Emily Hughes was diagnosed with epilepsy at a young age. After years of living with the disease, she opted for life-changing brain surgery.

Story by: Nick Picht; Reviewed by David A. Sun, M.D., Ph.D on January 5, 2024

Very rarely does the average person stop in the middle of the work day to count their blessings. Often, living day to day is taken for granted.

But for Emily Hughes, this could not be further from the truth.

Despite the hustle and bustle of Norton Hospital’s ever-busy mother-baby unit, this postpartum nurse reminds herself daily of the obstacles she’s overcome and the dream she’s actively living out.

“My whole life, ever since I was 3 years old, I wanted to be a nurse,” Emily said. “That was my life goal.”

But for most of Emily’s life, that goal was in serious jeopardy because of a serious neurological condition.

‘I just remember waking up in the hospital’

It came on like an avalanche.

Emily, 8 years old at the time, was in her second-grade classroom when a headache began to overtake her. She didn’t know what to do.

“I had never experienced a headache like this,” she said. “All I remember was just looking up and hearing people say, ‘What’s wrong?’ And then I just remember waking up in the hospital.”

She had just experienced her first tonic-clonic seizure, a type of seizure that involves a loss of consciousness and violent muscle contractions. Emily officially was diagnosed with epilepsy, a neurological condition where surges of electrical activity in the brain can cause recurring seizures.

She visited several pediatric neurologists, who prescribed medications in an attempt to control her seizures. They also discussed the possibility of brain surgery as a more permanent option to help with her condition. At the time, Emily declined, took the meds and continued to live her life.

Her seizures, however, still came on periodically throughout her teenage years.

Her medication was not working like it should. Emily’s epilepsy was considered drug-resistant; the higher doses did little or nothing to resolve her symptoms. In fact, the medication was doing more harm than good. It was beginning to affect her learning.

She tried tutors and studied hard, but still couldn’t retain information.

“I had guidance counselors tell me [I] would not become a nurse, [I] would not get into nursing school and I needed to pick a less competitive major,” Emily said. “I just walked around and thought this is what a normal person feels like — you’re tired, you don’t really want to do anything, you have horrible brain fog, and you just lived with this and waited for something to happen.”

Still, Emily resisted the idea of surgery, until one day in 2012.

“It wasn’t until one day, I was at home from college, and I had already had seven partial seizures,” Emily said. “And I went [downstairs], it was probably 12 o’clock in the afternoon, and I looked at my mom and said, ‘I’m done. Let’s go forward with the surgery.’”

Emily undergoes surgery

Emily began the pre-surgical process, a series of tests that would determine the location of her seizures, their origin and the possibility of relieving them for good. In the process, the team also needed to determine which parts of her brain controlled crucial functions like memory and speech.

It was during this pre-surgical process when she met David A. Sun, M.D., Ph.D., neurosurgeon and executive medical director of Norton Neuroscience Institute.

“In [Emily’s] regard, I’m the last piece of the puzzle,” Dr. Sun said. “There is a team of neurologists that is involved who are trying to figure out where the seizures are coming from. There are electroencephalographic technicians who have to record the electrical activity of the brain [using an EEG]. There are neuro-radiologists. There are neuro-psychologists who evaluate the way the brain is working. And what happens is that collaborative team gets together and we review all the patient’s data. And we determine how we can figure this out.”

Emily’s condition would require two surgeries.

The first was called a subdural grid craniotomy. Dr. Sun would have to make a large incision and remove a window of bone from the skull. From there, he would place thin plastic sheets of electrodes on the surface of the brain to record exactly where Emily’s seizures started and whether they could be treated. In essence, it was a surgery to determine if Emily was a candidate for the real brain surgery.

“Now that is jumping into the deep end of the pool,” Dr. Sun said. “Because everybody wants to be told, ‘We know exactly what we need to do. We figured it out. We’re going to do one thing, and then we’re done.’ In her case, we had to challenge her to say, ‘Are you willing to go to the operating room where we’re going to place these tiny little, thin plastic sheets on that have little metal electrodes on them directly on your brain and record where your seizures are coming from?’”

Emily agreed, and Dr. Sun performed successful surgery on June 4, 2013, confirming her seizures originated in scar tissue on her brain’s right temporal lobe. The procedure also confirmed Emily was a candidate for the second surgery. Then, on June 6, Dr. Sun successfully removed the scar tissue from that area of her brain.

“I always tell patients that the epilepsy team has taken you through this long tunnel, and you’ve come out on the other side, and we have an idea of where your seizures are,” Dr. Sun said. “And now I need to take them up the top of the mountain and back down the other side.”

‘I just felt so much better’

Surgery was an immediate success. Emily has been seizure-free since leaving the operating room, now more than a decade ago. She’s also drastically reduced the amount of medication she was taking, opening her up to a world of new possibilities, including setting her sights again on her lifelong dream.

“I just felt so much better,” Emily said. “And I never knew how sick I was until after the surgery, and I came off all that medication. I’m so thankful. It’s a life that I’ve always wanted, that I’m living right now, that I never thought I was going to have.”

‘As good a day as it can be’

“When you talk about patients with neurological disorders, neurological diseases or neurological syndromes, I just want to make every day as good a day as it can be,” Dr. Sun said. “We can’t cure every one of the disorders. So how can we make every day as good for you as it can be? How can we help you get to that goal?”

Emily eventually graduated from Northern Kentucky University with a degree in nursing. Now, she’s a registered nurse, working in the mother-baby unit in Norton Hospital, caring for the youngest and most vulnerable patients.

But, Emily has even bigger dreams.

She hopes to continue her education and specialize in neurology, to one day care for patients with epilepsy, hoping to help them through the process firsthand.

“The longer I go seizure-free, the more I have such a passion for neurology that I think about extending my education,” Emily said. “[I’ve thought about] becoming a nurse practitioner and specializing in epilepsy or neurosurgery, and being that person that I wish I had. That’s someone to sit down with and say, ‘I went through this; I know what you’re going through.’ So who knows what the future holds.”

“She has this amazing goal,” Dr. Sun said. “That boggles my mind, because if I had to go through everything she had to go through, and now I’m on the other side, there may be a part of me that might say, ‘I don’t ever want to look at epilepsy ever again.’ But she actually wants to get in front of those patients. She wants to take care of them at the bedside; she wants to take of them in the office. And I think she’s just an amazing human being.”