I saw a post in another forum of how to talk to and approach someone with Chiari Malformation and Syringomyelia and thought that I would add my own take on it. Having been diagnosed for some while now and trying to get my life back to normal, I know friends and family have a tough time knowing what to do and what to say sometimes. They do get it wrong at times, they do judge and they do make silly comments, but in general they do not understand. I don't really expect them to fully understand - but do appreciate very much the fact that they are trying.

This post isn't me being self indulgent, although I am going through a difficult patch right now......... perhaps doing this will help me to understand others too on the other side of the coin?

What is Arnold Chiari Malformation? (Type 1)

Chiari Malformation Type I is where the cerebellar tonsils at the back of the brain descend or herniate below the base of the skull through the large opening called the Foramen Magnum into the spinal area. This results in compression of the brain stem, surrounding nerves and spinal cord, and blocks the normal flow of cerebrospinal fluid throughout the skull. This in turn causes symptoms such as severe headaches, muscle weakness and general muscle pain and weakness amongst many other debilitating symptoms in sufferers. Fortunately, patients can be asymptomatic for many years. Due to the nature and number of symptoms, this can often be mis-diagnosed, and unfortunately often for years.

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I am very new to blogging and found a great resource that I am currently using to introduce myself to it. A great resource for any new blogger

Mike's Life

My name is Chris, I am a 40 year old bloke, married with two small children and I live in Cheshire UK. I was officially diagnosed with Chiari Malformation Type 1 and Syringomyelia in early January 2009.
I had Foramen Magnum Decompression surgery in early April of 2009 in an attempt to stop the progression of my symptoms caused by my 17mm herniation and my syrinx which covered C1 to C3.

Just like many others, when I was diagnosed I had never heard of either conditions, so I searched the internet to find some answers. What I did come across was a mix of information, some of it relevant, some of it not, some of it contradictory but mostly I found it very confusing and very scary.

Well, that could actually be a really interesting question in itself. This is a place where I can post the funny things that I see on the web.

I was diagnosed officially on 20th January 2009 in Salford Royal Hospital in Manchester and I eventually had decompression surgery on 8th April 2009.

I had been through the mill of diagnosis since July 2008 after I had had an incident one morning whilst taking a shower at home. I had had a good dose of "man flu" for a week and had been laid up in bed for the majority of that time. I had started to feel better, so decided that I would take a shower in the morning to freshen myself up before walking my little girl to school.

I reached for the shower head feeling rather dizzy after a severe coughing fit a few seconds earlier, which then brought on a seering headache. One that felt like a pressure wave in my head causing immense pain.

The aim of this blog or website will always remain to create and raise awareness of Chiari Malformation and Syringomyelia throughout the UK and beyond.
It is my aim to provide a place where people just like me can come to to gain more information about Chiari and Syringomyelia and how to get treatment and to share their own experiences, fears, advice and general support.