Father With Epilepsy Finds Relief Through Deep Brain Stimulation

“I can’t imagine going back to my life before deep brain stimulation,” reflects 54-year-old Craig Dornte after undergoing the procedure for epilepsy. Before deep brain stimulation (DBS), the father of three says the brain condition was impacting everything from his work to his personal life.

“I had issues with my memory to the point where I started having to do how-tos for about every part of my job to reference later. I was also having seizures at my kids’ sporting events, so I always had this fear in the back of my head of when the next one was going to be,” says Craig of Indiana.

Looking back, Craig recalls having his first seizure in his early 20s. On that day, Craig says he was accidentally hit in the head while removing a boat lift – falling into frigid water. He had the seizure shortly after.

“After I got out of the water, I went inside and took a hot shower. I got dressed, went out for lunch and then passed out. The last thing I remember is saying I didn’t feel well,” says Craig.

Craig was ultimately diagnosed with epilepsy, which is a chronic disease that causes repeated seizures due to abnormal electrical signals produced by damaged brain cells. Seizures are uncontrolled bursts of electrical activities that change sensations, behaviors, awareness and muscle movements. The condition can also affect things like speech and memory. It’s unclear what exactly caused Craig’s epilepsy, and after his diagnosis, he worked with local neurologists to manage it with medications. However, his condition worsened as the years went by.

“I started having slurred speech, and it seemed like I was constantly losing track of what I was doing. I’d tell myself I wasn’t having a full-blown seizure, but I knew I wasn’t there,” says Craig.

Craig’s seizures became more frequent causing him to pass out in the shower. He also started losing his independence and could no longer drive. With medications not being enough to manage his epilepsy, Craig needed another treatment option.

“My neurologist knew about a procedure called deep brain stimulation and thought I would be a good fit for it with the type of epilepsy I have. She recommended I go to Cleveland Clinic,” says Craig.

Once at Cleveland Clinic, his care team did an extensive evaluation on him. Craig’s neurologist Dileep Nair, MD, explains he has multifocal epilepsy. This means rather than coming from just a single area of the brain, Craig’s seizure onsets were originating from multiple locations – with one of them being close to a part of the brain that controls language.

“Because he had seizures coming from both the right and left side of his brain, we really couldn't create a single surgical plan for him in one area. The part of his brain impacted on the left side also overlapped with his language network, so if we were to do surgery in that area, it would have impaired his language abilities,” says Dr. Nair.

“For patients who are not a candidate for surgical resection, which involves removing the portion of the brain that’s causing the seizures, deep brain stimulation is a potential option to help reduce seizures and the risk of SUDEP, or sudden unexpected death in epilepsy,” adds neurosurgeon Richard Rammo, MD.

DBS involves implanting a device that delivers an electrical current directly to specific areas of the brain. The electricity in that current stimulates the brain cells in that area, which can help with epilepsy and other conditions.

 “We have found the delivery of this electrical stimulation to specific targets in the brain modulates abnormal electrical activity, which can help with seizure control,” says Dr. Nair.

With a supportive care team and his family by his side, Craig didn’t have any hesitations about the procedure. “I was ready to do something to get my life back, so I put my faith in the doctors,” says Craig.

In 2020, Craig began the process for DBS, which was overseen by neurosurgeon Sean Nagel, MD, and his team. The first phase of this process involves inserting the stimulation leads into each side of the brain, the second involves implanting the stimulator battery in the upper chest and the third is when the surgical team begins programming the pulse generator. Craig says he immediately noticed improvements with his epilepsy once the programming was complete, and his seizures were under control within a year after DBS.

“My family and I no longer have that fear of when my next seizure is going to be. I’m also able to drive again. Before DBS, I couldn’t drive for over two years, so I got a lot of freedom back,” says Craig, who adds he’s grateful to his family, employer and care team for all their support throughout his health journey.

Craig now follows up with Dr. Nair and his local neurologist to make sure he stays on track. While he remains on a few medications for his epilepsy, Dr. Nair says Craig has responded well to DBS, and long-term outlooks for this treatment method are promising.

“When DBS was studied in trials, patients would see about a 40% reduction in their seizures within the first three months of stimulation therapy. At around two years or so, there was about a 56% reduction from their baseline seizures pre-DBS. Anywhere between seven to nine years out, the average patient can expect about a 75% reduction in their median seizure frequency from their baseline,” says Dr. Nair.

With DBS, Craig says he’s able to enjoy going on trips with his family again and partaking in his favorite hobbies, from boating to fishing. While DBS may not be the right treatment option for every case, Craig and his care team hope raising awareness about it can help others with epilepsy who may be good candidates.

“DBS is another tool for physicians to use when traditional surgery cannot be performed to treat drug-resistant epilepsy. It's important for people to know there are always options for them when their seizures are not under good control. Talk to an epilepsy specialist if your seizures are not improving and impacting your daily life,” says Dr. Nair.

Craig adds, “I'm more than willing to talk to anybody about DBS because of what it did for me. I feel alive again, and I don't know where I would be had I not had it done. It’s a game changer.”