soon, right? When you do go?

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on October 23, 2009, 03:37:26 AM
Hi Janet

I leave next Tuesday the 27th to fly out to Baltimore to see Dr Dellon. My appointment is Wed. One of the things he is going to do is a series of nerve blocks to map out the nerves involved. I would go back another time for surgery. We will go back home on Thursday. I am staying at a Sheridan Hotel very close to the office with a discounted rate and it has a skywalk to a Mall , hahaha.  My DH is able to go to a business meeting while we are there. Thank goodness for my DH frequent flyer miles.

Thanks for asking  ;D ;D ;D

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Teresa_S on October 27, 2009, 07:46:22 AM
Pam, good luck on your trip, hope this is the answer for you. IM me and let me know how it goes when you have time. thinking of you, and wishing you the best. Four weeks to new grand daughter. How is yours? Teresa
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on October 29, 2009, 03:25:37 AM
Hi All

Today was my appointment with Dr Dellon at the Dellon Institue of Peripheral Nerve Surgery, in Baltimore or rather Towson Md. All I can say is WOW! I was really impressed with his knowledge, easy explaination,and amount of time spent with me. I was there 5 hours , the first hour spent waiting, paperwork, ( reading his textbooks) and the next 4 hours undergoing time with Dr concerning history and exam, series of nerve blocks, anatomy of nerves in the knee and treatment plan. I had all sorts of ink marks on my knee and leg , plus he took pictures.  I found out I also have peroneal nerve damage on the lateral side from my TKR dislocation in 2006 and shattered proximal fibula 2000 and deep peroneal nerve and sinus tarsi nerve from my broken ankle and surgery in 2000, besides all the medial knee pain. I've had pain in those areas for a long time and he knew just where to hit the nerve. He did several nerve blocks. He says I am one of the worst cases he's seen and he will need to do 6 procedures that involve each, their own incision. I will have some major nerve work done to the saphenous nerve at the adductor canal and 3 incisions with nerve resection on the medial side of the patella and down near the mcl. On the lateral side he will be going in near the fibular head to the peroneal nerve to decompress that nerve and halfway down from there will be at the deep peroneal nerve and further down to the sinus tarsi. He won't know til he sees the area whether it will be a resection or a decompression.  This is an outpatient procedure, so I will go back to the hotel afterwards. I asked about potential for redevelopement with scar tissue. He says there are no guarentees but did say with plastic surgery techniques, they are very precise and done in a way as to not inflict collateral tissue damage unlike orthopaedic surgery so recovery takes less time . I will be able to walk around soon after. He was very eager to teach about the nerves and use visuals to show me. There were other patients there from other countries and states. He feels very confidant he can help me become nerve pain free and to get off PM meds. These are sensory nerves and will not affect ROM. I will not lose the ability to feel if I developed a mechanical problem . I was concerned since I have scar tissue anteromedial to the patella that we are watching.

The earliest I can be scheduled is Nov 12th and that's if a patient from Dubi, can't make it. Otherwise I can do it on one of the first 3 Thursdays in Dec. The surgery is all micro surgery and will take about 3 hours .  He will call me at the hotel that night and will stop by the hotel  the next morining to see me, before he gets to the office. I will go back at 3mos post op for a checkThere's really no rehab other than they want me to do pool walking everyday working up to one hour to help my brain adjust to the denervation.

It was a lot to take in today. I'll probably remember other bits of info and additional questions to email the Dr. Tomorrrow we fly back home

It's been a looooooooong day

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Roma on October 29, 2009, 04:00:27 PM
Dear Pam,

I am so glad your appointment went so well.  I truly hope you are on your way to a somewhat pain free life after all this time.  I am impressed with how much time he spent with you.  That is still my biggest disappointment about my trip to CC.  I feel he could have
examined me better and given me more suggestions as what to do about my ITband, etc.  I am doing water therapy, but my therapist
will decide tomorrow if I can continue to tolerate it.  My legs just stiffen up so bad after I am in the water I am in agony.  I am back on Hydrocodone right now because I could not take the tramadol.  I did get some Volteran gel yesterday and I am hoping that will help me some.  I have had this place about the size of the palm of your hand just below the knee on the outside of my leg that is just driving me
crazy.  It is like there is scar tissue attached to a nerve or something and it shoots clear up into my hip.  My therapist said it is caused
from the IT band.  He worked on the IT band on my left leg.  He said my leg from my hip to my knee is just full of lumps, which I
already knew.  He told me that in his nearly 20 years of practice he had never had a knee patient with so many problems.  He admits that
he is at a loss as to how to help me because we have already tried so many things. Isn't it just great to be so special as we all are? The problem is that no one really knows that much about scar tissue here, nor do they want to take the time to figure it out.  They never see a case like mine.  Myy therapists have done more for me than any one and truly would like to help me.  My primary care doctor had never heard of Volteran Gel, but when I told him that I had looked it up on the Mayo Clinic drug list that it said it was a form of diclofenac.  He wrote me a prescription for it, but I had to tell him how to spell it.  It is not that he is not a good doctor, they just don't deal with these things.  It is most frustrating because I feel like no one wants to be bothered with a case like mine.  I wouldn't know how to act if I went to a doctor and he actually spent some time with me going over ALL of my concerns about my legs.  I was reading Dr. Noyes notes again and I noticed he wrote that I had a Liinclau ratio of 0.91 on my left knee and on the right evidence of patella infera with a Linclau ratio of 0.68 .  I thought if you let patella infera get too bad it can do alot of damage.  Well here I am going on about myself again when you have been through so much, but I needed to unload again today.  OH! I forgot to say that my right arm is really botheriing me too. I suppose just years of helping myself up and down. 

Now on a positive note........I have lost 7 lbs. so far on weightwatchers.  Not too bad for just 3 weeks.  I have been very faithful about
keeping track of points.  Meanwhile I just keep on keeping on. 

Roma

Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on October 30, 2009, 02:20:50 PM
Pam:

Finally!! How wonderful it is that you've found a doctor who can help your nerve pain. It sounds like there's a real plan and REAL HOPE! It's great, too, that the surgical techniques shouldn't set off the scarring process again. You must be overwhelmed but ecstatic about the possibility of being free from this pain!

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on October 31, 2009, 02:15:21 AM
Hi Janet and Roma

After a very bumpy/rough flight, we finally made it home. That was the most turbulance I've been thru :o

Roma,
I'm glad you got a script for the Voltaren gel. I used it 3 times a day. I also used it in other areas too ;)  I wish your visit to CSM went better. If you see no improvement or become worse, don't hesitiate to call or make another appointment. I had scar tissue wrapped all around my IT band which made it tight. I had to have it all debrided and the IT band lengthened. You might have nerves compressed there too. Feel free to vent anytime on here.

Janet, Yes I am very hopeful...a feeling I have not had in a long time. I had a message on the answering machine waiting for me when we got home yesterday from Baltimore. My surgery will definitely be on Nov 12th....YIKES ! only 2 weeks from now. I had to scramble today to make an appointment with my PCP and my cardiologist, as per the anesthesiologist, to obtain preop physical and labwork and to get a cardiac clearance. My surgery will be at 12:30.  I have appointments with ankle OS and PM before I go too. I will find out if I need to have the fusion redone. If so, Dr Dellon said to wait 6 weeks after his surgery. I will be so glad to get off all the meds.....fingers crossed

Teresa
Thanks for the good luck wishes. My son and DIL had their sonogram today. They are having a girl !!! Her name will be Molly so very Irish name she will have. My DIL is due at the end of January. That will give them 3 girls and 3 boys.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Roma on November 07, 2009, 07:01:16 PM
Hi Pam,
I know your surgery is coming up in just a few days.  Boy how time flys when we are having fun right?  I want to thank you for suggesting
the Volteran gel.  I do believe it has helped with some of the pain.  It seems like it has especially helped the place in my hip where the IT
band is pulling over the bursa and aggravating it so.  I am goiing to water therapy yet.  It is a struggle to say the least, but I am trying to give it a fair chance.  It won't really help the scar tissue, but it will help build up strength in my legs.  My therapist thinks I should see a deep
massage therapist after this week, because he has basically done everything he can for me.  It does seem to help me if they can get the IT bands loosened up.  I have to wait and see who he suggests.  He has been working on the IT bands, but he feels a real Massage therapist
could help me more.  We will seeeeeeeee!

Hope all goes well with you and I certainly hope this helps you a great deal.  Could it be that you finally will begin to get your life back.
I certainly hope so.


Roma
Title: Re: Open Debridement and Proximal Z-plasty
Post by: skibum9 on November 08, 2009, 02:03:09 AM
Hey Pam

Just wanted to pop in and wish you the best of luck on your upcoming surgery. I sure hope this provides some much needed relief.

Things are status quo here with no real change in the knee. Work has just been crazy lately and just don't feel up go getting on the computer when I get home.

How long will you be spending in MD after the surgery?

Sharon
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on November 11, 2009, 01:07:00 AM
Pam:

Only two more days! I'm sending the BIGGEST best wishes for your surgery. You've been through too much, so here's hoping this is the answer for those pesky nerves.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on November 11, 2009, 01:14:56 AM
Hi All

Thanks Roma and Sharon for the best wishes on surgery. I am glad you find the Voltaren Gel helping Roma and I hope you can find a good massage therapist to work on your IT band. It sounds like that has helped you out too.

Sharon, you might keep Dr Dellon in mind if you have continued nerve problems.

I have been so busy going to Dr's offices and if I don't come down with some sort of illness because of all the exposure to germs , it will be a miracle. I started physical therapy on my hand and mainly my thumb. OUCH! It is amazing how much it hurts to do therapy. I am trying to stretch out tight tissues and gain ROM. I had measurements taken just like in a knee, only these are done on a computer. They do the good hand and the bad hand and compare. My hand gets warmed up in a machine that blows hot air and fine sand. I call it the sandstorm machine. You do various ROM exercises in it and also squeeze the sand. I pull silly putty apart looking for metal washers. Just like the knee has diff colors for degrees of difficulty like the therabands, I also do some fine motor movements . It's kind of fun but hurts.

I also had to go to hospital lab for tests, my cardiologist and to get an EKG, primary care doc plus a chest xray, pain management doc and today was the ankle doc. I had to get another CT scan of my ankle to determine if the fusion is still non union or if there has been bone growth. The bone stim rep was there too, discussing my ST fusion. That will determine if the fusion needs to be redone.

Tomorrow I fly out to Baltimore and have surgery Thursday. I'll post when I feel up to it. I'm excited to maybe be nerve pain free.  ;D

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on November 11, 2009, 01:20:39 AM
Hey Janet !!

We posted at the same time...haha... thanks for wishing me well for my surgery. It will be quite involved. I got Dr's notes on exactly what he is going to do and it is pretty extensive work, not just on the knee , but on the outside of my leg on down to my ankle. He is going to try and save the nerve where I broke my ankle . I have confidence in this doctor's skill.

Thanks !!  ;D ;D

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on November 12, 2009, 10:37:04 PM
Hi All

I am back at the hotel. It was a very interesting day to say the least. I will post more later. I'm tired for now.

Pam ;D
Title: Re: Open Debridement and Proximal Z-plasty
Post by: skibum9 on November 13, 2009, 02:37:54 AM
I hope that was interesting in a good way. I look forward to hearing all about this.

By the way little Sierra has grown like a weed and is almost to official cat status. She still needs a couple of pounds before she will be able to take down her big brother.

Sending you wishes for a speedy recovery.

Sharon
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on November 16, 2009, 01:03:36 AM
Pam:

Take your time! But I am really interested in how it went. Post when you can.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on November 16, 2009, 05:56:51 AM
Hi All

Well we made it home last night about 9pm. My poor DH is starting to get sick with upper resp symptoms. I hope he doesn't get the flu. Today we both slept late and again in the afternoon.

We stayed at the Doubletree Inn at the Colonade and got a hospital discount of $99/nite. The hotel was very nice. The next morning was surgery at Union Memorial Hospital. This hospital was about 3 blocks from the hotel right next to John's Hopkins. This was a very clean hospital and I will have to say the most friendly hospital I have been in. Everyone from the housekeeping, security, nurses ,techs and all people greeted you with good morning , how are you and so forth.The care was that way the whole time. The pre-op routine there is a bit different then what I am used to, I got into gown and had IV started then I was walked upstairs to surgery to wait in their wait area. Dr Dellon and partner Dr Hashimi ( probably wrong spelling but sounded like this ) walk in and meet my husband. Dr Dellon is very personable. He has us go back to another room where he asks me what he is planning on doing. I guess to make sure I knew what was going to be done. He discusses the surgery with Dr H and myself ,they are looking over my leg and have me point to some of the areas.He shows me where I will expect to feel permanently numb. Permanent numbness will be a welcome sensation after all this pain. Dr Dellon is still going over things with Dr H and the anesthesiologist and then he asks if I ever heard of Dr Oz. I said I've never watched him but know he was on Oprah.He said he has been contacted by them on his work with nerve/peripheral nerve surgery  He says my story is one that would be really helpful to others because of the amount of pain I have been in,length of time, number of surgeries, amount of medications I was taking, monthly cost of those meds and methods tried to manage pain . He asked if he could film me as he asks a few questions and send it to Dr Oz to see if they would be interested in my story. I thought sure,if I can help somebody not go thru all this ,go ahead. So he asked me some questions including how this has affected my life, the amount of medications I take, the expense , yrs of pain and nerve pain, etc, etc. Then I went on to be prepped for surgery and taken to OR. I could feel him drawing on my leg where he planned on doing his incisions. I'm always amazed on how many people are involved in the OR, when I look around,,then it's off to sleep.

My surgery lasted 3 hours. Dr Dellon said surgery involved 8 very complex procedures thru 4 incisions. He said each incision was a single surgical procedure done all by it's own , so to do all 4 of these procedures in one session was really unheard of. Two of the places involved having to cut into muscle. One of those was the surgery on the saphenous nerve thru the adductor canal. this is a about a 4 inch incision going from  about mid medial knee up to the thigh. He said he could see all the areas where Dr N had worked on the nerve. He said the nerve was very scarred down onto muscle, tissue, ect. No wonder this hurts now since it involves muscle work. He had another incision on the medial patella to the medial patella nerve and said he had to go into the joint , I was so scarred down there, He resected the saphenous nerve and buried the ends in the muscle. I am numb from the patella to the whole medial side of my knee and from the middle of the tibia over medially halfway down.

The next incision is on the lateral side where the fibular head is located. This incision is about 3 inches and was for work on the common peroneal nerve. It was for debidement and decompression. Once again Dr D said it was so scarred down then he went on to the deep peroneal nerve and sinus tarsi. This was done thru the incision on my lateral ankle where it had been previously broken and surgically rebroken back in 2000 and 2001 and more work to trim bone last January. He said that area was very bad and took a lot of time. My deep peroneal nerve was kinked under bone, He cut between muscle and had go between the tibia and fibula. He said he visualized the 2 fracture sites where nerve was adhiesed to bone and muscle. He was just really amazed at the scarring but he was so happy he was able to save the deep peroneal nerve and not have to resect it. He also resected the sinus tarsi to help with the anterolateral ankle pain I have and will continue to have regardless of a nonunion or not of the ST joint fusion. My leg is bandaged from thigh to ankle. He said I would be able to walk afterwards and just use my cane. We went back to the hotel about 4:30. I'll keep the dressing on til the 19th after that I can remove them and start using betadine 3 times day to the incisions. I'll get the stitches out in 2 weeks at PCP office. I kept my leg elevated and ice paks to the thigh and ankle where the muscle was cut. That evening Dr Dellon called me to see how I was doing and said he would be stopping by at 9am to check on me.

At 9am Dr D came to my hotel room to see how I was doing. He had me touch several areas on my leg/foot and told me which ones were numb from anesthetic injected in and from resected nerve. I did not have any nerve pain ! He went over my surgery again and answered some questions I had. He went over my return visit at the end of January and we discussed another surgery to possibly be done at that time. This would be to the tarsal tunnel, to work on the lateral plantar nerve. I lost the use of that nerve when I had the plantar fascia ruptured and lost the tibial tendon function which is why the ST fusion was done. I have no movement to all my toes except the big toe of my foot and they kind of just flop when I walk. He was very happy with this surgery and so am I. I have not had any nerve pain since...no burning,needle sticks,zingers,throbbing aching...nothing. I should be able to get copies of surgery and Dr's report soon , so I'll be able to describe more accurately, what was done.

I am so excited to have no nerve pain !!.....I am almost afraid to be excited and happy. I have surgical pain from all these incisions and muscle involvement, but no nerve pain  ;D Let's hope no scarring up.  Dr Dellon has been great, very nice, loves to explain all aspects of surgery and really cares to make you painfree. I highly recommend him for nerve issues.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on November 17, 2009, 01:17:51 AM
Pam:

What an ordeal...but what a result ;D!!!! I'm so happy for you! It must be heaven to "just" have surgical pain and no nerve pain. I have been praying that you would find an answer, and it seems it came in the form of Dr. Dellon. Congratulations! I hope you continue to have a good, full, complication-free recovery.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: skibum9 on November 17, 2009, 01:35:43 AM
Pam

It sounds like a relief that this part is over with and that you all have made it home. I'm glad to hear that you have had a few days of relief from the nerve pain and I hope that that continues once the surgical pain is gone. I hope you have a speedy recovery and no complications.

Sharon
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Roma on November 17, 2009, 04:02:01 AM
Dear Pam,

Yes, you did have an ordeal.  I am so glad that things are truly looking up for you.  Maybe you will get to be on Dr. Oz's program.
Wouldn't that be something!  It will be so wonderful if you can finally be pain free.  No one deserves it more after all you have
been through.  May you have a very quick recovery.

Roma
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on December 01, 2009, 03:10:46 AM
Hi All

I am now 18 days post-op. I am dealing with some nerve issues... STILL. I will elaborate more when I see pain management and receive reply to an email update to the Dr. I'm not trying to be melodramatic, just want some answers first.

Today I got a copy of my op report. He did:

Neurolysis of the sciatic nerve, common and peroneal nerve at the knee, denervation of the proximal tibiofibular joint, neurolysis of the superficial peroneal nerve, fasciotomy of the anterolateral compartments of the leg ( for compartment syndrome of the left anterior and lateral compartments), resection of the deep peroneal nerve, resection of the saphenous nerve in the thigh and implantation of the nerve into the adductor muscle group, resection of the medial cutaneous nerve of the thigh and implantation if the nerve into the vastus medialis, resection neuroma of the medial retinacular nerve and implantation of the nerve into the vastus medialis and denervating the sinus tarsi.

The procedures took up 3 pages of the report.

Today all my stitches were removed by PCP. The incision to the thigh is pretty red but PCP feels it is from suture reaction. My knee is getting pretty stiff and is pretty swollen. I've been elevating and taking my celebrex. PCP wants me to increase my neurontin for a month.

Tomorrow is PM doc so I'll see what he says about some things when I see him.

Thursday I see my ankle OS to go over my CT scan results of my ST fusion. Those results showed the ankle still not fully healed after 10mos.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: lenorem9 on December 01, 2009, 11:02:40 AM
Hi Pam,

I've been following your progress but not commenting much.  Wow!  3 pages of procedures!  I was hoping this nerve work would finally get rid of your pain once and for all.  After all you've been through I don't think anyone here would call you melodramatic for anything.  Hopefully you'll get some answers and relief soon. 

Lenore
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on December 02, 2009, 01:08:58 AM
Pam:

I've been watching for another post from you. I'm sorry to hear it's not all good news. Just hoping and praying that all your issues resolve soon!

Janett
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on December 02, 2009, 02:19:31 AM
Hi Lenore and Janet

Thanks for your replies. Lenore, I see you had a surgery in November. How did that go? Was it with Dr N or hometown doc?

I haven't had a response yet from Dr D....I probably won't get one til tomorrow or Thursday. Today I saw my PM doc. He seemed a little baffled by this since the saphenous nerve was resected up in my thigh. He feels it is probably phantom pain or something more serious called Anesthesia Dolorosa, which is severe pain in an area that is numb/anesthesia. He wants to increase the Neurontin and depending on what my pain relief is, I could get up to taking 3600mg/day. If I still have pain, then he will add another anticonvulsant. I hope he is wrong.

I had this pain starting at day 2-3 post-op. On day 8, I emailed the doc . He said I was only 8 days out of surgery and collateral sprouting of the nerves was to be expected. He wanted another update in a week. I don't call this collateral sprouting when my whole lower leg is involved.

This pain is like having acid burning your skin and having a TENS unit turned all the way up with occasional stabs with an ice pick....nonstop

I can't wait to get a reply from the doc. I need to have some hope on this, for my sanity.

Here I thought when I was going to have my PM appt after surgery, I would be discussing weaning off my meds......NOT INCREASING THEM !!!!

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on December 04, 2009, 02:31:34 AM
Hi All

Well, still no reply to my email from Dr D, but today was surgery day,so maybe tomorrow I'll get a response. If I don't, I will call. In the meantime, nerve pain marches on. I am now taking 600mg of Neurontin 3 times a day. I find it more difficult to stay awake in the mornings.

Today was my appointment with my ankle OS. The verdict came as no surprise.....my fusion needs to be redone. He will place a new bone graft to the subtalor joint and place new screws. I find out tomorrow when my surgery will be scheduled and hospitalization will be dependent on where he takes the bone graft from....my hip or my heel. If it is the hip, that will require a longer stay in the hospital because of the pain. We gave it a good shot but after 10-11 months since surgery,it's time to get a fresh start, so to speak.

On interesting thing from my visit today concerned my nerve pain. My OS suggested I try Neurontin cream. I didn't even know there was such a thing. It is made at a compounding pharmacy and contains neurontin, amyltriptaline, and lidocaine. I am to use it in addition to the oral Neurontin. I pick it up tomorrow.

I hope this will bring some relief from this pain.

Pam


Title: Re: Open Debridement and Proximal Z-plasty
Post by: skibum9 on December 08, 2009, 02:11:35 AM
Hi Pam

Just wanted to check in and see how you were doing. Any relief yet from the nerve pain? I can only imagine the acid burning feeling. How is the neurontin creme working? That sounds interesting. Is there different strengths that can be made up.

I have lots of questions about your surgery especially the proximal tibiofibular joint. I think that is where I get the infamous pinch. These can wait until you feel up to it and I get my computer back up and running. Which at this rate will take a few weeks to fit into my schedule.

Not sure how to describe my knee any more other than a hunk of junk. Someone made a broken knee joke to somebody at work today and I uncharacteristicly jumped on them about it. May have to do some explaining tomorrow.

Did you hear from Dr. D yet? Sure hope you got some answers to your questions.

Take care and keep us posted when you feel up to it.

Sharon
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on December 10, 2009, 04:18:02 AM
Hi Sharon

How have you been......haven't heard much from you.  ???

The compounded nerve pain ointment has  helped somewhat. I have to apply it 4 times day. I don't particularly like it as an ointment because it never rubs in. It does come in strengths and can have other ingredients such as ketamine. It is hard to rub it in because my leg is so hypersensitive. This pain is like having a constant hornet's nest in the leg...esp in the ankle.

I finally got a response from Dr D. He said I could have another branch of the saphenous nerve down there that needs resecting or could be collateral sprouting of nearby nerves into the denervated area. 5% of people need to have additional surgery to nerves that didn't show up the first time. He will evaluate it when I see him at the end of January. He also wants me to do pool walking 3x's week to help desensitize my leg. I don't think that will help me with this nerve pain. Wouldn't life be simple if we lived in the same city as these specialists, so we could see them when we have problems. I still have faith in Dr D so I'll have to bare with this nerve pain, but sometimes I hate my leg and just want to cut it off. My luck would be that I would probably develope a lot of stump neuromas .  :P

And speaking of cutting..........I have a surgery date to have my ST fusion redone. It will be January 22nd, just one day shy of the 1 yr anniversary of having it done last January. Happy Anniversary  :(

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on December 11, 2009, 12:09:05 AM
Hi All

Today brings just another little update. I emailed Dr D about my surgery date for my fusion revision , so he will see me 6 weeks after my fusion to evaluate this leg pain. In the meantime, I'm not going to go thru all the trouble of getting a membership for a pool. I am just going to let the jacuzzi jets on my bathtub bubble around my leg, that should help desensatize my leg , if at all.

Hand surgeon post-op appointment today, got cortisone shot to the carpometacarpal joint ( that's the base of the thumb  ;) ) to help with some residual pain and help with rehab.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: skibum9 on December 11, 2009, 02:58:02 AM
Hey Pam

I have been doing okay. No great improvement in the knee, but just too darn busy with work to complain about it much any more. Also pretty much done discussing it with folks. It is what it is and time to move on with life, as limited as it may be.

I seem to get through the work day pretty well now. I think I have found the right balance of walking, standing, and sitting to make it through with out being in a lot of pain in the evening. However, I did figure out my walking limitations pretty darn quickly while in Vegas over Thanksgiving. We tried to keep the walking to a minimum, but after day 2 the leg was in agony from the hip to the foot. Sitting at the ball games or shows where the leg stays bent for a while causes a lot of the nerve pain in the foot, which takes a few days to resolve. So doing this back to back several nights in a row did not help things. Live and learn I guess. Airport security is fun now too.

I completely understand the cut off the leg comment. There have been numerous times that I have had the same thought, but with my luck I would end up with the phantom nerve pain. Still looking for someone to operate that chain saw. Just kidding.

I have stumped another doctor. I told her at my first appointment that I don't fit in the box that 95% of patients fit into. Diagnosed with sleep apnea back in September, been attempting to treat that with a CPAP machine. According to the doc, the CPAP works just fine, but I still don't sleep and feel exhausted all the time. More so lately, learning how to sleep with the machine and changing up the sleep meds. After 3 months of the torture, we both agree that the insomnia and sleep apnea are not related. The choice is meds and CPAP or neither. This is going to be a tough one. I hate the CPAP, but need the sleep.

I saw a rheumatology doctor  back in October as recommend by Dr. N to see if they would have any ideas on treating the pain, since I refuse to go back to pain management. You know the visit is not going to go well when the conversations starts out with "You have arthro what??". The final conclusion what that I have no auto-immune issues and that maybe some NSAID would help. Come back as needed.

So for now, I have given up on the medical community to attempt to figure out how various symptoms may be interrelated. No one really seems to want to take the time, sit down and think. I still need to find Dr. House.

Little Sierra is now big Sierra. She has gone from cute, little, frisky kitten to and adorable fun loving almost cat. She has the perfect temperament and personality. Just the right cat to put a little perk in fat boy's little world. Good thing since it took me 6 trips to the shelter to find "the one".

Going to visit Mom for Christmas. No warm beach this year. Since no one knew what would be going on with the knee, we never got around to making real plans.

Got to go. Hope the family is doing well and that you start getting a some relief from the nerve pain a little bit at a time.

Sharon
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Roma on December 11, 2009, 03:51:08 AM
Hi Pam,
      Just a note to let you know that I do keep up with your progress--if you can call it that.  The only positive side of your situation is that you do not have AF and Nerve problems in both of your legs as I understand.  However, I realize that all of your other problems
make up for it.  How could any of us ever have known that our lives would be so controlled by this horrible condition? 

I am continuing to struggle on.  I am doing water therapy, but just have not been able to make it 3 times a week.  It has been bitter cold here.  I went yeterday and it was 14 below zero with a terrible wind.  I thought "I must be crazy."  Sometimes I think maybe
the water therapy is helping some.  It certainly is a less painful way to do exercise.  I am not working with a therapist right now but
am going on my own.  I do try to make it twice a week.  Walking is still my big problem.  I have had a couple of busy weeks with a
couples of batches of company, and I can sure feel the aftermath of it.  I am like Sharon.  I just don't know where to turn at this
point for help, and I am very tired of talking about it andpeople asking me if I am getting better because most people just don't understand.  They just don't realize that water therapy is NOT going to make the scar tissue go away. I am keeping at the weight loss program and have lost 15 lbs so far.  People are beginning to notice that I am losing weight.  I sometimes wonder if these doctors realize that not everyone has a pool nor does everyone live even close to a place that has one.  It takes up so much of my day when I have to drive in and do the therapy, get dried, dressed and get back.  I have to work in between all the classes that go on because I cannot do the water aroebics.

On a brighter note, I made myself get out my Christmas decorations and do some decorating.  My daughter and 2 friends came and helped me.  The last two years I have not been able to do anything, but just decided I needed something to lift my spirits a little.  It does look very nice and my dear hubby even got into the decorating this year.  We even put a little prelit tree in our bedroom so we
can lay in bed and enjoy it.  Romantic huh?  Well one has to do something.

Well I will continue to keep up on your progress.  I do hope the nerve thing gets better.  It is so hard to have hope and then have
disappointment again.

Roma

 
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on December 18, 2009, 09:09:20 PM
Pam:

Too bad your fusion surgery will push your appointment with Dr. D even further. Actually...too bad about the whole situation! What a disappointment. I don't know how you keep pushing through.

Just when I started feeling pretty good, I've developed plantar fasciitis on my TKR side.Yuk! I had the foot mapping done and showed my arch has fallen on that foot. So I'm doing everything I can to keep it in check, but I suppose the arch won't correct itself and maybe this will be a long-term problem?? I want to avoid seeing a podiatrist if possible, because last time I went (with heel bursitis), everything he did made something else hurt. Frustrating!

Hope everyone can put their pain aside for a week and have a good Christmas.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on December 23, 2009, 03:41:52 AM
Hi All

First I want to wish everyone a Merry Christmas and Happy Holidays to all of you. Looks like my neck of the woods will be getting snow on Christmas. I finally finished decorating the house, finished shopping and will have Christmas eve turkey for the whole family....slowly but surely.

Janet, I'm sorry to hear about your plantar fasciitis. That is a very painful condition. I ruptured mine which led to the posterior tibial tendon insufficiency and then ST fusion. Hopefully rest and some custom orthotics will help you. Too bad it happened during Christmas time.

Not a whole lot has changed with the new nerve pain. The ointment helps some. I put it on 4 times a day. It still feels like a hornets nest esp in the ankle. I'm still in PT for the hand and after today's appt with shoulder guy, I'm now doing shoulder PT. The MRI I had taken last week showed many tears in my Rotator Cuff and bone spurs all around the humerus and 2 large bone spurs on the acromion. It has been extremely painful. I got a cortisone shot in the shoulder today. This OS knows I am having the ST fusion redone which means more crutch time. He will do surgery when I am healed enough to not need crutches.


Happy Holidays  ;D ;D ;D

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on December 23, 2009, 08:24:41 PM
Pam:

Merry Christmas to you, too. I'm just about ready....even at work. I work at a large church and we will have over 3000 people here at six services on Christmas Eve. Then we don't have another work day before our regular Sunday services. Surprisingly, everything is already done and ready to go! I'm not quite sure how that happened :P. It helps when Christmas Eve is at the end of the week.

My stepfather and mom are in a real health crisis. Hank is 90, has dementia, suffered another small heart attack, and is in the hospital. He'll go to rehab, but probably won't ever come home. My mom was dizzy this morning and ended up in emergency, although all the tests were fine and she is now home. They live a few hours from me. Luckily, my brother is there (from New Orleans), and my sister arrives (from west Michigan) this afternoon, so she is not alone. We'll go on Christmas, but have to come back that night because our daughter has to work the next day. Needless to say, all of this is very stressful.

Here's hoping 2010 is better than 2009 and everyone gets pain-free knees for the new year!

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on December 23, 2009, 11:51:26 PM
Hi Janet

I'm so sorry to hear about your Stepdad and Mom. It is very stressful dealing with ailing parents, esp when you know they need to go to a nursing home. It is not an easy decision to make. I spent 2 years dealing with serious illnesses and many hospitalizations and nursing home admission. It must be very hard on your mother to make these decisions too. Your brother and sister came at the right time, so your Mom is surrounded by family. I hope things improve for them.

I agree, I hope 2010 brings better knee days and health because 2009 was the pits.

Merry Christmas  ;D ;D ;D

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Roma on December 25, 2009, 07:18:10 PM
Dear Pam and Janet,

Yes, we are all hoping 2010 holds something better for us.  I am tryig to be positive about the New Year, and truly hope I am not facing more complications with these legs.  If I can just keep the pain down, I can cope to some extent.  I read all that you are
doing for Christmas Pam and I wonder how.  I guess we just do what we have to do!  I wanted to make this Christmas special, so
I did alot of decorating, and had alot of company  since the first of December.  I just spent a couple of days making up food and
putting it in the freezer so on the day I had company, all I had to do was pull it out and put it in the oven.  I love to open my
home, but it is very difficult when your legs don't want to cooperate.  It has been a pretty good Christmas though and I am glad
I put forth the effort for my hubby's sake even though it was hard. 

Roma
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on December 28, 2009, 01:22:25 AM
Well, I hope everyone had a good holiday! Ours was crazy busy, and a very long day, but I realized as I went to bed that night that I had gone through the whole day and my knee never hurt. That's the first time in ten years. So I think I am finally healed. It's quite amazing. I never thought I'd get to this point.

Here's wishing you all the same in 2010!

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: skibum9 on December 30, 2009, 12:50:24 AM
Janet, I'm so glad to hear that you made it through a day and didn't notice your knee. I just hope that I don't have to wait another 7 years to get to that point. However, half way through making a batch of cookies over the holidays, my knee started screaming for mercy. But the cookies won out over the knee.

Pam, I hope the nerve pain settled down so that you could enjoy the holidays.

Hope everyone's knees improve in 2010.

Sharon
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Decruz on December 31, 2009, 01:57:14 AM
Hi,
just a question for Pam: I've read a great part of your story but I didn't get what kinf of Z-plasty you underwent (proximal what does it means exactly?) - if I missed a post in which you explained it, I'm sorry, hope it doesn't bother u..
Thank you
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on December 31, 2009, 08:19:57 PM
Hi Decruz

First, I want to wish you a Happy New Year. I hope 2010 is better than 2009 was , for you.  ;D

I've had 3 Z-plasties done during my surgical history. The first one was done by a local knee specialist who had diagnosed the IPCS and patella infera .A z-plasty allows a gradual, controlled release of tight tissues. Plastic surgeons use it a lot for scar revisions and OSs use it for tight contracted tissues and scarring. I had a lateral Z-plasty done for patella decompression during the surgery I had for IPCS and infera. I had a delee ostoeotmy done after the OS performed an extensive LOA, AIR. . My patella tendon was totally scarred down to my tibia.

The second Z-plasty was done by DR N.  I had to have an open surgery to remove scar tissue all over my ligaments. My MCL was incased in it, my posterolateral complex , LCL, and my IT band was scarred down. He also decompressed a neuroma near the MCL and removed a fabella bone embedded in the gastrocnemious tendon and impinging in my TKR. He did a z-plasty lengthening procedure because the IT band was scarred down.

The proximal z-plasty by Dr N was done on another open surgery for AF. I had a LOA, AIR, synovectomy and the proximal z-plasty. I had it because my patella lacked mobility. He debrided and cut the tight medial and lateral retinaculum and contracted tissues proximally in a z fashion, pulled the layers apart and stitched them down. He told me this procedure was a rare one to do.

I hope this helps you out

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on January 14, 2010, 02:31:27 AM
Hi All

Hard to believe it's almost time for my revision subtalar fusion on Jan 22...a week from this Friday. I haven't even taken down the Christmas decorations.  :o  I contacted Dr Dellon's office about my return appointment. He wanted to see me 6 weeks after this surgery. Looks like I will be going back to Baltimore for a March 3rd appointment, then I will be scheduled for surgery on the 4th for more work to the saphenous nerve. Not sure how many procedures until I have my appointment. I will be so glad to have this done and hope this will be THE END of nerve problems.

My PCP wanted me to cut down my cymbalta by 30 mg. I started this cut back a week ago last Sunday. All last week was horrible, I could not function and had to be driven to my PT appointments. I was very unsteady and felt like fainting. I thought I was going to loose it a couple times. I finally said forget this and started the 30mg back up. I came across some website where they discussed how hard it is to wean off cymbalta

I am trying to be optimistic with the new year.

Happy New Year to all o you  ;D

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on January 15, 2010, 12:18:41 AM
Wow, time flies! I'm sure your anxious about more surgery, but are such a veteran, you know what to expect. Here's hoping everything gets settled once and for all for you in 2010! Good luck next week.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: skibum9 on January 15, 2010, 12:38:41 AM
Pam

I can't believe that it's already time for your next surgery, boy time sure does fly when you aren't paying attention. I sure hope things fuse this time around. Is the doc doing something different this time, or do the scrape out the old spot and put some new bone in?  Is he taking bone from the hip again? Ouch.

I say just leave up the Christmas decorations, that way it will be festive all year.

Bummer that you struggled with weaning off the cymbalta.

Good luck with your surgery. I will be thinking about you.

Sharon
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Roma on January 15, 2010, 09:33:25 PM
Hi Pam,
I responded to your reply to Decruz on his thread about Af success stories.  However, I haven't touched base with you for
a while on your thread.  I do hope this next surgery goes well for you.  You are a true hero in my eyes.
Do any of your children live near you?  I also have 6 children.  They are very supportive.  Only 3 of them live close to me. 

I would love to do some redecorating this year.  In my mind I have redecorated my house 50 times.  It is just so hard for me
to go out and shop though and look at paint samples and materials.  I am a touch feely type so I need to see most things, however,
I have been looking for some things on the internet.  I am taking my time because I am also a person who finds it hard to make
decisions when I am in pain.  I just think some new colors and accessories would do alot for my morale.

We all will be waiting to hear how this next venture goes for you.  You will be in my thoughts and prayers.

Roma
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on January 15, 2010, 11:38:08 PM
Hi Ladies  ;D

Thank you so much for all the wonderful support. It means so much. Each one of you have fought just as hard as me, with your own battle with AF. We all provide such good support for each other.

Janet,

I was happy to read where your knee is feeling the best it's felt so far with your TKR , even though there are some things that could be better. I hope you continue to see improvement and enjoy the ability to do more things.  ;D ;D ;D

Sharon,

I won't know til surgery whether he will take bone from the hip or from the heel. He will remove the 2 long nails/screws from my foot, remove the old bone graft and whatever other prep he will do, then add the fresh bone graft, and new nails. I'll have another 4 mos of NWB. I will find out when the bone stimulator will resume. It will be very difficult getting off the cymbalta , as I have found out thru experience and research. I will find out if I can wean off the neurontin first, as I think that will be easier. Some people have actually opened the cymbalta capsule and take out so many beads each time ,to wean down. How are you doing?

Roma,

I did see your post. It is another testimonial how devastating AF is to one's ability to function in life. You have it twice as bad living with AF in both knees. I don't know what I would do with both knees affected. You provide us with an excellent example of perseverance and grace as you continue to work helping others with your ministry.

All but one child lives in town. One daughter goes to school in California. The 2 oldest are married with families of their own. That leaves 3 living at home. The ones at home help out, when they are asked. My DH is the best, I couldn't ask for better. He keeps me sane.

I'm all for redecorating....you go girl ! That's just what the doctor ordered. You'll have to let us know how your decorating turned out.


Thank you again Janet,Sharon and Roma

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on January 22, 2010, 03:55:41 AM
Hi All

Well tomorrow is the big day for my subtalar fusion revision.. I have to be there at 8am. I met with pain management today. We went over the meds as far as the inpatient meds, popliteal nerve block and what I took when I went home. I think my pain level will be bad enough like last time but could be worse if bone graft comes from hip.OUCH! My hand PT made a molded hard plastic splint for me to wear, to protect my hand when using crutches.

I'll post when I can  ;D

Pam

Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on January 23, 2010, 02:20:27 PM
I hope everything went well and your pain meds to their thing! Let us know.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on January 28, 2010, 12:12:25 AM
Hi guys

Ihave not felt very well,so i will post when i am better

pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on February 02, 2010, 02:14:22 PM
Pam:

Sorry to hear you're not feeling well. Hang in there. Hope you're feeling better soon!!

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on February 05, 2010, 03:47:49 AM
Hi All

Well, I'm feeling a little bit better now. Last week I felt like total crap and slept down on the sofa. I was so weak. I thew up x2 on the way home from the hospital and then went thru 2 days of diarrhea , that wiped me out. I had to cancel PT appointment last week and one on Tuesday. I thought I was going to pass out Tuesday.  Friday nite , I finally made it up the 13 steps to our bedroom by crawling up on my rear. Sunday morn, I finally got in to take a shower. Boy was that a nice feeling  ;D

My OS had to do a triple arthrodesis. He removed all the hardware from the first fusion and fused the subtalar joint, the calcaneocuboid and the talonavicular joints. The subtalar had more healing on the bone since the CT , but the other joints were really worn since the first fusion. This was the source of a click I had. He used bone graft from my foot for the fusion. I was all prepped to have bone graft from my hip, but my doc felt he could get enough from my foot. Bone grafting from the hip is more invasive and painful. I have a very long incision on the lateral side of my ankle, This was above the previous incision last time.  I also have one around the heel. There were 2 small incisions  on the back above the heel where the achilles was. My nurse said he had to work on the achilles.

One thing I didn't count on once the dressings were off, was an open weeping wound. I have an infection in my foot. My OS has put me on 500mg of Keflex four times a day. He sent the screw off to pathology when he removed it and if came back with a bacteria he did not recognize.

My incision was dressed with this special dressing that was about an 1/8th inch thick piece of gel. I take it off in a week. If it is all gooey and drippy , then I toss it and replace it with gauze pad. If it is still like new then I can reapply it. They put on another plaster slab for one week, then in my boot.

I go back in 2 weeks to see how the incision is healing and hopefully no infection. If it is doing well, then I will go into a hard cast to hold my ankle tight.

I can't tell you how weak I am, more than any other surgical time. It takes so much energy just to get ready in the morning, then I am pooped and ready for a nap.

Pam

Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on February 05, 2010, 09:54:25 PM
Pam:

No wonder you haven't felt well with all you've been through and an infection on top of it. You have a definite right to feel worn out :-[ Hope that nasty infection gets cleared up quickly and you can start getting your energy back.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: skibum9 on February 09, 2010, 01:53:26 AM
Oh Pam, I have done that up/down the stairs thing on my rear. That is no fun. Sure hope you are starting to feel better. Sounds like your body is just pooped from trying to recover from all these surgeries.

Does the OS think the infection was the reason the first fusion didn't take? Did you have any blood work done in the last year that would indicate an infection? I ask because I have a lot of "issues" (non knee I think) and the ESR and CRP keep coming back negative.

Sharon
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on February 23, 2010, 11:04:23 PM
Hi All

Janet and Sharon, thank you for your replies.  ;D    Sharon- I've had blood checked and nothing showed up to indicate infection.

4 weeks post-op , triple fusion

I saw my ankle doc last week. My ankle is still infected. It is still draining. I have 2 wide apart areas of my incision where the infection is located. Sometimes my whole foot goes thru periods of redness, burning and intense heat. When this happens, it is very painful. Add that pain to the fusion pain , and add it onto the nerve pain. The OS wants me to go thru another round of antibiotics and back into the walking cast, so I can do dressing changes. I see the doc in 3 weeks. No hard cast til it is healed. OS says xrays of the hardware look good.  ;D

Pam

Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on February 25, 2010, 02:44:23 PM
Pam:

Any idea how it got infected? Is it deep in the ankle? If I remember correctly, you've had infections after other surgeries. Is there something in your system that doesn't respond to first-line antibiotics? I feel awful that you're having such a hard time once again. You deserve for something to be easy!!

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on March 12, 2010, 03:55:43 AM
Hi All

Today was my appointment with the ankle doc. There is some very good news. The doc says my incision looks so much better. It no longer is weeping and has filled in quite a lot. He feels it has healed enough for me to go into a hard cast. So today I got a short leg cast. The color is purple. I thought it was going to be a lighter shade of purple. Instead, it is a dark shade and is exactly the same purple as our rival college basketball team, so now I've been teased by family that I am a trader. I will have to put some big letters that say , GO KU !   ;D

Next week is PM doc , so we'll be able to start the weaning process of the oxycontin and morphine.

This has been a rough,sad month for me. It's almost been a year ( 3/23)  since my mother passed away. I've been reliving the last 2 weeks of her hospital stay , a yr ago, in my sleep every night. I've had very little sleep because of this.

It is now Spring break for the kids. I'm looking forward to my daughter coming home from college on the 18th. She'll be home 3 weeks.  ;D ;D


Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: winters on March 13, 2010, 05:49:55 AM
Pam, that sounds like good news!    When did getting a cast sound like good news?   I guess when you look at the progress it took to get to that point. 

I would like some more info re Cinnci but I don't have PM status.  Can you email me, please?   [email protected]  Thanks.
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on March 17, 2010, 08:28:56 PM
Pam:

Finally some good news  ;D ;D! It's about time!

Sad anniversaries are always hard. I don't want to pass on any platitudes, just to let you know that I'm sorry.

Hope things continue to go well and your PM doc agrees to start the weaning process. Have fun with your daughter. Three weeks is a nice, long visit!

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: solstice M on March 30, 2010, 04:37:36 PM
Hi Pam,

Sorry for the delay in thanking you for the suggestion of an arthrofibrosis specialist in U.K.  At least I have a name for a 2nd, 3rd opinion if I need to seek more opinions.

Hope your ankle infection has been satisfactorily sorted, you really could do without the extra angst, stress and discomfort that this brings.  I myself had an infection in the tibia after tib/plat fractures and know how this can make you feel.  Its another thing to cope with on top of everything else.  (My 2nd leg cast was also deep purple!)

Really felt for you as it was the 1st Anniversary of your mother's death.  It would be a difficult enough time anyway, even without all the problems you are having.  Being in hospital again and your own pain and concerns makes 'the pit' even deeper.  (I think the 1st anniversay of a loved ones death is the worst because inevitably, as you describe, you keep going into the events of the previous year and what was happening at that time a year ago.  I know its a cliche but next year, although obviously the sadness and loss will stlil be there, you won't be going over the previous year as much, and hopefully your own situation will be greatly improved.)

Thanks again and hoping that you have as good as possible Easter and continue too improve.

Regards Mia

Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on March 31, 2010, 03:42:23 AM
Hi Mia

Thank you so much for the kind words regarding the 1 yr anniversary of my Mother's passing. That was so sweet and much appreciated. It was a very sad and difficult time for me and my brother.

My infection had healed enough for my OS to place me in the hard cast. I'm anxious to see the incision when the cast comes off. I have about 3 more weeks  :P  I bought yellow puff paint to place yellow polka dots on it..haha  ;D ;D ;D ;D

I hope the names are helpful to you. We don't have many names beyond the US for AF. It's sad because so many come to the website beyond the US looking for help. Some have even traveled from the UK to the US to get treatment.

Thank you so much and best wishes. Let us know how you are doing and your treatment in the UK.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on April 08, 2010, 11:01:41 PM
Hi All

Well I'm now 11 weeks post op triple fusion. I have one more week in my cast before the next appointment. I am off the oxycontin and morphine without any problems. I've always been able to get off the pain meds. I am back on the percosets from PM doc. The down side to that is the nerve pain has become stronger and with more pain comes high blood pressure. I'm back on high doses of blood pressure meds. It got as high as 194/98. Had some hefty headaches too.

At pain management, I'm back to getting injections of spinal bupivicaine directly to the nerves in the knee. I had 10 areas to the posteromedial knee injected and a saphenous nerve block. This provided about 12 hours of 100% relief then the nerve pain comes back. This time it came back quicker than it had before. Plans to go back to Baltimore to Dr Dellon have been put on hold til an ins. problem gets cleared up. A big drawback to seeing Dr D is the fact he is a no ins DR.....cash only.  :o :o :o  So I'm trying to get reimbursed for out of network before I can roll it into the next surgery. I had to get a letter from Dr D to send to the ins co. The next surgery from him is to the distal saphenous nerve

I'll post about my ankle/foot OS appt on the 15th. It would be nice to take a shower without the cast and having to go thru wrapping it in glad press and seal then cast cover. My shoulders are screaming from the crutches and have to have surgery sometime this year.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on April 09, 2010, 08:55:25 PM
Pam:

Thanks for the update. It's good to see you're making progress. Hope that cast comes off next week!

What a pain to have to cover everything with Dr. D yourself then get reimbursed by insurance. I hope this means his rates are less because he doesn't have to hire something to deal with insurance issues! It just doesn't seem quite right, but then again, I know people come from all over the world to see him, so it doesn't affect his patient load!

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on April 09, 2010, 11:47:02 PM
Hi Janet

When I asked him how much would this surgery be, I about fainted.  :o :o :o :o :o  I told him there was no way I could do it. I was able to negotiate the fee down, still a lot , but within my reach. He was willing to be the "assistant surgeon" while another doc working ( I think Fellow) was billed the bulk, thru ins. I still had to come up with several thousands of dollars cash.  :o :o :o  I had to pay cash for my 1st consult too, but got reimbursed for that. It's a shame to come up with the cash since I have/had met my $3000 deductable !!!!!!  Add in the airfare, hotel and rental car, food $$$$$  However , he is the only one with the expertise with this problem.
 
Pam

Title: Re: Open Debridement and Proximal Z-plasty
Post by: MyKnee2010 on April 12, 2010, 12:01:44 AM
Hi Pam,

I just wanted to write & say Thank You!!! for posting about your knee experiences. I've been meaning to write & thank you for the last year. At that time, I was 5 months post my first scope & trying to describe my nerve pain to my Ortho doc. I couldn't seem to get him to understand the intense pain so I decided to go online to research for myself. I found one of your posts here where you describe your saphenous neuritis. At one point, you state something like "how to describe the pain - if I were an animal, I'd chew my leg off". That caught my attention because I had told my doc I felt like "cutting my leg off with an axe". That was definitely the same pain I was having!

Anyways, once I saw your phrase, I read your post, had a great eureka! moment, emailed my doc & said "this is everything I was trying to explain to you!" He gave me Neurontin which I couldn't handle at all (dizziness, pounding headaches). I then tried Amitriptyline which helped a great deal.

I have calcium deposits which build up in my knees & destroy my meniscus so I ended up having a TKR on that knee about 5 months ago. Now, the nerve pain is back - most likely more happened as a consequence of the TKR. I've increased my dosage of Amitriptyline which helped for a couple months but now the pain is getting worse again.

I go back Thursday to talk to my Ortho's PA. I had an appt with him a couple months ago & it appears he doesn't believe in nerve pain issues. I don't think he'll be of any help to me but I can't get an appt with my Ortho doc until the middle of May. In the meantime, I'm taking Vicodin which helps a little - and I am continuing to do research. I don't understand a lot of the terminology used in the posts here but I'm learning. It's wonderful to have this place as a resource.

Thank you again for posting about your experiences! It really helped me to open my doc's eyes & explain to him what I have going on with my knee. After reading all your posts to date I have to say you are an amazing person to go through all you have been through. My best wishes go out to you!

Phoebe
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on April 12, 2010, 06:37:46 PM
Hi Pheobe

Your post put a smile on my face.....NOT because you are suffering from horrible nerve pain, but because I was able to help you convey your nerve pain symptoms to your doctor. I am so sorry you find yourself dealing with this pain. Nerve pain is like no other. Nerve pain does not solely respond to narcotics. It requires a cocktail of meds that react to the various receptors in the brain. The best place to get this accomplished is a pain management doctor. OSs will only deal with short term meds. Neurontin is usually the first line of treatment. Yes, it can make you very dizzy and all sorts of other affects. It takes about 10 days to have your body get used to it. Another med is Lyrica. I tried that one for 11 days and had horrible side affects. I would rather have the pain then take that one. My OS said I had intractable nerve pain and sent me to pain management. My first doctor was terrible. He only want to push putting in a spinal stimulator, so I saw him once. I was given the name of another by a neurosurgeon friend of ours. The next PM doc was an anesthesiologist in a pain management group. Iwas very lucky to now have such a caring, non hurried, open minded doc. I went thru many different drugs , combinations, and doses and many dose tweeks. I also had injections of local anesthetic to the painful nerve trigger points which for me were neuromas. Once a month I would get 6 and now up to 10, injections of strong spinal marcaine, directly to the nerve. This gave me 12 hrs of total painfree.

The way for a doctor to tell if the nerve pain is originating in the knee or from the spinal nerves of the knee, is to do local injection directly to the nerves of the knee. If you have  immediate relief, then it is a true knee nerve. If you felt no pain relief, then the nerve pain is originating in the spine. Mine are all do to the peripheral nerves of the leg.

Last summer, my OS told me I needed to go to Baltimore to see Dr Dellon who was a world reknown peripheral nerve surgeon. I was to go there to have my knee dennervated.....nerve dectivated forever. I saw him in Late October and had first surgery in November. He did 8 procedures thru 4 incisions in my leg. I had many nerve problems in my knee and leg from my extensive leg journey. All the nerves he worked on are doing fine. I had additional nerves such as the distal saphenous, show up, and need additional surgery


If your PA has a problem , then he needs to be educated. Nerve pain is an overlooked problem of anterior knee pain. There are so many nerves in the knee, they get cut during surgery leaving their ends left to grow neuromas, or become compressed. This causes unending nerve pain. In my case, scar tissue wraps around forming neuromas. 

My pain management doctor has me on several meds to try to help with the nerve pain. I take Neurontin, Cymbalta- which helps with neuropathic pain, Clonidine-which helps with neuropathic pain and high BP, Celebrex, Lidoderm patches, Flexeril, Percosets, Volteran Gel, a specially compounded gel made from amyltriptaline,lidocaine,and neurontin. The doses have been tweeked many times to find better pain relief or better tolerance for me. I have suffered from side affects with these meds such as short term memory loss, gerneral memory loss, dizziness,blurred vision, fatigue, involuntary muscle jerks, night terrors, and weight gain. Another problem living with constant intractable pain is developing high BP, which I have ,so I am on maximum doses of BP meds too.

Don't give up. Nerve pain is a real casualty of knee surgery and doctors need to address it instead of leaving people to suffer. Dr Dellon is the best but you can also try to find a peripheral nerve specialist or a plastic surgeon who does intricate peripheral nerve surgery.

Thank for your kind words. I wish you all the success in the world dealing with this. I''m glad I was helpful.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on April 16, 2010, 05:05:40 AM
Hey All

12 weeks post triple fusion

Today was visit to ankle OS.....after 5 weeks, my purple cast was cut off ...hurrah ( happy dance) !!! It feels so nice to have it off, esp in 80 degree weather. My leg looked so gross. I was happy when they gave me a warm soapy washcloth to wipe it down. Xrays were taken. Everything looks good so far for 12 weeks. More healing needs to take place , so I'm back in the boot cast with an elastic brace to wear inside.I also am supposed to use the bone stimulator. Over the next 3 mos I should be able to walk longer distance, like a mall , in the boot getting down to a cane, then try going into my AFO brace with crutches, then down to the cane. If all goes well then I see OS in 3 mos for more xrays. At least I can take a shower with a naked leg,lol.

Tomorrow is a visit to pain management at 7:45am.  :o :o  Very hard to get ready so early, when on so many meds.  :P  I will probably have another round of injections to the knee . Stay tuned.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on April 16, 2010, 09:03:45 PM
Hey All

Today was my monthly appointment with pain management doc. I always have to fill out a pain evaluation paper. I hate filling those out. I just can't be cut and dry with my answers. My BP was high at 168/98 but my pain level was a 8. I was having nerve pain from the posteromedial knee all the way down the leg, to the ankle and top of my foot and toes. Full distal saphenous nerve.

I had marked seven neuromas on the knee. The doctor injected all the spots and also did a saphenous nerve block which involves injecting the medial tibia along the joint line. When he found the nerve , boy was that painful !!!  :o :o :o :o  He also injected another area nearby. Once the anesthetic started working the nerve pain started going away, even all the way down to the toes. This will last about 12 hours at 100% relief,hopefully longer,then a gradual return to full pain. I wish I could have the bupivicaine as a continuous saphenous nerve block to the leg, like the popliteal nerve block I had for my fusion.

There were no changes made to any of the meds I take. I told him I saw PCP last week and discussed my hypertension and increasing 2 doses of the clonidine. I told him when I was weaned off the pain mads for the fusion, that is when the nerve pain increased and BP was high again. He said I will most likely need to increase my morning dose, like I did to the other 2 doses.  If I do this, I will become totally useless with fatigue and drowsiness, in exchange for lowering my BP.

My PM doc discussed doing the cryoablation again as an option. I would have to travel to the University of Iowa medical center, to do this.They have one of those cryomachines. It could give about 4 mos relief up to a year, by freezing all the neuromas into an iceball. Something to ponder.

I told him about the insurance snafu with out of network reimbursement with Dr Dellon. I had to go thru an appeals process, which included a letter from Dr D, so that will take at least 30 days. As soon as I get reimbursement, then I can schedule surgery with Dr D.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: winters on April 17, 2010, 05:03:05 PM
Pam,

It's good to see the progress - slowly,slowly - but hopefully - steady.  The cast is gone, the recent PM appt and injections are done, so I hope now you have a rest period before dealing with more surgery with Dr. Dillon. 

Your meds are an incredible balancing act.  Just your meds balancing act would do me in.  You are one strong person to function in the light of all this 'torment' to one human body.  Do you also have any pt to do? 

It sounds like a good thing to boost our economy to get you mobile for longer time at the mall!! lol.  Glad you're having some painless time (no matter how short lived) from the injections in the nerves.  HOPEFULLY the nerve pain may actually not return to the same intensity as before.  That would be nice, right?

Polly
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on April 18, 2010, 09:14:58 PM
Pam:

Finally the cast is off and you have actual healing in your ankle! Good for you! I'm sure that shower felt really good. Hope the injections gave you pain relief for longer than 12 hours. When do you expect your insurance appeal to come through?

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on April 20, 2010, 01:38:48 AM
Hi Janet

I got a letter in the mail today from BCBS stating they received my appeals letter. It said they have to give me ,by law, an answer in 30 days or less. I'm looking forward to it. If they rule no reimbursement, then we will go to the state insurance commissioner. It can't come too soon. Last night was a horrible night for nerve pain. My leg was on fire all the way to the toes. I had lidoderm patches on the knee and foot.. very little sleep.  I guess the injections have worn off  :'(

Keeping fingers crossed !

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on May 15, 2010, 05:11:09 AM
Hi All

Today has been an interesting day.

First of all, it was another appointment with pain management doc. We discussed my treatment options which are narrowing down. At that point, I still hadn't heard from BCBS on their ruling to reimburse me the money I paid for surgery with DR Dellon. Getting monthly injections in the knee aren't providing long term relief. Today the doctor found a larger neuroma higher up my thigh just medial to where Dr Dellon resected the saphenous nerve. He felt injecting there would block the nerve all the way down to my foot rather than injecting the 10 sites I had marked and doing the block further down. It sure hurt when he hit the nerve. Afterwards I was so excited to have total numbing all the way down to my toes. I told him Dr D was going to do another surgery to do the other part of the nerve. My PM doc isn't so sure about doing this as resecting a nerve can cause more neuroma. I've now lost count on how many I have had. He said I might consider doing the cryo-ablation because it freezes the nerve or rather the axiom or "wires inside" without damaging the tube /mylan sheath the wires are in. He said it could take 4mos or as long as a couple yrs for the nerve to grow back and if it did, it would grow down the intact sheath. This would have to be done at the University of Iowa med center because they have the cryoablation machine. My PM doc knows the doctor who uses it and my PM doc also can use it since he is still on staff there. He said another choice would be the neurostimulator in the spine. He said I have exhausted everything else so I am now a candidate for having that as an option. The next thing he said kind of blew my mind. He said I can do a 5 day trial of the neurostimulator, yes, that is something that can actually be done. They do a minor procedure to attach it to the area of the nerve in the spine with the controller outside, then you set it at the level of control you need. It provides a different stimulus to override the nerve pain. If I felt I was helped with the pain, then they would remove the trial and schedule me for the implantable one. If I decided to go that route, then the neurosurgeon would do the implantation and who happens to be a friend of ours. They gave me information and a DVD about it. I said I would watch the DVD and research it on my own. A part of me finds this somewhat appealing as I am so tired of this pain.

When I got home and checked the mail, there was a letter from BCBS. What timing. I was excited yet prepared for it to say , denied! When I opened it and read it , I was so happy, they had ruled that they would reimburse me for the surgery and I should be getting a check within a week. I had planned on rolling this money into the next surgery with Dr D. After today, I have more questions to ask Dr D and if there is another surgery, he will have to write BCBS a letter ahead of time about the requirements of the next surgery to get an approval ahead of time, so I don't have this happen again per BCBS.

Sadly as the evening has gone on, my block is wearing off. The burning and pain is returning. I thought it would have lasted longer, injected and blocked, higher up . It WAS so nice to be nerve pain free. It makes you feel like a whole different person.

Lots to think about. I see PM again in 2 weeks.

Pam


Title: Re: Open Debridement and Proximal Z-plasty
Post by: winters on May 18, 2010, 04:17:40 AM
Hi Pam,

Hooray!!  for the victory with BCBS!   It's not easy to suceed with the ins companies.

Sorry the injection for the nerve did not last very long.  I'm sure they are no fun - and you would at least like to get some relief for a significant period of time.  Your nerve pain issues (causes, possible treatments, etc) are sooooo complex.  Surely something is going to work - if you can just hold out long enough.  You do have great support and KGers are all behind you - hoping you soon find a more pain-free existence. 

Are you the local guinea pig for testing all the pain medications?   Well - we appreciate you testing them for us all!  Seriously, I hope you get the combination that works longterm defined soon - and find a life without nerve pain.  Sounds like the nerve abalations have promise - I like that they have a pre-test available. 

Keep us informed.  We all wish you the best.      Polly
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on May 19, 2010, 01:39:31 AM
Pam:

That is a lot to digest. Wow. Now the options are coming out? Knowing you, you'll do all your research  ;D and make the best choice. It's one of those good things/bad things scenarios....good to have options/bad to have to decide which is best. Let us know what you decide.

Congrats on the BCBS ruling. Getting a check in a week is a very good thing!!

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Susan W. on May 26, 2010, 08:44:38 PM
Hi Pam,

I'm another one following your progress with personal interest. You really are an inspiration and I can't imagine how you remain so positive with all you go through.  I corresponded with you a while back about my own saphenous nerve problems.  I am still considering what to do next as Dr Dellon had no recommendations for anyone in the UK.  It's difficult to know what to do; my problems are long-standing and I don't want to do something that makes it worse over time, but I guess there are no guarantees in life - and definitely not where our knees are concerned!

I hope the cryoablation gives you some long-term relief if you go down that route.  As for the neurostimulator, kateplate posted her experience of getting one a year ago.  The section where you can read about it is:  Re: conflicting advice...getting worried.....finally think it's sorted - yippeeeee!!  She was happy with hers. 

Susan W.

Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on May 27, 2010, 12:19:40 AM
Hi All

Polly, Janet and Susan

Sorry it has taken so long to respond to your posts. My son graduated from high school last Saturday, so it has been a busy time the 2 weeks prior to the ceremony. He was the last of our 6 kids to graduate ! It was exciting and sad at the same time. All our kids and their spouses and one of our grandchildren were there.

I haven't made any decisions yet- I still need to email Dr Dellon the latest and talk about the next procedure to be done and the success rate. I can't keep having neuromas and nerves resected. I also have a motor problem with my foot, I can only move my Great toe not the other 4.

I have researched some on the neurostimulator . I'm leaning more towards this not being the right thing to do at this time in my life. My husband I and ride motorcycles. For the past 2 yrs , I 've been passenger only. There is a certain amount of vibration and heaven forbid, spilling, that could break or knock wires loose in the spine. This could cause severe damage to the spine. I am also concerned/petrified about developing scar tissue in the spine from the procedure.

The cryo is more appealing than the neurostimulator.

Thank you all for the concern and encouragement. Thank you Susan for the reference to Kateplate;s experience with the stimulator. I will read it.

Pam

p.s.  No check from BCBS yet  >:(
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on June 09, 2010, 03:07:52 AM
Hi All

Last Friday was another appointment with the pain management doc. After 20 mins of discussion concerning the neurostimulator and cryoablation, I decided that I will try cryo ablation first. It is much less invasive, can be done over and over and I have nothing to loose by doing it. The neurostimulator is something I will consider at a later date. I had several questions for the doc about the NS.

The PM doc is going to contact the University of Iowa Med Center about doing this procedure. They have a cryoablation machine which freezes the neuromas into ice balls. He knows the doctors involved and will talk to them. It would involve a 4-5 hr drive and a couple days stay. So right now I am waiting to hear from them. My PM doc feels I am experiencing anesthesia dolorosa and deafferantation pain which each one on its own causes severe pain. His opinion is that more nerve surgery will just cause more neuroma formation.

I did get 4 injections to the knee this time. Two were blocks to the saphenous nerve , one in the thigh and the other below the knee to the tibia and 2 injections to the most painful neuromas.

I haven't emailed Dr Dellon yet but want to hear his opinion on this and what more he could do and make it a success.

In the mean time, I'll be waiting to hear from U of Iowa.

I still have not received a check from BCBS yet !  >:( >:( >:(

Pam

Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on June 10, 2010, 03:10:40 AM
Pam:

It's good that you have something else to try. I agree that it sounds like there's nothing to lose by trying it...except time, money and sanity! Actually, the real hope is that you'll lose the pain  ;D.

What is anesthesia dolorosa?

Hope that check comes soon!

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on July 08, 2010, 05:03:40 AM
Hi All

Here is another update,

It has taken 2 phone calls to BCBS to find out when I will be getting my reimbursement check from my grievance approval. Today I finally talked to the person in charge. He told me it takes 30 days. I said it has been 60 days ! After he did some checking, I was told that it didn't make thru all the proper channels and got "lost" along the way. ( yea, right >:( ) He said it has been corrected and I should get it soon......yea, sounds like the dog ate my homework excuse.

Since my last update I have been talking to Dr Dellon quite a lot thru emails. I informed him of pain managements thoughts on my treatment plan. I said I was a little confused on some things. He feels very strongly that I need to get back to Baltimore to see him so he can evaluate my nerve pain. He needs to see if one of the resected ends to the saphenous nerve has come out of the the muscle where it was buried and also see if another nerve branch or branches is causing me the trouble. The findings will determine more surgery. I will probably see him in August.

I've made an appointment to see Dr Noyes July 27th.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Jill M on July 08, 2010, 01:42:33 PM
Pam,
Sorry to hear that you are still waiting on your reimbursement check from BC/BS. If you were not an educated consumer who knows what could happen along the way.
I appreciate all of your posts. You are inspiration to me. My problems seem minor compared to what you face on a daily basis. Wishing you the best on your upcoming appointments.
Jill
Title: Re: Open Debridement and Proximal Z-plasty
Post by: stacey123 on July 10, 2010, 06:13:53 PM
Hi Pam,

I will be going to see Dr. Noyes on July 22nd and hope that he will think I am ready for surgery and then I can use the website you provided to me fro housing. I hope you get good news at your appointment on the 27th. Good luck!
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on July 12, 2010, 04:52:13 AM
Hi Jill and Stacy

Sorry I didn't reply sooner, I've been out of town since Thursday and just got back tonight.  Thank you for the supportive and nice compliments. You make me blush  :-[   

Stacy, good luck on your July 22nd appointment. I think I am going to change my appointment to sometime in Aug. The PT I want to see will be on vacation. Besides Dr N , I want to see the head PT too, esp after driving 10hrs.

Busy week this week with appointments with ankle OS and pain management.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: stacey123 on July 14, 2010, 12:22:41 AM
It is funny that you mention that the pt you want to see will be on vacation. Clearly this is Tim because I called and spoke with him the other day to make sure he would be in on the 22nd and he said he would but that the following week he would be out. He went on to mention that another patient that travels to see him was scheduled on the 29th and he would not be there so that I picked a good week. Funny how small this world can be. I don't blame you for wanting to change your appointment. Although I have never met anyone else in pt I really enjoyed working with Tim and he spent many hours with me.
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on July 14, 2010, 03:54:57 AM
Hi Stacy

Small world indeed  ;D  That would be me. I wrote Tim an email explaining that I wanted to make sure he was there...he helps translate Dr N sometimes. He gave me the times he would be there in August , so I can schedule when he is there.

They've added some new PTs and looks like they lost one ( Lindsey) and another is now working up in clinic. Another person in PT good to work with is Amy. The others I don't really know unless they moved some over from one of the other clinics. Al was just as good as Tim and did the best patella mobes and scar tissue break up ( because Tim would say Al has younger hands lol) but I guess he now works up in the clinic.

Had to get a CT scan of my midfoot where one of the joints , the calcaneal-cuboid, was fused. The amount of pain I am having is suggestive of a nonunion.

Tomorrow is pain management to get nerve injections and blocks.

I FINALLLY GOT MY REIMBURSEMENT CHECK FROM BCBS.........yippee !... hurrah !  ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D

Pam

Title: Re: Open Debridement and Proximal Z-plasty
Post by: Jill M on July 14, 2010, 01:13:41 PM
Pam,

Glad to here you finally got your reimbursment check from BC/BS!!! Wishing you the best with pain management appointment today.  ;)

Jill
Title: Re: Open Debridement and Proximal Z-plasty
Post by: stacey123 on July 16, 2010, 02:05:59 AM
Pam,
Glad to hear you got your check, ridiculous how we have to push so hard to keep things moving in the systems that surround us! Thanks for some name dropping for other pt's in case Tim isn't there. Between the two of us we will get Tim's hands moving those patellas, young or not. What is a nonunion? I hope I can get some pain management when I have my surgery. I was given hydrocodone which only gave me nightmares, and oxicodone which didn't do anything either.
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on July 22, 2010, 05:40:02 AM
Hi Stacy

I am now rescheduled for Aug 10th to see Dr N and Tim. A nonunion is where there is no bone growth between 2 bones that need to be joined together such as with a fracture, fusion, osteotomy or bone graft.

Have appointment next Thursday the 29th to find out results of CT of my midfoot.

Good luck on your appointment tomorrow  ;D

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: stacey123 on July 23, 2010, 02:37:41 AM
Nonunion, I knew it didn't sound good.  Dr. Noyes was very pleased with my ROM but in a very polite way told me I needed to lose weight before having my ligaments reconstructed. So, battled the ROM, now must battle the weight. I told Tim that we had been in contact and we were really going to work his hands. He said it will be a good thing for him to get a rest before you come in, but I didn't work him that hard so he will be fine. Good luck and have a safe trip when you go.
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on July 23, 2010, 03:53:00 AM
Hi Stacy

Ha ha....glad you didn't work Tim too hard. Yea, Dr N is really big on weight. It is to give the patient the best results since weight causes so much stress to the knee. I'lll be surprised if I'm not told that either, however it was caused by all the meds I'm on with pain management and from being sidelined with this ankle fusion for 18mos. I thought by now I would have been over this.

The new group of Fellows should be starting in August.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on July 25, 2010, 02:38:02 PM
Pam:

I'm finally getting caught up. This has been such a busy month at work and preparing for our son's wedding in August, I don't know where the time has gone.

Glad you finally got your check from BCBS. That's one battle won!

Sounds like you'll have a lot of appointments in the next few weeks. Hope it isn't a nonunion in the foot. Let us know.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Jill M on July 30, 2010, 01:27:44 AM
Pam,

I hope you got good news about you CT scan today. Praying that it isn't a nonunion in the foot.

Jill
Title: Re: Open Debridement and Proximal Z-plasty
Post by: stacey123 on July 30, 2010, 01:59:12 AM
Pam,

I am glad that Dr. N is so thorough. I have needed to lose anyway so now I have extra incentive. I think any other doc would have just operated regardless of the increase in failure when you are overweight. If they are getting new Fellows does that mean Dr. Hartman won't be there? I really liked him. Have you ever tried weight watchers. I am and it seems to be working so far!

Stacey
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on July 30, 2010, 02:27:12 AM
Hi Jill

If it weren't for bad luck, I'd have no luck at all........bad, bad news today with CT scan results. Two of the 3 joints that were fused, are nonunion. The calcaneocuboid and the talonavicular. The talonavicular has no growth at all.  The calcaneocuboid joint is the pain on the lateral side of my foot just in front of the ankle bone and the talonavicular joint is where the horrible sharp pain shoots up the middle of the foot.The doctor showed me on the scan what it looked like and sure enough, it is nonunion. OS said I described my pain and symptoms perfectly to coincide with the CT scan. The Subtalor joint is fused.....that was the joint last yr that was nonunion.

So, the plan is to stay in the cast and use the bone stimulator and come back in 7 weeks. If no bone growth then back to surgery to put in another bone graft. He used bone from my foot this past time and some synthetic but if he does it again, it will be from the illiac crest. I could hardly keep the tears back. 

Major, major bummed out........ :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'(

pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Jill M on July 30, 2010, 12:58:08 PM
Pam,
I am so sorry to hear the bad news. Sending you virtual hugs and prayers your way. Sure hope that more time in the cast with bone stimulator will stimulate more bone growth and you will not need further surgery. Keep us posted.
Jill
Title: Re: Open Debridement and Proximal Z-plasty
Post by: lenorem9 on July 31, 2010, 10:37:50 PM
So sorry to hear this Pam.  I was hoping the ankle would be healing great by now.  Can't even imagine how frustrated you are with it. 

Unreal, you have a knee that produces so much scar tissue it fuses all together but an ankle that won't fuse no matter what. 

Hope that bone stimulator does some serious stimulating.  We're thinking about you and sending good thoughts.
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on August 01, 2010, 02:23:17 PM
Pam:

I'm soooo sorry! You just can't catch a break. (OK, that was probably a bad choice of phrase!) Here's hoping the bone stimulator works and surgery isn't needed.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Susan W. on August 01, 2010, 05:21:31 PM

So, so sorry to hear about this.  If all the good wishes sent your way were to join together you'd surely be healed and running by now.  If only it worked that way!  But you have a whole bunch of us who have you in our thoughts and wishes.

Susan in UK
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on August 02, 2010, 06:11:10 PM
Thank you Jill, Lenore, Janet, and Susan.

I'm using the bone stimulator and still very bummed out.   :(    This week happens to be an appt with PM shrink....lucky me

Thanks for all the happy thoughts, I need them.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: kcknee on August 03, 2010, 06:08:00 AM
Pam-

I'm really sorry that you are having to go through this.

Hopefully your luck changes and the additional time in the cast and the bone stimulator will work for you and you can avoid another surgery.

Kristin
Title: Re: Open Debridement and Proximal Z-plasty
Post by: skibum9 on August 04, 2010, 03:38:00 AM
Pam

I have been in the background following your progress. I'm real sorry to hear of the nonunion. If it weren't for bad luck, you would have no luck at all.  Sending some good luck your way for the bone stimulator.

Things are the same on this end. One day I will get around to bringing you up to speed. Things are some where between totally crazy and totally exhausted, so not much time for anything but work. At least it keeps me from thinking about the knee.

Take care and say hi to the gang at CSM for me.

Sharon
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on August 04, 2010, 10:24:07 PM
Hi Kristin and Sharon

Thanks for the support. Saw PM shrink, decided to increase appointments during this down time. He also will be seeing me after next ankle OS appointment.  :(

Hey Sharon nice to hear from you. You need to fill me in on what's been going on with you.   ???m

Thanks guys

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on August 11, 2010, 10:31:02 PM
Hi All

Traveled to Cincinnati to see Dr N yesterday. Cincinnati skyline is always impressive at night, as we come over the hill from the south, on I-71.

This time my appointment was a little different. Not only was my left leg checked, but I had Dr N check my other knee too. I had been experiencing pain and crunching under my patella esp with stairs. He did a thorough exam of both knee. My bad knee, the left, had scar tissue crunching below the patella that had gotten worse and was now crunching around the lateral side and above the patella. When he checked my stability he said my knee was very sloppy in regards to the ligaments and asked why I was not wearing my Donjoy Defience brace. I said I can't fit it very well with the cast on. So I am supposed to wear my brace and put the cast over it. On the scar tissue , he wants to wait a little longer before he goes in with a scope to remove it.

I had both knees xrayed. The new knee shows signs of arthritis to the patella. When he did the physical exam , he told me something I did not expect. When he was examining the medial side, which was painful, he said I think you have a torn medial meniscus. So he wants me to get an MRI when I get back home and have it sent to him to read. If it shows a meniscus tear, then I would need that knee scoped.

He gave me 2 cortisone shots, one to each knee, The knee with the scar tissue, he had a hard time getting the needle in because of the scar tissue.  So if the scar tissue progresses further then it will be scoped and now the other knee will have an MRI and see if it shows a meniscus tear.

Went down to PT after that. Do to my ankle fusion not healing and not wanting to cause the nerve pain to worsen, there wasn't a whole lot I could do. Basically I'm down to just doing quad sets, SLRs and elastic band work.

All I need is more knee problems on top of everything else

Pam

Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on August 13, 2010, 04:13:38 PM
Pam:

Our "good" knees really take a beating through all this too, don't they? I sure hope you don't have a torn meniscus.

Two weeks ago I feel very hard right onto my good knee. Thank goodness it wasn't the other one! Anyway, it swelled up and got really bruised, which then proceeded to run all the way down the front of my leg and my ankle. So now I'm really bruised up, although it is finally starting to turn yellow and the swelling is decreasing (although it still has enough fluid that I can squish it around from side to side). Luckily, the knee isn't sore with any physical activity, only to the touch. I'm assuming I didn't do anything serious since I can function without pain. But if the swelling doesn't subside in a few more weeks, I'll probably have it checked out. Right now, I just want the bruising to go away before my son's wedding in two weeks!

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Jill M on August 14, 2010, 01:55:51 AM
Pam,
Thanks for the update. Sure hope that you don't have a torn meniscus. You have enough on you plate to deal with.
Keep us posted on your MRI results and of course the healing of the foot. Keeping you in my thoughts and prayers.

Jill
Title: Re: Open Debridement and Proximal Z-plasty
Post by: MariaT on August 14, 2010, 12:40:13 PM
Hi Pam,
So sorry to hear you didn't get good news :'( I hope you get some relief from the cortisone shots and that the bone stimulator does its job. Try to hang in there, I know it's hard though.
I have to go back to your earlier posts so I can catch up and see your history with your knees & ankle. Are you still in Cincin or did you head back home?
Maria
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on August 15, 2010, 11:56:45 PM
Thank you Janet, Jill and Maria.

We got home last night from our trip through Ohio. DH had a business meeting in Akron on Friday so we found some things to do in between that time. We drove all back Hwys up there and home. It was fun to go thru all the small towns and see the countryside. The corn came right up to the Hwy. Traveling by interstate gives you a sterile view of America. We even drove up to Lake Erie and drove along the coastal highway, till we got to Sandusky, then had to head down and west to go home. While DH had his meeting, I was dropped off at a nice mall to do some retail therapy.

I can stand to hear some good news for once.  :P  Right now I'm numb about everything. Tomorrow I have to call up to Cinci to tell them where my MRI will be at so they can call and get it all arranged. I also have an appointment tomorrow morn with PM doc for another round of nerve blocks and injections. Another KG in a different section had cryoablation to her infrapatellar nerve. She had a horrendous experience that she described as pure torture . I had been posting on it just before she had it done. I don't think I'll go that route.

http://www.kneeguru.co.uk/KNEEtalk/index.php?topic=52347.0

http://www.kneeguru.co.uk/KNEEtalk/index.php?topic=52416.0

Janet.

Congratulations on your son's upcoming wedding. I hope your knee heals quickly so you can enjoy every moment without problems. I've had 2 sons get married so far , so I know how mother of the groom feels. I also know how mother of the bride feels too  ;D  Try to relax and enjoy the moment and have fun. Let others take care of any last minute details. When my oldest son got married, one of the groomsmen was missing his tuxedo pants. Fortunately at the time , the rental place was not far away. He was a good sport and allowed some funny pics standing next to the other dressed groomsmen, with him sans pants, just boxer shorts, shirt, tie and black socks.  :-[  Someone retrieved his pants just in time to start. We still laugh about that.

Congrats again and let us know how it all turned out !

Tonight we are taking 2nd son, DIL and their 6 kids out to eat at Cracker Barrel.  :o  5 kids are under the age of 6.  :o  It should be a lively time.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on August 16, 2010, 01:40:15 AM
Pam:

You were kind of in my neck of the woods! I grew up outside Cleveland, and now live outside Detroit. I went to Kent State University, not to far from Akron. We go back and forth past Sandusky all the time. If you ever get this close again, let me know. Maybe we could meet up!

I know I'm only the mother of the groom, but have been very involved in all the wedding stuff. Bride's parents have no money, so we're helping out so have been part of most of the preparations. I also volunteered to do the programs, place cards, etc. because I do a lot of publishing in my work and I enjoy it. But it's all last minute stuff, so I'm very busy right now. I think we have almost everything ready to print. My goal is to have everything done by Friday, so I have the weekend to think about what I need to pack. We leave next Tuesday morning. We're getting there early enough to help the kids with last-minute things. I really enjoy all this, but want to be able to relax and enjoy it once the big day comes....which I'm sure I will.

I can understand how numb you must be. It just never ends for you. Through it all, you keep an amazing attitude and are such an inspiration. Hopefully your (crazy) lively dinner will give you a lot to smile about today and take some of the anxiety away, at least for a while.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on August 16, 2010, 04:53:37 AM
Hi Janet

I can't imagine having an out of town wedding. Ours were all in town, although my ex son in law's parents were from a town about an 1 1/2 hrs away. At first they wanted to have it halfway between our houses but I said no. Since we were paying for everything, I needed the ability to have things close by so we could meet with the various people involved. We also payed for most of our 2 sons weddings. One DIL came from a single mother and other DIL's family didn't have much money either. Enjoy the moment and keep a hankie handy.

I'll take up your offer of meeting the next time I find my self in that region  ;D ;D ;D

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: MariaT on August 17, 2010, 05:20:57 PM
Pam,

Sounds like you had a nice trip back home :D Love the way you write...very descriptive! Good luck with the MRI and please post us on what the results are. Does Dr N want you to go to a facility that has a T3 machine? It's supposed to be the best, very sensitive. He insisted I did a T3MRI. They can be hard to find but Donna found a place in Baltimore.
I STILL haven't heard back from Tim! Was he there? I just wrote him another e mail with a pretty important question so I hope he responds. My knee is locking or catching, not sure how to describe exactly but it gets stuck! My PT back home here thinks it'd because I have no ACL currently and also that my muscles are weak. I sure hope she's right. I have an appointment with Dr D next week so I will see what he says.
Was there a new group of "fellows" there? I liked Dr Hartmann. I saw him the first time I went but not the time I went out for surgery.
Fingers crossed for you!
Best,
Maria
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on August 17, 2010, 07:43:54 PM
Hi Maria

I don't think there is a T3 MRI where I live. I checked several places and they just do the regular ones. I gave Donna the name of the place I plan on going. I haven't heard back from her, but today is clinic so it's a busy day.

Tim was there . It was busy as usual, getting patients ready for surgery, the following day. It was come and go PT with him. Make sure you mark your emails " Urgent update from your location". Hopefully he will answer , if not, send another one.  I had your Dr D when he was a Fellow. That fellows group of 4 docs, contributed to Dr N's new text book out called, " Knee Disorders".  I looked thru it on Donna's desk. I looked it up on amazon and read thru some of the chapters. Dr N's forward was very good. It gives you some unexpected insight into Dr N. Pretty touching at times. I thought it was very good.  I did notice they listed Dr D's office as being in Towson Md. The peripheral nerve surgeon I see is in Towson. I had my surgery at Union Hospital. He is professor of plastic and neurosurgery at John's Hopkins. He is the only professor allowed to have his own office/practice away from JH.

When I was there, the new Fellows had not started, at least not in the clinic. Dr N was doing it all on his own. It was nice because I got more time with him.

