Does anyone else have Chiari Malformation? — Scope | Disability forum
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Does anyone else have Chiari Malformation?

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Heather87
Heather87 Community member Posts: 8 Listener
edited March 2019 in Disability rights and campaigning
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. 
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  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,671 Disability Gamechanger
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    Hi @Heather87
    These members have mentioned Chiari Malformation before.

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

    Scope
    Senior online community officer
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  • Antonia_Alumni
    Antonia_Alumni Scope alumni Posts: 1,780 Pioneering
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    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.
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  • Beverley_Scope
    Beverley_Scope Scope Posts: 84 Pioneering
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    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
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  • Heather87
    Heather87 Community member Posts: 8 Listener
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    Hi @Beverley_Scope, 

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

    Kind regards

    Heather 
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  • Heather87
    Heather87 Community member Posts: 8 Listener
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    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

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  • alexCM
    alexCM Community member Posts: 3 Listener
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    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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