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Frustration on lack of medical education and treatment

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…


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Gina Johns
Gina Johns
28 août

Hi Erika,

I'm so sorry for the pain and frustration you're dealing with. This is a very difficult condition and can be so isolating. Please know this group is here for you and the IAA is working to educate and hopefully to make this journey easier for those experiencing arthrofibrosis. I would encourage you to read all the blogs on the website. There's a lot of valuable information there. Please reach out when you need some support. We certainly get it! Hugs to you.

Hi from the USA

I was hit by a drunk driver in 2016, causing injuries that resulted in a total knee replacement in 2018. This is where my arthrofibrosis journey began, though I did not know it at the time. At age 45 my orthopedic surgeon did not want to do a replacement but all other conservative approaches had failed and my world was shrinking with pain and stiffness.

Fast forward to today as I am on the cusp of a 5th total revision out of state with my 4th surgeon, this one an expert in arthrofibrosis. All through these tough years I have had wonderful surgeons and consultants, was diligent with PT and home exercises. I’ve had 2 arthroscopic surgeries, 6 manipulations under anesthesia. One was followed with 3 days on epidural with CPM machine continuously running. I’ve tried the Dynasplints for flexion and extension. I’ve had Botox treatments in my quads and…


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Oh my goodness, what an extraordinary story, thank you so much for sharing it with us!! You have faced colossal challenges, including having to work 7 days a week despite the dire situation with your knee! I'm very glad that you're able to let go of any feeling of shame.

Your extensive experience with therapies and family history are very informative and helpful. And I agree, I feel that your medical and family history are "red flags" that should be widely known about, and we badly need biomarkers we can use for pre-surgery testing.

All the very best for your surgery and recovery! I hope that you're able to avoid the cast. Please feel free to ask questions any time.

Kayley


Massage for Arthrofibrosis

Hello, I had TKR on 4/1/2024 and developed severe arthrofibrosis almost immediately. I am allergic to surgical glue but there was an error made and it was used. My wound was an itchy blistered mess for a couple of weeks post op until I was able to pick the glue off. I have always had full extension but after surgery I am at about 30* flexion. I had two surgeons recommend manipulation under anesthesia but something inside told me this was wrong. I didn't do it and eventually had my records reviewed by Dr. Noyes in Cincinnati who advised me to continue with only gentle passive movement. Since surgery I have had massage by an orthopedic massage therapist/reflexologist who initially helped with lymphatic drainage and swelling. I'm finally beginning to feel like my arthrofibrosis is changingand beginning to loosen a bit. I know I have a long road ahea…

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Thanks so much for sharing your story, Gina, it's terrific that your knee is making progress!

Kayley

Recurrent arthrofibrosis treatment options

Hello all. Happy to have found this group and looking for any support or insight. I had an ACLR 5/2022 and 11/2022 had a second surgery for LOA, ended up with CRPS in my recovery. Fast forward and 11/2024 after much debate had another LOA. I had descent ROA and most of my scarring was medial/inferior and in Hoffa's fat pad. I had significant pain from a medial scar that was causing a bony defect in the femur. My surgeon (for this last surgery) is very familiar with arthrofibrosis and took an appropriate multidisciplinary approach. I felt well for the first few months and have taken recovery very slow (6 wk crutches, CPM 8 wk, gentle PT and slow progression with weight training/load) but unfortunatley over the last month (with no inciting event) I feel that my symptoms are returning (pain/stiffness, loss of extension, increased swelling). This happened last time…

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Hi Nicolette,

Thanks for sharing your experiences, I've heard similar things before, about HA injections. I personally think you were wise to reject another steroid injection, since repeated injections are known to be toxic to cartilage.

I think the intra-articular anakinra could help, and it's good that it was offered, but unfortunate that you felt gaslit again, rather than supported in coming to a shared decision where your input was respected.

Kayley

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