This is the story of a fellow sufferer Col Pickering, 52 year old Australian who has Bilateral Kienbock’s Disease.
My childhood, was, I guess as normal as any other child, played sports Aussie Rules, soccer, water-ski etc and did the normal kid stuff. But I didn’t break any wrists and I never damaged my wrists in any way (well as far back as I can remember). I also started playing the drums when I was 13 and continued playing in bands until I was 18.
My employment started doing paper rounds at 13 years old, then supermarkets. At 17 I become a concreter (where I did work on a jack hammer now and again) and when I was 18 I joined the Army, (first 3 years as an infantry soldier, most of the time I carried a M60 machine gun). Then 7 years in catering where I ended up managing some boozers (drinking holes).
In 1988 I worked as a security guard at expo 88 in Brisbane. I then owned a lawn mowing landscaping business. After two years of that I commenced working for a transport company as a delivery driver lugging bundles of magazines.
I left that in 1995 to travel to Europe and when I returned to Australia I worked in a pub out in South Western Queensland.
When I returned to Brisbane I worked in a servo, then a car yard and finally as a delivery driver for a plumbing company 1998-1999 until that fateful day in September 1999 when I suddenly had pain in the wrists. Over a period of 4 days the pain became unbearable and I couldn’t pick anything up. So off to the doctor. He said no work, rest for two weeks, most likely strained my wrists.
The pain continued and commenced to ache more and more. After 2 weeks went back to doc and said that there was no improvement. Take off another two weeks and see a physio. The physio, well, she couldn’t work it out so started giving me all these sort of electro stimulating things on my wrist and heat treatments etc… two weeks on and still heaps of pain in the wrists as lots of $$$$ spent, as all my doctor bills were being covered by work compo (compensation) but not the physio. From one specialist to the next and the next and the next and the next etc. All the blood taken for tests, heaps of x-rays, then finally (3 months later) a neurologist says to me that I needed a nuclear scan done. So off I go, get jabbed with this beautiful needle full of dye. Told to lie still for as long as it takes (which seemed as long as ever).He says ‘it looks like you’ve got Kienbock’s, I’ll send you off for an MRI just to make sure’. What the hell is Kienbocks? – I am thinking to myself. After MRI I go back and see him. ‘Guess what? You have got this rare disease called Kienbock’s Disease in both wrists. Bilateral is even rarer, especially getting it in both wrists at the same time and you also have neutral variance. You need to research this as much as possible, but as I work for compo, I cannot treat you again’. Unless you got the $$$$$ (basically). Then back to see all the other specialists again so that they could all go “arghhhhh!!!!!!!!!! Yes!!!!!!!!!, you have Kienbocks Disease” (workers compo wankers), call themselves specialist’s, but couldn’t diagnose me for three months. And once I was diagnosed with a disease and not an injury, and all concurred that employment was not the cause, I was flobbed of by compo as quick as a phone call. Coz that’s how they did it. Ring…. ring….. ‘Sorry mate, you got a disease not an injury. No more money for you, and all docs expenses from here on in are your own. We will send paperwork through mail’. If there are any compo workers reading this for info, you need to hire people who know what they are doing and be more compassionate about your job.
What Do I Do Now?!
So, now here I am unable to work, so it’s off to Centrelink and I applied for the Disability Pension not unemployment benefits, as if I am unable to work and no compo assistance and a long term condition, then I felt that I should be able to get Disability Support. They put me on sickness benefits while the paperwork was being shuffled. I also applied for rehab through CRS who were excellent, I was put on a computer course, and a get back to work program. Then it came to doing practical work (1 day this week,2 next week and so on until able to work full time again), but I was unable to get medical clearance. They asked me if I was on pension and I told them that I was still on the roundabout and was waiting for it to stop. I told them about the roundabout. They said we will give them a ring, I thought ‘yeah, ok…’
Meanwhile, back to the Pension Roundabout. Was sent to see their GP. I walked into his office and saw this bloke reading through my file, he says to me, ‘Do you have any questions for me?’ I replied ‘Have you ever seen Kienbock’s before?’ and he replied, ‘No I haven’t’. So I said ‘Well I guess I got no questions for you, then have I?’. I showed him by Compo Doc reports including my new surgeon. One of the specialists reports stated: ‘that it would be unfair for any employer to employ me, and also unfair for me to return back to work in my condition’. He said ‘Ok we’ll get back to you’. And that they did – got a letter saying ‘sorry no pension’.
That was it! I blew my top and rang the pension people and spoke to the guy in charge, I asked him what was the go, and how can a GP say that I was ok to work when all these specialists said I couldn’t. I asked him if he had heard of KD and guess what he said. ‘NO I HAVEN’T’. So I told him to set up a medical tribunal as I was not happy with the way the system works. A GP overrides a specialist. What a joke! I told him so in many unpleasant words (you don’t upset Col on a bad day). So he says ‘reapply and we will attempt again’.
The day after I was at CRS, that guy didn’t muck around. He rang the pension mob said ‘whats going on’? And told them that my rehab had come to a halt due to medical reasons and that I should be on the disability pension. It was approved and backdated from when I first applied.
But What About the Pain?
Well the the pain hadn’t changed, August 2000 I had a Revascularization on my left wrist, as we thought, fix one then the next. The pain stayed and sometimes felt like someone stabbed me with a knife through the lunate. Unfortunately that operation was unsuccessfull, and only six months ago was taken of all Physio, so back to the drawing board.
Next option (Still waiting for this as I am on the Pension and have to go through the public system and their waiting list): Denervation of both wrists which will eliminate the pain, but at the same time this will not damage other nerves as they know which nerves to cut. This will be followed by a lateral opening radial wedge osteotomy on both wrists.
I suffer from depression because of this condition, and have been on medication for that for over two years now. My daily pain level rates from a 7/10 – 15/10 on those bad days. I have not had a decent nights sleep since I’ve had KD. I wear ‘Thermoskins’ braces almost 24/7 . Try not to sleep with them on, but when I wake up its ‘quick get me arms on'(we call my thermo’s my arms around here).
Kienbock’s Disease has been, and will continue to be a learning tower for me, as I am still in Stage II limbo land, Stage One to Stage Two took three months, and here I am three years KD on and still hasn’t progressed to Stage III. Which means there is still that chance of recovery to the lunate.
Two years on and I go in and see a GP (once again). And this one said yes he had seen KD before. Take in all my UPDATED specialists reports stating yes over two years before any likely recovery and all the other stuff they write. He gives my wrists a check over and says ‘Ok we will be in contact with you’.
Once again, they get in touch only to tell me I am well enough to go back to work.
This guy couldn’t see the logic in that, when i am pending operations, recovery time. The pain I’m in now obviously meant jack shit to this GP.
I received a letter :’See you in another two years for next review”.
I am thinking positive results for my next ops whenever they may be. I miss a lot of the quality things in life that I used to do, and would love to be able to get behind a boat and go skiing, play the drums again, even to be able to go fishing again. Maybe one day this Kienbock Disease may be behind me and I may be able to resume a normal life again.
25 September 2002. I will update this story as time goes on.
Many surgeries (aprox 12) later including denervations, Ulna shortenings, and still no joy, thanks for reading my story.