To ask about chiari 1 malformation

[dray9925]

This morning my 2 year old was diagnosed with chiari 1
Obviously we are quite overwhelmed with all the information and we are being referred to specialists just wondered if anyone could direct me to reliable sources of information and maybe some sort of forum? (If that's allowed) just wanting to understand as much as I can what this means for him

The NHS has a clear page for patients with Chiari malformation:
www.nhs.uk/conditions/chiari-malformation/

I don't know any fora for patients and families but the Brain and Spine Foundation have a helpline you can call who would be able to put you in touch with anything they are aware of. Another source will be the specialist team, once you get to see them.
www.brainandspine.org.uk/our-publications/booklets/chiari-malformation/

Best wishes to you and your DC.

Hi OP, I have Chiari’s and was operated on for this and syringomyelia when I was 15. My mum tells people to avoid the online Facebook groups as a starter as they are often full of the worst most dramatic cases rather than positive and not what you need at the moment to support you.

Have a look at the Ann Conroy Trust - a Chiari’s charity (my phone keeps wanting to say Chianti’s).

From my own experience, I was operated on at 15 as my symptoms were quite severe and had been masked by being a very active teen. I live a full and active life but I do have some nerve damage. Most people who I know that have had it have not been operated on and have varying degrees of symptoms.

I hope that helps x