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Chiari Experts

Posted Nov 17 2008 11:44pm
Finding a knowledgeable, experienced doctor to help you manage your Chiari is vitally important. I have already written this at the end of my personal story, but it bears repeating: Never blindly trust a doctor to tell you what is best for you. Educate yourself. Research your treatment options... Don’t be someone’s guinea pig. Don’t be afraid to ask lots and lots of questions. If you don’t like the answers, keep looking. It will be worth it. YOU are worth it.

I would start by reading Rick Labuda's excellent article, "Finding A Doctor, You Have To Do The Work..." on

You may also find help in Barbara Kane's article, "What questions do I ask when I am deciding on a CM/SM physician?" on ASAP's website. (American Syringomyelia Alliance Project)

Next, you can review lists of doctors compiled by Chiari associations:

Christopher Burton's Syringomyelia Foundation has a long list of doctors on their website. It is a PDF file, so it should be easy to print out.

WACMA (The World Arnold- Chiari Malformation Association) has a member compiled list of doctors on their website. An asterisk alongside a doctors listing means they have been recommended by either their peers, many patients, or are known to have expertise in the field of Chiari Malformations. WACMA also has a list of things to discuss with your doctor before surgery.

CCI ( Chiari Connection International) has a map showing the location of doctors recommended by its members. When you click on the map, the doctor's name and contact information will pop up. Some listings include contact information of a person who has had recent experience with that particular doctor. You can email that person to ask about their experience, which may be positive or negative. The list of the names is also available HERE. An asterisk by the name indicates a doctor that has been recommended by group members or has expertise in the Chiari field.
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