Open Debridement and Proximal Z-plasty

[Teresa_S]

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

[missmyknee]

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. 

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. 

Pam

[missmyknee]

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

[Jill M]

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

[missmyknee]

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

[missmyknee]

To All

I would like to wish everyone a very Merry Christmas and a Happy New Year. 

Pam

[missmyknee]

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 . My PM doc called my primary care Doc to get antibiotic drops for my eyes. Of all the luck 

Next month is another round of injections.

Pam

[Jill M]

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!!

[missmyknee]

Hi Jill

Thank you for checking up on me.  Happy Birthday to your new knee    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

[Teresa_S]

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

[missmyknee]

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. 

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  )  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

[missmyknee]

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  !!!  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 !! 

I also had updated Dr Dellon with another email. He still says I need to see him for additional nerve surgery.   

Pam

[captainruss]

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

[captainruss]

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

[missmyknee]

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