The Operating Room
I looked at the operating room ceiling, and then at the operating room table as the doctor told me I should get comfortable. I was suddenly aware of the cold and the noise of the operating room. It was colder and noisier than I remembered. I laughed to myself as I thought of the term “get comfortable” for what my purpose was. The neurosurgeon worked with me for 10 minutes positioning me as half recumbent, half sitting up so that I could remain still for three hours. I looked toward the anesthesiologist at the foot of the table. He had told me that they wanted me with no pre-op sedation, as that might suppress my tremor, and he had said he would not be doing much. I asked him if he was bored. He answered, “Kind of.” I looked and listened to the noise, to the sound of cell phones ringing their distinctive rings.
I had my second ‘timeout” when the neurologist and neurosurgeon again asked what side the surgery would be on, confirmed my allergies to medications, and told me again what I was there for. Redundant words, but welcome.
The Procedure
There were fifteen people in the room, all working in their respective expertise of deep brain stimulation. There was no signal as the procedure began, the neurosurgeon explaining the local injections and prep; the noise continued, as did the cell phones going off. During the part where he was rubbing my newly-hairless head with an alcohol-based prep solution, I looked at my right hand and my tremor was at its worst. My hand was almost sore at the wrist from three days of no medicine and uncontrollable movement. It was the first time I had been off the medicine in four years. The surgeon calmly walked me through even the burr hole drilling. I asked him if he was sure it wouldn’t “punch through,” suddenly plunging the drill into brain jelly. He reassured me that it was not possible to suddenly cut through. I’m not sure if he knew I was joking.
At times the room would go silent then the noise would return, the significance of each lost on me. The procedure continued. I lost time and sense, and suddenly the room became quiet. Then the neurosurgeon started counting down from 15 and I heard a loud humming sound, like loud background noise, courtesy of one of the technical folk whose job it was to turn my brain waves into the audible interpretation. It was the echoes of my deepest, most fundamental electrochemistry, like tiny electricians at work making noise.
This part of the brain was more primitive than where higher thinking takes place, like for arithmetic or English grammar or what went into the battle of Gettysburg, but problematic for me. The sound was the translational magic of brainwaves made into something perceptible and then played over the loudspeakers in the operating room. As his countdown approached three, my tremor disappeared, my hand became still and the loudspeaker noise diminished. Moving only my hand up to where I had a twelve-inch view of it, I closely looked at my hand slowly opening and closing it. Tremor-free.
I choked away a tear, it was like magic.
The neurologist, neurosurgeon, and the Medtronic lady[1] chatted about the position of the leads that had just been stuck in my brain. They discussed this millimeter and that millimeter, almost a professional debate over a millimeter and a half. I thought, “Fine, you all argue all you want to, but do not move that wire! It is close enough for me,” but I did not say it. The Medtronic lady came to the other side of the OR table and said we had good placement. She held my hand, still tremor-free, and talked about low amperage. The neurologist spoke as if I were in his office and it was reassuring in that he seemed pleased. The neurosurgeon then told me he was going to “lock it in,” and instructed the dormant anesthesiologist that I could rest now. I watched him push in the contents of a 3 cc syringe into the IV line, and then I awoke in neurosurgery ICU.
Post-Op
My tremor was gone and for the rest of the day, I constantly replayed the most dramatic 30 minutes of that operating room countdown in my mind. There, in ICU, unlike previous surgeries with pre-op medication, I re-examined my hand visually, looking for tremors. Without pre-op medication like Versed and other amnesia producers, the events of the morning were clear and vivid. I was grateful, feeling like someone at the forefront of medical science. I was a beneficiary of deep brain stimulation and the journey I was on with Parkinson’s had taken a new turn for the better.
Given a general anesthetic a week later, so that the battery generator and wiring from my brain to my abdominal wall could be connected, left me foggy and feeling strange. My sequencing ability, like arithmetic solutions or the password to my computer, seemed lost. It gradually cleared up, and my future began to reemerge. During follow-up appointments, the neurologist explained that I had brain swelling and that as it improved the tremor would return. In other words, the trauma of surgery into that private space had silenced my tremor briefly, but the programming of my new control box in my abdomen was needed to send the electrical signal into the trouble spot in my brain. At the first programming of the generator, I was expecting too much and I was not listening to the programmer; rather I had my mind made up that I would make instant progress. I became increasingly despondent over the next few days. Finally, and I called the neurologist and she explained that they were just starting and that it often it took months to find just the right settings. Several more times to the doctor’s office, and many reassurances later, the tremor did as predicted and went away with the gentle use of clever electrical stimulation.
A New Path
Parkinson’s disease is still there. It is hiding, not therapeutically “cured” or even “in remission,” just out of sight, out of mind for once, or as they say, “controlled.” For now, it has been conquered by a greater force, a very small amount of electricity. The disruption in that primal brain part causes so much misery, so many physical symptoms, but also depression. It felt so good to be free of the tremor that had become an ever-waking nuisance, as well as of the minute-by-minute preoccupation with medicines, and timing when best to take them, and what to combine with what for the best effect. But that battle has just been put off, not avoided. Still, that feels like such a blessing for now.
It is now June, with the procedure having been performed in March. No tremor. Again, I still have Parkinson’s disease, but the depression is better, I can write again, and I can think of other topics late at night or entertain other causes of my deepest fears. The world is good and I have a lot of work to do before this comes back. A lot of work before those tiny electricians figure out that they are being hoodwinked by stimulation to my subthalamic nucleus. I have a lot of work to do, indeed.
Dan Stultz
1 June 2012
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Dan Stultz, MD is a retired physician who was diagnosed with Parkinson’s disease 14 years ago at the age of 57. He practiced internal medicine in San Angelo, Texas, for 28 years and became the President/CEO of Shannon Health System. He served as President /CEO of the Texas Hospital Association from 2007-2014 working on medical and health policy. He served as guest faculty at the Texas A&M Medical School in Round Rock and retired in 2016. He and Alice live in Georgetown, Texas.
Photo by Anisur Rahman on Unsplash
[1] Medtronic manufacturers devices used for deep brain stimulation, the technological “brain” implanted in your chest or stomach area that communicates with the wires placed in your own brain.