Personal message

During 2014 I had just turned  16. I stared experiencing headaches  it soon became a permanent. I was diagnosed with meningitis. After this I was hospitalized and had tests done. An EEG scan showed abnormal brain activity with possible epilepsy.  I have been treated chronically since. An MRI of the brain came back normal. Only later when neck pains started I was sent for a neck MRI. This is where they picked up the anomaly in my spinal cord.  The final diagnosis was a Syringomyelia (Syrinx).

I needed a stent to drain the fluid.

It is highly risky with only a 50% chance at success.  To add to the rarity of my condition: syrinxes are said to be caused by “trauma, tumours or craniosurvical junction abnormality”. None of these causes apply to me.

Medication doesn’t cure it, it only alleviates the symptoms . The problem is that instead of growing longitudinally, it is growing laterally making it more dangerous.

My symptoms progressed: chronic headaches, permanent back & neck pains, pins & needles in my extremities permanently.  Dizziness & memory loss manifested due to side affects of the medication.

In 2017, my father lost his job and our medical cover. It took me 1 year to get my own. Due to my pre-existing condition I have a 12 month waiting period. The operation has to happen ASAP as it could be triggered at any point. I currently still have 8 months to go. My current medical won't cover my procedure before the waiting period has passed due to anti-selection.

I had to quit my previous job due to me not being allowed ANY physical activities. I was a gymnastics coach.

To read the full story https://pastebin.com/pBXCv0gT

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