Originally Posted by chiarichic

I was diagnosed with Chiari 1 in 2003 after 33 yrs of being treated like a psych patient so I COMPLETELY understand your frustration. My best advice is to find a Chiari specialist near you. You can visit any of the websites that provide info and support and they provide lists of drs and clinics with experience. I did finally get lucky and find a neurosurgeon who finally believed me but my neurologist was a woman and kept telling me that my symptoms were stress related. (after being the dr who ordered the MRI that detected the Chiari in the first place). I somehow summoned the strength that day to tell her I did not feel like she was doing an adequate job of addressing my symptoms and demanded that she work a little harder. I said "Pretend like I am your sister" and tell me what you would do then. I said the same thing to the surgeon, except I said "wife". It made a difference.

From your description of your symptoms, it sounds like your CSF flow may be blocked and causing more severe symptoms than the dr treating you is used to seeing. The seizures could be caused by that definitely. And my head also used to feel like the side and back was going to blow out. I always had an explosive type headache with coughing, sneezing, laughing really hard, and bowel movements would nearly make me faint. When the surgeon performed my decompression, he said there was blockage on my right side that was not showing on the MRI. It was caused by scar tissue from years of crowding and rubbing against my skull. No matter what drs say, unless they have personal experience with Chiari, there is no way they can know how debilitating it can be. I am here to support you and just hang in there.