[Editor's note: After years of involuntary shaking, freelancer Jerry Butler underwent deep brain stimulation at the University of Arkansas for Medical Sciences Medical Center in June. In part 2 of his three-part account, he describes what it is like to be awake during brain surgery.]
With only scant evidence, my brothers called me "Numb Skull" when we were kids. My skull was verifiably numb, though, when an intern positioned my gurney under some bright lights in the neurologic surgical suite.
My skull, above my ears and eyebrows, was completely numb because doctors had injected several needles of a local anesthetic into my scalp.
My head was held rigid by the helmet into which my skull was pinned and screwed. I could only see a ceiling with light fixtures. It was cold in the room, and the hospital gown I was almost wearing made it seem colder.
Brown eyes peered at me over a surgical mask. "Mr. Butler, I'm Dr. Petersen's nurse. Can you tell me why you are here today?"
"Yes," I replied. "I am to have a deep brain stimulation procedure to stop uncontrollable tremors in my arm."
"That's right," the voice replied. "And which side of your brain is to be operated on?"
"I understand the doctor will drill a hole into my skull on the left side, because it controls the right side of my body."
"Exactly! Dr. Petersen and the anesthesiologist will be with you shortly," she said.
Dr. Erika Petersen is professor, researcher and director of the neurosurgery program at UAMS (see arkansasonline.com/927HP). She studied history at Princeton, attended medical school in North Carolina and was chief resident in neurosurgery at the University of Texas Southwestern Medical Center. She did research and a clinical fellowship at the National Hospital of Neurology in London.
I chose her for my surgeon because she has done more deep brain stimulation procedures in Arkansas that anyone else in the last five years. I had talked with four of her former patients who had been pleased.
I was not put off that she had the congenial disposition of a PTA vice president.
WRITE YOUR NAME
"Hello, Mr. Butler!" she said, leaning over my face. I could only see people fully if they leaned far over the table where I lay, for it was raised high off the floor.
"The first thing I want you to do is write your name on this board. Then draw a square and a circle and the numbers 1, 2, 3."
She held a small white board at arms length above me. With a felt pen, I tried to comply. The result was not just an unreadable signature; it was unrecognizable as being the product of an intelligent life form.
"Later I'll ask you to do the same thing, and we'll see if we can make it any better," she said.
"Now, what kind of music would you like to listen to? We always let the patient decide, since they'll be awake. One of our interns can find anything you want on Pandora."
I decided on the blues, music that faces adversity with optimism and resignation, with sadness and hope, with dread and humor. If I could sing along with lyrics during the surgery, it might distract me from any unpleasantness. "Can you play a little Leon Redbone?" I asked.
Shortly, the gravelly, whining voice and distinctive guitar of "Lazy Bones" came over the sound system. Whether the eight young people working in the operating room appreciated my choice, they never said. I made a mental game of waiting for my favorite tune to come up on the sound track.
The next voice was a young doctor who introduced himself as chief resident of anesthesiology. "You'll be awake during surgery," he said. "The brain itself is insensitive to pain, so you will feel nothing. The local anesthetic you received when the metal frame was attached to your head will deaden the surrounding tissue."
He sounded precise and professional. He asked if I had any questions. I said, "No."
I was alert, but it didn't occur to me then to ask the most obvious question: If I was to be awake during the entire operation, why did I need an anesthesiologist? Aren't they the guys that put you to sleep? But of course he was there to ensure the local anesthetic kept working.
Petersen called the names of the people who were in the surgery room. I presumed it was a regular part of the medical record-keeping for a teaching/research hospital, but she made it seem as if she was introducing them just to me, as guests at a party.
Then she told me we were ready to start in earnest. "I will let you know at each step along the way," she said. "Tell me if you are hurting."
She was right to ask. The surgery per se did not hurt, but I still had sensations. There were discomforts, just not in my head. I was cold. A nurse wrapped me in a warmed blanket, becoming my new BFF. My nose itched in a spot I could not reach because of the head gear. My mind could think of nothing else but that itch. When I mentioned it, someone scratched where I itched. Instant relief.
Petersen told me I would hear clicks and metallic sounds while she attached the devices to the helmet that would help her guide instruments toward my thalamus while avoiding doing damage to arteries and veins. I heard the noises she was talking about and felt the pressure of new weight upon my neck. It was reminiscent of being in a dental chair after receiving Novocaine (kids, ask your grandparents). One feels the pressure but not pain.
Leon Redbone moaned, "I Can't Find My Walkin' Cane."
Petersen said she had draped a plastic curtain about my head. I could see the edges of it in my peripheral vision.
When she said that she was beginning to make the incision, I could feel — or maybe I could hear, via bone conduction — the scalpel slide across the hard bone of my skull. At any rate it was not uncomfortable, a bit like a barber putting a part in your hair with the base of his comb.
