So after years of being misdiagnosed following a grand mal seizure with visual aura, which doctors told me was due to low potassium/lack of sleep/stress… I was diagnosed with an occipital AVM. I have vision loss bilateral but worse in my right eye, the bottom right corner of my vision is completely gone and my parents never believed me. My old neuro told me it was probably due to lack of oxygen during my seizure.
My current neurologist was reluctant to even do an MRI just treated me for migraines with meds without running any tests… I’m a nurse so I was able to fight for myself with much medical knowledge (thank god). I originally went to ER in March with worst migraine ever, they found something but wouldn’t tell me what. They kept asking if I ever had a traumatic brain injury, which I never have. Found the AVM through MRI/MRA, was sent to neurosurgeon. Ran Angio and it was confirmed, and confirmed it had bled already. Hemorrhagic AVM which my doctor is convinced it happened when I had my seizure, in 2014. It’s now 2018. My AVM was embolized in July with onyx, 90% successful. My options were GK which takes years to work and might not be effective (no thanks), resection with craniotomy (not if you have to shave my long hair), or just watch it. Since it’s bled already apparently my chances are higher of another one. So I chose the cure-all option of removing it by surgery.
Anyway. I have a craniotomy resection scheduled in two weeks and I’m currently freaking out. My anxiety is awful about this. I want to get second and third opinions but I feel like it’s too late. I have pre admission testing tomorrow.
Has anyone else had an occipital AVM?? I’m scared my vision is going to be worse??? Also originally my dr said it would be a “complicated resection” because it’s just off the midline of my brain, before the
Embolization, which was the original treatment option I chose due to it being less invasive. It was only 90% successful… but now he’s saying it’ll be an easy resection. Is that because it’s my only option??? I’m horrified to wake up blind or paralyzed or just never wake up. Hoping someone can give me insight.