My AVM Story – Part 21

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.

Recap

At this point in the story, I think there’s a need for a recap.

I had a hemorrhage in my brain which induced a horrific headache that eventually landed me in the hospital. The hemorrhage was an AVM rupturing in my brain. I had to stay in the hospital for weeks because I had a second bleed and was considered high risk. I’ve had the AVM removed through surgery, and now I’m working my way back to consciousness after being put into a medically induced coma after the surgery.

I’ve detailed some of the events that I remember during this gradually awakening process, the breathing tube coming out, the feeding tube going in, eyesight issues, and hallucinations (part 1 and part 2), but I haven’t spoke directly about my physical state. Let me explain my starting point after surgery, so you can fully grasp just how good God is and how far He has brought me.

Physical Condition Post-Surgery

First of all, I have a faint memory of a squeezing sensation on my right lower leg sometime during the five days I was in a coma. I remember thinking, “I must be alive!” because I could feel the rhythmic squeezing. As far as I can tell, this was my first memory after the surgery. Not having spent a lot of time in the hospital before, I thought the squeezing was the blood pressure cuff. It did seem odd that it was around my ankle, but who am I to tell the doctors where to read my blood pressure?

As I began to wake up, the doctors are nurses would come do the same type of neuro-checks they did on me pre-surgery. Or at least, I thought they were the same checks. They would grasp my hands and wrap my fingers around their fingers and tell me to squeeze as hard as I could.

I did, or thought I did, while half paying attention to what I was doing. I’ve done these checks a MILLION times. Why do they keep checking? I’m obviously fine. Then I’d doze back off to sleep.

The reason why they kept checking is that, obviously, I wasn’t fine. I was tremendously weakened on my right side due to the extended time in bed rest, at this point it’s pushing four weeks, and my left side was not responding at all.

It slowly began to dawn on me that the doctors were putting my hands and fingers into place. I wasn’t moving them myself.

They told me to squeeze my fingers, but there was no movement on my left hand.

One time, I finally looked down at my left hand, and Dr. Figueroa said, “Yes, look at them! Make them move!”

And I couldn’t.

I couldn’t even begin to know how to make them move. I was so confounded because I couldn’t make my left side move, but at the same time, I didn’t know how to make it move. How do you know how to blink? You don’t. You just do it involuntarily. I’m not saying that gross motor movement is an involuntary action, but formulating the command to lift your arm is not something you place conscious effort on. You can just think, “I’d like to reach out a pick up the glass on the table.” Then your arm picks up and grasps the glass. You don’t think about how to lift your arm.

Going back to the “blood pressure cuff,” that squeezing sensation was a cuff wrapped around the calves of both of my legs that contracted and relaxed to keep the blood flowing. It prevents blood clots for people who are lying in bed for an extended period of time. I absolutely 100% had no idea that I had a cuff on my left leg too.

After checking my hands to see if I could squeeze, Dr. Figueroa would go down to my feet to see if I could wiggle my toes or feel pressure or pain in my foot or leg. The only thing I could feel is a faint far, far away prick when they inflicted pain on my toes. It was almost as if it wasn’t me that felt the pain. It was so far away.

Dr. Figueroa sat with Dan and my parents to explain that there was no way to predict if I’d regain functioning on my left side, and it was an even bigger mystery how complete that functioning would be. The harsh news is this: This might be the new normal.

The risks of the surgery are great, but I couldn’t live a normal life with the AVM in my brain. It had to be removed and now I’m finding out what the consequences might be.

Next: My AVM Story – Part 22