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Syringomyelia

My 13 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?

Our appointment with the neurosurgeon is Nov 11th.  Should she be seen sooner?  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.

Thank you.  

3 Responses
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Avatar universal
Dear Prough,

I imagine your daughter has been evaluated for a tethered cord?  In addition to a tumor and an Arnold-Chiari Malformation, this is one of the top fixable causes of a syrinx.  I just posted a longer note about this on Nikibug's more recent question (on ACM and syrinx), with some more information about tethered cord.  There are many papers coming out now with detailed research on how a syrinx forms, and there's much support to the idea that a syrinx often forms as a secondary process, due to abnormalities that interfere with normal CSF flow within the cord.  

Tethering, which can have many different causes, is one prime culprit - and the research I have read on these particluar patients tends to conclude by saying that their best results occur when they are able to fix the underlying cause, rather than just treating the syrinx itself.  However, I don't know how they are able to differentiate the secondary type of syrinx from the isolated, congenital type.  It seems, from reading the papers, that the researchers don't know this either - but have started to look extra hard for underlying causes, because they've been struck by how often a syrinx does in fact end up being the result of some other spinal abnormality.  

As I mentioned in my note to nikibug, I'm writing this from the perspective of a patient  - I'm 32, and have a tethered cord myself, as a result of scarring from surgery to remove a cauda equina tumor at age 29.  I have many of the symptoms of a syrinx in my upper body, and am due to have another MRI soon to check for this.  A tethered cord, by the way, can usually be seen on MRI if it's caused by a congenital problem (the cord ends up lying abnormally low, because it doesn't stretch as it should when the child grows).  My cord, however, is actually in the normal place, because it tethered as a result of surgery when I was already grown.

Good luck,
Kirsten
Helpful - 1
Avatar universal
Hi.  I too have a syrinx, due to Chiari. I have had decopression surgery, but that has not worked. I do know people that it has worked for though. It must be tough for you to see your daughter go through this, I know its ben hard for my family, and I`m 32!
  Wishing your family the best!
              Nikibug
Helpful - 1
Avatar universal
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. As for treatment, aLthough this is technically something that most neurosurgeons are familiar with, I would recommend a neurosurgeon who specializes in the spine at a major academic or medical center. If you are in the area, Dr. Ed BEnzel is a fantastic spine surgeon here at the clinic who would be happy to see your daughter. 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. For more info, try these sites:
Nat Institute of Neurological Disorders and Stroke at
www.ninds.nih.gov/health_and_medical/disorders/syringomyelia_short.htm

and

American Syringomyelia Alliance Project at
www.asap4sm.com
Good luck.
Helpful - 1

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