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Diagnosed for a year, recent worsening of symptoms .. advice?

Posted , 3 users are following.

emma2408
emma2408

I'm 19 and was diagnosed with chiari 1 a year ago after a year of complete numbness in my left arm. Other than that and pressure headaches when laughing etc I had no real problems so decided against surgery at that moment in time. Since then have been getting much more regular headaches, balance problems and problems swallowing. Most recently I have been collapsing and from others descriptions fitting when I collapse, has anyone had this with chiari? Also over what period of time did your symptoms get worse/ develop? 

Thank you

0 likes, 5 replies

5 Replies

  • jehan_91998
    jehan_91998 emma2408

    Posted

    Hi

    My daughter is 26 years old has suddenly lost her visual fields from her right and having severe headache weakness in her hand muscles can't even open the door difficulty in swallowing diagnosed with chairi 1 malformation but unable to find a doctor who really know what she is going through. I'm still searching

    Hope you get better and find a good doctor

    Best wishes

    • b2wc97455
      b2wc97455 jehan_91998

      Posted

      dEAR jEHAN, I SUPPOSE YOU ARE ABLE TO READ MY POT TO eMMA,  If you are in the UK you can contact Ann Conroy Trust, they will be able to find NS that on their list (THey are good) but if you could ask your daughter to ask the GP or your neurologist to be referred to him that woud be good. When I talked to their staff, he has got more than 95% success rate - that is something and he operate every Tuesday (once a week) do not leave it too long - as the condition can get worse. Good Luck
  • b2wc97455
    b2wc97455 emma2408

    Posted

    Dear Emma,

    I am sorry to read your post in regard to your symptom, I have been there just like you are now 2.5 years ago. I used to work as a medical rep.advicing health professional what to prescribe etc..etc..I also detest drugs and mostly surgery, I refused to have decompression despite being adviced that was the only miracle symptom reduction. So I went to spend lots of supplements only realised that supplements or healthy eating could not help denegeration - such as: hip replacement, Back operation or hernia, Chiari is like brain hernia - I thought I was going to get better if I start to live in a healthy life style, taking EPA/DHA/ALA you named it - but my symmptom getting worse, in a state that I was housebound (I could not even walk properly) and the aching was getting horendously unbearable- so i went back to my Neurogist to be referred to 2 NS (for second opinion) I was lucky that my 1st Neuro Surgeon agreed with my request - as I liked to be seen by Mr Flint - I knew fro this website that he was extremely fantastic, I also talk to the nurse in Ann Conroy Turst about him - there you go..I got decompression 5 months ago - the first 2 months post surgery was hell, but now, I am free from any drug, but I keep maintaining my healthy diet, mostly fish, eggs - to get protein for my brain, plenty of green juicing, I do not have any of the symptom anyomre, what I have now is back pain - because I had so many Lumber punctured (I guess) I am seeing Mr Flint again in February for Post surgery check up. - In my opinion I have done the right thing, I wish I listen there and then (2.5 yrs ago) rather wait and torturing myself, but hey..you can only learn.. just make sure you get the best one in your area, I have to travel 3-4 hours to Mr Flint- Are you in the UK?, if you are perhaps you would like to ask your gp to refer you to him, he is at QE Hospital. Be positive, do not do too much, take it easy, but HONESTLY DO NOT WORRY = THERE IS A LIGHT AT THE END OF THE TUNNEL - GOOD LUCK

    • emma2408
      emma2408 b2wc97455

      Posted

      Hi, I'm glad that you're treatment worked and you're feeling a bit better, I live in Scotland and I have quite a good surgeon who was willing to do surgery last year but I've only recently had an increase in symptoms that's made me feel worse and like maybe surgery should be an option

    • b2wc97455
      b2wc97455 emma2408

      Posted

      Well Emma, do it as ap, that is my opinion,maybe others have different suggestion, I must admitted the first 2 months post surgery was hard, however i AM THE LUCKY ONE, who had a successful one. It might help you to get magnesium oil to spray in your area where you feel pain (I.e:neck, shoulder) but do not got to chiro.
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