Below is another part of My AVM Story: the recounting of the discovery, removal, rehabilitation, and survival of an arteriovenus malformation. To read from the beginning of the story, click here.
A Scary Night
Now this wasn’t a scary time for me, like before, God had me wrapped in a blanket of peace. I was more in a state of calm confusion, wondering what Dan and the doctor were so concerned with.
As I’ve mentioned before, the red light on my finger was my beacon in the night to get Dan’s attention if I needed something. At this point, Dan stays up with me all night, and my mom and/or dad stay with me all day so Dan could sleep.
I am not able to roll myself over or speak to ask for meds. So when I want something, I flag Dan down and we go through a mixture of stellar sign language and gestures to figure out what I wanted.
Mostly it was a guessing game on his part: “Are you in pain? Do you want to be turned over? Do you have to go to the bathroom? Are you cold? Do you need the nurse?”
This night, I wanted something, I don’t remember what, so I wave my right hand.
Dan, “Honey, I’m right here.”
I’m laying on my side, and I can’t see him. I’m not sure what he means, “I’m right here.” So I wave my hand again.
Dan, “Emily, I’m right here. Can you see me?”
Right were? I can’t see you anywhere!
Dan, “Emily, look at me.”
I think I’ve figured out that he is on my left side, but I am turned on my right side. I might have turned my head or not at all. I’m not sure. I can’t roll myself over so I just lay there.
Dan goes for the nurse.
Dan explains to the nurse our waving procedure, and that this time, I didn’t look at him when he is sitting right next to me. I really couldn’t see him, and I didn’t really understand the big deal of the situation.
The neuro-doctor on staff for the night comes into my room. He is a young little pipsqueak fresh out of med school, couldn’t be more than a few years older than me. He discusses with the nurse and Dan then comes over to check me out.
Stuffed-shirt-doctor to Dan: “Can she speak?”
Dan: “She can respond to yes/no questions.”
I could nod, shake my head, or give hand motions, like a thumbs up, but that was the extent of my communicating skills at that time.
Stuffed-shirt-doctor: “Can you hear me, Emily?”
Me: Nod head.
Stuffed-shirt-doctor: “I’m going to test your vision. Follow the light with your eyes only. Don’t move your head.”
I really tried to follow the light, and at times, I thought I was doing it. I mean, I was having neuro checks all the time before surgery and acing them, what was different this time?
Nurse: “Wow, that’s a really bright light.”
Side note: they use the oldest flashlights with the weakest batteries to do their neuro-checks. They always warm you, “bright light.” But it’s never bright.
Stuffed-shirt-doctor: “Yeah, I made sure to get a bright pen light. It’s the brightest available.”
Right then and there I decided I didn’t like him. He was more concerned with the wattage on his pen light then the condition of my brain.
Slight exaggeration, but I did decide I didn’t like him them. Arrogant snot.
Stuffed-shirt-doctor: “It would appear she has an oral fixation on the right. It may or may not go away with time. We’ll just have to keep watching it.”
This means that the brain was irritated or swollen from surgery, and it was not allowing my eyes to look to the left.
Weird, huh? I could compensate by turning my head, but looking just with the eyes didn’t work.
There are many risks to having an AVM removed from the brain, some physically debilitation and some mentally debilitating. The concerning part for Dan and my parents is that there is no guarantee if I will regain full functioning and when that will happen. It really is a wait-and-see game as the patient recovers from the surgery.
Next: My AVM Story – Part 21