| 30 year old male with Synovial Osteochondromatosis
I am a 30 year old male and was diagnosed with synovial osteochondromatosis in the right hip about 5 months ago. I just went through arthroscopic surgery 3 days ago.
Until yesterday when I found this and other threads on this site, I had not heard any personal stories. All of my research brought me to medical journals and documents. I am very pleased to have found others suffering from the same disease and no longer feel alone in this.
I read many others stories and wanted to share mine here.
About 15 months ago I started noticing a strange feeling in my right leg. I could not cross my right foot onto my left knee one day without a strain. A couple of months later I noticed that I was constantly flexing my quad muscles. Shortly after that, my knee would be slightly swollen and not look or feel right after normal daily activities.
This went on for several months with relatively no change and no pain. In time I developed a small limp, but was still not experiencing any pain. Just a limp with some motion limitations.
I finally went to a doctor and was told I strained my IT Band and to streach and to walk regularly to help it to heal. This was not my issue and neither walking nor streaching helped or worsened the condtion (that I know of).
About 5 months ago my limp was very noticeable and I could not even jog. But still no pain. Just limited motion. Although if I forced myself to run, it was painful, but I did not experience any pain day to day.
I went to an orthopedist and had an MRI done and was then diagnosed with synovial osteochondromatosis in the hip. It seemed very strange because any discomfort I was experiencing was in the knee. But the doctor explained it was referred pain for the issue in my hip.
The plan was set to get surgery, but due to family and work obligations I put it off for 5 months. During that time my condition rapidly accelerated. After a month I began experiencing pain in my knee daily. After a couple of months the pain became much worse and I was constantly having using ice and IBU to manage it. In time I could no longer walk without a cane. In the last weeks leading up to my surgery I could no longer use a cane and was only waking when absolutely necessary and only with crutches. I had to take the last 3 week off of work from my desk job because sitting was unbearable.
I have never experienced this type of pain before. I could not sit, stand, walk or even lie down without terrible pain or at best being very uncomfortable. I didn't sleep more than an hour at a time in the last month.
3 days ago I finally got the surgery. They removed hundreds of loose bodies from my hip, some fairly large. I'm not sure on the count or size just yet but will learn that at my next appointment.
Obviously it is too early to really know how successful the surgery was. But I do feel a great deal better on day 3 after the surgery than I did going into the surgery. I actually have less pain today and more movement than I did the day before the procedure! I can bend my knee straight out to about a 60 degree angle. Before surgery I could barley make it up a step and was in serious pain with each stair.
I don't want to get ahead of myself and say that I have been fixed. There is still a lot of motions that I cannot do and I am still very sore from the surgery. Right now it is hard to tell if the limited motion and soreness I am experiencing is from the surgery or not. The doctors say that because things had gotten so bad, I will likely be in physical therapy for up to one year retraining the muscles to function properly again. They also said that there didn't seem to be much damage done to the joint and it does not look like I will need a hip replacement because of it.
I don't know exactly what the future holds, but the motion I have today is very exciting! The pain in my knee has consumed my entire life these last couple of months and I am very thankful for the small amount of relief I've had post surgery and the hope of a good outcome.
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