I have been diagnosed with PVNS Pigmented Villionodular Synovitis - in short a tumour in my elbow joint. I have researched so much about this disease as most doctors sadly know nothing as it is that rare. Usually it starts in knees, and hips but has been known to form in toes and shoulders....elbows however....are so rare its crazy. Just my luck. I have had some of the tumour removed. It was diffuse ( widespread) throughout the elbow and around ligaments, tendons, muscles etc and they were unable to get all the tissue so it is regrowing (slowly) but regrowing none the less.
I am now experiencing other joint problems with similar symptoms. I am very concerned about what is coming next. I know that chemo is possible next, but the thing I want to know is WHAT caused this thing in me and how can I heal myself. I know that it eats bone and tissue and joint replacements are also on the agenda at some point if more damage occurs.
My elbow has good movement (due to me having an amazing pysiotherapist after surgery) it is however starting to lock again...so I know that means tumour is growing more than it was. My shoulder is now an issue...no full diagnosis yet but questions on it at present for sure.
So if anyone can help me I would be indebted. This is a tough journey and I have been pushing hard to keep myself going as well as my career in music but it has been tough this past year to remain positive.
Hope you can help
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