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 ;)

10 year anniversary of my Left THR

Just a short post as today is the 10 year anniversary for my total hip replacement! Where has the time gone!

So much has happened in that time!! It really goes to show that having a hip replacement for the entire life of my 20's hasn't stopped me do anything.... well jumping & running excluded :)

It seems ironic that I am on crutches after my 4th hip operation which was only days before my THR's 10 year anniversary... I feel like I should buy it a gift :) sounds like a good excuse to have a glass of wine... or 10 :)

Below is a picture of my THR 10 years ago... haha normally girls my age are posting photos of their babies, not their THR first photos....gotta laugh I guess

Wear your scar like your first tattoo! You may not like it as much anymore, but it is a part of you!

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