One of the great things about Boston is its place at the forefront of medical research and medical care—something you can take for granted until you need it. Some people don’t like being cared for at teaching hospitals or the idea of residents working on them. But I’ve always welcomed both in the context of PD, because we need more PD doctors. Neurology as a specialty has not kept pace with either the current or projected demand in the United States or around the world. The National Center for Health Workforce Analysis estimates that while the supply of U.S. neurologists is expected to grow by 11% between 2013 and 2025, demand will grow even more rapidly at 16%. The 2017 Alzheimer’s Association International Conference identified twenty states as “neurology deserts,” where neurological specialty care is particularly difficult to find.
Most people with PD have never even seen a neurologist, let alone a movement disorder specialist (MDS), the subspecialty that covers PD. And forget about nearby surgeons who specialize in DBS. But because I live in the Greater Boston area, I had a choice of doctors and surgeons trained in both MDS and DBS. So making more neurological subspecialists will continue to be a very good idea. And if looking in my brain helps, have at it!
Once we arrived in the OR, things moved fairly rapidly. I still kept my eyes mostly closed, but I was aware that there were more people around me. In addition to Dr. Z, his resident Nick, and his intern Ivan, there was a rep from Medtronic to help with testing the device, my anesthesiologist, his resident, and my nurse Katie, seven people in all, and it felt like other folks were there as well. It took some time for them to get ready, but since my eyes were closed, all my focus was on hearing the sounds of metal clanking and general background talk about the procedure. Although I was awake, I don’t remember everything, but here’s what I do remember.
They decided they were going to do the right side of my brain first, which impacts the left side of my body. The anesthesiologist leaned over me while they were getting ready and showed me a small roll of gauze covered with clean surgical tape. He said, “Most people clench their teeth when the surgeons drill through your skull, so you can bite on this.” I kind of laughed, as did he, but he added, “We could use something fancier, but this seems to work.” And it did work just fine. I didn’t feel anything when they made the incision, and even when they drilled, it didn’t hurt at all. It was just loud and I felt the vibrations, and I did clench my teeth on the roll of gauze. But it was over quickly, and then I could hear Dr. Z and Nick discussing how to place the leads.
One of my previous blogs (called The Waiting Game) described the detailed process of testing my system in the OR. Suffice it to say, it worked, which felt really good. But then they had to turn it off, since I didn’t have my batteries installed yet. Before closing me up, they did a CAT scan. The entire OR was a CAT scan machine, so all they had to do was move my gurney a few feet, drape my body with a lead blanket, and tell everybody to leave the room while they took their pictures. After Dr. Z looked at them and was happy that he had executed to plan, they closed me up. That part I remember distinctly. I could feel them stapling, but it didn’t hurt at all. Such a strange sensation: I could feel my skin being pulled closed and feel the pressure of the staples entering, but I didn’t feel any pain or discomfort at all.
In that same earlier blog I also discussed my experience in the Recovery room, where a nurse named Julie took excellent care of me, but I didn’t talk about one important thing. About twenty minutes after I arrived in the Recovery room, they came for me to have another MRI. Although a second, post-surgical MRI is part of the expected process, they usually do it the next day, before a patient is released. But they wanted to do my MRI before they took my halo off, because the CAT scan didn’t match the pre-surgical MRI the way they wanted it to, and they were fairly certain there was a problem with the first MRI. Just in case they needed to go back in, they wanted to keep the halo in place. So, back I went, halo still attached, for new pictures. While I normally tolerate MRIs pretty well, it had been a very long day at this point. It was then almost 2 pm, and I was on the edge of losing it by the time they got to the end of the thirty or so minutes of picture-taking. Plus, the pain drugs were wearing off, and I had just had holes drilled into my skull, so the sounds were especially bothersome. That really was the last “worst part” I had to survive.
Then it was back to the recovery room, to Julie, graham crackers, and ginger ale—the best meal I'd had in ages. Or at least in the previous 36 hours when I'd either been too nervous to eat, or medically mandated to avoid food.
You can find the rest of my Bionic Woman series here:
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