The cure of PVNS with Cryosurgery

I haven't written on this blog in a while, 3 years in fact. Reliving the pain of what I have gone through is easier to forget when you are not writing about it all the time. However I have realised that my pain of reliving it is nothing compared to those who are still dealing with PVNS and that maybe my story might help them.

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

THR Complications after 10 years

Getting a hip replacement young ultimately means you will have to have revision surgery later on in life! Mine happened exactly 10 years after I received a Total Hip Replacement on my left leg at the age of 19.

　

In the beginning of 2011, I was working onsite at an exhibition (I am an Event Manager), and as I was walking around I felt like I had pulled my groin. In all honesty, I probably did - I don’t exercise at all so something as simple as walking would cause me injury haha. Later on in the day I was on the phone to my mother and recall saying that I think it’s a good time to see my Orthopaedic Surgeon again. It had been 10 years after all, a check up on my hip and an x-ray would be a good idea.　

　

I made the appointment to see my surgeon in a few weeks time. By the time the appointment came around, I was coincidentally starting to experience pain in my hip – no longer the feeling of a pulled groin muscle. Good thing I was seeing him!

I had my x-ray before the appointment and without the radiographers report my surgeon took a look and said my hip looked fine! It was really stable, there were no signs of the hip components loosening and the bone structure looked great!

　

I was confused, I had pain, yet he said my x-ray looked fine! What the hell is causing all of this discomfort.

　

Seeing as though I do absolutely NO exercise, i thought it must be muscular or the lack of. I must need to change that lazy aspect of my life and start building my muscles up to support my hip and put a stop to this discomfort. But no, he didn’t like the idea of me possibly pushing myself physically – even though its what I should have been doing all along – carefully strengthening my core, legs and glutes. When you exercise with a THR you must be soooo careful as to what you physically do. No running, no jumping, no excessive cycling – no anything that could do damage or ultimately wear the joint out. After all it is a machine and doesn’t rejuvenate itself – makes sense, I get it.

　

However! Surely you’re not meant to go through life in this much pain, without there being something wrong. Your body shares its pain with you purely to tell you there is something quite not right. So thinking of this – I had to listen to her and stand up for her.

　

After going back and forth with my surgeon, trying to get a plan of attack that we could both agree on – it got to the point where my stubborn streak came out in full force....I stood up, went to leave and said "Well if the x-ray says that my THR and bone structure is all ok and there is nothing else you can do for me, I am going to go home, get on with my life and going to try and rehabilitate my hip."

　

And as if it were just to shut me up, a referral for a nuclear bone scan was written and pushed across the desk

　

A week later I had the bone scan and there it was – a 2cm bone cyst in the roof of my acetabulum (the top of the cup, which is within your pelvis). AH HA! Finally, now I can see what is causing the pain!! I know I’m never wrong ;)

　

Surgery was scheduled for the 22^nd of July 2011. The "plan" was for my surgeon to take a look at what was going on inside my hip, clean the cyst out, patch me back up with a bone graft and send me on my merry way...............

　

...............boy was I wrong.

　

The next 12 months consisted of 5 hip operations, including the complete removal of my original THR and replacement with the one I have currently.

　

Pays to be stubborn sometimes, especially when it comes to your own heath. "They" say that patients do in fact doctor themselves better than their surgeons more often than not. At the end of the day – the patient knows their body the best.

　

Wear your scar with ears. If you hear it – give it a voice, because no one else can.

Hospital Preparation!

Well it's the night before I head into hospital to have my scar opened up once again.... She's a battler the ol scar.... No matter how many times she gets sliced, she always bounces back and heals well. So I'm packing now, and trying to keep the nerves settled. Going to head to my boyfriends place tonight and just chill out and try and not think about it too much. Preparing for hospital is kinda like packing for a holiday, but instead of packing the bikini, you make sure you have your comfiest pyjamas and leave your makeup at home! My checklist is as follows: - iPad - phone - pyjamas - socks - ugg boots - books - magazines - stacks of moisturiser - lip balm - jewellery - toiletries - crutches - hairdryer - tissues - tinted moisturiser, replaces your makeup - Laptop - snacks - your own pillow - scans and X-rays The operation i am having is a Total Hip Replacement Revision. My entire old hip replacement (which I've had for 11 years) is coming out and I'm getting a shinny new upgrade (titanium and ceramic Synergy Hip from Smith and Nephew). It feels very bizarre to be having a complete 2nd hip replacement at the age of 30! I guess it's a good thing to get this all done and out of the way whilst I'm young... At least I'll heal quicker.... And again, there a so many people out there worse off! At least I have my legs and all I'm undergoing is hip surgery... It's not heart surgery, it's not cancer, it's not life threatening.... It's just a pain in the backside - literally!! So I'll be sure to update more as I'm in hospital over the coming weeks, I'll share my progress and hope it helps others who are going through a revision of their already existing hip replacement! It's rare enough at a young age to get a hip replaced, let alone 2! So if it helps others... I'll be stoked! Wish me luck and I'll chat to you soon! Wear your scar and look after her, she's been through a lot and will need just as much TLC as your body does whilst you recover... vitamin E.... It's her best friend Bel x

