It's good that you've found a surgeon you like, would you mind sharing his name and location?
Thanks very much for telling us about your symptoms, the more we hear about the details, the more we can build a picture of arthrofibrosis, including what might help and what might not. It's interesting that your knee gets tighter as you move, but it sounds like without increasing pain.
The surgical and post op plan is well thought out. Maybe you could contact me with the details of your hydraulic contraption? It sounds good, we could use more of this type of thing. However, you'll need to be really careful not to suddenly increase the amount of ROM by a large amount, only very small increments should be attempted, or you will effectively do an MUA (not good).
My AF journey began with a TKR of my right knee in 2017. After the surgery I never regained proper rom and had to endure 2 MUA's as well as having a full length plaster cast for a number of weeks. I ended up having revision surgery less than 1 year later and again the rom never returned. Despite all forms of therapy, physio, aqua, cryo, a visit to a rehab centre in Poland and massive effort put in by me I just couldn't get my knee to bend or straighten. Eventually I was told that I had Arthrofibrosis and that nothing could be done except pain management.
I am in constant pain and have to walk with either a stick or crutches as my knee is permanently bent and is so painful to put weight on. It's like living in hell and so frustrating but I have to keep going in the hope that a cure will come. I live in Ireland so do not have access to the cutting edge medicine that may be available in places like the US. I did travel to see a specialist in London last year and had an injection of Anakinra (a rheumatoid arthritis medication) into my knee joint but this didn't do anything for me despite the fact that it has worked for others.
I hate this condition and what it has done to me. I'm only 59 and was superfit going into my first surgery but now I feel like I'm in my 70's most days. I'd give anything to go back to the person I used to be.
Thank you for sharing, your story is very unfortunate, and shows that clinicians need a lot more education about arthrofibrosis. I think we all relate to what you're going through. You might find that gentle daily CPM helps you to recover a little ROM over time. In addition to the non-prescription approaches, I would also suggest the approaches outlined on this website of diet, sleep, and mindfulness - I understand the last is difficult in such a difficult situation. Seeing a rheumatologist and getting testing done may help you access better medications to control pain and inflammation, and could be important since it appears that you might have had early-onset osteoarthritis.
Hello everyone. I have been battling AF since 2014, and I didn't even know what I had because no one had the courtesy to tell me.
I had a Limb Sparing Surgery (LSS), that includes a TKR to remove a cancerous bone tumour (Osteosarcoma) from my tibia. My leg is locked in extension and no one will ever offer a surgery under the universal healthcare system that we have in the United Kingdom (NHS).
When conservative measures failed, my surgeon did absolutely nothing. I found now the only specialist in the United Kingdom, but sadly he only works privately. I can't get insurance because the condition will be considered pré-existent and now I'm unfit for work. Raising the money will be a huge challenge, but I think I deserve a chance.
It is frustrating that the NHS can get away with not offering any treatment since there are no NICE guidelines to treat AF.
I'm glad that I found this space when I can chat with others going through the same.
Sorry for the slow response, I didn't see your message. It seems incredible that the health care system in the UK doesn't have guidelines for arthrofibrosis! We hope the IAA will be able to stimulate more engagement with clinicians for treating it and supporting people. Unfortunately, repeat surgeries are a lottery, and need to be approached very carefully given the high risk of recurring arthrofibrosis, sometimes with worse outcomes. I say this because there are common pathways between tumours and fibrosis, which means that you could have an increased fibrosis risk. That would make it all the more important to see a surgeon and physiotherapist who understands what they're doing, but to be honest, even then, the outcome of surgery would be very unpredictable. I'm sorry I can't be more positive. Testing by a rheumatologist may be able to offer an alternative approach to managing your symptoms.
Hello! Do I have an increased risk because of the tumour that was removed? I couldn't find any literature about limb sparing surgeries and arhtrofibrosis. I had a massive surgery, that included a full reconstruction of the extensor mechanism with a gastrocnemius flap. I had to be on a straight brace for 6 weeks, and then another one and I was allowed to bend gradually. Never passed 45 degrees. Was never offered a MUA or anything.
Of course the post-op chemotherapy didn't favour the healing and my pain was off the charts ( perhaps I had CRPS). Because of my poor response to chemotherapy, I had an immunotherapy drug added to my regime, that was never-ending (48 intravenous infusions) on top of the 17 chemotherapy rounds.
During the pre-operative chemotherapy, my port got infected and developed sepsis. An expert suggested that perhaps a low grade chronic prosthetic infection is the cause of my arthrofibrosis. There is a component of my prosthesis that is loose.
I found an AF expert and next months will have some tests to rule out infection, and an examination of the knee under anaesthesia, apparently because of the way my knee was done ( the patella is not resurfaced), it is possible that the bone has never been sliding and moving as well as it should (another possible cause of AF).
In spite of my complex medical history, I feel positive because I know I won't be having any more chemotherapy, and I truly believe that was very detrimental for my healing. I'm very excited to be so close to have some answers.
