Deep brain stimulation offers hope for tremor sufferers

Desperate for something that would calm his shaking hands, Sylva resident Ted Kubit found relief in deep brain stimulation, a surgical procedure that involves drilling holes in the skull and implanting a device in the chest that sends signals to electrodes anchored in the brain.

“It got to the point where I couldn’t even brush my teeth anymore,” Kubit, 72, says of essential tremor — a disease that afflicts millions of Americans.

“The problem with the tremors is you have trouble eating, drinking,” he says. “Your everyday skills you need to get through life are getting worse and worse and harder to put up with, so you end up not wanting to be out in public at a restaurant or anything like that, because you might be spilling and causing problems that embarrass yourself.”

Deep brain stimulation, sometimes called “a pacemaker for the brain,” can also help control tremors caused by Parkinson’s disease, says Dr. Richard Lytle of Carolina Spine and Neurosurgery Center in Asheville.

“It really can potentially help people’s quality of life significantly,” he says. Lytle performs the surgery at Mission Hospital. “It’s probably one of the most satisfying groups of patients that we get to deal with. A lot of them had very bad tremors, and it enables them to get control of their hands again.”

Essential tremor is a neurological condition that causes a rhythmic trembling of the hands, head, voice, legs or trunk, according to the Essential Tremor Foundation. The malady is often confused with Parkinson’s, although it’s eight times more common: An estimated 10 million Americans have essential tremor. Also called familial tremor, it’s a hereditary disease.

Kubit, a retired electronics technician, says the disease was passed down to him by his mother. In his 20s, he knew there was “something wrong,” but essential tremor wasn’t diagnosed until Kubit was 45 and his family doctor sent him to a neurologist.

“I had trouble keeping my hands steady when I was trying to write or trying to do something that was a little more precise where you needed to be steady, and I had no control over it,” says Kubit. “It was affecting my job performance.”

Kubit took various prescribed medications to bring his tremors under control, but the dosages increased while side effects from the drugs grew worse.

“It was a process of trying different medications and different doses to make the tremor better, and nothing seemed to work,” he says. “I said, ‘I can’t put up with this.’”

His doctor, James Patton of Asheville Neurology Specialists, suggested deep brain stimulation and determined that Kubit qualified for the operation.

Apprehensive about undergoing a procedure that involves drilling holes in his skull, Kubit decided the surgery was worth the chance.

“I had researched what the surgery was all about, and I knew it had been done many, many times,”  says Kubit. “I knew what the benefit could be, and I said, ‘I can handle this.’”

So Kubit underwent his first surgery in 2006, doctors first targeting the left part of his brain, which controls movement in his right hand. He was more than pleased with the result.

“Having the surgery was life-changing for me,” he says. “One of the first things I did when I got home from the surgery was I wrote out a check. I showed it to my wife and said, ‘Look at this.’ I said, ‘I can write again.’ That was a big change.

“I’m a fly-fisherman and I love fishing, and I had to back off on that because I couldn’t even tie a hook on a line anymore. With the surgery, I was able to start fishing again. I feel like I got my life back.”

Kubit had a second surgery in 2007 to control the tremors in his left hand. “Quite often you need two hands to do things,” he says.

Lytle says the surgery involves implanting a pin-size electrode in the brain. “Going back to the ’50s, we’ve known that you can go in and make lesions on the brain for people who have tremors or Parkinson’s disease, and their symptoms, a lot of times, get better,” he says. “Deep brain stimulation is an alternative way to get the same physiological result, and you don’t hurt the brain in the process.”

The electrodes must be placed in very specific locations, depending on the disease process.

“While they’re awake in the operating room, we will turn the device on and make sure we’re helping their symptoms and not giving them any bad side effects,” Lytle says. “Once we’re happy with that, we lock it in place.”

Kubit says he found that part of the procedure intriguing.

“A neurologist analyzes the neurons firing in your brain, and by the sound of the neurons firing, they can tell if the wire is in the right place,” he says. “It sounds like AM static on the radio. You can hear the changing pitch and volume as they move the wire in your brain. That was pretty fascinating to me,” says Kubit.

Next, the surgeon embeds a battery-powered “implantable pulse generator” under the chest wall. This device electrically stimulates areas of the brain that control movement and blocks abnormal nerve signals that cause tremors. The generator is connected to the electrode by a wire running under the skin from the chest to the head. Programming the device completes the process.

“The battery has multiple settings,” Lytle says. “A remote control like you would use with your TV can turn the battery up or down and change the settings and change the electrode contacts.”

The procedure was approved by the U.S. Food and Drug Administration in 1997, and Mission is the only hospital in Western North Carolina where it’s performed. Lytle says he’s done it for about 125 patients since 2005. Symptoms are relieved in about 80 percent of patients, he says.

The goal is to reduce and possibly eliminate the tremors, he says. “You’re trying to make their rigidness better. You’re trying to make their slowness of movement improve. You’re trying to decrease the medication. We’re very successful on a lot of those counts.

“I’ve had people tell me they got to take communion in church again for the first time in 10 years. Other people are just thrilled they can go out in public and have a meal and not feel like they are making a mess on themselves or spilling food constantly during the meal. It really gives them back a lot of independence a lot of the time, and there’s a huge improvement in their self-image, it seems.”

Lytle says the relief is long-lasting.

“If you have a tremor and you have the surgery and your tremor got better, that’s going to stay better the rest of your life,” he says. “It’s not going to come back.”

But the procedure won’t stop the progression of other symptoms of Parkinson’s, such as dementia, Lytle says.

He believes that the population of people with essential tremor, which typically afflicts older people and grows worse with age, is “hugely underserved,” but he understands patients’ reluctance to try deep brain stimulation.

“I think that’s a group of people we really need to reach,” Lytle says. “I think once [they] get more educated about the procedure and realize how really minimally invasive it is and how easy it is to tolerate, then most of [their] fears are allayed.”

Kubit started a support group for people in the Sylva area dealing with tremors.

“I want to make them more comfortable in dealing with tremors,” he says. “I’m so thankful, I wanted to give back to the community. I told them what my experience was. We all have to make that decision [to undergo the procedure] ourselves. Surgery always has a risk.”