Arnold-Chiari Malformation Support Group

Arnold-Chiari malformation, sometimes referred to as 'Chiari malformation' or ACM, is a congenital anomaly of the brain. Arnold-Chiari Malformation II occurs in almost all children born with both spina bifida and hydrocephalus, but ACM I is typically seen in children and adults without spina bifida.

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New Member to Group and New To Chiari Malformation

Hello everyone!


I was diagnosed with Chiari in March of this year. It took 5 years of headaches before I was given an MRI in order to find this diagnosis.  I went to the Barrow Brain and Spine Institute yesterday and spoke to the neurosurgeon. According to him, the tonsils of my brain decend about 2.5 cm. He said that he is surprised I am not having trouble with fine motor skills right now.  He has reccommended surgery, but my husband and I are still thinking about it and if I do decide on it, the surgery won't be until January or February of next year.


This is really scary for me because I don't know what to expect.


I just want to introduce myself and I can't wait to speak with you all!

Replies

FabulouslyFlawed
FabulouslyFlawed

I was diagnosed less than a month ago. I'm meeting the neurosurgeon tomorrow. I am terrified. I'm glad to have found a group of people experiencing the same things.
Buttercup16
Buttercup16

Hello there!
I too have a Chiari 1, but they didn't make a deal of it, so I want to speak to a neuro... In what state did you visit a specialist? I have concentration and have bad memory issues (amnesia ) do any of you? This is definitely My biggest concern. I was being tested for early onset Alzheimer's at 44, when the migraines were so awful then they did the MRI
painpleasegoaway
painpleasegoaway

Hi, I have Chiari and iih, I had horrible headache for 23 years before a doctor did and mri to find mine and actually that was because I had a pseudo seizure horrible taken to er to find it, anyway that was 3 years ago I had decompression surgery and I guess that many years of symptoms they were stuck with me I am more scared of having a shunt then u was for brain surgery so I haven't yet but thinking about traveling to barrow in AZ I'm in Utah and nobody knows anything anywayjust introducing my self