I’ve diagnosed myself

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So I went to my doctor and showed him my mri I had in 2017 and pointed out that my cerebellar tonsils looked herniated and so he ordered another mri and come to find out i was at 12mm and now I’m at 18mm so they are sending me to a neurosurgeon!! I hope I can one day be headache free!!!

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  • Posted

    Nobody here in Rockford knows what they are doing when it comes to alot of things especially Arnold Chiari. I had an MRI the end of 2017 because I insisted on it. Apparently mybArnild Chiari has rapidly progressed down to c6/ c7 however there's nothing they will do for me because I've already had 2 Chiari Malformation repairs. I need to find a specialist in either Chicago or Madison, Wisconsin area.

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  • Posted

    Really hope you get the help you need.. watching 2 of my kids go threw this kills me so I no ur pain... keep strong and push for what u need xx
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  • Posted

    I have a little girl who went threw major surgery her chiari was worst they had seen it took me 6 months going to doctors and opticians. . In the end I stood in the hospital shouted and screamed till they looked at her.. within 2 days she had surgery over and over again to make my baby better.. I nowill found out my baby boy of are family has same condition but not as bad in ther eyes.. but he rolls around the floor with head aches and I will not take he's ok for an answer because I nearly lost my baby girl and will not let this happen again.. keep pushing and don't let doctors fib u off xx

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    • Posted

      Please check out the Institute de Chiari in Barcelona, Spain.  Dr. Salvador has linked a tight filum terminale as the cause of the hindbrain herniation.  I had decompression surgery in the US, which gave me about 4 weeks of false hope, then I had the 45 minute outpatient surgery at the clinic in Barcelona, and now lead a very productive life.  Spent 2-1/2 years in bed, and now raising kids again, church, ebay, renovating a house, etc.  There are 3 doctors in the US that do a similar surgery, but the process can take up to 1 year or more before having the surgery, whereas we were in Spain and  back within 6 weeks of starting the process.  God bless, Steve
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  • Posted

    Chiari decompression surgery does not get rid of the cause.  I had the decompression surgery here in the states, which gave me abut 4 weeks of false hope, then I had filum terminale dissectum surgery in Spain, which removed the cause.  Browse the Institute Chiari in Barcelona website.  It is a 45 minute outpatient surgery and releases the downward pull of the tonsils, and for me, with some safe inversion therapy was nothing short of a miracle.  I went from living in the bed for 2-1/2 years to now being able to live a very productive life: raising kids, church activities, running household, renovating a home, traveling, etc.  God bless, Steve.
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  • Posted

    Hi there,

    So...just make sure you get the understanding Neurosurgeon and have experiences in surgery - I am the happiest person only after surgery - taking me 6 - 8 weeks to gradually got better.

    Good Luck

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