Epilepsy patient now living seizure free

Pictured above: At one point, Danielle was having a seizure every seven minutes

Danielle was in her late thirties when she started experiencing random black-outs. She described them as ‘glitches’ that would last just a few seconds. However, over time, they started getting longer and more regular.

“My daughter was the first to notice. She’d be talking to me and I would just switch off. It was like the lights were on inside me, but nobody was home,” recalled Danielle.

Eventually, she decided to see a GP who sent her for some neurological tests. The results came back clear and Danielle was told it was probably stress-related.

“It seemed to make some sense at the time as I was a single mum juggling fulltime work with going to law school,” she said.

Her symptoms got progressively worse over the year, prompting Danielle to seek a second opinion. This time, she was told it could be her heart and had surgery. But that didn’t seem to fix her problem either.

After more tests, the doctors advised it was probably all in her head. Danielle was frustrated but remained convinced she was not imagining what was happening to her and asked for a third opinion.

In 2016, she was referred to Professor Mark Cook, a Consultant Neurologist and Director of Neurology at St Vincent’s Hospital Melbourne. He identified lesions on her brain that were triggering epilepsy seizures.

Danielle was admitted to St Vincent’s for five days of 24-hour video monitoring that enabled Prof Cook and his team to map the seizure pathway in her brain.

“Danielle had a complex abnormality that involved a significant part of her brain. This meant surgery to remove the affected areas was not a viable option. Instead, we opted for ablation, where a small amount of heat is delivered through the electrodes in the brain to destroy a small area of tissue,” explained Prof Cook.

A stereo electroencephalogram (EEG) was performed using 14 skewer-like electrodes and electrical current to disrupt the seizure pathway.

“The electrodes were inserted through small holes in the skull, deep into her brain, to monitor the brain activity in the targeted areas we had identified in earlier imaging studies that helped us to capture the region the seizures were coming from,” said Prof Cook.

“Once located, we burnt the trigger points using electrical current which effectively broke the seizure path connections.”

Pictured above: Neuroimaging scientist Simon Vogrin (left) and Professor Mark Cook

Navigating the highs and lows

Danielle said there were times she would be having a conversation and suddenly break into uncontrollable laughter. “When I came out of it, I would forget where I was and people would have to recap for me,” she said.

Some of these seizures were captured during the video monitoring.

“It was incredibly confronting watching it played back. I burst into tears because I could now understand why people would look at me confused; why the lady in the supermarket would take a step back from me,” said Danielle.

Just prior to her ablation, the EEG video monitoring showed Danielle was having a seizure every seven minutes.

“My surgery took place in the middle of the COVID pandemic, which meant my husband wasn’t able to come inside the hospital with me. He literally had to drop me at the door and I went in alone,” Danielle said.

“Although I was really scared, I found the level of communication I received from the team looking after me at St Vincent’s to be incredible. I felt involved every step of the way. They saw me as a person, not just a case or project,” said Danielle.

Living her best life

Epilepsy had a profound impact on Danielle’s quality of life. Things she’d once taken for granted, she could no longer do.

“I couldn’t go to the pool unless I was supervised. I couldn’t drive anymore and four-wheel driving is one of my passions. I even became nervous about cutting up vegetables for dinner and wouldn’t shower unless my husband was home, in case I had a seizure,” said Danielle.

“In the 10 years I have been going through all this I never once gave up hope. I adjusted to the changes; I didn’t just sit on the couch and stop living.”

Even after she learned there was just a two per cent chance the surgery would work, Danielle refused to give up her fight.

“That news would deflate a lot of people but to me, it was better than zero,” she said.

Now in her late forties, Danielle has been living seizure free for three years since her surgery and is about to embark on the adventure of a lifetime, travelling around Australia for a year in a caravan with her husband.

Pictured above: Danielle and her husband now plan to travel around Australia in their caravan