that really doesnt look like Chiari 1 , poss chiari 0

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

DFaulk,

I live in Raleigh as well. One group I would not suggested is Raleigh Neurology. They are not interested in their patients individually as they have way too many per neurologist and Nurse Practitioners.

I too am having the same symptoms as your wife. I have been to Duke and they are very good about getting things straightened out. If possible get in to see Dr. Strine at DUMC 1L. Here is his information:

Duke Clinics
(919) 668-7600
Dr. Strine’s Office # (919)-681-1608

Glenwood Ave/US-70 W - 4.5 mi
Left onto TW Alxander Dr. - 4.0 mi
Merge onto NC-147 N toward Durham - 7.6 mi
Exit 15A Elba St./Trent Dr. - 0.3 mi
Slight Left onto Trent Dr. Ramp - <0.1 mi
Slight Left onto Trent Drive

I live off of Glenwood Ave. so you may have to adjust the directions.

I too was having "seizures", so Dr. Strine sent me to see Dr. Radtke who is a specialist in "seizures, seizure like episodes". He is in the same department as Dr. Strine.

When you call to make the appt(if you call Duke)use the first number above. That is DUMC(Duke University Medical Clinic). That is where these two specialist practice. The office number is if you need prescription refills or need to talk to Dr. Strine personally.

They are very good specialist. All though I haven't gotten all my answers, I can tell you that they don't leave you in the dark. Dr. Radte even gives out his email address so that you can contact him with any concerns.

I hope this helps you. Best wishes to you and your wife.

Missy

Ok peps, I am going to Orlando! Someone recommended a doctor in orlando named Dr. William Lu, I go see him 10/25/07. He is experienced in Chiari and treatment, so I will pray he can help me.

As an update we are scheduled to see Dr Paolo Bolognese, a Neurosurgen, of the Chiari Institute in Great Neck, NY. We submitted all of my wifes information, they reviewed it and have decided to see her based on everything we have said and submitted. It seems the Chiari Institute is on the leading edge of Chiari research, diagnosis, and treatment. I would recommend them to anyone who thinks that Chiari could be a possibility and are getting no support from their Neurologist. Just realize that most Neurologists rely on a Radiologists to review your films and make the diagnosis. The problem with this is that the Radiologists isn't familiar with your symptoms and is only looking at the midline of your MRI and looking for a minimum of 5mm herniation below the foramen magnum. Again, the problem with this is that the part of the cerebellum that herniates is generally the tonsil and they are not actually at the midline...they are both on the left and the right side of the midline. A Chiari Malformation can easily be missed by a normal Radiologists and Neurosurgeon that isn't familiar with the latest data on the diagnosis of this problem. I would venture to say that there are 1,000's of people out there suffering from this trearable condition with either no diagnosis or even worse...with the wrong diagnosis like MS or migraines and simply get a pill and are sent home.

To everyone out there with unexplained problem...DO NOT sit and wait for a doctor to do what is right for you. 99% of the doctors out there are looking for the easy answer to a difficult problem and quickly become frustrated when they can't actually diagnose you and will quickly leave you behind and not return phone calls. Use the internet if needed and find a specialist who truly cares and is willing to stray slightly from the mainstream and actually listens to you.

Hello I live in western NC and was just diagnosed will chiari I malformation. I have had severe headaches for 10 years and my drs would say oh its tension headaches or no its a migrain. I knew they were wrong. I had a gut feeling there was something seriously wrong with me. There are so much more than just a headache. I also have the vision of a 50-60 yr old and I am 27. I struggle sometimes with opening things like my sons sippy cup. my arms and legs go to sleep for no reason. I am waiting to hear from the brain dr. to find out when I talk to a neuosurgeon. She said they may not do the surgery. I am pretty bummed at the moment thinking that is what they will say. For so long I had know idea what was wrong with me. Now I know and I know the surgery will more than likely fix it and I am worried they will tell me no. I don't want to go the rest of my life takeing meds everyday. These headaches have goten alot worse in the last year to where I am having them 3-5 days aweek and somedays like today they last for several days. The pain is getting worse too. I am so tired of this I just want it to stop. The thought hit me last night what are the chances my son has this acm? Also what are the chances of passing it to you children in general. Does this mean no more kids for us? If any has any information to share I would greatly appreciate it. I don't know alot about this or the stats. Thanks and God bless.

dfaulk, ebean - I was just wondering if there were any updates re: wife and your own conditions.

M