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?
About Me
- K.
- I'm just like you, really. Just trying to make sense of life and my place in it--and with a sense of humor when possible.
5 comments:
Hello there. Im one of those PVNS victimes, but since i live in Norway there is probably only 2-3 pr year that get the diagnose. Ive been reading tallgals blog, and now i have bookmarked yours aswell. Ive been under the knife 5 times in my left knee. Its a shitty illness, but thats life, have to do the best out of it.
Hey, Torben.
5 times? You must have the diffuse kind of PVNS. So sorry. That's gotta be a drag. I've read that radiation treatment seems to work on the recurrent PVNS. Five surgeries seems excessive. Like you must be on crutches more than not! Good to hear from you. Hang in there.
Im not on crouches thank god. I walk pretty normal, and can even run short distanes. And yes i think i have the diffuse thing of this shait. But after the fifth opr. i said to my selfes, that was the last one. Because im not sure if its the diesiese thats killing my knee, or the surgery its selves. But comperde the state i was in back in april 2004, im pretty okey now. I have been treated with yttrium 90 twice, in 2005 and 2007. both times after major surgery. But im okey, and i can live my life pretty okey i guess.
I'm a little late to the party, but a new member of the PVNS community! Most of the info I'm reading is in relation to knees, but mine is in my elbow. I'm just starting my research in preparation for my surgery in early July, so if you have any suggested resources, lay 'em on me!
I'm a little late on the commenting too, but I was just diagnosed with PVNS last wednesday when they operated on my knee. Currently just icing, elevating and trying to get off the crutches little by little! Thanks for your posts Karen, they have helped lighten this whole thing a bit and are encouraging to know you recovered so quickly! Thanks for sharing!
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