Toward the end of her very long day in the operating room, Joan Sikkema lay on the table while Erwin Montgomery, the neurologist, stood beside her, adjusting the voltage of her stimulator. This was just a preliminary “tuning,” giving her doctors a sense of how they might ultimately program her pacemaker several weeks later, when swelling from the procedure had subsided and the device could be turned on. But when Montgomery pushed up the voltage, Joan squirmed in discomfort. When Montgomery asked, “How does that feel?” she mumbled out a barely audible answer.
“What did she say?” the doctors asked.
Montgomery lowered his head to Joan’s: “That was really crappy,” she remembers whispering.
As the voltage increased, the stimulation had caused numbness in her mouth and throat, with obvious effects on her speech. Joan’s case turned out to be challenging. Her thalamus was very “speech-dominant,” Rezai said later; the doctors had to be careful about locating the electrode in a way that would control her tremor but not cause slurring or other speech deficits.
Several weeks after the surgery, Joan returned to Cleveland to get “turned on.” She noticed a slight reduction of her symptoms, “but nothing dramatic.” In fact, she even experienced some disquieting side effects and turned the device off (patients are given a magnetic device to shut off the pacemaker). But a week later, after the doctors had readjusted the settings of her pacemaker, she could barely contain her enthusiasm. “This time I was able to write my name, and feed myself without hitting my cheek, and drink from a cup without spilling it,” she says. “I’m doing all the ordinary daily things I used to do.”
It will take another five or six months, her doctors in Cleveland say, to get her pacemaker tuned optimally. Montgomery says that, following her second tune-up, tests showed Joan had 80 to 90 percent improvement in her intentional tremor, and 100 percent resolution of her postural tremor. But there is no quantitative instrument to measure the joy in her voice as she related her feelings after the last tune-up. “I didn’t cry until this morning,” she says, her voice tremulous with emotion, not neural dysfunction. “I think I was steeling myself in case it didn’t work. But I got much more than I expected. It’s like getting my life back.”