Rare occurrence of Chiari I (I think!)

[Guest guest]

For all of you new people, and any others who don't know this story, my

daughter was first diagnosed with Chiari I malformation May 98. She had

progressive symptoms since infancy, born July 93. Among them were:

abnormal eye movement, nystagmus, photophobia, occasional color

blindness and blindness, tearing of the eyes, hearing difficulties,

tinnitus, hypersensitivity to noise, choking/gagging (often, on

nothing), dysphasia, apnea, unexplained head sweats, constant fatigue,

trembling of parts of or entire body, occipital headaches

The worsening respiratory related symptoms were the most worrying and

what made us decide for the surgery.

All these symptoms were resolved with Chiari decompression surgery, Jan

99. The " rare " thing about her case was that she had NO cerebellar

tonsillar herniation...at least I think it's rare. She was only

diagnosed with Chiari I by Dr Milhorat (NY) and Dr Frim (Chicago).

During surgery, it was discovered that her tonsils were underdeveloped

and were referred to as " short nubs " . She had general overcrowding and

CSF flow problems and few other abnormalities.

So, those docs who say Chiari cannot cause symptoms, or those who say

you need " significant " herniation to warrant surgery, need to read the

literature and keep an open mind ... and told by ex-patients who had

successfull surgery that it helped them.

We're blessed that our daughter continues to do well from the surgery,

almost one year post-op.

Welcome to all the new members.

Eurico