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Both my kids have Chiari

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  • LIZARD66
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    (((Rose ))) <3

    Sadly, I know no neuro nor PCP will know much. I got a new PCP last year. He looked at my info and said, "So, you think you have hydrocephalus?" I could have taken off running then, but when I said "No, I've had it for 55 years and had six surgeries for it," he seemed intrigued and more willing to listen. I'm learning, though, that Chiari often strikes multiple family members, and it wouldn't shock me to learn some of mine have it, but no one has been checked. Meantime, I had a recent brain/spine MRI for something else in the process of being dx'ed, and I want my nsg to check it out carefully for Chiari or anything else that might hint as to why my kids have it, and I have this insanely torturous internal inferno. It feels like acid is pouring through my body. I just had two EMGs and will get my results next week.

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  • agate
    replied
    LIZARD, I don't know if this will be of any help to you but it provides some basic information about Chiari malformation:

    Only registered and activated users can see links., Click Here To Register...

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  • Earth Mother 2 Angels
    replied
    ((((((LIZARD)))))) ~

    BACK TO BRAINTALK!

    I remember you! My "home forum" is Child Neurology, but many of our kids had hydrocephalus, so I visited and posted there many times.

    Unfortunately, this forum hasn't been active for awhile, so I don't know whether you will receive a response from someone, who has experience and knowledge.

    However, I am a mom of two sons, who had multiple disabilities, so I can certainly support you through this journey.

    While you wait for an experienced and knowledgeable person, you might try scouring the internet for all of the available information about Chiari. If you have a neurologist, or even your PCP, you could ask for guidance and information from them.

    This must be stressful for you and your children. Sending prayers and healing, positive energy to all of you.

    Love & Light,

    ❤️❤️❤️❤️

    Rose

    *Virtual Hugs Are Germ-Free!


    THANKS!


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  • LIZARD66
    started a topic Both my kids have Chiari

    Both my kids have Chiari

    I was here several years ago (LIZARD). I have hydrocephalus. My son was dx'ed with Chiari at 5 1/2 (now 27). He's also autistic. Well...three years ago, my daughter called me from a hospital in VA (where she lives), saying she went in with a fever a stiff neck. I immediately thought meningitis, but she said she was checked and didn't have it. She did have Chiari and Lyme.

    So since then, I've wondered. I have never been told I have Chiari and am not aware of any signs, so where did this come from??!! Anyone relate?
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