On Nov. 2nd 2020, I had open brain surgery. I was in the hospital for two weeks and rehab for two weeks. It was torture; I just wanted to go home, but rehab was necessary because I had some functional delays in my left hand and leg.
I was considered an emergency case, so with or without the pandemic occurring I was having surgery.
The night before surgery was a long one. I finally had a sweet roommate (Hi, Beth!) and we both didn’t sleep much at night. I fell asleep Sunday night after midnight for a few hours before I was taken to my pre-surgery MRI at 2 AM. There was nice lady who had to shave parts of my hair off so she could attach sticky buttons to my head for the surgeon to follow like a map during the operation. I was a zombie at this point, but after the MRI, they took me back to my room. I believe I was scheduled to be in pre-op at 6:30 and they woke me at 6 to get ready.
I was in surgery for 14 hours which caused my face to swell up like a balloon a week later… I’ll spare you the pictures of that.
Most of the ICU I genuinely don’t remember at all so some of the gaps were filled in by family. I also learned that each side of our brain controls the opposite side. So because I had surgery on the right, my left side was affected and impaired. My mom said I wasn’t making a ton of sense at first and when I did speak, it was only to answer a question directly asked to me. I learned too it was taking me at least 20 seconds to come up with a response.
After a little less than a week in the ICU I went to the step down unit. This is where I started to come to. I wanted to leave the hospital and recover at home. I truly had no idea how long recovery would take. I also really noticed how weak my left leg was. I was very unbalanced and wobbly on my feet.
Initially, my team thought I had a stroke due to weakness on my left side so I had a spinal tap which thankfully I barely remember due to good ‘ole morphine. My left arm, leg and fingers were much weaker than my right side.
This was a particularly miserable time because I was weak, could barely feed myself, but wanted to leave the hospital desperately. Plus, being in the hospital while COVID was going on was particularly challenging due to the daily changing visitor policy.
Because of the weakness on my left side, I left the hospital to end up at rehab for 11 days. Just as I ended rehab, many things started to improve. I was really ready to go home at this point and continued to not sleep through the night because of all the noises and stress from the hospital. The only consolation in rehab was that I didn’t have any IVs.
My new years resolution is to not be negative; but during this time in the hospital and recovery, complaining was all I had and I was very frustrated that I couldn’t sleep.
My mom came to visit everyday in the hospital and rehab and stayed in a hotel about five minutes away from my hospital. I was still very disoriented, but it was so nice to have company. Because of COVID, she was only allowed to stay for an hour each day, but they usually let her stay a little longer. The timing of my surgery was perfect because shortly after I was released, the hospital stopped allowing visitors altogether.
When I got home, I started having outpatient therapists come to the house for speech, occupational and physical therapies. I continued outpatient therapy at a local hospital and graduated from there. I have to say though most of the issues I was having with strength are almost fully resolved. The biggest issue I had was short-term memory loss, but that was a problem before anyway!
There is a tiny piece of a different AVM remaining in my brain which should be radiated away, and I have one more angiogram to confirm that the original is healing well.
I appreciate all your prayers and outreach of support through the last couple months. I am beyond thrilled it’s behind me.