Public

Long story, incredibly short, my left leg has gone through two knee surgeries and two achilles surgeries in the last forty years before I had a total knee replacement on Valentine's Day 2025.

Immediately after the surgery, my leg was a dead weight and would not bend more than 5°. I was in the hospital for 5 days before I could weight bear enough to safely navigate stairs.

I had my first MUA 4 weeks after surgery, which got my ROM from 15° to 45°. The surgeon scheduled my second MUA 12 weeks after my TKR after telling me that "this is difficult for [him] too."

After the second MUA my ROM was 85° and I was desperately seeking reasons for why my knee wouldn't bend. A doctor friend suggested arthrofibrosis. My surgeon said he had known that was my diagnosis, but didn't want to treat it surgically. I started researching and found IAA. I made an appointment with my rheumatologist who admits he (and the colleagues he has talked to) have no experience or guidance on treating AF.

In early August, six months after my TKR, I had my third MUA - this time with scope. A number of large adhesions were removed.

I was on a CPM machine for 24 hours in the hospital after all three of my MUAs and rented one at home for 2 weeks after the second MUA and the latest MUA with scope. It did not feel like it made a noticeable difference and, in fact, after the adhesion removal it actually felt like it made my knee stiffer.

I am in significant pain and my fear is that new adhesions are already growing.

My surgeon seems to be passing any treatment off to my rheumatologist, without even having a conversation despite being in the same hospital and having offices 2 floors from each other. I had to use my research to provide my rheumatologist with possible medication options and list of cytokines to test for - he says the hospital only tests for 3 of the cytokines on the list and my insurance almost definitely won't cover the test.

I live in New York City, a place full of hospitals, medical schools and researchers, yet the only doctors I can find with arthrofibrosis knowledge are orthopedists discussing surgerical options.

My frustration is, how is the patient expected to navigate when you have to fight to get a diagnosis and then jump through hoops to find any sort of whole body approach treatment? Not to mention finding a rheumatologist or immunologist with knowledge of AF.