
Syringomyelia Support Group
Syringomyelia is a disorder in which a cyst or tubular cavity forms within the spinal cord. This cyst, called a syrinx, expands and elongates over time, destroying the center of the spinal cord resulting in pain, weakness, and stiffness in the back, shoulders, arms, or legs.

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My daughter has recently been diagnosed with SM. She has a syrinx at the C6 C7 vertebrae. She is being refered to Riley Children's Hospital in Indianapolis. I have read so many things. What are the chances of a normal life? I understand the pain symptoms may always be there but what about mobility? She is otherwise a very healthy 16 year old girl.
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I don`t know how to answer your questions,because of the age of your daughter and her physical fittness there is no telling what the future holds for her.Yes she might have pain the rest of her life but then agian she could be ok.Her syrnix is not as long as some others have and you didn`t say that she was diagnosed with Chiari one,so maybe all that she will have is the pain.At this point if she keeps her physical fittness up and takes care of herself and dosen`t particapate in any contact sports where there is any chance of an injury to her back then she might not progress any further than what she is now.
When I was diagnosed I was already in my 50`s and had some pryor back injuries[Trama to my spine].They think that trama contributed to my problems as I have 3 syrnix`s in my spinal cord.C-4 to C-7,T-5 to T-8,T-11 to L-3.The best thing she can do is to stay positive and keep fit and by all means have it monitored to make sure it is not getting bigger,by that I mean wider as well as longer.Mine started to cause my spinal cord to swell and they had to shunt it in order to relieve pressure because I was loosing muscle strength as well as having numbness in my hands and feet.
I hope this is what you are looking for,sorry that I could not give you a definite answer but it is a rare disorder and each person has different symptoms and prognocess.
If anyone has some words of wisdom or insight please let me know..
thank you
I am so happy that you guys have figured this out now rather than later. I went through 6 neurologists/neurosurgeons before they found that I had a syrinx and tethered cord about a year ago. As unfortunate and frustrating as the condition is, It's wonderful that it's been found now instead of years down the road when it could get bigger and give her nerve damage. Also, do you know what's caused it? It's important for a doctor to rule out any type of Chiari malformation, tethered spinal cord, IIH, etc.. If she has any questions about pain management feel free to ask me. Please tell her she will be in my thoughts.
~Best wishes, Em