I know that the procedures your leg went through were necessary, however in my opinion, they would be likely to induce arthrofibrosis. For example, immobilisation in a brace is used to make animal models of arthrofibrosis in the lab, using healthy young animals (usually rodents), and this effect is stronger when it's combined with surgery. Plus, the substances from upset nerves and the infection would add to the fibrotic effect, so all up, I think it would be amazing if you didn't have arthrofibrosis. Although I'm not aware of studies showing a correlation between tumours and arthrofibrosis, as mentioned before, it is known that some pathways could cause both of these things.
It's certainly possible that you have a chronic low-grade infection, these can be difficult to detect.
It's terrific that you've found an AF expert! Please let us know how you go.
I'm Drewe and Have been battling AF of the knee for 18 months. I'm about to have another surgery so the journey continues. This will be the 6th associated surgery but I feel better armed with good information than when I started.
I'm happy to share any of my experiences with anyone.
I initially had a simple manisectomy. I had a bleed, a washout and another bleed which wasn't addressed for 2 months because of covid and my original surgeon going on holidays. The fluid buildup in my knee after this basically went hard and locked my knee at around 40deg. I then had a arthroscopic synovectomy (with debrider 😩) which made it worse. Then I found a great surgeon who did an open surgery, then a washout.
It's been a year since that one and I've got about 5 - 105deg and maybe 60% strength back. I'm still limping though and favouring the other leg. My knee is super tight and after just a short period of rest, it takes me a few minutes just to be able to walk.
My rehab post the last surgery was the opposite of gentle. I really got after it and overdid it every day.
This time, the plan is to do arthroscopic surgery with the wand, just targeting the scar tissue that's impinging the knee. Then gentle rehab program. Lots of CPM and normatec boots.
I made a contraption that hydraulically bends and straightens my knee which I've found extremely helpful to gain and maintain ROM.
Once I get moving, my knee is ok walking for a while but it gets tighter and tighter as I keep moving. When standing, I have to really concentrate to put weight on my bad leg. I assume it is because I haven't got full extension so the bones aren't stacked, relying on my muscles.
That's my story, no complaints, just observations. my dicky knee is on a journey to become my strong knee. 😁
Hi Drewe,
How are you going? Have you had another surgery?
It's good that you've found a surgeon you like, would you mind sharing his name and location?
Thanks very much for telling us about your symptoms, the more we hear about the details, the more we can build a picture of arthrofibrosis, including what might help and what might not. It's interesting that your knee gets tighter as you move, but it sounds like without increasing pain.
The surgical and post op plan is well thought out. Maybe you could contact me with the details of your hydraulic contraption? It sounds good, we could use more of this type of thing. However, you'll need to be really careful not to suddenly increase the amount of ROM by a large amount, only very small increments should be attempted, or you will effectively do an MUA (not good).
All the best,
Kayley
Hi
My AF journey began with a TKR of my right knee in 2017. After the surgery I never regained proper rom and had to endure 2 MUA's as well as having a full length plaster cast for a number of weeks. I ended up having revision surgery less than 1 year later and again the rom never returned. Despite all forms of therapy, physio, aqua, cryo, a visit to a rehab centre in Poland and massive effort put in by me I just couldn't get my knee to bend or straighten. Eventually I was told that I had Arthrofibrosis and that nothing could be done except pain management.
I am in constant pain and have to walk with either a stick or crutches as my knee is permanently bent and is so painful to put weight on. It's like living in hell and so frustrating but I have to keep going in the hope that a cure will come. I live in Ireland so do not have access to the cutting edge medicine that may be available in places like the US. I did travel to see a specialist in London last year and had an injection of Anakinra (a rheumatoid arthritis medication) into my knee joint but this didn't do anything for me despite the fact that it has worked for others.
I hate this condition and what it has done to me. I'm only 59 and was superfit going into my first surgery but now I feel like I'm in my 70's most days. I'd give anything to go back to the person I used to be.
Sorry for the rant.
Jackie
Hello everyone. I have been battling AF since 2014, and I didn't even know what I had because no one had the courtesy to tell me.
I had a Limb Sparing Surgery (LSS), that includes a TKR to remove a cancerous bone tumour (Osteosarcoma) from my tibia. My leg is locked in extension and no one will ever offer a surgery under the universal healthcare system that we have in the United Kingdom (NHS).
When conservative measures failed, my surgeon did absolutely nothing. I found now the only specialist in the United Kingdom, but sadly he only works privately. I can't get insurance because the condition will be considered pré-existent and now I'm unfit for work. Raising the money will be a huge challenge, but I think I deserve a chance.
It is frustrating that the NHS can get away with not offering any treatment since there are no NICE guidelines to treat AF.
I'm glad that I found this space when I can chat with others going through the same.
Best wishes to everyone fighting AF,
Florencia
Hi there,
I'm Drewe and Have been battling AF of the knee for 18 months. I'm about to have another surgery so the journey continues. This will be the 6th associated surgery but I feel better armed with good information than when I started.
I'm happy to share any of my experiences with anyone.