At 17 years old, Terna Ityokumbul was like most high school students: consumed with friends, graduation and the future. Terna was an athlete all his life, and from a young age, he had a dream to play college football. As he continued to pursue this dream into his senior year of high school, he had a chance to make that dream a reality, receiving offers to play college football from multiple schools. However, there was one thing stopping him: his history of epileptic seizures. Terna suffered from what he calls “absence spells” in which he would lose awareness for about a minute. These were found to be focal seizures with a change in awareness. While these never affected his day-to-day life, for the first time, he realized his recent diagnosis of epilepsy could limit his future.
Despite these focal seizures, Terna was still able to play football. His episodes were infrequent, and he was able to see local doctors if he had any issues. Unfortunately, as time went on, Terna began to experience more severe and dangerous tonic-clonic seizures. This type of seizure is popularly known as “grand mal” and is the type of seizure most people envision when they think of epilepsy. Terna’s seizures began to spread to his whole brain, so that the staring spells progressed to convulsions with falling, then stiffening and jerking all over. While these were still only occasional, he began to recognize that his epilepsy now not only impacted his sense of well-being but could affect others as well.
At this point, while living in Pennsylvania, Terna’s life consisted of numerous tests, doctor visits, and overnight hospital stays. As one can imagine, this constant back and forth was leading to much frustration and exhaustion as it became almost a routine process for him. Along with this aggravation, Terna reached his breaking point after experiencing a tonic-clonic seizure so severe he dislocated his shoulder. Immediately, he decided to make health his number one priority and began researching epilepsy centers across the country. This is when Terna found Emory. After graduating from Bucknell University and looking for a new job opportunity, he became interested in Atlanta. Then after reading about Emory’s certified level 4 Epilepsy Center, Terna made his decision.
He made his move south and quickly booked an appointment with the Emory Epilepsy Center. He sat down with, neurologist, Dr. Edward Faught, director of the Emory Epilepsy Center, to create a plan that could provide hope for a long-term solution to his epilepsy. Of course, after seeing countless doctors and running every kind of test, Terna wasn’t entirely hopeful that he would ever find relief.
Eventually, he was admitted to Emory University Hospital so that his doctors could video record the seizures and estimate a source of abnormal brain activity using a scalp Electroencephalography test or EEG. During his first two days, he had two seizures which suggested a possible source of the seizures in his brain. His frame of mind instantly shifted as this was the first time a definite source of the seizures was found. Once his treatment team knew the origin of the seizures, it was time to make a game plan to treat them. Terna’s case was presented to an epilepsy conference meeting to decide what would be the best course of action. While this was going on, Terna was given different options to research so that he could make an informed decision about his care.
“Throughout the whole process there was constant communication from the entire team. This made me feel as if my case had a sense of urgency. It was very reassuring knowing that my epilepsy was just as important to them as it was to me,” said Terna.
To be sure of the source of his seizures, Terna’s neurosurgeon, Dr. Jon Willie, performed a procedure called “stereo-EEG.” This involved placing several thin platinum wires into the suspicious area of his brain to record the intracranial EEG during Terna’s seizures. This provided more certainty about the source of the seizures and suggested that a smaller operation would have a good chance of success.
After weighing his options, Terna and his physicians decided to move forward with a “stereotactic laser ablation” (SLA) surgery. This surgery is a minimally invasive laser-based procedure for people with medication-resistant epilepsy that can result in better memory function than standard operations while still providing comparable seizure control rates. Rather than having to undergo extensive open brain surgery, this surgery uses a tiny laser fiber reach and inactivates the focal part playing the most obvious role in the seizures. Emory neurosurgeons were the first to perform SLA in adults, and have completed more procedures of this kind than anywhere else. On Wednesday, April 4th, 2018, Dr. Willie performed Terna’s operation. That following Monday, Terna was back to work in the office with only a single stitch on the back of his head.
“It’s crazy how fast the recovery was, the worst part of the surgery was that I had a funny looking haircut for a few weeks,” exclaimed Terna.
Since the surgery, Terna has only experienced one seizure. He went from having 4-5 per month and now has only had one since April. When talking with Terna, he expressed how much this operation has improved his quality of life, not just for himself but for all of his loved ones as well.
Terna has now lived in Atlanta for three years, works as a senior buyer, and enjoys participating in sports recreation leagues and power training after work. His days no longer include trips to the ER or searching for answers. However, Terna has chosen to use his experience to “pay it forward.” Terna has been working with multiple Emory doctors in research trials to help improve treatment options for others. “There has been so much improvement in just the last 10 years, someone had to go through the research to develop the surgery I had, so I want to be able to give back and help someone 10 years down the road,” said Terna.
It is essential to understand that surgical treatment for epilepsy is not a last resort. If two or three anti-seizure medications have not completely controlled seizures, it is time to consider surgery. Modern epilepsy surgery is relatively safe and has a low risk of complications. Not everyone can be helped or cured by surgery, but it is important to know whether it is an option. For other people, there are newer medications, often available as part of clinical trials at Emory, and there are several implantable pacemaker-like electrical stimulation devices to help seizure control. However, surgery offers the only hope for a complete cure of epilepsy.
If you know someone who you think could benefit from a consultation with the Emory Epilepsy Center, you can visit the website at emoryhealthcare.org/epilepsy or call 404-778-7777 to make an appointment.