Hi Out there,
My name is Lisa and my 17 year old daughter has just been diagnosed with CM-1. Ten months ago she was in a car accident as the passenger. Her injuries appeared only to be her face and her eyes. She was left with an eye bleed behind her left eye (already legally blind in her right eye since birth under developed optic nerve) this eye bleed left her temporarily blind for two weeks. About two week after the accident, she started complaining of headaches in the back of her head. Her eyes would get puffy and glossy. When they come which is daily all she want to do is sleep. No neurologist wanted to take her case because of the auto accident. Finally, last month we found a neurology center to take her. The first course of action was an MRI. Last monday, they diagnosed her with CM-1. Last Thursday, she went in for her CSF MRI and now today I got a call he wants her to go to the Chiari Institute in New York. I have been researching like CRAZY and I am so confused. I found two glowing reviews on Dr. Fieldstrom and Anderson at Columbia University in NY. She want to just go where the dr. says but my mom spider sense says research so hear I am. anyone please anyone out there that has experience with either of these hospitals. Help Me. any advice PLEASE. We head to dr. tomorrow 9/23
Lisa