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TKR Turtle still hoping to cross the finish line

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Pumpkin, I'm friends with everyone in the Myers family except Thomas. He's a Rolfer.
 
Small world, I know of him through my Aston Kinetics training.
 
Hi Mary, I am hoping that with September around the corner you will get scoped and find some answers to your questions. Your brace seems to be your miracle device and I hope it helps to strengthen you quads even more with each passing day. :flwrysmile:
 
This is a very minor update but a good one. First, I finally feel, after 21 months (!), I'm 100% in my life again.

I met with my ortho today because my knee is still quite large and feels weird. There's still an effusion with synovial thickening, thus enlarging the joint capsule. I suspect there's some scar tissue in there too and he doesn't disagree. In the course of internet research I found a study that tried a drug called anakinra to treat arthrofibrosis refractory to MUA and arthroscopic lysis. The label use for anakinra is rheumatoid arthritis. One intra-articular injection with anakinra has had success in treating arthrofibrosis. Six out of 8 research subjects showed improvement in ROM and pain, with no adverse events.

My ortho said he's headed to an orthopedic conference in Canada in a couple of weeks and will try to network about this drug, but remarked that generally, when he raises the topic of arthrofibrosis, orthos tend to run the other way.

I've written to the lead author of the study asking him to be available to consult with my ortho. And I told my ortho, "You and I, we're pioneers." He laughed and said he's willing to try as long as it doesn't involve much risk.

The full article is here: https://www.healio.com/orthopedics/...f-Intra-articular-Anakinra-for-Arthrofibrosis.
 
Mary, I'm so glad you are feeling like you are getting your life on track and feeling optimistic! You've been frustrated for a long time, understandably. Nice that your surgeon is open and interested in learning something new!
 
Interesting link, Mary. I hope this is something that your surgeon becomes familiar with and is willing to try. Boy.....are you ever on the cutting edge!!!
 
Mary, I am with you, I will try anything that seems to work. K
 
I need some opinions so am tagging Orthodoc and Josephine. I've notified my OS that I want to go ahead with the anakinra injection. The study I found used one 200mg intra-articular injection for arthrofibrosis. Six of the 8 subjects experienced improvement in ROM. There were no negative effects. My reason for wanting the injection is to settle down whatever is going on with the joint capsule. My ROM is good enough.

My OS tells me that arthrofibrosis originates in the synovium and that mine is thickened. How thickened can it be? My TKR knee is much bigger. It's hard to believe that the additional bulk is caused by synovium plus fluid. I can't help but suspect scar tissue, and the reason I say that is that whenever I go up or down stairs, my knee feels as if I'm wearing super-tight jeans. It doesn't hurt, it's just a restrictive/full/pulling sensation in and around the kneecap. Any time I have to exert that leg in flexion, it makes noise similar to crepitus.

I also want to verify what was told to me by 2nd opinion orthos -- that the laxity in my TKR causes chronic synovitis and swelling.

I have had this on a back burner for a long time because of taking care of my mother, and she died recently. So I can give my full attention to my knee. Not only do I have this strange knee experience plus I have quad wasting. After two years of trying to recover from TKR, I haven't yet given up hope that something can be done to improve my knee without revising it.
 
May deepest sympathies on the loss of your mother, Mary. It's hard to lose a parent.

I hope this new protocol you found, which seems to have promise, is something that will benefit you. I will be keeping you in my prayers as well as keeping my fingers and toes crossed for you. You deserve a break after all this time.
[Bonesmart.org] Turtle still hoping to cross the finish line


 
Mary,

I am so sorry to hear about your Mom!

On the business of dealing with the knee, I don't have any idea. I wish I knew what to tell you, but at least you are a fighter, and that makes all the difference! :happydance:
 
Hi Mary,
Interesting article. I'm going to ask my Rheumatologist about it when I see him next month.
I'm so glad you are doing better, slow and steady wins the race!
My condolences on your loss.
Sandy
 
Mary, I lost my own mother three years ago. My sympathy goes to you. Kelly
 
Mary,

I am sorry to hear about your mother.

