OHSU

Leigh and Leslie's Story

Leigh and Leslie - Epilepsy Patient StoryLeigh and her mom Leslie talk about Leigh’s decision to have surgery at the OHSU Brain Institute to treat her epilepsy.

Leigh:

I was diagnosed with epilepsy when I was 4 years old. Medicine controlled my seizures pretty well until my senior year of high school—the night before the SAT test, actually. After that, I had complex partial seizures a few times a day. It’s like when you’re working on a computer and it crashes: You lose all your work.
Over the years, I’ve seen several doctors to help me care for my epilepsy, and Dr. Smith at OHSU Brain Institute has been my neurologist since 2009. He’s the best doctor I’ve ever had. He spends up to two hours with each patient. Each time I see him, we test my vision, hearing and reflexes. I bring in my seizure calendar, and we talk about what’s been going on and discuss my medication.

Leslie:

I like that everyone at OHSU is on the same page—even literally, with the electronic medical record. Everything’s all in one place. But not only is everyone located in one place, they all work together well: We’ve worked with teams from multiple disciplines, including surgery, scheduling, neurology, neurosurgery and lab work. They collaborate and communicate; you never have to repeat your story.

The doctors on Leigh’s team were patient in answering all our concerns. They were honest about risks and expectations. You develop personal relationships, too: Jan Smith is one of the nurses in neurology, and over the years we’ve become friends.

Leigh:

It took about two years to make sure I was a candidate for a selective amygdalohippocampectomy, a surgical treatment for epilepsy at OHSU. It took that long because the whole team there wanted to make sure we tried every option and tested everything before having surgery: It’s a big deal and not everyone is a candidate for this type of brain surgery. No one wants to rush into something like that. I had multiple tests, including EEG, MRI and a Wada test to find out which sides of my brain controlled speech and memory.

Even after the tests confirmed I was a candidate, I still wasn’t sure if I wanted to go through with having brain surgery. I was really nervous about the procedure. Then, unrelated to the testing to find out if I could have the surgery, I started having about 12 seizures a day. We couldn’t get them to stop; I ended up in the ICU for four days. Even though the doctors determined the seizures were due to the stress of college life, I was still concerned: My hippocampus - a part of your brain that controls memory - was actually getting smaller on one side of my brain.

When things like that happen, you decide you need to be responsible about your own health. As I thought more about the surgery, I met with Dr. Burchiel twice. He was straightforward, and I appreciated that. He gave me all the information and spent as much time with me as I needed. He made it very clear that it was my decision. He also told me something that stuck with me: If the seizures continued like they were, I’d have the memory of an Alzheimer’s patient by age 40. 

Leslie:

The surgery took four hours; Leigh’s dad and I were so nervous. The nurses called every few hours to update us. Dr. Burchiel and Dr. Gregory Anderson, along with Dr. Lee and Dr. Thompson and staff were 100 percent efficient and professional.

Leigh:

It’s been six months since I had surgery. Since then, I’ve graduated college with honors, majoring in Sociology and Spanish. I still get seizures, but much fewer—maybe two a week instead of 20. They’re not nearly as disruptive: I don’t lose consciousness or memory, and can tell they’re coming.

I’ve got a lot to look forward to: In college, I missed out on study abroad programs, but this spring, I’m going to Puebla, Mexico, to teach English. In September, my family and I will go to Spain. I currently volunteer with the Epilepsy Foundation. In the future, I plan to use my Spanish skills to be an advocate for people with epilepsy