Why didn't I go public?

Updated: Sep 21, 2019

You live in Australia they HAVE to treat you if you are sick. (lots of emphasis coming)

Not quite as easy as that. Yes, I am Australian and yes I have access to tax-supported public health with no out of pocket. I WISH I could have gone to them for help and I did, when I was 12. The day I woke up unable to feel my right side and having pins and needles, visual disturbances (nystagmus) and lost my balance, my doctor sent me to the public hospital emergency. They did a CT and when they couldn't find anything on that ONE test and ruled out the stroke my GP was considering I was sent to a neurologist. They diagnosed me with post-viral cerebellar ataxia and to come back in 3 months when I was better. When I wasn't, come back in 3 months when I was better. When I wasn't we asked for a second opinion. They blamed stress from parental divorce. I was discharged despite having no feeling on my right side, unable to tolerate light or read properly, severe fatigue and unable to attend school, headaches, pain and unable to dance again because I couldn't stand on one leg or walk a straight line anymore.

DESPITE this I still went back half-way through my medical journey even when I had most of my disorders diagnosed. They couldn't help, even though I was seeing a general physician who is a specialist IN complex disorders. It became a problem because each time I came in I had a new doctor and had to pretty much answer the same questions because they didn't of my disorders. So yes, they technically can't turn you away when you are sick. It doesn't mean they know how to help. My first surgery was only $1000 out of pocket (I have top-level private health cover). When things became complicated even with a second opinion from a specialists doctor we ALL (including doctors) decided due to complixity it would be best to stay with the SAME doctor. That ONLY cost $5000 out of pocket.

Then I had MORE problems and MORE co-morbid diagnosis and even fewer doctors knew my diagnosis and even fewer how they interacted. So when the patch they put in on my 2nd brain surgery got STUCK to my brain and needed to be peeled off and my ENTIRE cerebellum was slipping down and needing to be propped up with MESH only ONE doctor knew about this at the time. So we saw the ONE doctor who understood and that cost $10,000 out of pocket. Please also remember these costs were for the SURGEON ONLY. They didn't cover the appointments (which I had to travel interstate for), anaesthetist fees, surgical assistant fees, scans (both in hospital and out-patient), time off work (when I could still work), follow-up travel, medication etc.

Sure along with the 15 surgeries, many didn't have a gap or anything much but the very important ones had astronomical ones and those were during times I was too sick to work and was being covered by the disability pension. Which barely covers basic cost of living, not being sick. My private health also covered a lot of fees, but there were still multiple gaps I had to cover from my own pocket that would make up a half the cost of a very nice house.

Last year alone I had to see 6 neurosurgeons trying to find someone who KNEW about CCI. I know its picky to look for a doctor who actually knows of the disorder before cutting in you, but after multiple complex issues, I like my doctors to at least be able to pronounce my disorder correctly.

So after 10yrs of seeking help both publically and privately for treatment of CCI/AAI and cranial settling I was getting to a stage where my doctors were worried I wouldn't wake up one day soon (I already don't breath on my own when I sleep). So I couldn't keep waiting for the public system to figure it out. They already failed to recognise part of my brain was no longer in my skull...and let me go for my syrinx to grow to almost the entire spinal cord.

So when I got lucky and found a doctor in Australia who would I jumped regardless of costs. As I would struggle to find the $100,000-$500,000 to get treatment from the international specialists (one of the THREE in the world). So I took the risk being the first patient he did the surgery with and the 2nd the assistant did (though mine was different yet again from what he had done).

My News Story about my surgery

So yes, that's why I am in medical debt and if you think it's by choice after all of this I don't know how else to express this complex and painful situation. Whenever I could I worked so I could pay my tax and pay back my bills. Now I can't get out of bed I still try and get extra money where I can between horrific pain on my laptop.

Help financially -

More Info - #kirstinscause

#cci #eds #chiari

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