ok, so I recently went and talked to a neurosurgeon about possible surgery, to witch I was told that my Chiari is not severe enough for surgery..awesome right?? I have many symptoms that have been known to come with Chiari, blurred vision,ear ringing,dizzyness,light headed, room spinning, SEVERE neck pain, head aches, and have fallen twice in 6 months, almost fell a third time but caught myself and quickly sat down. what I don't understand is if my chiari is not severe would it really be causing all these symptoms?? am I going o have to live with these symptoms the rest of my life because my chiari is not severe enough for surgery?? (note: I am thankful surgery is not needed) or is there more to be discovered about my bad health? I use to have severe epilepsy I did have brain surgery for that and have been seizure free for 7 years, but because of my history with seizures this whole randomly losing my balance and falling over freaks me out. I am 23 years old I don't feel like I should have a problem with falling over :(
Is there anyone else helping you from a medical stand-point?
It sounds like you are describing a corticectomy(resection of a piece of your brain) to eliminate seizures. That means you have comparison MRIs. Has anyone seen if there is a change in your degree of cerebellar tonsillar ectopia? Have you seen your neurologist to confirm this isn't a recurrence of epilepsy?
I would suggest the next step would be follow-up with neurology, ideally the epileptologist with whom you worked for surgery(even if that means travel to them). If it was a pediatric neurologist, most places have adult neurologists who work with the epilepsy team.
There is also a risk of altered CSF dynamics with brain surgery(meaning the pressure in your head may be elevated or fluid may be building up at the surgical site).
That would also be best served by seeing the neurosurgeon who treated you initially.
Step back, look at everything, and assess the next step(most likely further neurological work-up, from what you are describing).
Hope these thoughts were helpful.