AP NEWS

Operation gives Wisconsin man with epilepsy new life

December 3, 2018
1 of 2

This photo taken Nov. 2, 2018, shows Jon Duchac reading from a book of meditations, reflecting on the medical hardships he's struggled through to get to where he is now: awake, alert, and seemingly seizure-free. (Pete Wicklund/The Journal Times via AP)

RACINE, Wis. (AP) — Jon Duchac enjoys the little things. Almost every morning, he takes time to read from a green, paperback meditation book on his front porch down the street from Horlick Field. Smoking a cigarette or two, the 60-year-old taps ashes into a bucket, watching birds chirp and waving at neighbors.

For the past four decades, finding a moment’s peace hasn’t always been this easy for Duchac.

He suffers from epilepsy, a bad case of it. In 1980, at the age of 22, Duchac said he started having more than a dozen grand mal seizures daily. Brain surgeries and excessive medication made Duchac’s life “a living hell,” he told The Journal Times .

But a relatively unknown procedure has given him his life back for the first time in decades.

A pacemaker-like machine, a vagus nerve stimulator, was implanted just above Duchac’s heart in January. Since then, he’s been seizure-free for almost a year and is no longer taking a debilitating number of medications.

“I’m 60 years old and haven’t felt this good in decades,” he said.

In 1980, a chunk of Duchac’s brain’s right temporal lobe was surgically removed at the Mayo Clinic in Minnesota. The surgery worked — he didn’t have a seizure for 15 years — but he nearly died in the weeks that followed the surgery. He also suffered from severe memory loss, an expected side effect of having part of your brain taken out.

After the seizures resurfaced in 1995, another surgery removed parts of his parietal lobe and hippocampus. That kept the seizures at bay until 2006.

The reason the seizures kept coming back is because Duchac’s brain kept healing. His brain was able to re-establish lost connections, which helped his memory come back, but also allowed the seizures to return.

Despite the side effects, Duchac said that the surgeries were worth it.

“That was no way to live,” he said. “The pain from the muscles being tense all the time while you’re seizing, it has a devastating effect. And anybody having seizures knows that.”

Still, a third brain surgery would’ve had worse side effects and been even more dangerous. Doctors placed him on a gamut of medications. The drugs reduced the chances of seizures, but had side effects that seemed as devastating as losing parts of his brain.

“They would treat (the seizures) with medication and keep adding more (doses) as the body builds up a resistance to them, so you start having more seizures so they start pumping drugs in,” Duchac said.

“They get really sedated and they really can’t do much,” neurosurgeon Dr. Shekhar Dagam added.

In 2017, Duchac was taking seven different medications daily. They stopped working after a while.

In January, Duchac said he legally died twice before being put into a medically induced coma at Ascension Columbia St. Mary’s Hospital in Milwaukee.

That’s when Dagam came into the picture.

Dagam claims to have performed more vagus nerve stimulator surgeries than almost anyone else in the U.S., as many as 400 since 2003.

“The device is an electronic device and it’s implanted around the vagal nerve in the neck,” Dagam explained. “The brain is a big, giant computer. This small pulse of electricity, it seems to release certain transmitters (in the brain) and reduces the nerve irritability of the brain that would cause a seizure.”

The science that makes a VNS work isn’t fully understood, Dagam admitted. But what he and Duchac have learned is that it works.

“A lot of patients with epilepsy, their lives are devastated,” Dagam said. “When you have seizures, you have no control of your life ... (a VNS) is able to tell the brain not to have a seizure, or at least reduce the risk.”

If a seizure somehow breaks through, a watch-like remote Duchac wears on his wrist at all times can be dragged across his chest, telling the device to send an extra jolt, stopping a seizure in its tracks. That device also records data that is shared with researchers, letting them know how Duchac’s brain is doing. It can also be used to turn off the VNS temporarily if Duchac has to get an MRI or go through airport security.

The side effects of a VNS are minimal. Every five minutes, when the device sends a bolt of electricity along his neck, Duchac said he feels a slight tingle but no pain. It’s also lowered his voice about an octave and can cause some coughing, but that’s about it.

The Swedish Department of Clinical Neuroscience reported that cognitive side effects, customary with epilepsy medications, haven’t been reported.

“The side effect profile of VNS is positive, and this treatment option offers patients with refractory epilepsy prospects of good efficacy with only minor and often resolvable side effects,” according to the Department of Clinical Neuroscience’s 2001 study.

“Some doctors are hesitant to use it. They don’t know that much about it,” Duchac said, mentioning that a doctor incorrectly told him he wasn’t eligible for the surgery a few years ago. “If this information gets out, it’s going to force doctors to look at it.”

Just as important as stopping the seizures, the VNS makes medications more effective, according to Dagam, which allows patients to take fewer drugs. Between 70 percent and 80 percent of patients experience improved seizure control, Dagam said. Coincidentally, a VNS can also alleviate symptoms of depression and obsessive-compulsive disorder, but more research needs to be conducted before a VNS can be prescribed to treat mental illness.

Duchac talks, sitting underneath a tapestry of the Virgin Mary in his home. He speaks slowly and calmly, a man without troubles.

He mentioned that he’s playing guitar again, wants to write a book and is able to drive a car for the first time in years. Last year that wasn’t possible, a time when he was sleeping as much as 15 hours a day because of all the medications he was taking.

Now, he’s down to two daily medications and is hoping to get weaned off of those soon.

After watching their dad suffer for years, two of Duchac’s sons are in the medical field — one is currently in medical school in Illinois and the other is an emergency services technician in Milwaukee.

“It’s harder for them to witness (my seizures) than it is for me to go through it,” Duchac said. “My wife has been through the fire with me.

“I had to go through hell before it came to this ... it gave me hope again.”

___

Information from: The Journal Times, http://www.journaltimes.com

AP RADIO
Update hourly