Finding out I had PVNS!

I was 16 years old, running around a soccer field as the left wing player. I had the ball perfectly lined up to cross to the centre for a goal. In this case I had to kick with my left leg, not my most coordinated kick, but it would do the job..... I had no idea once I kicked the ball that I would drop to the ground with a horrible pinching pain in my hip. I was down for a matter of seconds, as if I had deliberately dropped to the ground with a fake soccer injury (as soccer players do I guess), then came good and was back up and running around again thinking "that was weird!?!"

I thought nothing of it really and as the weekends went by playing each time the pain was a little worse and lasted a little longer. Then the pain would start to happen when I was getting in and out of a car or on and off the couch at home and I would find myself in a sort of spasm for minutes at a time. So I went to my local GP and explained what had been happening and he said I had tendonitis in my hip and sent me off to the physio who then vigorously massaged my hip and buttock. And boy did I go through the roof!! I only visited the physio once and kind of ignored the problem for the next year or so..... silliest thing I ever did.

A year later and the pain was extrutiating! Mum and Dad decided to take me back to the GP but only to get a referral to an orthopaedic surgeon we knew. He was actually more like a family surgeon, just like you have a family GP, as he had replaced my grandfathers hips several times and fixed my broken arm when I was 2 years old. So the referral was given and we booked the appointment.

As soon as the ortho surgeon had me on the table and moved my leg around, he knew there was something wrong, as if there was something restricting my movement. My first xray was ordered. I refer to it as my first xray, because 12 years later I have counted 31 packets of scans consisting of xrays, CT scans, bone scans, nuclear scans, MRI's - you name it!!

The Xray showed a mass or growth in and around the top of my femur (see pic below) which looked like it had eaten away at both sides of the top of my femur and the inside of my socket. I was immedietly booked in for my first operation with the fear that I could have pigmented villonodular synovitis (PVNS).

The areas circled in red is where the PVNS had damaged my bone.

The green line, is the point of where they removed the head of my femur for my hip replacement in December 2001.

March 2000 and it was confirmed after a 4 hour operation that I had PVNS... My surgeon curetted the PVNS from my femur and packed it with artificial bone graft. Little did I know that it wasnt the end of my battle with PVNS. This was the creation of my 11 inch scar down the side of left hip.

Recovery was painful! I dont really remember my pain relief too well, if anything I would have been having Digesics when needed and I was on crutches and off work for 6 weeks. At the time I was a Food and Beverage Trainee at a hotel in the city of Sydney, so it meant I was on my feet for 8 hours a day. They were soooooo supportive of my situation, when I returned to work, I was put onto light duties. Instead of working the resturant serving 100's of people and then setting the same resturant for lunch, I was placed in the business lounge breakfast suite where I would only need to look after a few dozen people. It meant I could sit down and only worked a 5 - 6 hour a day for a few weeks. As the pain got better, my shifts started to get longer and after working in the business lounge I would then go down to the bottle shop and help out there. Here again I could sit down and do lighter duties! It was a blessing in disguise, it meant I was given more of an opportunity in food and beverage than the other trainee's and it was all because of PVNS!

At the time I didnt understand or learn what PVNS was... it wasnt until this year that I actually sat down and googled pigmented villonodular synovitis and understood how nasty this thing really is. Maybe that was a good thing, that for someone so young I didnt understand and have to deal with the emotional rollercoaster I know PVNS can bring to someone. Its scary when you know you have this bone eating monster inside of you and even an operation doesnt mean its completely gone, its recurrence is quite high! Its such a waiting game and pain is the enemy!

So I remained positive, slightly due to my blase teenage ignorance thinking I was all fixed and could get on with my life... It was like this until 12 months later, the pain came back and we feared the worse, the scans confirmed.......my PVNS had returned :(

.... to be continued

Wear your scar like a sexy bikini! People may stare, but more often than not they're staring at the bikini and not the scar you decided to wear with it that day ;)