Considering surgery to lengthen patella tendon

[Heathers new knee]

Good evening ladies:

Would anyone know where I might find a cryocuff? Going to try for a TENS order, too. I think I'll only have the CPM in the hospital only...not sure yet. Trying to get all my pre-op ducks in a row...the thought of another surgery isn't settling very well but, I know how badly this needs to be done. I've gone and proved it to myself over and over and the knee isn't any better.

I've been painting lately and my knee really hates me for it. My best friends and their 6 children had a house fire last Fri so, we are officially boarding 8 extra people in my household, too. It's CRAZY!!! 

I know how you feel Sharon...I've made it to the PKR road in 20 months flat. I hope the TTT/possible LR works with this so I don't wear it out or anything funky like that. Janet, did you have a TTT to correct the baja or just debridement? My ex-sawbones still isn't keen on the idea of the partial (because I'm 37)but, I hate to disappoint him. I physically feel that damage... bone on bone so, without much cartilage left and rough/jagged bone, there's nothing else that can be done.

Ahhh, the J-brace. I have a love/hate relationship with mine now. It's making my skin quite red and you're right, you can only wear it for so long until it gets REALLY bothersome. It's just a bandaid for us anyhow. Better than tape, though.

I hope the actonel keeps things at bay for you. Not sure but, I'd surely hope that with all the hard-core PT I've pained and pushed through, the effects of inactivity haven't plagued that part. UGH!!! That just sucks, aye?

Janet, I would love to chat before I go and do this permanent thingy to my knee...yikes!! It is a lil scary. I think I still have your number...I'll look.

Take care Sharon and hang in there...March is just around the corner. This new OS is trying to stop my suffering atleast for the temp. It IS worse with cold weather, too. He's given me some pain meds...God bless him. They do take the edge off for a short time. Another bandaid!  Hope to chat soon....

Heather 

[skibum9]

Heather

I have the Donjoy Iceman with the pump. It's probably on it's last leg by now so many surgeries and all, so I guess I could try it out before March. I would hate to have it crap out on me after the surgery. Looks like you can get one for around $200 (a few $$ more than what I got it for through the docs office). Fill it with ice & water, sit it on the floor, and it would last for 4 or 6 hours (depending on the warmth of my knee). Frozen 8 oz water bottles are great to recycle through the freezer. Beats buying the store out of ice and my freezer doesn't make it that fast.

http://www.dme-direct.com/donjoy-iceman-ice-man-cold-therapy-cryotherapy-1100-don-joy/

I have also use the Aircast cryocuff (gravity feed). This was just a pain in the you know what. It has to be at just the right height above the knee for water to flow in, but not too low or water flows out, and you have to manually raise and lower the cooler ever 15 to 20 minutes to rechill the water in the cuff. Pay more for the electric pump. However, if you want it send me a PM with an address and I will send it to you the cooler and cuff (no charge). It's in good condition just taking up space in a closet.

Good luck on your surgery on Monday. I hope it is a success and you get some relief. I have read your posts regarding your ex-sawbones opinion on the PKR. If you knee feels anything like mine, don't let him second guess you.

I had a bad reaction to the monthly dose of actonel. Flu-like symptoms with severe pain joint and muscle pain. Every single joint hurt as bad as my knee for about 24 hours. I hope I can tolerate the weekly dose better.

Hope you friend gets her house rebuilt soon. Sounds like you have a house full, but that is what best friends do for each other.

Sharon

[Janet]

Heather:

See if your OS will write a prescription for the cryocuff and TENS, then your insurance will pay for them. I got mine following my second surgery and have used it ever since (I'm not sure what brand it is). It's great because it stays cold so long....it would even have ice in it 8 hours later. The only problem is that it's heavy when full, so I couldn't move it around at all when on crutches or the walker. But my hubby would fill it and leave it for me. After my TKR, the "hum" it made bothered me so much I preferred to use big bags of peas, which I could get for myself whenever I needed them.

No, I never had a TTT. Dr. W told me that it might relieve one area, but just cause problems in another. Of course everyone's situation is different. I still have the baja and infrapatellar contracture. Dr. B made allowances for it during the TKR, shaping the femur down to give me more room.

I'll be thinking of you on Monday! Do you know what time your surgery will be?

Janet

[Heathers new knee]

Hi Sharon:

Thanks a million for offering to send the aircast cryocuff. I'm going to try to get the OS to write an order for the other one, my auto insurance pays 100% for everything. If I can't get an order, I could pay you for yours and ask to be reimbursed for it. Anything's better than those gel ice packs that I'll melt down in 2 minutes. Won't be able to resume ice massages until the incision heals so, I've gotta plan ahead. Is the Donjoy heavy like Janet's?

