Idiopathic Syringomyelia

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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Idiopathic Syringomyelia

Postby kellycotton1432 » Fri Feb 26, 2010 6:32 pm

Found out today that what my daughter has is idiopathic! we have an appointment with the NS on March 15th. Do any of you have children with this? It seems like everyone mostly has Chiari. I'd like to know what to expect next :( Her symptoms seem to be getting worse every day!

Thanks everyone!!
Kelly
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Re: Idiopathic Syringomyelia

Postby lsobczak » Fri Feb 26, 2010 8:31 pm

yes, i have 2 girls ages 4 and 6 who both have idopathic syrinxes. one has had surgery for a ss shunt placement and the other has not. what is your childs symptoms?
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Re: Idiopathic Syringomyelia

Postby kellycotton1432 » Fri Feb 26, 2010 9:23 pm

Headaches at least 2-3 times a day, neck pain, trouble breathing, lower legs go numb, loss of balance. Her syyrinx is from c4-c7. how big was the one your daughter had surgery for? Are their symptoms different than my DD's? Thanks for the reply :)
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Re: Idiopathic Syringomyelia

Postby lsobczak » Sat Feb 27, 2010 6:56 am

my older daughter's syrinx was T3-L1 and about 8mm in diameter at its biggest point. the shunt stopped the progression of symptoms but she still gets headaches, mild chronic back pain. my younger daughter's syrinx is T6-L1 on her last mri last year. i suspect it has got bigger becasue of her symptoms but even a small syrinx can have odd symptoms. my yonger daughter complains every day that her feet hurt, pins and needles and sometimes numbness. she get very tired and can't walk for long periods of time. she takes neurontin and that helps these symptoms. your child may have some of these symptoms plus more because the syrinx is in the cervical area. these kids can have neck pain, trouble swallowing, ect.. like you described. the neurologist may try some medications to alleviate some of the symptoms for your child and that could help. make a list of questions to bring with you to see the ns because it is so stressful the day of the appointment i have found this helps. i just go right down my list..
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