27. Dez. 2025
My arthrofibrosis story began at the end of 2017. I was 47 years old when, at my surgeon’s suggestion, I underwent bilateral knee replacements—a decision I now know was my first grave mistake. I had no idea the level of pain I was walking into, and there was no pain management plan in place, which became the second.
The pain was off the charts. For seven months, I lived on a fentanyl patch and Dilaudid just to breathe and sleep. The pain came in waves like fire. I lost 30 pounds and looked like an extra from The Walking Dead. I am beyond grateful that I did not develop any addiction issues.
I am somewhat of an anomaly: my left knee, which received a partial replacement, healed perfectly. My right knee—a total knee replacement—turned into a nightmare that completely upended my life.
Over the past nine years, I have had four lysis of adhesion surgeries. My arthrofibrosis is chronic and relentless, recurring roughly every two years and leaving me crippled with only 25–35 degrees of range of motion. After surgery, I can usually reach about 95 degrees, but I have never been able to maintain it. I have felt stuck on a hamster wheel with no end in sight.
The most devastating part is that I did not even know I had arthrofibrosis until two years ago. For years, I was dismissed and gaslighted by my orthopedic surgeon. When I finally confronted him, he admitted that he does not talk about or publish on arthrofibrosis because he does not want patients from around the world seeking him out—and that arthrofibrosis patients are “the bane of his existence.” That admission first gutted me, and then infuriated me.
I was also mismanaged in physical therapy. In 2018, shortly after my total knee replacement, I was pushed so aggressively that I heard and felt a rip. That moment marked the beginning of serious trouble. All along, I knew in my gut that something wasn’t right, and I kept asking the right questions—even when no one was listening.
Once I finally had a name for the disease, I dug in. Two years ago, I began researching everything I could. In 2024, after my most recent scar tissue removal, I pushed for low-dose radiation therapy within hours of surgery to see if it could help prevent recurrence. One year out, my range of motion is holding at 90–95 degrees. Time will tell—year two is typically when I see rapid loss—but this is the longest I have maintained range in nearly a decade.
In a previous life, I was a runner and a long jumper. Losing my mobility—and facing the reality of surgery every two years for the rest of my life—sent me into a deep depression. At my lowest point, I even considered amputation.
Then everything changed.
I began working with a rheumatologist who has been studying arthrofibrosis patients and placed me on a new treatment protocol. I am now taking an advanced anti-inflammatory medication along with a brand-new, non-narcotic pain medication that has no side effects for me. After appropriate blood screening, these medications have been a complete game changer.
For the first time in years, my pain is manageable. I can walk, work out, and do my job again. I am a photographer, and after a shoot I used to feel like I needed to be put in a body bag for a week. I couldn’t even go for a walk without crying. Now, while there is still swelling and some pain, it is nothing compared to before. I have only been on this protocol for a month, and I honestly feel like I am pinching myself.
At this stage, my doctor and I know the goal is not a cure—it is pain control and extending the time between surgeries. And that alone feels like a miracle.
I am also seeking counseling to support my mental health. I needed a new perspective—one that allows me to acknowledge and process what I have lost, while learning how to forge a new path forward. Embracing my arthrofibrosis journey has been essential so that I am not constantly overwhelmed or mentally crippled. This work has helped me regain a sense of balance, resilience, and agency in a life that looks very different from what I once imagined.
One important note: about two years ago, metal hypersensitivity testing for orthopedic implants became available. I strongly believe this should be mandatory before any implant surgery. Nickel sensitivity can trigger or worsen arthrofibrosis. I tested borderline reactive and am now considering revision of my total knee replacement to a hypoallergenic implant—but only after obtaining second and third opinions and pursuing consultation at a specialized knee center.
What I have learned through all of this is simple and hard-earned: you must advocate for yourself relentlessly. Do the research. Ask the uncomfortable questions. Push when you know something isn’t right. There is no cure for arthrofibrosis, and no single treatment works for everyone—but progress happens because patients refuse to be silent.
For the first time in almost a decade, I have something I thought I had lost forever: hope.