Groups Feed

View groups and posts below.

This post is from a suggested group

April 7, 2025 · posted in Public

Help with complications after ankle ligament reconstruction

Greetings,

I discovered this website when searching for anything that could elucidate or help in my case. I am a 32-year old man from Brazil, and eight years ago (when I was 24), I accidentally fell down a flight of stairs and had torn 2 of my ankle ligaments (calcaneofibular and talofibular, I'm not sure if those are the right names in english, I apologize for that).

Anyways, I went to a doctor who was adamant that we should do reconstruction surgery as soon as possible, and so I did as I was told and fit as soon as I could on his schedule, which meant that I had surgery 1 month after my accident. I didn't do physical therapy or anything during this time period, except being immobilized with a cast while awaiting for surgery. Post-surgical recovery was a bit complicated but I moved on with my life, trying…

17 Views

kayleyusher

2 hours ago

Hi Augusto,

See if you can consult Sebastiano Nutarelli via telehealth, he's a very experienced arthrofibrosis physiotherapist. His contact is info@eukafcenter.ch.

All the best, and please let us know how you go.

Kayley

This post is from a suggested group

Nani

April 2, 2025 · posted in Public

Genicular artery embolization

Does anyone try genicular artery embolization? It was suggested to me by one of my docotors for pain relief. But he doesn't know if it actually helps with AF - pain and limited ROM. I was wondering if it could worsen my AF as the pain still helps me not to overdo it in PT and daily live? And when I am active (even standing) my knee shows a bluish discoloration, does that mean I already have a problem with my blood flow there?

34 Views

Nani

2 hours ago

Hi Kayley,

Thank you for your response. Dealing with arthrofibrosis and having to decide what kind of treatment to choose is tricky and complex so your input is really helpful. I really appreciate everything what the IAA is doing.

This post is from a suggested group

eun

March 31, 2025 · posted in Public

NSAIDs timing and duration questions

Hello! Have read a lot on this forum (ty and also the fb group) and others that NSAIDs (other than aspirin) early in postop may increase risk for AF.

But wondering if there is guidance on the role of NSAIDs outside of the immediate postop period. Seems like sometimes they may be beneficial in helping decrease inflammation and swelling especially as one progresses in PT and loading the knee in rehab for flares for shorter bursts? But want sure if even these are harmful? And whether there is a maximum duration of number of days one should aim for NSAIDs if have to take them?

What is early postop defined as? First 6 weeks? Or longer?

Are certain NSAIDs less bad or less risky for AF progression or development? Several have mentioned Celebrex vs Naproxen/ibuprofen. is there literature or evidence as to how long a burst of NSAIDs could be…

57 Views

Rick Lee

2 hours ago

Hi Kayley, thank you very much. I will talk to my doctor right away!

Best,

Rick

This post is from a suggested group

Florencia Pistritto

March 30, 2025 · posted in Public

Did anyone in here have a Judet quadricepsplasty?

This surgery was suggested for me, but I'm struggling to find a surgeon to do it. I'm based in the United Kingdom.

Any input would be appreciated, and I'm willing to consider treatment abroad. The difficulty that I'm facing, is that I need a surgeon that is familiar with the implant that I have (Stryker), and might need some bits in between the knee replaced, and a patellar button as well to resurface the patella, since that is why I have arthrofibrosis, a mechanical failure. I'm veru frustrated to have a surgical plan and being unable to execute it.

48 Views

kayleyusher

2 hours ago

Hi Florencia,

You're incredibly brave and determined, despite the enormous health burden! I wish it wasn't so difficult to get quality arthrofibrosis treatment.

It will be nice to talk via email.

Kayley

This post is from a suggested group

kayleyusher

February 16, 2025 · posted in Public

FDA Approves Non-Opioid Treatment for Moderate to Severe Acute Pain

The U.S. Food and Drug Administration has approved Journavx™ (suzetrigine) 50mg oral tablets, the first drug approved in a new class of pain management medicine. Suzetrigine was the topic of the blog "A New Type of Pain Pill", see https://www.arthrofibrosis.info/post/a-new-type-of-pain-pill

Although suzetrigine has only been approved for treating acute pain, Vertex are investigating it for the treatment of peripheral neuropathic pain, painful diabetic peripheral neuropathy, and painful lumbrosacral radiculopathy. It may become the new standard for post-surgical pain.

Kayley

36 Views

This post is from a suggested group

Joanna Sherman

November 29, 2024 · posted in Public

Post surgical treatment

My husband developed arthrofibrosis after TKR. He went in to remove some scar tissue to improve his range of motion and developed a deep tissue infection from the hospital. This led to a debrinement procedure to remove the infected tissue along with several pounds of scar tissue. After six weeks of IV antibiotics and six months of oral antibiotics the infection was still present. Then they removed the hardware, infected tisssue and put in a temporary knee. We then discovered that his original knee was too large and not placed properly causing his leg to face outwards. The surgeon reshaped his tibia and femur and corrected his gate. After six weeks of IV antibiotics the infection was gone. Three weeks ago they removed his temporary knee and put in the permanent revised knee. Under anesthesia they were able to get his knee to 110 degrees. They did adjust his patella…

72 Views

kayleyusher

2 hours ago

Hi Joanna,

Thanks for your message, your husband has has been through so much!! You're probably aware that I'm not a clinician, and I can't give medical advice, but I can share my thoughts based on the science and my experiences.

