Catherine Iler, 30, Campbelltown, NSW
As I stood up from my desk, I lost my balance and knocked into the wall.
‘Are you okay?’ a colleague asked.
When I replied, my words came out slurred.
That’s odd, I thought. It sounded as though I was drunk!
‘I think you’ve had a stroke,’ my GP said, sending me to hospital.
My husband Daniel, 32, met me there and I was given a shocking diagnosis.
‘You have a Chiari malformation,’ the doctor said, explaining the lowest part of my brain, the cerebellum, had dropped into the top of the spinal canal. ‘You
must have had it from birth,’ she added.
Five days later I had decompression surgery to remove bones from my neck and spine to create space around my brain.
The operation was successful and I returned to work eight weeks later.
But after a year, my symptoms returned.
I’d regularly stumble, get terrible headaches and my hearing became extremely sensitive.
I had surgery to again lift my cerebellum and insert a titanium plate to hold it in place.
A few weeks later, the back of my head swelled up like a balloon with fluid from my brain and spine.
Although doctors drained it, my symptoms worsened.
I wake up every morning feeling like I’ve been kicked in the back of the head and my balance is so poor I can’t stand or walk unaided.
Now my doctors say there’s nothing they can do.
I found an expert in the US and he believes I’m allergic to my titanium implant and said he can do surgery to remove it along with part of my cerebellum.
As a mum of four, I’m willing to do whatever it takes, so I’ve launched a fundraising campaign.
All I want is a cure.
Chiari malformation
– This is a structural defect in the cerebellum, the part of the brain that controls balance.
– The cerebellum usually sits in an indented space at the rear of the skull and a malformation occurs when part of it drops below it into the opening to the spinal canal.
– Symptoms include neck pain, balance problems, dizziness, hearing loss, or headache made worse by coughing or straining.
This story was originally published in that’s life! Issue 46, 19 November, 2015.
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