BIDMC Patient Finds Freedom From Epilepsy

"Yes, It's Scary. But It's Worth It."

When Thomas Canniff was 10 years old, he began having seizures in his sleep. While other children woke up rested and ready for school, Tom often didn't. 

His nocturnal seizures interrupted his sleep night after night, leaving him exhausted during the day and struggling to stay awake in class. Years passed with medication changes, dosage adjustments and new treatment plans, but nothing seemed to provide lasting control.

"It always felt like we were trying something new, hoping this one would finally work," he said.

As he grew older, the seizures evolved. Some became tonic-clonic seizures (sudden, full-body seizures that caused him to lose consciousness), often leaving him with no memory of what had happened.

"I'd go to bed or sit down to watch Netflix, and the next thing I knew, I was waking up in a hospital surrounded by doctors and nurses."

His last memory might have been climbing into bed or settling in to watch a movie. The next was opening his eyes in the emergency department, surrounded by a medical team.

He had no memory of what happened in between.

Living With the Unknown

Over time, epilepsy became more than a diagnosis. It shaped Tom’s confidence, how he felt about his career, and even his ability to rest.

As a construction inspector in Boston, his work often involves climbing structures, working at heights and spending long days outdoors. But the uncertainty of living with epilepsy extended well beyond his work. Even simple plans, like a weekend getaway or a day at the beach, could bring anxiety about the possibility of having a seizure. He often felt restricted from doing the everyday things that people without epilepsy could enjoy without that added layer of worry.

"I was always thinking about what could happen if I had a seizure," he said.

But it was nighttime that became the hardest. Because so many of his seizures happened while he slept, bedtime no longer felt like a time to relax.

"I'd lie there staring at the ceiling because I was afraid to fall asleep."

The place where most people found rest had become the place he feared most.

"You don't realize how much of your life is affected until you're not living with that fear anymore."

A Future Worth Fighting For

In 2020, when much of the world was isolated by the COVID-19 pandemic, Tom met the woman who would become his wife. As their relationship grew, so did his vision for the future.

"I wanted to marry this woman" he said. "I wanted to be there for her, to build a life together without always wondering when the next seizure might change everything."

Meeting his wife didn't make the decision for him. But falling in love, and finding someone who became his rock through every appointment and every difficult conversation, gave him the courage to face a decision he had been fearful of.

When it became clear that he had a form of drug-resistant epilepsy, his community neurologist referred him to the Comprehensive Epilepsy Center at Beth Israel Deaconess Medical Center (BIDMC), where he met epileptologist Mo Shafi, MD.

"By the time Tom came to us, epilepsy wasn't just causing seizures, it was affecting every part of his life," said Dr. Shafi. "He wasn't sleeping, he worried about his safety at work, and the constant uncertainty was taking a real toll. That's not something patients should simply accept. When medications aren't controlling seizures, it's important to understand why, and that there are other options that could help."

Following a comprehensive evaluation, surgery became one of those options, but the thought of brain surgery was overwhelming for Tom.

"I know it's scary," Tom said. "But the epilepsy team never made me feel alone. They answered every question, explained every step, and gave me the confidence to move forward."

When Should Surgery Be Considered?

Many people assume epilepsy surgery is only considered after every possible treatment has failed.

According to Joshua Aronson, MD, a neurosurgeon at BIDMC who specializes in surgical interventions for patients with epilepsy and treated Tom, that's one of the biggest misconceptions about epilepsy care.

"Often patients are reluctant to see a surgeon because they believe surgery is a last resort option," said Dr. Aronson. "In reality, it's part of a comprehensive evaluation. For Tom, we worked closely as a multidisciplinary team to understand exactly where in the brain his seizures were coming from, weigh the risks and benefits, and determine whether surgery offered the best opportunity to improve his quality of life."

Confidence Through Compassionate Care

Tom knew brain surgery wasn't a decision to make lightly.

"I know it's scary," he said, "and there is a lot to take in."

The evaluation involved advanced testing, lengthy conversations and more information than he ever imagined. What stood out most wasn't just the expertise of the team; it was how they made him feel.

