New Here

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

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New Here

Postby jandmmommy » Wed Aug 15, 2012 4:14 pm

Hello!

My 3.5 yr old son was just diagnosed with CM Type 1 and Tethered Spinal Cord. He has headaches approximately 1-2 times per week and randomly complains of leg pain. He does have fluid built up in his spinal cord. The surgeon is recommending surgery for both conditions. It is hard for me to wrap my head around putting him through the surgery and the recovery when he has mild symptoms. However, I do not want him to end up with permanent damage. Any thoughts/opinions are appreciated since this is all new to me. Thanks!
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Re: New Here

Postby lttutrow » Wed Aug 15, 2012 11:00 pm

I have two children who have had decompression surgeries. One has a syrinx, the other does not. Do you think you may feel more reassured with getting a second opinion?
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Re: New Here

Postby jandmmommy » Thu Aug 16, 2012 8:57 am

We do have a second opinion scheduled for next week.

How was the recovery for your children?
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Re: New Here

Postby lttutrow » Fri Aug 17, 2012 12:06 am

Mine were in the ICU for a day, then moved to a general room on the floor for 2-3 days. They both recovered well. My daughter was able to return to the school basketball team five weeks after her surgery :). For my kids, they have other conditions (EDS, pseudotumor cerebri) that complicate things for them, so that's given us some extra bumps in the road. Are there any questions I can help with?
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