Welcome Back.

Streak: 9 days i

Stories you've missed since your last login:

Stories you've saved for later:

Recommended stories based on your interests:

Edit my interests

Finger pushing
[location-weather id="1320728"]


Implant device a ‘game-changer’ for Colorado Springs-area epileptic mom

The current image has no alternative text. The file name is: Aly-and-Justin-Bukoski.jpg

When explaining to her 3-year-old son about the implanted device that helps control her epileptic seizures, Aly Bukoski compares herself to a robot.

“When he is a little older, I’ll explain it in a little more detail,” said Bukoski, a mother of two. “For right now, I tell him that I’m kind of like a robot, and he thinks that’s pretty cool.”

It will be a while before Bukoski tells her children that the device, called a vagus nerve stimulator, helps her manage a condition that once plagued her with several convulsive seizures each day, including one that caused her to collapse in the path of an oncoming train.

For now, she knows she might need assistance from her son, and she is teaching him to provide it — with the aid of a tattoo.

Bukoski, who lives in Fountain, was first diagnosed with epilepsy in the late 1990s, she said, after family members and teachers noticed that she would occasionally develop a blank stare for several minutes at a time.

“At first, doctors thought I was just a very dramatic little girl,” she said. “They weren’t wrong, but that’s not what was going on.”

Bukoski was 13 when she had her first grand mal seizure, a violent neurological breakdown characterized by physical collapse, convulsions and loss of consciousness. For years, her neurologist attempted to treat her condition medically, trying a series of medications, some of which were experimental at the time, Bukoski said.

“I felt like a guinea pig,” she said. “Nothing was working.”

As she grew older, her condition steadily worsened. By the time she was 15, she was suffering multiple seizures each day. She was absent from school more often than she was present and was forced to quit participating in sports.

Treatment after treatment failed to control the seizures, and Bukoski began to feel like a spectator, rather than a participant, in her own life, she said.

“I was in constant fear of the unknown,” she said. “I felt like I had to take a step back from life.”

Despite constant physical and academic setbacks, Bukoski managed to graduate from the University of Denver, where she studied journalism and photography. But the seizures continued to plague her. One morning, as she stood on a light-rail platform on her way to work, she was wracked by a seizure and collapsed on the tracks, she said.

“I still don’t know everything about what happened, because I was unconscious,” she said. “I was given the story by a nurse. I was told that somebody jumped (onto the tracks) and pulled me out. I may never fully know what happened. All I know is that I caused a train to stop.”

With her treatment options dwindling and her condition worsening, Bukoski considered brain surgery before she heard about a less-invasive treatment that has proven effective in managing drug-resistant epilepsy.

A vagus nerve stimulator, or VNS, is a small, implantable device that is placed in the chest, beneath the skin, and delivers an electrical pulse that has proven effective in reducing the frequency and severity of seizures. It is an option for patients who, like Bukoski, have not been able to control their seizures medically but do not want brain surgery.

“It’s a tiny little thing,” she said of the device, which was implanted seven years ago. “It’s not really noticeable on my body.”

The VNS device is programmed to deliver a pulse, about 30 seconds in duration, every five minutes.

“I’ve been told that it’s not effective for everyone,” she said. “But for me, it’s been a game-changer.”

The device has also reduced her “postictal” time, the recovery period immediately following a seizure. Prior to the implantation of the VNS, Bukoski’s postictal periods — typically marked by physical exhaustion and altered mental status — could last more than two days.

Before she opted for the VNS device, having children was not an option for Bukoski. Being alone with a baby could be dangerous for both mother and child, since two of her main seizure triggers are stress and lack of sleep, both of which are common for new parents.

But she said she hasn’t had a serious seizure in seven years, and she and her husband, Justin, welcomed a second child — a daughter — 10 months ago.

“I feel like I’m no longer on the sidelines of life,” Bukoski said. “I can work a full-time job. I can drive a car. I can be alone with my kids. I can go out and do the things I enjoy without fear.”

While the VNS device has reaped life-changing benefits for Bukoski and her family, she acknowledges that it is not a cure. A seizure could occur between programmed pulses. That’s why the VNS can also be self-activated with the use of a small magnet that is swiped over the device.

Out of an abundance of caution, Bukoski is teaching her toddler to activate the device in case she is incapacitated.

“My son has a speech delay, so I make things as simple for him as I can,” she explained. “I tell him that sometimes mommy gets sick, and if he ever sees mommy on the floor, to grab the magnet from the fridge and put it over the fingers.”

The “fingers” are part of a “pinky promise” tattoo that marks the location of the VNS device, she said.

“A couple of times I’ve laid on the floor for practice, so he’ll know what to do if something happens,” she said. “He’s not perfect, but he’s learning, and he’ll get better at it.”

When both her kids are older, Bukoski plans to explain her condition in greater detail. For now, she is thriving as a full-time bank consultant, volunteer and aspiring doula. Her recreational life is also fuller than it’s ever been: She can hike, go camping and off-roading, and do many of the things she loves, without assistance.

“There are some activities you don’t want a chaperone for,” she said. “It’s a great feeling to know I don’t need one.”


Ad block goes here

Sponsored Content