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sbeby25sbeby25
sbeby25

Obtaining a Diagnosis

Hi .. I have just discovered this site in my search for possible answers for my symptoms.


I have had knee issues all my life. I had my first arthroscopy age 17. Seven more followed over the years with chondroplasty, debridement and lateral release procedures, then PRP injections and finally a TRKR in July 2023 (at 46 years old) as my OA was very advanced by this stage (bone on bone with spurs).


I lost all quad function for 5 weeks and struggled with my bend. I had intensive physiotherapy both with the NHS (I'm in the UK) and privately, with little improvement. I achieved around a maximum 70 degree bend before an MUA at 17 weeks post op. After this MUA I halted at 90 degrees and then went backwards, again despite ongoing intensive manual therapy and sport massage,


I underwent a revision procedure at 10 months post op…


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kayleyusher
kayleyusher
yesterday

Hi Susanne,

I'm glad that you've found the IAA helpful! I can't vouch for anybody in particular in the UK, but I have heard that Glyn Evans performs arthrofibrosis surgery. I don't know his methods, but you could ask him if he uses the methods in the Surgery Checklist. I've also heard that the NDORMS, a part of the Medical Sciences Division of the University of Oxford, does arthrofibrosis research, so they might be able to help.

In my opinion another MUA would not be wise, due to the risk of complications.

All the best, and please feel free to ask questions.

Kayley

Editado

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 de ago.

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.

lkunze5lkunze5

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…


158 Views
kayleyusher
kayleyusher
28 de jun.

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


Gina Johns
Gina Johns

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…

210 Views
kayleyusher
kayleyusher
27 de jun.

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

Kayley

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