The decision to have the epilepsy surgery that resulted in prosopagnosia was not one that Chuck undertook lightly. He had been taking medication since he was 15 years old -- a spectrum of mono and combo therapies that included carbamazepine, phenobarbital, phenytoin, valproic acid and others -- but had never been seizure-free. At the time he was considering surgery, he was on high doses of two medications, which caused dizziness, hand tremors and occasional insomnia. He needed lab tests every three months to monitor his liver function.
When we arrived in Atlanta in 1979, Chuck had found a neurologist recommended for his expertise with epilepsy. The physician was young and energetic and served on the boards of several professional medical organizations. After experimenting over 10 years with multiple combinations of anti-epileptic drugs, however, the neurologist threw up his hands and told Chuck he had nothing else to offer. That's when Chuck decided to find another neurologist, who was the first to mention the surgical option.
In March 1993, Chuck was referred for testing to the Medical College of Georgia, now Georgia Regents University. That May, he was hospitalized for 10 days of EEG and video monitoring for seizure activity, using scalp and sphenoidal electrodes. The procedure, in which he was deliberately sleep- and exercise-deprived in an effort to trigger "typical" seizures, suggested his began in the left temporal lobe and migrated to the right anterior temporal area. When the prosopagnosia was discovered, that would become a significant finding.
Chuck also underwent baseline neuropsychological testing to assess memory and learning, general functioning, language, visual-spatial functioning, attention and concentration, cognitive flexibility and planning. Because he is "mix-handed," writing with his left hand but performing many functions with his right, he also underwent intracarotid amobarbital assessment, better known as the Wada test, which confirmed he was left cerebral language dominant but with a significant left-to-right crossflow.
In July, Chuck returned for a week of monitoring with left and right occipital temporal depth electrodes to try to pinpoint the focus of his seizures. The monitoring confirmed seizure activity starting in the left temporal lobe and sometimes spreading to the right side of the brain.
Still, the list of potential complications associated with the procedure -- in Chuck's case, a left posterior temporal-occipital multiple subpial transection and left posterior inferior temporal-occipital resection with electrocorticography and stimulation mapping -- was long and daunting, up to and including blindness, coma, stroke, paralysis or death.
In fact, Chuck's neurosurgeon counseled Chuck, then 40, that epilepsy surgery posed greater risks for him than for the average candidate because he was "a complicated patient" and more "highly functioning" than most surgical candidates, with a white-collar job in inventory management, a stable family, a home and a large circle of friends.
But living with seizures that occurred as often as two or three a week and without warning -- at home, at work, at church, at meals, awake, asleep -- was increasingly difficult and even risky for him. One of the scariest incidents occurred when we were picking up a few items at the local hardware store on a Saturday afternoon. While our children followed me on a quest to find the right paint color for an indoor project, Chuck went to the garden section to retrieve some weed killer. I found him several minutes later in the altered state of consciousness typical following a seizure. Some minutes later, Chuck complained his mouth tasted bitter and he needed a drink of water. Instinctively, I looked at the bottle of weed killer in his hands and inspected the cap. Somehow, he had managed to open it following the seizure and swallow several ounces. Fortunately, the weed poison wasn't fatal to humans -- only nauseating -- but a concentrated form of insect repellent could have hospitalized or killed him.
Chuck and I reflected on incidents like these frequently during the months he was evaluated for surgery. We considered ourselves blessed to have two beautiful children, good jobs and a home in metropolitan Atlanta -- the middle class America dream. Were we playing with fire? Asking the right questions? Seeking a perfect world that did not exist? Could the surgery somehow leave Chuck more incapacitated than the seizures?
In early December 1993, Chuck agreed to have his name placed on the surgery schedule. "If I don't do it now, I'll be calling to get back on the schedule the next time I have a seizure," he said at the time.
