The first thing that many people freshly diagnosed, either officially or unofficially do is try and find out as much as they can about it.

Unfortunately if that person doesn't have a computer, then its all but impossible to do.

What is even more unfortunate, is that if the person DOES have a computer, it is so easy to open up their browser and type in "chiari malformation" and whatever other search key phrase that they use.

At this point a lot of people lose the will to live with all of the "useful" looking american information on Chiari, video's on YouTube about decompression surgery, pictures of the HUGE scars that our friends in the USA often end up with for some reason, babblygeek like jargon that they haven't a chance of understanding, and nowhere else to ask any questions of people just like them.............. I know, I did it and have listened to people who I have since met go through exactly the same thing!!!!!!

I eventually found a UK forum where the membership were very welcoming, very knowledgeable and sounded just like you and me. Within hours and thanks to these people, I had all the answers that I needed and all of the information that I needed to ask more questions of my neurosurgeon!!! For weeks I had given myself a natural laxative by searching for information on a daily basis. I could not have got through what I have so far without them.

Gladly I have been able to help others that have joined since. That the benefit of belonging to a group of people like that. I have also made some wonderful friends that I hope to actually meet one day.

I owe them a lot !!!!

www.chiari.co.uk and join the forum.

Tell them Chris sent you! See you there?

Other links:
Glossary
Government petition to raise awareness
So what is Chiari malformation?