I was diagnosed with pvns in jan of 2011. I am a 27 single mother from GA. Six mo prior I started having slight stiffness and pain and then suddenly my knee swelled up with fluid very unexpectedly. MRI showed I had large amounts of diffused pvns thought knee which has spread into my calf. I had arthroscopic surgery in Aug 2011 which seemed to really help yet 3 mo later my knee was swollen again and another MRI showed the tumors had returned. I am seeing some of the best dr in the southeast and they have told me its the worst they have ever seen; very discouraging. Contemplating more surgeries but not sure if they are worth only a couple months of relief. I am unable to flex my quad or calf anymore, I have constant muscle cramps in my leg and trouble sleeping due to the pain. I have taken 800 mg of ibprophen for the last 2 yrs but doesn't give much relief anymore. I wish there was more info on this disease I would try anything at this point. It could be worse could be cancer but no one knows the pain of this rare disease unless you have it.