Hi, my name is Julieanne72!

Julieanne72

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. 

Alex_Alumni

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

chiarieds

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