I will be 70 (yikes!) in a few weeks. I was told when I was 30 that I had a malformation, but not to worry about it. So I didn't. I woke up one morning in early February/2018 with horrible double vision. I live in Prescott, AZ, and there are ZERO neurologists up here that have any clue about cavernous malformations. I saw a neuro opthamologist. He dismissed me as a patient, saying he didn't know enough about my condition, and I was not to use his name if I went to the ER. Seriously? I finally found a wonderful neurologist up here, Dr Mackenzie, and he said to use his name if I go to the ER. BUT, he told me if it looked like I had had a major bleed, he would put me on a helicopter and send me on my way The Barrow Neurologic Institute in Phoenix. ( I have been to Barrow and saw Dr. Lawton. He told me I have 3 angiomas in the pons (left) area, and surgery is not an option. Too deep.)
Luckily, my symptoms are not too bad. Because of dizziness, I have not driven since February. I hate that part. I am pretty exhausted all of the time. My speech is slurred. I have difficulty swallowing. The double vision has pretty much resolved itself. No seizures. No nausea. I am in speech therapy. Right now we are working on swallowing. I am also in physical therapy working on strength and balance. Baby steps.
Luckily, I am retired and so is my husband. He is my full time chauffeur.