International Arthrofibrosis Association
What is Arthrofibrosis
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I had a LTK in July 2022 and an MUA in Nov 2023. My flexion is 120 and extension is ok. I have constant pain; feel like modeling clay is around outer knee. My first PT was very rough. My PT after MUA did lots of slow stretching, eastern type "spooning", water exercise and saved my movement. Now I am trying to deal with pain. I can't stand for any long periods but can walk. Hope to learn more.
The pain with standing sounds like an inflamed Hoffa's fat pad being pinched between the bones of the knee when you have weight on it. There can be less pain from walking because the other knee takes the weight half the time, and the bones aren't always being pressed together so hard at different points during walking. An MRI or ultrasound by an experienced radiologist looking out for fat pad issues should indicate if this is your problem, but it sounds likely. If it is an inflamed Hoffa’s then you could try to minimise standing and even walking, as well as activities such as steps, squats etc and try to settle it down. Some people use crutches or a wheelchair for 6 to 8 weeks, it is likely to take a long time. I hope this helps.
I am Max, 28, from Germany but living in Austria since 3 years now. I tore my ACL in 2019 and got it replaced. I had serious pain in the back of my knee right after surgery. Because of this they kept me for 5 days in hospital instead of 2 which were planned. Rehab went okay and I almost got all flexion back but lacked 5 degrees of extension plus another 5 degrees of hyperextension I had before. After 9 months the surgeon suspected a cyclops leasion and did another arthroscopy but found a lot more scar tissue apart from the cyclops. My extension got back to 0 degrees but I never got back hyperextension which was pretty annoying, because my gait felt funny. Probably here I should have accepted the state with 0:0:130 ROM. But as an ambitious athlete I wanted back my normal gait and full knee function. So I consulted another surgeon and he suspected that the ACL graft itself was a problem. Now I made the biggest mistake so far and agreed to explant the old hamstring graft and had it replaced again with a quadriceps graft. This left me with completely atrophied quadriceps and another cyclops + mild arthrofibrosis but a much greater amount of patellofemoral pain. Cyclops + scars have been removed again 3 months ago but patellofemoral pain persists. ROM is still 0:0:130 and I adapted to the different gait which is not pathological, but the pain is very persistent. My impression is that my patella runs rather on the outside of the knee but I am insecure whether this is causing the pain or whether there are again fibrotic processes. I had 5 surgeries so far so l am pretty fed up with having hope to get pain free and not reaching this goal. I also know that I have to be gentle and patient with my knee but this is really not so easy. I also struggle with the right amount of exercise to strengthen the leg that functions okay in terms of ROM. The problem really is the pain right now and my fear of getting AF again.
Thanks for sharing your story. Unfortunately, the fact of so many surgeries means that you will have some amount of scar tissue, that is the process of fibrosis. It's made by cells called myofibroblasts that form to heal surgical wounds, and some always persist after each surgery.
It would be helpful to have an MRI to understand what is happening in your knee, and if the patella is maltracking. Even an X-ray would be helpful.
I think it's likely that you have some fibrosis of the Hoffas Fat Pad (IFP) since this is typically cut during ACL surgery. This can pull the patella downwards and cause pain, especially after exercise or even just standing, as the Hoffas becomes swollen and then pinched between the bones in the joint.
If that sounds right, and it was my knee, I would be very careful about the amount of time spent weight bearing to stop that inflammatory process of IFP pinching, and try to resolve the inflammation. It's very important to stay focused on as good a recovery as possible, and be patient. Muscle building in the affected leg can wait, it's the health of the joint that is important.
Thanks for the extensive reply. As someone with two MSc. in both Math and Econ I am capable of critically reading any scientific Paper presenting empirical evidence and I came across a lot of work on AF stating what you subsumed. However it is insalenely difficult to find physicans of phyisios who are familiar with the disease and who can give clear guidance to somebody who is actively researching possible treatments with methodological understanding like me. This and my atheltic ambition makes it really heavy to sensibly program Sports as I am very much into swimming and cycling and I dont know where I need to be careful because I can easily swim 2km without pain but a lot of beneftis to my mood and I can also cycle 100km with minor pain, if it is there then just around the patella and never with ROM loss. I mean I know I am crying in a high level with my 0:0:130 ROM but pain is debilitating a lot in daily life not in Sports...
Thanks for the feedback. The IAA board is developing a training course for PTs that will be delivered in Europe, and we hope, the US, so the information about appropriate PT in the context of AF will start to get out there. However, it's largely up to individuals to educate themselves at this point.
