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Old 09-12-2007, 10:50 AM #1
wendy32221 wendy32221 is offline
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Default Possible Chiari 1

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.
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Old 09-23-2007, 08:40 AM #2
LIZARD LIZARD is offline
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Exclamation

Quote:
Originally Posted by wendy32221 View Post
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.
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!

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Old 09-26-2007, 03:25 PM #3
wendy32221 wendy32221 is offline
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Confused

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.
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Old 09-27-2007, 02:49 PM #4
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Default chiari

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