I am not sure about your current clinical situation by reading your last several posts. I can see the surgeries you have done by looking at your signature. It sounds like your motion is adequate, but you still have too much of a sensation of stiffness? Or is the problem more pain and swelling related?

I am also not sure about the statement that the laxity in your TKR is causing chronic synovitis and swelling. Typically, laxity would cause more of an unstable feeling rather than swelling. It is important to know if the swelling in the knee if soft tissue in nature or actually an effusion (fluid in the knee joint).

I'll look for your response...

Orthodoc
 
Mary, my condolences on the loss of your mother. I lost my mother 15 years ago and still miss her.
It sounds like you have nothing to lose with this new treatment and you are prob. so used to knee injections (aren't we all?) that this will be a piece of cake. I hope it works!
Keep us posted.
 
Mary,
My condolences on the loss of your Mother. I hope the injections work for you.
 
Thanks for your response, Orthodoc.

I had a rotten recovery because of arthrofibrosis. Very painful. Fortunately my OS got me through nicely. After the arthrolysis I had ROM of 10/85 which I got to 0/120 or so after a couple of months.

My PCP diagnosed me as having quad wasting -- he called it arthrogenic atrophy -- and wanted me to see a physiatrist. I put that on hold due to my mom's overwhelming needs.

After the 2nd opinion docs stated my problem was excess laxity (valgus-varus) and offered revision as an option, I returned to my OS to get a brace and ask about the anakinra option based on a study I read. I ended up getting a brace from a web store that I like very much and gives me the stability I need.

My problem now is not pain. It's the feeling that my knee is stiff and full. Also when I stand up I have to rely on the non-TKR leg. The TKR knee makes ripping noises when it's bent and I'm trying to get up. Getting up out of my kayak takes a minor miracle.

So my knee is effused, has synovitis and feels stiff, plus the quad is weak. I am going for the anakinra option. Who knows? But it feels like maybe there's more scar tissue in there impeding the smooth movement of the knee. I don't want another procedure but I have moments when an arthroscopy to take a look in there and maybe remove scar tissue appeals to me.
 
Mary, first of all, I am so sorry to hear about your mother's passing. It must be a big hole in your life.

But you have summarised your situation nicely here
maryo52 said:
So my knee is effused, has synovitis and feels stiff, plus the quad is weak. I am going for the anakinra option. Who knows? But it feels like maybe there's more scar tissue in there impeding the smooth movement of the knee. I don't want another procedure but I have moments when an arthroscopy to take a look in there and maybe remove scar tissue appeals to me.
Click to expand...
I think Doc would agree with me that any of those situations are likely to make your knee feel, as you describe it, "stiff and full". It's not really that easy to discern which condition is responsible without actual pathology, it just comes down to best guesses. The anakinra treatment looks promising and I suppose if there's nothing else on offer, can't blame you for wanting to try it.
 
maryo52 said:
I had a rotten recovery because of arthrofibrosis.... I had ROM of 10/85 which I got to 0/120 or so after a couple of months... The 2nd opinion docs stated my problem was excess laxity (valgus-varus) and offered revision as an option...
My problem now is not pain. It's the feeling that my knee is stiff and full... It feels like maybe there's more scar tissue in there impeding the smooth movement of the knee.
Click to expand...

I have taken the liberty of shortening your last post... If you read it again, all together, there seems to be so many inconsistent thoughts and concepts (hang in there, I have a point). You describe too much stiffness, yet excess laxity. Most users probably read this and scratch their head.

This is not a particularly common problem but it does happen. A knee can become stiff (or feel stiff) to full extension and flexion. That knee can then have considerable laxity (varus/valgus) at 30 degrees of flexion. I remember having a discussion about these type patients with one of my partners recently. I am not sure that this exactly represents your situation, but it does show the complexity of some knee replacements. I think it is important in your case to make sure that you do not have an effusion (fluid built up on the joint itself) and that you do not have any indication of infection.

I do not have experience with use of the injection that you reviewed. I wish you the best of luck getting the outcome that makes you happy.

Orthodoc
 
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