John’s Story: Epilepsy

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In golf they call it a “bad lie.”

A golfer strikes the ball, hoping to place it in a comfortable location on the fairway or the green, but the ball winds up somewhere else entirely – on the side of a slope, perhaps, or in a clump of weeds in the rough. Extricating oneself from a “bad lie” requires expertise, planning, and, sometimes, a little luck.

In some ways John’s story resembles a golfer’s successful triumph over a bad lie. John – who is in fact quite a good golfer – contracted bacterial meningitis when he was 6 months old. A small percentage of individuals who contract meningitis as children will experience seizures as a long-term complication. John was one of them, and he began to have complex partial seizures in his late teens. Over the years his doctors prescribed different medications that helped for a while but eventually failed to keep the seizures under control.

After his second car accident, John was referred to two specialists who helped him out of the rough. After lengthy and careful testing, physicians at the Epilepsy Center at the University of Cincinnati Neuroscience Institute determined that John could safely undergo epilepsy surgery. Nearly 19 years after the surgery, performed by Hwa-shain Yeh, M.D., of the Epilepsy Center and the Mayfield Clinic, John remains seizure free.

“I got a new lease on life,” John says. “After my surgery, I went back to college and earned a second degree. I found full-time employment in my chosen profession. And my wife and I had fraternal twin boys. So look at what I have: two beautiful kids, a wonderful wife, a job that is important to my company, and no seizures. Life is good!”

No question, John is back on a fairway that’s as soft and smooth as velvet.

John, a native of Cincinnati, was working as a golf professional at the Tournament Players Club in Scottsdale, Arizona, in 1987 when he had his first seizure behind the wheel. “I was on my way home from work, driving on a four-lane highway, and I had a head-on collision,” John recalls. “Do I know what happened? No, I couldn’t tell you. I just thank God nobody died. The car was totaled. If I hadn’t been wearing a seatbelt I’d be dead.”

John suffered a broken leg and ribs and injuries to his face, which struck the steering wheel. Doctors sewed his lower lip back on and told him he could no longer drive.

Once John had been patched up, he also had to revisit the subject of medication. Over the years, he had tried various anti-epileptic medications, alone and in combination. “Your system develops a tolerance to one drug, and then it doesn’t work anymore,” John says. “So you try another drug. I took Dilantin, Tegretol, and Depakote, in various combinations and various amounts, trying to get the right combination to work.”

John was able to get his seizures under control long enough that he could regain his driver’s license. He also took another job as a golf professional in Atlanta. A year later, tired of the long hours, he left the golf business entirely and accepted a sales position.

One afternoon, while driving home after seeing a customer, John had a sudden sensation that something was wrong. He pulled off to the side of the road and stopped the car. “But evidently I never put it in park,” John says, “and I went down the hill and rolled the car over. And that was the last straw, basically.”

A family member who works in healthcare in Cincinnati urged John to come home and make an appointment with Michael Privitera, M.D., Director of the Epilepsy Center.

John and his wife packed up and came home to Cincinnati, ready for a new start. Dr. Privitera explained that surgery might be an option, but that the only way to know for sure was to conduct extensive testing. Dr. Privitera explained that he and his epilepsy team needed to find out where John’s seizures were originating in his brain and where this “seizure focus” was in relation to parts of the brain that were involved with speech, memory, and reasoning. If the seizure focus overlapped areas of the brain that were vital to John’s quality of life, the seizure focus could not be removed.

“Going down the path toward surgery was not an easy decision,” John says. “But the chance that we could possibly eliminate this problem outweighed the risks. We got to the point where we had to do this. The seizures were coming too frequently. We had to find out whether I was a candidate for surgery, because the quality of life I had was not good. And unless you have the tests done to find out whether surgery is an option, you’ll never know.”

John spent a week in the Epilepsy Center’s Epilepsy Monitoring Unit at Cincinnati’s University Hospital, hooked up to sensors that would record details about any seizure that he experienced. To ensure that he did have a seizure, all anti-epileptic medication was stopped. “Eventually I had an ugly seizure, but that is the information the doctors needed,” John says.

The week-long surveillance enabled Dr. Privitera and his team to determine that John’s seizures were occurring in his left temporal lobe, far enough away from his language center that the seizure area could be safely removed. Dr. Yeh performed the surgery in October 1991. About a month later John celebrated by going out on the golf course and shooting a 67.

“We were able to accurately localize the seizure focus, and Dr. Yeh was skilled enough to precisely remove it,” Dr. Privitera says. “When John shot that 67 it was clear that the surgery didn’t harm his strength, coordination, sensation, judgment, or feel on the green!”

John shares his story because he knows there are others who could benefit from epilepsy surgery. He also cautions that, “My story sounds wonderful and it is, but not everyone’s story is that pretty.”

“I was very fortunate and I still feel fortunate that they were able to do surgery for me,” John continues. “Not all people with seizures can have surgery. For some reason God’s looking out for me. He kept me alive through two car accidents that I could have died in, and then I was fortunate that the type of seizures and problem that I had was operable.”

John had one seizure the day after his surgery but has had none since. He takes one tablet of Tegretol daily. “Taking medication is my choice,” John explains. “It surprises me that some people push so hard to get off the meds. I have less of a concern about getting off meds and more of a concern about preventing seizures. I’m a firm believer in, ‘If it’s not broke, don’t fix it.’ ”

Several years ago, at a picnic for people who had battled epilepsy, Dr. Yeh invited John to play a round of golf at a local club.

John recalls that on one hole Dr. Yeh struggled with a difficult downhill-sidehill lie. He hit the ball poorly and then asked John, the former golf pro, what he should have done differently. John showed him, hitting the ball perfectly and dropping it right in the middle of the green. Dr. Yeh shook his head and said, “Ah, this game of golf is much more difficult than brain surgery.”

John still smiles at the irony of Dr. Yeh’s statement.

“I am in awe of the talent that this guy has been blessed with. I feel very lucky that I was sent to the correct doctors, that I was treated well, and that they were able to find out how to resolve my problem. I thank God every day for giving these doctors the talent to do what they did for me.”

* * *

Hope Story Disclaimer – This story describes an individual patient’s experience. Because every person is unique, individual patients may respond to treatment in different ways. Outcomes are influenced by many factors and may vary from patient to patient.

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