Ryan’s Story: Epilepsy Surgery

Ryan at the UC Medical Center

Ryan had reached one of the scariest points in his epilepsy – status epilepticus – when he and his team at the Epilepsy Center at the University of Cincinnati Neuroscience Institute knew that something dramatic needed to be done. “Status,” as it is sometimes called, happens when seizures come one after the other, in unending waves. “Fifty or 100 or more. They just went on and on,” recalls Ryan’s father, Tom. The solution for Ryan was epilepsy surgery, performed at the UC Medical Center, and since then he has been seizure-free for 2 1/2 years.

Ryan had his first seizure at age 17, the day he had his senior pictures taken in high school. He was referred to the Epilepsy Center, where an epileptologist (a neurologist who specializes in epilepsy) treated him with medication. For the next five years the medications kept Ryan seizure-free, and he then enjoyed five additional seizure-free years without taking any medications at all.

But Ryan’s seizures returned when he was 27, and the medications became less and less effective. The seizures interfered with Ryan’s sleep, prevented him from driving and ultimately cost him his job when a supervisor thought he was faking a seizure. “I was at that point where I couldn’t sleep at night and I couldn’t do what I wanted to do during the day,” Ryan says.

The seizures also hurt his pride. “They are embarrassing when they happen out in public.”

Finally, with Ryan suffering 50 to 100 seizures a day and having numerous spells of status epilepticus, neurologists at the UC Epilepsy Center advised Ryan that epilepsy surgery should be considered. He had been through eight to 10 different medications, all to no avail. Not long afterward, the center’s neurologists referred Ryan to a neurosurgeon.

It’s important to realize that while surgery sounds risky, experts agree that having uncontrolled seizures is also risky. Seizures can lead to an accident, neurological impairment or, in some cases, even sudden death.

Fortunately for Ryan, the UC Epilepsy Center had the technology necessary to enable his surgical team to perform his surgery safely. The technology enabled them to find the location of the seizures – the seizure focus — and to ensure that removing the focus would not harm Ryan’s ability to speak, think or move.

Finding the exact location of the seizure focus would take three operations, spanning a period from January to early April 2012. During the process, Ryan wore a locket (right) that had been given to his mother by a friend. Inside the locket was a prayer: “Dear God, please take Ryan’s seizures away and give him back his life.”

Prior to the first surgery, the Epilepsy Center team used simultaneous video and EEG, along with advanced brain imaging techniques, to record Ryan’s seizures. This allowed the team to plan the first surgery. During the first surgery, the surgeon spread electrodes sparsely over the surface of both sides of Ryan’s brain.

With the electrodes in place, Ryan remained at the UC Medical Center in the Epilepsy Monitoring Unit, so that his seizures could be carefully monitored. During that time his surgical team analyzed each seizure, second by second, to precisely detect the seizure-onset area, and found that the seizures were coming from the right side of Ryan’s brain. With this phase accomplished, Ryan’s surgeon performed a second procedure and removed the electrodes from both sides of Ryan’s brain. Everyone then waited several weeks, allowing Ryan’s brain to heal.

Two months later, in a third procedure, a new grid of electrodes was placed on Ryan’s brain. This time the electrodes were placed much closer together, covering every inch of the right side of Ryan’s brain. This enabled the team to pinpoint the location of his seizures. And in the final surgery, on April 9, the surgeon removed the electrodes and also a 4-centimeter section of brain in Ryan’s right frontal lobe.

The change in Ryan’s life was dramatic and immediate, as his seizures abruptly stopped.

Ryan, who is still on medications, has applied to do volunteer work, has been cleared to drive and is hoping to be back in the workforce in the near future.

He says his faith, along with his family, helped him through four brain surgeries. Also on his side was the technology that makes epilepsy surgery possible.

— Cindy Starr

 

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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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