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Any advice

Posted , 3 users are following.

melanieheather
melanieheather

So I had the surgery almost a year ago they told me I was cured and that its psychological problems but I still have extremely decapitating bad headaches in the back of my head and I seem to form like lumps of fluid or something but when I put a cold pack on it it goes down still haven't been able to work because I have dizziness and I have convulsion like seizures or seizure-like convulsions and I start to burn up like I'm having hot flashes I'm only 39 years old but my body starts to go on fire and shakes uncontrollably and I have been to three neurologist and still haven't had an MRI done after my surgery so I don't know if anybody else has had the same symptoms like me but was wondering if anybody has any advice or clue as to what's happening

0 likes, 7 replies

7 Replies

  • htch
    htch melanieheather

    Posted

    Any NS who knows chiari would never claimed you at cured. I have been told surgery is only an attempt to halt progression on symptoms. There may be some improvement but they will not promise you this. Sounds like you have been treated terribly, can you insist on a referral back to NS who did the operation ?
    • melanieheather
      melanieheather htch

      Posted

      He sent me back to my union docs and the all say I have anxiety, depression ,and the surgery gave me ptsd from my childhood I'm looking into trying to get a new ns but through a union that's not easy
    • brendab
      brendab melanieheather

      Posted

      What about telling your insurance that you want a second opinion. You should always get a follow up MRI. And surgery is not a cure. Especially if you don't have a surgeon that doesn't have a lot of knowledge in Chiari. You said you get swelling in the area? Are you sure you don't have a leak? 😔 I'm sorry your going through this. My daughter has had 3 surgeries and still suffers from headaches. She now has a surgeon that has knowledge but "fixing" her will take time. The one thing hat does help my daughter is to take caffeine pills. You can buy them over the counter. They were recommended by her neurologist and it works for at least a bit when take. With Tylenol. The bills work much better compared to Let's say a cup of coffee. Maybe try that for now? If you get bad, I would go to the hospital and demand an MRI. Where are you located? Maybe that can help people help you find the right surgeon. I'm so sorry this doc is making you feel like your just nuts. So sad!
    • melanieheather
      melanieheather brendab

      Posted

      I'm from Chicago IL and I have asked for a mri they gave me a cat scan when 3 differ doctors said a cat scan doesn't pick up, what needs to be seen and as of the lumps I kow this it is liquid just by the way it's forming and I'm getting dizziness and fainting so im going back to my doctor to push for a mri now
    • brendab
      brendab melanieheather

      Posted

      Yes demand one. I know many people go to New York to see the specialist there. I can try to get info for you. Many people travel far to go to him. And often if you can get records, he will have a phone or video meeting with you to tell you what he recommends. I'm not sure of the fee for that or if there is even one. But if you want I can get info for you. People swear by him. Then if your insurance won't consider sending you there, do whatever you can. Maybe even a "go fund me"account. I hate when chiarians are not heard. My daughter suffers everyday so I get you. I'm praying for answers for you!
    • melanieheather
      melanieheather brendab

      Posted

      Thank you that info would be great I'm going to n.y. in may thank you so much....

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