Recurrence of PVNS = my Total Hip Replacement

10 months after the first surgery I had in March 2000 to remove the PVNS, the same pinching pain returned.

Scans showed the same mass in and around the top of my femur. The next episode of the attack of the PVNS had started and plans were starting to be thrown around the room as to what should be done next!

It had completely re-eaten the artificial bone graft that was put in the first time, and now gone back into my pelvis with only 2mm of my pelvic bone left before it entered my reproductive area.

The last scan I had done of my left hip joint was 7 weeks prior to the operation date (proposed for Dec 2001). It was discussed that this benign tumour everyone was learning to be PVNS was that aggressive that it may have already broken through the 2mm of my pelvic floor and entered the soft tissue of where a woman holds hope of having a family one day. Even though i was only 19, I knew it was something I always hoped would happen.... that one day I would be a mother.

My surgeon organised for my case to be presented in front of a group of senior surgeons in the Sutherland Shire area of where I live. After my surgeon took my case with him around the world trying to figure out how to cure this bone eating monster, he was still at a loss of how he could destroy its existence within my left hip joint. So one Thursday morning, my mother, father and I attended the meeting which would ultimately provide the answer in how to cure my PVNS!

After seeing my scans splashed across the monstrous screen in front of 30 to 40 medical professionals and hearing alot of medical jargon hit back and forth like a tennis match, I was then asked to stand up on stage to show them.... the person behind the tumour! After walking back and forth a few times,  the 3 of us were asked to leave the room. The last thing we wanted to do!!! It was like we were criminals and the jury had to discuss the sentence!! Was I going be guilty or innocent, banished or cured???

My luck was changing, all of those medical professionals were sitting in that room, listening to MY case and didn't realise they were about to change my life! One surgeon came up with the technique of using Cryotherapy within my joint.

The surgery was 7 weeks away and the planning of this 4 hour procedure was underway. It goes a little like this....

I checked into hospital the night before the big day!! Do you know how weird it is to sleep in a hospital bed when you aren't really "injured". Its weird and the noises are creepy! I didn't sleep a wink, I stared at the ceiling all night. Waiting, waiting for 6am to come around where the nurse come in and ask me to have my final shower before I put on my sexy gown!

I'm wheeled down to theatre and waiting in pre-op.... I'm the first one in, so its quiet and I'm the only bed waiting. Passing the minutes which seemed like hours by watching each and every shuffled step of the covered feet of nurses and doctors. Their funky head wear and colourful clothes... I guess it did make me feel a little better! I'm given a red wristband to denote that I am allergic to Morphine. I was given Morphine for pain relief at the last operation and my skin practically crawled off me, so noted not to have again.... Pethidine it is for me this time.

I remember speaking to the anaesthetist, and then counting down from 10 once I was lying on the cold skinny table in the theatre room.... next thing I know I am in pain, thirsty and in recovery!

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 my PVNS destroyed.... and they succeeded!

They cut of 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 be destroyed by PVNS. After removing the spare bone from the back of my left hip (everyone has spare bone there), they donored 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 dis solvable stitches locked out the PVNS to the outside world and my hip was now protected from this bone eating monster.

I was in hospital for a week, high on pethadine, hallucinating thinking Dawson from Dawson's Creek was being chased by a giant cockroach :) I only wish that iPhones were around 10 years ago, some funny shit would have been filmed. 2 days later my drain was removed and my drip came out, Digesics became my pain killer of choice.

Whilst in hospital, I was visited by the in house doctor to see if I was willing to participate in an anonymous trial. The trial was regarding a selection of patients receiving an injection. Some of the injections contained a drug which would assist bone density and some would receive saline. It was proven to have worked successfully on protecting a cancer patients bone density. Now they wanted to see if it would assist Hip Replacement patients bone density. The side effects were severe nausea but nothing dangerous. Mum and Dad then asked, Belinda will participate, but only if you make sure you give her the trial drug. They did and the nausea set in.

By this stage I was 5 days in and OVER IT! I was tired, fatigued, sore and bored.... mentally I was suffering, I wanted to go home.

