Chiari Malformation Community
levels of Chiari Malformation
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This patient support community is for discussions relating to Chiari Malformation and Living with Chiari Malformation.

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levels of Chiari Malformation

Hello-
Two months ago I was driving my car and experienced a black out. I have continued to have dizzy spells, numbness in my hands and fingers, very bad head aches, pressure in my head, neck pain, tireness, sickness to my stomach, ect. Since that day I have undergone six MRI's, a spinal tap and several nuerologist and neurosuergon appointments. At first they were thinking I had a tumor, then MS and now, last week, I was dignosed with Chiari "kind-of."  My brain sits 5 mls lower than it should, which technically doesn't meet criteria for chiari as chiari is 6 mls. I had an MRI last week with flow study and my CF was fine or WNL. Due to this, my insurance company will not cover a surgry to fix the issues that Chiari is causing in my life. I was placed on Tegretol 300 mgs per day and told to return in 2 weeks. My doctor would not exactly explain what his hope would be for the Tegretol? I am not having seizures. Any ideas on what the tegretol is for?  Is this used to help Chiari symptoms? Is there anyone who has gotten around the 6ml issues and had surgery paid for by insurance? I can not live like this!
Thank you!
620923_tn?1393294254

  Hi and welcome to the Chiari forum.

All NS's seem to use a different criteria to classify Chiari ...HOWEVER...it should not be the length of the herniation but if ur skull is malformed. The herniation is a result of the malformation....

What u need to do next is check to see if u have a CSF obstruction, a CINE MRI is done for that...then u rule out all related conditions, since u may have ruled out unrelated with the MS etc....the symptoms are so similar they do have to rule them out.

I had surgery and one side of my tonsils were at 6mm's and 4mm...it is not how long they r but how they r affecting ur overall health and if u have a CSF obstruction.

Many Drs do not know this so u need a true Chiari specialist...see our list of Drs to use as a tool to research Drs...the list is not a referral, but a means to help u get started with ur research.
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