Thanks for the reply and I'm glad things are working out for your nephew...and I'm sorry about your sister. As you said, I think the key is to be proactive about getting results instead of waiting. I will look for a doctor where you mentioned maybe they can help. Thanks again!!

There are other Chiari experts around the US . Where do you live ? Might be able to help you find one close toyour home. That other Xray you put up its hard to tell.

Currently live in eastern NC...very close to Raleigh. Duke and Univ of NC are both fairly close. Do you know of any experts near Raleigh? Thanks.

Here is a map with suggested drs from Patients . Dr. Rosner in NC is good
http://www.chiariconnectioninternational.com/map.html

also :
NORTH CAROLINA
Dr. James Adelman
Neurologist
510 N. Elam Ave.
Greensboro, NC 27403
336.547.8000
Dr. Herbert Fuchs
Neurosurgeon
Duke University
Raleigh, NC
Dr. Robin Koeleveld
Wake Medical Center
Raleigh, NC

Also :
North Carolina Tim George - Neurosurgeon Duke Medical #3272
Durham, N.C. 27710 (919) 684-5013

I was wondering if any of you that have been diagnosed with Chiari, was it hard to get diagnosed? I was diagnosed with Migraines about 9 years ago, and all docs want to do is hand me a pill & tell me hopefully they will go away around retirement. To me, that is not an answer. I have been experiencing other symptoms lately too. The headaches I get don't seem like Migraines, they are more like pressure in the back of my head inbetween my ears, worse with bending over or straining. My hearing is muffled. My eye balls hurt (I know, sounds weird). The light hurts my eyes. I get dizzy spells, nausious out of the blue. My R eye brow sags. I have a hard time sleeping because I wakeup in pain. It literally hurts for my head to sit on my spine. I had a brain MRI 08/07 & the report said the cerebellar tonsils are 8mm below the foremun magnum thingy but do not meet the criteria for Chiari1. I have recently researched this Chiari & the symptoms I have are similar, also there seems to be some conflict in the criteria. Can anyone help please? Any input would be appreciated.

Umm...who told you that?? An idiot neurologist?? An 8 mm herniation is significant!! Even a slight herniation of less than 5 mm (Chiari 0) can bring on severe symptoms for some patients. If you haven't yet, get your MRI checked out by a neurosurgeon who is well-versed in Chiari...and not all nsgs are. You can get a ref from the following sites:

www.WACMA.com
www.ASAP.org
www.chiarione.org
www.conquerchiari.org

Good luck!

LIZARD

Well, went back to the NL to talk about the Chiari. He said I do have Chiari 1 but you never want to do anything about it untill it is at least a 3. I took my films with me, he looked at me & said I know that radiologist, he is very laid back but smart as hell, so I am not going to bother looking at your films. Now, how is that for great healthcare? I'm telling you I am really going to loose it soon. I am so frustrated with doctors. I did get a lead on a doc in Orlando, put in a call to him, still waiting to hear back. I need a doc that knows & treats Chiari. My NL said I have Migraine caused by Occipital Neuralgia. He put me on Xanax, .5 - 1MG 3 x's a day people. What the hell?!? He said if this doesn't work then I will have to get Cortisone shots in my neck. Yeah, whatever! I heard those can actually cause major nerve damage, plus I am not a fan of needles. Of course, this is all after he brought up 3 other meds I have already been on, and they didn't work. Hello, if we are running out of options, don't you think that maybe it could be something else?!?!?! If anyone has any information for me it would be greatly appreciated. I am at a loss. Has anyone else had lots of symptoms with a 8MM herniation?

Lizard - thank you for your reply. I appreciate it. God bless.

do you live in Jacksonville Florida ? There is a Chiari expert in Florida . Google Dr. BARTH GREEN

"She basically gets extremely fatigued to where she can barely walk, she has seizure like episodes, poor memory, speech and coordination problems..."

They tested me for MS and lots of other things too and found nothing for 7 years. I have a chiari type 1 and syringomyelia. See a neurologist until they figure out what it is that's going on.

Tell your wife, I know how she feels. Those were my symptoms. Not "seizures" but points when outta nowhere my eyes would cross to where I couldn't see and they would shake...I'd go ghostly white, then red faced...cold sweats...my muscles quivered...I couldn't walk or stand...lost ALL sense of equilibrium...sick to my stomach...slurred speech...poor hearing...absolutely no sense of pain except that my head hurt so bad...and I have the speech problems, coordination issues, and some really hardcore memory stuff.

From the symptoms, I would think have chiari checked for. I'm not a doctor, though, I can't diagnose. As a last thought, if it IS chiari...the decompression surgery isn't that bad. I had it...put me out of commission for about a week and a half...after three days, I could do things, just tired and really stiff. But it helped EXCEPTIONALLY. I might have a "seizure episode" about once every 5 or 6 months when before it was at least once a week. And my coordination has gotten better and I just FEEL better. So if that's what it is, have the surgery. It's so much better than before.

Anything else I can answer, please ask.

Good luck and God bless.