Hi, I'm new on here.  I'm trying to find answers for my daughter.  She is 9 and has a lot of health problems.  Her Syrinx is located from C3-T10.  It was fully filled, they did the decompression and it has thinned out, but it is still very long.  We were told that her Syrinx will never get any better than it is right now.  We have a Video Journey of her, and her caringbridge site.   I just don't know where to look for help for her.   She's been having pain in her back and legs.   Has had sensory loss.   But the pain seems to be daily since she was 2 years old.  7 years of Chronic pain.  She has scoliosis, too. 
Any ideas for who to get help from??? As for specialist???

http://www.caringbridge.org/visit/alexismeyer/journal
Alexis' Caringbridge Blog!

http://youtu.be/3Ct2J8u2b9g
Alexis' Video Journey through Chiari and Syringomyelia
Please help raise awareness for her, watch and feel free to share video to help others.