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TKR Knee from hell

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Hi Maryo52,
I did see the original link. However, I could not open it, unless I paid for it. Thanks for this one! :)
 
Well, you do not have to pay, but you do have to register. It's the most comprehensive publishing site for medical research there is.

Here's the article:

J Arthroplasty. 2013 Mar 21. pii: S0883-5403(13)00096-X. doi: 10.1016/j.arth.2012.11.009. [Epub ahead of print]
Low-Dose Irradiation and Constrained Revision for Severe, Idiopathic, Arthrofibrosis Following Total Knee Arthroplasty.

Farid YR, Thakral R, Finn HA.
Source

University of Illinois at Chicago, Illinois; The Bone and Joint Replacement Center, Weiss Memorial Hospital, Chicago, Illinois.
Abstract

Treatment options for arthrofibrosis following total knee arthroplasty include manipulation under anesthesia, open or arthroscopic arthrolysis, and revision surgery to correct identifiable problems. We propose preoperative low-dose irradiation and Constrained Condylar or Rotating-hinge revision for severe, idiopathic arthrofibrosis. Irradiation may decrease fibro-osseous proliferation while constrained implants allow femoral shortening and release of contracted collateral ligaments. Fourteen patients underwent fifteen procedures for a mean overall motion of 46° and flexion contracture of 30°. One patient had worsening range of motion while thirteen patients had 57° mean gain in range of motion (range 5°-90°). Flexion contractures decreased by a mean of 28°. There were no significant complications at a mean follow up of 34months (range 24 to 74months).
Copyright © 2013 Elsevier Inc. All rights reserved.
 
Just returned from my OS appointment. I thought I was going there to schedule a surgery to clean out all the scar tissue, but, No! Now, he does not want to do another surgery. He feels that my pain levels are out of control and feels it is RSD. He has already sent me to a neurologist when my leg went numb after the MUA. Is it possible to get RSD from a MUA or is it something I've had the entire time? He is afraid that if he does another surgery on this knee that is could wind up worse than it is now. Looking back at my knee's track record - I can agree. it does just keep getting worse and worse. He is composing a package to send off for some second opinions - someone at Penn and 2 at Hospital for Special Surgery in New York. In the mean time - I am stuck and feeling quite defeated. I am open to suggestions, please!
 
Your ortho is going to bat for you. You cannot top HSS. They are a world center for joint replacement. Unfortunately this means more time for you being stuck.

Since I've been on this forum I have witnessed a few members with tricky problems pursue a process of getting their knee straightened out. Some of them did well, others went from bad to worse. I know people who have had multiple surgeries in one area and there reaches a point where more is less. So your ortho is right to be conservative.

I would do everything you can to make every day as good as it can be while waiting to go through this laboriously process of being evaluated by others and then processing what comes out of it. I don't envy you.

I know when I was stuck I set up weekly massages. Some people have had luck with acupuncture. Anything you're doing that is caring would be a plus during this difficult time.

I remember well how discouraged I felt during that period of being stuck, to have the promise of a new knee without the good results most others have. It bites.
 
Thanks for the reply Maryo. It made me feel better just to vent. The OS told me that I seem to have a very positive attitude for all that I've been dealing with. (That is because he doesn't live with me!) I am just wondering, could I have had RSD the entire time and that is why the pain has been so out of control, getting worse with each surgery? Do you think I should be making an appointment with a pain management doc or a doc that specializes in RSD/CRPS?
 
K.F.H. (kneefromhell) If you're headed to HSS, then start working on your list of questions and put "do I have RSD" on your list. How soon will you be seen there? Their website has great profile pages for each doc and you can look up their particular areas of interest and what research they've been involved with.

But why not also go with your instincts to seek out a specialist in pain management? My philosophy is set up whatever consults you think you need. If you change your mind, you can cancel.
 
I don't pretend to have any answers for you but my first TKR was on my right leg and I had been bone on bone for about 15 years prior and had bi-lateral arthroscopic surgery. After my first knee in September of 2011 I had terrible flexion and ROM of about 100 degrees after PT. My surgeon sent me to a more aggressive PT and we saw improvement but he was pushing the limits of pain. My total PT out patient was 18 weeks. I also had scar tissue which felt like a small golf ball on the outside of my knee. This was limiting my mobility and what I found was a tool that runners use on their muscles which resembles a small, about 1", rolling pin. The rollers were about 1-1/2" -2" long and maybe 6-7 of them. Rolling the scar tissue for 5-10 minutes each day several times a day while exercising caused the tissue to "recondition" or maybe break up is a better term over several months time. This scar tissue was where the tendon was reattached. It hurts in the beginning but gets better in time.