Regarding exercise, swimming likely has the least impact on the Hoffa's, especially if you can train yourself to keep your legs straight when kicking in freestyle. Given that you have some pain from cycling, I suggest that you focus on the stationary bike for now, so long as you don't get a pain response from that. Pain is an important signal that you really need to pay attention to, people can't afford to ignore it and continue with the pain-generating activity, or things likely won't go well. So, use the feedback from your body to guide what you do, your knee needs to be in charge for a while. If that means you can't stand around and talk to people, well, that's something you need to adapt to, for now. If you have pain when sitting immobile then you could use a CPM to stop those adhesions from forming during immobility.
As you identified, pain can be a huge problem in daily life, and the focus needs to be on getting rid of that, so far as it's possible. It might be a good idea to see a pain specialist, especially if you think there is pain from nerve fibrosis (CRPS), that is not related to your activities. They might prescribe pregabilin, or similar, to help settle nerve inflammation. Your doctor might also be able to prescribe pregabalin.
Thank you for introducing yourself, it's nice to "meet" you. It' great that you approached your treatment with a lot of thought and care. A knee's bad reaction to stress in flexion is typical of a scarred IFP (Hoffa's fat pad) that gets pinched between the bones, you may have read the section on the IAA about that under "What is Arthrofibrosis". You're right to be very careful about not reactivating the inflammation.
Regarding blood flow restriction, I think that your interpretation of the science is correct. A lack of oxygen (hypoxia) is a very powerful driver of fibrosis. Based on this, I believe that blood flow restriction is very unwise when somebody has active arthrofibrosis. It has been used to build muscle by a physiotherapist who is very experienced in treating arthrofibrosis, but only well down the track after the knee has recovered. He understands when somebody might be ready for it. For some people blood flow restriction might not ever be safe to perform, but I'm not aware of any proper research into this. It may take longer for your knee to fully recover to the point where the inflammation won't drive muscle atrophy. A good rule is, if something makes your knee feel worse afterwards, then reduce it or stop, but sometimes the bad effects of overdoing an exercise is not reversible. The blog on muscle atrophy is good for understanding the cause of of that.
I hope that helps,
Hello, I had a severe twisting injury (01.08.2021), got arthrofibrosis within the first 4 days after, and after 3 months with a stiff knee, I had surgery: arthroscopy + brisement.
Used CPM several times a day for 3 weeks, cycled with low effort and was on morphine. Achieved good ROM. Researched everything I could (not much) about arthrofibrosis and in the process after I had achieved sufficient ROM was very careful to avoid exercises that triggered the inflammation. None of all the physiotherapists, surgeons and rheumatologists I have met have had any knowledge of arthrofibrosis and often the guidance has been downright harmful. Could feel the artofibros was active as long as the inflammation was active and that was while my bone bruise healed - it took 1 1/2 years. During that time, my bad knee was constantly 1-2 degrees warmer than the other. Now two years after the injury, I do not have an active inflammation, but I am still very careful about provoking pain, as I suspect that I can "wake up" the "sleeping" arthrofibrosis. Also still have a feeling of stiffness that varies. It is worst if I stand still or sit still. Think it has to do with lack of oxygen supply..? Suffers from quad astrophy and finds it very difficult to train as the knee reacts negatively to stress in flexion. I have been recommended Blood flow restriction (BFR)
"Blood flow restriction (BFR) training has been found to have significant benefits for skeletal muscle development. BFR uses a belt or tourniquet applied to the proximal portion of an extremity to partially or fully occlude blood flow in order to stimulate muscular adaptations that improve muscular mass and strength"
BUT I fear that occlusion will provoke fibrosis-production to start again? I read this under surgery warnings: " No use of a tourniquet during surgery unless absolutely necessary. Hypoxia (lack of oxygen) is a powerful driver of fibrosis" and so I thought taht it could proberly be the case for occlussion pysiotherapy/Blood flow restriction (BFR) training..??? Any one who have tried BFR? Or who have foud other ways to succeed getting muscles back without challenging the knee joint? Kind regards Katrine from Denmark
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,
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.
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.
Best wishes to everyone fighting AF,
They are denying me a referral to an orthopaedic hospital. My arthrofibrosis hits them where it hurts them the most, their ego. I have all the surgeons in Scotland against me and the excuse of the board is that all of them oppose to my surgery, which I couldn't care less about because they didn't even assess my condition properly. It is good that I have evidence to expose their lies and the gaslighting that went on for many years.
I guess I will need to keep fighting. Thanks for all the work that you do l for us ❤️
I'm really sorry about that, I don't know what to say. Maybe you could explain the problem as a poorly fitting prosthesis.
Yes, I will have to explain the mismatch, I don't think anyone would care considering the experiences all these years. I need to get a good journalist to write a story about this.
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.
Thanks very much for sharing your experience, we'll be following your progress and wish you all the very best.
Did your AF start after a knee surgery? Do you have pain after standing and walking?
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. 😁