I am so happy to have found this board and others that are similar. I am 28 years old, and half 2 young children. I started having trouble walking- the pressure was sending a sharp pain straight through the top of my foot. Within about a week a small bump showed up on one side of my right ankle. I was put in physical therapy and they did ice massage (if you have never had an ice massage, it is not as nice as is sounds) on the swollen area and ultrasound- with no reduction. I was then sent to for MRI where it was determined I had PVNS, and a 2 X 2 mass that had just started entering my ankle bone. I was sent to a pediatrist, and when she mentioned surgery and having a surgeon assist- I became worried, and wanted a second opionon. I went to an Orthapedic Surgeon, and he wouldn't touch it. He referred me a foot and ankle specialist and am awaiting my consultantion.
My issue is, what started as a walnut size area - is baseball size, the other side of the ankle has a walnut sized mass, the back of the ankle has a small spot, and the side of my foot also has a mass. It has gotten this much worse in about 1 month- appointment is not set for 4 weeks. On top of that, I started getting pain in my other foot while walking, and now have the same small mass on that ankle.
I can't work more than a couple hours at a time, because if I am not laying down and walking around it swells so much- I can't feel my toes. In addition, the action required by that ankle to drive feels similar to sticking a knife through my foot. My comfort is in the fact that while I may need to wait- I have one of the best, experienced with PVNS, Orthapedic Surgeons in WI, trying to fix it.
I have seen other stories, regarding PVNS, and it is so reassuring that I am NOT alone. This is an odd disease that most Drs do not know much about, it is scary, painful, and in my case has grown fast. Any PVNS patients on here that did the radiation therapy???? Did it work?