New DX

[Nanna B]

Last Friday I had an MRI and it appears that I have a Chiari malformation. :eek:

We are scrambling to get as much information and looking for doctors, making appointments, etc.

I went to an old family doctor. He ordered the MRI, and I got the results yesterday. I was not prepared or expected that result! Truly, I expected it to be negative.

Thanks
nan

[Tootsie]

There is an Arnold Chiari Forum here at braintalk. I'm sure the folks there can answer your questions and give you lots of good advice. Cheerio.

[MichelleC]

Maybe that's good news. Maybe the doctors can solve some of your symptoms by treating the Chiari.....

Michelle

[Fayelle]

Wow,

That has to be a double edged sword...On one hand yay not another frustrating negative test, and then yikes they found something.....

I have actually heard someone else say after a fibro DX that chiari was found and they felt better after being treated for it......

I hope this helps you in a positive manner!

Fay

[Nanna B]

You are right Fay, WOW!

That is all I keep thinking too.

We found a doctor at the Cleveland Clinic that is versed with Chiari and Fibro, we are very hopeful to see him.

It's all good. I am keeping my chin up and a positive attitude.

Thanks for your support.
nan

[anglem98]

Hi Nana B,
Try the Chiari malformation institue in Manhassett long island ny the number is (516) 570-4400 they did my chiari surgery 4 years ago. they are the best. Dr. Milhorat, Thomas

[uvamomb]

Oh, Nan, what great news for you!!!! I believe - is that the one that can be surgically corrected? Oh, I hope so. Doesn't it make you feel great to have some hope!!!!
My heart and love goes out to you,
Kathy:) :D ;)

[CathyE]

Here is the link to a relatively new Chiari Support group:
Yahoo Chiari Connection International
http://health.groups.yahoo.com/group/ChiariConnectionInternational

It is very active!

I have Hydro and had "Fibro" (not a true diagnosis) before I was shunted at age 50, 5 1/2 years ago. I was on this Fibro forum for about 6 mnths. As soon as I got shunted, my "Fibro" went away!!!

I was thinking I was getting Fibro symptoms again.
But several people tell me my symptoms I get from over draining sound more like Chiari. So I joined to look into it.

Good luck.

And I have read for several years that The Chiari Institute is the best place for treatment. as someone already mentioned, in New York City. Several of our Hydro members also have Chiari.

Good Luck,
Cathy
(I was MaryCK 6 years ago if anyone remembers me!) I go by my middle name)