Okay people, talk to me about seizures and chiari. My 4 year old son had one last week, his pedi referred to it as a absence seizure. He checked out, stopped breathing and his eyes crossed and then rolled back. The whole thing only lasted a couple seconds but it was scary considering everything else neurolgoical going on with him these days. He is unable to chew on his left side anymore and I was trying to get a video of him chewing a piece of gum and coincidentally, he had the seizure in the process and I was able to get the whole thing on camera. What kind of seizures are commonly seen with chiari, if any?
I showed his pedi the video and he had me take him to the ER to be admitted and run some test. They did a 30 minute EEG and it came back abnormal and said he "may" have seizure tendencies. The neurologist there at the hospital came to see him right before they took him down for the MRI of his spine so she was unable to do a full exam on him, there was just time to briefly talk to me but said she was going to come back the next day. Well, his MRI showed no syrinx or tethered cord which they were considered about with his legs and toes issues but it did show he has minimal CSF flow and needs to be decompressed. I didn't consent to the neurosurgeon doing it there at the hospital we were at so we were discharged and the neurologist said her office will be contacting me to work my son in within the next week. But in the mean time, you guys know the drill... I am curious to hear what all you know to hold me over.
Also, what complications could arise from him having minimal CSF flow? I know syrinx form in the spinal cord but is that something that forms quickly or overtime? What other risks and symptoms come with an obstructed CSF flow? We are not sure how long he has had minimal flow because he was originally scanned in February when we found out that he has chiari and the neurosurgeon he saw at the time insisted that his symptoms were not related to chiari so she wouldn't bump up the MRI of his spine and CSF flow (we were originally scheduled to wait a month and half before all this happened last week). We have seen three neurosurgeons within that practice and they all sadly seem to be pretty clueless as to what chaiari actually is and the symptoms that come along with it. One of them even tried to tell my my son's neck pain was not related. The struggle is real you guys, I had no idea it was this complicated to find somebody that is actually knowledgeable about chiari. Thankfully we are already on the books to see an actual chiari specialist at the end of the month so hopefully my sweet boy can have some relief soon.