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My 16 year old daughter has been diagnosed with syringomyelia
07-01-2012, 05:24 PM
Post: #1
My 16 year old daughter has been diagnosed with syringomyelia
My 16 year old daughter has been diagnosed with syringomyelia - her MRI's show no Chiari malformation, she has had no spinal injury and no evidence of any tumor. She is having tremendous back pain on the left side only. Other symptons are stiffness in left arm/left leg. She also suffers with bad headaches. We have pulled her from soccer and other sports.

Her sryinx is from T6-T10. Other than Chiari or injury, what could be the cause?

Are all neurosurgeons familiar with this disorder? Do we continue to look for the cause or do we focus on treating the sryinx? Should we be limiting her activities? What should we do to releive the pain?

I am just looking for some guidance and appreciate any suggestions.
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07-01-2012, 05:28 PM
Post: #2
RE: My 16 year old daughter has been diagnosed with syringomyelia
Tumor is an important thing to look for in a child with a syrinx and can often be evaluated with MRI as was done in your daughter's case. Aside from Chiari and trauma, congenital is the other big cause which means she may have just been born with it. With time, it enlarged and is now producing symptoms of back pain and weakness/stiffness.

If tumor has been effectively ruled out, then it's time to focus on treatment especially because your daughter is having pain and neurological deficits. You did the right thing by pulling her from activities such as contact sports which could exacerbate the problem. Let common sense and her symptoms dictate what she can do. Stay away from heavy lifting or any strenuous activity and talk to your pediatrician about medications for pain control until you can get in to see your surgeon. I can imagine how painful this must be as her pain fibers are being irritated in the spinal cord by the syrinx. Try NSAIDs like motrin or maybe some tylenol. If things like that don't work, she may need small amount of narcotics like percocet or tylenol 3 temporarily. But this should be evaluated by her pediatrician and considered in light of her clinical history and exam.

If you are not in the area, then keep your appointment. If your daughter's symptoms progress/ continue to get worse, get in to see the surgeon sooner. Having said that, the stiffness on the left is a little concerning to me and I would actually favor calling the surgeon's office to see if there was a way to get in sooner even if she didn't cont to get worse.
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