On a normal day in 2004, Darlene Otlowski was getting ready to go to work. As she let her dogs outside, she dropped to the floor, losing consciousness. Her husband and son rushed to her side and called an ambulance.
After waking up, Darlene learned that she had a seizure. Assuming it was a one-time thing, she figured the worst was over and returned to her normal life.
Four months later, when Darlene has a second seizure, her family realized it was more serious than they thought. Unfortunately, that was just the beginning of Darlene’s journey with epilepsy.
The seizures became so frequent that she stopped telling people at work when she had them.
“It happened so much it was embarrassing,” Darlene said. “I’d start to ignore my symptoms until I hit the floor.”
Her doctors gave her a variety of anti-seizure medications over the years, but nothing seemed to work long-term.
Darlene had spent time at many hospitals due to her frequent seizures, but she never felt like the doctors really understood her situation until she went to UPMC.
It is important for anyone who has failed two or more seizure medications to be evaluated at a comprehensive epilepsy center, but until Darlene went to UPMC, she was never presented with that option.
“UPMC was the first and only hospital that understood exactly what I was saying and how I felt,” Darlene said. “I don’t know how else I can say it. It was the first place that listened to me — more than any other hospital.”
Darlene was evaluated at the UPMC Comprehensive Epilepsy Center by Niravkumar Barot, MD, MPH — a certified epileptologist — to find exactly where the seizures were taking place in her brain.
Darlene underwent testing in the Epilepsy Monitoring Unit (EMU) at UPMC Presbyterian. In the EMU, doctors used a video electroencephalogram (VEEG) to record Darlene’s seizure activity and find which part of her brain was affected. The VEEG is a simultaneous recording of clinical symptoms with video in addition to brain activity via electroencephalogram to test brain waves.
This allowed the epileptologists to get the most accurate diagnosis and identify Darlene’s seizure focus — the part of the brain that the seizures happen in.
After reviewing the EMU results, MRI of the brain, PET scan, and neuropsychological tests, Dr. Barot diagnosed Darlene with medically refractory temporal lobe epilepsy. This type of epilepsy can be difficult to treat with medication alone and doctors determined that surgery would offer Darlene the best opportunity to reach seizure freedom.
Dr. Barot referred Darlene to neurosurgeon Jorge Gonzalez-Martinez, MD, PhD. Co-director of the UPMC Comprehensive Epilepsy Center, Dr. Gonzalez-Martinez is a world-renowned pioneer in novel surgical methods for treating medically refractory epilepsy.
After decades of untreatable seizures, Darlene had hope she would finally reach seizure freedom and underwent a temporal lobectomy performed by Dr. Gonzalez-Martinez.
“It was tough on my family when I decided to get the surgery,” Darlene said. “They thought I should have thought it through more, but I got to the point where I didn’t know if I would wake up in the morning. This was my chance to get better and I’m so thankful I took that chance.”
Darlene spent a few days recovering at UPMC Presbyterian and was pleasantly surprised by how easy it was.
“When I woke up, there was a little bit of tenderness, but every day got better,” Darlene said. “In the hospital, everyone is there to help you. There wasn’t one minute that was bad.”
One year after Darlene’s surgery, she feels like she’s been given a new chance at life.
“This new life is better than anything I’ve ever had. I’m so much happier and healthier, but still the same person,” Darlene shared. “I wish I could’ve had this surgery 15 years ago.”
Darlene returned to work earlier than expected and is enjoying time with her family without constantly worrying about her health. Her doctors are even reducing one of her anti-seizure medications because of how successful the surgery was.
“I don’t want anyone to be nervous about this,” said Darlene. “If anyone is at the point that I was at, I want them to know there is hope. Every single day is better.”