My 15 year old son has syrinx

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

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My 15 year old son has syrinx

Postby cstolzen » Thu Nov 18, 2010 10:56 am

Can any one help, we just found out that my son has a syrinx not sure where its at..he had to have a mri of his brain and we are still waiting for the results. He has headachs and is having pain in his back, shoulders and weakness in arms and legs. Has a hard time walking and using thing with his hand. He had wrestle for about seven years and now was told he can not. could this have happen because of this? what are the questions we should be asking and what can we except to be facing? We are in the dark about this.. I live in a small city and the pediatric dr said they can not deal with this here.
cstolzen
 
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Re: My 15 year old son has syrinx

Postby lttutrow » Thu Nov 18, 2010 11:35 am

I'd say the first step is to get to a good neurosurgeon. If you name the largest city you are closest to, someone else on the board will post some names of nsgs. who treat this in your area. Most nsgs. have done this surgery or have some level of experience with it, but you really want to consult with one who does several of these a year and has lots of experience.

The most common reason for a syrinx is a Chiari Malformation, and this will be able to be seen on the MRI. I'd encourage you to get a copy of his MRI's on CD from the imaging center they were done at. You can request a copy of the radiologist's dictation from your pediatrician. These will be requested by any nsg. that sees him anyway, but as a fellow Mom, I'd recommend you gather them now and as you go because chances are you'll be the one tracking them down later anyway. Also, there are sometimes things written in dictations with specialists that either I have forgotten they mentioned to me during the visit or they forgot to say during the visit and just captured in the dictation. It's also nice because if there are other specialists involved down the road, you've got these records to share with them, which they'll appreciate.

I have a 12 year old son and almost 14 year old girl. We too were told no contact sports like wrestling or football. If there's anything I can help with or if you just want to vent or chat, feel free to message me!
Praying,
Lori
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Re: My 15 year old son has syrinx

Postby cstolzen » Sat Nov 20, 2010 10:16 am

We seen his peds doctor, he does not have chiria. He have no reflex on right side and is weak on his left side. They have referred him to Columbus Ohio. The doctor said they their own test. Is this normal. He also has makes on his lower back that appeared before the pain started.
cstolzen
 
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