Liselotte's arthrofibrosis story

Note from the IAA: For privacy reasons, the name Liselotte used in this story is a pseudonym.

My knee was to be treated first, and various tests were conducted, and I received multiple cortisone injections. In September 2022, a plica was removed arthroscopically, and there was a lot of synovitis medially and around the ACL, which was also removed.

Immediately after this procedure, I had to start loading the knee and begin physiotherapy. I had excruciating pain, and it only got worse in the weeks that followed. My surgeon and physio had no idea what the problem could be and gave different advice almost weekly. According to the physio, it was important to strengthen the muscles as much as possible, so I tried to do that. Every night I lay awake from the pain and was dependent on my wheelchair. If I took three steps, my knee would lock up, and I had to "crack" it loose. Straightening and bending beyond 90 degrees was impossible.

This uncertainty caused me a lot of sadness. After about three weeks, I already knew it was coming back.

In June 2022, another MRI was done, which showed that I had arthrofibrosis in my Hoffa’s fat pad. My surgeon wanted to remove this with a new arthroscopy, which took place in August 2023. In my knee, he found a "spider web," and everything was stuck together. He was able to remove almost all of it. The physiotherapist at the hospital said, "You have a complicated knee, and we don't really know how to proceed." They advised me to try everything based on pain tolerance, but it was important to start moving and loading immediately. This uncertainty caused me a lot of sadness. After about three weeks, I already knew it was coming back. I felt that straightening was becoming more painful, and bending was impossible again. My surgeon is determined to do everything he can to make me mobile again and relieve my pain and referred me for a Platelet-Rich Fibrin (PRF) treatment last April. Unfortunately, without result.

Meanwhile, more than 2.5 years have passed, and I am really bound to my wheelchair. Unfortunately, I also have an injury to my shoulder that could normally be fixed with surgery, but no surgeon is willing to do it now. As a result, I can hardly use crutches. My whole life is different, and I can no longer do the things I always did. Besides experiencing a lot of pain and discomfort, I also feel very guilty towards my family. Their lives have also been turned upside down. My wonderful family (husband and two children, aged 12 and 15) are my biggest support. We try to stay as positive as possible and do a lot of activities, but adapted ones. Besides my family, I have a great support system who are always there for me, and I have help at home. However, I often get comments from people who are not close to me, such as, "But it can't be that complicated," "You don't see anything wrong with your knee, so I think you just need to push through," "I've never heard of arthrofibrosis! Could it be something else?" or "They should just give you an artificial knee, and you'll be fine." This makes me feel like I have to defend myself. Sometimes I have days when I feel sad because of the pain and dependency. I also have moments of frustration when I just want to be my old self again. Luckily, I am mostly very positive and can't imagine that nothing more can be done.

I shed tears of joy when I found the IAA website, and all my questions were suddenly answered. Finally, there was the information I had been searching for so long. Next week I have a meeting with my surgeon, and I will share everything with him. There is so little known about arthrofibrosis, and it would be great if there were also specialized doctors and physiotherapists in the Netherlands. I will definitely flood social media with information on September 9th, on the Arthrofibrosis Awareness Day, because this needs to change!