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Hi, my name is Chris. I am 40 years old, married to Sharon and have 2 young children. I have Chiari and Syringomyelia and went through Decompression surgery in April 2009. The aim of this blog is to raise awareness of this condition and offer support by way of helpful information to other sufferers. This blog represents my own experiences, those of my friends and people that I have met with these conditions and the great advice that I have been offered and my journey towards either acceptance or recovery.

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Chiari Malformation and Syringomyelia not listed?

I have been reliably informed that CM and SM are not currently listed on the NHS direct encyclopaedia (this might not be the most accurate title I have now been informed) of conditions which they use to answer our questions about presenting certain symptoms or groups of symptoms. Nor is Chiari listed as a possible cause of hydrocephalus!

No wonder we are often being misdiagnosed or treated for something completely different!

However, after meeting with people from The Walton Centre, I have been informed that they are taking this up and addressing the issue formally. More news to come on this!

Related posts:

Syringomyelia - What is it?
Glossary
Government Petition to help raise awareness

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