Another New Member

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

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Another New Member

Postby kater » Wed Jan 27, 2010 12:17 am

Hi, my name is Kate, and my son (9 in February) was diagnosed with a Chiari I malformation with syringomelia in October 2009. He had been having migraines, and in August he finally saw a neurologist, who thought an MRI was a good idea to rule out structural causes of a migraine. The MRI didn't show anything that was likely causing the migraines, but it did show Chiari I and two syringomelia(s). One is cervical and smaller (C6-C7) and the other is from T4/T5 to T12/L1. He has scoliosis showing on the MRI and his cerebellar tonsils are herniated. He does have some pain and headaches that might be due to the Chiari or syringomyelia.

We saw the neurosurgeon January 3 and he has recommended surgery. We are going back on the 3rd of February for a pre-operative visit. I'm mostly comfortable with the thought of him having surgery, but it is major surgery. No one wants to see someone they love go through something like this.

I wanted to introduce myself before I started asking questions. Thanks for being here.
Posts: 6
Joined: Wed Jan 20, 2010 12:12 am

Re: Another New Member

Postby lttutrow » Wed Jan 27, 2010 2:47 am

I'm sorry your son has been diagnosed, but glad you've found a nsg. you're comfortable with!! My son was 9 when he had surgery, he's 11 now. Welcome to the board!
Posts: 410
Joined: Fri May 02, 2008 10:16 pm

Re: Another New Member

Postby jupes » Wed Jan 27, 2010 10:22 am

Hello Kate and welcome! Pray all goes well for your son!
14 yr old DD with CM 0/SM and mild scoliosis.
"Trust in the Lord with all your heart and lean not on your own understanding" Proverbs 3:5
Posts: 262
Joined: Fri Jan 09, 2009 2:37 am

Re: Another New Member

Postby 3kidssane » Wed Jan 27, 2010 2:27 pm

Welcome, I hope you will be able to find the answers you are looking for. Our DD was DX in Sep. we have not been able to get her to a NS yet but hopfully soon. I'm glad you were able to find a good one. Best of luck to you and your family.
Mother of: DD,8 with Cm 1 protruding tonsils 10mm and SM with Syrinx from t5-t7, 4 mm in depth and 5 mm in width, DC'd 2x 6/2010, DS, 4 with enviromental allergies, food allergies and autism,DS 2, DS 5 months.
Posts: 36
Joined: Tue Dec 29, 2009 12:56 am

Re: Another New Member

Postby kater » Wed Jan 27, 2010 8:29 pm

Thank you all!

We might have been diagnosed a bit faster than most, because my son also has a bone marrow failure syndrome, so has other health issues which can make things move a little faster than might otherwise.

Posts: 6
Joined: Wed Jan 20, 2010 12:12 am

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