12 year old just diagnosed, HELP

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

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12 year old just diagnosed, HELP

Postby kykakimom » Sun Dec 30, 2007 5:55 pm

Hi;
I have a 12 year old daughter just diagnosed with a 28 degree scoliosis and SM. Her Orthopedic Doctor put her in a back brace and we saw a Neurosurgeon. They have conflicting advice.
I am a nurse, and I know it sounds awful, but I haven't researched SM until now. I wanted to see the Drs. first and have their viewpoint. BAD Idea. Since now I am even more confused.
I live in NVa, and I'm sure their are some fine Drs. in this area. Does anyone have any advice on how I start navigating finding out about this disorder? Finding Drs., etc..?
Also, I have 4 daughters, the twin of the 12 year old has an S curve, not as severe and her sister, but should I have an MRI on her to rule out SM? Also, her 4 year old sister has scoliosis found on her annual exam, but her pediatrician says not to worry. Any thoughts?
I know this is alot to ask in my first post. Any advice would be sincerely appreicated. Mary
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Postby brianfsmom » Sun Dec 30, 2007 9:07 pm

Hello, welcome, and sorry you had to find us.

First of all, has she had a full set of MRIs of her brain and spine? You need to find out the source of the SM if possible, as that would affect any treatment plan.

My son doesn't have scoliosis, so I can't really comment but others can. I know that SM often will produce an atypical curve, which can clue doctors into the fact that something else is going on.

A main cause of SM is chiari malformation, or else a tethered spinal cord. Please make sure you see a doctor who is familiar with all of these conditions for an accurate diagnosis. I'd definitely want to rule out SM in the other two girls with scoliosis. Ask the neurosurgeon about it; many pediatricians just don't know that much about the whole thing. My son was my pediatrician's first chiari patient, ever, and still is the only one as far as I know, although she had once has a patient with a syrinx. But this patient was just shunted, so our whole experience was new for her.

Also I am not sure of doctors in your area, the first to come to mind is Johns Hopkins and Dr. Carson, but I have no experience with him myself. We live close to New York and there were plenty of doctors there for us to get four opinions before surgery.

Best of luck to you - this is a great board for information. My son is also 12, by the way.
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welcome

Postby Sara » Tue Jan 01, 2008 10:14 am

Hi and welcome
First, does your daughter have SM? Has she had an MRI? There is a ped nsg in VA that one of our members has met, Dr Jane JR. You might try him.
If your daughter has SM, and other children have scoliosis, then it might be prudent to rule out Chiari and SM with an MRI. I would definetly request one.
I have identical twins, one has SM and Chiari and the other has intracranial hypertension, a related disorder.
let us know if we can answer any more questions.
Sara
Holly's mom
www.caringbridge.org/visit/hopeandholly
Sara
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