PVNS, My THR and More Surgery

My first post to this blog starts as I am about to have my scar opened for the 4th time in a few days time!

I am a 29 year female who had her hip replaced at the age of 19....

When I was 18 I was diagnosed with pigmented villonodular synovitis (PVNS) .... a mouth full huh! It’s a rare, bone eating monster which in my case also attacked at my soft tissue which is even rarer. The stats for this thing, is that only 1.8 people per million in the world have PVNS.... so I’m not 1 in a million but close enough :)

As I have more time in the next few weeks I’ll explain how it all came to fruition.... so I’m sorry that I have started explaining things a little backwards.... I guess it’s a story being told which still doesn’t have a finish and started such a long time ago.

I wanted to write a blog to be able to help others that have to wear their own scars, especially those who are young and even possibly having to go through the challenge of having a joint replaced.

It’s not easy by all means, but it’s actually not as bad as it seems at times... I consider myself quite a very very lucky person not to be worse off than I am...... I can walk, I am not without the use of my legs, my life is not threatened and if you didn’t know me you wouldn’t even know that I would have this kind of story to tell..... so I hope this helps others see that whilst their own challenging situation is a big deal (because it is) that it doesn’t get you down at the same time. I mean of course it’s going to get you down at some point... but hopefully you can bring yourself back to a positive place and be full steam ahead in living, no sorry.... enjoying your life.

So on Monday I will have my 13 inch scar opened for the 4th time to curette a 2.5cm bone cyst out of my pelvis which has been caused by metal wear particles from the hip replacement I had in December 2001. In July of this year I underwent hip surgery (which was the 3rd hip operation I have had) to do the same thing, but when they opened me up on the operating table my surgeon came across a whole lot of what he thought was PVNS. In theatre they did a frozen section of the "muck" and it came back PVNS favoured, so my surgeon decided that curetting the bone cyst at that time should be postponed because if it was PVNS returning I had bigger problems to worry about. They removed all of the muck, upgraded my ball and socket lining, as you do :), and closed me back up...

The next 5 days were horrible, I didn’t realise at the time, but I was super super down on life.... I’m normally quite a positive person and I thought I was high in spirits, but after I found out the good news I couldn’t believe the weight that lifted off my shoulders. The histopathology results confirmed that the muck was Tissue Reaction to Metal Wear Particles and not PVNS! Give me tissue reaction any day :)

Soooo now next Monday I am having an operation to remove the bone cyst knowing that the likelihood of it being PVNS is very low. In July they removed "spare" bone from the back of pelvis to be able to fill the hole that will be left after they remove the cyst. This means I effectively donated my own bone to myself.... This is waiting in the NSW Bone Bank signed under my name and means I have no risk of contracting AIDS, Hepatitis or Mad Cow disease from other donor bone... the risk is low from donor bone anyway but this way I have no risk at all.

So that is the start of my very long story and continued journey of having a hip replacement at such a young age along with the complications of being diagnosed with a rare benign tumour.

I’ll sign off for now.... I do hope my first entry to the blog world made some sort of sense.... many more updates to come and my backwards story will be told.....

Wear your scars like a sexy pair of jeans, don’t let them wear you xx