Arnold-Chiari Malformation Support Group

Arnold-Chiari malformation, sometimes referred to as 'Chiari malformation' or ACM, is a congenital anomaly of the brain. Arnold-Chiari Malformation II occurs in almost all children born with both spina bifida and hydrocephalus, but ACM I is typically seen in children and adults without spina bifida.

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Need Neurosurgeon in Northeast: 4mm Herniation

I've been "sick" (as much as I hate to use that word) for the last 12 years. There's been one diagnosis after another, but they've all eventually been disproven and I'm just left with a host of debilitating symptoms that can't be explained. All of my specialists are agreement that there's definitely something physically wrong that's causing all of my symptoms, but they just haven't been able to pinpoint what: neurological lyme disease, lupus, multiple sclerosis, fibromyalgia, sjogren syndrome, marfan syndrome, hemochromatosis, epilepsy, gillian-barre, connective tissue disorder...I could go on and on, as I'm sure many of you can as well.

A recent cervical MRI revealed a tonsillar herniation of 4mm and a possible Chiari malformation. I began researching Chiari and it's THE most perfect fit of all the diagnoses that I've had over the years! Looking back, it makes a lot of sense. I literally can't remember a day that I haven't woken up without a headache...and I'm in my early 30's. My mom -- who still has my pediatrician notes from the 1980s! -- sees that I was diagnosed with migraines at age 4. The headaches became debilitating following a concussion from a surfing accident 12 years ago...that's also when all of the other whacky symptoms began emerging. Over the last 12 years, symptoms have increasingly interfered with my life to the point that I've had to go on medical leave every other semester. I just completed by 6th year of what was supposed to have been a 3 year graduate program. Life is NOT how I'd ever imagined it would be. This recent MRI and learning of Chiari has given me great hope, but then I began to read about the controversy surrounding cases of minimal tonsillar herniation.

I don't have the time or money (and honestly, not the emotional strength) to go through another series of specialists that don't know what to do with me. So I'm writing for help. I've done tons of research (if only Chiari research could be a part of my graduate thesis, I'd be set!) and can find great Chiari neurosurgeons...BUT aside from a handful of comments here and there, I have trouble determining which surgeons "believe in" borderline Chiari cases like mine. Would anyone with similar experiences or knowledge about a specific surgeon's practices PLEASE post or message me with suggestions? Ideally, I'd like to find someone in the northeast (MA, NY, PA, NJ, DE, MD, DC, VA -- even NC would be okay). Would be appreciative for recommendations and warnings (i.e. don't waste your time with Dr. X because he won't even look at you unless your herniation is significant).

Thank you all in advance :)

Replies

razorbacks
razorbacks

dr henderson , dr saul , dr rosner
kris278
kris278

Thanks for the suggestions, razorbacks! I recognize both Dr. Henderson and Dr. Rosner. Where is Dr. Saul??
razorbacks
razorbacks

Iowa city .... another dr is Dr Greenfield
tequilasunrise
tequilasunrise

the chiari institute. in great neck new york. they handle all testing and procedures. all the doctors are chiari experts.
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