Getting better flexion was accomplished by sitting on a chair and resting my straightened led, with a small towel rolled up under the heel, my frozen gel pack on the knee and a 5 pound weight for 10-15 minutes at first. Later the weight was upped to 10 pounds and the stretches lasted 30 minutes. It worked wonders for me. Although the more aggressive PT was painful it was well worth the effort. There were times I had to tell him he went too far but then he would adjust. This knee took a long time but when it healed it was so much better. I actually looked forward to getting the other knee done which was done this past November, the Monday after Thanksgiving.

That knee, the left one, was a totally different experience. The day after surgery I was sitting on the side of the bed and bending it 95-100 degrees. It took many weeks to get the right knee there. There was no scare tissue like the right knee. I still had issues with pain management as most pain meds don't work well for me but it went so much smoother. I'm still working on getting the muscles back in shape and back to working squad with some discomfort although I don't do any heavy lifting. At 59, I look forward to getting my EMT status and doing all those things I enjoy, fishing, RVing, and traveling.

Hopefully some of this may be helpful. The pain is real and hopefully will subside over time. It did for me but then again each TKR is different. I avoided MUA by more aggressive PT as recommended by my surgeon. I'm glad we went this way and I used the same surgeon for both knees. I didn't need the aggressive PT for the second knee. This is similar to what I used broken link removed: https://www.dickssportinggoods.com/product/index.jsp?productId=12842589&gsidynamic=GooglePLA-_-SOCKS/RUNNINGACCESSORIES-_-SOCKS/RUNNINGACCESSORIES-_-SKU-12660283&camp=CSE:GooglePLA:12842589:12660283:SOCKS/RUNNINGACCESSORIES-broken link removed: https://www.thestick.com/cgi-bin/commerce.cgi?preadd=action&key=G-1750
 
Is it possible to get RSD from a MUA or is it something I've had the entire time? He is afraid that if he does another surgery on this knee that is could wind up worse than it is now.
You know, I am afraid I tend to agree with him. Actually, RSD (reflex sympathetic dystrophy) is a subsection from CRPS (complex regional pain syndrome).

Here's a very good and comprehensive site explaining it LINK. I hope it helps.
Some quotes from it are
The pain usually develops after an injury – which in most cases is a minor injury – but the pain experienced is out of all proportion to what you would normally expect. For example, a person with CRPS may only strain their ankle but it can feel like a serious burn. The skin of the affected body part can become very sensitive, and even the slightest touch, bump, or change in temperature can provoke a feeling of intense pain. If left untreated the pain can spread to other parts of the body too.

The cause of CRPS is unknown but the condition appears linked to an abnormal neural (involving the nervous system) response to injury. It appears something (nobody is sure what) causes certain nerves to misfire in some way triggering pain. CRPS could be the result of interconnected factors. A previous theory that CRPS was a psychosomatic condition (the symptoms of pain were psychological – "all in the mind") has been disproved because research shows people with CRPS undergo very real physical changes in their nervous system.
 
Thank you Josephine. I value your opinion & the information you provide. I have been doing a lot of reading about RSD/CRPS. I do plan on making an appt with a Pain management doc & will wait to see what ha & my OS have to say. The thought of being stuck at 30 degrees & not being able to ever walk normally again scares me.
 
[Bonesmart.org] Knee from hell
kneefromhell, I have found an avatar that I thought you might like to use. It is already sized to fit perfectly as I have tested it. Just right click on the attached picture and "save image as" in your picture files. Then hover your mouse of your user name at the top of the page and from the drop down menu select "Avatar". The click the browse button and find the picture in your files and double click it. Then click "Okay"and you are done.

If you are not interested, my feelings will not be hurt. I just enjoy doing this when the opportunity presents itself.
 
I can imagine it does scare you. And the pity of it is there is almost nothing I can say or suggest to make things easier for you. I truly wish there was.
 
Hello! I just thought I'd check in - it's been a while. My ortho (who I thought was the best) says he needs a second opinion & does not want to do another surgery on my knee. It seems that with every surgery I've had, the pain and progress of my knee has gotten worse.:cry: I have an appointment with an ortho doc at the Mayo Clinic in MN at the end of July. It can't come soon enough. I have been in pain since December, with little relief, except when I can't take it anymore and take a percoset. My ROM is still the same (about 25-90 degrees). Everyday things, like food shopping are exhausting. I hope and pray:angel: that this doctor can find the magic needed to fix my knee and make me feel like a normal person once again.
For all of you that are doing well - kudos - keep up the great work!:thumb: I will keep all of you in my thoughts and prayers!!!!
 
Hi Eileen, just catching up with you. I hope you get answers at Mayo, you surely deserve some relief and soon. Keep the faith as you have been doing and know that we are here for support.

