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Decision on whether to get decompression surgery

Posted , 5 users are following.

Shanks
Shanks

I'm 17 years old and was diagnosed with Chiari 1 two and a half years ago. My neurologist told me it was benine and had nothing to do with my symptoms and sent me away. Recently met a new neurologist who referred me to a neurosurgeon who today said the pressure on my spine needs to be fixed asap, meaning surgery. I have every symptom there is so suffer constantly. Can anyone tell me anything about their experience with it? Being so young it's a big step to get brain surgery but I feel its the best decision to make, I just want to be fully informed before telling the doctor I'm 100% about the surgery. Any advice is greatly appreciated.

1 like, 20 replies

20 Replies

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  • Shanks
    Shanks

    Posted

    I'm unable to stand or sit for long periods, I can't walk for long periods or my legs give up on me, weakness in two legs and arms, numbness down the left side (one side of my leg is totally numb and its spreading to the right leg), I can't write as my hands seize up and become very painful. Very painful headaches, I can't turn my head sideways without a blinding headache, chronic dizziness, blurry vision sometimes. Often my hands seize up for long periods meaning they're just like a claw. As of yesterday I don't think I'm able to complete my summer exams because I can't write or type on a laptop. It sounds very sad when I say my goal for the year was to complete a half marathon for a suicide charity which I've given up on because I've progressively gotten worse, now my goal is to be able to stand for long enough and be physically well enough to go to the debs with my boyfriend of three years who has stuck through thick and thin with me with all this stuff going on. Its good to know there are others out there like me since I've never met anyone else suffering like me.
    • helen11122
      helen11122 Shanks

      Posted

      Let's hope having operation gives you a better quality of life. And hopefully prevent your condition getting any worse. Good that you have support too. X
    • julia79586
      julia79586 Shanks

      Posted

      Ok Shanks, maybe it's time to re-evaluate short term goals. All your symptoms are fairly typical but it sounds like you could be bordering on depression. It's very important to keep yourself as well as possible leading up to the operation. It would be such a shame not to finish those exams. I'd make that my 'now' goal by doing everything you can to keep those hands moving so that you can type and sit the exams you've worked so hard for. Your gp should be able to get you night splints made for your hands and daytime phisio will keep the joints flexible. Try to have a really healthy diet. I know I sound like an old mother hen but unless you keep those muscles working they will pack up, eat protein  and excercise gently. If you look after yourself now then you can do the charity marathon later. Its harsh reality but if I'd followed my own advice then I wouldn't be this crippled old 60 year old in 100 year old body. Don't allow this Chiari to dictate the rest of your life, you will be well again but you have to believe in your own strength and ability because, armed with that you can beat anything.
  • Shanks
    Shanks

    Posted

    I'm unable to stand or sit for long periods, I can't walk for long periods or my legs give up on me, weakness in two legs and arms, numbness down the left side (one side of my leg is totally numb and its spreading to the right leg), I can't write as my hands seize up and become very painful. Very painful headaches, I can't turn my head sideways without a blinding headache, chronic dizziness, blurry vision sometimes. Often my hands seize up for long periods meaning they're just like a claw. As of yesterday I don't think I'm able to complete my summer exams because I can't write or type on a laptop. It sounds very sad when I say my goal for the year was to complete a half marathon for a suicide charity which I've given up on because I've progressively gotten worse, now my goal is to be able to stand for long enough and be physically well enough to go to the debs with my boyfriend of three years who has stuck through thick and thin with me with all this stuff going on. Its good to know there are others out there like me since I've never met anyone else suffering like me.
    • whodatbritchick
      whodatbritchick Shanks

      Posted

      My daughter had the same symptoms me it got worse over a period of a month. She had surgery it took three months to heal she still has numbness and gets headaches from time to time. But her quality of life is so much better and she can do things now. Talk to a neurosurgeon is my advice to you and maybe get a second opinion just to be sure. This site also helps. Take care
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