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Chiari malformation type 1

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yvonne06468
yvonne06468

Hi everyone , I was diagnosed with Chiari malformation type 1 2 years ago I'm 36 and attend the queen Elizabeth hospital in Glasgow , I suffer terrible headaches and dizziness the list could go on , I went for fluid pressure monitoring last year not had any decompression surgery yet i go back to see neurologist in June and go for Mri scans . Feel like every time I go I tell them about how I'm feeling and how much pain I'm in they are not listening I and very worried about my condition and just want to know how down one else copes with it everyday and what's there check up plan with neurologist

0 likes, 22 replies

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  • helen11122
    helen11122 yvonne06468

    Posted

    Hi yvonne, it took 7yrs before I was diagnosed and that was by spinal consultant who found it when I had mri scan for my back and neck! I was nearly passing out when I got up on a morning with the pressure in my head. It was the neurosurgeon who recommended decompression surgery. Tell them you can't cope anymore and can anything be done. I think if they think you can cope they won't offer surgery. I was on all sorts of med and had nerve block injections and nothing helped. Hope you get some answers in June. X
  • clarey1
    clarey1 yvonne06468

    Posted

    Hi,

    I'm also in Glasgow! Before I say anything else I must say that my Neurosurgeon plus all the other staff involved in my surgery at the old Southern ( it'll always be the Southern to me!!) Were fantastic.

    But............

    The first neurologist I saw was appalling. He was an agency neurologist, brought in to clear patient lists at the weekends. I won't ask who you saw, but I will bet it was the same guy. He was beyond unhelpful,patronising, condescending, and made me take to my bed in despair!

    I finally got help and was taken seriously when I saw my surgeon privately at Ross Hall Hospital (in desperation!) And he put me on his NHS list for surgery within ten minutes!

    Are you able to do that?

    • yvonne06468
      yvonne06468 clarey1

      Posted

      Hi aw really how do I get on the private care for it ? Did u have to pay to go see him?
    • clarey1
      clarey1 yvonne06468

      Posted

      Hi,

      Yes, it's a private hospital so you need to pay to see him. To be honest, if I could have paid to have my operation privately then I would have but there are no facilities in Glasgow. Or Scotland! There's no way I was going to travel back from New York having just had brain surgery!!

  • clarey1
    clarey1 yvonne06468

    Posted

    ....incidentally, I finally had my surgery in December 2015 and am even worse now than before so don't take the option of surgery lightly!!
    • helen11122
      helen11122 clarey1

      Posted

      Oh no how are you worse clare. Must admit my head pain better but get dizzy and nausea and need med most days.
    • clarey1
      clarey1 helen11122

      Posted

      Hi,

      Headaches nearly as bad as before, numbness in legs now causing me to fall.........

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