Aa
A
A
Close
Avatar universal
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?  
Cancel
3 Answers
3 Answers
Page 1 of 1
620923 tn?1452919248

  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"
Comment
Cancel
620923 tn?1452919248
Comment
Comment
Submit Comment
1306714 tn?1327260680
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.
Comment
Cancel
1306714 tn?1327260680
Comment
Comment
Submit Comment
620923 tn?1452919248

  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.
Comment
Cancel
620923 tn?1452919248
Comment
Comment
Submit Comment
Your Answer
Avatar universal
Answer
Know how to answer? Tap here to leave your answer...
Answer
Submit Answer
A
A
Recent Activity
Avatar n tn
Blank
cracker420 commented on When Your Cold Is Not...
Apr 30
620923 tn?1452919248
Blank
selmaS, and The_Marine_Corp_Brat commented on The_Marine_Corp_Brat's status
Apr 27
Avatar f tn
Blank
Ladytruth01 commented on When Your Cold Is Not...
Apr 24
Top Neurology Answerers
620923 tn?1452919248
Blank
selmaS
Allentown, PA
7530528 tn?1428275172
Blank
AKC_75
TX
1306714 tn?1327260680
Blank
linnielou232
muskegon, MI
Avatar f tn
Blank
KerriC1
Avatar f tn
Blank
lasel22
Avatar f tn
Blank
Mel5056
Holly, MI
Chiari Malformation Community Resources
Top Neurology Answerers
620923 tn?1452919248
Blank
selmaS
Allentown, PA
7530528 tn?1428275172
Blank
AKC_75
TX
1306714 tn?1327260680
Blank
linnielou232
muskegon, MI
Avatar f tn
Blank
KerriC1
Avatar f tn
Blank
lasel22
Avatar f tn
Blank
Mel5056
Holly, MI