I hope Tim answers you soon.  ;D

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: MariaT on August 19, 2010, 06:29:14 PM
Hi Pam, how's it going? Did you schedule your MRI yet? I'm not surprised that you couldn't find a T3 machine, like I said there is only 1 in my area at Johns Hopkins. More & more I'm feeling like the best diagnostic tool is a scoping of the knee or joint involved. It seems that the MRI diagnosis never exactly match up to the diagnosis once the surgeon goes in and looks around.Have you found that to be true?
I looked up that book you were talking about. WOW! :o It comes with DVD's too! Expensive also :P Would love to read it though....maybe I can find a used copy for a reasonable price.
So I finally did hear back from a very apologetic Tim. Apparently they switched servers and emails were slowly trickling in. He agrees with my PT home and feels my locking/catching is due to ACL (lack of) and muscle weakness and not my scarey thought that the bone grafts were migrating. Funny how he read my mind because I was thinking that but didn't say it but he did!
That's all for now. Hope all is well with you. Did the cortisone shots help at all for you?
Ciao,
Maria
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on August 27, 2010, 09:52:16 PM
Hi Maria

I did have my MRI. I had it this past Wednesday. Lying inside the MRI tube, with the lights and sounds, made me think I was in a Star Trek scene calling for Scotty and asking for the dilithium crystals......hahaha.  ;D Ummm... ::)... They sent the disk off to Cincinnati for Dr Noyes to review. They burned an extra copy for me. I was hoping I could see it on my computer, but it didn't work. Has anyone been able to view their disk?  I expect I won't hear anything til the end of next week or beyond, since it was sent via snail mail.

Got some moderate relief from the shots but it's worn off....back to that pain, to add to the nerve pain.

Glad Tim responded to your email  ;D

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: MariaT on August 28, 2010, 02:24:14 AM
Hello Pam, this is going to be a short one. I'm tired! Glad to hear you had the MRI. Fingers crossed. I have a copy of my MRI and I can't remember if I was able to view it. I will check & get back to you. My memory wants me to say yes.
More later!
Maria
Title: Re: Open Debridement and Proximal Z-plasty
Post by: skibum9 on August 28, 2010, 03:30:51 AM
Hi Pam

There should be some sort of viewer on the disk. Depending on where I have had mine done there were different viewers. One works with explorer. However if you use a different internet browser as the default then there can be issues. I have issues viewing the MRI results with firefox. The other place provides some third party software to view. There should be a read me file on the disk that may help. Also, I think that Diacom makes a viewer that you can download.

Let me know if this doesn't work, I may have other ideas.

Sharon
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on August 28, 2010, 04:03:15 AM
Hi Sharon

I have an Apple laptop which has Safari. I load the disk, nothing comes up and I can't find it anywhere. Grrrrrr >:(

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on August 28, 2010, 04:39:16 AM
Hi All

I finally found it ! It took some digging around ,but I found it. I looked at some other medial meniscus tear images and this looks a lot like them Just have to wait and see.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Jill M on September 03, 2010, 12:00:52 AM
Pam,
Sorry I have been MIA for a few weeks. I am glad to hear you got your MRI done. Now is the hard part, waiting. Keep us posted. I am keeping you in my prayers.

Jill
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Roma on September 03, 2010, 12:35:03 AM
Pam,

I am so sorry to hear of all your troubles with your foot and now your good knee.  I will be anxious to hear how your MRI goes. 
Sometimes it seems like there is no end to everything.  I also have alot of crunching under my patella.  It is actually worse on
what I consider my good knee.  I can put my fingers just above my patella and feel the crunching when I am riding my recumbent
bike.  Everytime I get up out of a chair you can hear my knee crunch and I can feel it.  I feel like a rice krispy but I am not sure
whether I am snap, crackle, or pop. 

I smiled when you said you were going out to cracker barrel with your son and his wife and their six children.  Boy do I remember
those days when mine were alll under 6.  I had twins so actually I was pregnant only 5 times in six years.  Notice I said only. 
Actually, I consider those the best days of my life.  I loved being a mother.

I will continue to keep you in my prayers.

Roma

















Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on September 14, 2010, 04:19:46 AM
Hi All

Roma 

My Son and DIL have twins also. Twin boys that are 18 mos plus a a little girl that's 5mos and a 4,6,15 yr old.  :o  I had six kids but did mine in pairs....2 in the 1970's , 2 in the 80's and 2 in the 90's.

It's been about 3 weeks since my MRI and I haven't heard anything concerning my MRI.  I called up to Cinci to see if they received it and if Dr N had a chance to read it yet. The answer was yes, they have it, but it is still on Dr N's desk to be read. She said she was hoping he would be able to do it sometime this week.

Busy week coming up:

On Thursday I go back to my ankle OS to see if there has been any improvement in bone growth from using the bone stimulator.It will be determined if my fusion needs to be regrafted with bone from the hip. It would be nice to know about the MRI going into Thursday's appointment. Oh well......

Friday is appointments with pain management Doc and PM shrink.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Jill M on September 14, 2010, 12:35:49 PM
Pam,

I will be keeping you in my thoughts and prayers this week as you go to your appointment regarding your ankle. Hope the bone is growing and no further surgery is necessary.
Hope you hear something soon regarding the MRI. Sure is no fun waiting.

Jill
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on September 17, 2010, 04:34:31 AM
Hi All

I really think I am stuck in the movie Groundhog Day, in a bizarre way. I had my appointment today with the ankle OS. There has been no change in bone growth at the fusion sites. So, I have to have surgery.... again. He will take bone graft from the hip, use a plate on one of the joints, put in an implantable bone stimulator and remove some of the large staples in the foot. The implantable stimulator works continuously for up to a yr,then it is removed or stays in. I don't remember what he said he will do on that.  ???

Once again I did everything right and don't get results.  OS said I was a very difficult case. I said, well, you know my history with this leg.....he said.. yes.  I trust my surgeon. It's hard to predict a non fusion, it is a complication that can happen.

I tried to prepare myself for this, but it still is upsetting. I have invested almost 2 yrs dealing with this fusion with 2 surgeries already, wearing a cast all this time. It's like dragging a ball and chain around. This puts my nerve surgery further back.

I'm pretty depressed right now. I'm glad I see PM shrink tomorrow when I see PM doc.

Pam

p.s. I haven't heard yet about my MRI. Probably a good thing at this point. This will put more stress on that knee, which is why I have a problem to begin with.....uhhh !

This is a long p.s....this morning the 17th, I got a call from Cinci with some good/not good news. The good news is I don't have a torn meniscus. The bad is I have a lot of arthritis. Dr N suggested I start doing synvisc, but I will hold off for now.

Also, today I got 14 injections to the knee for the nerve pain.
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on September 18, 2010, 06:48:41 PM
Pam:

So sorry to hear of this latest set-back. I can't imagine how frustrated you must be. But what can you do? You have to just keep moving forward with your treatments and praying that the next one will be the answer. At least that's my prayer for you. At least there is a little bit of good news that the meniscus isn't torn. Keep us posted.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on September 18, 2010, 11:17:24 PM
Hi Janet

Yes, I am relieved I don't have a torn meniscus.  ;D  ;D

I was researching nonunions and came across one of the biggest causes of nonunion:  SCAR TISSUE forming on the bone ends !!!!!! That could explain why I have had 2 nonunions, given my AF history  :o  I did everything correct...took calcium, prescription Vit D, actonel and external bone stim just to most likely have evil scar tissue sabotage once again. I'll have to run that by my OS, unfortunately I don't see him again til surgery.

Janet

How was your son's wedding ?  Is this your first child to get married ?

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: lenorem9 on September 19, 2010, 12:17:04 AM
Pam, I'm always amazed when I read your posts and see that you're fighting yet another setback.  It's so frustrating when you do everything right and it still doesn't work.  Unreal.  You are so strong and bounce right back from everything that happens to you with smiley faces and humor.  Keep on fighting and I'll keep hoping some of those smiley faces heal that stubborn ankle this time around.   ;D :D :) :-*
 
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on September 20, 2010, 12:26:32 AM
Pam:

Thanks for asking about the wedding. Yes, it was absolutely lovely! We had such a good time and they were so happy and in love.

I had no idea nonunion could be caused by scar tissue. What a revelation! I'll be interested in what your doctor says about that!

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Jill M on September 20, 2010, 01:18:46 AM
Pam,

I am so sorry to hear of your latest setback with the nonunion in the foot.  I hate that you have to face another surgery. I will be praying that the surgery will start the healing process in those bones. I also was unaware that nonunion could be caused by scar tissue. Sure makes sense now that you researched it.
Good news on the MRI report as far as the meniscus goes. Hopefully that arthritis will hold off it's progression for a long time.
I can't imagine how frustrated you must be at this point.  Your amazing strength will bring you through this.

Jill
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on September 21, 2010, 04:43:34 AM
Lenore, Janet and Jill

Thank you so much for your kind words and encouragement. I am truly lucky to have the support of a wonderful husband and my AF friends. Next to my DH, you guys understand the most of what I have gone thru, because you are making this difficult journey yourselves. I just had my 10th anniversary dealing with AF and all these surgeries.

I have a date for surgery. It will be Oct 18th. Just 4 short weeks from now. Hospital has changed how things are done. I now have to have an appt with anesthesia ahead of time, instead of when I'm in pre-op. OMG, Jill, I just realized we are having surgery the same day  :o

I'm dreading the bone graft from the pelvis. I've heard it is very painful.  :'(

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Jill M on September 22, 2010, 01:39:10 AM
Pam,
Glad to hear you have a surgery date. Yes, looks like we will be hitting the OR the same day. Big prayers for us both that this will get things moving in the right direction.

Jill
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Teresa_S on October 06, 2010, 05:40:57 AM
Hi Pam, sorry to hear about the repeat surgery. Scar tissue issues never end. I read in your post about using synivisc, is that on your tkr knee? If so, it will help anyway?I know that now they have a one shot dose instead of the three.Are you taking the 50000 u Vit D. My new GP put me on 50 000u daily for a week then weekly. I notice no real difference.

My mums this year are over 3 1/2 foot tall and about 4 ft or more across and around. They are huge!!! Right now the annuals that grew tall and pretty are all blooming again. Even my irises are trying to come up again. i planted 60 or more tulip bulbs, 50 ore more iris bulbs, and about 60 daffodil for next year. I got the pink and peach center daffodils this time for something different.  Unfortunately I am able to do less and less for shorter periods of time due to my leg. Have been thinking about exploring the issue again, but it is so draining, as you so well know.

Hope this surgery fixes the problem, and the recovery is rapid. Teresa
Title: Re: Open Debridement and Proximal Z-plasty
Post by: MariaT on October 15, 2010, 12:36:28 AM
Hi Pam, I just read your post and wanted to wish you good luck with the surgery. I will check back here to see how your doing :) Hang in there!
Maria
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on October 15, 2010, 01:10:11 AM
Pam:

It seems like you were just saying "a short four weeks," and now it's a "short four days!" Good luck with your surgery!

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on October 16, 2010, 04:24:18 AM
Hi Jill , Teresa, Maria, and Janet

It's been busy this week beginning last weekend. My DH and I took a 3 day vacation to do some fall foliage sightseeing. Then on Tuesday I had a pre anesthesia appointment. This took 4 hours ! First they sent me to pre-admit. Then back over to anesthesia where I got an EKG and vitals. Off to another room to meet with a nurse where I had to give my whole nauseating history. The pharmacist came in before she was done. I had to go over all the meds while this person entered it in computer, Another whole history, then the anesthesiologist came in. Yet another whole history was given. Lots of questions , etc. I was so sick of giving out my history. I need to print out a card stating it so I can hand it out.                                                                                                                                                                                                                                                                       Once this was all done, the nurse came in to finish her part.  I could not believe this took 4 hours !!!

On Thursday I had appointments with PM Shrink and PM Doc. I got 14 injections of spinal marcaine to the neuromas in my knee and a nerve block to the tibia. Doctor didn't want to do a saphenous block because of Monday's surgery. When I was all done there I was off to see the cardiologist. Waited a long time there. Finally got in exam room and waited another 30 min for doc. All this for about a 15 min appt. He gave me his blessing for surgery.

So now it is only 3 days away. Yikes  :o

Teresa-- Your mums are huge !!! I wish mine looked like that. I would love to see your garden. 5 yrs ago I planted 240 tulip bulbs around 4 trees in my front yard. I just planted impatients this year....or rather someone planted them for me. I could not  :'( :'( :'(  I love to garden but didn't get out because of this crappy leg and the extreme heat and humidity this summer.

Tomorrow is DH birthday.. I am making him his favorite cake, Pineapple Upside Down . On Sunday we are going with friends to a fall festival.

Monday I have to be there at 8, with surgery at 9:30. I'm glad it is a little later. I usually have to get there at 5:30am.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Teresa_S on October 17, 2010, 02:46:40 AM
Pam, May this time be the charm.  Lord knows it has been long enough and too many tries already. I am glad you had some time with your husband to relax before worrying about surgery again. All those appointments are only one of the reasons I just live in pain everyday and my activites diminish each year. I have not had my leg checked out for over 3 years. I go to the GP, who tries to help with the pain, but that and needing another knee and two hips plus a cervical spur that makes my hands numb, and another herniated disc in my back are trying to detroy me.

My mums are about three years old and they get bigger every year. I did plant 6 new ones this year  I will see what they do next year, they are all daisy mums in different colors.  I also planted a Japanese red maple that I kept in a large pot all summer plus a bradford pear I got on sale. I have tooooooooooooooooooooooooooooooooooooooo many to take care of right now. I  usually do some decorating all over but this year I put out three or so sets, and turned the solar lights to bronze instead of white and hope that will do. My housework barely gets done.

Hopefully winter will not be so bad this year. And the cold won't keep me looking to keep my leg warm.

I want to wish you the best of luck and really hope this puts an end to the non union and that you are soon feeling better and better. Teresa
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on October 18, 2010, 05:00:11 AM
Hi Teresa

My daughter helped me get the Halloween decorations up this yr. I had no motivation, so it helped to have her energy take over  ;D ;D

9 hours and counting  :o

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: kcknee on October 18, 2010, 05:29:35 AM
Good luck with your surgery tomorrow!! I hope everything heals together stronger this time.

Kristin
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Jill M on October 18, 2010, 01:52:48 PM
Pam,
Sending prayers your way today for a successful surgery to correct the non-union.
Jill
Title: Re: Open Debridement and Proximal Z-plasty
Post by: skibum9 on October 20, 2010, 12:54:25 AM
Hey Pam

Looks like I haven't been paying attention to your thread lately. Usually, I'm pretty good about lurking in the background and following along.

Surgery again yesterday again for the ankle. I have everything crossed for you (well that I can get crossed) and sending good thoughts your way for a speedy recovery. I sure hope the fusion takes this time around.

Sharon
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on October 24, 2010, 03:38:46 PM
Hi All

Just letting you know, I wil post more  more in the future. I've been sick with N AND V, drowsniness . I;m on very strong meds for pain. MY stay was  a very bad

Talk later......if you could see all the mistakes I had to correct hahaha

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Teresa_S on October 26, 2010, 12:14:38 AM
Pam,

Hopefully the meds are also controlling the pain. That, at least, lets you deal with all the rest. I pray things are now resolved, and complete healing will result.  I fell this morning, something was on the floor, and my foot < right good leg, just went sliding right our from under me,and I went down with it bent to the inside,and my left out to the other, the closest I have come to the splits in years. I could not get up without sliding over to furniture to get up. It physically has made me sick, nauseated, and very very cold all day long. every movement is excruitating, and the  medial side is so painful. I got out a cane but really do not want to move it at all. It is really great to not have a"leg to stand on", so to speak now!!

OH well,   I hope you have a relatively easy recovery,and you make a recovery this time. Teresa
Title: Re: Open Debridement and Proximal Z-plasty
Post by: skibum9 on October 28, 2010, 02:58:31 AM
Pam

Hope you are feeling a bit better by now. I don't like to hear about a bad stay at a hospital.

Sharon
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Jill M on November 01, 2010, 06:57:18 PM
Pam,
I hope you are starting to feel better. Sorry to hear about the nausea, vomiting, drowsiness and the bad stay in the hospital.
Keeping you in my thoughts and prayers.
Jill
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on November 03, 2010, 04:26:21 AM
Hi All

Yesterday marked 2 weeks post-op. I had bone grafting from my hip to both joints that were nonunion. The talonavicular joint was plated, 5 large staples were removed from last fusion, he put an implantable bone stimulator that will work 24/7 for many months. This whole surgery took 4 hours. I am feeling better. The nausea and vomiting are a thing of the past....thankfully. This was by far the worst hospital stay I have ever had. The only thing good was the food.....mostly I ate jello, broth, etc. I was not given anything IV except right after surgery in recovery room. The resident said she wanted to only use oral meds. At one point during a discussion between resident and male nurse, I was basically told to think happy thoughts for pain to go away. I was in tears . I said the worst pain will be at the 48-72 hour post-op. I told her I had a high tolerance to pain meds, was in pain management, and had more procedures done this time than the last 2 fusions. I had a bone graft taken from the illiac crest to the left back hip. Let me tell you this, it is very painful and nothing to be treated with just oral meds. I had to ask for meds, then it took 30 min to 1 hour to get them, plus another 45 min for it to barely work causing a rollar coaster affect on pain. I asked if I could have IV push med to bridge the gap. The answer was no. I threw up in front of this nasty resident, during one of the discussions. I had just talked to the patient advocate concerning problem from last time. I thought that was bad until this stay.

Today was first post op visit. My temp cast was removed. The incision looked good. I was very happy to have the staples removed from my foot and my back. I had 27 staples removed from the bone graft site and 20 staples removed from my foot for a total of 47 staples ! I only needed a few steri strips to the foot and back. Because the incision looked good, I was able to have a red fiberglass cast put on. I.m non weight baring for 12 weeks. I did bring up the hospital stay and pain management problems esp with resident. He said he had heard about it and wasn't happy with it and would have a talk. He said didn't I have a problem last time too......I said it was with 1 night nurse. This was with the resident and I had asked to talk to him personally. At this time I could tell I should just back off. I only hope I won't require anymore surgeries there.

I've been sleeping on the family room sofa since I got home. I can't do the 13 steps up to the bedroom. I'm just too weak and my rear is way too painful from the bone graft.

I see OS in 4 weeks

Thanks for all your concern  :)

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: lenorem9 on November 03, 2010, 12:47:08 PM
Thanks for the update Pam.  How awful you went through such a time at the hospital.  I can't even imagine the pain you must have been in.  I'm glad to hear the incision looks good and the permanent cast is on now.  47 staples...WOW!   It must look like Frankenfoot.  Sorry, just trying to make you laugh.  I'm hoping for good fusing this time and no more surgery on that ankle/foot. 

Lenore
Title: Re: Open Debridement and Proximal Z-plasty
Post by: skibum9 on November 04, 2010, 12:29:40 AM
Hi Pam

Been thinking about you, so I'm glad you had a chance to update. I cannot believe they had you on oral meds following the fusion and a bone harvest from the hip. Everyone I have ever talked to that had that said it was the most painful part of the procedure. I sure hope you actually puked on the resident. That kind of pain management (or lack there of) is uncalled for. I would been writing one heck of a letter to the top dog of the hospital about that kind of treatment, especially since you have had issues before at that hospital.

47 staples - WOW, I get a little squirmy thinking about having all those removed. I always request the use of sutures. Call me a whimp.

I hope things are fusing like crazy, well at least where they should be and that you have the energy to make it up the stairs soon to sleep in your own bed. No fun sleeping on the sofa after surgery. I really should have thought out the 2 story house when I was 29, but live and learn 15 years later that a rancher should have been my dream home.

Take care,
Sharon
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Teresa_S on November 05, 2010, 03:27:25 AM
Pam,  Why is it dreadful history seems to repeat itself over and over and over an over?  I had the worse Pain management ever when I was in KC area with my tkr revision. I was even reassured by the anesth. (after spending 5 hours in recovery to try to get pain under control) that I "had meds ordered for any and all pain issues, and that I would not be in pain" When I asked the RN said: You have a pump that is all you get." Next Morning, after practically crying all night in pain, (didn t  even get that da** Ice pack) the AM RN says:" You are a nurse, why did you not get meds last night, it is much easier to keep up with pain than play catch up"  DUHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH   Of course, never did see that idiot anesth. that promised me I WOULD not HAVE PAIN!!!!! I really think people who have not had chronic pain have no idea. the level of medication required to do any good, is astronomical to them, as we have such a tolerance.Besides which that constant meds we take, make us overreact to pain. It is a losing battle without a dedicated caring dr to hold your hand through it. I am so sorry this happened, but it seems to happen more and more often. When I was going to the group down there, all they could talk about were the physical activity programs they were involved in: racquetball, running, etc. and I just wanted to slap them, or trip them, whatever would give them a clue.My new pain mgmt. dr thinks it funny that I HATE the fact that pain controls my life, and that the meds I need are controlled by HIM!!! HE thinks it is funny, I think it is ridiculous.

I do hope this works for you as you certainly have been much more persistent  and accepting than I have. It is a good thing that these terrible times fade into the back  parts of our memories after a while. When I read about Purdue reformulating Oxycontin, and it now has no generic, and fentanyl patches being recalled, and all the other bits of news, I often wonder where I will be in a year. 
Hope time is easing some of the pain, and you feel better. thinking of you teresa
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on November 06, 2010, 01:18:36 PM
Pam:

I sure have been thinking about you. I'm so sorry you had such a rough time with pain...and for no good reason. I just don't understand why doctors don't treat pain more seriously. I wish we could make them feel it for a few hours, then they'd understand. Grrrr! But it's good news that everything looks good for now. Here's sending "fusing" vibes your way!

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on November 06, 2010, 11:30:23 PM
Hi Sharon, Teresa and Janet

Thanks for all the support. I tried to write my hospital experience, all in a nutshell. I never thought I would have a problem with the resident. I never met this person before surgery. It would have been nice to have done that. This is what happens, I guess, when you use a large teaching hospital. I also  found out my OS was gone during 2 of those days. This resident was as cold as ice water. You also never see the residents, once you are back in the clinic, to see the OS.

Teresa--- I was offered the fentanyl patch, but declined. I thought they were discontinued by the FDA. I did not want to use something that has been linked to deaths and bad reactions, esp combined with oxycodone 45mg q2h and oxycontin 20mg bid. It's funny she would offer something like that rather than give me something IV . I feel the IV route is a more precise dosage than guessing around with the patch. She told me I was on the highest dosage of oral meds and that I was on the highest dose of meds than any of the other patients on the unit. I felt like I was talking to brick walls.

The resident also was trying to send me home the day after surgery. The other 2 fusions I was in for 3 days for pain control. This time I had more procedures done, including the illiac crest bone graft. There was no way I could go home. I had to once agin throw out asking resident if she had ever had orthopaedic surgery. She said, no. I said, then you haven't got a clue what having surgery that involves cutting thru bones, bone grafting, plates and screws etc, feels like.

Another problem/joke concerning pain management was finding who controlled what part of the surgery...resident, anesthesia, PM lady who just was interested in smilling and not doing anything. Anesthesia came in the form of 2 groups, first group was concerned with how I felt after anesthesia. If I told them about my pain they would say talk to other anesthesia group. Talked to 2nd anesthesia group , they were only concerned with popliteal nerve block/pump which barely helped out pain. When I told them about pain, they said talk to PM lady....on and on and on. I was staying in a medical circus.

I got a survey in the mail, from the hospital, asking how they performed. Inside it asks how the doctors performed. I will sure let them know how the resident did and the nursing staff and hope I never have surgery there again.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Roma on November 10, 2010, 12:58:44 AM
Hi Pam and Teresa,

Reading your posts on your recent episodes and care (or lack thereof) concerning your stays at the hospital after your surgeries made me think of my sister.  My sister had a tkr about 3 years ago and did very well.  However, she had since moved to Denver and somehow got an infection in her knee.  This all started back in February of this year.  She was either in the hospital or in a rehab center for 9 months.  Her
story is a total night mare which I won't bore you with all the details here.  However, she was also told that she would have NO PAIN after her surgeries because it would be controlled.  When I was there she was literally begging for pain medicine to control the extreme
pain that she had clear up into her hip.  The one thing that I noticed was that there were way too many people involved in her care.  There was a doctor for everything and they all contradicted each other.  It was evident that there was a real lack of communication between all of
them.  My sister had her leg casted after the final surgery and the OS told her that she was not to move the leg or remove the cast for several days.  She had a cadavar tendon put in her knee and he had to hinge her knee (what ever that means).  In about 3 days in walks a
doctor and told her he was removing the cast which he did.  She was very upset, but her OS was out of town so he was not consulted. 
When her OS came back in to see her and saw the cast was off he just hung his head over the railing.  He came back  a few hours later and put it back on.  She was never given ice on her knee after surgery which was a puzzle to me. This is just one of dozens of episodes that went on day after day.  I wish I could share them all and you wouldn't believe it.  She has to be on coumidin because she has an irregular haear beat and when she was in the rehab center the doctor there would not let her take enough coumidin to keep her blood at 2.5 where it was supposed to be and she ended up getting a blood clot even though she tried to tell him that they ALWAYS kept her blood at 2.5.  She had to be rushed to the hospital in an ambulance.  There were a constant stream of people in and out of her room at the hospital, that you never quite knew for sure why they were there.  It has really made me think seriously about having more surgery on my legs, even though I know I will probably not have a choice.  The good news about all of this is that my sister survived and is finally back in her own home.   

Pam,  I truly hope and pray that you are doing better.  No one should ever have to go through all that you have. 

Roma
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Teresa_S on November 11, 2010, 04:35:36 AM
Pam,  the fentanyl patch is a most wonderful method of controlling CHRONIC pain not , post op pain. Initially, it takes up to 3 days to get any benefit and maybe two weeks to get a level control of the pain. NOT post op med. There were some patches recalled as they were asorbing too quicklly, something the people who were using them probabley DID NOT complain about. THe best thing about them is that next to methadone ,they give the most constant relief with no ups and downs, and you do not have to worry about them for three days at a time. 
I am confused why you take only 20 mg oxycontin bid and 45 mg of oxycodone (equivalent of 9 percocet) every two hours. That does not make sense to me. Many people take 120mg BID of oxycontin, and it is a much more constant control of pain than a short term med like oxycodone every couple of hours. I took the methadone for awhile, and had the best pain relief I have ever had, but IT DID NOTHING FOR postsurgical pain.  The two are two very separate types of pain, and require different meds.

Roma,  What is so terrible about these hospital experiences, is that they happen EVERYWHERE and EVERYDAY, to so many people. The number of people who can relate a similar experience makes me lose faith in our medical system. IT should not happen to any of us, and the fact that is happens so often is unacceptable.  Too many doctors is one reason. I had a surgeon, who did come by everyday BEFORE 5am, and then was told that the hospitalist was actually my medical management dr. I woke up the first night to thisguy standing by my bed, and he said I am Dr. so and so, you will see me everyday , and I NEVER saw him again.  My IV blew and I had no IV PCA, and so they paged anesthesia to come start it, and he came int and looked around on both arms, and then put on the call light, when they answered, he told them he needed help with the IV, as if as a RN< I neverr started 1000s without anyone else to tape them. but nobody came so eh called again, and noody came so he started it, and it blew before he left the room, and he just left it. I cried fro meds too that first night, and was sent home less than 30 hours later with 30 percocet.

Good luck on a better recovery this time Pam      Teresa
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Jill M on November 11, 2010, 02:44:32 PM
Pam,
Sorry I haven't been on here for awhile. I am so sorry to hear about your post op experience with pain. I really hope that your ortho speaks with the resident that cared for you.
I am glad that you got the survey in the mail and are able to give them feedback. Most hospitals- if they are concerned about patient satisfaction will take a look the ones that are really bad to see if there is an area for improvement. I hope this is the case for the hospital that you had surgery at. No one should have to have such an awful experience.
I hope you are on the road to recovery. Keeping you in my thoughts and prayers.
Jill
Title: Re: Open Debridement and Proximal Z-plasty
Post by: starpolisher on November 11, 2010, 04:16:34 PM
The pain is what makes this AF condition so very difficult to live with!  As previously noted I had a double TKR and then a smaller spacer put in left knee, scar tissue removed from that knee at the same time and MUA in right knee.  This second operation was done at different hospital by different surgeon.  As my PT progressed, my pain and AF worsened, was tested and told I was highly sensitive to cement and had a revision 5 months apart on both knees and all the scar tissue removed.  The PT was felt as if I were being tortured.  I have been on morphine now for approx. 3 years.  I have lessened my dosage but I take generic MS Contin, 60 mg every 8 hours though I often go 10 or 11 hours.  I also have a script for hydromorphone, 8 mg, max 5 a day and usually take 4 a day.  As someone said, the only time I don't have pain is if I'm lying in bed with pillow between both legs!  My PT helps and Icing gives me great relief (use a cryocuff) as well as the "elite seat."  I want to get off the morphine entirely, but I wouldn't be able to bear the pain!  I reallly know nothing about the patch.  Perhaps I should email my old pain mgt. doctor in NY (he was so kind) as my pain doctor here just prescribes what he he did.  I feel as if I will be on pain meds forever and hate the thought!  So tired, slow, can't drive more than a few miles locally......I am only 62. 

What pain meds do others take?  I am stunned when I read some people just take over the counter meds!  How can you live with the pain?  Is it because I have AF in both knees and my revisions are the long implants?  I do go out and I do cleaning at home, but I pay such a price afterwards.  Should I ask about that patch?  Appreciate anyone with experiences re controlling pain for AF.
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Teresa_S on November 14, 2010, 09:21:59 AM
Hi, the med with the longest half life is Methadone, many do not like the stigma associated with this med, but with the long half life, it gives the most even sustained coverage.  You can also take the entire day dosage before bedtime, and get coverage for the whole day not having to take it every 8 to 12 hours. Another med that lasts is the fentanyl patch. It is supposed=to be changed every 3 days, but some need to change every two days.  It is available in generic form.  Oxycontin has recently been reformulated by Purdue, and is no longer available iin a generic form, unless the pharmacy still has some left. That means the cost is prohibitive.  That is the problem with so many of the new meds. MS CONTIN is available gnerically, and therefore cheap. BUT methadone is the cheapest pain med ever. All have their own side effects, and people respond differently to each. You have to work it out, and try them GOOD LUCK Teresa

For starpolisher.
Title: Re: Open Debridement and Proximal Z-plasty
Post by: starpolisher on November 16, 2010, 08:53:03 AM
Thank you for the pain med info, Teresa!  I will talk it over with my pain doc.  My psychiatrist feels I should start using a wheel chair just so I can get out more and see and do more.  I am depressed....it's getting harder the longer I have AF.  I noticed almost immediately that morphine does make me feel depressed and it also makes me overly warm (and I never was a person who liked hot weather).  I do a lot of therapy just to be able to walk on a limited basis and I am very faithful about it. 
If I didn't do it, I believe I wouldn't be able to walk.  I feel as if I have so much scar tissue!  I did send an email to Dr. Millette for advice and he was so kind to respond immediately and said to send him a copy of my x-rays and will be more than happy to look at them and see if he can give me some advice.  I was impressed with his quick response.  I am so afraid of losing the ability to walk altogether! 
Dr. Shelbourne's pt has helped me more than any other type I have had, but still very limited. 
Does anyone feel that they continue to make scar tissue several years after surgery?  I don't know what to think  Maybe I am just so weary from the operations and the pain, etc. 
Teresea, I will talk about pain info with my pain mgt. doctor.  Thank you so much for your input.
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Teresa_S on November 17, 2010, 05:29:04 AM
Hi you are welcome about the info. IF you start methadone, it takes at least 3 days to feel relief, you have to start at 10 mg once or twice a day. If you start  with only 10 mg, split it to 5 mg am and pm, after 4 or 5 days, if not adequate pain relief, go to 10 mg at night and 5 mg in am. In a week if still need more use 10 mg am and 10 mg night. After a few weeks, (2 or so ) you can take the whole 20 mg at night if  you prefer. Good luck T
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on November 17, 2010, 07:15:45 PM
Hi All

Teresa--   I think maybe the reason I have not been put on those meds is because my pain is nerve pain. You can throw all the narcotics you can and still not get relief. I am on so many other med for the nerve pain, that they have to make sure what narcotics and amounts they prescribe are balanced with all the other meds.

Last Friday was appointments with PM shrink and PM doc. I really needed the visit with the shrink after this surgery. All of this stirs up the reason for all of this in the first place , which is my first OS's negligent care leading to a medical malpractice lawsuit.

This visit with PM doc was my monthly injections and nerve blocks. There were 14 of them. My PM doc said they will be able to acquire the cryo-ablation machine around Dec 9th or 10th. He asked if I was still interested in trying this method of freezing the neuromas. This cryo ablation method can last anywhere from a couple months ,up to a year. I said I was still interested. I wanted to try this before going thru another surgery in Baltimore, with Dr Dellon.

This cryo ablation procedure will be done with light sedation. It is painful but I will need to be able to communicate with the Dr while he is doing it. It will involve sticking a cannula in each neuroma, then having a probe inserted to locate the neuroma and stimulate it which = extreme pain. Once this is done that probe is removed, then the cryo ablation probe is inserted so the neuroma can be frozen into an ice ball. The neuroma does not stay as an ice ball for long, It will thaw during this procedure. This will cause the neuroma to be dead anywhere from a couple months up to a year in some cases. There was a KG ,on another thread, in a different section, who had this done in NY. She said it was the most painful thing she had ever done.  After reading this , I didn't feel very excited to go thru this procedure. I thanked this person for their candor. I would rather hear from another patient going thru the procedure, than having a Dr , who has never experienced it, tell me I might feel a little pain.

So sometime around Dec 9-10, I will be having the cryo-ablation method done, to the many neuromas of my left knee.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Jill M on November 18, 2010, 12:46:43 PM
Pam,
I admire your strength and determination. You have been through so much. I hate that you have to go through such a painful procedure but I hope that you will gain some relief from the freezing.
I am glad that you have a good shrink. You need that when you are facing all of the complex issues. I need one and I don't even have a 1/4 of what you have going on.
Keep us posted on your cryo-ablation and the progress of your foot healing.

Jill
Title: Re: Open Debridement and Proximal Z-plasty
Post by: starpolisher on November 19, 2010, 05:09:40 AM
Wow Pam, I really admire your courage!  I am awed that you are going to do this but then when I think of all the operations I've had, hoping that "this is it!"......well I am worn out now.  Whatever is done, I don't think I could take it unless I felt it would really help and last for quite some time.  You are brave!  I see my OS in a few weeks and am going to try a scooter to get around and not aggravate my knees so much.  Hoping less pressure on my knees will make it possible for less pain meds.  Also I have to get out more....getting too depressed.  I will be sending my x-rays to Dr. Peter Millett tomorrow and he said he would like to see them and see if he could offer some advice.  What a nice doctor to answer me so quickly and with compassion....it was very evident he wanted to try to help.  I keep hoping a famous orthopedic surgeon willl either get AF or a family member get it and know how serious and painful it is and devote their time looking for answers/doing research.  God bless you, Pam, and best of luck.  I do look forward to hearing the outcome. 
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on November 19, 2010, 07:30:42 PM
Pam:

I can't imagine "looking forward" to a procedure that will be so painful...let's hope it gives you relief! I wholeheartedly agree that you are very courageous! Here's wishing you the best.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Teresa_S on November 23, 2010, 06:20:25 AM
Pam,  I understand the ablation , and hope that the "light sedation"is not so light. Make sure it is not versed, as all it is is a hypnotic that causes you to forget what happened, but during the time it happens, you can be completely out of control, not knowing it. I do understand the nerve pain issues, and am glad you have a PM to address that, as the GP I am forced to use, really has no clue. At this point, I can only feel numb pain in my feet, ALL THE TIME,and my knee and thgh are about 4 times the size of normal. After my fall, andtearing the MCL in my rght knee, I can barely walk in the am when I get out of bed. I do not like oxycontin, and feel it has little pain control, and barely lasts me 6 hours let alone 12 hours. Eating short term narcotics, is eating my stomach. I have an appt on Wed morning and guess I must decide to make a fuss and get something new in place, or just struggle along for awhile.  My insurance is changing the way it pays for brand name meds in January, and I will refuse to pay that for the oxy so he will have to change them to something. I did not like many of those you are taking, as I slept all the time. Right now my BP is out of control, due to the uncontrolled pain and the Dr keeps saying he hopes I do not have a stroke. Have a happy Thanksgiving, will be thinking of you Teresa
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on November 25, 2010, 07:45:51 PM
Hi All

I just want to wish all my friends a very safe and happy Thanksgiving.   ;D

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on December 03, 2010, 01:13:21 AM
Hi All

I hope everyone had a wonderful Thanksgiving with their families. I had everyone over , but gave in to having both DIL's bring some of the food. One brought over a delicious cranberry dish and a sweet potato casserole that tasted like pumpkin pie without the crust. Other DIL brought the green bean casserole , deviled eggs, and apple pie. I made pumpkin pie and pecan pie. I finally made a pecan pie that was not runny !!! It has taken several modifications to get there.

Today was my 6 week post-op appt with the ankle OS. I got my red cast cut off, then xrayed. The xrays show part of my distal tibia besides the foot and ankle. There is a whole lot of hardware in that xray. I have a 6 inch plate and 8 screws in tibia plus 3 large screws, plate and screws and the bone stimulator in the ankle /foot. There is a large area that is whitish , that is from all the bone grafting. So far things are looking OK, but still very cautious. My OS is taking the scar tissue causing nonunions seriously given my AF history. After all these are joints he is working with. I was trying to take pics of the xrays with my phone. My OS came back in to get something, saw what I was doing and said he would take the pics for me. He did a good job...lol.  Anyway, I was put back in a cast, nice hot pink, for another 6 weeks. I can start to bear increments of weight as tolerated over the next 6 weeks.

Next week will find out if PM doc has acquired the cryoablation machine for my nerve pain.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Jill M on December 03, 2010, 04:13:26 PM
Pam,
Glad you had great Thanksgiving! Sounds like you got some promising new from the OS! That is a lot of hardware- can we call you Robo Pam now?
Sounds like your OS is on top of things. Praying that things will continue to heal. Thanks for the update.

Jill
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on December 05, 2010, 04:16:27 AM
Hi All

Got a call Friday from pain management about the cryo-ablation. I am scheduled to have that done on January 6th. DH will need to be there since I will be sedated for this procedure. Starting the New Year off with a bang. Since this procedure is pushed back to January, I'll be having another round of injections and blocks on Dec 14th.

Thank you Jill for your prayers. A person can never have enough of those.  ;D

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Teresa_S on December 07, 2010, 10:51:33 PM
Pam,  Hope this is the answer, and it would be a wonderful way to start the New Year, that is for sure. Hope all continues to go cautiously optimisticly for you. Whitney and I went to Oak Park Malll, and a few places on Sat. Checked out the New American Girl Store. think I might take Chandler after she turns 4.  She really isn't into the dolls too much right now. We left Kv at 6 am and got home Sun am at 2 or so. LONG day. My legs certainly told me about it all day Sunday.  We did Thanksgiving at Whits She roasted the turkey, made noodles, potatoes, stuffing, and I made the Ham , scalloped potatoes, vegs, desserts, etc. Turnd out great, Lauren 17 yr old, and her boyfriend made 6 pies. Am heading to Iowa City to shop a little more on Thursday. It really wears me out anymore. Hope you have a wonderful holiday season. Teresa
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on December 17, 2010, 05:52:46 AM
Hi Teresa

You Thanksgiving feast sounded very good. I'm glad you had all your family with you. You certainly did a lot of shopping. I just got out 2 days ago to do some evening shopping. My daughter works at Oak Park Mall. I have 9 adults and 8 grandchildren to buy for.

Two days ago ,was another visit to pain management. I had a very bad weekend because of my pharmacy. I had called in a refill on my neurontin ( for nerve pain) on last wednesday. It needed a Drs OK for refill. I checked in on Thursday, Pharmacy said no word yet. I called Friday and getting frantic . I explained I took my last pill Thursday and would go thru with drawl . I asked for pills to get me thru weekend so I wouldn't go thru withdrawal. They said no .No care about the withdrawal. I went thru a horrible withdrawal of extreme sweating til soaked, then chills, sick to my stomach and headache, palpitations. Theses sweating episode were done many times day and night. No sleep. Monday I found out when I called Pain management doc, they never received a fax for renewal. they gave me their fax # to tell pharmacy. It turns out pharmacy was calling Sprint. I live about a mile from sprint world headquarters.  

When I saw PM doc on Tuesday and told him what I went thru. He said that was terrible. He said I could have had a seizure and even died coming off neurontin cold turkey. He said if it happens again to call the hospital and ask to page the anesthesiologist on call. I never want to go thru that again.

I've taken advantage of my nerve blocks to hit the shopping pretty hard. Not much time left !!!

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Jill M on December 17, 2010, 03:57:52 PM
Pam,
So sorry to hear about the issues getting your Neurontin prescription refilled. I hate that you had to feel so bad. You PM doctor is right, you could have had some major issues with not having the medication in your system.  I can't beleive that they Pharmacy wouldn't give you a few pills to get by on. It's not like they were giving you a controlled substance. Sounds likle you have an alternative option to call if it ever happens again. Lets just pray that it never happens again.
Hope you get all of your shopping done while the nerve block is working! Wishing you a Merry Chirstmas and Happy New Year.

Jill
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on December 17, 2010, 05:34:05 PM
Hi Jill

Thank you so much. That is one experience I do not wish to repeat !

Today I got a call from pain management. My PM doc wants me to come back in to be injected before the cryo ablation. He wants me to try and pick out the worst neuromas and mark. It will be hard to designate the worst ones. To me, they are all bad   :o  Next week on the 22nd, I go back in to be injected.

Jill, I want to wish you a very merry Christmas, a Happy New Year and Happy New Knee  ;D

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Teresa_S on December 22, 2010, 02:30:29 AM
Pam, love that phrase, which is the worst", as it is so difficult when you are the one with the pain, to rank them. My shopping is basically finished, after multiple trips, but the wrapping of so many awaits. I always plan to do it over time, but now three days is about it. A friend that goes to Ia City for pain management, almost always ends up in tears. They have her on a total of 30 mg of methadone daily, and refuse to give her any breakthrough meds. When she was begging, the dr orderd FOUR vicodin, a WEEk, I think I would have walked out. They belittle her for having pain, that is not satisfied by epidurals, and interventional  procedures. They told her if she was willing to go off the methadone then she could have a couple of vicodin a day!!!. THIS IS A pain management specialist who does not care about pain, just how many procedures they can do. I looked at her and asked her if she had any idea what would happen if L (my friend_ quite methadone cold turkey, She would have a heart attack, at best, and yet she could take one vicodin. WHY do people like this DR become pain management drs?  I am glad you have some that seem to care. L cries after every appt.  She lets the do injection after inection, and all kinds of procedures to keep getting her meds. SHE is actually on low dose, and they keep talking like she is at the top.

