November 4, 2016 came around and I was in the hospital at 5:30 a.m. getting prepared for my craniotomy to remove the AVM in the left temporal lobe of my brain. The surgery was scheduled to start at 7:30.
Needless to say I was very nervous, but having family around, I felt the need to keep my happy, positive attitude up to keep everyone else from being upset. In case something bad would happen I wanted to make sure the last thoughts of me were smiling and having a good time with everyone.
They got me moved into the operating room and they started to get things ready. The anesthesiologist explained what he would be doing and asked me if i had any anxiety. Of course I did. I knew they would be putting me to sleep for a bit to get me ready for the angiogram and craniotomy, but they would also be waking me up so they could test my speech. Having the AVM in the left temporal lobe area meant my speech could be affected and if they found any problems during surgery they would stop everything and instead of removing the AVM they would look into a type of radiation to slowly make the AVM close up and disolve.
If you have ever had any sort of awake surgery, you don’t usually remember much of it because of the drugs used. I don’t remember them talking to me during the surgery, but I have read some of the notes from the surgeon on my chart and I have a CD with images of the angiogram done during surgery to close off the AVM before it was removed. I only have four specific memories of the surgery itself:
- The first was hearing something like a saw or drill and having major pain in the left side of my head. I believe this was when they were opening my skull. I cried out and after a short time of that the surgeon asked me if I was in pain. I answered “Yes”. I heard him say let’s take a few minutes, which I assume they gave me some more medication to put me out a bit more.
- My second memory was feeling pain in my head. I’ve had an angiogram for the stent in my heart and I remember this same pain. I made some noise and the my surgeon calmed me down and told me this would be the last one and it wouldn’t hurt anymore.
- Memory number three was a little scary. I started feeling nauseous and I started to gag and cough like I was going to vomit. My surgeon asked me if I was feeling sick and I remember answering “Yes”. I started gagging more and, since my face was under one of those blue drapes they use in hospitals, I heard my surgeon telling others to check on my. The gagging and coughing caused pressure in my brain, which was now open because it was being worked on, and caused a bleed in a vein attached to the AVM and some swelling and protrusion of the brain. I remember a bit of concern in my surgeon’s voice that they needed to work on this.
- The last memory I have was being wheeled out of the operating room. I think I asked my surgeon if they got everything out OK. He told me they did.
When you watch Grey’s Anatomy, a brain surgery happens and everything is all right afterward. The patients are talking and happy like they had just taken a nap and were ready to head home later. In truth it was nothing like that. I was a bit confused, I had issues with words, I couldn’t read and I was pretty exhausted.
It’s been a full year now and I still think back to my hospital stay. It scares me a bit when I remember the surgery itself. I remember laying in the hospital bed later, wanting to say the things that used to come so easily to me, that were not there. I remember looking at my phone, at the cards from family, at the breakfast menu and not being able to make sense of any of the words on them. There was some panic in my part that I had made the worst choice ever because I was never going to be able to communicate again. Well, most of that has come back, although I still have some issues. Large groups are difficult for me, too much noise is overwhelming, people that talk to fast are so hard to follow and the phone is no longer my friend. Seizures have continued to plague me over the last months, but the hope is they will stop over time.
If anything, this has taught me to never take things for granted.