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
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
Teenager with Chiari and Syrinx
Submit Answer
A
A
Recent Activity
4760166_tn?1398360913
Blank
The_beat_goes_on commented on gjjl's status
Feb 07
16744917_tn?1451270439
Blank
gjjl have to have an MRI with a ... Comment
Feb 06
Avatar_universal
Blank
Georgiag111 commented on photo
Feb 06
Top Neurology Answerers
620923_tn?1452919248
Blank
selmaS
Allentown, PA
Avatar_m_tn
Blank
Ball123
7530528_tn?1428275172
Blank
AKC_75
TX
1306714_tn?1327260680
Blank
linnielou232
muskegon, MI
562511_tn?1285907760
Blank
Karen99
CA
Avatar_f_tn
Blank
lasel22
Chiari Malformation Community Resources
Top Neurology Answerers
620923_tn?1452919248
Blank
selmaS
Allentown, PA
Avatar_m_tn
Blank
Ball123
7530528_tn?1428275172
Blank
AKC_75
TX
1306714_tn?1327260680
Blank
linnielou232
muskegon, MI
562511_tn?1285907760
Blank
Karen99
CA
Avatar_f_tn
Blank
lasel22