Hi Christine,
Welcome to NeuroTalk!

I've posted the link to the Rare Diseases Subforum for you. There is a forum within this one regarding Chiari Malformation.
http://neurotalk.psychcentral.com/forum87.html
Sounds like you have really been through a lot. This site is full of wonderful, caring people and I feel certain that you'll find the help and support you seek. Please feel free to visit any of the forums and jump right in wherever you feel comfortable.
Please let us know if you have any questions.
Kelly