My son has had chiari decompression surgery and has recently been diagnosed with ataxia. During the past week he has had an increase of symptoms and was in the hospital this past weekend. He is trembling more and has been complaining of his chest hurting, he doesn't want to do anything, he walks about 4 or 5 steps then has to lay down, extreme lethargy, AND OVERALL JUST DOESN'T LOOK GOOD. His current neuro-surg team and nuerologists have no idea of what is going on and all they seem to do is CT scans and mri's but can not find anything wrong. Our pediatrician has seen him and sees that it is getting worse but does not know what is causing all of this. He has been through so much already and we hate to see him suffering with what seems like no hope in sight for figuring this out. Does anyone have any clue as to what might be going on with him?
Hi...welcome to the neuro forum......I saw u also joined the chiari forum.I am the Chiari forum's community leader...and I know this is a diff thing to see....I know u want to fix ur son.
I understand ur son had the decompression surgery....may I ask by who and where? We have a chiari specialist list in the chiari forum and we like to addm drs to it.
Also more info on ur son's condition prior to the Decompression surgery.
DID he have a CSF blockage...did/does he have tethered cord?......did /does he have a syrinx? These r all related conditions to chiari.
I am sure ur son's dr's told u a the reality is that there is no cure for chiari...only treatments.I am sure ur son's drs will find what is causing the issues.Also may I ask how long since the surgery....from what others have said that have had the surgery it can be one to two yrs to heal.
I pray he feels better soon....and we see u in the chiari forum.
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