Hi and welcome to the Chiari forum.
First let me correct you, as this is not a disease, but a condition....it is a malformation of the skull and along with it can include other related conditions like sleep apnea and children seem to have more issues, so do test him for this asap. Next is Syringomyelia, tethered cord, POTS, ICP, CCI, ehlers-danlos.....and we are prone to auto immune conditions like Hashimoto's thyroitis, and GERD and refux, and connective tissue disorders....
Having the right Dr is key!
They will do all the right testing and know this, not everyone with Chiari are surgical candidates...as for pain meds....they tend to not work so taking them is not a good idea....what should be done is avoid activities that cause symptoms to flare....chiari symptoms cycle....so he will have good days and bad..this will constantly come and go....but by watching what he does a few days b4 a special outing or event he can help make sure he has a good day for that...or at least try....
Death is usually from a related condition....this is why I stress to have ALL related conditions ruled out b4 surgery is even considered...as these related conditions can affect how one feels and heals post op.
See the list of Drs and use it to research them to find the right Dr for him....keep in mind the list is not a referral nor an endorsement of those on it....educate yourself so after meeting a few Drs you will be able to choose the right one.
Lol ignore me asking how old he was! I forgot half way through typing that you had said :) thats a chiari thing!
There is no statistic on fatality. It can happen its not set in stone that it will happen... but chiari has been known to kill. And yes sleep apnea can be common amongst chiarians. And should always be tested for. As it is one of the leading causes in chiari deaths.
There is a list somewhere on this page of activities he should avoid to prevent making things any worse for himself.
And there are several other conditions he needs testing for also.
It is scary and I am sorry for all you loss. But please dont look at it as a death sentence for your grandson. Just because it can kill doesnt mean it will!
why do they not want to do surgery on him? How old is he? Doctors who arent familiar with the condition tend to brush it under a rug. He could do with seeing a chiari specialist.