I suppose like any major undertaking, DBS (Deep Brain Stimulation) surgery involves many things you don’t know until you’re in the midst of it. And even if someone told you everything that would happen, you wouldn’t remember it all. So you fixate on certain parts and forget the rest. But, when I was anticipating DBS, I was right about one thing: I told myself it was going to be surreal, and it was.
I arrived at the hospital for Phase 1 of my surgery just before 6:00 AM with my husband and dad. I hadn’t been allowed to take my medication that morning, so I was a bit wobbly and used a wheelchair from the car into the hospital. We checked in, and at 6 o’clock on the dot we were taken upstairs to a waiting room outside the entry door of the surgical unit. My husband came with me, and my dad was given a beeper. I was shown to a curtained cubicle where I got into my hospital gown and the standard issue, no-slip, fuzzy socks, and up on the gurney. Then they brought me warm blankets. All the nurses were exceptionally proud of their warmed blankets, but really, they did feel good.
It was a busy morning for surgery, and soon my medical team was buzzing around. There was Nick, the resident, well on his way to being a top neurosurgeon. He was brisk and efficient, just like my surgeon, Dr.Z. I had met Dr. Z once before my surgery when I went in for a consult. He loves neurosurgery, and particularly loves doing DBS procedures. He wakes up every day excited to do them. This is a quality you want in your brain surgeon. And there was Ivan, the neurosurgical resident, a very kind and compassionate young man who called me “Boss.”
My relationship with Nick began when he had to shave my head. I knew it was coming, but it felt strange. I’d heard that some people only had a strip of their hair shaved off, while others had their entire head shaved, so I wasn’t sure which would be done to me. But by the end of Phase 2, I could see why they would just shave the entire head. My husband was there for the shaving, and I think it was harder on him than it was on me. I never saw my hair fall onto the floor, and they don’t give you a mirror, so all I felt was the cold air on my newly de-nuded scalp.
The next part was the numbing of my scalp so they could affix the halo. I had to sit up and sort of lean forward in the bed, which was a little uncomfortable, so I grabbed ahold of my husband’s hand to help me. This was the first occasion when they told me, “This is the worst part. It’s all easier after this.” It hurt like hell. Mostly, of course, because your skull is right underneath your scalp, so when they stuck the needles in, they hit bone right away. If that wasn’t bad enough, they had to do this a dozen or more times. I suppose you could say this is when my relationship with Ivan began. I spent the time calmly chanting “Oww!” repeatedly (not “Om”) as I squeezed my husband’s hand with one hand, and then Ivan offered me his hand so I could squeeze it with my other one.
When they had finally finished, Dr. Z appeared at the end of my bed with a large cardboard box labelled “Medtronic” (the manufacturer of my system), and asked if we were ready to get going. I said, “See you on the flip side!” to both my husband and my dad (whom they had paged just before my halo was put on), because I didn’t want them to see that part. Although it’s called a “halo,” it’s more hellish than angelic. It’s a big metal frame that holds your head steady, and bolts down to the operating table so you can’t move during the procedure.
Dr. Z opened the box, and for a few minutes the surgical team looked more like a NASCAR pit crew in action while they assembled the metal contraption. Meanwhile, the anesthesiologist spoke to me and said he would be giving me only pain meds, but not sedation, because they needed to be able to talk to me during the procedure, and I would need to respond to them. But after my pre-surgical MRI, when I was then taken to the operating room, they would be able to give me something for my anxiety, to help me relax.
They began attaching the halo, and proceeded to the juncture of the dreaded “ear bars.” Although I’d heard about these beforehand, I’d also heard that Dr. Z had been testing a halo without them. Unfortunately, I wasn’t part of this test trial. This became the second time that day that I was told, “This is the worst part.” The ear bars are little pieces of metal with plastic on the ends, which screw temporarily into each of a patient’s ear canals, to line up the halo and hold it in place while it is being attached. That also hurt like hell. This time, however, I had no hands to squeeze. But I made it through the increasing pressure in my ears as they cranked the four anchor screws into my skull, two in my forehead and two in the back of my head, that would hold the halo in place during the surgery. Finally they took out the ear bars. At one point, the numbing medication shot was wearing off in the left side of my forehead, and I could feel one of the anchor screws cranking down. It wasn’t so much painful as it was totally surreal: I could hear and feel a crunching as they reached bone. (They numbed me up again immediately after I told them that!)
I kept my eyes closed and practiced my meditation breathing from that point on. I had been working on using my breath to control my PD for nearly a year, and it became an increasing focus during my surgeries. (I need to thank Dr. Evian Gordon of Total Brain for his help on this front. Total Brain is a wellness company, but upon meeting him the previous spring, he had really got me thinking about breathing and using breath to control my health. His coaching and insight were extremely helpful to me.) The team finally got me locked in, and wheeled me down to MRI, where things were running late. Dr. Z does not like it when things run late. But we had no choice. We had to hang out in the hallway and await our turn in the “big magnet.” I was still doing my meditation breathing and felt remarkably calm. At one point Nick asked me how I was doing and I said, “I’m actually really impressed with myself for staying so calm.” He and Ivan laughed and said they were, too. Apparently, freaking out is kind of normal in neurology.
Finally I went into the MRI, with some discomfort, though they had instructed me to “relax” my neck and head, leaning back into the halo to let it support me. This was the third occasion when I was told it was the worst part, and it was almost over. Yeah. Relax. Sure, as you’re slid into a huge, coffin-link tube that clangs and buzzes loudly. Also, it’s very disconcerting when every time you try to move you hear a metal scraping or clanking sound. You don’t normally hear that sort of thing. Luckily that set of MRI pictures didn’t take very long, and we were fairly quickly back in the hallway, and then off to the operating room. Finally. When we arrived there, I was greeted by Kate, my OR nurse, who had more warm blankets for me. Then the anesthesiologist said hello to me and I replied, “When you can, I’ll take a little help relaxing now. I think the last hour of calm and breathing used up all of my remaining willpower.” Everyone laughed, but luckily, he was able to help, and we were quickly down to business. Next came the actual surgery.
To be continued...
Note:
I had a wonderful experience with my surgical team and at the hospital where I was treated. I have changed the names of my surgical team out of courtesy to them. But these wonderful doctors, nurses, and students were highly-trained and caring, and delivered me an amazing outcome.
You can find the rest of my Bionic Woman series here: