Chiari Online Support Group

Hello.. I guess

I recently decided to find some sort of support. Mainly because there is nobody close to me with any sort of Chiari. I feel like I’m not welcome in any of the groups I’ve tried. With that being said, hello I’m Leigha. I have chiari type one and I am 14 years old. I was diagnosed about 2 years ago . I’m getting surgery in about 6 months. Is there anyone that could help me understand how it feels after surgery? I know it’s different for everyone, but I’ve only heard my surgeon talk about it and honesty I’m not sure if she exactly knows how it would feel.

Hey! I haven’t had surgery and only recently was diagnosed. Do you have Facebook? There are several active Chiari facebook groups that many have discussed their surgeries or their teens/kids surgeries. You may get some responses on this website but it may be much slower to get one.

I had the surgery when I was 15 it was intense I was able to go home 2 weeks after my surgery. I missed a lot of school I felt if I tried to do to much after I would get reallu hot and have to stop. Also I got very worn out fast and easly. If you have anything else let me know.