Hello this is my first post here. If you read my profile I recently went the the ER here in east tx because my wife freaked out when i had one eye way more dialated than the other. I went to the hospital and they did a CT Scan. He asked me if i was on any medication and i told him i take adderal. Which i take because its just really hard to find energy or motivation to get up and do anything, even when taking it but it does give a initial burst of energy. He then ordered a CT scan and a specialist said on the report “Questionable cerebellar tonsillar ectopia” which from what i gather is C. Malformation. Ive put off going to a doctor because i got laid off and lost insurance. But the dreamy feeling pain in the base of my skull / weird squishy sound and pain when i look down or up too long have not gone away. I have been in a wreck where my head shattered the windshield but that was a long time ago. I also have memory problems, like forgetting where i put my keys ect, which seem to have progressed more in tge last year. My wife doesnt really understand and brushes it off. But its so frustrating dealing with all this, i feel like im literally going crazy. The Neuro Surgeon lady told me id have to find a primary care doctor, then get reffered. Im at the point where id almost rather just pretend it isnt happening then jump through hoops just to find out if it is in fact CM.
Ignorance is not bliss. You’re having neurological symptoms for a reason, you need to figure out a way to get this addressed before whatever it is comes to a head. There are things out there much worse then Chairi that will kill you if you ignore them.
azurelle
The ER last night did another CT Scan and verified it is cerebellar tonsillar ectopia. They reffered me to Handful of nuerologists. So now i know that thats what the issue is. These headaches are dibilitating.
Hey, hope this evenin is a lil’ bit better for ya. The euphoric, dreamy type feelings you’re having, sounds like auras. Which is what happens before you go into a seizure. Unfortunately the only way to find that out for sure is to have an EEG. Auras are a type a seizure themselves known as partial seizures. Depends on the neurologist. Is your neck grinding and popping when you roll your head like fully? Like around your shoulders.
Oh, I am an active epileptic. That’s how I know about this stuff. I’ve seen so any neurologist and neurosurgeons that have brushed me off, because there is nothing that can be done for me. I’ve tried over 20 different medications, which none worked. I’m on three now, and still have seizures. I also ha CM1, along with syringomyelia.
Ya it sounds my neck bones kind of pop and grind. I cant roll my neck like that without it hurting. But its not around my shouldars though. Its in my neck bones right under my skull. I went to my PCP today and she told me to head to Dallas UT Southwestern asap bc my symptoms are getting exponentially worse and increasing at a more rapid rate. She didnt refer me to a doctor but told me to go in to the ER there so i could see a on call neurologist asap. She called it “working the system”. So im heading to dallas in the mornibg with my wife.