Wednesday, 12 May 2010

My Story in the News

Hi all, some of you amy have read that i approached my Local Newspaper some time back ( The Birmingham Mail ) regarding my story. I had not heard back from them for months and thought that they had forgot about it, as they said they would contact me when i went to press. I attended hospital for a infusion study yesterday and my NS issued me with a copy of it whilst in theatre. I did not know it had been published.

It reads


A Birmingham dad is urging the NHS to raise awareness of a rare brain disorder which was only diagnosed after he consulted US specialists.
Darren Norton from Great Barr fears more people in Britain could be suffering from Chiari Malformation (CM).
The 40 year old former construction Site Manager started having severe headcahes, vertigo,blurred vision, and numb limbs three years ago.
But his symptoms where passed off as Depression or Labyrinthitis, inflamation of the ear, by Doctors.
Darren who says the condition is so debilitating it is stopping him from being a proper Father to his three year old son, was adamant it was neither.
Next his memory began to deteriorate and speech started to become slurred, so he returned to Doctors and was advised to have an MRI scan at Sandwell Hospital in May 2007. He said medics feared he could have Cancer.
But the results never materialised and Darren went for a second scan, this time at Walsall Manor Hospital late in 2007.
The results arrived early in 2008 along with findings of the first test.Both scans tested negative for cancerous cells, but did suggest his symptoms could be linked to CM.
Darren who lives with his wife Victoria and their son, then undertook months of research online into the condition which he had never heard of.
He uploaded images of his scan results onto the American Syringomyelia Alliance Project Website and also spoke to bloggers on Conquer Chiari, an American internet forum dedicated to CM.
"They all suggested i'd got CM and that i needed to see a Neurosurgeon" he said. " it was great relief to hear that i'd got a problem and wasn't just making it up or being a Hypochondriac".
Darrens fears were confirmed by a Neurosurgeon at Selly Oak Hospital and seconded by an Expert at the Walton Centre in Liverpool, the only practice in the country dedicated to the dedection and treatment of the disorder.
Darren underwent Brain Surgery at Selly Oak Hospital in April last year to address the condition, which affects the Cerebellum in the Brain and often leads to Syringomyelia- the formation of cavities in the spinal chord.
But he still suffers from many of the initial symptoms and relies on a daily course of medication and painkillers.
He will meet a consultant at Selly Oak Hospital in the coming weeks to find out whether he must have more surgery.
Darren, who has been out of work since forst suffering from the disorder, is now putting all his efforts into setting up a forum to help sufferers in the UK.
He is also lobbying the NHS to produce a pamphlet on CM to be distibuted to GP Surgeries.

1 comment:

lace1070 said...

Knowledge is power when it comes to Chiari ~ Kudos for getting your story out there ~ keep blogging and spreading the word about Chiari ~ I pray tht you have more good feeling days ~ hugs ~ Lace