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TKR Turtle still hoping to cross the finish line

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Maryo I am so pleased to learn you are writing an article on arthrofibrosis. As a non medical person I have tried to research scar tissue after TKR and found lots of info out there but will little applicability. The best info I found was in reading individual experiences on this forum. Let us know when you post article. This is very positive!
 
My TKR might fall within the realm of "failed knee replacement" because it's loose and fibrotic. I have chronic effusion which gives that tight band feeling. You at 6 months have nothing to worry about, I don't think.

What makes my knee livable is a rigid brace. The other day I cleaned the brace, and while it was drying I went a few hours without. So I was reminded of how lax my knee is, and it felt uncomfortable for about a day afterward. However, I am able to do what I want, and I rarely have pain. But I imagine in a few years I'll end up with a revision, and I will be very picky in choosing a surgeon.
 
Maryo can you explain "fibrotic" and" chronic effusion". I too have a thigh band feeling when I try to get beyond my ROM of 115. It is very painful to push beyond that point.
 
"Effusion" means excess joint fluid. There is fluid in the knee capsule. The inner lining of this capsule is the synovium. It's my synovium that is chronically unhappy and makes excess joint fluid. When I bend my knee, the lower outside of my knee bulges with that excess fluid. I don't notice it so much when I walk.
 
I noticed something new about the photo of me from 1976 which has been displayed in my living room. What I saw today are my knees!! Ah, the good ol' days. Josephine Jamie still working on my arthrofibrosis article.
[Bonesmart.org] Turtle still hoping to cross the finish line
 
Wow!!! Ain't youth grand???? Ahhhh....for those days again and we take things like knees and hips for granted. That is a great photo, though!!! And an excellent reminder NOT to take the good things in life for granted!!!
 
Just an anecdote about TKRs improving long after surgery . . .

Recently for the first time I have been able to run from out in the yard into the house to answer the phone. I'm sure it isn't pretty but it's amazing to see this recent progress.
 
Mary, any little bit of progress is a step (literally) in the right direction. It may not have been pretty, but you did it.

I'm not on much these days. I usually just reply to threads I have communicated in as I get emails which prompt me to reply.

I feel bad, cuz i like to encourage others. But it's kinda hard to when your waiting desperately for a left TKR. I'd take just the left at this time. It's unbearable. I do believe one of my golf ball size spurs has cracked and is floating around in regions it ought not to be. But I am stuck.

I just lathered lidocaine all over it, took extra pain meds, ice , heat, meditation, everything. It's driving me crazy.

Sleep is about my only escape, as my insomnia meds are pretty strong. But I would be a vegetable if took insomnia meds all day. So that's out of the question. Plus we have a strong cold front coming through today with the damp and colder air. It isn't helping the situation any.

Ok this is your thread. I won't hijack with my issues. I'm just wishing you kudos on the running for the phone. That story brought a smile to my face, as i know you have had a hard time of it. And for the most part as i can recall without re-reading your whole thread, you seem to have had a failed TKR . And you are not in a big hurry to revise it - and understandable so.

Heck I'm scared to death to actually do it my self. It's not so much the pain. The down time you have to go thru to make it clear on thru to the other side, done and dusted as Josephine would say.

So many blessings to you. Hang in there and i hope you continue to see progress, even if in the slightest amts.
hang in there..take care...Sheryl:flwrysmile:
 
They say life is all about compromise, and as far as my TKR goes, I've had to compromise with Fate. But reading Bonnie's @RunA42K revision and recovery has stirred a wistfulness in me for a better outcome. Am asking @Josephine and @Orthodoc for your thoughts.

In brief, excessive swelling, pain, and scar tissue formation tarnished my recovery. I felt lucky that two months after arthrolysis I was able to achieve ROM of 0-110 (now -5/125-130). I continue to have synovitis and stiffness and a degree of arthrogenic muscle inhibition. At some point I sought second opinions at Mass General and Hospital for Special Surgery for the ongoing problems. Both said my knee had unacceptable lateral laxity; one said live with it, the other recommended revision.

I have acceptable ROM and I cannot say I have pain (at least not as long as I wear a brace), but I didn't have much pain before TKR. So what's the problem? It's a knee with limited ability. I have to be super careful all the time. I wear a rigid brace which helps stability; when I don't wear it my leg feels rubbery. My doctor calls it a "failed TKR." It works day to day but it's only passable.

So it seems as if my medial ligaments are lax. I had about 10 degrees of valgus preTKR and I have about 7 degrees now.

Is it possible to undergo a revision and end up with a leg that's straight, a knee that is not lax, and a joint capsule that doesn't suffer from constant synovitis?
 
Mary, you did not ask me for an opinion---but, I have one anyway!! I also had some laxity in the knee---mine was more front to back. When he put in a bigger spacer, everything felt much better, my knee is much more stable.

My OS admitted to me that some of the adhesion formation was caused by the laxity in the knee. He explained to me why he used the smaller spacer. He is a good doc---the spacers are subjective and no one can be perfect there.
I was glad though that the problem was fixed with only a spacer change.