The Actonel made my mother sick, too. The doc switched her to something else and she's ok now. Sorry...I can't remember to what, though. Have you called the doc to report your symptoms? Some of my patients have gotten really, really sick, too. I'm sorry to hear you had that reaction, too. Are you taking calcium with vit D, too?

Well, I can see my ex-sawbones' leariness of a partial on a younger person but, what are ya supposed to do? Sit and wait and suffer through until you're "old" enough? Severe isolated patellofemoral arthritis doesn't fix itself. My kneecap isn't even remotely close to looking even semi-normal. It's very rough/jagged. So, the damage to the trochlear groove would surely get worse over time with repeated contact. No space between them, either. I can't let the OS discourage me and am looking forward to getting rid of bone on bone pain. I'll bet you are, too.

Janet, is it scar-tissue that's causing continuous pain for you? If so, Francine has told me that cold-laser treatments have helped her. I sure do hope that a way can be found to get you completely comfortable. You've stopped PT, right? Ever tried acupuncture? I haven't gone that route but, my PT says it works well for some people. Massage therapy was truly the pits because I don't have much muscle to massage...more like rubbing bone and it smarted pretty darned bad. 

Take care and hope to chat soon....

Heather 

[skibum9]

Hi Heather

The Iceman is a little cooler (holds a 6 pack of soda or beer if prefer), so empty it doesn't weight much at all. Once you fill it with ice and water it's probably around 15 to 20 pounds. Definitely can't negotiate the cooler and crutches at the same time. But since it lasts for hours, Mom would drop it off and I would be good to go for a while. I just got used to the "hum" of the motor. It was less annoying than raising/lowering the aircast cooler every 10 minutes to circulate the water back through the ice and change out the ice every hour because it has about 1/3 the capacity of the cooler.

If you get the donjoy one, don't fill to the water line. The seal between the cooler and pump isn't water tight and will break down with time, then you end up with water between the two parts of the cooler. Just make sure the bottom of the pump is in the water and the seal is not. About 3/4 to 1 inch below the marked water line is good. Not sure if other manufacturers have this same problem.

Yes, I did leave a message with the doctor yesterday about my reaction to the actonel, but I haven't heard anything back yet. Yes, I'm taking calcium with vit D.

I sure couldn't wait another 10 - 15 years to be "old" enough for this surgery. Hopefully we will all be ride of bone on bone pain in the near future.

Good luck on Monday. I will be curious to here your account of your pain levels in the couple of days following the surgery.

Sharon

[Janet]

I don't think Heather would mind if I gave you an update on her surgery. I spoke with her last night. Her knee was completely full of scar tissue, which the OS debrided before doing the LR and PFJR. She is home (with an iceman!) trying to keep her pain under control. She is in an immobilizer. She has some home exercises to do, but was basically told to go home and heal. Her tibia was very soft and any jarring could send her for more surgery. She sees the OS again in a month. She's scared about all the scar tissue he had to remove. I'm sure she'll post when she's feeling better.

Janet

[Heathers new knee]

Hi Janet, I forgot to tell you I'd started a new post in the unicompartmental section. I told Sharon that this is a cake walk compared to the ORIF. YAY!!! Ya know, my doc's nurse said something today about the inital surgery with all of the blood that was allowed to be left inside the knee. I didn't have a drain, this time I did and I think that made a world of difference. It appeared that all of the knee surgery patients had drains in. Hmmm, did you?

Sorry, I should've clarified this...I only had the TTT in addition to the PFJR and debridement. I didn't need the LR after he freed up the kneecap from scar tissue. I had my hunches about adhesions pulling it laterally and that's exactly what it was. I wish I could post these scope pics...they're NASTY!!! EWWW!

Sharon, man O' man do I love the iceman...it's the bomb!!! I can't wait to see how you do in March, I think you'll feel lots better, too. The bone pain is Poof...gone! See ya! The tightness is sooo different from how tight scar tissue felt, too. I'm at 45 degrees right now so, do you think the grinding will stay away when I gain more? I hope so. Previously, the more ROM I gained, the worse that became. I asked about restarting PT today just for E-stim...nope! Gotta heal more first, maybe next month. So, I will patiently wait but, the quads are dead right now. Can't even do a SLR...bummer. I'll work hard on those home exercises and hope/wish/pray the scar tissue stays away.

