Kim Pace was afraid he was dying. In six months he had lost more than 30 pounds because a terrible stabbing sensation on the left side of his face made eating or drinking too painful. Brushing his teeth was out of the question and even the slightest touch triggered waves of agony and a shocklike pain he imagined was comparable to electrocution. Painkillers, even morphine, brought little relief.
Unable to work and on medical leave from his job as a financial consultant for a bank, Pace, then 59, had spent the first half of 2012 bouncing among specialists in his home state of Pennsylvania, searching for help from doctors who disagreed about the nature of his illness. Some thought his searing pain might be the side effect of a drug he was taking. Others suspected migraines, a dental problem, mental illness, or an attempt to obtain painkillers.
Even after a junior doctor made what turned out to be the correct diagnosis, there was disagreement among specialists about its accuracy or how to treat Pace. His wife, Carol, a nurse, said she suspects that the couple's persistence and propensity to ask questions led her husband to be branded "a difficult case" — the kind of patient whom some doctors avoid. And on top of that, a serious but entirely unrelated disorder further muddied the diagnostic picture.
So on July 17, 2012, when Pace told his wife he thought he was dying, she fired off an emotional plea for help to the office of a prominent specialist in Baltimore. "I looked at Kim and it hit me: He was going to die," she said. "He was losing weight and his color was ashen" and doctors were "blowing him off. I thought, 'Okay, that's it,' and the nurse in me took over."
Her missive got results. Three weeks later Pace underwent corrective surgery for an uncommon problem that causes pain so intense and debilitating it is regarded by doctors as among the worst known.
"I knew the pain was real and I felt like my life was on the line and I just had to prove it to somebody," Pace said.
Pace's symptoms began in early 2012 when he developed an intermittent burning on the left side of his face and down his esophagus. The pain was mild at first but intensified during the day. Because Pace took medication for a host of chronic conditions including Type 2 diabetes, hypothyroidism, high cholesterol and severe depression, doctors at first suspected a drug reaction; Pace had switched antidepressants a few months earlier. Another possibility was acid reflux.
By the end of March he had developed a facial twitch, and the pain was worse, especially when he chewed. "Nothing really relieved it," he said. His family physician in Wilkes-Barre had suggested going off the antidepressant, but his psychiatrist disagreed. His symptoms were not known side effects of the medication, which was working well for Pace after other antidepressants had failed. The drug "turned my life around," said Pace, who was reluctant to stop taking it.