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12834615 tn?1427435356

Chiari Malformation

My son just told me today that my ten year old grandson has chiari malformation. I had never heard of it, but that doesn't mean anything because I never Barrett's espogulistus either till the doctor said I had it. Am really worried sick about him. The doctor acted like they couldn't do surgery on him right now. The doctor is putting on pain medicine, but that worries me to because I know you can get hooked on pain medicine. Is it a common thing to have sleep apnea with it? My heart and prayers go out to all of you that has lost their child or any loved one to this disease. I know how bad that hurts and you never get over it. I lost my sister and my oldest son in 2010. It wasn't to this disease. I almost lost my grandson's dad twice and I thought I was going to lose my granddaughter right after my son died. I know I've had a really hard time dealing with it. In fact, for a while I didn't think I was going to make it, so please believe my prayers are with all of you. I just want to know what are my grandson's chances of dying. I hope some one can help me.
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620923 tn?1452915648
COMMUNITY LEADER

  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.

Helpful - 0
2120085 tn?1344765910
Lol ignore me asking how old he was! I forgot half way through typing that you had said :) thats a chiari thing!
Helpful - 0
2120085 tn?1344765910
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.
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