[Destinystar]

My son who will be 11 next month was just dx. with a small syrinx inside of his spinal cord at C-2. He walks up on his toes, cannot walk a straight line, cannot balance self with 2 feet on the ground, has spacisity behind his heels and shortened tendons, sinus arrhythmia, fatigue, extreme difficulty writing, cannot touch his nose with his finger, brief periods of dropping his head and not responding etc. Does anyone know anything about this or about the surgical procedures to shrink the syrinx? He has seen a pediatric neurologist ( a woman I work with) and is being refered to a neurosurgeon. Any info. about this rare disorder would be greatly appreciated.

Shelly

[gwenith]

There are two websites within the resouces thread covering this problem

http://www.asap4sm.com/

and

http://www.thejns-net.org/spine/issu...0920093_r.html

hope these help.

[Destinystar]

I just want to say thank you and to tell you how much I appreciated the information that you passed on. I just visited one site and was able to download some info. This will be useful when I fax the insurance company to request authorization for ongoing visits to my sons neurologist. Being that this is a rare disorder it helps to have info to share with others so they can understand what is happening with my son. I have visited a lot of sights and I am so happy to see that this one has someone here like you that can offer people the kind of help they really need. Your info has been a comfort to me because it seemed like there was no one I could turn for information. Again thank you for taking your time to do this for me. God Bless.

Shelly

Originally Posted by gwenith

There are two websites within the resouces thread covering this problem

http://www.asap4sm.com/

and

http://www.thejns-net.org/spine/issu...0920093_r.html

hope these help.

[gwenith]

No problems - I have actually nursed someone with late stage syringomyelia so I was at least a little aware of the condition - It is rare and I am glad to be of help.