On the 6th day, I demanded I go home, I'd had enough.... silly of me, because I had a turn of high fevers and restless sleep the first night I got home. In the end it was just the reaction to the trial drug, but really I should have stayed in hospital for one extra night.

I cant really remember, but my recovery was slow but not very painful. I was on crutches for about 6 weeks, bearing weight in hospital and hobbling around without my crutches 2 weeks post op (naughty).

The old pain was a thing of the past..... no wonder people rave on about how fantastic THR's are!!

Come February (3 months post op), I started my studies at TAFE (college) and was on the hunt for a job in the events industry... By March, I landed my first full time job in the events industry I am now successful in and my life at the age of 20 resumed.....

Having a Hip Replacement is not as scary as you think. It is life changing and in my case was absolutely necessary... I wonder how i am going to feel in another 20 years from now, I just had 3 bouts of revision surgery and everything seems to be ok at the moment.... gotta live for the now, not the later.... even though the doctors want to concentrate on your life in 40 years and not the issue now.

To be continued.... another post regarding my revision surgery over the last 9 months and how I have lived with a hip replacement for the last 10 years will be posted soon.

Wear your scar with a stride or a limp, the happiness knowing you can limp whilst you walk is what  others will never understand.

P.S. the trial was successful, nuclear scans a few months later proved my bone density wasn't as low as it was expected for a THR.... more great news

A picture says a thousand words

Just a quick post showing what PVNS can do to bone and realising why I was in soooo much pain because of it.

The photos are quite graphic, so just a warning for those who have a weak stomach.

I wouldn't wish this upon my worst enemy, I am soooo lucky that my PVNS has NOT recurred.. these photos were taken exactly 10 years ago and surgery this year confirmed i was in the all clear.

My PVNS was eliminated by the use of cryotherapy (freezing) to a temperature of -150 degrees Celsius. This was done to ensure the PVNS hadn't gone through to the inside of my pelvic wall. Cryotherapy also destroyed my cartilage which then meant I required a total hip replacement.... give me a hip replacement any day, if it means the below never comes back.

My femoral head after it was removed from my leg in theatre before my Total Hip Replacement in 2001.  The PVNS had eaten into each side.. The two cuts are where the surgeon made a cross section to see inside - see below.

This is a cross section of the femoral head.. The PVNS had taken a bite out of each side and pretty much destroyed my joint overall... It had also gone in and through my socket and left 2mm of my pelvic bone before it broke through to my "lady area". Imagine what it would have done to my soft tissue in there, if it does this to bone!!

Wear your scar with pride, the reason it is there may be more important to your well being than anyone could ever know.

 

Infection!!

It does happen.... and its happened to me!! My poor scar is looking rather nasty, but its whats underneath that is worrying me!!

The day before I noticed the infection       The day the scar became hot and inflamed

I am currently 6 and a half weeks post op of having a bone cyst removed from my pelvis. This is the 4th operation I have had on my hip in the last 12 years. Its the first time I am going through the experience of having an infection :(

BE AWARE OF INFECTION AND WHAT TO LOOK OUT FOR AFTER AN OP!!
1. Hot Incision (could fry an egg)
2. Swelling/Hardening of the Incision (ewww it looks yuk)
3. Redness (with flames)
4. Drainage From the Incision (I didn't have this)
5. Pain (tell me about it)

I never thought it would happen to me! Its actually quite common, but come on really, I look after myself, it wont happen! Yeah well it has.

18 days post op, my scar became hot to touch, red and inflamed!! The key signs of infection!! (see pics above). This was also 2 days before xmas! My GP, surgeon and anyone with a brain in the medical profession was now on holidays! My gland in my groin was swollen and sore to touch, so I gave myself a phd in medicine and made it my task to find someone who could write a script!

I found the nearest medical centre and tell the doctor what is happening and what I need. He doesn't even look at my scar, writes me a script and at the chemist I fill a prescription for an antibiotic! I only get one of the two I was discharged with from hospital (I couldn't remember the other one, so for now I thought it was better to have something rather than nothing). Xmas was here and I'd get to a better doctor in a few days!

Xmas day was spent on the couch with ice on my leg, Boxing day was spent at the hospital in the after hours clinic... more antibiotics were ordered. This seemed to settle the redness and also calm down the raised scar tissue for the next week or so. It was still hot to touch and my hip was still quite painful, but it seemed to be sorting itself out. New years happened and I had a fantastic night sending off 2011!! She had been a tough year!!

