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Does anyone else have Chiari Malformation?

Heather87Heather87 Member Posts: 8 Listener
edited March 2019 in Disabled people
Hi all, I have been diagnosed with Chiari Malformation 1 about 2 years ago. I am not sure what I can expect as everything seems to be getting worse. I wasn't given any information and I have made best with what I have found on the internet which isn't always reliable. 

Replies

  • Sam_ScopeSam_Scope Member Posts: 7,732 Disability Gamechanger
    Hi @Heather87
    These members have mentioned Chiari Malformation before.

    @neilcosbey
    @Jude62
    @Ourjo
    @alexfoulkes89
    @hibby66
    @Kerrie1977

    Scope
    Senior online community officer
  • Antonia_ScopeAntonia_Scope Member Posts: 1,783 Pioneering
    Hi @Heather87 how are you doing today?

    You may find this booklet useful on Chiari Malformation, from the Brain & Spine Foundation. You can call their (free) helpline on 0808 808 1000. Helpline hours are Monday to Thursday: 9am to 4pm and Fridays: 9am to 1pm.
  • Beverley_ScopeBeverley_Scope Navigate Posts: 84 Pioneering
    Hi @Heather87

    It can be really difficult to find accurate information on the internet.

    The following website supports people living with Chiari Malformation and Syringomyelia, although you may need to get some security questions to access it. 

    http://www.annconroytrust.org/

    If you can't access the site, they have a twitter feed as follows and their number to ring is 0300 111 0004.

    http://https//twitter.com/annconroytrust?lang=en

    They may be able to give you more accurate information and the website may have a forum where you can talk to others.

    Good luck.
    Beverley

    Beverley Davies
    Parent Advisor
    Navigate
  • Heather87Heather87 Member Posts: 8 Listener
    Hi @Beverley_Scope

    Thank you for that information. I did not know about that site. I will check it out. 

    Kind regards

    Heather 
  • Heather87Heather87 Member Posts: 8 Listener
    Hi @Antonia_Scope,

    Thank you for that. I'm not doing too bad today apart from being in severe pain and the whole lower right side of my body is spasaming. (I think that's how it's spelt). The pain is getting worse and today I have had as much lidocaine plasters as I can use. 

    Kind regards

    Heather

  • alexCMalexCM Member Posts: 3 Listener
    Hi Heather I also have CM been diagnosed for just over a year. Its a horrible and confusing condition with very little useful help or information. There are many facebook groups, however, they tend to create a lot of anxiety as people with bad symptoms tend to post things you don't want to hear. However, CM gives a large range of symptoms and most people won't get most of them it depends on the structure of your brain. I own a research company and we have done a review of possible treatments, the standard NHS one doesn't have great results. The writer it due to get it back to us on Friday (we'd need to then review and amend) would you like a copy?
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