Figured I should have a post somewhere documenting things. Not sure what I’m going to do with this information yet, but I’ll get there.
Back when I was 19 (2009) I was driving to College, about an hour away from my parents house where I was living. About the time I got into town, my left eye suddenly went completely black and my right eye registered the world as having been flipped 90 degrees. I got to the side of the road and ended up late to class, but I did regain correct vision in both eyes after a few minutes. I had a stupidly bad headache for the rest of the day, but didn’t think too much more on it. It was midterms season and I couldn’t be missing class.
June 18, 2020 I had the worst headache in my life. Bad. Bad bad bad. But, I knew if I went into the ER the doc/nurses there would look at me, go ‘congrats, it’s a migraine, go home and sleep it off, here’s a pill:. So I didn’t. The headache had built up over the course of the day. My eyes felt like the would come out of my skull. A gold piano wire hooked up to electricity ran from my left eye to the back of my head. Everything was way too bright, way too hot. The most comfort I found was curling around icepacks while hiding in the walk in closet on the floor. The bed, air movement from the fan, noise was all to much. Now I have a persistent itchy heat on the underside of the top of my skull, and if I stand up for more than 3 minutes, I can count my heartbeat in my head. I’m physically wiped out and nauseated by 7:30 pm.
I had a persistent headache after that migraine, but not as bad for the rest of the week. Two weeks ago, I called my doc and told her what was up. She got me some meds to calm the headache then scheduled an MRI. I got really luck. Someone canceled their MRI on July 6, otherwise, I would have been seen in September.
On Thursday July 9, the day before SO and my 9 year anniversary, we got the call. I have an AVM that shows evidence of having hemorrhaged before and am being scheduled to talk with a neurovascular surgeon. That prior hemorrhage was most likely either the day my left eye went blind momentarily or that migraine in June.
I don’t know where this is going. I don’t know how much it’s going to cost in the end, if I’ll be able to see or draw after the surgery due to its location, if there is a surgery.
For now, nothing that leads to high blood pressure. No swimming alone or driving for fear of seizures. Nothing that could cause another hemorrhage.
I have spent the better part of three days researching everything I can on what an AVM, what type of surgeries are involved, the myriad of tests I have to go through before surgery happens. I’ve been watching YouTube videos on survivors, doctors, craniotomies. I’ve dived Ito estimated costs. I will be calling insurance on Monday when they are open to make sure I’m being seen by in network doctors. I’ve seen estimates as low as 3k for the one craniotomy, not including the week long stay in a neurologic intensive care ward, the legion and months of therapy, the angiograms before the surgery. I saw some bill estimates when all was said and done racking up to $2 million. I’m terrified of dying and terrified of being in medical debt so deep I’d not see the end of it before I die. I’m really hoping the insurance I have is as good as it says it is. I’m also hoping the docs I end up with who are in network are actually competent. Apparently most neurosurgeons only see one or two AVM cases a year. At an estimate of 250,000 people in the US having an AVM, 10 percent finding they have it, and 1 percent hemorrhaging from it…I’m scared of having a doc who I can afford, mutilating me into a vegetable, being blind, or unable to read and write (the AVM is on my vision and language comprehension center in the occipital lobe apparently).
There’s a risk of hemorrhage before the surgery and during it…
So yeah… that’s my life at the moment.
Current bill to date:
Doc visit- $168 (primary care)
Migraine medication $20 – after insurance
MRI: $810 up front with insurance.