message for Judy

[Guest guest]

Hi Judy,

Instead of responding to you, I thought I'd post the info here in

case anyone else might be helped.

Chiari can be very VERY hard to detect. As an example...I have had

headaches since I was a teen. By age 28, I had a CONSTANT

headache. you'd THINK someone would have ordered an mri...

Finally, at age 33, I suspected chiari. I pushed my neurologist for

an mri. MRI was normal. I specifically asked him if it was

possible I have chiari. He said no. I then made an appt with Dr.

Jon Weingart at s Hopkins. He also said there was no chiari. I

then went to the Chiari Institute in NY and guess what....I was

diagnosed!

Now, at this point I was so confused...and used to disappointment.

I actually got a sneaking suspicion that Dr. B (at TCI) might be

wrong and started to doubt the diagnosis.

But, then, a week later I called my aunt who lives very far from

me. We aren't very close so, I had never really told her about my

issues. Well, this time I told her about my diagnosis. Long story

short....SHE informed me that my mother's first cousin also has

chiari! AND, hers is 9mm (NOT a borderline case). So, now, I had

no doubt...the doctors in NY were right.

fyi, you can find out more info on www.chiarione.org

Three steps if you suspect you have chiari:

1. GET AN MRI - and be sure to get copies for yourself

2. Consider having a spinal tap done to check your csf pressure

(consider this carefully as there are risks and you can feel pretty

darned bad afterwards). After my diagnosis, I had this done and

sure enough, my pressure was high. THIS gave me definitive proof

there was a problem that no doctor could deny.

3. Join the wacma chiari group online (it's the yahoo group

named " chiari " that has more than 4000 members)

Good luck,