Then came the news that I dreaded the most: "I'm going to begin drilling that hole we talked about," she said. "It will take about 20 seconds. It will sound very loud to you."
"Do you have a Black and Decker drill?" I asked.
"The hospital wishes it was just a Black and Decker," she joked. "This one costs quite a bit more."
She had described drilling the hole in a meeting weeks before. She had shown me a model of a skull with a dime-sized hole just below the crown. She let me hold the model, and when I thought about it being my head the hole looked more nickel than dime-sized, maybe quarter-sized. I have drilled a few holes in thick metal plates in my time, and I was worried about what would happen if the bit slipped, as they sometimes do, or if it broke through the bone of the skull unexpectedly and chewed into my cerebellum. It was too gruesome to ask or think about, so I simply put my trust and life into her well trained, intelligent and experienced hands.
When she started drilling, I began a silent count. One, Mississippi ... two, Mississippi ... etc. I'm pretty sure I counted beyond 20 seconds. But it was hard to tell, because the noise of a drill biting through your skull is so loud to the person inside that skull that it drowns out thoughts.
There is but a thin line between intense noise and unbearable pain, and briefly it seemed to cross that line. It was louder than standing by a revving jet engine at a rock concert. So loud, it seemed, that when it finally stopped, all the substantial ambient noise in my surgical universe fell silent by comparison.
Eventually, I detected Redbone moaning about the "evenin' sun goin' down." That was not the song I was waiting for.
PATHWAYS OF MY MIND
I think it was at this point that she told me she was turning Redbone off. I presumed it was because she wanted her full powers of concentration on this, the most delicate part of the procedure.
"Now we are going to navigate a pathway for the probes so we can place them in precisely the right place." She said, "You may see some flashes of light or feel some twitching in your body. If you do, let me know."
I could sense that something unusual was happening in my head, but nothing seemed particularly remarkable. I was looking up, just noticing the perforations on the ceiling tiles. They seemed to have become a lovely lemon color and started to flow like water. The illusion was so subtle and the sensation lasted so briefly that I did not mention it.
When the doctor had the probes where she wanted them and connected to a temporary power supply, she had me raise my hand or arm so she could get a sense of how the probes were affecting my movements. She jiggered the probes about, referring to a magnetic resonance imaging (MRI) picture that had been made of my brain.
Once again she held the white board above me and asked me to write my name, a square, a circle and the numbers 1, 2, 3.
The difference was startling. I could read my own handwriting!
I could still detect the squiggly marks along each letter, shape and number, but the letters were much better.
"We'll try it at a slightly higher voltage setting," she said.
When I wrote on the board again, my penmanship improved even more.
She made other adjustments, and had me to write and draw again. This time I was able to write my first and last names and draw a spiral too, all while lying flat on my back with no place to rest my arm. Not an ideal posture for good penmanship.
"We can get it better with time," she said.
I held my hands in front of my face. The shaking in my right hand and arm that had plagued me more than 30 years had stopped. It was steadier than my left. I raised both hands up to look again and again. I began to cry, I was so happy. Then I laughed because I was so happy.
It is not an overstatement to say it was like a profound religious experience. The crippled man who was healed at the pool of Bethesda or the Apostle Paul on the road to Damascus could not have been more awestruck. I should have shouted, "Hallelujah!"
Perhaps she has seen such turn-arounds too often. Or, perhaps only a patient can appreciate the magnitude of how her medical magic can transform a life. She said, with more calm than the situation seemed to demand, "Now I'll arrange the wires under your scalp. We'll cover that hole with a protective cap and close. We can turn the music back on now."
Redbone had saved my favorite song for his last, "She ain't Rose, but she ain't bad ...."
STAY AT HOME SHAKIN' BLUES
After a night in the hospital for observation, I was allowed to return home. The odd sensations that I had experienced while the surgeon probed about in my cerebellum seemed to linger. For a few days that feeling remained, like being at sea for many days makes you feel the rocking of waves even after stepping on dry land.
A strip of my hair had been shaved and stitches protruded from the scar a la Frankenstein's monster.
Petersen advised that I not drive for a month. I experienced bad headaches, which I attributed to the trauma and stress of surgery and the pressure of the head gear. There were interruptions in my sleep, and I lost my appetite. None of these post-surgical symptoms were unexpected, but I had hoped that I could escape them.
More discouraging was that my tremors, which had seemed miraculously to disappear in surgery, began to reoccur. Six weeks post-surgery, I was tremoring almost as badly as when I went into the hospital for my first procedure.
Next: In Part 3 on Oct. 11, Jerry Butler will describe how his situation changed when technicians energized the probes in his brain. Part 1 appeared in Style on Sept. 20.