This occurred as I have a connective tissue disorder called Hypermobile Ehlers Danlos. The connective tissue is like the glue that holds together my body and its defective. This means I can easily sublux or dislocate joints from simple activities like walking, sleeping, sneezing, carrying, etc.
I also have a condition called Chiari Malformation. This is where part of the brain called the cerebellum herniates out of the skull. To treat that I have had 3 brain surgeries that removed a lot of bone and put a patch in the lining of my brain.
Because of my weak connective tissue and all the bone removed from surgery, my neck has become unstable and the skull is sliding down. This is causing pressure on my brainstem that controls breathing, heart rate and all the things we take for granted. It is also very painful.
I have been seeking treatment for the better part of the decade, but until recently there was nothing to be done within Australia and the cost to travel internationally would have bankrupted me.
I have found a team local to me who is trying to help. Right now they have put me in invasive cervical traction device called a halo. It immobilises my neck in one position for the next month. If this brings enough relief we would move forward with fusing my skull permanently to my neck. This has its risks, I will also have a reduction in the movement of my neck and likely need further neck surgery within a decade.
This is all very costly. All up since I was diagnosed 15yrs ago I have undergone almost a dozen surgeries, 4 of which are brain surgeries. I have a shunt in my brain for a condition I developed called Intracranial Hypertension. I also have an implanted pump that delivers pain medication straight to my spine. As I have chronic pain from all these disorders and from a spinal condition called syringomyelia. Where a back up of fluid (syrinx) crushed my cord.
Before my spine started to deteriorate I was chasing a very hard-won dream by doing my PhD! I had spent ages working on my degrees from my bed or in hospital. I moved interstate away from all my friends and family and quit my full-time job. Now I spend 90% of my time in bed on the disability pension.
I hope that in correcting this I can go back to when I could study and complete my dream to get my doctorate!
We don't know the exact costs yet of the surgery, mainly because this precise surgery hasn't been done before in Australia. Only one before with similar conditions. So any monies raised will go towards the cost of that and any medical bills associated.
Thanks for your time learning about this and if you can spare some change it would be immensely helpful. Even if you can just share would help!
- Brent Augustine
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