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

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Postby lcolangelo » Tue Mar 16, 2010 5:25 pm

Hi everyone-- I have a 4 year old who had his second decompression in February-- he is still complaining of headaches-- and has just started complaining of a "shocking" sensation in his neck. He will grab the back of his head/neck and say "ow-- my head is shocking my neck!!' Has anyone else experienced this? I'm not sure if it's just still normal healing or something more serious. Any comments would be great! Thanks!
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Re: shocks

Postby Catherine » Tue Mar 16, 2010 7:37 pm

Hi, I would check with the NS about that. My 4yr old decompression 2/23 and is having all kinds of problems but not that one. She has tons of headaches, throwing up, blurred vision, and out of control anger. Her neck does hurt her, like a pulled muscle, but she does not describe it like shocking.

Good luck.

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Re: shocks

Postby memom » Tue Mar 16, 2010 9:01 pm


My daughter has "shock" sensations too. Hers started post decompression surgery in her arms, legs, neck, back and chest. They travel all over her body - she calls it "flashing pain". It has happened about 5 times since surgery (7/09). Dr. thinks it is "neurogenic pain" - nerve damage done prior to surgery.

My daughter had anger issues too. We have been seeing a therapist to help her learn to cope with pain. She got very depressed a few months after surgery but is better now. We removed as much stress as possible from her little life while she learns to handle all this. She is on the hospital home bound program at school. They send a teacher to our house 5 hours a week to keep her up with the class. Hopefully she will return to the class one day soon when she has a better handle on her own situation. We practice art and music therapy. This has helped her and us in many ways. She is calm and happy and does not have to worry about what to do when pain shows up. I hope this helps.

Mother of a beautiful 9 year old girl with CM 1.5, SM T 5-8 and Hypermobility. Decompressed 7/09.
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Re: shocks

Postby jupes » Wed Mar 17, 2010 11:22 am

Hi Lisa,

I would mention this to the NS. My DD has complained of these "shocking" or "shooting" like pains in her extremities and body at times too! She has SM and has never had surgery! Her NS feels it is probably neuropathic pain from the SM!

Hope you find answers and he feels better!
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
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