Teenager with Chiari and Syrinx

My son has just recently been diagnosed.  We found both because of slight scholiosis.  We are going for further MRIs at the end of the month with surgery in the near future.   This is all new to us..  we are dealing with Childrens Hospital in Birmingham AL.  Has anyone had any experience with him?  Any comments for us as a family dealing with this?  

[selmaS]

  Hi and welcome to the Chiari forum.

So sorry ur DS is having to deal with this, and I know this will be a frustrating journey for u all....know u r not alone, all the members here are available for support and info.

I am not sure about the Hospital u r going to, but we do have a list of Drs here that the members have been to and liked..the list is not a referral, it is only meant to help u start ur research of drs.

http://www.medhelp.org/health_pages/Neurological%20Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186

Since ur DS has slight scoliosis also have them check him for tethered cord.....and Ehlers-Danlos...and a few other Chiari related conditions...sleep apnea, disk issues, ICP.....

  U want to be sure the Dr u see is a true Chiari specialist.

  "selma"

[linnielou232]

I'm so sorry your found out this about your son.  All of us on this forum know what you are going through right now.  Just wanted to let you know your not alone.  You have reached the most difficutlt issue is finding out what is wrong with your DS.  Letting you know you are in my chiarian prayer's and hope you find the answer's you are seeking.

[selmaS]

  Hi Just wondering how ur DS is doing?....and if u found a Dr yet that is well inform with  Chiari.....

I know this is a lot to deal with and this time of year there is so much going on, know we are here if u need to talk.