Tuesday 13 March 2012

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

8 comments:

  1. A little tired when i wrote this, hope it doesnt ramble too much x

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  2. So wonderful. You are a great woman!

    BTW, and I feel dumb for asking... THR patients have bone density issues?

    All this learning I've done on version and retroversion, and I never came across what else to which I have to look forward...

    I had bilateral THRs 9/16/12 after 11 years of horrific pain. Born without hip sockets evidently, so when I stood up to walk as a one year old, the sockets formed on the bottom of my pelvis, which meant the femurs had to twist backward (the greater trochanters, pointing behind me, instead of out to the side like most people's do) in order for me to walk. My feet pointed out like a duck's but I could and did correct that muscularly, but now I'm learning to walk in someone else's body, it seems, since they changed my 'version,' which essentially corrected my posture & will eventually, once I learn to walk, fix my gait.

    --frannie (www.francesscott.com) on FB as Frances Scott

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  3. Hi Frances!!
    Thank you for your encouraging words, like im sure you know, it helps build the confidence so much!!

    Well, that is what they said and why they were trialing the drug for bone density, but i haven't really researched it since.

    I watched your TV news story about your situation..... could not begin to imagine what it is like to have a double THR. I enjoyed watching the support you have from your family and obviously work collegues.... I can relate and it makes the world of difference to have that behind you....

    Its also a great that you can get your story out to the public like you are doing, there are unfortunately sooo many young people dealing with Joint Replacement. I am looking at writing a book (based on this blog) when i get the chance, in the hope of helping others :)

    My cause of the THR is a rare disease which needs more awareness. PVNS only occurs in 1.8 people per MILLION in the world, so over here in Australia (if you go by the stats) only 42 of us would have this bone eating monster.....so if there was more awareness, the stats could be higher and better treated.

    I hope you are going well with your recovery, see you in the facebook groups :)

    Bel x

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  4. Hip replacement surgery is a very typical surgery and patient must choose a well known hospital because carelessness could make you disable for the whole life.

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  5. It is good to know that there are people who are definitely happy with these hip replacement surgery, it is a must that the patients must have enough knowledge with the possible chance of having this, since this is a very rare operation.

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  6. It's cool to hear your story. Seems like PVNS got you earlier than it did me. Mine started when I was about 24. I had two unnecessary hernia surgeries because this was misdiagnosed. I kept telling the doc that my hip still hurt, and he didn't fix it so I went to another doc. He actually had an MRI done and referred me to an orthopedic oncologist where it was diagnosed correctly. He decided to do a "clean out" procedure where he tried to remove as much of the synovium as possible and he addressed all the bone cysts. It came back in 4 years more aggresively. I went to another ortho oncologist after this. He said he wanted to do a "radical clean out" where he dislocated my leg. He promised me it wouldn't come back. I can relate to your story of 6 days in the hospital hallucinating. It was weird to say the least. Now here I sit 4 years later and it's come back even more aggresively. I really don't want a hip replacement because I'm in the industry where I sell the joints to orthopedic surgeons. I'm in on THR surgeries all the time. I've seen nightmare revisions and I just don't want to be one of those people. My question is, has the PVNS come back after hip replacement? Does it hurt anymore? I'm stil very active despite the hip pain, so can you still run, bike, swim etc.. with a hip replacement compounded with PVNS?

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  8. I am sorry to hear everyone’s stories, as they sound so familiar. They think my PVNS started when I was around 11 years old, that is when I first noticed my hip locking when I would walk. One day when I was 18, I just could not use that leg. After many tests, x-rays, mri's and biopsies they determined my issue was PVNS. I had my first synovectomyJanuary of 1994. Well long story short, my PVNS recurred... 2 more times leading to two more surgeries to remove the tumors. Finally in 2001 at the age of 26 it was discovered that my PVNS had returned again. At that time I told my orthopedic surgeon that I wanted the hip replacement. He agreed and surgery was scheduled. Once he was inside, he discovered that I had no cartilage left and a THR was required whether I wanted one or not. Fast forward to now and I had been having problems with lifting that leg, I cannot lift it more than a few inches off the ground unless I am assisting it with my hand. At my yearly visit with my surgeon he thought the issue was with my iliopsoas and ordered an MRI. The MRI showed a tear in the tendon that connects my gluteous to the bone and fluid surrounding my hip joint. They are concerned the fluid is the PVNS recurring AGAIN. I am so frustrated, especially as I was under the assumption that the THR would eliminate the PVNS for good. Best of luck to you all…. Just know you are not alone out there!!

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