Disagreement on Diagnostic Criteria

[Guest guest]

I cannot emphasize the importance of getting an expert opinion on your

Chiari situation. Quite often, neurologists dismiss it as being " nothing. "

I had numerous MRIs and as time went on, I think the quality improved and

the length became more apparent. Finally I had a Cine MRI, which shows the

movement of cerebral-spinal fluid (CSF). I had no movement in one direction

and it was difficult to tell in the other.

I was told more than once that it wasn't causing me my problems. I was

labeled a hypochondriac. The fact is that my Chiari was down into my second

cervical vertebrae. It was major. When Dr. Menezes got in there, my brains

had turned white. He told my sister that it should have been taken care of

earlier. Well, duh! I am very fortunate to be doing very well now, although

I will always have Chiari and will have to be careful with some things.

I look to the doctors involved in the Chiari-related organizations, such as

ASAP, CSF and Conquer Chiari. I think there might be another one, but I

can't remember. Look who is on their medical boards. Look at who they use in

their videos. They have a special interest in Chiari and are more likely to

know what they should about it. You may have to travel. Don't think because

you live in a good-sized city or that you have a major clinic or hospital

nearby that they have a Chiari expert there.

Suzanne