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New chiari diagnosis questions

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ashley09624
ashley09624

I am 29 years old and was just diagnosed after previously being diagnosed with chronic migraines. I had an MRI 9 months ago with no mention of chiari and then again just two weeks ago showing the malformation only after telling my doctors that it is something in my family and a concer I had about my health. I fully believe it was present on the first MRI and the radiologist just wasn't looking. I have been having migraines on a daily basis for the past year and a half ranging in severity. I have also had substantial neck pain for the last 7 years and always thought it was related to old horse riding accidents. Haven't ridden a horse in well over 8 years. I know have numbness in the three outside fingers on my left hand that has been going on for over a week and the headaches keep getting worse especially with the summer weather changes. It takes some time to get in for an appointment around here and my Neurologist won't see me for another week. Over the past year he has had me on numerous medications to treat the headaches and tried to quite my concerns. I guess what I am trying to get around to is at what point did you guys think about or have surgery recommended to you? Also in the time I have been in treatment for the headaches I have had terrible vivid dreams and haven't been able to sleep well but now it's getting worse. My pillow is making me uncomfortable, any recommendations on good pillows when you suffer from chiari neck pain?

0 likes, 5 replies

5 Replies

  • Apple62
    Apple62 ashley09624

    Posted

    I purchased a water pillow from my chiropractor years ago.  It was very comfortable.

    You can adjust the water level to your desired comfort.  I wish you the best on your

    Chiari Journey.

     

  • b2wc97455
    b2wc97455 ashley09624

    Posted

    Hi Ashley,

    I fully symphatize you on this, I have been through it a lot which I finally house bound as the more you leave it the worse it can be..once I have decompression all the sympton gone..I have my life back..SO THERE IS HOPE>.NO WORRY, MY SUGGESTION FOR MY EXPERIENCE DELAYING THE SURGERY..IT CAUSED BREAKING DOWN OF THE NERVES TISSUE/MUSSCLE, SO if you think that medication does not work, then the way to go is surgery..but dont wait too long though,make sure you get the best NS, such as Mr Flint in QE hospital Birmngham..get the doctor to refer you there..if you are in the UK..walton also great..but if you are in the US, I will go to Mayo Clinic..its worthwhile to choose the expertise because Cm is a rare condition and not so many health care has awareness on it....be positive..keep moving (gently)..THERE IS A LIGHT AT THE END OF THE TUNNEL...

    • ashley09624
      ashley09624 b2wc97455

      Posted

      I am in the US in Indiana. Just trying to take it day by day at this point still working 30 hours a week and keeping up with my toddler. Should be an interesting journey.
    • b2wc97455
      b2wc97455 ashley09624

      Posted

      Hi Ash,

      Well, just make sure you are listening to your body..I though 8 years ago I just feel too tired due to my work load, but as take it day by day..it getting worse..believe me..you do not want to experiencing what I have been through..if I only listen to my body 6 years..I will not be that bad..however its all gone..I could never get back to my previous job due to my capability seems less than I uedd to be..try to watch as well what supplements can help you redcuing the inlfamation and pressure (CFS) ..I wish you luck.for what ever you are planning to do..but operation is the way to go..before it get worse

  • ashley09624
    ashley09624

    Posted

    My headaches are continuing to worsen even with medication. Thursday can't come quick enough. Getting really tired of taking medication to try and make it through the day like a normal human being

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