Cathy (Sweden, age: 49)
9. Sept. 2024
My life changed dramatically in February 2019, when I was 44 years old. During a skiing accident, I broke my knee and had surgery three days later. I was given a knee brace and rehab instructions, but when the time came to remove the brace, I discovered that my leg was stuck at a 70-degree angle. I couldn’t bend or straighten it at all.
Note from the IAA: For privacy reasons, the name Cathy used in this story is a pseudonym.
The following weeks and months were filled with intense physical therapy. I was forced into excessive training, often lying on my stomach with weights hanging from my foot to force my leg straight. The pain was excruciating. My physical therapists would even put their weight on my leg, trying to push or pull it into position. Despite all of this, nothing worked.
Around the same time, I developed a frozen shoulder—something that progressed so quickly it was dismissed by some medical professionals as unlikely. My next surgery took place at the end of May that same year. After the surgery, I was told that even under anesthesia, it had been impossible to move my leg. In a strange way, that was a relief—it wasn’t that I wasn’t pushing through the pain enough, my body simply wouldn’t cooperate.
Following that second surgery, I was able to regain full flexion in my leg thanks to CPM (continuous passive motion) therapy and a rigorous exercise regimen. But as I worked on my flexibility, I began to feel scar tissue building up. My patella also started to catch in an uncomfortable way, with every release accompanied by an unsettling sound.
Due to my inability to fully extend my leg and the severe pain I experienced when standing or walking, I underwent two more surgeries, making it a total of four in just a year and a half. After the fourth surgery, I was told that no matter the outcome, I would need to wait two years before any further evaluation, in hopes that the condition might resolve on its own—similar to how a frozen shoulder can heal over time.
Unfortunately, after the fourth surgery, I didn’t improve. I fell into a deep depression, but I clung to one last hope: a total knee replacement (TKR). For the next two years, I rehabilitated my shoulder and tried to do the same with my knee. Once the two-year mark passed, I contacted my orthopedic surgeon to request a new evaluation.
The results were devastating. After an MRI, I was diagnosed with patella baja, a condition where the kneecap is abnormally low. I was told there wasn’t much they could do to help. Realizing that my last hope for improvement was gone was incredibly hard to accept.
At this point, my shoulder had improved, and my depression had started to lift. I made the difficult decision to adjust my everyday life to accommodate my disability. I cannot walk due to my patella blocking movement, and standing up is extremely painful, so I only do it to transfer between my wheelchair and chairs or the sofa.
I try not to dwell too much on the past or worry about the future. It’s tough accepting that my life has completely changed, but I focus on living in the moment. I don’t know what the future holds—maybe one day, a cure will be developed. How I would love to walk hand-in-hand with my husband, to stand up while cooking, or simply take a shower without assistance. I long to dance again, or attend events without the fear of being bumped into by people who don’t see me in my wheelchair. I dream of traveling without constantly checking for accessibility, and most of all, I wish I could one day hold my future grandchildren in my arms.
Arthrofibrosis is a real struggle, and its impact extends far beyond the patient.
My husband and children’s lives have been deeply affected as well. This condition needs to be recognized for its severe consequences, and healthcare professionals need to listen to patients more closely. Arthrofibrosis should be treated with care and compassion, not through aggressive methods that can cause further harm.
At least my case has raised awareness at my orthopedic unit. While it may not change my own situation, I take comfort in the hope that it might lead to better outcomes for someone else in the future. If that happens, then all of this wasn’t for nothing.