"I can't give enough credit to the epilepsy team at BIDMC," he said. "They explained everything, answered every question and made me feel incredibly safe. The nurses were spectacular too, they made the long days and tough moments more bearable just by talking, laughing and making things feel a little more normal."

No one rushed him, no one minimized his concerns. Instead, his care team made sure he and his family understood every step, giving him the confidence to make the decision that felt right for him.

His advice to others considering epilepsy surgery is simple: Don't do it alone.

"Bring someone with you. There's so much information to absorb, and having someone you trust beside you makes all the difference. For me, that was my wife. She was the rock star through all of it."

A Personalized Plan

Tom’s evaluation included prolonged video EEG monitoring, advanced brain imaging and comprehensive testing to identify exactly where his seizures were beginning. This included a minimally invasive, highly precise procedure called stereoEEG (SEEG), which uses robotic guidance to place electrodes in the brain and record seizure activity over the course of a one- to two-week hospital stay.

"SEEG is a crucial part of the epilepsy surgery journey because it allows us to pinpoint the seizure region very clearly," said Nirav Barot, MD, who cared for Tom during his hospital stay and reviewed his brain wave recordings.

For Tom, the results revealed a small area within his temporal lobe that had developed differently before birth and was responsible for his seizures.

"One tiny group of cells didn't end up where it was supposed to during development," Tom said. "Once they found it, everything started to make sense."

Because the seizure focus could be identified with precision, his neurology and neurosurgical team worked closely to develop an individualized surgical plan.

Tom underwent a temporal lobe resection to remove the small area of brain tissue where his seizures began. Using advanced imaging and careful surgical planning, the team was able to precisely target the abnormal tissue while preserving the surrounding healthy brain.

"They knew exactly where it was," he said, "and Dr. Aronson couldn’t have been better."

Dr. Aronson says that individualized approach is what comprehensive epilepsy care is all about.

“Every patient with epilepsy is unique,” he explained. “We carefully determine where the seizures are coming from, weigh the risks of intervention and tailor the surgical approach to the individual — whether that means resection, a minimally invasive procedure or an implanted device to reduce seizures. When surgery is recommended, it's because we believe it offers the best opportunity to improve that patient's life.”

It Was a Family Affair

Although Tom was the one having surgery, he never felt like he was facing it alone.

Coming from a large, loving Irish Catholic family, he knew they would all be there for him. During his surgery and throughout the days that followed in recovery, they filled his phone with messages and calls, making sure he felt their support and love every step of the way.

"It was a family affair," Tom said with a laugh. "It meant everything knowing they were all supporting me. But especially my mom. She'd been carrying that worry since I was 10, and I think she could finally exhale."

For Tom, surgery brought peace of mind not only to him, but to the family who had stood beside him every step of the way.

Looking Toward the Future

Today, Tom and his wife live in just outside of Boston. In May 2025, they were married on Cape Cod, surrounded by many of the same family members who had anxiously waited during his surgery.

Tom continues his work as a construction inspector, but now with a newfound sense of calm. The demands of his job and his goals for the future haven’t changed, but his confidence has. At work, he can focus on the job instead of worrying about his epilepsy — the seizures, migraines and medication side effects that once brought uncertainty to so much of his life. Outside of work, he can sleep at night, travel, make plans and enjoy everyday moments without the same fear hanging over him.

"I can focus on what I want to instead of worrying about my epilepsy. I can travel, sleep at night and do normal things without always wondering if something is going to happen."

A Message for Others Considering Surgery

Tom understands why patients hesitate.

"I know it's scary."

Brain surgery is a big decision, but so is living every day wondering when the next seizure will come.

"The risks are real," he said. "But living with uncontrolled epilepsy has risks too."

For Tom, surgery wasn't simply about reducing seizures; it was about sleeping without fear. Working with confidence. Planning a future with the woman he loves. Building a life instead of planning around epilepsy.

Today, Tom still goes to bed every night. The difference is that he no longer goes to bed afraid.