22 wks post op and 4 weeks post manipulation. Finally I'm beginning to feel more like my normal self. I received good news today... I'll be finishing with physical therapy next week and I also got clearance to return to work. Steve has been so very supportive and keeps reminding me that my health has to come before anything else.
There have been many parts to this PVNS journey. I began in December with a diagnosis that few doctors understood. Fortunately I have a background in the medical field and I know how to research. Shortly after starting my research of this rare disease.... I realized that it would be so helpful if there had been a research site solely focused on PVNS so I began this blog. As my knowledge grew so did this blog and the many links. I eventually found the Facebook site (PVNS Is Pants) and it has provided much needed support and guidance from other sufferers. It is there that I learned the human factor and not just the cold hard facts and statistics surrounding this disease. I was very fortunate to have found a top notched ortho oncologist surgeon in my own back yard. I then had an open synovectomy on my knee for the diffuse form of pvns. Making the decision to have radiation did not come easy. It is costly and has meant 2 additional months off work. I am one of the very fortunate ones that could afford to be off work for so long. It hasn't been easy financially or psychologically but it was doable. The RT caused excessive scar tissue to form which required a manipulation under anesthesia which also meant another 6 weeks off of work. As I said it has been a journey... one that I never want to take again. I have made the decisions to attack this disease as aggressively as I could even though in the end I has meant taking 5 months off of work. After extensively researching pvns I personally feel that your best chance of getting rid of this disease is to kick the shit out of it in the first round of surgery and to destroy it's microscopic remains via radiation therapy. There are no guarantees but I'll take 10-20% recurrance rate vs 40+% any day. I respect and understand that not everyone has this option for a variety of reasons and may feel differently.
I've been going to physical therapy for four months and I just received news that I only have 2 more sessions. I can't stress the importance of finding a physical therapist that has compassion but encourages you to push through the discomfort and meet your weekly and monthly therapy goals. Of course I will need to continue going to our gym and working on my stretching and strength.
I continue to have problems with swelling, stiffness and discomfort but it sounds like it is going to be about a year before my knee feels more like normal.