Have a wonderful Christmas, and may the new year bring you pain controlled, if not free, days. Merry Christmas Teresa
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on December 23, 2010, 07:07:25 PM
Hi Teresa

Wow, your friend has a horrible PM doc. Has she thought of leaving this doc or is this the only one around to see. I feel very lucky with my pain management doctor. He spends a lot of time, listens and respects my input and knowledge. He is always thinking on what to do to help me. I never have had a problem getting meds. The nurses and desk people are great too. My first PM doc was worthless , so I changed and glad I did.

Yesterday was my visit with PM doc for injections before the cryoablation. It was very hard to pick out the worst neuromas. I ended up marking 8. Usually I mark 14. This really stirred up the pain in the nerves because you have to push down to locate the neuroma. They feel like little BB's up to the size of a pea. PM doc felt around and we picked 4 out of the 8. Some of these neuromas are coming from the sciatic nerve that wraps around from the back of the knee, to the side and front. He wanted the deepest neuromas instead of the superficial ones. Doing cryo on a superficial nerve can risk causing tissue damage from freezing the nerve. He proceeded to create a sterile field, then injected the 4 neuromas. It really hurts when the needle hits the neuroma. When I got home, my knee, thigh, and lower leg were aching and the other neuromas were very painful with lots of zinging electrical pain. OUCH ! This lasted all day and night. Today, it has calmed down some.

Today starts preparations for Christmas eve dinner. I roast a turkey. Today is also pie making, and cranberry sauce making. Everyone will be over with 8 grandchildren running around with Christmas excitement !  I have help wrapping gifts from my daughters and DILs. We are done shopping......thankfully.

I want to wish all my KGs a safe and very Merry Christmas !

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Jill M on December 24, 2010, 02:18:28 PM
Pam,
So sorry to hear about your painful injections just before the holiday. Hopefully the pain will continue to subside so you can enjoy Christmas with your family.

Wishing all my KGs a Merry Christmas and Happy New Year.

Jill
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on January 06, 2011, 01:37:04 AM
Hi All

First of all, Happy New Years to everyone !!

Tomorrow, I go to have cryo-ablation done, to the many neuromas of my knee. Today was an appt with my PM shrink. One of the things we discussed was the procedure tomorrow. He gave me some breathing exercises to do to combat some nerves. You would think since I've had 18 surgeries I would not be nervous, BUT, I am a little nervous, since I am going into unchartered territory. There was one other KG who had it done. Her report wasn't too comforting. I need to give this a try before I have to resort to going back to Baltimore to see Dr Dellon, for more nerve surgery. I know he preferred I not do it because he felt the buried nerve ends had come out from being embedded in the muscle. I feel like I should give it a try at least.

I have to be there at 7am and will be there for many hours. They have me booked for a 2 hour procedure, but will have to stay there longer to see if other neuromas need ablating. I will be somewhat sedated for the procedure. I have to be awake enough to give my PM doc some input during the procedure.  :o

I'll post all about it when I can.....in the mean time, wish me luck !

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: kcknee on January 06, 2011, 02:15:25 AM
Good luck tomorrow. I hope it doesn't turn out to be as painful as it sounds.

Just keep thinking to yourself that the pain from the procedure will only last a short time and will be worth it if it gives you pain relief for months to a year.

I'll be thinking of you tomorrow and hoping that all goes well.

Kristin
Title: Re: Open Debridement and Proximal Z-plasty
Post by: skibum9 on January 06, 2011, 03:00:32 AM
Best of luck tomorrow. I will send good thoughts your way all day.

Sharon
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on January 07, 2011, 04:25:55 AM
Hi All

Thank you Kristin and Sharon for all the good luck wishes. I really appreciated taking all that Good Luck in with me today, for my surgery.  ;D I did not get much sleep last night.

Well, I survived my surgery ( as it truly was) from Mr Freeze !  I got there at 7am and got into a gown. I was was actually prepped for surgery. Then it was time to start the IV. I have always been hard to start IV's on, but today was really bad. It took 6 tries to get it. Four of those tries was from my anesthesiologist PM doc ! That took a long time because the doc was doing a cryo on the first patient. Later I was told she had only one spot done. Finally the IV was started, then came the vancomycin. This took almost an hour to run in and extra time for it to circulate around, to protect the knee replacement from infection. I didn't know this was going to be done because I also took precautions, by taking the pre-med I take, for dental work and other procedures. I take Keflex for that, so I think I was pretty well covered as far as antibiotics go. lol  They finally wheeled me in at 9am. The cryo rep was there to observe and help the nurse do all the settings for the probe and the sensory/motor nerve tests. Everyone was all decked out for full fledge surgery. After all the surgical draping, blood pressure cuff, betadine applied to my knee and putting a "grounding plate" under my other thigh, the cryo proceeded.

I had pre-marked all the neuroma spots. There were 15 of them. First the doc pressed down to locate the neuroma. I told him when he located the eaxct spot. Once that was done, he gave me a local anesthetic to that spot. Then he stuck the probe in. This probe looks like and is the size of an ice pick. No kidding ! This probe/pick is then moved around till he hit the neuroma . This equals pain, which equaled getting IV Fentanyl . Then the nurse sets the machine to do a sensory test by stimulating the nerve. This equals pain. Then there is a motor test to make sure there is no motor movement anywhere even down to the foot and toes. Once that comes back negative the cryo-ablation is done. A catheter is inserted thru the probe to freeze the nerve into an ice ball. Nitrous Oxide is used to provide the freezing. It takes 1-2 min ( or a little longer) for this freezing to be done. Then the freezing is turned off for a thawing period of about 1-2 minutes. Then a second round of freezing into an ice ball is done. This method freezes the water in the nerve to kill it, without damaging the nerve sheaf. Then the probe is removed and on to the next neuroma. This was done to the first 14 neuromas. Some were more painful than others. Those that were more painful required another round of IV fentanyl. The last one shot a deep ache up the femoral nerve that lasted a long time. The best was saved for last.....the biggie. The saphenous nerve up in the thigh. There is an area just below, one of the incisions from Dr Dellon's surgery, that is very painful. It is also quite deep. This required a larger probe and catheter. After locating the spot, local anesthetic was injected and this larger probe/ice pick was stuck into my thigh. this was more painful than the others, but the worst part was when it was stimulated. That one required more fentanyl and also adding Versed. During the procedure, I was awake enough to provide directions to neuroma locations and state quality of pain, pain relief and information when the nerves were stimulated. I also asked questions as they came up. The whole surgery took every bit of 2 hours. Afterward layers of dressings were applied, finished off with an ace wrap pressure dressing. This stays on for 48 hours. I am also supposed to use my ice machine during this time and limit activity. Pain management will have this cryo unit till Jan 18th. I am supposed to call them with a report next Wednesday and see them next Friday. They have reserved time to perform another cryo-ablation at that time, if I have any nerve pain. He did say that there was a low percentage that this would have an affect to the nerve pain down further in the leg,ankle and foot since that pain could possibly be phantom pain or from a deeper nerve branch.

Now that it is evening, all the numbing has worn off. So far it's throbbing pretty good and swollen. I do still have nerve pain down the lower leg and ankle. but so far no nerve pain in the knee, just somatic pain....so far.  I'm glad I have the polar care ice machine. This was certainly worth a try and won't cause any problems if I should require any further surgery with Dr Dellon or implanting a spinal cord stimulator, in the future.

Time will tell

Pam

Title: Re: Open Debridement and Proximal Z-plasty
Post by: kcknee on January 07, 2011, 05:00:26 AM
I'm glad to hear that your surgery went well. It definitely does not sound like a fun two hours to go through, but hopefully it will provide long lasting pain relief so it will be worth it.  I thought the EMG/NCS needles and the muscle compartment pressure test needle seemed bad, but they are nothing compared to what you just went through.

I'm sure you'll sleep well tonight now that the surgery is behind you and you have promising results.

Kristin
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Jill M on January 07, 2011, 03:06:52 PM
Pam,
I had you in my thoughts. I knew you procedure was this week. I am so glad that it went off without at hitch. I know that it must have been very painful but it sounds like the team caring for you did a great job. I hope that you get some relief with the procedure.
In the meantime I hope you are taking it easy and realaxing with your polar ice machine!
Keep us posted.

Jill
Title: Re: Open Debridement and Proximal Z-plasty
Post by: skibum9 on January 08, 2011, 12:28:47 AM
Hi Pam

Glad things seemed to have went well. I think you need to add a little more emotion when you describe your experience. When you say "this equals pain", I assume you mean to say this "hurt like wholly heck fire". When I stub my toe that equals pain, what you went through I can't even imagine.

Hope you have a speedy recovery.

Sharon
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on January 08, 2011, 02:30:21 AM
Hi Kristin, Jill and Sharon

Thank you so much. Kristin... Yes, the probe was bigger than an EMG needle !  Jill....I have a wonderful PM doc. He was very caring during the procedure. They were very quick to add pain med when I needed it.

Sharon..haha, you said it best !  I was trying to not scare any future cryo patients. Kidding aside, It did hurt like wholly heck fire .... :o

Today was spent in the ice machine. Last night it hurt most the night causing me to not get much sleep. Today was a little better, but I did feel a few spots of burning. It always originates in the crease of the knee. I'm very tender to touch so right now it is hard to tell if this helped. I will be removing the dressing tomorrow.  I need to give more time to assess.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Jill M on January 12, 2011, 02:26:18 PM
Pam,

How are you feeling this week after your procedure? I hope you are experiencing some relief. I can only imagine how painful the procedure was for you. I am glad that you have such a good PM doctor.

Jill
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on January 13, 2011, 02:04:18 AM
Hi Jill

Thank you for asking  ;D  So far, 5 days later, I've been experiencing full nerve pain down the lower leg, ankle and across top of foot. The PM doc did not think that pain would be affected by the cryo. On the knee , I've been having some nerve zingers,burning and throbbing. I am able to now feel the neuroma areas to mark. On Friday I got back to have more cryo done to hopefully freeze the knee up. I can't believe I am having this done again  :o

Tomorrow I see my ankle OS. I will be getting my hard cast cut off, after 12 weeks. I was starting to feel closterphobic lately with it on. I will be going back into the boot cast, but at least I can shower without wrapping it up and putting a cast cover on,  :P I'll be able to sleep without anything too! I'm thinking he might send me off to get a CT scan to see how the fusion has progressed. Hopefully no nonunion happening.

It's a busy 2 days coming up

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: kcknee on January 13, 2011, 04:30:45 AM
Good luck over the next few days. I hope you get some good news on your ankle tomorrow and that it is healing better this time.  Do you have to get as many spots treated on Friday? Hopefully not as many neuromas need to be frozen (or refrozen?) so the time and pain won't be as bad as last time.

My compartment pressure test needle may have rivaled the cryo needle in size, but he was only aiming for the 4 muscle compartments and not an inflamed nerve and he gave me shots of lidocaine first to numb the surface and even used numbing spray before the lidocaine shots. The worst it ever felt when it went into the deep muscle compartment was comparable to the pain from getting an IV put in by someone not that experienced. Luckily the pressure was high enough at rest that I never had to do the usual 2nd round of testing after using the treadmill.

Kristin

Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on January 17, 2011, 06:12:49 AM
Hi All

I thought I would update from my last post.

Thursday I saw my ankle OS. My cast was cut off. Boy did that feel good to have that off. I had another set of xrays taken. From the look of things according to my OS, my ankle still appears to be healing ok. I have to wear the boot cast now. I see him again in 8 weeks. I will be getting a CT scan the dat before. This is usually the gold standard test to make sure there is no nonunion. I can try to wean to a shoe closer to the 8 week mark. I have absolutely no calf muscle from being in a cast 12 weeks.

Friday , was another round of cryo-ablation. This time it took only one stick by the PM doc to get the IV in. I had another round of vancomycin run in before the surgery. I had marked another 10 spots that elicited nerve pain. This time there were some spots treated that were almost unbearably painful. They told me they had
to give me a large amount of Fentanyl for pain during the procedure this time. So far, 48 hours after the procedure, I have not had any nerve pain in the knee. They told me we need to see how things go for 6 weeks to get a true picture if this will help the knee. I specify the knee because it does not affect the nerve pain to the lower leg, ankle and foot. According to my PM doc, I will probably have that for the rest of my life since he feels it is deaferentation pain. He said that is where the spinal cord stimulator would help. I'm not ready to accept that til I see Dr Dellon

I hope this last cryo ablation got some of the deeper nerves since it was more painful. So far it's 48 hours and counting  without nerve pain in the knee. I welcome that any day

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Jill M on January 17, 2011, 04:45:15 PM
Pam,
I am glad to hear the good news about the ankle! I can only imagine how good it must feel to be free of that cast!

So sorry that the cyro-ablation was unbearable this go around but it sounds like you have had some promising results with the nerve pain in the knee! Praying that you don't have to have anymore cryo procedures.

Keep us posted.

Jill
Title: Re: Open Debridement and Proximal Z-plasty
Post by: kcknee on January 19, 2011, 11:30:44 PM
It sounds like you had 2 good appointments last week. I hope the CAT scan will show that your ankle has finally healed and I am very glad the the latest round of cryo-ablation is over for you. It sounds like it was horrible. It is great that it does seem to have such long lasting positive results.

Kristin
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on January 20, 2011, 02:06:10 AM
Hi Kristin and Jill

First, good luck Jill on your surgery tomorrow  ;D

Thanks Ladies for the replies. It is now day 5 post-op from my cryo treatment. So far it seems to be going well. I've had some throbbing , but right now, I think it is still from the trauma of the cryo-ablation. The only other thing is a few random needle sticks, nothing organized.

So 5 days with no nerve pain in the knee is heaven !  I hope it stays this way

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Jill M on January 24, 2011, 08:51:44 PM
Pam,
Is the knee still feeling pretty good since the last cyro-ablation??

Jill
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on January 24, 2011, 09:44:24 PM
Pam:

I'm not around much anymore, but I do think of you! So glad to hear you've had some pain relief, and it's great that you finally have the hard cast off. That sounds like progress to me!

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on January 25, 2011, 03:38:55 AM
Hi Ladies  ;D

Janet, I miss you  :'(  Hope you are off doing fun things with a knee that doesn't cause you trouble, anymore !

Thanks for asking about progress. I am now at day 10 post-op, from the second cryo-ablation. As a matter of fact, my PM nurse called today, to see how I was doing. I'm happy to report that the knee is still doing well. I still have some random needle sticks and maybe a fleeting zinger, but nothing concerning right now. I still have the pain down the leg. I am grateful for each day my knee is not burning,throbbing, constant needle sticks and intense zingers.

One day at a time , is a good goal

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Jill M on January 25, 2011, 02:52:19 PM
Pam,
I am glad to hear that they cryo-ablation is controlling the awful knee pain! I can't even imagine how good it must feel for you!

Jill
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on January 26, 2011, 09:51:13 PM
Pam:

My knee is great! It gets a little achy sometimes, but mostly I don't even think about it. The plantar fasciitis on that foot is driving me crazy. I do everything right, and it keeps coming back. I'm about ready for another cortisone shot. I am enjoying doing Wii exercises that I couldn't do last year at this time without my knee protesting! It feels good to have some activity, and the Wii is fun. Now if my foot would just cooperate!

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Jill M on January 27, 2011, 12:28:16 AM
Janet,
Sorry to hear about the plantar fasciitis. I have had my left foot injected twice in the last year while waiting for my TKR. So glad you hear you are able to do some Wii exercising.
There is a new procedure that podiatrists are using for plantar faciitis that is more chronic- the use blood that is drawn off the patient and the platelets are spun off the blood. This is then injected into the area. Here is a link to an article regarding this treatment.
http://www.podiatrytoday.com/platelet-rich-plasma-can-it-have-an-impact-for-tendinosis-and-plantar-fasciosis  (http://www.podiatrytoday.com/platelet-rich-plasma-can-it-have-an-impact-for-tendinosis-and-plantar-fasciosis)

Jill
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on January 27, 2011, 06:49:33 PM
Hi Janet and Jill

Plantar fasciitis is so painful !!

I developed plantar fasciitis 2 weeks post op from knee surgery in April 2008. I saw ankle OS and was diagnosed with a ruptured plantar fascia. During the next 8 mos, I tried a prescription shoe insert and then a custom made insert and finally, an AFO brace. They took measurements of my foot with a laser to make it to make the last 2 orthotics.. None of those helped. I noticed my foot was beginning to roll inward and developed pain in the ankle. When I saw ankle OS I told him about it. My plantar fasciitis had progressed to posterior tibial tendon insufficiency aka PTTI. It had progressed so far, I needed to have an ankle fusion. That's my story of plantar fasciitis.

I was a little intrigued about the story of people developing tendon problems after taking the antibiotic, Cipro. I had recently taken Cipro, on 2 different occasions, during the last 4 mos, before that April surgery. Google: Cipro Tendon Side Effects

I wonder if either of you had taken Cipro and noticed this occurrence ?

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Jill M on January 27, 2011, 10:43:03 PM
Pam,
I had no idea that is what your ankle fusion stemmed from. How awful!
I had not taken any Cipro in relation to my plantar faciiatis development. Lucily I have responded to the steriod injections, NSAID's, and a stretching sock (Strossburg sock). I just had another injection in December. I believe mine is related to my altered gait- putting most of my weight on my left side as a result of the flexion contracture on the right.
We will have to wait and see if it rares it's ugly head again after my recovery. I am praying that mine will subside with an improved gait.

Jill
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on February 01, 2011, 02:16:31 AM
Pam:  I have never taken Cipro.

Jill: Thanks for the link. I'm going to read it thoroughly and ask my podiatrist about it. (BTW, I really like my podiatrist and she is well-respected.)

My plantar fasciitis was caused by a collapsed arch, which in turn was caused by ten years of altered gait. It didn't start hurting until I started walking with a normal gait! Since the arch will never "uncollapse," I will have to deal with it for the rest of my life, trying to keep it in check as much as possible. I have a prescription for a night splint, which is the next thing I will try. I do best at work when I wear a small heel.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Jill M on February 01, 2011, 10:37:30 PM
Janet,
It's amazing how much an altered gait affects other parts of our bodies. I hope that you are able to keep you plantar faciitis in check with the injections and splint.
I also do well not wearing much of a heel when I am working. A heel seems to aggraviate mine.

Jill
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on February 02, 2011, 01:12:57 AM
Hi All


Help Snow.... :o......SNOW ....... :o......SNOW..... :o....SNOW...... :o.....SNOW..... :o....SNOW..... :o......SNOW....... :o......SNOW....... :o.......SNOW........

In the middle of  blizzard today  :o

Well, I am now 18 days post-op from my 2nd cryo ablation treatment.  I still mostly enjoy a decrease in nerve pain to the knee. I've had more needle sticks happening. The area that always comes back first, is trying to make a comeback. It is throbbing more and becoming more sensitive to touch. I hope it doesn't go beyond that. Otherwise:

One day at a time

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Jill M on February 02, 2011, 02:00:22 AM
Pam,
I am glad to hear that you are still have a decrease in your knee nerve pain. I hope the pain doesn't make a comeback! Sending prayers your way!
Stay warm and safe in the snow! We are getting duplicate weather here in Michigan!
Jill
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Teresa_S on February 07, 2011, 04:05:31 PM
Pam, I am not around here much anymore, so was reading about your ablations.  The PM who did mine had done the test dosing with the lidocaine to see if any relief would be accomplished, which is misleading, as lidocaine numbs it, and then you do not feel it. The ablation was done for nerve root, not neuromas, so I was face down on the table, and then he numbed the appropriate place for the probes, and they did the test procedures (you called sensory and  motor) I was to feel different patterns of stimulation, whcih I did on the first and when I felt the appropriate sensation, they moved on, and then after the second test, they did the part where it takes about 1-2 mins, which is supposed to destroy the nerve for awhile. The second place, evidently was not numb, as the probe was inserted and touched the nerve root, I jumped(involuntarily) to the ceiling, and apologized, but he was shocked, and he apologized over and over saying he did not mean to hurt me. I was afraid that jumping had done some damage, but it was just insertion at this point The second time I never did get to the pusation point I was supposed to feel, but he went ahead anyway. I was not given any other meds, and due to the two spots only on the back, only had a couple of bandaids.  They did not work. when we discussed it, he kept saying he wished that the lidocaine could be longacting, as it would give people so much more relief for extended periods of time, could it be used in those ways.  I did receive an instruction sheet saying it could be repeated 3 times in 6 months, I think , but I did not go back. I have had so many facet injections, and so forth, did not want more scar tissue, from repeated injections. 
I have pretty much given up on ever finding pain relief other than that supplied from opoids, etc, and that wanes as time goes on .  My leg continues to swell, and is bigger as time goes on. I can no longer wear jeans, or any pants that do not have some stretch, due to the swelling, as it increases over the day, and the jeans become to tight in the leg from thigh to foot.  I think I told you had fallen and torn a couple of things in the left knee, also, so it gives me fits every morning. The GP/dr doing my PM thinks it is a miracle I walk at all. The cold is terrible for the stems .
I am glad you are getting some relief and hope it continues and gets better as time goes on. Teresa
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on February 11, 2011, 04:15:19 AM
Hi All

Teresa- it's always nice to hear from you. Your experience to your back was similar to the cryo to my knee.

On Tuesday I had an appointment with PM doc. I was 26 days post-op from my 2nd cryo-ablation. The week before I started having 3 problem areas. One area had intense needle stick pain and 2 areas were beginning to burn. He injected all 3 areas and also blocked the saphenous nerve to the lower leg and top foot. So far the 3 areas injected are doing very well. No needle sticks or burning. It was kind of strange when the block wore off. The burning came beck as the nerve woke up, but after an hour of that , the burning has been cut down by about 80%.

Any moment without nerve pain, is a victory

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on February 14, 2011, 09:27:39 PM
Victory, indeed!  ;D
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Jill M on February 14, 2011, 09:51:15 PM
Pam,
I was just thinking of you. I hope you are still experiencing days without nerve pain.

Jill
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on February 15, 2011, 04:40:56 AM
Hi Jill

Thanks for thinking of me.  ;D  Haha...I was thinking of you and your progress lol. I see you hit 120 ! excellent !

Tomorrow it will be 1 week since PM doc injected the knee. I've only had a slight burn in one spot, otherwise I am still doing good in regards to nerve pain in the knee. The lower leg lasted only 2 days. I walked around a couple of hours with DH, at the Hot Rod and Custom Car show this weekend. I paid the price with a leg on fire all night long but the nerve pain in the knee still behaved.

Check Starpolisher's thread on AF research being done. I've spent several days finding articles and posting links

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Jill M on February 15, 2011, 07:54:52 PM
Pam,
Glad to hear that things are still doing well with the nerve pain in the knee. I will check out those articles you posted.
Thanks,
Jill
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on March 03, 2011, 01:57:54 AM
Hi All

Tomorrow will be a busy day. I have a long appointment with pain management. I see the PM shrink and my doc. I have to do some required testing for the shrink. It's supposed to be done yearly. I haven't done one for 2 yrs.  ::) then I have my usual appointment with him. After that I have a bit of a wait in the waiting room, before I see my PM doc. I'll need a few injections in the knee and another block down the leg.  My lower leg was really on fire last night.

Yesterday morning I woke up with really bad pain in my right forearm from the elbow to the wrist. I also had some red pimple like lesions. As the day wore on those areas got worse as did the pain. I also got more pimple things. it looks like I've come down with a case of shingles. I didn't get much sleep last night between the leg on fire and the arm on fire. So not only do I have nerve pain in my leg, I now have an arm to match.

Crap  :'( :'( :'( :'(

Pam

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Stasha83 on March 03, 2011, 09:42:43 AM
Hi Pam

I am sorry to hear that you are still having such a hard time. I had shingles about 10 years ago and it was awful and took me a good few months to recover from. Wishing you a speedy recovery.

I am also suffering from nerve pain (but only in the AF knee) and have been put on Gabapentin. I actually think that it may be helping which would be a small miracle in itself given that everything else (injections, nerve blocks, drugs) have failed so far.

Good luck with your appointments tomorrow, I hope you get some relief.
Title: Re: Open Debridement and Proximal Z-plasty
Post by: kcknee on March 03, 2011, 12:24:28 PM
Hi Pam-

Good luck at your appointments today. Maybe you can have someone look at your arm in between appointments. I think there is some kind of anti-viral medicine that may help with the shingles symptoms if you take it early enough. The last thing you need is an arm that hurts too.

Kristin
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Jill M on March 03, 2011, 04:19:24 PM
Pam,
I hope you appointments go well today! So sorry to hear about the arm pain. If it is Shingles they can give you an antiviral drug that can lessen the symptoms. It is definatley painful and can take awhile to resolve. Not what you need on top of your other issues.

Sorry the leg has been on fire. Praying that your injections relieve the pain.

Keep us posted.

Jill
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on March 04, 2011, 06:04:25 PM
Hi Jill, Kristin, and Stasha

Thanks for those happy wishes. It's always nice to have support before and after appointments, as we all have discover !

Took the tests. Boy, it lasted an hour !!!  The results show I am NOT an axe murderer  :o hahaha...... seriously, it showed we are pretty much spot on with what is discussed, during the session.

It was "confirmed" that I do have a case of shingles. I was asked if I had experienced any increase in stress lately. I said no. If stress was the kick off for shingles, my whole body would have been covered during the time my mom was hospitalized, died, funeral and going thru house.

I was placed on amitriptyline 25mg every night, for nerve pain and Famvir 500mg 3 times a day for the virus. He also recommend I see my primary care doc in 3 months to get the Shingles vaccine. He was talking about the postherpetic neuralgia that can happen, I said, don't tell me,,,,it isn't a 1% percent chance ?

I also got a saphenous nerve block for my lower leg and 4 areas injected in the knee , that are burning enough to be quite irritating.  I asked my PM doc why it is, that no matter what procedure is done to the nerves, the pain and burning ALWAYS comes back to that area.   I just want all the nerves to be stripped out , like they do for varicose veins !!!!!!  UGH......... ???

Next week is CT scan of the ankle and appointment with ankle OS

Pam

Title: Re: Open Debridement and Proximal Z-plasty
Post by: Jill M on March 04, 2011, 07:47:49 PM
Pam,
Glad you hear you appointment went well. Glad you hear your not and ax murderer- I might have been after an hour long of testing!

Sorry to hear you have shingles, no fun at all. Sounds like they have you covered on the meds. 

I wish you pain in the lower leg would would go away. I can't even imagine how painful and frustrating it must be for you when you have to undergo repeated injections and treatments and it STILL comes back!  :P

Hope your appointment with the OS for ankle goes well next week week. Have a nice weekend.

Jill
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on March 10, 2011, 02:29:52 AM
Hi All

The unthinkable happened this morning. I got up from the sofa to let my dogs outside. I stood up for a couple seconds, then proceeded to walk out to the kitchen to let them out. I started to feel really light headed. I've had these problems off and on, usually from dehydration. I went down hard, legs collapsed, bad knee hyper flexed, externally rotated, unbelievable pain, and the back of my head whacking the wood floor. I was dazed for a minute or two. Yelled for daughter to come down. She heard it, but thought I had dropped something. My knee hurt so bad. I could not bend ,straighten and I could see it swell. Mostly to the medial side. I can not stand any pressure going laterally. I am devastated....

Called Cincinnati, talked to D. I will see them 8:30 am on Tuesday. Can't get there sooner. Back on crutches, icing,elevating. Any movement brings PAIN.  To top it off I'm supposed to see ankle OS tomorrow.

I can't believe this happened.....I am so devastated

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Jill M on March 10, 2011, 02:41:28 AM
Pam,
I am so sorry that this has happend to you!  :'( :'(
I wish I could do something for you to make it better. Not much else that you can do besides icing, elevating, rest, and crutches. Glad you are going on Tuesday.
Hope you are able to tolerate getting out to the OS for your appointment tomorrow. Do you have meds that you can take for breakthrough pain?
Keep us posted. I will be praying for you. I hope the pain eases up.
Jill
Title: Re: Open Debridement and Proximal Z-plasty
Post by: kcknee on March 10, 2011, 02:55:50 AM
Pam-

I just saw your post. I am so sorry that this happened to you. After last week's shingles. injections and psych eval, I was hoping that this was going to be a much better and calmer week. I'm glad you are able to get back to your OS on Tuesday. Can they call you in any pain medication to get you through the weekend?

Maybe your ankle OS can do some imaging of your knee tomorrow at the same time he does your ankle. Is there anyone that could drive you to your appointment?

I'll be thinking of you and hoping that there is no serious problem.

Kristin



Title: Re: Open Debridement and Proximal Z-plasty
Post by: Jill M on March 11, 2011, 09:46:34 PM
Pam,
I have been thinking of you. I hope you appointment with the OS went well and the pain in the knee is easing up.
I know the wait until Tuesday will be agonizing.  :-[
Jill
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on March 11, 2011, 10:04:25 PM
Hi All

Thank your Kristin and Jill for all the support . Very appreciated. :)

I am so upset about my knee. I feel like 10 yrs of this knee [email protected] has been for nothing. Wiped out in one fall.  :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :and it doesn't stop there.

Saw my ankle OS yesterday. I had some good news and bad news. The good news is my CT scan showed one of the joints is fully fused and the other is about 1/2-2/3 fused. The bad news, I have a tendon, the Peroneus Brevis, is either getting caught on the plate in my foot or is caught in scar tissue. I will need surgery to free it up.

I told him about my knee injury. He put me in a full leg , hinged knee brace, locked at 30-60 degrees. This will keep it stabilized, so I can move a bit easier without horrible pain . I have very little flexion and extension and can't tolerate medial/lateral movement. I look like a transformer with my left leg sporting a full knee brace and a boot cast.

The foot surgery will be addressed when I find out the extent of the knee injury and what the future holds for it. We leave Monday to Cincinnati.

Pam



Title: Re: Open Debridement and Proximal Z-plasty
Post by: skibum9 on March 12, 2011, 09:23:20 PM
Pam

I still check this site every once in a while to see what is going on. I sure didn't expect to hear of a fall after every thing you have been through. My cats are always trying to pull a fast one on me. Last week it was move the hamper out from behind the bathroom door into the middle of the dark bathroom. Fortunately, I had seen part of this game start to play out before the final move and didn't completely trip over the hamper.

Have a safe trip and say hi to the gang for me. I sure hope that things turn out the best that they can.

Sharon
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Stasha83 on March 12, 2011, 10:33:35 PM
Hi Pam

I am so sorry to hear about your fall, it must feel like a never ending nightmare for you  :( I have only had to deal with this for 9 months so I cannot begin to imagine how you have coped for the past 10 years, you must be a very brave and strong person.

Wishing you all the best for Tuesday, I will keep my fingers crossed for good news for you.
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Jill M on March 13, 2011, 01:56:00 AM
Pam,
I am sorry to hear of the news about your foot. I am glad that the OS put you in a brace to help support the knee. I can only imagine how difficult it must be for you to get around with the knee brace and a boot cast!  :P
Wishing you safe travels on Monday. I wish you the best for you appointment on Tuesday.
Jill
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Teresa_S on March 13, 2011, 06:39:19 AM
Pam, I check here so infrequently, but was hoping for some good news , for a good change. So sorry about the fall, though there is no good time for a fall, why do they have to happen when you were making some progress with the ankle?  As for the tendon surgery, I would expect no less out of a complication for a recovery by you. I am so sorry and wonder if and when it will ever end with your knee.  I am glad you were able to get into Dr. N so soon, though I know it will be a long painful trip I had to watch my 7 year old grandson last week, HE was good as gold, but I was exhausted, just from being up from 6 am to midnight everyday without resting. As we are going to Disney World in June with grandkids, I have to start making progress against exhaustion, and being able to be up on my legs for more than one day in  a row.

I will be anxiously awaiting the news and what it will take to get your knee back on track. I have not even met my deductible for the last 3 or 4 years of my insurance. Bet your company knows better. Although with the cost of meds skyrocketing, I may not be able to afford them soon. I wonder how much funa 18 month old will have in the heat in FLorida, for days on end. Just you and your husband making the trip?  Keep us posted. I wish I could make it all better, as the kids say or kiss it and make it better. Teresa
Title: Re: Open Debridement and Proximal Z-plasty
Post by: kcknee on March 13, 2011, 07:57:06 PM
Hi Pam-

I just got back from a weekend at my parents' house and saw your posting. At least there is some good news with your ankle. The fact that one joint is totally fused and the other is over half fused is a huge improvement over last time you were checked. Hopefully the last joint continues to fuse successfully and that will be one problem over. That does stink about the tendon. Are they going to wait for the other joint to fuse fully before any more ankle surgery?

Good luck on Tuesday. I'll be hoping for the best for you. I'm glad your OS is one of the best OSs out there and that you are able to get to him so quickly.

Kristin
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on March 14, 2011, 10:33:52 PM
Pam:

I am devastated for you, too....and so sorry! I can't believe everything you have been through. We'll all be anxiously waiting to hear what Dr. N has to say tomorrow.

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on March 15, 2011, 03:50:27 AM
Thank you all for all the wonderful replies.

We drove thru 4hrs of heavy snow from KC to St Louis. Arrived in Cinci at 10:30. I will let you all know what the verdict is. I am scared to death.

Pam

p.s. Sharon, I will say HI to the gang  ;D
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Jill M on March 16, 2011, 02:11:53 PM
Pam,
So what did Dr. N have to say about your knee? Sorry you had to contend with bad weather on your trip to Cincy. Thinking of you.

Jill
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on March 18, 2011, 04:35:41 AM
Hi All

Sorry this reply is so late. My appointment was so long (5 1/2 hrs) and I was in so much pain after it ,I just wanted to put my knee on ice and take my pain meds. Yesterday was the long drive home. At least the weather was good for travel , unlike the day we drove to Cinci.

I was relived when xrays showed no damage to the implant , no loosening and no bone involvement. The Fellow came and examined me first. His technique was kind of brutal. When it came to testing the ligaments, his exam sent me to the roof in pain. I think I left finger holes in the pad, under the table. I could not relax my knee after that. Dr N's exam was fine, but I was already hurting. Dr N says I have a grade 2 MCL tear and tore my medial retinaculum. That's why I have pain medially and around my patella. It kills to even do a quad set.  He has my brace locked at zero , so my leg is totally straight. This is difficult because I am lacking 5 degrees extension. My flexion was 70. This is to put the fibers of the MCL in the proper alignment to heal in scar tissue.   I keep the brace on 24/7 except when I do my ROM exercises 3x/day. I'm also on crutches. It is hard to get around with a stiff leg.....getting up from a sitting position is hard. lol. He had me go over to PT to have them go over the Figure 4 program for rehab.

The ROM exercises are all done so as not to stress the MCL. I do 2 stretches, the hamstring and calf. 2 quad strengthening ones...gradually contracting the quad in a pain free zone, hold 10sec, then gradually let down. Doing each leg , one at a time, then together. Then put a half circle of foam under knee. Contract quad and push down on heel at the same time. This position does not cause pain to the patella, by not stressing the retinaculum. Doing a quad set is so painful. For flexion, I do the figure 4 which involves wrapping stockinette around my ankle on the bad knee leg then crossing my ankle over the lower leg of my good leg. Then pull the ankle up my good leg to form the number 4 , as you can see it typed here. This position keeps the medial joint line closed , which does not stress the MCL.

I go back to Cinci in 2 weeks for next appointment.  This is a very painful injury. Even in the brace, the slightest movement laterally/medially and any rotation, brings sharp , sharp pain. I'm also really swollen , like a cantalope.

I hope I made some sense  :P

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Stasha83 on March 18, 2011, 11:22:28 AM
Hi Pam

I have been waiting for your update, I am sorry to hear that you have damaged your MCL. I did the same last summer and was in a brace set straight for 6 weeks so I know how strange it feels with your leg straight all of the time! Getting up from a chair was very difficult as was bending down to pick anything up. I was also on crutches for the duration but towards the end I did a little bit of walking without the crutches and kind of just swung the straight leg from my hip (which is probably why my hip hurts now!).

I am sorry that you are having to go through yet another injury and setback, when will this end for you?  ??? I guess the only positive is that no further surgery is required. Fingers crossed that you will not have any further setbacks  :)
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Jill M on March 18, 2011, 02:58:59 PM
Pam,
I am sorry to hear of the injury to the MCL. I am glad that all the components are okay. I hope that you start to heal and you are on the road to recovery soon.

Jill
Title: Re: Open Debridement and Proximal Z-plasty
Post by: kcknee on March 18, 2011, 03:03:25 PM
Hi Pam-

I'm glad that the implant is fine and that there is no damage to the bones. You must have been so relieved to hear that. I was afraid it was going to be the worst case scenario when I hadn't seen your post yet.

I'm sorry that you are in so much pain and now have to deal with waiting for a ligament and a tendon to heal. I had an immobilizer on for 10 days after my ACLr when I wasn't even allowed to bend my leg when I took it off for a shower. I remember walking around the office like Frankenstein with my leg stuck straight.  Don't forget to put the stool back in the bathroom to put your leg up on.

Good luck and I hope you have lots of good healing in the next two weeks so your OS is happy at your next appointment. You deserve to get some good news then.

Kristin
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on March 18, 2011, 08:09:53 PM
Pam:

This is a good news/bad news situation....but at least it's not the worst-case scenario. MCL injury is very painful! My daughter had a 3+ MCL tear from softball six weeks before starting college as a freshman, which scuttled her college softball dream. As it was explained to us, at least the MCL has its own blood supply and is encased in a sheath, so it usually heals on its own without surgery. The brace is difficult, and the injury is really painful, and it means more PT, but you'll do it. I'm so sorry you have to go through this, though!

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on March 19, 2011, 04:34:16 AM
Hi Stasha, Jill, Kristin and Janet

Thank you all so much. Yes, it was a relief to know the implant was OK. I was scared to death I would have to have it done all over. They refer to putting the brace at 0 for the MCL as " sticking it down" for healing. I'm just concern there will be more stuck down than the MCL. I don't think this can be good for someone with AF.

All this pain has really aggravated the nerve pain, so I'm getting a double whammy in pain.

Janet, how heartbreaking for your daughter. That's horrible. I hope she is doing OK.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on March 20, 2011, 05:29:05 PM
Pam:

It was years ago for my daughter. It was really heartbreaking at the time, but she is fine now. She made the best of it and figured her life was leading her somewhere else. She got some opportunities in college that she wouldn't have had if she was playing ball....like spending a semester abroad. She's still playing softball four nights a week in the summer!

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on March 20, 2011, 05:52:12 PM
Hi Janet

That is fantastic about your daughter. I like what you said, where she thought life was leading her elsewhere. She truly found enrichment, she would never have found, by playing college ball.

I wish her every success in life  ;D

Pam

ps, my daughter is now designing clothes for an upscale menswear store and this store is thinking about adding ladies wear too.
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on March 24, 2011, 12:38:18 AM
Pam:

I remember when your daughter was going to school. Good for her for landing a great job. It's nice to be proud of our daughters, isn't it?

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Teresa_S on March 24, 2011, 07:23:14 AM
Hi Pam, I thought about you driving in that freak snow storm. My son has left Kirksville for St Louis, and hit it in Columbia at 11Pm at night, and could only drive about 30 miles an hour onto St. Louis. Had to be at work at 4am so barely made it to shower and go to work. We were not even having rain.  Guess the appt was a good and bad one. I have had that same tear on my GOOD knee, and got it from a fall earlier this winter. Got up, did not turn on a light, and one of the dogs had barfed some mucous or something, and my sock clad foot went one way the knee went another and the bad leg bent backwards a third direction. NOT ONLY was i DISGUSTED by I couldnot get up and all three dogs were surrounding me trying to help. OF course I landed in the middle of the room on the slick hardwood, that I had so patiently waxed. GOT to get another kind of floor, but this is an oldhouse, and the floors I like, do not seem to blend with the design. The pain is still a problem, esp at night, if I happen to sleep in one positon longer than 3hours.  I have thought about wearing a brace on both knees during the Disney trip, but figure I would fall when one caught on the other with each step. My neck spur is making my hands so numb and my fingers so thick that I drop almost everything I  try to do. It makes taking those small oxycontin a lesson in tolerance, as I drop more than I hold on to. Reallly need to go back to the patch, if I can get the back off them.

I know there are no words to really change anything for you.  I do wish you pain conrol, rapid healing, and few IF ANY complications. (none seemed overboard for you) I am hoping that knowing others care and think about you help, esp, in times when it all seems TOO MUCH for TOO LONG!!.  Hopefully spring is on its way, I had my son help me clean away the debris from my flower gardens, and the mums are already 3-5 inches, (and I do NOT let them bloom till late August, early SEPT), the lillies are growing 3 or more inches a day, and my FIRST TULIP bloomed today, along with one sprig of forsythia. Now, of course, snow and freezing temps are forecast. Hope I do not lose them. Even my lilacs are budding all over with huge buds. From the looks of the roses, many hanve notmade it through the winter.

I have decided I cannot go through another year without help, so after returning from Disney in June, I will begin the search for somebody who can help.

Good wishes for the next weeks, and a better trip to Dr. N this time, and hopefully the healing is on tract. Teresa
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on March 24, 2011, 05:59:08 PM
Hi Teresa

Thank you so much  ;D  I'm so sorry you fell and tore your MCL. I can imagine your dogs all around...do you still have your Great Dane ?  I know when I fell I was in so much pain and just had to sit for a few minutes to figure out how bad was my knee and how could I move it, to get up. It hurt so bad with the knee but also the pressure, pulling up on my shoulders ,which are so bad they need surgery ,but can't do it til I get off crutches !

My tulips are up but a little early to bloom. We have deer roaming our subdivision and DH saw them eating the tulip leaves. We live by a wooded area with a creek so we have lots of deer. The deer walk down the street late at night. We also have a lot of coyotes. We hear them howl every night.There is a bobcat that lives by the creek. I've seen him 3x's and a Great Horned owl who sits on our roof tops during the night. We hear his who, hoooo.......

