If we become concerned about you or anyone else while using one of our services, we will act in line with our safeguarding policy and procedures. This may involve sharing this information with relevant authorities to ensure we comply with our policies and legal obligations.

Find out how to let us know if you're concerned about another member's safety.
Please read our updated community house rules and community guidelines.

Hi, my name is Julieanne72!

Options
Julieanne72
Julieanne72 Community member Posts: 1 Listener
Hi I'm Julie, I have been suffering terribly with occipital headaches. Had an MRI and I have Chari Malformation type 1.just looking for more info. 

Comments

  • Biblioklept
    Biblioklept Community member Posts: 4,707 Disability Gamechanger
    Options
    I hope someone knows about chari malformation to help you and talk, sadly it isn't something I know anything about. Have they given you a plan to help with the headaches? <3
  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,562 Disability Gamechanger
    Options
    Hello @Julieanne72 and welcome to the community, thanks for sharing with us about your recent diagnosis. 

    I'm afraid it's not something I have experience of either, but I can recommend you visit our Sensory Impairments category if you'd like to connect with members there who might be going through similar experiences. 

    The brain and spine foundation have a booklet on Chiari Malformation, and a helpline which provides practical and emotional support if you need it.

    Let us know if we can support you further, and please do feel free to explore the community, join in and get to know members whenever you are ready :)

    Alex
    Online Community Coordinator
    Scope

    Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Want to give us feedback? Complete our feedback form now.
  • Biblioklept
    Biblioklept Community member Posts: 4,707 Disability Gamechanger
    Options
    I don't know if this is really rude so I am so sorry if it is but I searched the forum for chari malformation and seen that lots of people have it on here. I didn't spot any usernames I recognise except for @chiarieds so I'm tagging her in case she has any info she can share but if not or that's rude to do I'm really really sorry. 
  • chiarieds
    chiarieds Community member Posts: 16,127 Disability Gamechanger
    edited June 2022
    Options
    Thank you for the tag @Biblioklept (you can always tag me about either Ehlers-Danlos Syndrome or Chiari 1 Malformation) & hello & welcome @Julianne72.
    My family is affected by Chiari 1 Malformation as it can be associated with the genetic disorder Ehlers-Danlos Syndrome in some of us.
    The symptoms of Chiari 1 Malformation are many & varied, with headache being the main one (which I don't have). Sadly there's some misinformation in the Brain & Spine Foundation's booklet. The most up to date info on Chiari 1 Malformation I would say is on the American Syringomyelia & Chiari Alliance Project's website. Please see: https://asap.org/
    They also have videos of past year's conferences. Here's the one from 2020 which I 'virtually' attended: https://asap.org/conferences/virtual-conference/2020-conference-videos/
    Previous year's conferences here: https://asap.org/conferences/past-conference/    these are all for patients. Here's Dr Kula's presentation on Chiari headaches: https://youtu.be/jKg-IzlQPhs

Complete our feedback form and tell us how we can make the community better.