My recovery was longer since I had to go gently so as not to form more adhesions by inflaming the knee. But, it is all worth it---I have a stable knee and really, I don't spend a lot of time thinking about them---especially now with ski season.

The problem with the brace is that it will cause your muscles to atrophy. It is a temporary fix---not a real fix.

I am glad to see you re-examing the idea of a revision. I think that it would give you a stable and funcional knee.

These decisions are hard, and I am behind you whatever direction you choose. Kelly
 
[slapping forehead] @skigirl of course your opinion is significant . . . and anyone else's. I wished those 2nd opinion docs had taken more time to explain their thinking to me. I left with great disappointment over the laxity (which I didn't realize) and with so many questions. I just cannot entertain another tour of H--l without better understanding, a better plan, and better communication from the ortho.
 
I know that you have a lot of info on adhesions. I remember that doc who wrote a six part article that I sent to you, I forget his name---why not send mri's, etc to him with a case history and just see what he comes up with?

But think too--plan your questions. "There is laxity in your knee" What does that mean? What are the long term effects? How will you repair it? What would you do if this were your knee?

same for adhesions . . .

Mary, I took a course on the "Business of Being and Artist" and got suddenly found myself in a world of business. I did not know what a Business Plan even was. What is a server and why do I need a host for my soon to be website? Just the vocabulary was daunting. But, two years later? I have a business plan in my files--I do an annual budget, I know how long it takes me to make my product and my website is up and running on my hosting site!! it is the same with anything. Last time you were hearing new terms, but now---you have a much better working knowledge of knee terms, how the knee works, how YOUR knee works---and how you want it to work!!

I think the consultations will be different just because you are different. Don't give up without a fight. "Do not go softly into that dark night."
 
Mary,
I would encourage you to explore all your options, skigirl had some great questions for you to ask.
What ever direction you follow, we are here to support you.
 
Mary, I am glad that if my experience will open up new doors for you to get some relief finally. Two years and 8 months of TKR dis function. I wish I would have sought other opinions sooner. I just kept waiting for things to get better but they never did. I thought the scar tissue surgery was going to be the answer for me, but after removing it there was just fresh tissue there for my "sloppy" TKR to start irritating again. Back came the pain, loss of rom, stiffness and swelling. I am very lucky to have found a doctor who is so smart and so good. I never imagined that I would end up with a revision. He told me he would guarantee me 80% that I would be better off than my current state. He didn't push, he told me it was my decision to make, take time to think about it and let him know. He left the room, my appointment was over. I turned to my husband and said "I don't want to go through that horrible pain again, but I can't live the rest of my life the way I am now." My husband said 80% is pretty good odds. I scheduled my surgery before leaving the office that day.

The thought of another TKR would bring me to tears for the first week to 10 days, but at the same time I was miserable. I accepted it, stopped the tears and just took it as a new beginning. I was so pleasantly surprised when I woke up. I felt good. I kept waiting for the ball to drop and I'd fall into that horrific pain again. It didn't happen. The doctor was adamant that scar tissue was no longer a worry. He told me in the hospital that what ever pain I had then, it would not increase. Each day will be better and it has been. In my thread today I wrote of having a bad night last night, really it was because at 13 days post op I felt so good all day that I didn't rest enough, I need to remind myself that I am only two weeks post op, I still have 36 staples in my knee. I can walk without any assistance now, although I do take one crutch with me for trips throughout the house so I don't trip over a dog or dog toy or if I walk longer than usual. I think last TKR I used the walker for at least 3 weeks, then onto a cane. My family is amazed with my recovery, my surgical knee is only slightly swollen now, certainly less swelling then before I had my revision surgery, my two knees really almost match for the first time in YEARS!

I'll see my doctor on Friday of this week for a 3 week check up (although 3 days of short of 3 weeks due to Christmas week). I can't wait to ask him more questions about WHY is this so good this time and why so bad last time?
 
maryo52 said:
I noticed something new about the photo of me from 1976 which has been displayed in my living room. What I saw today are my knees!! Ah, the good ol' days. Josephine Jamie still working on my arthrofibrosis article.
[Bonesmart.org] Turtle still hoping to cross the finish line
Click to expand...

Just looked at your picture from 1976 Mary and like you first thing I am drawn to is the bending of your knees. I find that I do that all of the time, whether at Physical Therapy, out and about, or watching TV, I always notice how people bend there knees and all I think...LUCKY!
 
Oh yeah, I am always noticing knee bending. I'm not jealous, maybe a little envious, but many people my age still squat easily and I'm happy to see that.

It is hard to know where I stand in the good-bad spectrum of TKRs. All I know is I have constant effusion, and the valgus I had pre-op is almost the same except now my leg bends toward the other very easily. I had really really wanted a straight leg.

The next few months are programmed but maybe in the Spring I will think about another opinion. I like that your surgeon gave you a number. The ones I've seen are very vague and that's no help. I understand that there are things beyond their control, but if they do 100s of TKRs a year, they should be able to offer some educated guesses, such as the odds of improvement.
 
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