This past weekend my son and DIL brought dinner over and announced, via t shirt on youngest saying, I'm a big sis . It took a minute to register this, then we said....are you expecting ? They said Yes ! So this will be their 7 child !  :o :o :o  I guess they had to beat mom and dad's 6. She is due in Oct. Their youngest just turned 1 in February.

Knee wise ,it is just as painful as it was when it happened, plus stirring up all the nerve pain.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Teresa_S on March 25, 2011, 03:37:18 PM
Pam   WOW, a 7th child, that is alot in today's economy. Good for them, they must enjoy being parents. We, too, have an owl, and his wingspan is about 7 foot. The neighbors have a 4pound dog, and are afraid he will whoop down and take the dog for food. My friend that has a horse ranch, and raises Arabians, has seen two big eagles already this spring. We have deer also, but they are not the problems that  coons possums and rabbits make.  No wolf, or bobcat though. \

Anyway just returned from my appt to get scripts, and the dr said he had a representative in with one of the nutrisuiticals in. It is called a medical food, for neuropathy, and the name is Metanx, that he gave me for my hands and feet.. Said it take abou 8 weeks to get full benefil, but they did studies with diabetic neuropathy, and did punch biopsy that confirmed nerve regrowth, and he was hoping would calm down nerve pain, instead of lyrica, neurontin, etc. as I cannot stand the side effects.  Anyway, just wanted to send the name to you so you could research it, he gave me 30 days samples, said, it is not covered by insurance, and runs about$40 month. two pills a day. Just thought anything was worth researching for you. I do not know if I will take it or not. Guess I will look up some and read.

Snow today, and my lillies are 6-9 inches tall, so hope they do not freeze, but the temp is 30-40 so hopefully not.   Teresa
Title: Re: Open Debridement and Proximal Z-plasty
Post by: MyKnee2010 on March 25, 2011, 10:14:56 PM
Hi Pam,

I've been following your messages for the last 2 1/2 yrs or so while dealing with my own knee saga. I was sorry to read about your fall & latest injury especially because it seemed like you were finally making progress! I've had both knees replaced in the last yr or so & am now dealing with bilateral saphenous nerve neuropathy.  Luckily my knee joints are doing well but the intense nerve pain is just about driving me crazy! 

I have to admit I sometimes kind of dread reading your messages because I'm always afraid I'm traveling somewhat down the same road. I'm at the point where my OS isn't really help anymore. He is very happy with my new joints & is afraid of messing with the nerves. He's suggested the usual meds & treatments (Neurontin, Lyrica, Amitryptline, Lidocaine patches, etc, etc). Amitryptline helps some but increasing less & less. A neurologist suggested a few more things which also didn't help. I'm now waiting from a referral from my PCP to try the pain clinic. I'm trying my local med center but if that doesn't help I think I might have to try the Peripheral Neuropathy Clinic at Mass. General in Boston. That's not that far & my insurance covers any treatment center in New England.

I'm going thru your messages again bit by bit to try to glean out info to use for my next Dr. appointment. I have to thank you for posting all your messages! I've learned so much here - more than I have from my doctors so far!

Thanks & take care!
Phoebe
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on March 26, 2011, 07:42:32 PM
Hi Pheobe,

Thank you for your very nice reply  ;D  I am touched that my posts have become a source of info for you. I am sorry you have found yourself experiencing a similar problem.

Nerve pain is h*ll, plain and simple.  The OS can only go so far managing nerve pain. Anything longer than the post op period is where you will find O's wanting to pass the buck. Pain management docs take over from there. It usually takes a combination of several meds to treat nerve pain. The price you pay is the side effects from them and the expense. I have experienced several side effects, such as weight gain, dizziness, and memory loss, and tinnitus, to name some of the worst ones. I gained about 35-40 pounds. I've lost #15 pounds since cutting down the cymbalta. I am currently on 20mg ( down from 60mg) I'm in the process of stopping it, this week. I would like to get back to wearing a size 8. I tried Lyrica and had to get off it after only 11 days. It had the worst side effects for me.  My blood pressure has been uncontrollable , from being in a constant state of pain. I am hoping I can get back to Baltimore to see Dr Dellon. Otherwise, I have exhausted everything and the next step is to place a spinal stimulator in me.

Since you live in Boston, you're close enough to see Dr Lee Dellon a world class peripheral nerve surgeon, in Baltimore. His website is :
www.dellon.com   He knows his stuff on peripheral nerves better than any other doc I've seen. You can email him and he will answer within 24 hours. The draw back is that he does not take any ins...he is a cash doctor. My first appointment was $600. I submitted my bill to my ins. to pay out of network benefits , so I ended up paying 20% and reimbursed the remainder. He has several free booklets to down load on his website.

When you go thru all my posts, you might find various websites I've posted. If you have any questions, please ask !

Pam   
Title: Re: Open Debridement and Proximal Z-plasty
Post by: MyKnee2010 on March 26, 2011, 08:25:18 PM
Hi Pam,

Thanks for your reply. My OS has been more the type who didn't want to pass me on to anyone else.  He did what he could & supposedly that was all that could be done for me.  I finallly decided to go elsewhere on my own - knowing that the was more that could be done. 

I have to stick with hospitals/doctors in New England or my insurance won't pay anything. I know Mass General is a very good hospital but I'm not familiar with any of the doctors down there. I'll have to do some more investigating. Right now, I'm waiting for my PCP to come up with a referral for the local pain clinic. So far, it has taken 2 weeks for them to get moving on it!  Now sure why - I think it's just a very disorganized place! I've been calling them every day to move them along this week - not sure if that's helped.  Hospitals can drive you crazy!

I tried taking Neurontin but it made me really sick. I tried Lyrica - it really messed up my vision so I stopped that pretty quickly. I've been taking Amitryptline for quite awhile now. At first, it did an amazing job of keeping the pain down but the pain keeps getting worse & increasing the Amitryptline doesn't seem to help.  Right now, I'm taking max doses of Tylenol & Advil and just hanging in there.

I'm sorry for all th problems you & others on this list have had but it's very nice to know I'm not alone!

Thanks,
Phoebe
Title: Re: Open Debridement and Proximal Z-plasty
Post by: MyKnee2010 on March 27, 2011, 02:17:34 PM
Hi,

I just went to Dr Dellon's website & started reading his book online.  It seems very informative. I do wish he had some warning about the graphic pictures though!  :o Anyways, reading through his explanations of peripheral nerve problems, I don't think I have neuropathy. To me it sounds more like neuroma or compression even though the neurologist said neuropathy. He didn't do any testing to define it so I think he was using the term very loosely.

I sent a note to Mass General's peripheral neuropathy dept last night to get more information. We'll see how it goes but at least I feel like I'm making progress!

Pam - thanks for giving me Dr Dellon's web address.

Phoebe

Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on March 27, 2011, 06:52:15 PM
Hi Pheobe

One of my big problems has been from neuromas in my knee, to the medial side. I form scar tissue around the nerves and then they ball up, sending tentecle like feelers that have no purpose ,just hurt.  I keep forming new ones which is unusual. I just had cryoablation done in January, had surgery with Dr Dellon in Nov 09, and had Dr Noyes remove them. I take meds, patches, and get monthly injections directly to them.

Here is what Dr Dellon did when I had surgery in Nov 09:

Neurolysis of the sciatic nerve, common and peroneal nerve at the knee, denervation of the proximal tibiofibular joint, neurolysis of the superficial peroneal nerve, fasciotomy of the anterolateral compartments of the leg ( for compartment syndrome of the left anterior and lateral compartments), resection of the deep peroneal nerve, resection of the saphenous nerve in the thigh and implantation of the nerve into the adductor muscle group, resection of the medial cutaneous nerve of the thigh and implantation if the nerve into the vastus medialis, resection neuroma of the medial retinacular nerve and implantation of the nerve into the vastus medialis and denervating the sinus tarsi

Here is an article he wrote:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2649919/

Here are some links to info I found in the past

Saphenous  nerve block (This is one of the injections I get monthly, the other is injecting each neuroma)

http://emedicine.medscape.com/article/83237-overview

patellar branch of the saphenous nerve pain

http://eng.hi138.com/?i259569_Patellar_branch_of_saphenous_nerve_neuralgia_diagnosis_and_treatment

http://journals.lww.com/annalsplasticsurgery/Abstract/2010/01000/Management_of_Chronic_Leg_and_Knee_Pain_Following.12.aspx

http://www.ispub.com/ostia/index.php?xmlFilePath=journals/ijos/vol3n1/palsy.xml

http://books.google.com/books?hl=en&lr=&id=MxMfcAvPitQC&oi=fnd&pg=RA2-PA363&dq=neuroma+excision+of+the+infrapatellar+nerve&ots=lSTtP0166M&sig=CO0uO6zzIySUCt_mcW3sOgw_tWs#v=onepage&q=neuroma%20excision%20of%20the%20infrapatellar%20nerve&f=false

and

http://www.jstage.jst.go.jp/article/nmc/46/2/62/_pdf

http://www.scielo.br/pdf/anp/v67n3b/22.pdf

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1296949/pdf/jrsocmed00019%2D0017.pdf

http://journals.lww.com/annalsplasticsurgery/Fulltext/2001/01000/Operative_Management_of_Neuromatous_Knee_Pain_.4.aspx   be sure to page all the way down on this article

http://www.springerlink.com/content/t0g406883v777736/fulltext.pdf?page=1

http://www.rosenbergplastics.com/pdfs/pn_knee.pdf

The next link is on cryoablation:

http://www.painphysicianjournal.com/2003/july/2003;6;345-360.pdf

Don't forget you can email Dr Dellon and he will answer your questions. He is very personable

I know how bad nerve pain gets....many times I said if I was a wild animal, I would have chewed my leg off.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: MyKnee2010 on March 28, 2011, 01:30:12 AM
Wow, thanks Pam for all the info!

How is your leg feeling now? Has it gotten any better since your last fall?

Have you ever tried acupuncture? I've been thinking about trying it but I'm not sure if it's worth the time & money or not. From what I've read on the internet, it might help some but I don't see anything that gives a glowing review.

The other question I have for you is about the type of pain you have.  I have pain on the medial side of each knee & it feels like someone has jammed a big wooden stake into each knee. All I want to do is GOUGE that spot out & remove that stake. I was trying to explain that pain to my docs but both the OS & the neuro looked at me like they just didn't get it. They talked about burning & tingling but while I do get that all the way from my knees down to the big toe on each foot, that isn't the worst part. I'm just wondering if you get that "stake jammed into your knee" feeling too?

Thanks for all your help!
Phoebe


Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on March 29, 2011, 04:18:10 AM
Hi Pheobe

I can understand your description of your nerve pain. Until you have it, you can't understand how intense and the way it can have many facets or types of pain. Mine came in the form of intense burning with flare ups of burning. It felt like I touched my leg with a curling iron. I also had sharp, throbbing pain and hard needle sticks. Those who have had this nerve pain have all described , wanting to cut their leg off, take a chain saw to it or as I put it, chew my leg off.  Nerve pain is unrelenting !

Here is another place for searching. Be sure to read all the way down. There are a couple of links to saphenous and infrapatellar pain.

http://www.wheelessonline.com/ortho/work_up_of_the_painful_total_knee_arthroplasty

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Jill M on March 30, 2011, 03:27:58 AM
Pam,
You continue to be such a source of inspiration to many. :)  Hope you are hanging in there! Thinking of you.
Do you go back to see Dr. N next week?

Jill
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on March 30, 2011, 04:56:02 AM
Hi Jill

Thanks so much  ;D    As a matter of fact, I leave tomorrow to go to Cincinnati. My appointment is Thursday. The knee is still painful, swollen and feels unstable. It is hard to do the different quad sets because of the torn retinaculum.

I'll post about my appointment.  Hope you are continuing to do well. How is work going?

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: MyKnee2010 on March 30, 2011, 12:46:23 PM
Thanks Pam!  I went to an acupuncturist yesterday. Seems like a very nice & knowledgable guy. It didn't seem to affect my knees until a couple hours later - then they really started to hurt. Didn't know if I was going to be able to sleep last night or not but thankfully I fell asleep after awhile. This AM, they are still hurting like crazy. I have another appointment with the same guy next Tuesday. If my knees are still hurting on Friday I'll call him & see if that's normal or if I shouldn't try it again.  I finally got an appointment with the local pain clinic for the end of April.

Good luck with your appointment!!!

Phoebe
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Juneau on March 31, 2011, 05:38:43 AM
Phoebe

I have had acupuncture on and off over several years. I currently get it once a week. I have to watch that I am not too active an hour or two after the treatment. If I try to run errands or so and am on my feet, I notice a strong pulling in my legs later and it can be quite uncomfortable. I also find that my legs react more if they were stiffer before treatment. Somehow the acupuncture stimulates the meridians and it is normal to feel it most where you need it most. However, being in pain for several days is definitely not OK and I never have experienced that. So I agree that if you are still hurting on Friday, you should re-consider next steps.
Title: Re: Open Debridement and Proximal Z-plasty
Post by: MyKnee2010 on March 31, 2011, 09:12:10 PM
Thanks for the reply Juneau! Today is Thursday - 2 days after the acupuncture & knees are still very sore. It's an intense burning/buzzing down the medial side & across the front of each knee with a "water running down my leg" feeling down the medial side of each leg.  I talked to the acupuncturist this AM. He said the nerves must really, really be sensitive/aggravated - more than he had thought. This is what my OS & neurologist have also said. The acupuncturist said he'll have to go much more slowly & carefully next time - now that he knows how the nerves will react.

I probably wouldn't go again but my husband really thinks I should give it another try so I said I'll go one more time. If my knees hurt this much again - that's the end of it. I also now have an appointment at Mass General Hospital with a peripheral neuropathy doctor. It's not until May 10th but at least that's only about 6 weeks away!

Thanks again
Phoebe
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Jill M on April 02, 2011, 12:37:06 AM
Pam,
Hope your appointment went well in Cincinatti. Sorry to hear that the knee is so painful and swollen. Nothing worse than having pain and know that you have to do the exercises anyway!
I am doing pretty well. Work is crazy! I had an awful week. I didn't do well taking care of myself and that is not good. My husband got really upset at me and really got me "mentally" in the right spot. NO job is worth hurting my knee! I have come too far!
I go back to see Dr. B on the 13th. The redness has gone away and I am all done with antibiotics.
Jill
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on April 03, 2011, 04:20:50 AM
Hi All

Sorry this is a little late.......we decided to take a leisure scenic way home. We followed the Ohio river scenic road thru all of lower Indian and thru Illinois. It took 2 days. It was fantastic. Can't wait to try it on the motorcycle.

So Thursday was my appointment. Dr N examined the MCL by testing how loose it was and joint space opening. Good news is he feels the joint space has closed up and the ligament feels tighter. After having my brace locked at 0 for almost 4 weeks, the MCL has accomplished becoming" stuck down" with scar tissue........the only good thing about forming scar tissue. I can come out of this brace this week and go into my custom Defiance brace full time. The instability I feel now has more to do with muscle ( lack of), than the MCL

There always has to be a spoiler though. The price of having a brace locked at 0,  24/7, is the affect on ROM.  My flexion has suffered, measuring at 75 cold and close to 90 after a lot of passive stretching from the therapist and lots of work on a tight patella. Even though the MCL is doing better, it is still very painful esp with the tear to the retinaculm. Doing all the rehab exercises involves tightning in that area which equals a lot of pain. Dr N is having me go thru formal PT, 3 times a week, in hopes of improving my flexion and patellar movement.I'm going to have to take a pain pill before PT to get thru it. I also have home rehab to do too.  I'm also still pretty swollen, despite taking Celebrex and icing. At it;s worse, it swells to the size of a cantalope. 

It will feel good to get out of the long brace locked at 0 and back into my custom brace. I will need to get PT scheduled Monday.  I also have an appointment with pain management. All this [email protected] with the MCL has stirred up the nerve pain. I look forward to getting the nerves injected.

On a different subject. When I go to Cinci , I board my 2 mini dacshunds. One is 11 yrs old. He has been having difficulty breathing lately. Had the Vet check him out . The Vet called me to report, after various tests, my dog has congestive heart failure  :'( :'(  There might also be some problem with his liver. He will need additional blood work later for that. He now has to be on 3 meds. Two of the meds are for humans, the other expensive one is a vet med. This will be about $150/month in meds  :o :o :o :o    I love my dog, he was a valentine gift from DH in 2000, it's just a shame it is so expensive. I dread the vet bill tomorrow when I pick them up.  :o

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Teresa_S on April 03, 2011, 07:27:35 PM
Pet babies are costly too. A friend has a Great Dane that had to have his back leg amputated. He fell on a Sat. took him to a vet ER on a Sat. in KC, and they said his broken leg was due to osteosarcoma, but the good news was the cancer had not spread according to xrays. It was a back leg, andhe is home, and being babied. They opted not for chemo, dogbaby is only 4 years old. Glad your knee seems to be making progress. But it has become a part of our lives taking care of them. Think how much more free time we would have. Enjoy your drive, Teresa
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Juneau on April 03, 2011, 08:12:55 PM
Pam,
Good luck with getting strength back into your knee and good thoughts about healing!

I am glad that you took the time and had a nice drive back home. It's so good to take a break from it all and enjoy the beauty of our surroundings. That's very healing!javascript:void(0);
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Jill M on April 05, 2011, 01:46:31 AM
Pam,
I am glad to hear you had a good visit with Dr. N and a nice drive home. I hope that the upcoming PT isn't too awful for you.
So sorry to hear about your dog being sick with heart failure. I am glad that he was at the vet to be taken care and get checked out.  It is a shame that the medications have to be so expensive. I hope the bill isn't too outrageous.
Keep us posted on how you are progressing and how the doggie is doing too.
Jill
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on April 05, 2011, 02:40:00 AM
Hi Ladies

thank you so much for thinking of my dog.  They are always there for us, no matter what and only want a pat on the head. They are our hairy,furry therapist !

I can't believe I'm here to write this. Today at pain management , what could go wrong, happened. I had the usual nerve blocks I always get, only this time, I had a serious hypertensive episode. After my procedure,my BP was 175/110.  That wasn't the worst of it. I had a horrendous throbbing headache,which also involved my eyes. My ears became numb for hearing, difficulty breathing and chest pressure. My next BP was 180/120, they wheeled me into the treatment room to hook me up to the EKG machine and start an IV. It took 11 sticks by 2 anesthesiologists. Finally got it done, using pediatric needles in my foot. My heart was beating hard along with my throbbing  head. I also had upper chest pressure .Thru out the ordeal, my pressures did not get below 105diastolic.

 I had to be transported across the parking lot to the ER. They had to call the ambulance to transport
me.  When we got there, my DH was there waiting.  They drew bloods, X-rays and gave.me IV Zofran,
Morphine,and Clonidine. Some time during the couple hours spent in the ER, my pressure finally came down to
the 140's/90's. I slept part of the time from the meds and the whole ordeal just wore me , I'm still tired. Now I am
on another medication. I have to see my PC doctor and cardiologist. I also have to see a nephrologist because
 they take care of people with uncontrolled blood pressure. I already have an appointment for that one.  The
doctor's discussed the possibility of my having a reaction to the lidocaine used in the blocks. I had about 8 neuromas injected and a saphenous nerve block in my thigh and a saphenous block to my tibia, just below the knee.

I hope it is not the lidocaine because I really need those blocks done once a month. I look forward to getting the pain relief , even though it does not last too long.

Too tired now, good night

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: kcknee on April 06, 2011, 01:07:59 AM
Pam-

I checked to see how your appointment with Dr. N was and am sorry to see that you had such a horrible day yesterday. That must of been so scary with your blood pressure going up like that. I'm glad you were at a hospital when it happened so you could be helped right away. Hopefully there is an explanation for why it happened that isn't the lidocaine.

I'm glad your knee is starting to heal from the last injury. Hopefully with the help of your pain medicine, your PT can work your ROM back.

I'm also sorry to hear about your dog's health. I hope he starts feeling better once he gets on all his medicine too.

Kristin
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on April 06, 2011, 04:47:24 AM
Hi Kristin

Thanks so much. It was very scary. I do not want a repeat of that. I have appointments tomorrow with the cardiologist and primary care doc. It will be interesting to see what they can do for me.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: MyKnee2010 on April 06, 2011, 07:51:01 PM
Hi Pam,

So sorry to hear about your hypertension episode! I hope they discover what the problem is & it doesn't affect future lidocaine treatments. At least it sounded like your Cincy appointment went fairly well! Hopefully the ROM thing will come along also! We're always rooting for you here! :)

I was sorry to hear about your dog too. Just one more thing you don't need! Friends of ours had a dog with a severe cardiac problem. They were concerned about the costs of the meds so they asked the vet to give them a prescription & then they found an online site where they were able to get the meds at about half price. I don't know if that will help you but it's worth a shot. I believe they used entirelypets.com. There is also 1800petmeds.com. You have to get the prescription from the vet but the meds are the same.

I hope the rest of the week goes much better for you & your little dog!

Take care,
Phoebe

Title: Re: Open Debridement and Proximal Z-plasty
Post by: Janet on April 07, 2011, 12:52:05 AM
Pam;

You had too much bad news....but at least a bit of good news too. No wonder you're tired, your body has gone through an awful lot lately. I hope they get to the bottom of your hypertensive episode, and I hope it's not caused by the lidocaine! But at least your MLC is healing. Like you said, scar tissue is good for something.

Sorry about your dog, too. Everything at the vet is so expensive! Checking for the med online is a great idea.

Hope your appointments go well tomorrow. No more drama, OK  ;D

Janet
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on April 07, 2011, 04:04:20 AM
Hi Phoebe

Thanks so much ......the last petmed phone number you mentioned is one we thought we might try. We want to make sure our dog will stay on one dosage rather than constant adjustments. Once we feel he is  dosage stable , then we'll ask the vet for script and call the 1-800 number. So far he is doing OK , he is  playful and is not breathing hard. He loves to take his meds.....balled up in some cheese !

Today saw Cardiologist and PC doc. Cardiologist says I need stress test and tilt table test. There was some things on my EKG that had some concern. My PC doc is having a bunch of lab work done , but I have to be fasting to do it. I have to see a nephrologist in May. According to some of the lab results from ER, I am showing early signs of kidney disease.

My pain doc called to see how I was doing. I told him I hope this episode doesn't stop my monthly injections.

This all started 10 yrs ago from a lousy broken leg.  You couldn't find a better way to show how a person's health cascaded down, from one single event. I was perfectly healthy before my broken leg.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: MyKnee2010 on April 07, 2011, 04:59:07 PM
Hi Pam,

It's amazing that one thing like a broken leg which for most people will heal & not cause any more problems, can lead to 10 yrs of pain & increasing number of other issues! I know quite a few people who have had their knees replaced & everything's great. I have my knees replaced & end up with intense nerve damage in both legs. Who knows why these things happen?

Hang in there & hope for the best with your May appointment. I have an appointment with a peripheral neuropathy doc in May so I'm hoping for the best then too!

Take care!
Phoebe
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Jill M on April 08, 2011, 09:24:05 PM
Pam,
So sorry to hear about the issues at the PM doc with the hypertensive issue that sent you to the ER. I am so glad they responded so quickly. It must have been really scary for you. I hope that all of your testing turns out okay and you are able to continue with the nerve blocks for your pain. You don't need anymore problems.
Glad to hear your dog is doing well on the new meds.
Jill
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on April 25, 2011, 08:14:29 PM
Hi All

Went thru a couple of heart tests and lab work about 2 weeks ago. The nuclear med test /stress test turn out OK. My stress test was done using a drug called adenosine. It stimulates the body the way actually running on a treadmill would. I've had it 2 times before. It makes you feel horrid for 3 min while they monitor your heart and blood pressure. If I was running, I would not have felt that way. The tilt table test was interesting. I was placed flat on a table , strapped down then raised upright to 60 degrees, standing up for 30 min. My BP is monitored during this time. They were basically waiting for me to faint. My BP at the start was 158/97 HR 60 , after 20min, they sprayed nitroglycerin under my tongue, to dilate the vessels to speed the process along. The test was stopped after the 30min, I never fainted even though my BP was 85/67 HR 70, at the end. They seemed to be perplexed from the results. I meet with the Cardiologist in May to go over the result. My QT interval was 520 which is high...for all the nurses out there. Lab work came back showing high cholesteral and LDL., so I have to add another daily pill, a statin drug, to the pharmacy I already swallow on a daily basis. The doc feels one of my meds for neuropathic pain is causing some problems.
 
Been doing PT twice a week. Just closed chain exercises working on quad , ROM and patella mobes , deep tissue massage. Flexion is about 80, extension is good. However quad contractions are painful due to the tears to the medial retinaculum tissues, so I can't do too many. Deep tissue massage to the area, my PT is feeling lumps of scar tissue. This also stirs the nerve pain up even more. My knee is still swelling to the size of a cantalope ,so I've been elevating and icing. Because the quad is so weak, I am still in the full leg brace because my knee is still buckling or snapping backward at times.

My daughter was on her way to St Louis on I-70 when the tornado hit. They were passing the town of Wentzville on the western side of St Louis, when they saw it. They had to pull over and wait for it to get ahead of them. She said it was very close and very windy. At one point they thought they were going to have to get in the ditch by the road.  All the storm chasers went ahead of them.  Her destination in St Louis did not get hit.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Jill M on April 26, 2011, 10:44:25 PM
Pam,
Sounds like you have been busy with testing. Glad to hear the stress test turned out okay. Sorry to hear you have to add more medications for the cholesterol and LDL. :-\

I hope that the knee swelling starts to subside. I can only imagine how miserable you must be with the nerve pain, brace, and quad weakness. Hang in there!

Glad you daughter is okay. My family lives in St. Louis. My Aunt lives just a few miles from the Airport. She was very lucky not to have been in the path of the tornado as well.

We are having crazy weather here in KY as well. It has been raining for a week or more and we have had several bad storms/tornado warnings and lots of flooding.

Jill 

Title: Re: Open Debridement and Proximal Z-plasty
Post by: kcknee on April 30, 2011, 04:05:41 PM
Pam-

I'm sorry that you are going through other medical problems too. Hopefully the doctors can at least get the side-effects from the medicines under control.

I hope that your latest knee injury starts healing soon so that you can get your ROM back more without so much pain. I'm just having temporary nerve pain now from compartment pressures and it's horrible.

(I had written before asking about  your prior fasiotomy and the cause of the compartment syndrome. My OS had been thinking some kind of entrapment, growth or tumor even though to me it seemed obvious it would be scar tissue causing my latest recurrence. I did get my MRI results and the report has scar tissue written all over it. I meant to only delete the section with my question, but unfortunately had deleted the rest of my message also.)

I hope things start getting better for you.

Kristin
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on May 01, 2011, 05:06:08 AM
Hi Kristin

I thought my eyes were playing tricks on me.....first I saw a post from you, then I didn't ! :P :P

I believe the compartment syndrome was from the severe fractures to my tibia and fibula and all the surgeries I had. I had a couple surgeries for those fractures too. I had nerves imbedded in scar tissue in the compartments causing not only severe pain, but muscle wasting. I absolutely have no muscle in my lower leg. My Peripheral nerve surgeon pointed that out to the assistant surgeon before surgery and took several pictures. He did so many procedures (8 thru 4 incisions) at one time. He said usually one procedure is the normal surgery. I had so many nerves that needed either a neurolysis, resection or dennervation. I need more work done to some other lower branches of the saphenous nerve and my Dr thinks one my have come out from being embedded in the muscle.

I'm sorry you are experiencing nerve pain now. I hope you don't have it for long. Nerve pain is horrible.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on May 03, 2011, 05:45:56 AM
Hi All

My knee is super sensitive to PT right now. The very basic of exercises. Last week my PT cut back on mobes and tissue massage esp to the medial side. Otherwise all I do are exercises involving quad sets.  No weights involved. My knee still swelled like a cantalope and hot. I told him I thought it was all the quad sets. everything was done as 3 sets of 10. This really causes pain to the whole medial side, since I tore everything on that side. It starts to be painful after the tenth and by the 20th one, I can't take the pain I barely can contract it, because of the pain. It is more than somatic pain , this is really stirring the nerve pain esp as the day goes on. In the meantime, my quad is wasted , I can't get out of the long brace because my leg buckles and snaps back to hyperextension......not a good thing ( sorry Martha)  I asked if I had a terminal quad

Today we are trying just 2 sets of 12. We also are mixing up some of the exercises to disperse the ones that involve setting the quad. I can't be without mobes, but they are very light. I wonder if it helps at that pace.

Hopefully I won't have to cut back even more.  Very, very frustrating >:( >:( >:( >:( >

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Jill M on May 03, 2011, 03:18:43 PM
Pam,
Sorry to hear you are having such a difficult time with PT, pain, and quad weakness. I wish I could make things better for you! Is there anything that the PM doctor can do for the pain?
What about a quad muscle stimulator? I don't know if that would help or cause more pain.
Praying that your medial side starts to heal and the pain settles.
Thinking of you!
Jill
Title: Re: Open Debridement and Proximal Z-plasty
Post by: MyKnee2010 on May 05, 2011, 07:55:18 PM
Hi Pam,

I hope PT is starting to get a little better for you. My PT said PT exercises should hurt while you're doing them but not afterwards. I wonder if you're just doing too much & they need to cut way, way back to let you heal alittle before they try to work on your strength & ROM. 

Take care,
Phoebe
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on May 06, 2011, 01:21:33 AM
Hi Pheobe and Jill

Thank you Jill, I wish this would all go away....I should be able to wake up from this nightmare sometime !!!

You are right Pheobe. This is all from doing a quad set....the most basic of basic you can do. It really pulls on those torn tissues medially. I think he took me way up on reps too soon. So the knee is reacting to it. This week the reps came down to 2 sets of 12. the knee reacted with a lot of swelling and pain late afternoon -eve. Yesterday's session was less reps, not on purpose, but because PT had to go to meeting. I didn't get the session I would have gotten so the knee did better. I might as well not go to PT and not waste the amount of sessions I have left, covered by ins. I have 2 shoulder's that have had surgery put on the backburner because of the knees. I was hoping to start that in the Fall ( as long as I can stay off crutches) , so I need PT visits left on my insurance.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: MyKnee2010 on May 06, 2011, 02:41:56 AM
Hi Pam,

Shoulders too? Oh no! Is that from using crutches? A friend of mine had his knee replaced & then ended up having surgery on both shoulders after having ripped them apart using crutches. Every time I'm on crutches he reminds me to be careful!  So far, I've managed to keep my shoulders intact.

The nerve pain in my legs seems to be getting worse. Luckily, I have an appt with a nerve doctor next week.  Part of me is excited to go & part of me is afraid he'll say he can't do anything to make it better.  Do you remember how long the recovery time was when you had surgery on your nerves - either neuroma excision or decompression of nerves? I'm thinking I have one or the other or who knows maybe some of both. I'm hoping maybe this guy can do some sort of nerve block and not surgery. I guess we'll see. As long as he does something to help, I'll be happy.

Have you heard anymore about your cardio results? I couldn't quite picture the tests when you described them but it didn't sound like much fun!

Take care,
Phoebe

Title: Re: Open Debridement and Proximal Z-plasty
Post by: MyKnee2010 on May 11, 2011, 10:21:46 PM
Hi Pam,

I've got a question for you. I know I read that you had neuromas excised - did you also have a nerve division? I had an appointment with a neurosurgeon to ask about the nerve damage in both legs. He is going to look to see if the nerve is compressed, excise any neuromas, & if all else fails divide the saphenous nerve from the femoral nerve. I haven't heard from anyone else that has had this done & was wondering if you had something like that & how it turned out.

Thanks - Hope you're doing better!
Phoebe
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on May 11, 2011, 10:53:32 PM
Hi Pheobe

Here is the list of procedures my peripheral nerve surgeon performed, from my op notes :

Neurolysis of the sciatic nerve, common and peroneal nerve at the knee, denervation of the proximal tibiofibular joint, neurolysis of the superficial peroneal nerve, fasciotomy of the anterolateral compartments of the leg ( for compartment syndrome of the left anterior and lateral compartments), resection of the deep peroneal nerve, resection of the saphenous nerve in the thigh and implantation of the nerve into the adductor muscle group, resection of the medial cutaneous nerve of the thigh and implantation if the nerve into the vastus medialis, resection neuroma of the medial retinacular nerve and implantation of the nerve into the vastus medialis and denervating the sinus tarsi

Note my saphenous nerve in the thigh was resected and implanted into the adductor muscle group. That might be what your doc plans on doing.  The pain I've been experiencing could be from that nerve end coming out of the muscle and also a distal branch of the saphenous nerve causing all the pain in my lower leg and foot......according to my surgeon, thru email conversation. I won't know for sure til I can get back to Baltimore to see him.

Hope that helps you out  ;D

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: MyKnee2010 on May 11, 2011, 11:19:20 PM
Thanks Pam!  Wow, as I get more & more into this I have a greater appreciation for what you've been dealing with! It sounds like resection is the correct word for what my surgeon is planning on doing. He said he implants the nerve end into fat around the thigh instead of muscle so it won't cause pain. This is the first time that I've ever been glad that I have plenty of fat on my thighs!  :) 

The surgeon injected lidocaine into the worse spot on each knee to see if a nerve block would help the pain. It took about 2 hours before I felt any relief & then it was just in the spot he injected into - the rest of both knees still hurt. The surgeon was concerned when I didn't get any relief right away. I called his office this AM to let him know that at least I got some relief after awhile. Hopefully, he'll be able to get this nerve stuff under control. I hate it when doctors look at you and tell you you're an interesting case!

When do you go back to Baltimore?

Take care!
Phoebe
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on May 12, 2011, 02:17:54 AM
Hi Pheobe

Dr Dellon is a plastic surgeon. Plastic surgeons really know ALL the nerves, big, small, to teany tiny , in the peripheral nerves.. They are the ones who reattach severed fingers, repair severed tendons and such. He told me that it was important to get immediate relief with the injections. That let him know it was a neuroma or direct blockage of that nerve. If I didn't, I understood that it could be a problem originating from the spine in the nerve root supplying that particular area. He drew the nerves out on my leg to where it looked like a map. When he injected all the areas which included other areas besides the knee. I had trauma from fractures. I had immediate relief. The nerve ends can be buried in fat or muscle.

It's all up in the air as to when I go back to Baltimore. It's all about finances,...........airfare, hotel, rental car, and up front cash to pay the Dr. He does not take insurance, so I come up with it at the beginning, then submit to ins for out of network. That's the big downfall.  I'm also trying to get it all done in one visit....go for evaluation , then have surgery next day or day after., so I can avoid airfare and all those other expenses twice.

When are you planning on having surgery? 

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: MyKnee2010 on May 12, 2011, 03:29:59 AM
Hi Pam,

Every time I try to answer you my internet connection drops so I'll try again for the third time! Surgery is supposed to be the end of June. I am going to ask the surgeon about the lack of immediate relief following the lidocaine injections. This surgeon is very knowledgable but I want to make sure all my questions are answered before surgery day.

Thanks for your help!
Phoebe
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on May 13, 2011, 09:43:43 PM
Hi Phoebe

I wanted to add to the lidocaine injections and immediate relief information. I just remembered in a visit to Dr Noyes , before he did my April 08 surgery, he injected the nerves in the knee, he asked if I got immediate relief, which I did. This reaction told him that the nerve pain was from neuromas and not something originating in my spine. A few months later, he did surgery to remove about 6 neuromas, besides a LOA and synovectomy. Unfortunately I had more develope, causing a lot of pain. The neurontin wasn't helping, so he referred me to pain management.In July or August of 09. He said I had intractable nerve pain and said I needed to see Dr Dellon.

I just wanted to add this as additional info to you.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on May 17, 2011, 04:17:58 AM
Hi All

Today was my first pain management appointment since the one where I had to go to the ER with a hypertensive episode with a BP of 180/120. Since then I've seen my PC doc, Cardiologist and last week, the Nephrologist. I had to under go a stress test, tilt table test and numerous lab tests. I've had medications added and adjusted . I now take a statin drug and 2 different diurectics to add to all the other's I take.

Since then , I've developed 2 more neuromas, plus some have "awakened", since the cryoablation. This time they are on the lateral side. I've had several surgical procedures to that side , so I guess it was bound to happen. They have bothered me for a couple weeks with horrible burning, sensitivity and throbbing.

Due to the hypertensive episode, I was placed on the heart monitor and BP was done every 2 minutes, as a precaution. I had 10 injections and 2 blocks. This time I had no problems. My BP didn't get above the 150/90's. So far I am still totally numb and enjoying every minute of it !!   ;D

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: kcknee on May 18, 2011, 02:36:20 AM
Hi-

I'm glad that overall it was a good appointment and that you won't be in a pain for a while. It's great news that they have your health under control now and you didn't have another hypertensive incident and end up in the ER. That was way too stressful. You must have been nervous going into this appointment.

I'm sorry to hear that more neuromas have formed and that some of the frozen ones are acting up. Are the ones that are acting up less than they were prior to the cryoablation?

Kristin
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Jill M on May 18, 2011, 02:39:45 AM
Pam,

Glad to hear you PM appointment went well.
Sorry to hear about the new neuromas and they others starting to cause pain. I hope the injections give you some lasting relief!

Jill
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on May 26, 2011, 04:34:13 AM
Hi All

Came as close as I ever have to a tornado today. We were involved in the tornado out break today that went on to eventually hit Sedalia Mo. This came within a few blocks. Was watching as it started in the county below us, then they announced that is was now near where my son and DIL lived, coming right down the highway. I called her told her tornado take cover. She was not home , I asked where my granddaughters were. Fortunately in school. Their PE teacher had taken a pic of it just as the warning was coming. Called my daughter , left voice mail to take cover. She called and was safely at work in an area not affected. She called her BF's roommates, who live in an apartment, to get over to my house. Then my son and I heard the progression on down the highway. It was bouncing up and down. They announced there were 2 touchdowns ,a few blocks from me. My other daughter watched from 3rd floor of her office, called me saying there were 2 tornadoes she saw and the touchdowns. I was next in it's bouncing path. We were under the table in our basement. I was just bracing myself to hear and feel my house getting hit. Our cell phones were useless as the system was overloaded with massive amounts of texts and phone calls. The tornado went up and remained a funnel all thru my county. There were other funnels and brief touchdowns a little further away from me. I felt really lucky given the horrible damage from tornadoes further south of us. Wow ! close call for sure . My DH was in Boston at the time.

The news just said there were 54 tornado warnings in our 44 county area.

Anyway, saw my ankle OS on Tuesday. I am still getting intermitant sharp pain to the proximal 5th metatarsal, which will feel like I broke it, when it happens.  He feels a tendon might be getting caught on my hardware or I might have scar tissue or torn tendon, so I am having surgery for hardware removal and tenalysis and possible tendon repair to my foot. It will be outpatient, which is fine, since I had a horrible inpatient stay last Oct for the fusion.

Still doing PT for the knee. Added a few new things but keeping reps very low to not irritate the knee. Today I didn't hear the alarm for PT appointment at 8:30am. Slept right thru.  :o  damn medications !!  Called and apologized . I have appt tomorrow at a more civilized time of noon.

Last week I started a diuretic for BP, from the nephrologist. I was prescribed 2 different ones. I had already started 1 of them, then added the 2nd one 3 days later. I became violently ill  :-X  30 min after taking it, with nausea and, no other way to put this, violent diarrhea  :-X :-X. I was very lightheaded and dizzy. I think this may have been the worst I have ever felt in my life. DH wanted to go to ER. I couldn't budge from the bathroom for anything. It last 1 1/2 hours, before I felt it was safe to leave the bathroom. I threw the medication away and called Dr office to report what I went thru the night before.  For now, I only have to take the first one.

Last but not least. Got an email from my nephew. He is an MP in the Army. He has now been deployed to Afghanistan and will be training their police in Kandahar for 1 yr.  I've got a whole year of worry, for his safety.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Jill M on May 26, 2011, 06:56:22 PM
Pam,

So glad to hear you are safe with all the bad weather.

We have been having awful storms in KY as well. It seems every other day it is a tornado warning or severe thunderstorm warning. We lost a tree last night in the storms. I can't really complain especially after seeing the horrible destruction in Joplin, MO.

So sorry to hear you have to have another surgery on your ankle, I am glad that is outpatient especially after all your problems with post-op pain with your surgery last fall. I sure hope this will take care of your pain.

Your drug reaction sounds just awful ! :P  I am glad that you threw it away. Hopefully the first med will do the job and you won't have to add any additional medications.

I will be saying prayers for you nephew as he deploys to Afghanistan for a safe return home. I am so greatful for those that serve our country.

Jill
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on May 27, 2011, 11:44:49 AM
Thanks Jill. I am writing from ICU, will elaborate. Later
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Jill M on May 28, 2011, 02:10:16 AM
Pam,

I don't like that you wrote your post from the ICU!  :'( 

I am saying a prayer for you. Keep us posted.

Jill
Title: Re: Open Debridement and Proximal Z-plasty
Post by: kcknee on June 01, 2011, 03:27:42 AM
Pam-

I just saw your message. I really hope everything is okay. Between the tornadoes, your family, your pets, your knee, your ankle, medicine interactions and blood pressure issues you have had way too much to deal with lately.

I hope things are going better for you and you are home and well.

Kristin
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Juneau on June 02, 2011, 05:48:46 AM
Pam

I hope you are doing better soon! You have definitely had your share of difficulties in the past few weeks. You are always such an inspiration for resiliency and knowledge.

You are in my thoughts.
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on June 03, 2011, 04:46:32 AM
Hi All

I feel like I've come back from the dead. I have been thru so much this past week with 4 days in ICU, 3 days on telemetry and 5 doctors taking care of me. I had Internal Med doc, GI doc, Cardiologist, Surgeon, and Infectious Disease doc. For 2 of the ICU days, they thought I would have to go to surgery.