Warm wishes,

Dawn
 
Thank you Dawn!
I am hoping for answers too! It's nice to know I can come here and "vent" when I need too! I love reading all the success stories & hopefully can share mine soon!
Have a wonderful day!!
Eileen
 
Eileen,
Just came across your thread, read it and said to myself that is a very good title - you do have the knee from hell :gaah: ! But it sound to me like you are headed in the right direction and hopefully you get the answers and relief you need at the Mayo Clinic.

Did I read in one of your earlier posts that you have RA? Has that been discussed as a possible reason for your knee issues? My daughter has RA which was diagnosed as JRA when she was just two years old (coincidentally we were living in the Philadelphia area then and she was diagnosed at CHOP). She is now 26 and does weekly injections of Enbrel. The RA is in her knees and I've seen over the years any trauma causes severe inflammation for her. Is it possible that as an autoimmune disease the RA is fighting the multiple traumas the knee has endured? Just a thought - I'm no medical professional, just a teacher like you (albeit retired :angel: ) but it made me wonder.

Hope things improve for you quickly!

Heidi
 
I hope you get some options out of your Mayo experience. What about the Hospital for Special Surgery in NYC? They are considered #1 in the US in joint replacement. Anyhow, as you already suspect, it seems, just from what I've observed, that repeated surgeries in one area have diminishing returns. Yet surgery, at least in our minds, offers hope that something will get fixed. I have friends with knee issues who have opted not to go the surgical route for this reason.
 
Hi Heidi - thanks for your reply. Yes, RA is new to me. I was taking Plaquenil before my knee replacement and it was working well. Since then, though, it has not worked. I have an appointment next Friday to discuss what will be next. There is just sooo much going on!

Is it possible that as an autoimmune disease the RA is fighting the multiple traumas the knee has endured?
- that is what I'm hoping to find out at Mayo.
Maryo - my OS sent my info out to several docs both at Mayo, and HSS. The one from Mayo is the only one that responded - so that is going to be my next stop! I do hope that I can get "fixed" enough that I am not in constant pain & can walk somewhat normal. I have two kids that like to be active & trying to keep up is exhausting!
Thanks!!!
 
Hi Eileen,
I was just checking in to see how you are at the moment? I was walking my dogs early this morning & this is the 1st time I've been out & not been consumed with what I call " total uncomfortableness" while walking. I still had pain in the back of the knee and quite a few aches in various muscles but it gave me a glimpse of what life (hopefully!) would/could be like in the near future. When the day comes that I wake up & my 1st thought ISN'T my knee will be the day when I believe I'm winning this knee war :)
Thinking of you & so wish your appointment was sooner than the end of July :sad: Hang in there my friend, focus on that holiday you want to take with the children & remember, we are all here for you :console2: Jaki x
 
Hi, I hope everyone is enjoying their summer. I just returned from my trip to Minnesota to meet with an OS there for a second opinion. What a well oiled machine that place is - absolutely amazing and beautiful too. Everyone there was so nice. Unfortunately I did not get the best news :( I was hoping for a quick fix. Here is what he said - I welcome everyone's opinion on what to do. "Ms. B. certainly has a very difficult problem, one that does not have a quick or easy answer. Her total knee replacement was certainly done in a technically excellent manner and appropriate things have been done to rule out underlying infection. We have done lab tests here and aspirated her knee, there does not appear to be any evidence of infection. She has a sed rate of 12, a C-reactive protein of 11.7 and a cell count in the fluid of just 131. We thoroughly reviewed her treatment options in detail. Obviously for her to be able to ambulate and carry out daily activities she would be better served to have a knee that straightens fully than one that flexes beyond 90 degrees; right now she is stuck at 35 degrees of flexion. I certainly do not think that any type of isolated operation to remove scar tissue, either arthroscopically or open, is going to be able to restore full extension to her knee, that has simply not been my experience in knees other than a very mild flexion contracture. She has about a 35-degree flexion contracture and I think the only way to regain full extension for her is revision of the femoral component, selective removal of additional distal femur, and then I think realistically for her she probably needs a period of cast immobilization after surgery in full extension in order to maximize her chance to full knee extensions for the long-term. After a period of cast immobilization she could then work had with physical therapy to try to regain her flexion. If she runs into problems with that, then manipulation or arthroscopic debridement plus manipulation in an effort to gain flexion can be successful. She fully understands the difficult nature of this problem and the fact that we do not have a quick or simple answer."
I am only 45 years old. I need and want to be active again with my kids. I want to be able to go to amusement parks with my kids and be able to walk around. I want to be able to go food shopping and make it through the store without pain. I appreciate you reading all of this and any feedback! :thankyou:
Thanks,
Eileen
 
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