Hi All I think that I am going to get some time to update this blog. Not only my own personal stuff, but the stories from everyone else that has contributed to it. Its no use having a stagnant thing hanging around, and i think that I might actually be able to find a few hours a week to put into it again. I need your help to do this please? Your story? Your own experience? Your own comments on posts that have previously been made? Are they correct? Do you have something to add or correct? Would you like to make a regular post on here? Please, send me your ideas via email and I will get back to you. Thank you for reading this, and please try to help. Many Thanks Chris

Timing is everything, or so they say. Well, I'd say that lousy timing is really infuriating. The forum at chiari.co.uk (after a lot of teething problems) has been hacked. It seems that the extra publicity from the Daily Mail stories has got the profile just a little too far into plain sight.

The number of page hits per day jumped by over 5000% when the story broke in the Mail - many hundreds of google searches were coming into the site. Obviously, a site generating over 10,000 hits a day is a good candidate for some online hacking. The first I knew was on Thursday when the site became inaccessible, by Friday large parts of the site were being defaced - it seems by automatically generated scripts. When the forum database fell over it failed rather spectacularly, although all the data is still present, all the posts, all the pictures etc is still available and safe.

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?

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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.

It is important to understand that Chiari Malformation and Syringomyelia do not just affect us physically, but can also have a detrimental effect upon our general well being and our ability to cope with the stresses and strains of our daily lives and that of our family and friends also. This can often lead to bouts of depression and anxiety, where a simply finding someone that knows what you are going through can help enormously.