Last Wed night or rather early Thursday, I went to bed about 12:30am. About 15 min later, I started having bad intestinal cramping. I got up to use the bathroom and collapsed at the foot of the bed. I was in excruciating pain and yelled for my son to come. He took one look at me and called the paramedics. Once they were there, I could hear one talking to my son while the other 2 worked on me. I remember they were trying to get a BP on me but were having a hard time. I kept saying I feel like I am dying. They said we have to get you to the ER, NOW. I could not tolerate being moved, the pain was so bad. All I remember after that was them trying to get IV's started. I did not wake up til I was going up to ICU. I found out my BP had been 46/32. I had an IV in my neck and groin area. My 19 yr old son, that called the paramedics, called 2 of his 3 other brothers , one 35yrs and 26yrs, to come to the ER. With my DH out of town in Boston, he wanted the older siblings to be making any decisions. DH was notified immediately.

In ICU they were trying to stabilize my BP. It didn't get above 90. I was also having bloody stools. The abdominal pain was terrible. My children were there in the ICU room, very concerned. I later found out that they all left crying that day because they almost lost their mother. The Drs were giving me 2 possible scenarios . One, it could be a horrific case of c-diff ( Jill) or I had an ischemic colon , where the blood supply was temp shut off from my colon causing a catachlysmic response and I went into shock. The c-difficile came about from the time I had it in 1994 from taking the antibiotic Clindamycin.They thought maybe it had lied dormant in my body. The Cardiologist said since I was being treated for atrial fibrillation, I could have dropped a clot from behind the heart and had it fall, occluding the blood flow to the colon. Several tests were done to the stool, including for c-diff, each one coming back neg. My GI doc said he would need to do a colonoscopy once I was stabile enough to do it. I spiked a fever of 102. I was starting to get septic. My husband got in from Boston at 8pm Thursday and came immediately to the ICU. When I saw him , I started crying, I was so glad to see him.

I had every blood test, culture, urine, stool testing known to man. I also had 2 abdominal CAT scans , echo cardiogram and xrays. I had a urinary catheter. My hemoglobin and hematecrit were very low and electrolyes were all screwed up too. They decided they did not like the IV line in the groin area because they needed to be able to roll me over for bedpan. So The Dr placed a PIC line in my right subclavian that would thread directly to my heart. They pulled the groin line and the one in the neck had been pulled earlier. I was too sick to pay any attention how it felt to get a PIC line. They now had one line with 3 ports to give meds, fluids, and draw bloods.

Saturday, I had stabilized enough to have a colonoscopy done in my ICU room. I had never had one of those before. I still had to have one of those ungodly enemas. Anesthesia came in and put me to sleep. NIce.......to be knocked out before they did anything !!  Dr took a couple biopsies. When it was over he said my colon looked like c-diff but it also looked like they ischemic colon with some dead tissue. Great, no deffinitive news , so would need to wait for test results. The biopsies would take several days. They were giving me dilaudid every 4 hrs thru the PIC line for the severe abd pain. That is such a funky feeling as it gets pumped out from the heart. I could feel it all the way down. That feeling lasted a few minutes.

The Cardiologist was talking to me when all the sudden I went into Atrial fib. Right in front of him. My heart rate was 180. He was asking for them to get something, when I converted back to a regular sinus rhythm . He said they were changing my anti-arrhythmic to a stronger one called ameoderone. I was not happy with this, it has lots of side effects. He assured me that it would only be while I was in the hospital and while me body was so weak. He wanted to put me on coumadin but, I do not want that stuff in me, so I said no. He also said he might do a T.E.E. (transesophageal echocardiogram). This device goes down the esophagus to detect whether there are clots behind the heart. Incase they thought this was caused by a clot dropping down.

The infectious disease doc came in discussed all the possibilties . They put me on IV vancomycin and flagyl until cultures, and other tests came in and since I had spiked a fever. The surgeon came in and after examining me, she said if my pain worsened, I would have to have surgery. This could be anywhere from just removing the dead tissue, to resecting the colon and worst case scenario, doing a colostomy. I broke my fever briefly only to get one again.

I was starving but wasn't allowed anything to eat/drink. I fantasized about scrambled eggs, grilled cheese and for some strange reason, cream cheese with chives and crackers. After 2 days, they allowed clear liquids. Broth never tasted so good ! The next day I had a real treat. A cup of coffee was on my tray. This was heaven. I am not a big coffee drinker but I loved smelling and tasting it. I told the doctor it was a small piece of normalcy. Sunday eve I got a boost to full liquid diet, but was short lived since that means products containing milk are usually added. I am lactose intolerant.

My Abd pain was very slowly decreasing. I made it thru the weekend with no surgery ! Monday I had improved enough to go out to the telemetry floor. The pain was still bad enough for the dilaudid ,but I had finally finished passing blood. My kidney function was back to normal so I was able to have the catheter removed and get my 2nd CT scan. I had to drink 700cc of lemonade flavored contrast. I'll never have lemonade again. Tuesday, might CT scan looked good and the biopsy report came back a final negative on c-diff. It was all ischemic colitis.

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001304/     My GI doc said it was the worst case he had seen, causing me to go into complete shock. Today, I was finally well enough to go home. I am on 5 new meds for awhile and will have to be patient as my colon heals. This means I am on a very limited diet for now. My family was always there in my room.......kids reporting off to the next one. I shudder to think what would have happened if I was by myself that night...............My son saved my life

Sorry so winded.........It's good to be home.  :D

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Jill M on June 03, 2011, 04:33:37 PM
Pam,

All I can say to that is OMG!!!!  :o :o :o

I have been really worried about you since you posted you were in ICU!!!! I knew that was NOT a good thing!

How scary for you, your husband and your poor son who had to call the paramedics. That goodness that he did and got you the the hospital quickly. He definately saved your life!

It sounds like your healthcare team responded quickly and kept testing until they found the cause and treatment. Even thought I am a healthcare provider all that you had to endure sounds very frightening and exhausting. Not only did you have battle sepsis, horrible pain, cramping, and bloody stools then you have to battle a reoccurance of your a-fib. I am not surprised that your heart started acting up with the intense stress that your body was under.

I am so glad to hear that you are home now and the pain is starting to ease up. Like you said, it will take time for the colitis to resolve and you will have to be gentle with your diet.

I will continue to pray for you as you progress on your road to recovery!

Jill 



Title: Re: Open Debridement and Proximal Z-plasty
Post by: KW on June 03, 2011, 10:34:47 PM
Pam,

I just want you to know that I am sending you positive vibes and ((HUGS)).

I've been reading you posts for the last few years and to hear of this latest struggle is heartbreaking.  You have been struggling for so long and now this.  Please stay strong!

Best Wishes,
Karen
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on June 04, 2011, 03:30:56 AM
Jill and Karen

Thank you so much for all the kind words and prayers. I'm not out of the woods yet. Didn't have a very good day and as weak as a kitten. I had to sit down to get ready after a shower, then layed down on the bed for 30 min after that, before making it downstairs

Keep sending your prayers.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Jill M on June 04, 2011, 04:54:11 AM
Pam,

Sorry to hear you had a rough day. I am sure you are extremely weak after your hospital stay. Just routine tasks will take all of your energy.

It will take time for you to regain your strength. Be kind to yourself.

I am rooting, cheering and sending prayers your way! You will get through this roadblock- you are such a strong woman!

Jill
Title: Re: Open Debridement and Proximal Z-plasty
Post by: kcknee on June 05, 2011, 07:02:23 PM
Pam-

I'm sorry you have been through so much recently. I'm glad your family was there for you the entire time.

I hope you keep getting stronger and feeling better. Do they know what caused this? Was it the new medicines you started taking?

Kristin
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on June 05, 2011, 11:39:28 PM
Hi Kristin and Jill

Thanks so much.  The past 2 days I felt like crap and ran a low grade fever. I was thinking I should go back to ER. Today was a little better and tomorrow is a follow up appt with PC. Dr.

They aren't real sure what happened. It's kind of like the chicken and the egg. Anyone over the age of 50, particularly women, can get an ischemic colon.....it just happens, however the Dr said the cut off of blood supply caused a catastrophic event with going into shock, or they said I had some sort of cardiac event that temp. cut off the blood supply to the colon. It was not related to any meds.  All my cardiac tests came back OK.

I'm almost done with the oral vacomycin. I also take this powder I mix with juice that is a "resin" that help bind your stools, 3x's day and Immodium. I couldn't take the immodium, til they were satisfied this was not bacterial.

Scary how this can happen out of the blue

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Jill M on June 06, 2011, 01:25:02 AM
Pam,

It is very scary that something like that can happen out of the blue. I am glad that all your cardiac tests came back negative.

I hope your fever resolves and your f/u appointment goes well tomorrow. Keep us posted and we will keep praying.

Jill
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Carolyn2010 on June 06, 2011, 03:02:20 PM
Hi Pam,

While I don't post on this board I come here often. Reading posts of frequent posters, I feel a connection so when a major
medical event is reported, I feel the same sadness as with a personal friend. I'm so sorry,Pam!

Sounds like you are receiving wonderful care and have a supportive family. The good news about your heart must have been a
huge relief. The tummy, on the other hand, is more mysterious to diagnose and treat. I know because mine is problematic
and I have to be careful of foods and medication... too much fiber, too little fiber; too much liquid, not enough. Always a balancing
act. I'm out of pain pills and don't see my doctor until Friday so I'm taking 4 Aleve a day, which really doesn't do much for pain but can cause stomach upset. I can't take Advil. Anyway, I don't want this message to be about me, but you, and to relay that you're
being thought of by me and many, many others that you don't even know. Hoping better days are ahead.

Carolyn
Title: Re: Open Debridement and Proximal Z-plasty
Post by: skibum9 on June 07, 2011, 02:56:35 AM
Hi Pam

Even though I don't post much any more, I still follow the threads of a few and yours is one. Pretty scary that something like this can happen out of the blue, so it's a good thing that you son was there to call 911.

Now could you just try and take it easy for a while. No wild and crazy medical episodes, just the routine stuff that is pretty boring to report on. So much so that we end up talking about out pets or something. Speaking of which, can you believe that it has been 2 years since I adopted that little kitten. She has grown up to be quite the little charmer. Awesome personality and definitely worth six trips to the shelter to find just the right one. Finally, even won over the heart of my fat boy and they are wrestling buddies. Still no cuddling, but everyone gets along just fine.

Take care,
Sharon
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on June 11, 2011, 01:57:49 AM
Hi All

Thank you for your continued prayers. I have had some good days and some days where I am still wiped out. My eating is getting a little more back to normal, without retribution from my intestinal tract. We had a dear friend come in the England this week. He was doing busineess in the U.S. and was able to drop by to see us. It was fun to see him as he is like a family member. I wish I was able to participate fully in his visit, but had to rest quite a bit. We had a BBQ at our house with all our kids who pitched in a did all the food. It was fun !  He left today to go back to England.

Had lab work drawn yesterday and results show my hemeglobin is low at 9.5 (down from hospital level of 12) and sodium low. No wonder I am wiped out and also cold ! They aren't doing anything right now and just want to check it again in 1 week.

Talked to my PT 2 days ago. They were wondering what happened when my son called them to cancel my session , when I was in ICU. He was shocked when I told him the whole story. He was so nice and said once I feel totally recovered, I could call and schedule more sessions. He would get another script from Dr Noyes. I thought that was great. I had reinjured my knee when I collapsed and it swelled quite a bit  while I spent a week in bed, esp in ICU. Since then it is very stiff and painful. Might have to make another trip to CSM.

Keep your prayers coming, it is helping !

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Jill M on June 13, 2011, 05:41:01 PM
Hi there Pam!

I am glad to hear that you are having some better days and were able to have a viist from your friend from England.

Hopefully your labs will be better next week when they check them. The low Hemaglobin does explain you being cold and exhausted.

I know you are worried about your knee as well but you have to heal your body first. We are still praying!

Jill
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Teresa_S on June 16, 2011, 05:47:44 PM
Pam,  I wasn't around for a month or so, thought I would check on you , when I got back from Disney World, a nd guess it was not a good time.  Hope things are going better now. I have fought that low hgb. , after a year, wanted me to see a hematologist, but it eventually got better. You must still have some micro blood loss.

Hope you are on the path to recovery.  Take it easy, thank god for family nearby.
 
Please do not let me come back in  a week or so and hear of more  complications.  I will be praying fo you. Teresa
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on June 17, 2011, 03:52:08 AM
Hi Teresa and Jill

Once again thank you so much for your prayers. Today was another blood draw so I am hoping the results will come back tomorrow. I'm anxious to know my hemeglobin and sodium level. They have me drinking gatorade ( G2 low cal)  most of the time plus I have to drink ensure or Boost for additional nutrition for now. Will be so glad to get my energy back to normal. Living the life of a sloth is for the birds  ;)


Yesterday(Wed) was PM doc. He shook his head in disbelief when I told what happened to me. I was able to get my monthly injections and nerve blocks. So far I am mostly numb and very little burning. So worth the little time I have away from this incessant nerve pain.

I was so nice to hear from you Teresa. You'll have to PM me about your trip ! I hope the next time you check in I haven't had any more disasters either !!!!  I promise  ;D ;D

Thanks again ladies  ;D

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on June 21, 2011, 04:58:21 PM
Hi All

I got my hemeglobin results back. I am now at 10.7 ,up from 9.4 , so heading in a positive direction. I feel a little stronger, esp in the morning when I get ready for the day. I don't have to sit and rest several times. I still get tired if I have to go somewhere and usually have to take a nap to recuperate.

Kids put on a surprise BBQ for DH at our house for Father's Day. They brought all the food, set it up and did the grilling. It was great fun and a total surprise !

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Jill M on June 21, 2011, 05:49:07 PM
Pam,

So glad to hear that your Hemaglobin is better. As it rises you will start to feel better and better. I remember after my osteotomy in 2008 my Hgb was 9.1 when I was d/c from the hosptial. I was not symtomatic ( to the MD's anyway) so they didn't want transfuse me but I sure felt weak and tired.

So glad you had a nice BBQ and family to do all the work! Hope you continue to feel better each day! I am still praying for you!

Jill
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on July 10, 2011, 12:29:49 AM
Hi All

It's been a while since I last posted. I saw my PC doc after the last blood draw. She is thinking of putting me on iron suppliments , but wants to wait til my colonoscopy July 8th. Saw Nephrologist July 7th. My potassium is 5.4 !!!! How, I don't know. I don't take in a lot of potassium enriched foods. They are going to do 2 more blood draws over the next few weeks. They are also checking my iron stores.

Yesterday was my colonoscopy. They had me doing the Moviprep the night before and again 3 hours before the test. It tasted horrible....a very salty sick lemon flavor. It was one liter in 1 hour then another liter of clear liquids  I found a forum for this and got some tips for the second round. I added some crystal light lemonade flavor , chilled it the night before, then chewed watermelon gum while drinking it with a straw. Some used a ginger ale chaser and others sucked on hard candy. That helped with the after taste, to get it down without gaging.  :P

My results of the colonoscopy were good except I have scar tissue where the dead tissue was. He said so far the scar tissue is laying flat and not causing any narrowing.  I am feeling almost back to normal. I still get tired at times and just have to veg for a while.

I think I can contact my PT and Cinci PT ( for a script) to get back to rehabbing my knee. It is stiff and patella is not moving as well as before my sickness. I reinjured the knee when I collapsed and it was swollen as a grapefruit with little movement while I was in the hospital. I am feeling a lot of crepitis above the patella and pain on the lateral side to below the patella. I will have to go back to Cinci, if PT does not help.

Thank you for all your prayers during and after my illness......it sure helped !

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on July 14, 2011, 04:22:11 AM
Hi All

Today I saw pain management doc. I had 12 neuroma injections and 2 blocks done. While I was there, the doctor wanted me to try an NSAID medication called Pennsaid. It is a topical FDA approved (2010) medication containing diclofenac (a.k.a. Volteran) and highly refined DMSO. DMSO has been used on horses. Apparently this was approved for use in the U.K. in 2000 and Europe soon after. It is an anti-inflammatory used mostly for OA. Since it is topical, the incidence of side affects , such as the ones with oral diclofinac, are minimal.

I was instructed to use 10 drops per area to be treated, four times a day. It absorbs fairly quickly and should see some improvement in a short period of time. There could be some minor skin irritation or dryness. Wash hands throughly afterwards.

He wants to see if we can get some swelling to go down and help with some degree of less nerve pain from the increase in swelling. My knee is swollen along with the last half of lower leg/ankle/foot. This has really ramped up the pain. He gave me several samples to try. I'll have to see if ins will cover it. I have a feeling it is expensive.

I wondered if any of the UK or European forum members have used this medication.

Here is their website           

www.pennsaid.com/

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: starpolisher on July 14, 2011, 07:33:08 AM
Dear Pam,

I feel I am so fortunate after I read all that your are going through!  I'm very sorry that you are having numerous and very painful problems!  All I can say is I do rely heavily on prayer.....I pray for everyone with all these complications....I specifically write down everyone's name......I know faith has gotten me through a great deal.  I am praying for you.....and I know that God is so aware of your suffering.  I really hope that you'll experience pain relief and peace! 
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on July 14, 2011, 05:38:06 PM
Hi Patty

Yes, I do believe the power of prayer. I believe it helped me get thru the very serious medical event, I just went through. Thank you so much for including me in your prayers, you are in mine too  ;D  I hope the ASTYM continues to give you pain relief and increased mobility. It's so nice to see how excited you get with the results.

Best wishes

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Jill M on July 14, 2011, 07:59:49 PM
Pam,

So glad to hear you are feeling much better and the gut is healing. The colonscopy prep is the worst!! I hope the scar tissue in your gut continues to behave and doesn't cause any futher issues!!!

I hope you can focus on getting the knee rehabed. I continue to have you in my prayers.

Jill
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on July 14, 2011, 09:39:38 PM
Hi Jill

Yes, I hope the scar tissue remains flat and does not start to constrict.  Thank you so much for all your prayers. They were instrumental in my recovery !

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on July 17, 2011, 04:57:57 AM
Hi All

Got a call on Friday from the nephrologist's nurse. My iron stores test came in pretty low. I am at a 10 , when normal is 15-50. So I have to get an IV boost of iron in 2 doses , 3 days apart, to be done 1st wk of Aug. Then I'll be on oral supplements for a while.

I've been in contact with Dr D , the peripheral nerve surgeon. I brought him up to date on the nerve pain , knee, ankle, etc. We are shooting for surgery around the end of October. First, I have to do my foot surgery around end of Aug/early Sept. I've been trying get back with Dr D since he did surgery in 2009. 3 ankle fusions have put this follow up off for close to 2 yrs. I never get back for my post op visit because of the ankle fusions.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Jill M on July 18, 2011, 07:13:51 PM
Pam,

Sorry to hear your Iron levels are low. Hopefully the IV Iron infusions will get things back on track.

I will be praying that th efoot surgery goes smoothly so you can get back to see Dr. D and get things back on track and hopefully alleviate some of your awful nerve pain.

You are such a trooper. Your strenght inspires me!!  ;) Hang in there!

Jill
Title: Re: Open Debridement and Proximal Z-plasty
Post by: starpolisher on July 18, 2011, 10:15:16 PM
You sure are a trooper, Pam!  I pray that you will continue to improve and your pain will be greatly lessened!  You inspire me with your courage, Pam.  Hugs! :-*
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Teresa_S on July 20, 2011, 02:59:35 AM
Pam,DMSO should not be expensive, it has been around for a long time.  It used to be one of the drugs they combined and then instilled via a urinary catheter for Interstitial Cystitis. They would put the meds in and then tell the patient to hold it and not void for an hour or so.  It was supposed to help with the extreme inflammation and irritation of the bladder. FYI  Hope things are looking up, and hate to hear you are havig to paln more surgeries. T
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on August 02, 2011, 04:33:47 AM
Hi All

Tomorrow I go for my first round of IV iron infusion. From what I have read, I'm a little concerned. I was told it would only take 1 hr , but I've read anywhere from 4 hrs to 8 hrs. It is highly anaphylatic.......several have had anaphylaxis on the sites I visited. I don't know if those are good enough odds for a 1%er ....Plus the side affects aren't too pleasant either.

I hope this goes well and is worth it. Wish me luck  :-\

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Juneau on August 02, 2011, 07:19:13 PM
Pam,
Good luck with the procedure. Hope you can listen to some nice music and relax during it!  :)
Title: Re: Open Debridement and Proximal Z-plasty
Post by: starpolisher on August 02, 2011, 09:29:42 PM
Oh Pam,
You don't deserve that.....no one does!  I will pray especially for you today.  My son has numerous food allergies and I've had to inject him with epi pens......    My only comforting words are you will be in the hospital and if it happens, they can stop it, but it is still a miserable feeling afterwards!  I have literally had some really stupid people say, "well your son carries an epi pen" without even thinking the horrible feelings and exhaustions stopping anaphylaxis causes.  And he has panic disorder!  God bless and protect you dear Pam.  May He surround you with angels.  I pray that will not happen.
Title: Re: Open Debridement and Proximal Z-plasty
Post by: kcknee on August 02, 2011, 10:55:24 PM
Good luck tomorrow.

I hope everything goes well and that it does only take an hour. Write in when you can to let us know you are okay.

Kristin
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on August 02, 2011, 11:00:29 PM
Hi Ladies

Thank so much for your prayers and encouragement.  ;D  I just got back from my infusion. It took a little more than an hour. I brought up all the information I read about. The type of iron that was used on me is new and does not have the high incident of anaphylaxis like the other IV iron types used. The one used on me is this:

http://www.medscape.com/viewarticle/715178

So far I am doing fine. I still need to monitor for side affects, such as Nausea and vomiting , diarrhea, joint pain, chest pain, tightness, and shortness of breath. I think I will be OK. My DH was there and I had a TV and brought my IPad. I sat in a recliner while it was done. Friday is the next dose.

For the past 2 days I have been experiencing intense nerve pain to the area where the doctor injects just below the knee for a nerve block to the lower leg and foot. I hope I am not developing a neuroma there from all the monthly injections ( for 2 yrs). I see them on the 16th. I've had to increase the pain meds and using a lidoderm patch there too. Makes getting to sleep even more difficult.

Still need to schedule surgery for my ankle with the fusion.

Thanks again ladies !

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Jill M on August 04, 2011, 04:49:28 PM
Pam,

So happy to hear that your IRON infusion went well!!!

Sorry to hear you nerve pain has increased!  >:(  Praying that you are not developing a neuroma.

Jill
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on August 04, 2011, 10:29:10 PM
Hi Jill

Thank you  ;D  Tomorrow is the second infusion of Iron.  :P

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: starpolisher on August 07, 2011, 01:16:14 AM
Dear Pam
Relieved that the infusion went fine!  Not happy to hear about that awful pain in the knee!  I want so badly to come on this forum and read that your are finally getting pain relief in some form!!!!!!!  you are incredibly brave but I know it's got to be incredibly hard and physically and emotionally painful.  Sending hugs, Patty
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Jill M on August 09, 2011, 04:22:37 PM
Pam,

Hope your second Iron infusion went well. Maybe you will be struck with a rush of energy when you get your stores back up! LOL  ;)

Jill
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on August 09, 2011, 05:41:50 PM
Hi Patty and Jill

Than you both for all the kind words. The second infusion went well, no reactions. I saw PCP yesterday and told her I really didn't feel any different. I had a CBC drawn so I'll see where my Hemeglobin is at. She felt I could go ahead and schedule my surgery in Sept. on my foot/ankle.

Saw my cardiologist for follow-up per my hospital doctors request. They felt there was some sort of cardiac event that led to the ischemic colon. However, the hospital cardiologist did not send his letter to mine , like he said he would.  >:(  They only had records from the hospital. My cardio did not have any answers, so it was a waste of time.

Next week is pain management. Can't wait, this increase in pain is difficult.

Pam

Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on August 11, 2011, 12:21:39 AM
Hey All

I have a date for surgery. It will be done Sept 7th. I can't wait to take care of this problem.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: starpolisher on August 11, 2011, 03:53:54 AM
Dear Pam,

The very best of luck to you!  I really hope, with all my heart, that you can be helped.  You've been going through so much........by the way, am going to check with my therapist and see if astym can be done on patients with RSD.  Facebook is quite busy with so many of the people who have posted here now over on Facebook, posting.  I will post that you are having surgery for your foot/ankle on Sept. 7th.  I am so glad no reactions to the infusions.  I hope pain mgt. can be of help, dear brave Pam.  God bless you! 
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Jill M on August 15, 2011, 03:27:08 PM
Pam,

Glad to hear you have a date for surgery. I know you will be glad to have that behind you.

So frustrating that you f/u with the Cardiologist as directed and they didn't send the necessary information!

I hope you get some relief this week with you pain management appointment.

Keeping you in my thoughts and prayers!

Jill
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on August 15, 2011, 05:51:27 PM
Hi All

Thank you Patty and Jill for all the supportive comments you post.  ;D  I have good news to report ! I got my blood test results back and my hemoglobin is back in normal range at 12.7. Normal limits is 12-15, so I finally made it. I guess the iron infusions helped.

Tomorrow is pain management appt. I'll post on that tomorrow.

Life is good................................................. ???

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Teresa_S on August 16, 2011, 03:52:40 AM
Pam, at least maybe tomorrows apt will bring some pain relief. cannot believe you off to another surgery. Bet you will be happy to be done with that.  Glad to hear the fe is up and so no more infusions.  I will pray all goes well for the next few weeks and you are soon recovering from the surgery. Teresa
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on August 16, 2011, 10:29:03 PM
Hi Teresa

Thanks for all the support  ;D  This foot problem is getting out of hand. It happens several times a day and feels like I broke something when it happens.  :o

Today was pain management. Told him about the increase in pain and total lack of sleep from it. He has increased the percoset and is having me try a compounded creme that contains 10 medications. This is made by a compounding pharmacy. It has:

Ketamine- for anesthetic
Gabapentin-for neuropathic
Cyclobenzaprine-muscle relaxer
Lidocaine-anesthetic
Verapamil-reduce scarring
Clonidine-improve circulation & neuropathic
Imipramine-trycyclic for neuropathic
Mefenamic acid-NSAID
Orphenidrine-muscle type relaxant
One other med starting with the letter M

I'll apply it 3-4 time a day. This should be interesting to use.

Pam

Title: Re: Open Debridement and Proximal Z-plasty
Post by: Jill M on August 17, 2011, 10:37:47 PM
Pam,

Glad to hear you Hemaglobin is up! Now we just have to get the foot problem fixed and the nerve pain back under control.

The compounded cream has a lot of medicines in it! Whatever it takes- I sure hope it works! Keep us posted.

Jill
Title: Re: Open Debridement and Proximal Z-plasty
Post by: kcknee on August 18, 2011, 03:56:29 AM
Pam-

It's good to read that you have had some good news recently. It's great that your hemoglobin level is back to normal. I hope that means you won't have any more iron infusions for a long time, if ever. It is good that you do not have too long to wait for your next surgery. I really hope that goes well for you. I'm not happy to hear that the pain has increased and hope that the new medicine is helping.

I hope things keep getting better for you.

Kristin

Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on August 19, 2011, 02:51:53 AM
Hi Kristin

Thank you so much  ;D  Today my compounded lotion was delivered to me. I hope this helps. The pharmacist from the compounding pharmacy said they had never put in this many meds before !

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Teresa_S on August 25, 2011, 06:06:25 AM
WELL????????????????? Is the compound working. I did not know that some of those meds had topical properties. Did they just dream it up or has somebody else actually used it before? You have not posted since, so I thought I would ask.  Summer over kids at school, and all I get done is mow the yard over and over.  I have really been having issues with my leg from thigh to calf, and now must, once again, go in search of a new physician to try to be able to keep wallking. Hope to hear from your before your next surgery. Teresa
Title: Re: Open Debridement and Proximal Z-plasty
Post by: starpolisher on August 25, 2011, 09:03:19 PM
Good luck Pam....happy you had some good news! 
Re the RSD.....I sent an email to Astym directly.....on their home site there is a link to click on (medical professionals).  When you click on that there is another option that says contact us.  when you click on that you can email them.  I emailed them with several questions and a therapist by the name of Sue Stover got back to me both times the very next day.  She said some people with RSD can have astym....it depends on how severe it is.  She seemed to indicate a test area is done....and the odd part is people with RSD who aren't in the highest range or have the worst case, often tolerate it better than PT.  It sounded like if you can't tolerate anything, like a sheet, on the area, then people have been able to have astym; she said it can even improve RSD symptoms in some cases.  It's not an issue with me so I suggest anyone with RSD email Astym directly and tell them about your unique case and symptoms for the best advice. 
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on August 26, 2011, 05:11:59 AM
Hi Teresa and Patty

Teresa

My pain management doctor created this compounded med just for me. It came from a compounding pharmacy in Alabama. I am happy to report that so far, after using this med 4 times/day for one week, the burning pain has lessened about 50% in the knee and about 20% to the distal tibia and foot. The needle like sticks have lessened some too. The deep throbbing I have, esp from the 2 new areas of nerve pain, have not been touched. I'm just happy to have some of the burning pain gone. I will take anything !!!  Burning 24/7 is horrible. So far, I am happy with this medication.  ;D It has everything but the kitchen sink.lol

Patty

That's great people with RSD can do Astym. I can't do astym, I have nerve damage and multiple neuromas. If I went thru that, it would send me to the ER for sure. Thanks for asking about it though.  ;D  I'm glad you've had positive results from it. I hope it continues for you !


Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Jill M on September 01, 2011, 09:28:04 PM
Pam,

I am so happy to hear that the compouded topical medicine has had such a impact on your pain! It's about time you got some relief!!  :)  :)

Jill
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on September 03, 2011, 03:46:34 AM
Hi Jill

Thanks so much  ;D  Some days the medications effects are less, but I still like the medication. My ankle/foot surgery is in 5 days, so I may not feel any benefit because of surgery pain.  :(

Patty-

I found out one of the PTs in my facility does astym...haha...about 5 min away from me.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on September 07, 2011, 02:57:17 PM
Hi All

I leave in a few minutes for surgery on my foot/ankle. Will be going home afterwards.

Wish me luck  ;D ;D ;D

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: kcknee on September 07, 2011, 03:04:08 PM
Good luck today!!!

I'll be thinking of you and wishing you a fast complications-free recovery.

Kristin
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Juneau on September 07, 2011, 06:50:13 PM
Pam,
Wishing you all the best for your surgery as well! Have a speedy recovery!  :)
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on September 08, 2011, 01:55:36 AM
Hi Kristin and Juneau

Thanks for the well wishes for my surgery today. I made it home a several hours ago, all in one piece...haha. ;D   Surgery lasted 1 1/2 hrs. I had a torn tendon after all. He removed the plate a screws from the calcaneal cuboid joint fusion and removed the implanted bone stimulator as well as repairing the torn peroneal tendon. Don't know which one, the brevis or longus. I am in a back slab cast, all padded up and have a drain . I'm not doing too bad with pain as I have a popliteal nerve block, local anesthetic , oxycontin, and percosets. The 24-72 hrs will be the worst. Still draining bright red blood. The drain will be in 2 days. I go back to Dr on Sept 22nd.

Anyway.....the toes above the nose for now  ;D

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: starpolisher on September 08, 2011, 07:40:20 AM
My very best wishes, Pam....that the surgery will provide much deserved relief.  God bless and comfort you. 
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on September 10, 2011, 11:27:57 PM
Hi Patty

Thank you for your reply. It was so sweet.  I am 3 days post op now. All the blocks have worn off and the pain is here. Taking the pain meds regularly. I was told the drain stays in 2 days. Well, after calling the office, they asked the doctor and I was told DO NOT REMOVE IT ! It is stitched in !!. I am still draining bright red blood anyway. It looks like the drain might be staying in til my post-op appt on the 22nd. Been keeping my foot up....toes above the nose,

During this time, our sweet, little, black and grey dapple, miniature dachshund, Jake, (of 11 1/2 yrs) died while being treated at the vet yesterday. He has had congestive heart failure for 6 mos and had gotten worse overnight. We are heart broken to lose him. He was a Valentine's Day present from my husband, back in 2000. We fell in love with mini dachshunds and got another one in 2005. They are such clowns and full of love. His name is Copper. He is a red dapple. He is lost without his buddy.

Jake was a special little guy  :'( :'( :'( :'( :'( :'( :'( :'( :'( :'( :'(

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: kcknee on September 11, 2011, 02:35:47 AM
Pam-

I'm glad to hear that you are home and that the surgery went well and there didn't seem to be any major complications. That seems like a long time to have the drain in. Hopefully it helps with swelling and inflammation. I also hope the pain killers start working a little better.

I'm really sorry to hear about the loss of your dog Jake. I know how hard it is to lose a pet that you care a lot about. Make sure you give Copper a lot of extra attention and love to get you both through this loss.

Kristin
Title: Re: Open Debridement and Proximal Z-plasty
Post by: starpolisher on September 11, 2011, 09:49:19 AM
Oh Pam

doesn't it seems like when it rains it pours sometimes?!.....too many times!  I sure hope this surgery will be a real help for you and sad that you are mourning the loss of your precious Jake.  I'm going through a lot with my son with his health and hoping we finally found a doctor who can help him.  After all, I NEVER thought I would find anything that would help my scar tissue problem and yet I have improved from this treatment so much!  I am also luck to live in an area that has Astym!  Maybe we'll be fortunate and this doctor will be able to help my son.  It's like the Astym.....after a lot of trials and tribulations, you are afraid to get your hopes up and still find it hard to believe how much it's helped.  but my son has been ill for over 10 years and from birth had awful allergies.  Well this doctor is supposed to be good and we'll see.  Afraid to get our hopes up....just like with the knees.  After all the times of getting your hopes up, you stop hoping.  I haven't really with my son....but am quite nervous.  He'll be 23 in Nov. and doesn't have a license yet.  Struggling with fatigue badly now....I had similar issues and got over them....but not nearly as bad.  All this illness has been exhausting and our nerves are shot.  I go up and down like a yo yo.  I sincerely hope that you will come out of this operation with success!  Many blessings, Pam!!!!!  God bless you!
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on September 14, 2011, 02:43:09 AM
Hi All

Yesterday got a call from ankle OSs office. They decided they didn't want the drain to stay in my foot till the 22nd, so they had me come in today to get it removed. This was the first time I saw the new building the orthopeadic is in. New building didn't change the wait time. It took 2 hours just to get into an exam room. After cutting thru all the layers of ace wrap, soft roll, plaster and gauze , my foot was revealed. I didn't expect to see the extensive amount of incision this time around. It was just as much, if not more, than for the fusion. The doctor snipped the suture holding the drain, then he pulled it out. There was about 6 inches pulled out of the incision. OUCH!  After the bleeding stopped, fresh dressings were applied, then I was taken to the cast room. There were several colors to choose from. This time I picked yellow. I've already tried the colors of red, green, purple and hot pink.  The actual color was a little different from the color on the wrapper. This yellow is a neon yellow ! I look like a human road construction cone !! lol   This will stay on til I see the Dr again on the 22nd. Then I'll get another cast or go into the boot....again

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Jill M on September 15, 2011, 02:22:18 AM
Pam,

Sorry I have been MIA for a few weeks. I am so glad to hear that the surgery was sucessful and you are on the road to recovery. I am sad to hear of Jake's passing. I know that he had been sick but that doesn't make the loss any easier!  :(  I hope that Cooper is hanging in there.

I am glad that the drain was removed sucessfully! I have a visual of your bright yellow cast! At least people will see you coming! LOL

Keeping you in my thoughts and prayers. I am so happy that things are moving foward for you. You have had one too many roadblocks in the road!

Jill
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on September 16, 2011, 03:47:20 AM
Hi Jill

Thank you so much  ;D  Copper is still lost without his buddy. When we put him in his crate while we are go out, he just howls and cries. We tried placing a stuffed toy dacshund in front of the crate ( where Jake used to sit) and then adding a radio in the room. The gal who cleans my house said it about made her cry,to hear him. I hope he gets better with time.

Today was pain management. I told him I thought the compounded lotion was helpful in decreasing some of the burning pain. You definitely need to do 3-4 applications a day to feel the affects. We went over my surgery and pain control. He brought up trying a massage technique using tools for breaking down scar tissue. I posted this in a separate thread titled SASTM. I got my monthly nerve injections and blocks with spinal marcaine , which is stronger than lidocaine. I had 15 neuroma injections and 1 block this time. My cast covered one of the block injection points. Yea! for pain relief!

My neon yellow cast has attracted lots of comments ...hehe  :o

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on September 29, 2011, 04:25:55 AM
Hi All

Yesterday was 3 weeks post op from foot surgery. I got my bright yellow cast cut off. I actually got to talk to my surgeon instead of the new Partner. I had a torn brevis tendon which was repaired and the longest brevis was augmented. I had a sesmoid bone imbedded in the tendon which was somewhat unusual but I also had one behind my knee, the fabella, which had to be removed too. My OS found that pretty interesting. He felt it's location may have caused some catching I was having. He asl said he removed the plate and screws from the calcaneal cuboid joint and one of the large screws going thru my foot. He also removed the implanted bone stimulator. I had xrays taken which were OK and then had stitches removed....lots of stitches. It was extremely painful because the knots were embedded in the skin. Talk about major OUCH ! This in turn really aggravated nerve pain in my foot, to new heights. I feel like I've had acid poured over the top of my foot.

I am back in a boot. I had to get a nice new one because I wore the other one down after wearing it for 2 yrs straight. I was told it would take about 6 more weeks for the tendon to heal. Kind of like a broken bone. I have to wear the boot 24/7 for 4 weeks NWB , then gradually increase PWB-FWB, wean out to brace, then shoe. He gave me a script for PT to begin in a couple weeks. I'll see him back in 6 weeks.

Nerve pain can drive you crazy !

Pam

Title: Re: Open Debridement and Proximal Z-plasty
Post by: starpolisher on September 29, 2011, 06:00:55 AM
Dearest Pam,

You sure are going through so much......it seems so terribly unfair!  I wish they could give you some sort of med or implant to numb those daxxed nerves that are causiing you so much pain.  I had a wonderfu pain mgt. doctor at HSS in NYC....David Wang.  A woman from SC came all the way to see him for help.  She looked as if she were dying!  I remember how I thought "i've never seen anyone in such pain"......I asked her how she was doing....just so worried about her.  She then told me she had lost 50 lbs in a relatively short time from the pain she was in!  She told me she was literally dying from the pain and came up from South Carolina because she heard Dr. Wang was so good!  He saw her before me and I asked him if he could help her.  He said he could!  I believe he was going to implant something in her (sounds like you?) ..... but he seemed pretty confident.  I know he kept me out of so much pain when I was having those knee operations and my hospital rehab!  Plus he was so incredibly kind and caring.  I loved that doctor!  He was in the right field!  So compassionate. 
Hugs, Patty
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Jill M on September 30, 2011, 12:40:09 AM
Pam,

I have been thinking of you. I haven't logged on for awhile. I am in St. Louis with my Dad. He has metastatic prostate cancer and is doing poor. We have called in hospice.
Sorry to hear that you are still in pain. I will continue to pray that you have some relief.

Jill
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Juneau on September 30, 2011, 01:27:29 AM
Pam,
I am sorry to hear that you are in a lot of pain now after having the stitches removed. But it must be nice to have the cast removed and to be back in your boot even though it probably does not look as cool as your yellow cast.

Hope you get some relief from your pain real soon!!!! Maybe you can pamper yourself the next few days.
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Teresa_S on September 30, 2011, 04:47:51 AM
Hi Pam, good old recovery and post op again. I do not envy you. I am so sorry about your dog. It is so had to lose them , when you have had them so long, and they really are a part of the family. Looks like a new one may be in you future. Perhaps a rescue. We have had dapple minis for sale on an area shop here in KV. I gripe  about the responsibilities of my 3 all the time. I have to take them out separately. And that is time consuming. Hoping for a speedy recovery for you . T
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on October 01, 2011, 05:12:01 AM
Hi Ladies

Thank you so much for your replies  ;D

Well, pain levels are not improved  >:(  They went up after surgery , but after the suture removal, unbelievable. I've tried all my meds, lidoderm patches sometimes for 24 hrs, and new compounded lotion. I see pain management next Wed, so I hope something can be done. It's out of this world.

Patty
Your Dr Wang sounds like a wonderful pain management doctor. I'm sure you miss him.

Teresa

Nice to hear from you ! I miss my dog and our other dog is still upset. It is so sad. We checked rescue , pet adoptions, shelters, craig's list. We went to a pet adoption today, but not what we were looking for. We prefer a dog (mini dachshund) that has grown out of the puppy stage. We found a promising ad on Craig's list. We are hoping to hear back from them. Fingers crossed !

Pam

Title: Re: Open Debridement and Proximal Z-plasty
Post by: starpolisher on October 04, 2011, 07:25:49 AM
 :'( Aw Pam,

So very sad that you are hurting so much.  It's been a bad few days....very exhausted and feeling weaker than usual and my lips are so sore....little hives, very sore....I notice when I wake I often have patches of sore skin.  What gives?  All the years on morphine?  I see my pain doc once every 3 mos.  I had cut back on my morphine by one pill .... when I saw her I had questions and she was in a rush...late for a meeting!  I was annoyed....she wrote a smaller script for one of my pills (short term morphine) but said don't go down anymore...not when you're having therapy.  I am having so much trouble with sensitive skin, being so hot and sweating off and on, and finding the right mix of meds for constipation. The later was all she addressed.  Not sure why I feel so weak this past week....I am taking a break now from the Astym....following day am often tired.  Husband going out of town for train show (he goes twice a year) and to see his mom afterwards...will be gone for 9 days and always get nervous....,my son can't drive and he has his health issues.  Just don't like how I feel.  I feel very vulnerable when he leaves but especially now, the way I feel.  So down...like I feel I will never really feel healthy again.  I'm venting.....I should be ashamed of myself because after all you are going through so much, Pam. 

