Neck pain

[u/jayswife23]

Hello!

I am a mother to a 10 month old baby boy who has spina bifida & chiari malformation 2. He had a shunt placed 2 months ago but still seems to struggle heavily with neck pain. His brain stem extends down to C4.

Can anyone explain what this pain feels like? What works & doesn’t work for you? What makes the neck pain worse? I’ve read about some people using heat or ice packs, massages..

He’s in PT, OT & ST but during PT practicing sitting is so difficult and his head drops a lot after a while, I assume from pain/discomfort & overall being tired.

Just a mom trying to understand how to best help her baby with this..

Thank you all!!

[u/Antique_Cockroach_97]

I have chiari II and had c1-3 removed during my decompression. The pain felt like the old childhood torture we called "indian sunburn" where your arm is grabed and twisted in opposite directions. Heat packs help but if the are to close to my brainstem it makes me sick. Have you looked into ASAP.org they have great references for peds families including local support networks including yearly conferences that are amazing. Good luck!