Headache/sleep issues post ACM surgery in kids

[Guest guest]

Hi everyone

Thanks for sharing all your experiences. This is a really helpful website &

group.

Good luck to all those that posted upcoming surgeries!

Best wishes for a pain free Labor day!

My 4 year old has chiari/syrinx. He had decompression 3/07.

He is doing much better in many aspects but the sleep has gotten really bad

in the last 2 months, he won't go to bed and gets up and wanders around and

wants me to hold him. He is not very good about describing pain (and last

time his head hurt he ended up getting neurosurgery so we think the poor kid

is reluctant to tell us about head pain). He's exhausted but won't sleep.

Sometimes he falls asleep in the hallway and we carry him back to bed.

Can anyone tell me what their head or kid's head felt like 6 months after

surgery? And if sleep was uncomfortable? And anything that you might think

helped?

He's having an MRI in a few weeks to check the status of his syrinx and base

of the brain. HIs surgeon didn't do one right after surgery b/c he seemed to

be making such good progress that it wouldn't have changed any management

plans.

Thank you!!

AG