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.
Hi Leigha, I’m just coming across your post—I know it’s been awhile but I am curious about how you are doing. My 11 yo daughter was diagnosed just before her 11th birthday. I’m sure you two could relate to one another. She’s very mature for her age and I think she would be interested in hearing about surgery and life in general from someone closer to her age. I pray that you are doing well and living a joyful life! If you see this, please give us an update 
Best wishes 