I'm glad that your husband is using CPM, the more that he can do this in the early post-operative phase, the better, some people sleep on it to prevent the adhesions and contractions that are particularly strong in the early post-op phase. However, it is Really important to do CPM in the pain-free range, it's not intended to force range of motion, and if it makes the knee unhappy he should back off. Some discomfit is OK, you'll find more about what I mean and other good info about CPM on this page https://www.arthrofibrosis.info/cpm

Your husband has likely been advised to keep icing and elevating as well, and to use crutches to support the healing joint. The period of time that people need to use these therapies varies with the individual, and how the knee feels is the best guide. Some people need to be on them for several months, and there is no downside to this, apart from inconvenience.

Please don't be tempted to rush or force the knee in any way, his biology is in total control and the best approach is to keep it as happy as possible. It will take time (many months) to settle the knee and this can't be rushed. I suggest that anything that makes the knee unhappy during, or afterwards, is stopped for a time. It's not possible to build muscle while there is a lot of pain and inflammation, and exercising the affected leg will likely cause worsening of symptoms, at this point in time.

Scar tissue is a normal reaction to surgery and your husband should expect that some will return, along with some reduced range of motion, but this is normal. Please don't let anyone try to forcefully bend the knee (or straighten it), even minor tissue tears are a powerful stimulus of fibrosis. The IAA believes that the only one who should have "hands-on" should be the affected person, because only they can feel the limits of their range of motion.

Your husband may benefit from a telehealth consultation with one of the most experienced arthrofibrosis physiotherapists in the world, Sebastiano Nutarelli. His contact is info@eukafcenter.ch

Many other physiotherapists don't understand arthrofibrosis pathology and believe that they have to force "compliance" of the joint, which I feel is a very dangerous approach, and we're trying to counter this idea.

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

Kayley

This post is from a suggested group

October 3, 2024 · posted in Public

BPC-157

Hello,

I've been reading about the healing properties of the peptide BPC-157. While I realize that large scale clinical trials haven't been performed on human subjects, I would be open to trying something that helps with knee pain. I have advanced PF arthritis and when my knee flares up I have difficulty with walking and the activities of daily living.

https://pubmed.ncbi.nlm.nih.gov/34324435/

I have AF in my Hoffa pad following a MACI/TTO surgery so while I have full ROM my patella tendon is scarred down and I have a lot of scar tissue under my knee that is pulling my kneecap down (patella baja). While most of the studies I read have been positive I'm concerned that this could make AF worse.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6271067/

As it's not yet FDA approved the doctors that are prescribing it are generally "wellness" types that have no experience with AF so I wanted to ask the…

50 Views

kayleyusher

2 hours ago

Hi again Greta,

It's difficult to find quality studies on BPC-157. The great majority of papers are from a single group, who do not explain the mode of action. However, I would be extremely cautious about trying BPC-157, since its reported activities such as increased angiogenesis, proliferation and activation of fibroblasts and increased collagen formation and maturation are all central to fibrosis pathology.

Unfortunately the paper in the first link is, in my opinion, very poor quality, and I simply do not believe the claim that this compound is able to re-grow cartilage. I have not looked at the quality of the second paper, but the finding of increased healing in mice, plus the pathways that are activated, again give cause for concern in the context of fibrosis. There has been a lot more focus on improving healing (for ulcers) rather than damping it down (for fibrosis) in research, and I'm always careful about therapies that improve healing as a lack of healing is at the opposite end of the pathology spectrum.

I personally would also be careful about taking a "wellness" compound that is not regulated and quality controlled, since there is a long history of dangerous compounds and unpredictable levels of active ingredient in this type of thing.

I'm sorry I can't be more positive. Please do ask if you have more questions.

Kayley

This post is from a suggested group

Daryl Mcdonald

September 4, 2024 · posted in Public

PXS-5505

I was wondering if there has been any recent updates on PXS-5505 and if it is available yet.

Also is there any evidence that Relaxin2 has been used to treat arthrofibrosis.

thanks

Daryl

50 Views

kayleyusher

2 hours ago

Hi Daryl,

Unfortunately, we're still looking for funding to run a clinical trial on PXS-5505, so it's still some years away.

Yes, there are studies using animal models of arthrofibrosis and cell cultures that show Relaxin 2 is effective and safe, but so far as I know it doesn't yet have regulatory approval for sale. This paper is freely available if you want to read more: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9948766/

The researchers used an encapsulated version so that multiple injections into the joint weren't needed.

Let me know if you have further questions.

All the best,

Kayley

This post is from a suggested group

marionymm

July 1, 2024 · posted in Public

Why no non aspirin nsaids?

I found the dos and donts from this site and was reading that I should not take any non aspirin nsaids? I am prescribed arcoxia, which is not aspirin. Why should I not take it since it’s antiinflammatory.

Also does anyone know about the 3 stages and timelines of AF? can’t find anything on the internet as to when or how long these stages last. I am 3 weeks post surgery and experiencing problems since day 7 and 9. thank you so much 🙏

102 Views

marionymm

2 hours ago

I would like to continue but they charge 700 per 2 weeks and I doubt my insurance will want to cover more. It does feel tight at 90 degrees and after an hour I worked my way up slowly to 120. If after a couple of days I feel like loosing rom I will rent privately. My knee is worth it. Thank you so much.