chiari , I need to ask some questions

Discussion in 'Fibromyalgia Main Forum' started by tansy, May 16, 2003.

  1. tansy

    tansy New Member

    For the last 22 years I've been aware of problems that I realise might be related to chiari.

    I've been looking up sites but unable to find a message board anything like this. Chat rooms not really suitable for me because my information processing and typing takes too long.

    Is there anyone who knows enough for me to discuss some of my ideas over this or know of a really good but easy message board I can use?

    I know I have CFS and all the immmune etc indicatons and spinal problems but the info I've seen so far fills in some of the gaps.

    I really would appreciate any advice, help, or ideas.

    Cheers

    Tansy
  2. tansy

    tansy New Member

    Any one out there with some info or experiences.
  3. Applyn59

    Applyn59 New Member

    Hi Tansy,

    I have heard of this condition and did a little research on it, but that is as far as I got. I just went to the Yahoo Group site for you and did a search. Go to
    yahoo and find their group page. Type in chiari and there are a few groups of people who have this condition. Look at them and subscribe to the ones
    you feel most comfortable with. You can have the messages go to your email address individually or you can get a digest of batches of emails or you can choose to have no email and read the email on the groups website page like we do here.
    Good luck. Hope this helps you.
    Lynn
  4. tansy

    tansy New Member

    Thanks.

    About to change ISP so will go through yahoo after this.

    e-mails will certainly be easier for me to cope with than chat rooms etc.

    Looks relevant to some past history, consequences of oral surgery where I was pulled about a great deal; op took nearly 3 hours. Told I had chemical menengitis afterwards, may well have done, but much of aftermath continued and so similar to Chiari.

    Nature of reaction to lumber puncture really rang bells.

    Chirpractor adjusted cervical area of spine a few times, had real problems. He said I should never have that area manipulated again.

    Physiotherapists very concerned at what they are finding, keep asking why it's not been properly investigated.

    Need to know, but have learnt all the stated precautions the hard way.

    Know my problems are not all CFS/FM, and if there is chiari it's not all down to that either.

    Cheers

    Tansy
  5. Applyn59

    Applyn59 New Member

    I was at Fibrohugs the other day and saw info
    on Chiari if you are still interested. Just thought
    I would let you know.
    Lynn
  6. garyandkim

    garyandkim New Member

    had Chari Malformation. It is at the base of the scull. I believe in MD. I think Johns Hopkins. Hope she sees this post. She had the surgery and did fond that some of her symtoms got better.She still has FMS but, the horrendous head aches are mostly gone for her. They have a doctor there that does these and she sent him her MRI's to this doctor and then he said he would see her.

    Maybe you can call them. Good luck, Kim and Gary
  7. tansy

    tansy New Member

    Hi Lynn, Gary and Kim,

    I'm persuing two avenues at the moment and this is one of them so thanks for the info.

    The NHS in the UK is going from bad to worse. Chat with GP, who's equally frustrated, indicated our alreay bad (officially failing) local hospital has made yet further changes making it all even more difficult. She can no longer access a whole lot of tests, specialist clinics etc. The specialists they have to go through will not take either of the issues that need investigating seriously, so it's all going to be very physically and financially challenging. I do have a brother who's in nuclear medicine though so can access some scans through him.

    At the moment I'm hopping mad but once I get past that will start planning my next moves.

    Cheers

    Tansy
    [This Message was Edited on 06/04/2003]