Someone commented that I only write about my life before and after my Deep Brain Stimulation (DBS) surgery for Parkinson’s Disease (PD), not about the actual day of surgery. It’s just that my life with PD is much more interesting to me before and after that day. But for those of you who are curious, here’s my story.
Sacramento, California. May 2005. I checked in to the admissions department at the Kaiser Permanente Hospital in Sacramento for surgery for PD the next day. I provided them with a copy of Five Wishes® which is a living will that addressed my medical wishes and also my personal, emotional and spiritual needs. In case I died during surgery, I made an elaborate list of songs to be played at my funeral, and preferably played by an accordionist. Heck, my husband Tom probably would neither find the Five Wishes document, nor locate these songs and an accordionist to play them. I was determined to be a surgery survivor and get my musical affairs in order.
After having a surprisingly restful night’s sleep, early the next morning I was wheeled from my hospital room to another room for the pre-surgery procedures. The neurosurgeon, Dr. Conrad Pappas, shaved my entire head. He was regarded as being an accomplished neurosurgeon, but I suspected, a lousy hairdresser.
Dr. Pappas injected me with a mild local anesthesia and sedation. Then using screws and pins, he attached the stereotactic frame to my skull. I looked like I had a metal birdcage on my head. I was surprised to experience only mild discomfort similar to going to the dentist for a filling.
When my blood pressure seemed lower than usual, he assumed that I had a calm and carefree temperament. I explained that I was more like an air traffic controller with a composed exterior, but with turbulent insides.
With my head frame attached, Dr. Pappas and the nurse practitioner wheeled me over to a small brick building outside the main hospital to have a one-hour magnetic resonance imaging (MRI). The MRI was used to map my brain and locate the site to be stimulated. In my case, the location was the subthalamus nucleus.
Having had two MRIs of my brain in the past, I felt like an old pro, but still claustrophobic in that cylinder shaped tube. The top of the tube must have been two inches from my nose. I marveled that big football players could fit into such tiny quarters. It sounded like there were construction workers with loud jackhammers under my head. I distracted myself by converting the sounds of the MRI to musical notes. I visualized being the director of the MRI orchestra.
After the MRI, I was wheeled back to a waiting area for a pre-surgery visit (metal bird cage and all) in the hospital. I warned Tom that I didn’t want any grimacing and thankfully he was grinning ear to ear instead. Waiting next to Tom were my cousin, Mary, who was a nurse from Kansas City, and a new Sacramento friend, Joel, who experienced the same surgery the previous year at the same hospital with the same surgical team. I was overwhelmed by their show of support.
After being wheeled into the operating room, the first thing on the agenda was the music for the eight-hour surgery. Picking the music was about the only perk I got as a patient undergoing DBS. In the operating room, the surgical staff and I listened to my music blaring on the overhead speaker–my four CDs of carefully chosen accordion music and one Van Morrison CD, on loan from my new friend Joel for good luck. The accordion music tranquilized me. It probably acted as a stimulant for the surgical team.
Then the catheter, which is a tube that drained and collected my urine, was inserted. This was the most painful part of the surgery for me. The anesthesiologist introduced himself as “Killian, like the beer,” teased me when describing the catheter. “It hurts like a red-hot poker,” he said. Somebody should have told me about that red-hot poker before surgery. After three medical staff attempted to insert the catheter, finally it was placed correctly. Being a modest person, I was embarrassed when sprawled out on the surgery table. I asked Killian to cover me with the sheet. Throughout the day, I obsessed about the catheter, wondering if it was inserted incorrectly. I needed to pee and worried about urinating on the surgical team and table. When someone later held up a giant urine-filled Listerine bottle (presumably filled with my warm, golden urine), I was relieved to realize that the catheter was indeed working.
Two dime-sized holes were drilled into the top of my skull. “Take that flight-for-life helicopter off my head. Do you think my brain is a landing pad?” That is what I wanted to shout (but didn’t) during the drilling. I assumed that the volume of the accordion bellow-shaking version of “Malaguena” on the CD would obscure the loudness of the drilling. I was wrong.
Dr. Pappas implanted two electrodes the size and texture of 15-inch strands of cooked spaghetti. Then Dr. Wheelock asked me to perform specific muscle movements such as opening and closing my fingers, moving my arms and legs and showing how well my tremor was being suppressed.
During the surgery, I tracked and participated in the operating room chatter. I focused on remembering the name of each member of the surgical team. Surreal discussions ranged from topics such as the Sacramento Kings basketball team, to the Sacramento River Cats baseball team, to New York and Colorado, to accordion music and presumably some DBS talk as well.
During the surgery, my emotions seesawed. One moment, I was exuberant when thinking of the possibility of leading a PD-free life. The next moment, I contemplated dark thoughts about circling the drain, and I wondered if Tom would get my long list of accordion songs right for my memorial service.
Thirty minutes after the surgery was over, I was comfortably residing in the intensive care unit. I was sitting up in the hospital bed reading a true crime book, when Tom, Mary and Joel arrived. My face was slightly bruised from swelling. I was embarrassed by my bald drilled head, which was covered by a skullcap. It was as though nothing much happened, as though I never had surgery.
I looked for the microlesion effect and found it. My PD motor symptoms temporarily disappeared for a couple of days due to DBS. I walked around the hospital floor as though I never had PD. Then the microlesion effect left, and my PD symptoms returned in its place.
I certainly didn’t feel sick enough to be in the intensive care unit for two days after surgery. However, there was no room available on the regular hospital floors, so there I stayed, sat up in bed, devoured books, ate vegetarian meals and strolled the hospital floors.
Twelve days after the first surgery, I returned to the hospital for the remaining part of the surgery, which was to implant the neurostimulator. The surgery lasted two and a half hours. I was fully doused with general anesthesia and couldn’t remember a thing.
When I awoke, I smelled spicy Mexican food, heard Mexican music and the sounds of a party going on in the recovery room. Were they celebrating Cinco de Mayo? I tried to capture the staff’s attention, but it was difficult when they were partying.
I was alarmed to discover my left hand and arm were in a posturing, turned inward position. I was adamant that I suffered from a stroke during surgery. I demanded to see Dr. Pappas. Tom appeared in his place and reassured me that I did not have a stroke reminding me that the neurostimulator had not yet been turned on and that I should not yet see any benefits from surgery. The three-inch slice above the stimulator felt like a gunshot wound to my chest. I was stiff, sore and on medication for pain. My right eye was swollen almost shut. I was miserable
After a couple of hours, the male nurse pronounced me “good to go,” and I barked, “I’m not going anywhere.” I was ignored and pouted. After counting 1-2-3, he helped me maneuver my legs into my black stretch pants with the elastic waistband. As I was wheeled out of the recovery room, one of the nurses who was present during the surgery said, “Ma’am, why did you have brain surgery two weeks ago?” He had not even read my chart.
Two days later, we were back at the Neuroscience clinic in Sacramento for the programming of the neurostimulator. This was my lucky day as I was officially “turned on”. The computer chip inside the neurostimulator was programmed to continuously send the electrical pulses to my brain to control my PD symptoms. I hoped for a Kodak moment when the neurostimulator was activated, a photo that would show my drastic improvement. Instead, my improvement was barely detectible.
DBS was not a cure for PD. Hopefully it would partially alleviate my PD symptoms and allow me to experience a better quality of life. It's called living better with electricity.