Teens with Chiari Malformation


I am Kirstie. I am 13, and I have Chiari Malformation. I plan to get surgery. I am very scared about how this will turn out. Some one Help. I am in need of a friend. I just want someone to talk to. Someone like me..A teen, or young adult.

Thanks for any help,


hi ...

sorry kiddo...i am old....lol...the big 50!!

just wanted to welcome you and happy you started your discussion...there are other young folks here....

i totally get where you are coming from when you wrote "I am in need of a friend." Hun, even us older folks feel like that too...you sound very bright and mature. I hope you can hook up with the younger people here.

get involved in discussions and always feel free to add your own , like you did...say if you have a specific question...just add a discussion...this way you can make more contacts as well as get input.

happy you found us!!!



Kirstie- My daughter is 14 and has it. I will ask her to join the sight, I’m sure you could both gain support from each other. I am recoving from the surgery at my moms, which is a different state so it will be around thanksgiving. Just know that each of us here understand and wish you the best. God Bless you!

hi missallen.....

that would be great if your daughter wishes to join...how is she doing????

Glad you are doing so well with your recovery...when do the staples come out???? i had my operation 3yrs ago..honestly, taking the staples out was quick and just weird feeling..no pain..just weird.

Kirstie..BTW..love your name!! please know you can ask anything and we all will do our best to help,ok?? Glad you are here.



Hi Kirstie! My daughter is 15 and just had decompression surgery for Chiari on November 10th, she was diagnosed in early August after years of headaches and then more recently numbness in her hands and blurry vision.

She would be more than happy to talk / e mail with you! She got home from the hospital yesterday and is doing well.

She doesnt have staples she has dissolvable stiches and they only shaved a little path of hair ~ I have posted a pic.

Please know there are a lot of people here for you and lots of info and resources too.

Lori- My daughter is doing pretty good at the moment. She has headaches and dizziness at times, but not severe symptoms at this time. Thanks for telling me about the staples coming out, that makes me feel better, they come out Thursday. - Melissa

old here too (43-lol) but will help if i can --u seem to have a few moms here with daughters so hopefully their girls can get online and connect with you...

funny i was just telling someone about the staples she asked if they hurt comming out i said no and i was totally freaked out too i thought for sure they were going to hurt like heck but no pain at all actually-- it was like lori said not painful just weird- actually when they got to like the base of the skull ones OMG did i get the chills-lol-


I'm 24 and just had surgery on Sept 30th. My surgery fixed everything. I felt amazing when I woke up in recovery, I knew things were different and I was able to lay in the sun and not feel like I was on fire.

The scariest thing about surgery for me was getting the IVs done.. not a fan of needles. This was my first major surgery other than getting my tonsils out. Just believe that surgery will make your life a million times better and it will. I was actually excited for my surgery because if it fixed just one symptoms I would be a very happy monkey. And for me, it fixed everything. If you need anything or to talk, let me know. You are not alone in this and there is always help here if you need it.