Here's how it started

About the PVNS: I was on the phone, sitting in my comfy chair. I lifted my right leg up onto the ottoman in front of the chair and I suddenly couldn't bend it. Way weird. I realized that my right leg had frozen in a bend. Very freaky. I was just about to go to the emergency room when the leg unfroze...just as suddenly as it had frozen. I called my doctor, got a referral to Orthopedics, and got an x-ray. It didn't show a thing. So I pressured the doc to keep looking a little more for the reason (I suspected a meniscus tear or something from a run-in with an aggressive German Shepherd who lunged at me while I was biking a few months back). The doc ordered an MRI...and THAT showed weirdness going on in my knee joint. But the doc looked at the MRI and said he hadn't seen anything like this in 16 years of practice...and referred me to an oncologist. What?!? Isn't that the kind of doctor who deals with the Big C? That freaked me out. But then the doc pointed to a little mole on his neck (a real treat...ya shoulda been there) and said that a musculoskeletal oncologist treats benign and not-so-benign growths...just like this mole on his neck. I resisted the urge to tell HIM to take the oncologist appointment but spent the next two weeks scouring the web about knee problems. I went into my appointment sure that I either had a sarcoma of the knee or PVNS. And, dang, the onc doc diagnosed it as nodular PVNS.

So that's the beginning the story. I'll tell ya about surgery in the next post.

Recovering from PVNS

Hi. OK, anyone out there dealing with PVNS? You know, the joint thing: Pigmented Villonodular Synovitis. It apparently affects 1.8 people in a million, so I'm figuring that there are over a million Americans with this nasty little disease mucking up your lives, too. There don't seem to be many sites that let us chat together about this and our experiences...so let me be among the first.

I'll share more of my story tomorrow.

Meanwhile, lemme know if you're one in a million, will ya?