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.

Hello JDelgado and WELCOME to Neurotalk!!!

Here is a link to our Arnold Chiari Malformation Forum:
http://neurotalk.psychcentral.com/forum71.html

Please feel free to roam around and join in anywhere!

If you have any questions or need assistance please don't hesitate to ask, someone will always be around shortly to help you in any way that we can.

I hope to see you around the boards!

Abbie

Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Just let us know if we can be of any help.

There are great number of fellow members here to assist as possible. My thoughts and prayers are with you.

Again welcome, looking forward to seeing you around.

Darlene

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

Thanks Gabbycakes for your reply. Unfortunately, the surgery is based on symptoms, and my symptoms, (I had only listed a few) are debilitating my life. I have prayed, researched, and prayed some more on what to do.

My symptoms are the inability to be mobile most days, limiting me to be in bed most of my days, the weakness in my arm/leg, the headaches, the burning sensations, the slurred speech, memory issues, tingly hands and feet, to name a few of them, have taken over me. I feel this is the only answer after doing so much research. (Been researching it since my MRI in August) just had a neurologist that insisted I was "attention seeking", suffering from Conversion disorder, and that my mental status was a "cry for help", he felt all my symptoms were in my head and that I would be a better patient for a psychiatrist. And that the low lying Cerebellum tonsil was nothing to be of concern. It was actually my family doctor that informed me of the low lying Cerebellum tonsil. I obtained a second opinion from one of the Top 5 neurosurgeons here in Michigan (she is also a specialist in the treatment of Chiari) and after 2 hours of intense examination, reviewing my MRI's, CT scans, and history, it was obvious what I had believed all along....chiari. I feel the surgery is my chance to lead a somewhat normal life again.

I did contact the other neurologist to inform him, and his staff had never heard of Chiari. That is scary, even though it is not widely diagnosed or known about, I would think a neurology office would have at least heard of this condition.

Will keep the board posted as to my progress. I pray that your daughter's herniation and tumor never develops any further, and she is able to live a full, healthy successful life.