Not much longer to wait for yours. I agree, take all the time you need with PT right there in Cinci. The CPM was pulled from me at hospital discharge, this surgeon does prefer active ROM versus passive. Found that out today, too. Take care and hope to chat soon!!

Heather 

[skibum9]

Janet

Thanks for the update on Heather. I have been following her progress on her thread.

42 days until shiny new parts.

Sharon

[skibum9]

Only 3 days left until my shiny new parts or Bionic Woman status. I still can't believe that it's been 2.5 years since this mess started and this will be the 8th surgery. Hoping this gets rid of the large majority of the pain.

Sharon

[missmyknee]

Hi Sharon

Best wishes on your TKR surgery.    I hope everything goes smoothly. Here's to a new beginning with your bionic knee, you deserve to enjoy some peace with your knee.

My thoughts and prayers will be with you 

Pam

[NotEnough]

Sharon,

Best of luck on the TKR tomorrow! My thoughts will be with you. Hope it all goes well. I look forward to reading your updates.


Sarah

[skibum9]

Well yesterday was the 8 week anniversary of my shiny new parts (TKR) to fix all the cartilage damage that resulted from my AF. I stayed in Cinci for 5 weeks doing all the correct rehab and guess what, that AF returned with a vengeance on day 15. It was like some one flipped a switch and turned on the scar tissue production. Basically ended up with a block of cement or frozen silly putty around the patella tendon/fat pad area. The OS pretty much threw the kitchen sink at the knee to slow the process down (medrol dose paks, cortisone injection, MUA at 3.5 weeks, prednisone for the next 3 months), but during my last visit (at week 7) he indicated that the patella tendon was scarring down to the tibia again. Urgh.

The MUA wasn't painful this time around, because the OS only got me to 114 of flexion on the table and I had been at 105 in PT the week before with a max of 113 at week 2. So there wasn't that stretching of the quad that seems to get everyone. When I woke up, I had to ask if they actually did anything. OS felt that he hit a hard stop at 114, but over following couple of weeks with a lot of encouragement from PT, I managed to hit 125 with overpressure before leaving Cinci.

Currently, the active ROM seems to be 5 to 110, but very stiff moving through that range. I think I'm still getting to 0 extension after hanging the weights, but really have to pry my leg back into flexion afterwords. During extension, I get "pinch" in the fibular head where there is a nerve that is surrounded by inflammation. This has caused a shooting pain through the shin into the ankle and foot. Fortunately this pain seems to have settled down in the last week or so. Either that or I'm not getting to full extension. It's getting easier to get to 125 with overpressure (but still very painful). Really wish I could get the active flexion to catch up with the overpressure flexion. Hamstrings are having a heck of a time getting enough strength to overcome that scar tissue.

Since returning back home, I have been going to PT twice a week, going to the gym every other day to work on strength, and when I'm not doing those things I have a routine to work on ROM which includes stretching, bike, ERMI Flexionator, walking, hanging weights (35 lbs), and ice. It takes me about 2 hours to go through the routine and I repeat it 3 to 4 times a day. In addition, the OS has me on a cocktail of meds (Neuroniton, prednisone, and percocet) to help with the pain and stiffness. Some days it all works better than other days.

You can follow the events in my thread on the TKR board. http://www.kneeguru.co.uk/KNEEtalk/index.php?topic=46014.0

So far the things my knee hates the most is sitting and walking, so I work on tolerating these a little more every day. I have to go back to work at some point and these two things seems to be critical to that. However, going up and down stairs is now a breeze.

At 2 months out, I have no regrets on having the TKR done, just wish that this scar tissue would not have returned with such a vengeance. It's hard staying motivated to keep the rehab going when you seem to be fighting an uphill battle. But I'm sitting here with the knee bent at about 105, which is something that I couldn't do a week ago. Baby steps it is.

I can live with the ROM that I have, now the goal is to figure a way to get rid of the soft tissue and nerve pain. Not sure when that will happen, but some day it will.

Sharon

[Janet]

Sharon:

You'll get there! I have about 100-110 on a normal day following my TKR and MUA and am fine with it. Very rarely do I miss the extra flexion. I haven't had a problem with extension, but I remember after my MUA thinking I was just asking my knee to do so much! If I worked on flexion, the extension got harder and more sore; if I worked on extension, my flexion suffered and was sore. It felt like such a contradictory thing and was confusing. But it all gets easier over time....although much longer than expected. I felt like I would never be able to just stand up and walk without thinking about it, but of course I can. Although I had more flexion before the TKR (about 120-125), I couldn't use it all because of the pain of bending my knee. I'll take 100-110 with very little discomfort over that any day!

Keep up the good work!

Janet