2012 started with me sleeping away a lot of day 1 and 2! It was like I was abnormally fatigued so I decided to head off to my own GP a few days later, I just didn't feel right and the scar still didn't look 100%. She asked me to get my bloods taken, gave me my 3rd course of antibiotics and given the look of my scar, advised me to book an appointment with my surgeon.

He was still overseas on xmas holidays so I was to see his assistant. Actually the assistant who was involved with my operation, so that was promising! Boy was I wrong.

I was told it wasn't infected as my bloods came back normal, he said it was normal for an incision to look red, especially after bone graft surgery and to stop taking my antibiotics. You know I actually believed he was right. I think I was at my wits end with everything going wrong that I thought "you know what, he's the doctor, i trust him, my health is in good hands.... sweet!"

Back at work a few days later... I was on the mend!

4th day back at work, and my scar was raised again. That's it! I called my surgeons office, he was heading down to theatre in 40 mins, so i jumped in the car and got to him before he left. The look on his face was enough said... holly shit, I was now worried.

Bloods were taken again and an ultrasound ordered. $240 later but hey, infections can be nasty, whats $240 to look after your health. It was confirmed, I had a 2.5cm x 1.5cm mass of thickened tissue (not scar tissue) and 15cm x 2.5cm x 1.5cm of fluid underneath the entire scar.... faaaarrrkkkk!!! It looked superficial, but a deep wound infection still couldn't be ruled out.

This morning, I saw the doctor first thing. Bloods are clear, the ultrasound reviewed, more tests needed to be done. Local anaesthetic, biopsy and a cat scan of the scar and it shows what we all wanted to hear. It isn't a deep wound infection! My surgeon grabbed my hands, looked me in the eyes, smiled and danced up and down celebrating my 15cm of superficial fluid :) stoked!

After I was poked and prodded to find out exactly what was going on

So now it is just back on the antibiotics and wait and see what this thing really is once the biopsy results come back. I may still need to open up the wound and curette the infection out, but worst case is..... whats a couple of days back in hospital compared to weeks of cleaning out an open, deep, infected wound... I can count myself a very lucky girl.

My scar looking it's worst :( the black dots were markers to show where the red had spread too
Wear your scar no matter what the pattern is!! Its when it decides to be sexy red and smokin hot that you cover it up!

At least I have my legs!

Not only is this something I have always told myself since I had my first operation when I was 18.... 12 years ago!! I seem to have been saying this to complete strangers more than to myself in the past 4 weeks!

I guess strutting around in crutches to parties, weddings, the beach, the supermarket, the bank, in the lift of my unit block.... pretty much every where I go, ALWAYS attracts the question "So what have you done to yourself?" I find it quite comforting to see jaws drop when i reply "I had my hip replaced", and they say "oh wow for someone so young?" Then I smile "Well actually I had it replaced 10 years ago and just had some revision surgery done a few weeks ago"... The fact they are gobsmacked and would never have picked something as crazy as a hip replacement instead of a broken leg does more good to my self esteem than they know.

I'm happy to tell my story, its my way of self therapy with dealing what I have gone through and even though I am telling others that everything is OK, I really am telling myself too.

The thing is people listen and then instantly feel sympathetic, or sorry for me, of which I completely understand! Why wouldn't they, I am most probably worse off than they are. This is where adding the final comment "At least I have my legs" seems to floor people, and i see them thinking, shit I really am lucky! This chick was 19 when she lost her natural hip, and she still has the ability to recognise that there are others out there that worse off than her and she just walked away smiling or turned the conversation onto something else, like asking me how my kids are or what I did on the weekend! This is what gets me through, that people really care to listen and understand, and that I hopefully help people appreciate that what they have in their own lives is always better than someone elses.

So right now, I am still hopping around on 2 crutches, which is 4 weeks post op from having a bone cyst curetted out of my pelvis (above my socket cup) and my bone stock grafted into the hole remaining. Its like I have cement that is setting but it still isn't dry, another 2 weeks and Ill be good to go :)

Unfortunately though, 2 weeks ago I noticed my incision became really inflamed and I am now on my 3rd course of antibiotics to treat an infection :( of which I hope is not in my bone, but as always Ill get through it, just means i have been given a great excuse to be forced back onto my backside! DVD's and day time TV here I come!

It helps to have the most amazing friends and family supporting me through all of this, so for those of you reading this, thank you! You know who you are xxx

Wear your scar like a cute new dress, it will leave a lasting impression, more positive than you think :)

Love Bel....

P.S. photos below with my artificial pair of legs for now - they make great accessories :)

At a wedding at the Siebel Pier One in The Rocks, Sydney Harbour!



After midnight at a Hawaiian themed New Years Eve party. The crutches were used more than just for my leg, helping me with my intoxication worked wonders :)