My AVM Story – Part 9

Below is the recounting of the discovery, removal, rehabilitation, and survival of an arteriovenus malformation. To read from the beginning of the story, click here.

The Next 5-8 Days: November 18-23 or 25ish

This next week-ish is extremely fuzzy to me. I will tell the details I remember, but it will be very flow-of-consciousness. No pun intended.

This hemorrhage was significantly worse than the first. I was on narcotic pain medication for at least 5 days. I slept all the time.

I was woken up all the time for neuro checks. I hate neuro checks. Let me tell you about them.

“EMILY??? EMILY???” the nurse on duty loudly calls to wake me up.

Light sleeper here, please don’t yell.

“Emily, can you squeeze my fingers?”

Yes. Same as last hour.

“Emily, can you hold out your hands in front of you, palms up? Now close your eyes and keep them there.”

Yep, again. Same as last hour.

“Ok, bright light while I check your pupils.”

Get it over with so I can go back to sleep.

Must say, their flashlights needed new batteries. They weren’t too bright. Anyways, this happened every hour all day and night.

During this time I didn’t eat much or anything at all. I remember waking up and seeing 3 trays stacked on my counter. I hope Dan ate the meals, but I don’t know.

Settling in and Prep for Surgery

My parents got a room at the Renucci house connected to the hospital so they could be there all the time. I think, I don’t know for sure, that my parents and Dan are taking shifts staying with me.

The weird thing about cranial bleeds is that the blood has to drain somewhere.

Crazy, right? Seems logical, but it’s something I never thought about.

As the pain and headache began to lessen, the pain (aka pooled blood) moved down my spinal cord and nestled right around my tail bone. I can remember going down for one of the many CT scans and saying that I really felt fine, but my butt was SO SORE.

Ha! I didn’t know until later that the draining blood was causing that problem.

Now I wasn’t sleeping this whole time, but the drugs have taken their toll on my memory. I know during this time the doctors are trying to get the proper tests done so they can schedule the surgery.

Again, all of my vitals are stable and the hemorrhage stopped on it’s own. This is very good news. The AVM is in my right temporal lobe right up against my motor strip. They think it isn’t too big, but big enough that action must be taken for me to be able to lead a normal life.

New medical technology allows them to create a model of my brain so they can operate as precisely as possible. The items needed are a regular MRI and functional MRI.

Time for the next obstacle from the most unlikely source…

Next: My AVM Story – Part 10