A procedure called deep-brain stimulation surgery turned back the clock for a New York man with Parkinson’s disease.
Eight years after his diagnosis with Parkinson’s disease, Mark Syverud faced a decision.
The Canandaigua man could undergo surgery that promised to slow down or even turn back the clock on a disease robbing his ability to walk, type, even dial a phone. But there was a catch: The surgery — brain surgery — would have to be done while he was conscious, and there would be no guarantees.
“I thought, ‘Am I crazy for doing this?’” he recalled. “There’s a risk of stroke, and there’s a risk of death — which is pretty hard to fix. But I was thinking about not where I was, but where I was going to be. I felt like I really had to do it.”
Now, just two months after doctors implanted what amounts to a “brain pacemaker,” Syverud is preparing to give a second of two public talks on the procedure, which dramatically reduced his symptoms.
“It was two weeks after the surgery when they actually turned the neurotransmitter on, and my tremor stopped immediately — it just stopped,” Syverud said. “Initially, I wasn’t too impressed, because my medications stopped the tremors. But then, they didn’t come back. The next morning, I woke up and I felt fantastic. I went for a three-mile hike.”
Syverud, a former Messenger Post Media editor, was diagnosed with Parkinson’s in 2001.The degenerative brain condition impairs motor skills and other functions, and progressing symptoms forced him to retire in 2007.
“I worked for six years, until it got too hard to work — too hard to type, mostly,” he said.
His difficulty typing was caused by tremors, one of the disease’s most common symptoms; he also suffered from periods of bradykinesia, where his movements slowed to a crawl.
“I was like the Tin Man,” he said. “I couldn’t move until I got my oil. In this case, the oil was (my medication), Levodopa.”
Typically, as Parkinson’s disease progresses, patients have to take more medication to control the symptoms caused by a loss of dopamine-producing cells in the brain. Eight years after diagnosis, Syverud was taking four different medications, multiple times per day. More drugs also means more side effects.
“The dyskinesias that you see, like if you’ve seen Michael J. Fox on television, he has those uncontrollable movements — those are largely a side-effect of the drug, not the disease itself,” explained Syverud.
Syverud’s doctor, Canandaigua neurologist Dr. Robert Knapp, told him he had another option: deep brain stimulation surgery, or DBS, a procedure in which an electrode is implanted in the brain while the patient is under local anesthesia.
Canandaigua resident John Paul, founder of the Parkinson’s Support Group of the Finger Lakes, had the surgery himself about a year ago and found it to be a long haul.
“I underwent 10 hours of surgery, and of course the patient is awake the whole time,” said Paul. “There’s a very good reason for that. The surgeon has to communicate with you the whole time to find out where he is in the brain.”
“I didn’t expect it to be a 10-hour surgery,” Paul added. “They did one side of the brain; they put the electrode in and left it there. Then the surgeon asked if I wanted him to do the other side, and I said, ‘Yeah, let’s get it done.’”
But Paul, who did improve, said he would have had DBS even if he had known how long it would take.
“The disease was progressing much faster than we thought,” he said. “I didn’t feel like I had any choice.”
For Syverud, the decision didn’t come lightly either.
“John Paul told me what to expect, and it was sobering,” Syverud said. “That’s a long day. But he said he was headed for a wheelchair. He thought he was headed for a nursing home.”
Like Paul, Syverud felt he had no other option.
In April, Syverud traveled to Charlottesville, Va., where his brother, a doctor, helped arrange for neurosurgeon Dr. W. Jeffrey Elias to perform the surgery at the University of Virginia’s hospital network.
In the operating room, Syverud’s head was secured in a titanium halo that would prevent any inadvertent movements, and he was given local anesthesia for the surgery, a procedure that he describes with his customary humor.
“They put a needle the size of a Buick into my brain,” he said. The target was the marble-sized portion of the brain called the subthalamic nucleus, “which in my case is dysfunctional, spongy goo.
“I don’t see any of this, thank God. They stick this needle in ever so slowly … and when they get to the right spot, the tremor just stops, while I’m on the table.”
“Ever so slowly,” in Syverud’s case turned out to be a total of four hours spent targeting the correct location. Most of the time taken to perform DBS surgery is spent locating the optimal area, explains Elias, using techniques like listening to digital recordings of brain cells that respond to patients’ movements and sending electrical pulses through the electrode to evaluate results.
“A lot depends on getting the tip of the electrode in exactly the right spot,” explained Dr. Fred Marshall, the University of Rochester neurologist working to fine-tune Syverud’s neurotransmitter after surgery. “My ability to program the DBS units … is ultimately dependent upon the neurosurgeon getting the electrodes in exactly the right location.”
During the final hour of surgery, Elias inserted an extension wire and neurotransmitter under Syverud’s skin.
“I was asleep for that hour,” Syverud said. “I was ready to be asleep.”
In the waiting room was Syverud’s wife, Ellie, who had carefully tried not to influence her husband's decision whether to undergo the surgery.
“I always have an opinion, but it’s his body, and he has to do what he thinks is best,” she said. “I think he tends to not even tell me how bad it feels, so as not to burden me. So I always said I would support him whatever he chose to do.”
Now, Mark Syverud can admit that he did try to hide his fears.
