Chiari Online Support Group

I am all new to this,53 years

I just found out 2 weeks ago have to have surgery, for chiari,already have all kinds of symptoms,

My pcp was Amazing, he sent me to a neurologist, who sent me that very day for aMri of neck and brain

I am also 53 and my symptoms only started 5 years ago. The question to have answered is, if this is a birth defect, why didn’t it cause problems all my life? Mine turned out to be leaking cerebral spinal fluid. It just looked like chiari and I almost had unnecessary surgery.

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I am 53 as well and newly diagnosed. According to my doctor it happened while I was a developing fetus and I was told symptoms either present at birth or later in life… later…for me… awaiting neurosurgeon consult now… what are your symptoms… mine is a throbbing in my head whenever I exert such as bend, sneeze, etc

Im 53 very similar symptoms. Luckily had an old MRI that showed no sign of chiari. This was proof that my problem was just a leak in my CFS fluid, likely from a car accident a few year back. Hopkins found and fixed 6 leaks that another hospital could find.

Cindy, I also had very bad headaches from bending foreword, coughing, sneezing, even laughing. They would often go away from laying on my back. Being even a little dehydrated made them worse. My neck would be tired by the afternoon and I would want to lay down. Posture- improving exercises made things slightly better.
My MRI from advanced radiology said the “cranial slumping”symptom could indicate “intercranial hypotension.“. No doctors I saw at that time were familiar with that condition.
I had to ask the Neurologist to look for leaks because I had read about the condition online. My thinking was, chiari would look like too high of pressure (hypertension) in my head instead of too low (hypotension)
I would get second opinion from a doctor familiar with intercranial hypotension.

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