Chiari malformation

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I have a 17 year old daughter that was having severe headaches, blurred vision , back aches couldn’t concentrate at times. We had gone several times in a three month span to the pediatrician until finally one of the partners suggested an MRI. Four months ago she was diagnosed. After meeting with the neurosurgeon they decided to try occipital nerve black one week after the procedure the symptoms came back. They have her on topamax for pain one pill a day if needed. We are going to be meeting with a neurologist on the 21. As a parent I feel terrible some days she’s fine and other days the pain is so bad that she lays in bed crying. Any suggestions ?

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  • Posted

    I would suggest seeing a neurosurgeon and discuss having the posterior fossa decompression surgery. I never heard of symptoms just going away once they develop. They seem to either stay the same or get worse. The chiari causes a blockage of spinal fluid which needs to be allieviated and if it’s not, syrinxs can form which make matters worse. There is no gaurentee that surgery will eliminate all symptoms but it’s still recommended to have the surgery because your CSF fluid needs to be able to flow properly. 
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    Safer route than decompression surgery is filum terminale dissectum surgery.  Think of Chiari as a cork blocking CFS at the junction between skull and spine.  Chiari decompression (I have had this) tries to make room for more CFS to flow, but does not get rid of cause.  Dissectum surgery works by releasing tension on the downward pull of the brain, thus removing the CAUSE, causing cork (bottom of brain) to move up.  I have had both the 6 hour decompression surgery (no help for me), and the 45 minute dissectum surgery (got me out of bed after 2-1/2 years). Four neurosurgeons is US do surgery, and one in Spain (where I went).  Do your research and Godbless.
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