“I didn’t let on that I was so scared,” he said. “But when I came out, I didn’t even care whether it worked or not. I was just glad to have survived. And then two weeks later, (when the neurotransmitter was turned on), I was pleasantly surprised.”
Both Mark Syverud and Paul agree that they couldn’t call the results of the surgery “dramatic.”
“I had trouble walking for a period of time after the surgery, and that was unexpected,” Paul said. “But I feel like the surgery helped me a lot. At the rate I was going downhill, I don’t know where I would be right now.”
Immediately following surgery, Syverud was still experiencing tremors and relying on all of his normal medication until he was deemed recuperated enough for his “brain pacemaker” to be turned on, enabling him to take that first hike.
It was a notable feat for Syverud, since the Parkinson’s had given him an awkward gait that made walking difficult.
“It is exciting. It makes me very happy,” Ellie Syverud said of watching Mark’s improvement. “One of the things Mark has always loved is hiking. He kept doing it, but he couldn’t enjoy it.”
Though all signs point to a favorable outcome for Mark Syverud, he added, “They say six months is the best time to judge how it’s working.”
That’s because it could take that long to adjust patients’ medication levels — typically cut in half, or better — and their neurotransmitters following the surgery to make sure they see optimal benefits.
Marshall explained that each implanted electrode has four tiny contacts or “ports,” that can be programmed to emit electrical pulses of different voltage, frequency and duration.
“It is not unusual to require several hours of programming during the weeks after surgery,” Marshall said, as he carefully adjusts each variable while observing patients’ responses.
What Syverud himself ends up with, he said, is a device to control the neurotransmitter — like a television remote, but with fewer buttons.
“There’s a remote control that runs my brain,” he said, laughing. “It controls my brain, but it’s simpler than a TV remote. I’m not going to let my wife get her hands on it. She’ll be pressing the button that says, ‘Wash the dishes.’”
Marshall said that, compared to the average patient, Syverud is doing extremely well. Overall, he counsels prospective patients that there is an 85 percent chance that DBS will improve their symptoms.
It’s not a cure
Syverud pointed out, however, what all of the doctors stress: The surgery did not rid him of the Parkinson’s disease.
“What they like to say in the medical field is that it’s not a cure, but it increases the quality of life,” Syverud said.
“Unfortunately, with Parkinson’s, we are dealing with a progressive disease,” Marshall said. “The surgery doesn't alter this underlying fact, and patients do ultimately continue to decline over time.”
That means while research in stem-cell biology and gene therapy could still hold promise for a cure — or a more effective treatment — for Parkinson’s, the brain cells stimulated by the implanted electrodes will eventually fall victim to the cell loss that caused the Parkinson’s symptoms to appear in the first place.
But the surgery, in effect, resets the clock for patients, though its not clear yet for how long. Knapp added that he expects the operation to become a more commonly used treatment option for patients who are in advanced stages of Parkinson’s disease or who have complications from their medications’ side effects.
“I have three patients that I have had treated surgically, and they have all done extremely well,” he said. “In Mark’s case … the progression of the disease has been rolled back by about three or four years.”
While DBS was being tested as far back as the 1970s and ‘80s, Knapp said it’s only more recently that technology has been refined to a degree that allows the surgery to be successful.
“Accuracy is the main issue,” he said. “Now, with high-powered magnetic resonance imaging, surgeons can get within 2 millimeters of their intended target — pretty much close to a bulls eye.”
With such advances, Knapp hopes more patients will consider surgery.
“It’s important that they should know this is really becoming — you never want to say ‘routine,’ with neurosurgery — but it’s really done under local anesthesia, with a computer guiding the electrode placement,” Knapp said. “It’s really much to-do about nothing as compared with other risky surgeries out there.”
Unexpected complications can arise from surgery, notably infection around the electrode area and side effects like tingling and double vision. Elias said risk of intracranial hemorrhage — bleeding in the brain — during the surgery is only about 1 percent.
Despite the good results, Syverud won’t downplay the seriousness of the operation.
“I’m not going to soft-peddle it. It wasn’t an easy surgery for me,” he said. “The scariest part is when they drill the hole in your head. It’s just a regular drill, and your teeth are rattling. The next day, it felt like the worse hangover I’ve ever had.”
But for Syverud and his family, the ordeal was worth it.
“It’s a miracle of science,” Ellie Syverud said. “The fact that they can touch your brain and stop a tremor is amazing. It makes you think, ‘What else can they do?’ It’s really miraculous.”
Syverud has put together a PowerPoint presentation documenting his experience, including photos of the operation. The information, he says, should be of special interest to anyone who suffers from Parkinson’s disease or similar symptoms.
“They just have to see pictures of me getting my head cut open,” he said jokingly. “Anybody who comes can get inside my head — literally.”
What is DBS?
In deep brain stimulation surgery, or DBS, an electrode called a lead is implanted in the area of the brain that controls the symptoms of Parkinson’s disease.
An extension, or insulated wire, runs from the electrode to an implanted pulse generator, also known as a neurotransmitter, which is programmed to act as a “brain pacemaker.” Leads are often implanted in both sides of the brain in the treatment of Parkinson’s disease.
The surgery reduces major symptoms such as tremors and dyskinesias, or uncontrolled movements, but it cannot affect other symptoms, such as balance problems and memory loss.