8 yr old with Chiari
 

Hello, My son Stuart was dianosed last year with Chiari 1 after an MRI was taken after a first time seisure. The neurosurgeon (pediatric) refered us to a pediatric neurosurgeon here in Atlanta. We based the first visit on the first MRI. Stuart has shown no symptoms of Chiari. The doc. suggested Stuart have another MRI (more advanced) to see further down the spine to lock for any pockets( I think called syrinx) that can form on the spine and cause a lot of problems. The advanced MRI looked great. We could see the Chiari (very tight) but the spinal fluid was moving great, there were no syrinx formed, and no symptoms. The doc. gave his opinion that we hold off on the surgery because everything looked great and Stuart felt fine. One thing Stuart has had in the past was sleep apnea bu we think was corrected with tonsilectomy. The Doc suggested we have another sleep study in a few months and another MRI in a year. The sleep study came back fine and the MRI is scheduled for June. Last we Stuart had a fall at school sitting on a railing. He fell backward and hit his held. Hew was sore on the top of his head. He seemed fine, but the next day we got a call from school. He was complaining that his "hands were asleep) We rushed to the school to take him for a CT and xrays. That all came back fine. We made followup visit to the neurosergeon to be checked out Wednesday. The feeling came back first in his right hand and then his left. He is fine now. And I have calmed down some! I'm very worried. We think his MRI will be moved up. I know this was long but I wanted to give you the whole story. (by the way the seisure was not related to the chiari... the chiari was just an iccidental finding) Also, by the way the neuroligist daughter (13) has chiari and has had a sucessful surgery. Dana

Hi Dana and Welcome to NeuroTalk. Sorry about your son's dx. Of course, your'e worried... your'e a Mom and that's what we do best. My niece is an adult, but found out several yrs ago that she had Chiari Malformation.

She suffered from tremendous headaches that they DX'd as migraines. Well, several tests later.... Chiari. Her Dr wants to do surgery, but she isn't ready to go through it just yet.

I'm glad you found us and hope you find NT to be the informative, helpful and caring board that it is.. Welcome again.

Dana,

Hello and welcome to NeuroTalk. Great to see you have come to be with us. You will find a great number of caring, supporting members here willing to help each other as they can.

Again welcome, looking forward to seeing you around.

Darlene:hug:

Welcome to neuro talk!!!! Sorry that your family is having these issues, but you've come to a great place to seek support.

Here is a link to the ACM/SM boards.

I was diagnosed with ACM in 2000 and had ACM surgery and a laminectomy in June of 2000.

Hope you find the answers and help that you need.

God Bless you and Yours!!!!

Dawn

Hey, Dana. :)

Do you know for sure that the nsg you saw knows about Chiari? A lot of nsgs don't know enough about it to give informed opinions. It's very possible, even without syrinx and with free CSF circulation, that the sz could be related. I would seek another opinion just to be sure. Check out the following sites for referrals:

www.WACMA.com
www.ASAP.org
www.chiarione.org
www.conquerchiari.org


Good luck!

LIZARD :)