Although it’s already tomorrow, I haven’t gone to sleep yet and have been reflecting on so much that happened with this surgery. It’s quite difficult to sleep on steroids and immon a high dose to keep the swelling down.
An awake craniotomy was never on my bucketlist, but has now been checked off. Being awake during surgery was wild. Hearing the doctor telling the anesthesiologist
to look out for you movements as he stimulated your brain and telling them the plan of pouring cold water on my brain as step one during a seizure and step 2 is them giving me a certain anti-seizure drug if the water doesn’t work right away, and the final step
being putting me completely under with a breathing tube immediately and no longer being able to finish the surgery. Dr. Berger spoke to me throughout the surgery. He asked what I was feeling and where I felt it. Others in the room would say “her arm is twitching” after he said “stimulating now, tell me what you see” and twice during that time I had a focal seizure in my left arm and hand. One that made my left arm from the elbow shake inconceivably and listening to him say “dousing with water” to which my arm stopped moving instantly. And another focal seizure which felt like a horrible cramp in my left hand that I tried to
Meditate and breath through until I heard him say “dousing with water” again and realizing that must have been a seizure which stopped instantly after he used the water (which I could not feel). He continued stimulating until he didn’t feel he could go any further and had me move my hand, arm, and foot several times to make sure there wasn’t too much weakness many times. I even felt tingling on the left side of my face which was of no concern to him. After he was finished I heard him telling a resident how to screw my head back together and heard the tool thatvwas being used, but felt nothing as the skull and brain have no nerves and he numbed my scalp with a local shot given before stitching which I could feel ever so slightly and he stitched me up or someone else did as I couldn’t see above my head. I was nailed to the bed. With one nail in my forehead even. And several on the sides.
Last night a drainage tube was removed and thatvwas by far the most uncomfortable thing I have experienced this week.
I love this hospital, the food has been great as has been taking a week’s break from my raw vegan food diet, which I’ll be back to come Monday, my first full day at home. I’m actually craving it as real food isn’t as satisfying.
My surgeon, Dr. Berger touched my knee and gave it a slight squeeze prior to surgery while telling me “everything will be fine, this is a routine surgery for me” which gave me do much peace prior to surgery. Sometimes it’s the little things that make it feel so much better.
I received a clinical trial that the FDA has just released to all brain surgeons that is a drink you take 3 hours prior to surgery, Zach and Sean made it for me by adding water and shaking it up. It lights up tumors under a special light, which luckily didn’t quite work on mine as lower grades don’t light up as well. So mine still appears to be low grade, which I find out for sure in 2 weeks. The benefit to me of this dye was that I got to be a vampire and hadvtobavoidcall light in the hospital. Lights are always off in my room and there are warning signs around saying no lights. When I want to walk the hallway, the lights are turned off for me and when taken into MRI, I am completely covered and wheeled away. I actually enjoyed being in the dark and knowing that lights would burn my skin kept me secluded in the dark as well as in the hospital for an extra day.
In a few hours I will be checking out and I can’t wait to go see more sights in SF, but I won’t be riding bikes across the Golden Gate Bridge tomorrow, I’ll be taking it much easier and enjoying my family time.
I’ll probably have to fix this in the morning when I get a chance, but I’m sure you get it.