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Diagnosis part 1

Diagnosis part 1


Getting diagnosed with Chiari


It was 1999, my daughter was 1, and I had been getting numbness/pins and needles in my arms for some time and never being taken seriously.

When I also started getting blurred and double vision, I again went to the doctors.

The doctor took one look in my eyes and that was it, love at first sight, err no, sorry, I mean, he sent me straight to hospital.

From there, I was sent for an MRI, then home, and told my doctor would be sent the results.


A week later maybe, the doctor asked to see me. See, love at first sight, I knew it!

Yeah, so then he told me that I had something called Arnold Chiari malformation (now just called Chiari as apparently Arnold is no longer important) and a neurologist would be in touch.


Neurologist told me all about it, and went through my symptoms. Basically, my cerebellum had fallen down through the hole where the spinal cord goes up and my skull was squeezing it. And I needed an operation!

Excuse me, a what!

Oh and the operation will stop things getting worse but can't stop the damage already done! Woo, celebration!


So in March 2000, I was having a foramen magnum decompression. Removing a piece of skull to give my cerebellum room to dance!


I don't remember much about that time except pain. And being asked if my operation photos could go in a medical journal. Fame at last.

Oh and I also remember the doctor bringing round some student doctors to poke and prod me and talk about me like I wasn't there! And did I mind? As I was floating on the ceiling looking down at them, out of my mind on some good pain relief, I really didn't care.

Shortly after, I was weaned off the happy fairy drugs (spoilsports)

But perhaps just as well.


I was left with nystagmus (flickering eye) which I call my party trick. Or I might if I actually went to parties. Bad balance, as the cerebellum is associated with balance. Very little feeling in the right side of my body, and no reflexes either. Which affords me some childish amusement when doctors check my reflexes and panic because I don't have any.

Well, if they bothered to read my notes!


That has been my life for many years.


I'll be writing part 2 when I can be bothered.

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