Matt Coomer's story

Fighting epilepsy. And the need to travel for the best care.

Until 2009, Matt Coomer was living a normal, happy life.

He was married with three beautiful children and had found success as a realtor.

But then everything changed.

In March of that year, while visiting with some friends, Matt had a grand mal seizure – the kind most people think of when they hear the word “seizure.” And although he never had another grand mal, he soon began having other seizures frequently.

He sought help, but each doctor he saw prescribed a different drug, and he developed horrible side effects in response to each new medication he tried.

“One of the drugs nearly killed me,” he said. “I broke out in such a terrible rash. It just kept getting worse and worse.” Others had other side effects that were just as detrimental to his life.

He tried different neurologists, hoping someone would offer a better solution. “To be honest, it didn’t seem like they really wanted to help me,” Matt said. “I would wait forever to get in to see them, and then they wouldn’t even take the time to listen to me.

“This wasn’t something simple like strep throat,” he said. “This was serious.”

Matt saw four neurologists in two years. “I just kept thinking, ‘I have to find a doctor that wants to help me.’”

He felt like his life was falling apart: He couldn’t drive, he couldn’t take care of his children. “I was losing my career, I was losing my family. It was taking everything from me.” 

He sought help at an epilepsy center in Cleveland. He was hoping they would tell him he could get off the anti-seizure medications. Instead they told him his heart was stopping during his seizures and that he needed a pacemaker.

 “I just didn’t want to believe them. I was in denial, I guess, and I just wanted everything to be the way it was.”

The six-hour trip each way, especially since Matt wasn’t able to drive, made ongoing treatment in Cleveland next to impossible.

So the Coomers came home feeling defeated.

On top of that, his neurologist at the time “fired him,” Matt said. “He got so upset that I went up there to take these tests, he told me not to come back. … Never once did he say there was no need to go all the way to Cleveland. That there’s a Level IV epilepsy center right here in Lexington.”

His wife, Lee, at the end of her rope and feeling like they could not rely on doctors for the answers, sat down at the computer and started doing her own research.

That was how they learned that UK HealthCare had a Level IV Epilepsy Center that offered just the kind of advanced care Matt needed.

“Oh my gosh,” she said. “It’s right here in our own backyard.”

A friend who works at UK Chandler Hospital put Matt in touch with Dr. Meriem Bensalem-Owen, an epileptologist and director of the epilepsy center at UK HealthCare.

“This was a Tuesday, and Dr. Bensalem said, ‘Tell him to come in on Thursday. It’s my day off, but it sounds like he really needs help.’”

After so much time in limbo, “It happened just that fast,” he said.

At the appointment, she listened for more than two hours while Matt told her his story. When he was finished, she told him, one by one, what his options were and what the possible risks and drawbacks were for each option.

“She said I could continue on medication … It hadn’t really worked before, but if that’s what I chose we could keep doing trial and error.”

She also told him about a new procedure known as brain mapping. Matt would undergo a series of tests to determine precisely which part of his brain was causing the seizures. And then he would have brain surgery to remove that part of the brain.

If it was successful, it was possible Matt could be seizure-free post-surgery.

“It didn’t matter what the risks were,” Matt said, “because I was drowning. I needed to get my life back.”

“I left there in tears. You have to understand, I was so relieved to have some answers. To have hope.”

The brain mapping began a week later and was done over the course of the next few months. In the meantime, Dr. John Gurley, a UK cardiologist, installed the pacemaker Matt needed to keep his heart pumping. “He knew I didn’t want the pacemaker, that I felt like I was too young for something like that, so he installed it in such a way that it can be removed,” Matt said.

And in June 2011, he underwent brain surgery. UK HealthCare’s Dr. Thomas Pittman performed the surgery

About his team and treatment 

Looking Ahead

Matt’s results have been excellent. Since the surgery, he’s had only one breakthrough seizure, and, as far as the piece of his brain that was removed goes, Matt says, “I’m not missing anything. All of my memories are there – I can tell you about every house I’ve ever sold.  It is the best thing ever. … I don’t feel any different. People ask me all the time, but I tell them nothing is gone.”

Slowly but surely, he’s getting his life back.  

Over the next year, he will be weaned from the anti-seizure medications, and eventually he should be able to drive again. He may even be able to have the pacemaker removed.

Matt says, Dr. Bensalem-Owen and the folks at UK HealthCare “saved my life. I’m so grateful.”

Additional resources

Comprehensive Epilepsy Clinic

Kentucky Neuroscience Institute

Advances & Insights publication: neuroscience topics

Request an appointment or get more information by calling 1-800-333-8874. 

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