I was diagnosed with diffuse PVNS in 2009 after several visits to orthopedic. I had an open synevectomy and unfortunately it came back 1 year later. I had another open synevectomy for the front they considered the back as well but they thought it would be too long recovery althouth they saw it in the back as well. For those of you that had have constant reoccurrence yo know that it is very difficult to get the back because of all the nerves etc without open synevectomy posterior. After the second open synevectomy they suggested radiation because of how reoccurring mine was. I did that for 6 weeks. I got it back in a year and a half with full swelling and pain all on the from of my knee but constant shooting pains in the back of my knee (up and down the leg) was also a sign..that it was back. I ended up trying a special arthroscopic surgery, the 2 knee manipulation because my knee wouldn't bend. Obviously again they couldn't go too far to the back of the knee but they scraped most of the front out. I was finally blessed.. 3 years with no reoccurrence until now ( at least I think). I have been getting pain up and down my leg in the back, there is a little ball in the back of my knee, but no major swelling in the front so for me that is weird. But it feels just like before..back to limping and pain...
The new doctor couldn't aspirate it because of the area in the back. Sent for another MRI...this Monday.
I remember every doctor I have gone to in the past few years saying if it gets tooo bad in the back that I will have to do the open synevectomy posterior.
I have had several conversations as well regarding the chemo they have out now, but I am not willing to go that route.
Has anyone had it come back without huge swelling in the front and similar to my current symptoms.. pain shooting up and down and back to limping with a little ball in the back of my knee???
The doctor I have to start the process with is always the orthopedic , but then it gets escalated so I literally told him the kind of MRI I needed (with and without contrast). He was nice and understood I had more experience with this disease then the 3 patients he has seen over 15 years with only 1 occurrence so I understand we have to see oncologists for this.
I am just getting myself prepared for the next one. I knew it would always come back, but this way is a little confusing to me.