Mick's arthrofibrosis story

I am 65 years of age and in overall good health. I had a meniscus operation on my left knee around 12 years ago. The recovery was not good, and my left thigh was left weaker than my right thigh. However, I was told by the surgeon that I would need a whole knee replacement within 18 months (I lasted 12 years with care and caution about I treated my knee). Finally, I was having considerable issues with walking and at times locking up, and at times feeling pain, so I decided to have my knee reviewed and I was informed by a new surgeon that a ½ knee replacement was all that I was required. What a bonanza! Or so I thought! I was going to be up and back playing golf and walking well within 4-5 months. That would do me for the next 15-20 years.

I went into hospital for 4 days and then to a rehab clinic for 9 days. All seemed to be going well, but early on I noted to the physiotherapists that my quadriceps were not activated, and that my knee seemed very swollen. Their answer was to take it easy and that it will come good. As an ‘old school’ man, I got into my exercises with commitment and anticipation of improving after a few weeks. Seeing and feeling progress in anything you put time into is critical to one’s well-being of mind and body. When I left rehab, I went into post-rehab attendance of 2 days per week.

After all rehab sessions I was left in pain, very swollen and uncertain of what was going on. At the beginning of week 4 out-patient rehab, I could no longer attend rehab due to the negative impact, not only on my knee, but on my whole body. My knee was getting worse, when it should have been improving. I knew something was terribly wrong! I commenced my own research, and I figured out that I must have Arthrogenic Muscle Inhibition (AMI). I met with my surgeon and he had never heard of AMI. I was hospitalised as an ‘urgent’ rehab patient for 2 weeks at a different hospital, due to the trauma of not only my knee, but also my body. During my rehab it was confirmed that I probably had AMI. None of the PT’s had heard of it. Following hospital rest and rehab for 2 weeks I was released, but with no set rehab plan in place specifically targeting my AMI. I had a total shutdown of my quadriceps, and it took me 4 days in my 2nd hospital rehab to even get a flicker of muscle activation in my quadriceps. These were certainly worrisome times, as I thought that my muscles would not activate again and thus a total loss of function.

Following my second stint in a rehab hospital weekly rehab visits were arranged at the. After the second visit I was in such a mess I did not go back. It was all too much and not tuned in to my condition (that is my belief). I found an OT who specialises in neuromuscular devices and treatment, and I was able to sort out a Neuro Muscular Electrical Stimulator (NMES), which was a blessing. I could not figure out why this was not recommended when I was in rehab.

A few weeks passed and I went back to my Surgeon, who informed me that I had Arthrofibrosis as well. So, I felt I had a double whammy of knee complications. The surgeon wanted to do a Manipulation Under Anaesthesia (MUA), the following day. I could not understand why someone would want to forcefully bend a joint which is swollen, inflamed and sore. Thankfully, I rejected the offer.

Looking back over my journey of 4 months I certainly believe that the physiotherapists, surgeons and doctors should be much more informed and on-the-ball when it comes to Arthrofibrosis and AMI. In my opinion, a change of rehab interventions could have made all the difference in my recovery. But this did not occur. This, of course, is very concerning, and I went through the Australian private health system. HOW COULD THEY NOT KNOW? And, secondly, why did I have to do all the research and then inform the clinicians about these complications, and some of the treatments I should have?

It has been a very difficult journey, both physically and mentally. During the past 4 months I have had 4 eye styes and 2 abscesses on my body, both of which I have never had before. I still use 2 crutches to walk (I walk around a mile every day on my crutches), along with being back at work 5 days a week (all my sick leave was used up). By the time I get home I can only rest and ice my knee. So much for a social life

The physical challenges have been great as I am 65 years of age. However, I do around 600 upper body rotational exercises every day and this has helped to maintain some kind of balance in my body and mind. I believe it is important to have another focus other than your knee.

Exercises/activities I try to do every day include Icing (3 to 4 x), NMES machine, walk one mile, bending exercises for my knee (as much as it permits), glute holds, ankle rotations, squeeze a soft ball 50 times a day, massage daily, and rest. My mindset is that I want to come back stronger than ever. However, given the debilitating condition I am in, I am also mindful that I will, likely, never obtain full functioning of my left knee again. Yes, I have had some very bad days, and I feel that my body is still recovering from the trauma it is has gone through and still in. However, being kind to my knee, and trying to find humour in it all is important for me. 

Reading other stories has been very useful and I can only hope that my story helps someone out there.