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Recurrence?

Posted , 4 users are following.

Linleel
Linleel

Question: I am post decompression two years. Recently, I've had dizziness, stumbling, hypersensitivity to light and a tightness in the back of my head. Only a slight ache that I can treat with Tylenol. I wear an APAP device at night for Sleep Apnea. But I have the dizzy/stumbling during the day. I don't think my symptoms could be due to the strap, but who knows. I also now have TMJ which I think is due to the APAP pulling my jaw forward- which my sleep doctor doesn't believe. Anyway, anyone have these vague symptoms two years post surgery. I have MRI last Sept which showed everything was all good.  Today I could barely walk around the grocery store. 

0 likes, 7 replies

7 Replies

  • carolali
    carolali Linleel

    Posted

    Good morning, I can't really write a lot because I'm at work, but I'll give you some help.  I had all your symptoms you have now 3 years after my decompression in 2012.  My MRIs (6 hour one) and xrays said everything looked fine.  This past Nov. but the symptoms you have I had, but they got debilitating, such as passing out tripping, vomiting if I anything slightly touched my back of head, etc.  So I went to a Chiari Specialist Dr. Trumble and he said debilitating symptoms should be address with surgery and putting a titanium plate in to lift my brain back up to prevent crushing of the tonsils.  So Feb 16 this years I had the surgery and I am sooooooooooooo much better. I learned so much from the facebook group "chiari support group".  the help is wonderful and responses are immediate.   I'm here if you need me but the response might be a little delayed.  You can email me too which might be faster for me to get back with you.  (

    Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

  • leneta68422
    leneta68422 Linleel

    Posted

    hello,

    I'm am post decompression from 1/17/17. I have now been diagnosis with MS.

    So I study intensely and thru my immune therapy treatment I found the we "Chiari" folks still need to add to the brain functions to get back or close to normal.

    I have started taking b3,biotin, b7 Niacin, to combat dizziness, concentration, memory and eye problems I have from before surgery and since my MS diagnosis. I'm telling you I started the Biotin on a Sunday and by Wednesday I could see clearly. Also Turmeric w/ ginger powder helps with inflammatory pain.

    • gaynor_27718
      gaynor_27718 leneta68422

      Posted

      Hi there I was reading in one of your replies to another lady that you recommend b3 biotin for eyes and b7 for dizziness both of which I have problems with due to my chiari. I 2been to Holland and Barrett and surprisingly they dont stock any of these vitamins the b3 they have is for fatigue I would be grateful if you could let me know where I could buy them from. Many thanks Gaynor
  • gaynor_27718
    gaynor_27718 Linleel

    Posted

    Hi there i was reading in one of your replies to another lady that you recommend b3 biotin for eyes and b7 niatocin for dizziness both of which I have problems with due to my chiari. I have been to Holland and Barrett and surprisingly they dont stock any of these vitamins the br they have is for fatigue. Can you tell me where else i could try many thanks Gaynor
    • gaynor_27718
      gaynor_27718

      Posted

      Sorry meant to say the b3 they have is for fatigue.
  • leneta68422
    leneta68422 Linleel

    Posted

    Hello,

    I haven't been on in a while.

    Walmart has all the vitamins a-z and also Rite-Aid pharmacy in N.Y state. Or any herbal store like GNC.

    I am back to working my full time job that requires attention to detail. I am over joyed that I do not have to go on disability. Ill update you on any further info I get to help.

  • gaynor_27718
    gaynor_27718 Linleel

    Posted

    Thank you for your reply really glad to hear you have improved and good luck for the future and hope you have a happy healthy life xxx
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