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Seizures with Chiari???

Posted , 3 users are following.

k8779
k8779

Has anyone had seizures, specifically nocturnal seizures associated with Chiari?

0 likes, 4 replies

4 Replies

  • Evella4
    Evella4 k8779

    Posted

    Yes! I have them! I am now on Epilepsy medication. I am told by by the Neurologist department at UCSF that I don't have CHIARI Malformation 1 but Sutter North Disputes. The MRI from Sutter North shows I have CHIARI Malformation 1 with 6.8 tonsil herniation. The MRI was taken twice. Then at UCSF the MRI said o have a low underlying slope of the brain. I have siezures everyday and the most violent one I had lasted about 20 minutes. I was unable to walk for three days. I had speech problems, balance problems, and my memory was off. So now I continue to take Topomax and now I've been put on Epilepsy medication.

    • b2wc97455
      b2wc97455 Evella4

      Posted

      Ask for second opinion or ask them to refer you to the neuro surgeon who know better, If I did not have blacked pout/seizure I would not bother to have decompress, but I was all the time and have no balance and pain like hell..but after surgery I am OK
    • Evella4
      Evella4 b2wc97455

      Posted

      I did go to a NEURO sergeon that specializes in CHIARI and he wanted to operate but my husband was not convinced. So we went to UCSF. I don't know what to believe. This is getting worse and no one is listening to me. Not even my husband! He rather I take drugs that could possibly do harm long term.

  • b2wc97455
    b2wc97455 k8779

    Posted

    Hi there,

    I have it all the time and painful as well prior to surgery, but after the surgery I am fine

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