Jackie's arthrofibrosis story

At the time, I was fit, healthy, and within the correct weight range, so when my orthopaedic surgeon told me I needed a knee replacement, I was upset but confident that my fitness would help me recover quickly. I expected to need just 6 to 8 weeks of downtime before returning to my normal routine. My surgeon explained the statistics in detail and insisted I take a month to think it over before going ahead. I never imagined I would be “the one” to experience complications.

On the day of my surgery, I was the last patient on the schedule, so by the time I came out of theatre, it was evening. I stayed in bed until the physio saw me the following morning. I managed to walk a little and do some heel slides, and everything seemed fine. I was referred to outpatient physio after my release from hospital, but it soon became clear that my range of motion (ROM) wasn’t what it should be.

My physio referred me back to the surgeon, who recommended manipulation to break down any scar tissue that might have built up. I had the manipulation, but the same problem persisted. A few months later, I had another manipulation, but when that also failed, it was decided that I needed a total revision.

I underwent the revision surgery with a different surgeon at a different hospital, exactly 50 weeks after the initial operation. This time, I ended up in hospital for a month because my wound wouldn’t heal. No one could explain what was happening with my body, only that every time I bent my knee, the wound would weep. It was incredibly distressing. Eventually, the wound healed, and I was discharged with about 80° of bend, but soon after, the stiffness returned, leaving me back at square one.

I requested my medical files from both hospitals and had them independently reviewed, as I was at a complete loss as to what was happening to me. The surgeon who reviewed my case suggested that the most likely cause was arthrofibrosis. I actually cried when I read the report because, for the first time, I had an explanation. It wasn’t my fault, despite someone suggesting that I hadn’t done enough exercises and that if I had, I’d have been fine.

Life now is very different from what it used to be. I’ve seen numerous consultants, but none have been able to help. I’ve been told that the only treatment available is pain management. I truly believe that greater awareness and knowledge of arthrofibrosis could have given me a better outcome, but it didn’t seem to be on anyone’s radar at the time.

As a result of my bad gait, I’ve since had to have a hip replacement. I stopped going to the gym because it was too depressing to realise I couldn’t do what I used to. Instead, I took up sea swimming (the sea is very cold here in Ireland!). I now walk with two crutches, as walking unaided is too painful, but I try to walk a few kilometers every day. Unfortunately, I don’t have enough flexion to cycle. Everything becomes more difficult when you can’t walk properly.

I receive regular physiotherapy for the various conditions this has caused, and I have an excellent pain management consultant who helps me manage the pain as much as possible. Sadly, this involves constant injections and daily opioids. I’ve retired early to focus on making the most of my life. There have been some very dark and difficult times over the past seven and a half years, and I have no doubt that, without the support of my husband, family, and a very good therapist, I wouldn’t have made it through. There were days when I couldn’t see a way forward.

Gradually, I reached a point of acceptance, which has been a huge factor in my recovery, though acceptance doesn’t mean giving up on finding a cure. I continue to search for options.