I got up the nerve to tell my husband he may not be able to go as I am feeling weak and just not good......so stressed and worried.  He's now in a really bad mood and I told him I had to tell him how I felt....I'm afraid!  This is the part I hate about being left with a son who also isn't healthy.  I do my best and usually say nothing but feel like I'm reacting to a med or something....not sure.  I am so upset with him.....I know it's hard to be the caretaker but he always goes twice a year and we never go anywhere because we can't and we deal with it.  I think he's being very selfish.  He has no idea how I feel.  Will see pcp on Wed but don't know what she can do.....will call my pain doc.  Talked to my RN friend and she said could be thinning skin from age (63).  I went on a site re longterm morphine use side effects....scary!  I usuallly say nothing and keep my nervousness inside.  This time, because I felt so weak and odd today and actually since Sunday.....now he is having temper tantrums!  As if I don't have enough on my mind.  So down....sometimes life is the pits.  Pam, I know you must be feeling really lousy......I hope you have emotional support.  It is hard when you live in a place where you don't know many people.....just starting to know some casually.  Because knees have prevented it.  If I had family or friends here....I wouldn't be so edgy about his leaving me feeling like this or if my son could drive!  Just so hard.   :'(  Anyone been on morphine 5 years or longer?  I shouldn't have read the side effects (long term) use of morphine but this has always been my doctors' orders!
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on October 08, 2011, 04:00:00 AM
Hi All

Wed was pain management. Told the Dr about this astronomical nerve pain in my foot since suture removal last week. It is so bad it makes my eyes water ( not tears) ! I've tried everything I have but it does not help. He is hoping it will subside soon, since it increased from the suture removal. There wasn't a whole lot to offer. He mentioned there was a new PM doc in the area he met at a PM conference in town. This Dr has developed a low temp radio frequency ablation technique. Using a low temp to destroy the nerve without damaging the mylen sheath. He thought it might be worth a consult with him. I told him I was considering seeing Dr Susan Mackinnon in St Louis. She is a peripheral nerve surgeon who trained under Dr Dellon , wrote several research articles with him and many, many on her own. Her name was given to me by the Fellow, who was starting his fellowship with Dr Noyes, when Noyes gave me the name of Dr Dellon. Since Dr Dellon does not take ins., it is just impossible to have cash to pay when I have great ins and met my deductible. I would like to get this done before my ins yr ends Dec 1st.

After all discussion and options, such as spinal chord stim ( that comes when I throw in the towel) we proceeded with my monthly injections and nerve blocks. Unfortunately it did not touch the foot pain.  >:( >:(

On a happy note, we now have a 7mo old puppy. She is a mini dacshund/ yorkie, called a Dorkie.....seriously ! She is black and tan and has large ears that look like a bat ! She is the most affectionate dog I have ever seen. We got her from a Dacshund rescue. It's taken about 3 days for our other dog to fully accept her , so there were no tiffs today. She is a real character and fun to watch her wrestle with our other dog. Just what he needed.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: starpolisher on October 09, 2011, 06:26:09 AM
Dear Pam,
Read this after I sent the post and my gosh......it's unbelievable the pain you're in!  I think of that one woman in the office of my pain doc in NY......I just had to look at her.  I think of you.  I remember how worn out I was from my AF pain before the Astym!  But it sounds as if yours is much  worse.....can't even find a position for comfort!  Oh Pam......I pray you will find something that will give you great pain relief!  I pray many healing angels will visit you and help you!  Sometimes you feel like it takes a miracle when it's bad!  Many hugs......so sorry dear Pam.  xxooxxxooo Patty
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Teresa_S on October 10, 2011, 06:57:37 AM
Congratulations on the new puppy, I have seen the dorkies, and think they are really cute. Has it been named yet?  I often wonder about people who get a puppy and then it ends ups in rescue?  Sorry about your pain, have they come up with anything to help yet?  I often wonder if drs had the  pain, we would have much better relief, or options for relief. I, too, feel it is ignorant to be asked for cash when insurance pays. Ours paid every cent of the air amblulance for G when he was life flighted over $28 000 for a 30 minute ride.NO disallow, could not believe that, but then they paid the $900 to take him from the bldg. to the parking lot in full also.  BC BS even told us he should get any elective surgery done before the first of next year. Hope you are feeling better by now. Enjoy the new family member. T
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Jill M on October 11, 2011, 04:38:39 PM
Pam,

So sorry to hear about the awful pain. The doctor in St. Louis sounds like a potential option.  It is sure closer than Dr. Dellon and she takes insurance.

Congratulations on your new puppie. She sounds really cute. What is her name? I am glad to hear that Cooper accepted her.

I will continue to send prayers your way for improvement in your pain.

JIll

Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on October 12, 2011, 05:39:05 AM
Hi Guys

Thank you for asking about my new puppy. Her name is Sadie. That's the name she already had and knows it quite well. The 2 dogs are becoming good friends, sleeping and playing together. She is quite the attention hound and is doing really well with potty training. The little neighbor kids like playing with her.

Yesterday was an appt with my PCP. She asked me about my pain levels. I told her how this nerve pain is just thru the roof and I would like to cut the leg off or strip every sensory nerve from the leg. I told her I was in the process of weaning down from the oxycontin I was prescribed from surgery. I told her I had started weaning a few days before my sutures were removed, which kicked the nerve pain up to the thru the roof levels. She does not want me weaning down, she wants me to go back to taking it twice a day, since I am having this much pain. She wrote me a script for refill.  My kidney function levels have improved , so I can also go back on Celebrex. My kidney function really suffered from going into shock from the ischemic colon in May. I also told her about my plans to see the Dr located in St Louis.

Today, I got a surprise call from my PM doctor. He was talking about my case with a Dr friend who practices at the same hospital as the St Louis Dr. First they talked about the radio frequency ablation technique this new local Dr was using and decided that it would not be right for me. This Dr friend had very good knowledge and opinion about her. He said she was basically a brilliant nerve Dr and peripheral nerve surgeon for me to see. I told my PM Dr I left 2 voice mails to get an appointment and had not gotten a reply yet. He said he would call her as a direct, Dr to Dr referral. I said that would be great !  I hope this all works out !

Tomorrow is PM shrink  :P

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Teresa_S on October 25, 2011, 02:39:28 AM
My baby Dane is Sadie, also, WHERE ARE YOU?  Pain any better
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on October 26, 2011, 05:38:57 AM
Hi Teresa

Haha...both Sadies, but quite the opposite in size !  ;D ;D ;D  How is your Sadie doing?

Today was my first day of PT on my foot/ankle. Didn't do much but some mild stretches with and without a thereaband. This stirred the nerve pain to very high levels at 9am. My leg, knee to foot, is covered with lidoderm patches and all meds on board. This is going to be great for the next 4-6 weeks.

I got a copy of the letter my PM doc is sending to the nerve doc in St Louis. There were a few corrections that needed to be done, so I called them to let them know the corrections. The letter should be sent this week since my doc is back from vacation. I was hoping I would see her and have treatment done before my insurance yr is over Dec 1st. I see PM doc again on Halloween.....how fitting !

We are the proud grandparents of a new grandson ! His name is Jack , he was born Oct 14th. He weighed 9lbs 7oz  :o and it was a home birth  :o :o. That makes 9 grandchildren for us.

Pam

Title: Re: Open Debridement and Proximal Z-plasty
Post by: starpolisher on October 26, 2011, 11:20:48 PM
Congratulations Pam!  ;D 9 grandchildren!!!!!!!  It's nice to have a large family....do they live fairly close by?  I am sure they must give you much joy.  Nice to hear something really wonderful happening in your life.   Very large baby... :o....you sure have a very brave daughter!  I am sorry to hear you're in pain.  I had a reaction to a med (not related at all to my knees) but lots of fluid and in the legs.....MISERABLE....so stopped the meds and knees back to normal though one is somewhat sore.  My PT and I are thinking of an Astym rest for the rest of the year and just do exercises at home and see how I do.  I still have scar tissue but not making any and it's a nice rest for my body.  I can always resume sooner if I need to.  Still don't know where I'll eventually wind up, but I am doing well so far.....been almost a month since I've had an Astym treatment.  I hope your pain really eases. 
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on October 27, 2011, 05:02:00 AM
Hi Patty

Thank you for the congratulations ! All 6 of my kids live in the same area. Some in neighboring towns but all within 10-20 min drive. It was my Son and DIL who had the baby. It was their 7th.  :o  The last 2 were home births ( planned).

Today the pain is a little less. I have Friday's PT to look forward to and the subsequent unbearable pain afterwards.

Pam

Title: Re: Open Debridement and Proximal Z-plasty
Post by: Teresa_S on October 28, 2011, 03:59:01 AM
AND your CHristmas list grows!! Congratulations, that was big baby, Is she the one who had the twins?  How many more do you think they will have? I remember I wanted to have a water birth with my second and everybody thought I had LOST MY MIND, there was nothing like that around our little town. ALTHOUGH, all it would have tekn was a pool to be set up .

I hope things start improving for you. My sister and I have been walking 2 miles a day for about 8 weeks or so now. It really does not seem likeI havegottenany stornger,or improved anything!!!!!.  My Dr said that it was good and to continue to do so, but the damp  and cold have made both my knees hurt and ache so badl I am up all night.  Cook told me years ago I needed the right knee and hip replaced, but chances fo that are pretty much NIL. My present dr thinks I would not be walking at all if I did not   make myself do  so much yard work and so forth. MY mums are huge, and really beautiful right now, but they will soon freeze, 

Sadie is definitely bigger than your Sadie,by about 150 pounds!!!Thank goodness she is a couch potato.  I  would take her on the walks but she does not like to get in the car. Tami, my sister, has taken her husky a couple of times but he is young excitable, and pulls alot.

I really hope you find somebody and some treatment that helps inSt Louis.  ENOUGH IS ENOUGH!! Which is what I am thinking about the WORLDSERIES right now. Cardinals really need to THINK and get excited and RALLY   
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on October 28, 2011, 05:44:53 AM
Hi Teresa

Yes, the Christmas list grows ! I already set the kids at 2 child size tables for Thanksgiving and Christmas dinners. She is the one that had the twins. They are 3 1/2. They used the pool for the 2 home births. We saw them this eve. He is up to 10lbs now, just a little chunk to hold. We couldn't quite grasp doing it that way and would have preferred the hospital, in case something went wrong.

I'm glad to hear you are out walking....I'm jealous  ;D  Just think of all the other areas of your body benefiting from all that walking. I never got my bulbs planted, once again. Just not in the cards this year.  >:(  Your garden always sounds lovely . I never have luck with mums, they get so leggy even though I pinch them at the right time. I wish I could get them thick , like the ones you buy. We had a hard freeze last week so my impatients were lost.

Thanks Teresa. I really hope I can see this doc in St Louis and hope she can help me. Our ins will change from BCBS to United Healthcare Dec 1st , but looks to be a good plan.

Take care Teresa and Happy Halloween ( I know you do Halloween up just like I do ...haha)

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Teresa_S on November 05, 2011, 07:30:54 AM
Hi Pam,  Well Halloween is  over, I have a "arrangement"of different gords, pumpkins, flowers, etc in my wheel barrow, with a small wooden wagon, with 2 HUGE mums, and a wrought iron SPIDER, that was a gift,with a cinderella pumpkin in it, still in the yard. My friend, the gardner, wants some seeds from some of the gords, so I gues before long I will cut them open, as the cold is starting to get to them.I had volunteer pumpkins 2 years ago.  But these are contained.  I dono know about Christmas Decoations this year.  I do have my harvest wreaths, and my PILGRIMN PAIR out onthe frontporch.  I got the pilgrims about 2 years ago at a hobby lobby marked down from $88 each to about $15 or so, on a sale right before Christmas.  They are really cute. About 3 foot tall, I also actually have some Thanksgiving other decorations, that I put out.  When I think about Christmas, all I can think about is COLD,and PAIN. I bought a new Bethlehem lights tree that last year that immediately lights up when you put the pieces together. It s big, and heavy but beautiful.  So that is easy anyway.  I had Gary sit out on the porch on Halloween to pass out cand, as it is hard to get in and out of the door, with all three nosy dogs, making their way there each time there is a slight knock or noise.  They are about to be sent out of the Living Room for ever, as I bought some new big heavy leather furniture, and no scratches are needed. i plan on putting Sadie's sofa or loveseat in the stairway room, and use the deck door off it forgoing outside for the dogs this winter.  They will miss the bigger living room windows, but oh well.   I wanted one place where people would not always encounter dogs or dog hair.

Have you heard anymore about your trip to St.Louis.  We had United Healthcare before Blue Cross and Blue Shield.I did not notice miuch of  a difference in providers actually.  I hope you are beginning to get an upper hand on that pain!! Surely somebody can be helpful.  Any of the meds helping at all?


Hope to hear good news from yo beforelong.Keep  in touch. Teresa
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on November 08, 2011, 04:05:11 AM
Hi Teresa

I think you decorate a little more than me. I took down the Halloween decos over the weekend and put up the fall decorations. It took most of the day. Half my basement storage is taken up with holiday decorations.  :P

I got a VM last Friday that my PM doc wanted me to look over another copy of the letter they plan on faxing to the St Louis doctor. Today I went to PM to take a look at the letter and pick up a refill script of my pain med. I only found one small correction, so the letter will be faxed tomorrow or the next day. I hope it won't take long to get a reply. This doctor sees patients from all over the world , according to the doctor that talked to my PM doc.

As of tonight, I have felt 3 earthquakes since early Saturday morning. They originated in Oklahoma each time.  :o

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on November 10, 2011, 04:17:11 AM
Hi All

Yesterday was another appointment with my ankle/foot OS. They took another set of xrays which turned out good ! I told the nurse as he looked at my incision that one area in the middle has continued to bleed and ooze a some gooey drainage off and on since the steri strips came off. There were no signs of infection. The nurse took a pair of sterile tweezers to see if there was an internal stitch trying to come out. Having this done did not feel good because he also was kind of stirring things up to promote healing. The Dr came in and decided to flush it with an antibiotic. His resident came in with a 25cc syringe, full with the antibiotic, and 18g needle. He stuck the needle in the incision opening and proceeded to flush the antibiotic, in all directions. This was quite painful and also set off very intense nerve pain. I'm supposed to let him know if it does not heal in a couple weeks or show signs of infection otherwise I go back in 6 weeks.

Today there is still some bleeding, the skin looks red . Hopefully it is just from irritation from yesterday's flushing.

I came across this article by accident about isolating the gene responsible for chronic pain, specifically neuropathic pain

http://www.foxnews.com/health/2011/09/09/scientists-find-gene-that-controls-chronic-pain/

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Jill M on November 17, 2011, 12:24:18 AM
Hi Pam,

I have been catching up on your posts. I have been off the boards for awhile. My Dad was put in Hospice in late September for Prostate Cancer and passed away on October 8th. I have been traveling back and forth to St. Louis quite a bit. I went back for my mom's birthday on 11/5 and became extremely ill with a GI bug and was admitted to the hospital there for 2 days. It has been quite a rough fall for me but sure doesn't compare to what you have to deal with.

I am glad to hear that the x-rays of you foot are looking good. I am sending prayers that the incision area will close up and won't cause you any futher issues.

So happy to hear that the referral to the MD in St. Louis is moving along. Even though I haven't been on here I have been thinking of you. You are on my prayer list.  ;)

Jill
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on November 19, 2011, 04:28:28 AM
Hi Jill

I am so sorry to hear about your Dad. It is so difficult when it comes time to loosing a parent. Please accept my heart felt condolences. I hope you find comfort in all your memories.

Yesterday I called PM to see if they had received a reply to the letter yet. They got it in that morning. She wrote that there wasn't anything more she would be able to do for me. I felt like I had been punched in the stomach and have been pretty down since. I guess I'm back to trying to make it back to Baltimore, which is looking pretty bleak right now. I was hoping since she had schooled under Dr Dellon, that she could help me without all the travel and medical expenses going to Baltimore. It's a shame he is cash only.

Here is a link to Dr Dellon's facebook page

http://www.facebook.com/pages/Dellon-Institutes-for-Peripheral-Nerve-Surgery/121605364564233

Here is a link from his facebook page where you can read the full chapter he wrote about KNEE PAIN OF NEURAL ORIGINS, in Dr Noyes new book, KNEE DISORDERS, SURGERY, REHAB, AND CLINICAL OUTCOMES.  You can read about all the nerves in the knee and about decompressions, resections and dennervation

http://www.dellon.com/documents/Knee%20Pain%20Chapter.pdf.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on December 24, 2011, 10:51:42 PM
To All

I would like to wish everyone a very Merry Christmas and a Happy New Year.  ;D

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on January 06, 2012, 09:32:48 PM
Hi All

Hope everyone had a wonderful Holiday. Starting the New Year with a visit to Pain Management. I skipped December because of insurance limbo til Jan 1. We now have new insurance with a different company. We are paying more per month to get zero deductable, 100% pay and low copays. However PT visits are now back to only 20 visits per year.

Today was time to get injections to the neuromas and 2 nerve blocks. I had 16 neuromas injected with spinal lidocaine since it last longer and a nerve block to the saphenous nerve and tibial nerve , below the knee. These injections are not pleasant,]\
[\ since the whole idea is to hit the nerve then inject the lidocaine. My last block in November, done 2 days before Thanksgiving , helped get me thru the holiday with minimal knee pain, before it gradually came back. Unfortunately these blocks don't cover the nerve pain in the foot. My PM doc also changed the compounded lotion. He increased the dosage of 4 of the 10 meds that make up this special lotion. It does help a little with the burning type pain but not for long. PM doc said I could try 1 lidoderm patch on top of the lotion on the foot and ace wrap it to stick to see if that gives me better relief.

So Wed evening I went to the mall to pick out new eyeglass frames. I tried on about 30 frames before finding the right ones. Yesterday morning, I woke up with pink eye in my left eye :o. My PM doc called my primary care Doc to get antibiotic drops for my eyes. Of all the luck  :P

Next month is another round of injections.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Jill M on January 18, 2012, 02:18:40 AM
Hey there Pam! Happy New Year!

I wanted to check in and say hello!

I am so sorry to hear that the PM MD in St. Louis couldn't help you.  :'( I was really hoping that would be a better alternative instead of returing to Baltimore.  I continue to send prayers your way for pain relief.

My one year anniversary of my TKR is Friday! It's hard to believe!!
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on January 19, 2012, 09:30:41 PM
Hi Jill

Thank you for checking up on me.  Happy Birthday to your new knee  ;D ;D ;D ;D  This is always a big milestone in regards to a TKR. I hope you are enjoying a fully functional knee and activity.

To update on the pink eye saga.........I was prescribed Gentamycin eye drops for the infection. As days passed by while using the drops , my eyes started burning with increased pain every day. By evening each day , I was only able to watch TV thru slits in eyes, could not use computer, read, etc. The pain was getting worse. I couldn't do anything about it last Thursday thru Sat. because I went on business trip with DH. On Monday I called eye doctor. He put yellow dye in the eye and looked thru the scope. He said the gentamycin drops were toxic to the corneas by causing severe dryness. He said my corneas were so dry, they had cracks all over , like cracked dry skin on your hands. He said no wonder you were in so much pain. He said gentamycin is an old drug and there are several newer drugs that are prescribed for pink eye. He prescribed a steroid drop 4x's a day for a week, to heal the corneas in my eyes. Nothing is simple for me !!!!

Last Tuesday, I saw the OS who did my ankle surgery. I told him about the nerve pain I've had since the surgery I had in September, and how it was driving me nuts. It comes from a different nerve, the sural nerve, and is not affected when I get my nerve blocks. I also have some issues with my weight shifting over too far to the lateral side, from the fusion. I've known this doctor for 10 years and this time he was quite irritated with my complaints. We talked about the nerve with regards to dennervstion or neurolysis, both of which he shot down. He said my only option was to implant a peripheral nerve stimulator. He would implant electrodes to the saphenous, common peroneal and sural nerve. The wires would go up, inside my leg, to the abdomen and a battery/control pack implanted in the abdomen. End of appointment.  I left that appointment very upset and angry.  When I got home, I started an email, to update Dr Dellon , everything that has transpired since my surgery in September. I had not emailed him an update, since last August. Unfortunately, because of all the pain in my eyes, I have not been able to finish it. I am hoping, maybe, I can do it later today. I have been told so many different treatments, plus the reply by the Dr in St Louis, who trained under him. I want him to know about this doctor's reply and why she cannot do anything, but he says he can.

I even told my doctor that I sometimes wish I could amputate my leg because of the intense nerve pain. Instead of saying that was not even an option, my OS said with my TKR, it would be difficult to do. I was bowled over because He actually was even giving it as a possibilty !

I've had enough............

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Teresa_S on January 23, 2012, 06:10:02 AM
PAM, I was going to go get my new glasses, now I will rethink that or take a lyso wipe or something with me. Makes you think. I am sorry the nerve pain is sill not resolved. i think perhaps you dr is just wore out, and is out of options, and cannot believe, as you also cannot, that nothing ever turns out the way it should, ther is always complications. I know that the more they cannot solve, they want to blame and not be blamed. Part of the cycle. Might be time for a new one, unfortunately, even though it would take lots of catching up. I have something terribly wrong with my knee, and cannot figure it out. It is like there is a sheath of something that is voer my knee on the inside, and it thuds back and forth also. I so wanted to NEVEr see another ortho pod, but am checking out Iowa city.  I have ruined my right knee also, and am never without pain anymore, and can barely do any stairs, or shopping. So much for the gardening this spring. By the way, I noticed even my mums are confused and had started coming up thinking this weird weather was spring. wonder if I will even have flowers OH well, Hope you feel better and find the answers eventually. T
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on January 25, 2012, 09:05:27 PM
Hi Teresa

I've told several people about my pink eye experience while trying on eyeglasses. They all say they are taking anti-bacterial wipes, including the doctors I've seen. After using the steroid drops for a week, I was still experiencing problems during the late evening and during the night when I've had to get up or early morning phone calls. I could not open my eyes because the burning was so bad. So another call to the eye doctor. Now I am to cut back to twice a day on the steroid drops for another week and he added a prescription drop for dry eyes to use 4 times day for a month. He thought the steroid drop was starting to dry my eye out.

I'm sorry to hear your knee pain has gotten worse. That sucks. I hope you can find help in Iowa city. My pain management doctor grew up and went to med school there. I can echo the sentiment about letting the gardening go. Once again, I did not get more tulips planted.  :P

I am in the process of writing an email update to Dr Dellon. I will be mentioning how the St Louis Dr responded to my pain management Dr's letter requesting treatment. I will be interested in his response. I'm hoping he will take pity ( lol  ;D)  on me and lower his fee , so I can get back to see him. haha

This weather is weird to say the least. Definitely not like the last 2 winters where we had lots and lots of snow !

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on February 09, 2012, 08:28:47 PM
Hi All

I experienced something exciting...for me....Last Friday was my monthly appt with pain management and another round of spinal marcaine injections, for nerve pain to the knee. Spinal marcaine is used for epidurals, because it lasts longer than lidocaine, my PM doc uses this for my knee. I marked the spots on my knee to be injected and had added 2 more spots to the lateral side of the knee. After having these injections , a person will notice the nerve pain is gone. Usually I get no relief down and along the lateral side of my foot. This time I experienced total nerve pain relief from these injections  :o :o :o !!!  A nerve path must have been included in one of these extra injection sites on the lateral side. I normally use surgery marker pen, which wears off. I am going to mark with a sharpie so next appt, I can tell my PM doc about this.

This round of injections gave me total nerve pain relief for 3 days, but now the nerve pain is coming back. To have 3 days of total nerve pain relief was like having a year. I couldn't believe it !!  ;D

I also had updated Dr Dellon with another email. He still says I need to see him for additional nerve surgery.   :P

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: captainruss on February 13, 2012, 07:45:17 PM
Pam,

I was excited to read about your relief from the spinal marcaine injections.  I am confused?  Do they inject the marcaine in your spine or your knee?  I have an infusion pump that puts hydromorphone, bupivicane, and colonadine into my lower spine for my back.  It does nothing for my knee.  I take oral pain meds (oxycontin and oxycodone) but I have such a tolerance that it is not effective and makes me grouchy.  I use llidocane patches on my knee itself and that helps a little.  May I ask more about what pain management you have found to be most effective?  I have had multiple TKR's, multiple rotator cuff surgeries on both shoulders (hurts with crutches or walker) and multiple upper and lower spinal fusions.  I suffer constantly.

I wanted to see Dr. Dellon, but I have been out of work because of the multiple TKR's and cannot afford the cost.  We have excellent medical insurance and I am frustrated that denervation is real possibility, but not available because of cash requirement.  Have you found anyone who will do denervation with medical insurance?

You wrote about Dr. Noyes doing five (5) surgeries on you.  Were all five (5) for AF?  I would be happy with 70 degrees of ROM.  I am also frustrated that my OS cut out scar tissue and I went right to PT, but now I have bone growing in soft tissue.  I had X-rays again today and it shows an increase.  The only way to deal with this, according to my OS is removal by surgery and then radiation to stop bone growth.

I have been to seven (7) OS and the consensus is I should live with 30-40 degrees of ROM, lots of pain, and swelling etc.  My current doctor says he can fuse my knee solid (will raise havoc with my lower back) make it difficult if not impossible to walk, work, etc.  The other option I was given today was to have my leg amputated. 

I cannot put my three kids through college and simply survive without working.  I have ceased PT because the pain is too great for her to flex more than 60 degrees.  I am taking college classes, but I really need to work.  To work, I need to walk halfway normal and deal with the pain.  any ideas you have on pain would be most appreciated. 

Russ
Title: Re: Open Debridement and Proximal Z-plasty
Post by: captainruss on February 13, 2012, 08:52:48 PM
Pam,

Did you have surgery with Dr. Noyes?  If so, how many times?  I thought I read you traveled 10 hours to see him....was he worth the trip?

The lotion your PM people put together...is there a name for it? 

Thanks,

Russ
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on February 16, 2012, 04:02:57 AM
Hi Russ

I remember talking to you before. Are you seeing a pain management doctor? A pain management doctor is the one to prescribe or do the types of things I've had done. I have 2 types of pain nerve pain and somatic pain, which is muscleskeletal pain. The spinal marcaine injections I get are for nerve pain....neuromas to be specific. The spinal marcaine is injected into the neuroma. Spinal marcaine lasts longer than the lidocaine a doctor would use to numb skin before stitches.

Narcotics alone are not effective against nerve pain. You have to have a cocktail of meds to attack it. These different meds affect different pain receptor sites in your body. The most common meds used are combinations of meds used to treat epilepsy, such as neurontin, lyrica, ketamine, tegratol, antidepressants such as cymbalta, amytriptaline, elevil, narcotics, and blood pressure med such as clonidine. These types of meds have neuropathic qualities. There are the topical meds such as lidoderm patches, flector patches and fentanyl patches, topical lotions and gels such as voltarin gel, pennsaid drops, external stimulus such as TENS unit or conduction garments and finally implanted devices such as a spinal cord stimulator or peripheral nerve stimulator.

I do plan to go back to see Dr Dellon. I have excellent health ins. too. I will be reimbursed 80% out of network cost by my ins, since he does not take any. It is difficult to come up with the cash up front,but he is the best peripheral nerve surgeon. There are other doctors trained by Dr Dellon. There was one 3 hrs away from me but she refused to take my case. There is one in Las Vegas and one in Tuscan Az. There was a Dr Scott Wolfort listed in Florida in Gulf Breeze, but I don't know if he is currently listed there. Have you tried Mayo Clinic in Florida?

I've had 6 surgeries with Dr Noyes, each surgery had several procedures, including scar tissue removal.I traveled 700 miles ( one way) to see him. I went there for every appointment and follow up appointments. He was worth every penny and gallon of gas.

Leg amputation is not fool proof for pain relief as some patients experience phantom pain and can develope stump neuromas. You might explore the spinal cord stimulator which is implanted by a neurosurgeon or a peripheral nerve stimulator. Both of these are implanted in your body. A spinal cord stim can be placed for a temporary trial period of 5 days, to see if it will provide pain relief. These 2 methods provide a current that over rides the pain signal. A small control pak, the size of a pacemaker, is placed in the soft tissue of your back or abdomen. This pak allows you to adjust the intensity or type of current your want. You can even turn it off.

The cream my pain management doctor created for me contains the following meds. Sorry I don't have the dosage of each med because he has tweaked the dosages of each med. I put 1-2 pumps to the area I want treated, 3- 4 times daily max 8 pumps/day. This cream was made at a compounding pharmacy.

Compounded cream contains: Ketamine
                                           clonidine
                                           gabapentin
                                           imipramine
                                           mefenamic acid
                                           lidocaine
                                           nifedpine
                                           orphenadrine
                                           cyclobenzaprine

Pam


Title: Re: Open Debridement and Proximal Z-plasty
Post by: captainruss on February 16, 2012, 06:49:18 PM
Pam,

You should write a book....as you know more than every doctor in Florida combined.  Thank you...I do have a intrathecal pain infusion pump for my back....but it is only as good as the doctor running it.  I am on my third pain specialist and they have not suggested any of the different medications listed in that Intractable Pain Handbook you put in your blog.  They have no clues about the topical lotion you are talking about.

I have asked for 2 years for hormone and supplements as I put on 40 pounds when on oxycontin.  I have detoxed a couple of times due to insurance screw ups or changing doctors and I drop weight in days.

My pump ran out a month ago as the pain doctor only works tuesday and thursday.  I had to wait five days after receiving heavy does of hydropmorphone, bupivicane, and cholonodine for the past 4 years.  I went to the ER, but they would not treat me unless I went inpatient and allowed them to put me in detox.  That was a tough 5 days.

I am starting to get aggressive.  With all the pill mills in Florida, you can't get pain medication in the doses I take.  The DEA has cut off everyone from CVS to the little guys.  The only ones they are hurting is the honest people.

I understand amputation is a huge step....but phantom pain cannot be any worse than the actual pain I suffer with every day.  I must get back to work.  I cannot get doctors to comprehend teenagers...college....cars .....insurance...food for 3 teenagers??
Title: Re: Open Debridement and Proximal Z-plasty
Post by: captainruss on February 17, 2012, 04:35:01 AM
Pam,

If I hit the lotto, I promise to contribute to the missmyknee foundation for the betterment of AF sufferers worldwide!!

The lotion that was compounded for you.  Can you give me a name and number of the pain doctor/pharmacy you utilized.

Yes, I go to pain specialists every month.  They are not very imaginative.  I have made a list of everything in the "Intractable Pain Hand Book" from your blog.  I have made an appointment and will either get some help or see another one.  I have actually had my OS refer me to another pain doctor just to get the ball rolling.  I have been so hesitant to demand the relief listed in this handbook, but now I have some backup. 

I did not think about the 80 percent deal.  I have out of network insurance.  Actually, if I wait to the second half of the calendar year, I get put on catostrophic level by my insurance.  I have no copay, coinsurance, or anything.  I would have to come up with the dough, but I would get reimbursed.  I know it is prying, but ball park...what did a denervation cost approximately?

I will try Dr. Scott Wolfort in Gulf Breeze.  I was looking at the web site for the Mayo Clinic.  I took my father to the Mayo Clinic in Minnesota when he was diagnosed with cancer.  Do you have any experience with the folks at the Mayo Clinic in Jacksonville FL?  It is 3 hours a way, but I can make that. 

Have you had any relief from accupuncture?  I am told that the doctors from China are best.  Any advice?

I apologize for the constant pestering.  If I get too annoying, just let me know.  I can't sleep....so I just think all of the time.  I am so excited just getting some alternatives.  I go crazy when they tell me "you need to live with it."

Russ
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on February 23, 2012, 03:05:29 AM
Hi Russ

I'd rather not give out the name of my pain doctor or the pharmacy. You pain doctor should be able to know how to create the lotion from the list of meds I gave you.

I live in the middle of the country, so I have no experience with any of the Mayo clinics.

I developed insulin resistance/ metabolic syndrome from my intractable pain and from the extreme stress I was under from just having had an ankle fusion and my mother's illness and death. I was left in charge of the funeral and disposition of the house and household goods. Because of that , I was probably putting out high levels of cortisol. I gained a lot of weight , esp in the belly, insatiable sugar cravings, extremely high BP, high cholesterol and triglicerides and insulin resistance , which is TOO much insulin in the body. I kept telling my doctors about my alarming weight gain, which I NEVER had a problem with my whole life. I started searching my weight gain combined, sugar cravings along with my alarming high BP ( which got as high as 210/109) and came across the terms, insulin resistance, metabolic syndrome. I asked my doc to be tested for insulin resistance. The lab did a fasting blood sugar. The lab results showed I was correct. My doctor put me on a drug called metformin. This is usually used for type 2 diabetes. Metabolic syndrome is a precursor to type 2 diabetes. My cholesterol levels were high, which I never had before. I was started on a medication called, Simvastatin. I had been on the cymbalta for about 2 yrs. I had read where cymbalta can cause this. My problems also coincided with the start of cymbalta. The cymbalta was started because it has neuropathic pain qualities. I told my doctor I wanted off of the cymbalta for that reason and a few others... side effects such as tinnitus, night terrors, memory loss. It took about 3 mos to wean off. I also take 2 other meds for high BP

My pain ( increase in the burning pain) picked up a bit from stopping the cymbalta , but worth it to get off that med. I've lost about 20lbs so far. I have about another 15lbs, before I get back to the weight and clothing size I was, when I first started pain management.

I've never tried acupuncture. I don't believe it could help if it is a nerve problem esp encased in scar tissue. I feel my problems are way beyond acupuncture.

Pam
 

Title: Re: Open Debridement and Proximal Z-plasty
Post by: captainruss on February 24, 2012, 04:16:16 AM
Pam,

I understand regarding your pain specialist.  I can imagine your concern if he told you some crazy guy in Florida called him wanting a topical remedy he heard about on the internet! 

I also totally relate to the weight gain.  It is really hard as I had oral pain medication.  I have the medtronics pain pump, which you would think would keep me from detoxing if I stop taking oral meds, but it does not.  I have had two experiences detoxing once when I moved from michigan to florida and my doctor in michigan stopped treating me.  I had been receiving 3 month scripts and traveled to michigan once every 6 months to be checked.  He went on vacation, and a fill in freaked when he heard my refill request.  My doc had me on three times the maximum dose.  So, I am less than a week before I run out and he gets confronted by a partner and cuts me off.  Wow.  The thing I did find was I dropped huge weight when I am not on the oral meds.......40 pounds in two weeks.  I gained it right back when I went on it and I am over weight from normal.  I used to swim every day between my lunch cruise and dinner cruise. 

I am just trying to find anything that helps with the pain.  My GP had me hospitalized once as my BP was thru the roof because of pain.  He told my wife I was going to die (widow maker) with a heart attack.  I had no choice, but get screamed at by the cardiologist because he says I am healthy enough to run a marathon after a brutal stress test and cath. 

The toughest part for me is I cannot sleep.  I take sleep medication, pain medication, and muscle relaxers....and I dance with joy if I can sleep 2 hours.  Usually up every hour.  I get so tired I fall asleep sitting in my chair...at the dinner table...reading a book.

I refill my polar cooler.....move to another position (back, side) and take another muscle relaxer to try to get 4 hours each night.  Last night I slept less than 3 hours...but kept waking up the wife.  She hates sleeping alone so a lot of the time I just lay there.   3 a.m. last night I got up and worked on homework.  She gets up for work at 6 and then I try to get another hour or two...but have to get the kids up and start school.

Now I am really worried about my daughter.  She has a knee problem and I am so afraid I will get it wrong?

Do you have any advice on a patellofemoral specialist??

Russ
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on February 24, 2012, 05:15:53 AM
Hi Russ

Besides the suggestions I gave you in another post, you can try sending an email to Sue B Westin. She is Dr Noyes director of clinical and applied research and has her own consulting. She is located in Florida. She might be able to direct you to someone in Florida. She is good about answering emails.    Her Email is      [email protected]

There is a doctor that posts on kneeguru occasionally down in the patellofemoral section. His name is Mark Sanders. He is located in Houston. He is a PF specialist but might know of someone in Florida to see. He goes by drmark on KG. You can send him a private message to get his opinion

Another Dr That posts occasionally on KG is Dr Ron Grelsamer. He has even contributed material for the Information Hub.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: captainruss on February 24, 2012, 12:22:36 PM
Pam,

As always, excellent information.  I have sent an email to Ms. Sue Westin.  I will track down Mark Sanders.  I will travel anywhere to get my daughter treated.  Do you have an opinion on a doctor diagnosing a subluxation and chondromalcia......suggesting a lateral release for the patient at 14 years old?  I have read some alarming material about considering her entire leg and its rotational stability.  She fractured a growth plate years ago and they put a cast on it.  Now her one growth plate is longer than the other.  He indicated he could go in and staple one side so the shorter one can catch up? 

He actually stated he did not think she needed that or to worry about this.  My other question is if he does a LR does that not make the patella that much more unstable?  If it is tracking incorrectly and you loosen it, does this not cause more instability?  I also read that it might heal on its own as she continues to grow?  She is pretty tall and has been nearly two years on her cycle so I am not sure how much more she will grow.  He believes there is one more growth spurt in her?

Russ
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on February 24, 2012, 06:35:26 PM
Hi Russ

I wish I could help you on your LR questions. The most I know is that it is done for lateral tilt. You definitely need professional opinions on that. Kids knees and bone problems are tricky esp where growth plates are concerned. Here is Dr Sanders's website. He does all that limb malalignment care. He is a very straight forward answering man.                   

http://www.sandersclinic.net/

The best Dr in country for malalignment issues is Dr Robert Tiege in Michigan.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: captainruss on February 24, 2012, 07:28:14 PM
Pam,

I thank you.  I am contacting Dr Tiege's office and will see if we can get an appointment.  We are probably going to make a road trip and visit the relatives in Michigan while checking this out.

Russ
Title: Re: Open Debridement and Proximal Z-plasty
Post by: captainruss on February 24, 2012, 11:57:44 PM
Pam,

I went to Dr. Sanders web site and put in my name and cell number.....he called me back personally an hour ago while I was taking the girls to Civil Air Patrol!  We talked for almost 30 minutes and I am going to fly Kiani out there for an appointment.  He says there is no way my OS could diagnose Kiani with out a CT scan and that her being either knock kneed or bow legged (I don't know how to tell which) guarantees that she needs to be straightened.  I know that is not the medical term, but it works for me.

We were all kind of surprised he called me personally.

I am waiting for a call back fro Dr. Tiege.  Question:  If I can only afford to fly Kiani to either Michigan or Texas, which doctor to I go see and which do I send copies of the CT/MRI/Xrays and ask for a long distance opinion??????

Where would you take your daughter??  I also wanted to thank you again for your help.  I know I don't say that enough, but you are really keeping me from ripping my hair out.

Russ
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on February 25, 2012, 05:41:45 AM
Hi Russ

I'm glad Dr Sanders called you back. BTW, your daughter's name sounds pretty  ;D  Dr Sanders certainly has a following down in the patellofemoral section. Crankerchick has used him and biggest fan. From what I can see on his website, he follows Dr Teige's teachings when it comes to malalignment issues. Dr Teige is much older and the "Father" of this method. Several on this forum , some girls, have used Dr Teige. A friend of mine used him to have a femoral osteotomy for malalignment while in her 40's. Something she had problems with all her life. Had a TTT for it but still had problems til she saw Dr Teige. There was a 15-16yr old (older now) girl named Lindsey on the website who had both legs done ( one at a time) for malalignment. When there are issues with bowing or the opposite, it is called miserable malalignment. She saw Dr Teige for that and had surgery. Put Lindsey in the search box and you will bring up all her posts. She even lists email address for contact. Those are the ones that come to mind. I don't visit the patellofemoral section too often.

It probably would help to talk to posters who have used either doctor. Both are nice, easy to talk to, informative. Dr Sanders gives his personal cell phone # to his patients to get a hold of him 24/7 and it was impressive he called you personally. Here is a section on his website discussing patellofemoral issues make sure you page down , he mentions Dr Teige's teachings.

http://www.sandersclinic.net/common_patello.html

Dr Teige
http://www.sportsmd.com/DoctorDetail/id/960/ai/+/sp/+/state/michigan/n/robert_teitge.aspx

Hopefully Dr Teige will call you soon so you can talk to both before deciding.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: drmark on February 26, 2012, 01:19:07 AM
I just read this post, and couldn't help but be amused.
Dr. Noyes and Teitge are both about half a generation older than I, and they have been my principle friends and teachers.  Sue BW and I are good friends, and we just published a paper together in the American Journal of Sports Medicine.  Its pretty much a done deal that if this young lady sees Dr. T, Dr. N, or myself she will probably hear the same story.  As a young kid of 55,  am honored to be in the company of giants.
Title: Re: Open Debridement and Proximal Z-plasty
Post by: captainruss on February 26, 2012, 05:51:07 AM
Dr. Sanders,

I was very impressed with the fact that you would call me personally.  Please understand that when I started asking questions about my daughter's condition, the OS that has operated on my knee stated she needed a LR.  He did this after having XRAYS and an MRI.  No CT scan and despite my asking about her alignment (she looks bow legged or knock kneed) he did not think it needed addressing.  Prior to your call on another thread, the moderator of this site stated he/she knew Dr. Tietge, but had no specific knowledge on you.  The poster I was speaking with, "missmyknee" is one of many who have known people who recommend you.

I am bringing my daughter to Dallas, but I am being very cautious as I explained to you briefly on the telephone, I have had multiple surgeries.  First, I was told my knee was bad enough to warrant a TKR at 47.  I am the one who took that diagnosis without a second or third opinion.  My knee was inflamed, hot, and very painful right out of recovery.  My first OS actually had me in the operating room for a second TKR (new joint laying on the table next to me) when he took a fluid or tissue sample while I was on the table.  It came back negative like the previous tests.  He cut out a pile of scar tissue and closed me.  I was pretty good for a couple of weeks and then the stiffness, inflammation, etc. returned to a higher degree.  OS #1 now tells me there is nothing more he can do for me.

I am recommended by friends (unfortunately did not know about KG) to see a doctor in Orlando who was the team doctor for the Orlando Magic and actually did surgery on Shaq's knees.  I went to him and despite multiple tests and cultures (all negative) he told me he needed to take out the TKR, put in an antibiotic spacer, and six weeks of vancomycin.  He promised me that if he took the samples from inside my tibia and fibula he would know specifically in 2 weeks what the infection was and how to treat it.  I again agree without a second or third opinion.  Two weeks post op and no cultures grow.  He actually ignores me and after 13 weeks the home care people call the infectious disease doctor and complain about the extensive use of vancomycin.  Instead of six weeks, six months later and he is still ignoring me stating that my knee is so bad, he must have a plastic surgeon standing by to close my wound when he puts the knee back in.  He never did replace my knee joint.

