This is a disorder with brain outlet crowding and cysts in the spinal cord. Having this condition means that you likely will be treated very poorly by the medical community because imaging is poor and people don’t want to believe your symptoms. The signs of myelopathy (spinal damage) that one can have can be very non-specific – gait issues, somewhat hyperactive reflexes etc. which can be discounted. I have on brave soul who was wheelchair bound before she received much help- and only then with help she received from th Chiari Institute in Florida. She put together a list of resources she found helpful and I have included them here verbatum:
The Chiari Centre in New York, which provides videos, doctors, all the information you ever need on Chiari and Syringomyelia
Conquer Chiari – This is a very informative site on both Chiari and Syringomyelia and they send you out regular newsletters on any current and updated information.
Self help groups that are exceptionally good with a whole lot of information to learn. Able to talk with other people who may think they have this disease or are in fact diagnosed with this disease, or loved ones wanting information on the subject:
http://health.groups.yahoo.com/group/chiari/ – this group works together with the Chiari Institute and you can easily hook up with doctors and nurses as the site is frequently visited by Dr. Balonesese, himself, from the institute.
Another great self-help group with some Saskatchewan people on it is:
http://groups.msn.com/arnoldchiarimalformation – This has lots of good information and good people to talk with.
Any more links? – let me know.
list of other links here: