still having headaches

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

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still having headaches

Postby lcolangelo » Wed Oct 28, 2009 8:12 am

My 3 year old son had a chiari decompression in August-- he had been having headaches brought on by coughing and straining etc. We caught it early because my 10 year old has had 4 decompressions so I guess we knew what symptoms to look for. After an infection in his incision sight, he has been doing pretty well up until now. He came down with the same horrible cough etc. that everyone has got, and again is complaining about pain in the back of his head-- right after coughing. I e-mailed the PA in my neurosurgeons office and she thought it's just his way of expressing any pain. I don't think so-- he's very articulate-- and is only complainig only after these coughing episodes. Has anyone had chiari symptoms return so quickly after a surgery'-- or not go away at all? I'm hoping it passes-- but can't help worry that there is still compression back there. Any thoughts would be great!
lcolangelo
 
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Re: still having headaches

Postby Janice » Wed Oct 28, 2009 10:59 am

I'm so sorry to hear your baby boy is struggling so soon after surgery. Did you say it's the same surgeon who decompressed your 10 yr old 4 times? That doesn't sound usual. Have you ever considered seeking a second opinion from an expert CM/SM NS? It's really not common for a child to need decompression 4 times. If you are currently working w/an expert, it might be time to change. I hope both your boys need no additional decompression surgeries. It's often best to know how many decompressions a doctor has completed prior to undergoing surgery, or treatment, on your child.

Then again, there's also the knowledge that surgery isn't a cure. CM/SM are life-long disorders. Surgery is a way to try and slow progression and/or lessen symptoms.

Take care, I hope you find answers for your sweet baby boy. (((((Prayers & Hugs)))))
GOD Bless!
Janice

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4

http://janice-mylifewithsm.blogspot.com/ (Copy & Paste link into your browser)
Janice
 
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Re: still having headaches

Postby lcolangelo » Thu Oct 29, 2009 12:06 pm

Actually we are working with an expert-- Dr. Menezes in Iowa. He's said to be one of the best in the country. People come from all over the wolrd to see him. It is uncommon to need 4 decompressions- but my daughter was very young with her first-- 2 1/2 . For some reason, she keeps regrowing the boney areas. It usually takes about 1 1/2 years, and she has problems again. They say it is vey unusual-- but can happen. Once she hits puberty they think she'll be ok. We're just hoping the same doesn't happen for my son! Thanks for your prayers!!!
lcolangelo
 
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