So this post is dedicated to PVNS (Pigmented Villonodular Synovitis) and its cure, the rare aggressive tumour I was diagnosed with when I was 18 years old, whom only 1.8 people per million suffer.
This shit of a disease is really hard to kill, it takes hold with its little microscopic tentacles and invades every space of your bone and soft tissue just because it can. The best way I can describe it, is that it literally eats you inside out, disintegrating bone and tissue as it grows..... and I was cured.
Not many people can say that they no longer suffer from PVNS and I am grateful every day that I am free of its destruction.
In 2000 I was diagnosed with PVNS via xray. My surgeon had me in the operating theatre within 4 weeks of first seeing me. The tumour was curetted from the top of the femur and from within the socket. My femur and socket were then reconstructed with artificial and real bone graft. I donated bone to myself as it was safer than receiving bone from the bone bank. The pathology from this surgery in 2000 confirmed it was PVNS but they had removed it and I was sent off on my merry way.
But i wasnt gone for long..... it grew back almost immediately and at a very rapid pace. Please read my blog about the re-occurrence here http://iwearmyscar.blogspot.com.au/2012/03/recurrence-of-pvns-my-total-hip.html
In the same blog, I outline what they did in the surgery to cure the PVNS.... I have copied it below for you
'My hip had been replaced, they dislocated the joint and placed a small frozen crystal that was -150 degrees Celsius in my socket cup. What this then did was freeze and kill the PVNS in the immediate joint, as well as reach a temperature of -40 degrees Celsius on the inside of the pelvic wall.
This was in case the PVNS had broken through to my soft tissue on the inside of my pelvis and could be killed before doing any more damage. (by the way, it never broke through, so I was lucky to have the PVNS contained in my hip joint only)
The freezing meant I had to have a Total Hip Replacement (THR), my cartilage was now destroyed and mechanically they had to put me back together again. They had to work like angels to rebuild what the PVNS destroyed.... and they succeeded!
They cut off the top of my femur which was practically rotten with PVNS. Then they drilled a shaft down my femur (thigh bone). Here my stem was fitted and locked in. Attached to the top of my brand new stem, my new titanium neck was screwed in, this would then hold my ceramic ball which would match my ceramic lined titanium socket cup. Before they put in my socket cup however, my pelvis had to be "patched up" due to being destroyed by PVNS.
After removing the spare bone from the back of my left hip (everyone has spare bone there), they added my own bone to my pelvis, just like repairing a hole in a wall. Once set, the socket was fitted. 5 pieces of foreign material later and my hip was one again.
11 frozen sections were taken in and around my joint during theatre, all of which came back clear of PVNS. 80 dissolvable stitches locked out the PVNS to the outside world and my hip was now protected from this bone eating monster'
All of this was 15 years ago and I am still PVNS free. I can only put it down to the cryosurgery that was performed.
And just like the eradication of my tumour, there is nothing more for me to say about my time with PVNS - it is gone and I am cured. I am grateful and wish every day that those who still suffer with PVNS will be cured of it one day too.
Here is a photo of the top of my femur after it was removed for the hip replacement! And this was after it came back from the first open synovectomy & curetting.
Disclaimer
Please know that this is my story and not necessarily the cure for everyone. Cryosurgery causes damage too and the way my PVNS was located in my hip joint allowed for successful cryosurgery treatment and the implantation of my hip replacement.
I dont know what cryosurgery would do to foot, knee, elbow or other joint where smaller bones are present, so please understand that this may not be the solution for everyone. Please discuss your options with your surgeon.
I have had ongoing issues with my hip replacement which isnt related to PVNS, so I wont go into that here.
Wear your scar knowing it is the proof you showed up for the fight! If you are interested in following me on instagram you can do so here www.instagram.com/iwearmyscar @iwearmyscar
Bel x
