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Originally Posted by jdelgado4169
I have recently been diagnosed after two long months of specialists, tests, and being told its all in my head with Chiari Malformation 1. I am scheduled for decompression surgery next week, after 1 day of learning of my diagnosis. I do not know my herniation number, but the surgeon stated it is fairly severe and we needed to schedule asap.
After my entire life of living as a clutzy, sickly child, it is wonderful to know all these years, it has not been me, but the CM1 that has caused this. I am looking for any advice for after surgery, what made you most comfortable, is there anything your support caregivers could do to help with the recovery process etc.
I have been experiencing burning sensations (neck & back), headaches, muscle weakness (left side), eye drooping, balance issues, motor skill reduction, just to list a few. Looking forward to communicating with anyone who has or has had CM1 to better understand this debilitating disease.
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Hi ,
I just wanted to tell you what I have been told about CM. My young 16 your old daughter as a "Slight Type 1" CM.. I have consulted with the Chiari Insitiute in Long Island, NY and now is with the top Peds-Neuro surgeon out of NY Presb./Cornell in NYC. His exact statement to us was "she has a slight type 1 cm, it will not change, does not require surgery and will proably never really effect her". What they found in addition is a pin head size tumor in her brain tissue, which he is just monitoring with MRI's with contrast. At first we did them every 3 months and there was no change now he does it every 6 months. Believe me when I first heard all this I almost passed out right in the doctors office.
The Chiari Insitute in Long Island NY is suppose to be the best. When I first got the dx. I called them. They had me send all the mri's and to make a long story short they said she was not a canditate for the institute because she only had a Type 1 cm and they deal with severe cases. So when you say you have a type 1 and having surgery asap I would maybe question that. Google the Chiari Insitute and maybe call them.
Good Luck
Gabbycakes