I now go to OS #3 who was actually my back/shoulder doctor.  He was not permitted by his previous partners to do revisions.  He goes out on his own and rushes me to surgery because I have been on an antibiotic spacer for 7 months and grinding down my leg bones.  He cleans us my knee the first time...the second time he actually puts in a TKR.  I have immediate trouble with flexion, heat, and inflammation.  He does a third surgery to lengthen my tendon and put in a different size spacer in the TKR.  I am still suffering from inflammation and heat...no ROM so he does a 4th procedure and revises what he refers to as massive scar tissue.  He takes out what he can and puts me in immediate PT (day after release from hospital) five days a week to aggressively flex my knee to hopefully combat the AF that my wife discovered while reading about my condition on the web.  That aggressive PT has reduced the progression of the AF, but I am lacking in ROM and my pain increasing almost on a daily basis.  He does Xrays and MRI only to find that I now have Heterotropic Ossification.  My hero...the guy who has fixed my back and shoulders now tells me he can do no more for my knee except fusing it solid to eliminate the pain or to amputate it and go to a prosthetic.  He believes another surgery to revise the HO and subsequent radiation to prevent its return will expose me to a risk of infection....

I am 2 years out of work....have spent everything I saved working the past 25 years, can barely get around with a walker...and have a 14 year old daughter who has an excellent chance of going to the U.S. Naval Academy.  By the way, my original knee injury 29 years ago cost me an appointment to Annapolis from then Senator Jack Welborn of Michigan.  So....I am scarred to death of making a mistake with my daughter.  I pretty much have one shot of visiting your clinic and then trying to send your results to get a second opinion.  Why, because I did not get a second opinion on myself. 

The sad part, is although I was in pain 2 years ago and my knee swelled, I was working 70 hours a week and supporting my family.  I could do everything except run any distance.  I could run a short distance and walk long distances.  I am now much worse off than I was prior to the initial surgery.  By asking questions, I am not in any way disrespecting your knowledge or ability.  In all honesty, I trusted my three previous OS thinking they would know any possible complications.  If you throw in all of the surgeries, PT, and a 9 day hospitalization with pneumonia, I am justifiably cautious.  Especially with my beautiful little girl. 

I do thank you for calling me back.  That was very reassuring to both myself and my daughter sitting next to me.  We will be "UP" to see you as soon as your schedule permits.  Thank you for your personal interest.....she is definitely worth your time to guarantee her future.

Respectfully,

Russ
Title: Re: Open Debridement and Proximal Z-plasty
Post by: drmark on February 26, 2012, 12:42:30 PM
I can certainly understand where you are coming from.  There is a problem with multiple opinions.  If you go by the "majority rule" I can assure you from where you are standing now, it will be do a lateral release, its minimally invasive, and lets see what happens.  This is the standard arthroscopic surgeon's response.

People mentioned in my previous post will be more likely to all the testing, and tell you that if there is a crooked bone, it needs to be straightened.  This opinion would be considered radical by the arthroscopic lateral release doctors.

Everyone in 1930s England, thought Churchill as nuts as he ragged on about Hitler.  People in France though DeGaulle was crazy as he believe the Maginot line wasn't  impregnable.  As I hope you have learned by now,  being right constitutes a true majority of one.
Title: Re: Open Debridement and Proximal Z-plasty
Post by: captainruss on February 26, 2012, 09:42:24 PM
Dr. Sanders,

Absolutely.  Please don't misunderstand my asking for another opinion (yours) as a capitulation to mob rule!  I am certainly not one of the brightest bulbs in the lamp, but having suffered with a knee and the penalty for taking the first answer provided, I knew the opinion to proceed with a lateral release and without treating the underlying condition of her inequality side to side with her growth plates simply means the condition will repeat itself. 

I look forward to meeting you. 

Russ
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on February 27, 2012, 02:31:25 AM
Hi Russ,drmark

Dr Mark, I was directing him to the "giants" , which included you  ;)

This is a pretty interesting presentation done by Dr Lonnie Paulos. Too bad he is no longer in practice.

http://etelligentmedia.com/ghsortho/Dr._Paulos-The_Maligned_Patella_7_23_10%5B1%5D.ppt.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: captainruss on February 27, 2012, 04:26:07 AM
Pam,

That is really helpful at it is medical knowledge for dummies....which I happily fall into.  I am not pretending to understand more than about 40 percent of that power point explanation, but I will tell you that it connected a large number of very big words with pictures that I could guess the result of. 

I have to admit that I am guilt of what just occurred here.  I am talking about the future of my little girl and if you don't have the stones to ask for multiple opinions, you make the mistake that I made with my previous three (3) OS.  They sound like they know all there is to know about knees.  How am I supposed to know if they are right or wrong?  Of the 3, one was a total butthead, one was like my best friend, and one was somewhere in between.  They all three had no clue what AF was and how to treat it.  I seek out their advice and if I look them in the eye when they give me a diagnosis, I honestly felt if I asked for a second opinion I was disrespecting them.  So, I still see my self shaking my head yes in this replay of a nightmare on my street and next thing I know I am no longer fully mobile and I am being treated for an infection that was never there.

In my daughter's case, I was sitting in the OS exam room who until a couple of weeks ago was my hero.  He does a XRAY and a MRI and wants to do a LR on my daughter.  Maybe that will cure what is wrong with her knee...but listening to Dr. Sanders and researching a few people on KG, I am SURE that she needs to be evaluated much more before any decisions are made. 

The really scary part....is 3 months ago if this OS told me that surgery on my baby was the answer....I would have shook my head up and down and we would be in some recovery room.

I understand what Dr. Sanders is saying about his group of Giants.....they will most likely have the same diagnosis.  I can think of nothing that would make me feel more comfortable than having specialists like Dr. Sanders and Dr. Noyes, and Dr. T all advising the same course of action.  I may have to donate my body to raise the money to get multiple opinions, but at this point nothing will short of that will allow me to sleep.  I finally know why the good Lord has disabled me....If I was working 70-80 hours a week on a boat, I would never have the time to take my girl to see the "Giants".   We would be doing it here and rolling the dice that she is being treated correctly.

I still have to find the money for this epic road trip....but he will provide that is some manner or another.  As always, you keep providing me with information that eases the pain in my chest when thinking about the possible wrong decisions I could make.  If you excuse me, I am going to Craigs List to post my body for sale for medical research!!!!!

Russ
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on March 15, 2012, 08:26:07 PM
Hi All

I Had another round of injections to my knee for nerve pain. I had a total of 20 this time. Two of the injections were blocks. One to the saphenous nerve and the other to the tibial nerve. Much to my dismay, I did not have the same experience as last month. Last month. the injections provided 100% nerve pain relief. I had included 3 extra sites on the lateral side and I think one of those extra sites made contact all the way down to the sural nerve in my foot. This time it did not make it down there. To top it off, my BP was the highest it has ever been at 223/115. My head was throbbing and my hearing was numb , but no pain. They kept me there for an hour til it got down to 170//103, then they let me go.

When I had my appt with the pain management shrink, we were discussing my latest round of injections and my disappointment this time. As tears welled in my eyes, I told him I felt like I've been in pain prison for so long, that I don't remember what it was like, to be on the outside. Then one day, I escaped. I was out for 3 days, enjoying the feeling of freedom, from unrelenting nerve pain. It is more than wonderful, it is pure heaven. I never wanted it to end. Then, I am caught and returned to prison. Only this time, it is very hard to adjust being back in pain prison. I wish I had never escaped.

I hope some day, I will be released permanently. What a celebration, that will be

Pam

Title: Re: Open Debridement and Proximal Z-plasty
Post by: captainruss on March 16, 2012, 01:40:22 AM
Pam,

I had a bad pain week also.  I don't have a pain psychologist, but I was getting medication from my OS and my pain management doctor.  I take copies of what each writes me so it is in each others chart.  I have an infusion pump implanted in my abdomen that has catheters to my spine.  It pumps hydramorphone, bupivicane, and cholonodine into my spine continuously.  I have asked my OS to do the pump because he doesn't.  If he would than I would only have to see one doctor.  My pain doctor won't treat me in the hospital and my OS (back, shoulder, knee) won't do my pump.  Four weeks ago my pump ran out.  My pain doctor works every Tuesday and Thursday from 10:00 a.m. until 3 p.m.   I tried calling, but no way to get a hold of anyone.  The emergency number I had put in my cell was wrong.  I go five days without this medication so of course I detox.  I go to the E.R. when the alarm goes off.....the wife freaks out because my body starts having alarm sounds!!  E.R. says all they can do is admit me and treat me for opoid addiction.  Of course, $150 a day for five days which I can't afford.  I go home and take my oral meds.

Anyway, last week Thursday is my regular monthly appointment to get my oral meds, have the pump refilled, etc.  We don't want to ask for pain meds early or extra pain meds.  I get a call in the morning from PM doc's assistance saying they are overbooked, can I come next Tuesday.  I tell her I am out of oral meds due to the pump being out for five days.  I am on hold for 30 minutes....she has a midterm so wants to leave early.  Anyway, I tell her I have extra scripts left over so I can fill one of those.  So many times I can't get the oxycontin and oxycodone prescribed because of all the laws Florida has past in the last year to try to cut down on the pill mills and illegal scripts where folks are driving in from Kentucky and taking huge amounts of pills back to sell.

So, I go to the PM's preferred pharmacy.  I don't like the guy anyway, but I take in a script that is just over 30 days old.  He refuses to fill it.  Any other pharmacy fills them as long as they are valid.  I leave and drive to the hospital I was at last (65 miles) and fill my scripts....no sweat.  Evidently the preferred pharmacist is made because I didn't fill them with him and calls my PM and tells him I have scripts from two doctors...my OS and my PM.

So, I go to my Tuesday appt. and he tells me he called my OS and he will not give me pain meds again.  I can only fill one kind of med every 28 days per Blue Cross.  I am out of work for two years so I couldn't pay cash if I wanted to.  I was in so much pain as my PM is jabbing me with this needle in my abdomen to fill my pump.  He will never listen to me on its location so he always ends up jabbing me 4-6 times.  I finally lose it telling him I am in pain, I filled the old script I had because I went WITHOUT pain meds, not because I am getting too much.  In Florida, if you get two scripts for the same med, the State now knows and sends a report to both doctors.  The criminals don't care because the pill mill doctors get paid in cash and don't care.  The injured people....( I have had 28 major operations...upper spine..lower spine..both shoulders...knee) give the PM MRI's documenting my pain...same thing...3 years ago I have my GP call an ambulance because my BP is way over 200/over something stupid and tells my wife I am about to have the widow maker.  I have to call in...miss two cruises and a wedding..go the the E.R.....they give me a stress test so stressful I get sick all over myself and then the heart catheter.  The Cardiologist is screaming at me that I am some sort of hypochondriac because I am so healthy....if I wasn't a fat guy I could run a marathon. 

The PM backs off at my first display of any emotion in 18 months and tells me everything is okay......gives me more scripts for the same medication that does not work....Oh...forgot to say...when I could not get him on previous Friday, I call my OS and get a Monday appt.  Monday he gives me Opana ER and Zanax and Flector patches....PM is telling me to tear those up and get the oxy filled that I filled last Friday that his pharmacist called him about which do not work because I have taken them for 10 years.

I went to PM and had the pain pump because they lied their collective backsides off telling me it would take care of my pain.  When I go off on the PM, he tells me I am at a low level (for 4 years) and he can turn me way up.  I have hesitated to tell him how bad it is so that they don't think we are "seeking the euphoria" of opoids.  I had a PM tell me that once.......yes.....I have had all these surgeries just so I can trick these rocket scientists out of opoids that make me bloat like the goodyear blimp, grouchy, emotional, (45 more side effects) but you guys all know what I am talking about.  I am so over trying to make OS who have ruined my knee, Infectious Disease Doctors who ruined my immune system...Physiotherapist who get a thrill feeling the scar tissue tear as they jump on my lower leg....the PM's who act like "I am tough and should fight thru the pain."....and of course, don't forget Walgreens and Walmart who won't carry pain meds, CVS who order less oxy for a month than I get by myself because of the bad people taking it to KY to make a fortune, and than there is the independent pharmacist who is from another country and never had a scratch on him call my doctors to prevent me from getting my pain medication!! 

Now, please understand I am doing much better...Tuesday was really bad but I am trying to be positive.......my Psychology College Class is studying cognitive learning (using your positive attitude to tough thru the pain) so I am self soothing!!  I am the exception (Missmyknee and me) to most of these horrible circumstances and living in Florida, we have millions of elderly Snow Birds who have double TKR's every day of the week that are healthy and last 10 more years than the 10 years promised without complication!! 

I did take my black lab Polly in today for surgery!  She actually is the only member of my family to get good treatment this past year and she came thru the surgery well.  She is still dopey....must be the euphoria from her opoids!!!  She is also wearing a cone and bumping into everything....but doing well and hopefully will be herself in a couple of days.

Pam, I know what your are going thru girl and I also know what you mean about the pain.  The difference when I don't have meds is so intolerable that I can't stand it.  I am looking for a new pain doctor....looking for a new OS.....keeping the same old dog.

Russ
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on March 17, 2012, 05:04:31 AM
Hi Russ

Thank you for posting. I'm so sorry to hear about the horrible time you went thru with your pain pump and meds. I don't know how you did it. It is a shame legitimate pain people can't get treated properly in regards to the pain meds they need. Just another case where law abiding people pay the price for the criminals. You can't even buy a sudafed for a cold, because of all the meth labs.

I'm glad your dog is doing well after surgery. We tend to take care of our furry family members no matter the cost. How can you say no to someone who loves you, no matter what....unconditionally. I'm guilty of that too  ;D

I've read some of your posts on other threads.....I love your sense of humor thru it all.  ;D

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: captainruss on March 17, 2012, 07:05:17 PM
Pam,

I definitely learned a lot off of your blog and reading the Intractable Pain Patients Handbook....that is a must read for anyone who is having surgery!  I am trying to be positive...I unfortunately jumped into several threads where people were thinking about TKR's and I was literally scaring some of them.  I did not intend to, but my situation will make most people do a double take..  I received some advice which was very accurate from the KG, that the vast majority of TKR's are very successful and there are thousands of people much older than I who have two done at once (I personally do not know how), but they do it.

So, other than my post about my day from heck with the pain freak, I am trying to at least make sure fellow knee geeks understand that I represent the group of less than 1/10th of 1% of all TKR's who have complications.  The other side of that coin is only 1/10th of 1% of all OS have a clue what to do when their TKR patient has complications!!  Bad Russ!!

Anyway, my kids say Polly (the mutt) looked like me on muscle relaxers stumbling around the house bumping into things.  The Vet put  a cone on her to keep her from touching the surgery site, but I removed it last night as she was not interested in anything but how to lay on her big pillow with this cone on her head! 

I know it will probably be split into a new thread, but I really believe dogs know what we are saying!!

Russ
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Teresa_S on March 25, 2012, 09:13:33 AM
Pam, although I do not come here frequently, I was worried about you. Was sorry to hear about the disappointment of the injections. There definitely needs to be something done about these Narcotics and their availablilty. I went in on the 03-05-2012, to fill my 30 day supply of oxycontin, and the insurance company told my pharmacist I could not fill tilthe 7th. I said I had billed it on 02-05-2012, and he agreed I should be able to fill it. The pharmacist at the insurance company said that the day you fill it does not count in your 30 days, then you must wait 30 days after you fill it, and the refill it the 31st day, which doesn t count on th next script. I asked them what meds I was supposed to do with all the days that did not count. They told me that by counting the day you get it, you might get it late and not actually need the meds for that day. BULLSH**.   Neither the pharmacist or I could even think of an answer for that!!!! Then they called back and said that in September I filled the script 2 days early, not counting the first day of course, and therefore that was why I had to wait the extra 2 days. B UT in October, I did not fill it till 3 days late, as my appts were off, using up the 2 days early. PLUS I had dropped two of the tablets down the furnace grate. I told them it was completly ridiculous that I could not be allowed to have at least 7 days of meds at all times, that I had to use up all my meds including the last pill befoe I could refill it. They tried to tell me it was MO law and that too is BS, as law allows for a 3 day early refill. Medicare patients can refill theirs 3 days early. SO I also wanted to leave town, and they would not give me it . I called my dr who then ordered me some oxycodone, at not 1/3 the dose of the oxycontin, and I went to refill it after 5 AS THEY CALLED ME AT 4:50, AND NOBODY AT THOSE PILLS IN 20 MG AND GAVE ME 10 MG TABLETS BUT ONLY HAD 17 OF THE 40, THEY NEEDED TO FILL IT, TOLD ME TO COME BACK THE NEXT DAY, AND GUESS WHAT, NO PILLS CAME IN, TOOK 4 DAYS.
iT IS UNBELIEVABLY IGNORANT THAT SOMEBODY I DO NOT KNOW CONTROLS MY LIFE.

At my last dr visit, I had told him, that I really disliked the fact that my body was controlled by my pain, and more than that the meds I needed to be able to do normal actvities, and even more than that the fact that he controlled those. He just laughed, but that lack of control over my own life, makes me furious and causes my bp to rise. He tries to be accomodating, but somebody who has not lived it just does not get it. IT IS BAD ENOUGH TO BE IN PAIN, but to have the pain meds be controlled by insurance, not even the dr. is beyond belief.  I know drs have put off by insurance companies making so many health care decisions like if somebody needs hosiptalization, or not, but this is baaaaaaaaaaaaaaadddddddddddddddd.

I do not personally like taking oxycontin, first for the stigma attached to it, and second, it does not work well for me and has too many side effects, especialloy during hotter weather. It was the drs drug of choice for me. Guess I will ask to go back to the fentanyl patch. It has been over 5 years since I used it.

The insurance pharmacist tried to tell me that I would only have to take my script with me on vacation, and present whereever I was and they would fill it. I told him, that was not so. THat drug is so controlled and not available that some pharmacist who did not knwo me would not fill it.
I m sick of it.  BUT the alternative is pain beyond functioning. I know your prison well. I hope , once again, you find relief, if only for those 3 brief days. Keep in touch. Teresa
Title: Re: Open Debridement and Proximal Z-plasty
Post by: captainruss on March 26, 2012, 04:49:10 PM
Teresa,

I have the same problems.  Most of mine stem from the pharmacists trying to play doctor and decide if "I really need this much medication" despite the fact that a pain management clinic has ordered it. 

I had an appointment 2 wks ago and my pain doctor was overbooked (what's new) so I had to wait for the following Tuesday (this was Thursday) for his next day.  He only works 2 days a wk.  I told his assistant I was out of meds.  After being on hold for 30 minutes, I just took one of my old scripts to the PM preferred pharmacist.  I  only have extra scripts because with the new Florida Laws, I cannot get oxycontin most of the time.  It was from February of this year.....45 days old.  Not only did the pharmacist refuse to fill it, he called my pain doctor at home, told him I was trying to fill old/possibly stolen scripts. 

This guy was the same way.  Must fill every 30 days.  All other pharmacies are 28 days.  My insurance allows every 25 days, but you have to find a pharmacist without a deity complex.

I honestly agree, how can a doctor know what is necessary to treat my pain if he has absolutely no frame of reference on pain???  I also hate the medication as it makes me grouchy...I carry about 40 pounds of water....always dry mouth.  I hate it but cannot function without it.

I hate the feeling as I go into a pharmacy and they look up at you when reading your script and shake their heads.  Let them walk in my shoes once.  I don't go for disability and we pay for our own insurance. 

Russ
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on March 26, 2012, 08:52:49 PM
Hi Teresa and Russ

It is horrible that law abidding pain patients can't get their pain meds. It's not just from pharmacies, it's in the hospital as well. Teresa, I know how you suffered with your revision with no pain meds and I went thru the same thing in Oct 2010 when I had a revision of my ankle fusion with bone graft from the pelvis/hip. That was one of the most painful surgeries I've had, because of the bone graft and I only got oral meds, no IV or IM drugs. To top it off, I had terrible post-op vomiting. I got nowhere with the ortho resident and nurses, pleading for better pain control. They actually told me to think happy thoughts and my pain would go away !!!! I found out my OS was out of town after my surgery. They also were saying I was to go home the day after my surgery when my OS's nurse said 5 days in. I hope I never have to go there again. The time before that, I developed pulmonary edema in the recovery room and had to beg to the nurse I couldn't breath. Thank God an anesthesiologist was checking the patient next to me and came over to listened to my lungs. He said my lungs were wet and started ordering IV meds and breathing tx's, STAT.

Last week, I had to call my PM doc who handles one of the narc drugs and my PCP who does the other, for renewals. It was my PCP idea to put me on that one drug. I go to PCP first to pick up the script then over to PM office to pick up my other script, but this time, they call me back to the exam room. The nurse tells me because of gov regulations/crack down, I need to have one doctor writing both scripts. I refreshed their memories that it was my PCP idea to put me on the other med, not my request. They said either they write both of them or PCP, but it made more sense for them to do it, since they were PM. I said I would have them do it. I told them I had just picked up the other script. I was feeling like a drug addict at this point even though they kept assuring me they did not think that way. I said maybe you guys would feel more at ease if I gave you the script from my PCP. They also handed me a cup for a urine test. I just had a test in December. They said they have to do 3 urine tests in a yrs time. I said the one I had in December was the 2nd one they've done since I started here in 2008. My first one was done after I had been here a year. I also had to sign a new contract with them. They said they had to update all this for the government. So far, I have not experienced my pharmacies reluctance to fill the script, however I have to pick up a new script each month, no call ins.

All this because of the law breakers.

Pam

Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on April 03, 2012, 12:30:58 AM
PROUD OF MY KU JAYHAWKS !  GO KU JAYHAWKS


GO KU   ROCK CHALK JAYHAWKS  GO KU   ROCK CHALK JAYHAWKS  GO KU   ROCK CHALK JAYHAWKS  GO KU


Title: Re: Open Debridement and Proximal Z-plasty
Post by: captainruss on April 07, 2012, 03:42:00 AM
Pam,

I so know where you are coming from.  I am so frustrated with the new Florida laws.  They do nothing to stop the pill mills because not one of the doctors writing the scripts cares if their cash patients are getting scripts from another pain doctor.  My PM rapes Blue Cross to fill my pain pump each month.  I just found out it has a recall.  I also find out that it will hold twice as much pain medication as I am currently getting which would allow me to have it refilled every three months instead of every four weeks.  I could actually get stuck in the abdomen with a large needle four times a year instead of twelve, but the PM will not do that because he gets $4500 to scan, empty, and refill my pump each month.  I understand Blue Cross does not pay what is billed, but a portion of this is getting paid each month.  I am also getting drug screened every month....instead of every four months because I was written scripts by both my PM doctor and my OS.  My PM will not come to the hospital for my surgeries because he has no privileges to practice at each hospital and my OS will not fill my pain pump because he does not have the scanners, etc.

They drug screen me to make sure I am not doing illegal drugs and that I am taking the drugs they give me.  What does it say about our system when illegal drugs are more readily available than prescription drugs.  My PM works two (2) days a week from 10 a.m. until 3:00 p.m.  I have had my pump quit working so I detoxed for five (5) days.  I went to the ER and they would put me on an I.V., but costs $150 a day to lay in the hospital.  I can't afford that.  I sure gained a respect for pain when I detoxed as it makes my knee pain seem insignificant. 

First they operate on you and then they ignore you because they have no clue why I have complications.  They have multiple MRI's and CT scans stating I am in pain...yet they won't treat the pain.  Wow....time to go postal.  I am hearing voices......do you hear the voices....????

OK....you KG's are my witnesses that I  heard voices!!!

Russ
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on April 21, 2012, 07:43:43 AM
Hi All

Last week I had another PM appointment. I had the usual 20 injections to the knee. BP once again was high, but getting 20 injections, purposely in a nerve, does tend to raise a persons BP. They kept me there for an additional hour in a half because of it. PM doc is changing the compounded lotion by changing the lidocaine to tetracaine , to see if I will get more numbing from it. It should be delivered, any day.

I found out from a reliable source that my first OS was strongly advised to retire. This doctor had more than 11 lawsuits, including mine. He left a trail of destruction with patients lives. Finally, he'll do no more harm. I bet those malpractice ins rates, just got too high for the practice to absorb. The other 4 ortho docs I've used since, have all been competent, class acts.

P
Title: Re: Open Debridement and Proximal Z-plasty
Post by: captainruss on April 22, 2012, 03:02:47 AM
Pam,

Go get the putz!  I have been doing research on malpractice and over 85 percent of all cases, good cases, get punted by the judge.  Only 15 percent see a jury.  I have had multiple joints ripped out and my leg bones sawed off because three OS and three infectious disease doctors said I was infected.  I have not found anyone to take my case yet.  I am just interested to know if this qualifies as not the standard of care.

I went to my PM Friday.  I have an infusion pump that puts hydramorphone, colonodine, and bupvicane in my middle and lower spine.  I have been getting hassled because I am on the DEA watch list now because none of my OS will fill my pump.  I have to see a PM for that.  But, having more than 8 surgeries in the last 2 years, none of my PM have what do you call it...priveleges at the hospitals.  So, I have such a tolerance to pain meds after 28 major surgeries and how many other minor surgeries that they have to give me more pain meds when I have surgery.

I am being investigated because Florida has a new law that if you get medications from more than one doctor, they think you are going to pill mills and taking the drugs back to Kentucky to sell for lots of money...don't I wish.  I can't get my pain meds most months because no one in Florida carries the strength and numbers I get.  So, I was reported to my two doctors that the DEA and State of Florida are investigating to see why I am getting pain medication from two doctors.  I took in 15 unfilled prescriptions for just oxycontin to my PM Friday.  I am getting less now from two doctors with 8 major surgeries in the last two years than I was from one doctor 3 years ago. 

I had the pain pump implanted to allow me to cut DOWN on the oral pain meds because the make me fat, me me a grouch, and keep me awake.  Now I am getting less and they are chasing me like I am some dang criminal.

I go Friday and I went to the PM I am with now because one, he is close, but two medtronics, maker of the pump says he is the best.  It took me 6 months for the old fart to review all of my MRI's and X-rays from my two surgically repaired shoulders (4 left side-5 right side) multiple back surgeries (6 lower & 2 upper) and two of those were anterior and posterior at the same time......I am at 12 knee surgeries....and none of that was what I suffered with when the telephone pole I was on broke. 

Well, my PM doc tells me that even though he approved my insurance which is pretty much very good...Federal Blue Cross (Until Obama puts all federal employees on the government option in 2014) that he is not Blue Cross approved and he has not been paid anything in 15 months!  A pump refill and computer calibration is usually billed out at 2500-4500 plus the cost of the medication per month.  He tells me he cannot be Blue Cross provider because he is only one doctor and cannot treat me anymore unless I get different insurance (which pays 60 percent out of network) and pay the difference.

I really don't think my pump is working....I had the Catheter into my spine replaced two years ago because it broke some time before that when I fell of the side of a boat.  All the medication was going into my back, not my spine.  I have been complaining to this guy for months, but he has no surgical clinic to check the catheter.

I then find out because my wife is so worried.  I spent time in the hospital several times because my heart rate and bp go so high because of my pain.  If they knock me out, it goes down.  Well, my $1 million life insurance came due a year ago last christmas.  I was out of work and she wanted christmas...thought I would live forever and let it lapse.  Now with the transfusions, anemia, infection, pneumonia I was turned down.

I have to come completely off pain medication for two weeks.  I have not taken oral meds for 3 weeks and had my pump turned down 45 percent.  I had withdrawls from the orals, now I am in withdrawals from the pump and still have 55 percent to go next week.

I just can't bear having my wife and 3 kids who need college without life insurance.  I am not sure I am going to make it thru this, but can't take a chance not being insured.  I have my blood work done, my heart rate checked....must have colonoscopy and drug screen to get the life insurance approved.

I have the medication but can't take it.  The law they passed in Florida has done nothing to change the people coming to Florida and paying cash for meds to take to KY.  I have been out of work for 2 years...could not afford to pay for meds if not for insurance. 

I have to wonder when it stops.

But...on the brighter side my doggie has recovered from her bladder surgery and sat at the table with my last Thursday and had birthday cake. 

Just have to keep on pluggin.....3 more weeks.
Title: Re: Open Debridement and Proximal Z-plasty
Post by: captainruss on April 22, 2012, 03:13:04 AM
Pam,

There is one thing I found with my last surgery.  I can't get the anesthesiologists to do a correct nerve block.  They either miss or get in a hurry and don't find the nerves.

My last OS put something called ON Q into my knee.  It has 2 catheters that go right into the surgical site (knee) and are connected to two bulbs that hang around your neck.  They put pain medicine right into the knee (surgical site) for thee days at a time.  I actually had them for 9 days (maximum) and then yanked out the catheters at home....kind of like removing a drain.  I guess you are not supposed to go more than 9 days at a time because the medicine will burn the tissue.  That was the best pain relief post surgical that I have ever had.

I would think they could implant the catheters into your knee and let you go on and off it.  It is not a permanent solution, but would give you days of relief at a time.  It did not mess up my mind or make me nauseated.

Russ
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on April 24, 2012, 04:52:59 AM
Hi Russ

I don't know how you stay sane with everything you have to deal with, concerning your pain management. I once asked about a pain pump , but my Dr said no , he felt if it got to that then I should have the spinal cord stimulator. He's brought up several times to at least try it out for 5 days and see if I like it. I keep telling him I am petrified to get scar tissue in my spine.  My OS for my leg below the knee wants me to do the peripheral nerve stimulator.

Each time I had my ankle fused, they did a popliteal nerve block. This involved placing a catheter in the popliteal nerve. I had medication continuously infused. When I was sent home they place a medication bulb on the catheter that I would squeeze every few hours to infuse more medication. The bulb would deflate as it was used and would last about 4 days, then I would pull the catheter out. I've asked my PM doc if he could do one of those or even a femoral nerve block ( I am desperate) , but no go. I wouldn't mind a numb leg.

I hope you get all your PM issues worked out so you get some much needed pain relief.

I'm glad your dog is better and had some birthday cake with you. I just had a birthday yesterday  ;D

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: captainruss on April 24, 2012, 07:20:49 PM
Pam,

Happy Birthday!!  The picture we took of my dog with icing stuck on the roof of her mouth are hilarious! 

Have you ever looked at the On Q system?  It is similar to what you had, but it is not for the nerve.  I had it with my last surgery.  The catheters are placed right in the joint.  I had two bulbs of meds that hung around my neck.  I believe the put bupivicane into the bulbs.  They are programmable to put med continuously into the wound.  They would only let me keep it for 9 days, but it was 9 days of relief.  They are also patient adjustable so you would be allowed to adjust it yourself.

The stimulator and the pumps are fantastic if working correctly.  These are patient programmable also.  Mine puts a bolus into my spine every hours with a steady infusion continuously.  I get a big bolus right before my bed time.  The trial period is easy.  They put in catheters and hang the pump around your neck.  If you get relief after a week, they bring you back and implant the permanent pump.  It is all outpatient.

These pumps are outstanding.  I have a cocktail of hydramorphone, bupivicane, and cholondine.  They told me I had to take 8 days off for the trial, but I worked 12-14 hours every day working on and driving boats.  I have not tried the stimulator because I have not had luck with Tens units yet.  I have also had electrical stimulators implanted in my body and then removed after each spinal fusion.  The last one they cut out after 14 months without anesthesia, only a local.  They were put in to stimulate the bone growth on a spinal fusion.

As for scar tissue in the spine, I new nothing about the scar tissue complication throughout all of my back and shoulder surgeries.  I am curious how it is that I get no scar tissue (that I know of) in my spine but after my first TKR I am a scar tissue farm!  I had 5 knee surgeries at 17 and no scar tissue.  No scar tissue with the 9 rotator cuff surgeries and 7 spinal fusions. 

Any idea how I get scar tissue in my knee and not my spine or shoulders?

The Medtronic infusion pumps are outstanding. 

Try that On Q thing.

Russ
Title: Re: Open Debridement and Proximal Z-plasty
Post by: captainruss on April 24, 2012, 07:44:15 PM
Pam,

I will have my OS get me more info on the ON Q pain treatment.

If you contact Medtronics thru their web site or directly they will send you to a doctor who does their implants. 
I would definitely encourage you to try both.  The On Q is not long term, but days with less pain are welcome. 

Russ
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on September 13, 2012, 07:09:02 AM
Hi All

I thought I would give an update, since it has been 5 mos , since I last posted. I continue to go to pain management, once a month. I still take a cocktail of meds consisting of: oxycontin, percoset, flexeril, neurontin, clonidine, benedryl, celebrex, lidoderm patches, and compounded pain cream. I get 20 injections to neuromas in my knee, a saphenous nerve block and a tibial nerve block , once a month. Spinal marcaine is used instead of lidocaine , because it lasts longer. I usually get 2-3 days of nerve pain relief to the knee, then a gradual return to full pain over 4-7 days. Sometimes I also get nerve pain relief down the leg and across the top of my foot and toes. I do not get any relief along the lateral side of my foot ( except 1 time), since it is a different nerve branch. The Dr also made a change to the compounding cream I use. He increased the Ketamine and changed the lidocaine, to tetracaine. The cream also has baclofen, cyclobenzaprine (flexeril), diclofenac, gabapentin, mefenac acid and orphenadrine. This change has made the cream a little more effective on the nerve pain. I apply this 3-4 times a day. He feels my only choice at this time , since I've exhausted all other treatments is to do the spinal cord stimulator. He gave me the name of a local neurosurgeon who does work on peripheral nerves, but I haven't decided to see this person. I haven't found anything researching this doctor , that makes me feel he does a lot of peripheral nerve work. I still have not been able to get back to Baltimore to see Dr D. I don't see any plans to travel in the future, because of the bad economy. I've been in pain management for 4 yrs now.

During these past 5 mos, I've been diagnosed with 2 new autoimmune disease processes . I guess I shouldn't be surprised since I already have other inflammatory processes such as, arthrofibrosis, atrial fibrillation and insulin resistance. I was told once you have one autoimmune disease, you usually will get others. I found out I have a chronically inflamed bladder, which I take daily medication for and I have chronic dry eye disease. I don't make any tears. I have to take Restasis eye drops, twice a day and an eye gel at bedtime. The gel is done at bedtime because it makes your eyes very blurry and hopefully will provide lubrication to the eye, for the following day. He also has me taking 1000mg of flax seed oil, for the inflammation. Restasis is cyclosporine for the eyes. Cyclosporine is the medication organ transplant patients take, so they don't reject their new organ. I've seen the Restasis commercials many times and never thought I would be one of those people, to use it. He will recheck the eyes at the end of Oct. If I haven't seen any improvement, the he said he most likely will put in plugs to the lacrimal glands. By doing this, it keeps any tear that I do make, to stay in the eye longer, thus lubricating it, rather than draining out thru the nose, in 1-2 secs.

Scar tissue in the knee has gotten worse, above the patella, around the lateral side and under the patella tendon. It has become more painful, plus very audible when the knee bends or straightens and you can feel it when your hand is placed on the area. My ROM is, flexion 90-100 and extension is 2. The last time I saw Dr N, he said he would scope it out, but I don't know if I want to do that at this point, but it is an option. I've had 19 surgeries to this leg, ever since I severely broke my leg in 2000. I'm also having some issues with the foot (same leg as knee) from the fusion. I feel I was over corrected from the fusions. Before fusions, my ankle was almost completely over medially, now I walk on the lateral side. I had to go to the prothesis dept to get a custom orthotic made. I had to do several adjustments to it and gave it several months to see if it would help, but it did not. I also have an AFO brace, but have to wear it with a tennis shoe only, not to mention.... it is ugly! I also wear a donjoy defiance custom brace for my knee , because of ligament laxity.

Well, that's all for now. All I can say is, nerve pain and AF, are h*ll

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: MyKnee2010 on September 16, 2012, 05:31:21 PM
Hi Pam,

I've been watching your thread here for the last couple years as I had saphenous nerve problems too. I actually was able to identify the problem due to reading about your experience - so thank you!!!!

Sorry to hear that things have worse! I was kind of hoping no news was good news! I ended up going to a peripheral nerve specialist in Boston as that was the closest one I could find. He operated on one leg last June & the other last September. The first leg had massive damage to the saphenous nerve as well as another smaller nerve so he ended up disconnecting both. In the second leg, he found that the saphenous nerve had grown through the sartorius tendon so each time I moved the nerve rubbed on that tendon - no wonder I was in pain! He did a wonderful job & I haven't had much problems with the nerves since.

I'm still having knee pain so I went to OS#4 this past week. I'll be going for a bone scan in a couple days as he thinks the femur has loosened from the prosthetic. We'll see what happens - I just want to figure out & resolve this as much as possible.

Thanks again for all the information you've posted. It has helped me tremendously & I'm sure many others as well! Take care, & I really hope one day you'll be able to make some progress with the AF & nerve pain!!!
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on September 19, 2012, 10:43:54 PM
Hi MyKnee2010

Thank you for such a nice comment. If there is anything positive about all of this, it is knowing I have helped someone thru my experiences. My husband's home office is in Boston, so he flies there periodically. I would be interested to know the name of your surgeon who did the nerve work. As I stated above, I don't see any time I will be able to see my nerve doc, since he does not take ins. What a pitty... I have great ins, no deductable, but can't come up with the cash for a surgery fee up front, then submit bill to ins as out of network reimbursement. I bet the Boston one takes ins. My other choice is a doctor in Arizona who trained under mine, who also takes ins.

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on November 20, 2012, 05:59:34 PM
Hi All

I recently saw a Rheumatologist for my Dry Eye disease because I suspected I had Sjogrens ( pronounced: sho-grens) Disease. This disease is an autoimmune disease that attacks your salivary glands and lacrimal (tear) glands. It also causes very dry skin and can affect organs in your body. I had been dealing with dry mouth, throat and skin for 2 yrs. I had a constant hoarse voice too. I thought it was all do to some of the medications I take. It was getting progressively worse , then the dry eyes began. I started researching my symptoms and found it fit the description of Sjogrens. I had some blood tests that came back negative , but the rheumatologist said 70% of the time they come back neg even though the patient has sjogrens. He put me on a prescription mouthwash, prescription toothpaste with a high fluoride, because you are more susceptible to tooth decay and a medication called Salagen (pilocarpine). This med stimulates tear and saliva production. I took the first pill and an hour latter , I proceeded to get nauseated and threw up for 1 1/2 hrs. I also read several warnings of heart arrhythmias ( which I already have) and caution when taking with a med called toprol XL, which I take.  I called Dr next day, told about the N&V and heart/med warnings. They prescribed another med called Evoxac. This med came with same heart warnings. I called DR back with heart concerns and other side affects. It is almost better to have sjogrens with the dry mouth , eyes and other symptoms rather than experience the medicine side affects such as, flushing , profuse sweating etc. I haven't taken the med yet and have an appt with my cardiologist to discuss this with.

So I have another autoimmune disease ( sjogren's) that is classified as a connective tissue disease , just like my  arthrofibrosis and interstitial cystitis . There was a thread on this board, where forum members with Arthrofibrosis , also had other autoimmune diseases. Once you have one autoimmune disease, you have a high probability to get others.

My first autoimmune disease was Arthrofibrosis

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on January 01, 2013, 10:54:22 PM
I thought I would post this link. It is Dr Dellon's chapter on, Knee Pain of Neural Origin, in Dr Noyes book, Knee Disorders, Surgery, Rehabilitation and Clinical Outcomes. It provides excellent information on nerve pain in the knee.

www.dellon.com/documents/Knee%20Pain%20Chapter.pdf

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: Jill M on January 17, 2013, 01:25:20 AM
Hi Pam! I haven't been on Knee Guru for quite sometime. I read through your posts and it breaks my heart  :'( to hear that you are still having so much pain and worsening symptoms in your knee.
I just want you to know I think of you often and keep you in my prayers.

Jill
Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on January 17, 2013, 05:32:06 AM
Hi Jill

Thank you for stopping by to post  :D  I often wondered how you've been and Janet too. I posted on your thread, on what a terrific report you had at your 2 yr post-op check up. I can't believe you have 120 flex!! Keep up the great progress. It's always nice when some of the oldies come back and post their progress 1yr, 2yrs, etc ....down the road.

Best wishes to you !

Pam

Title: Re: Open Debridement and Proximal Z-plasty
Post by: missmyknee on July 03, 2013, 07:14:19 PM
Hi All

I thought I would post a little update. Not a whole lot has changed since my post dated Sept 13, 2012. I still go to pain management once a month. I get 20 injections of bupivacaine in my knee, to all the neuroma sites. I mark the neuromas with surgical pen, which makes my knee look like it has a bad case of purple measles. We did do something different at my last appt. Part of my nerve pain is due to 2 surgeries to distal tibia fractures . One surgery was done to place 2 plates on the distal tibia and the other surgery was done to remove one of the plates , 9 mos later. I can also feel tightness in the soft tissues, due to scarring from the surgery.  My PM doctor had me bring my xrays so he could see the location of the hardware in my leg. He showed me where one of the screws from a plate on my tibia, pokes thru the bone into my soft tissue, right around where my pain is the worst. He then placed my leg under the fluoroscope  and marked my skin, where it corresponded to the screw. Then he proceeded to inject the area with bupivacaine. This helped quite a lot. It eliminated the intense pain , the burning hornets nest pain. It even helped to eliminate the nerve pain across the top of the foot. This helped augment the tibial nerve block I get. Unfortunately these injections don't last very long, but I hope I can get this new area done every month.

Dr Dellon's policy of not taking any insurance, has pretty much locked me out of seeing him again. Another Dr in his practice, Dr Eric Williams only takes 3 insurance co, none of which are mine. I did find another doctor who trained under him, who is very well credentialed and published. His name is Dr Christopher Maloney and he is located in Tuscon Arizona. He does take insurance and takes mine. My goal is to fly out to see him, hopefully this Fall. Here is his website:

http://www.maloneynerveinstitute.com/nerve-research.html#background

http://maloneynerveinstitute.com/about-nerve-institute.html

Pam
Title: Re: Open Debridement and Proximal Z-plasty
Post by: TooYoungForThis1 on September 28, 2020, 09:59:31 PM
Pam,

I heard that Dr. Dellon will help you petition your insurance to pay. Have you tried that? Good luck.