by Eve Jacobs
You've erased your long-held
notions about Parkinson's disease.|
It can strike as early as the teen years and as late as 95. You were diagnosed at 42... that's not so unusual. L-Dopa - initially your lifeline to near normalcy - eased the tremors and helped you on your way for almost 10 years. But ultimately it failed you long before you were ready to fail. And just when hope flew out the door, in walked a chance for recovery. You pushed your wheelchair into a corner, tossed your cane to the wind, and chased that fleeting dream of independence right down the street.
You were told it wasn't a cure, it wasn't perfect. You were cautioned about the risks, warned there was even a chance the brain surgery would kill you. No one could guarantee success.
Were you still ready to roll? Absolutely. Would others in your shoes do the same? Without skipping a beat...
There were Carol Gilmore and Walter Daly. Also Stanley Gusky and Sarah Plavin and many, many others. None of them expected a miracle. But they hobbled, limped, bumped, gyrated and wheeled into the hospital harboring a dream. And they left with the soles of their own two feet planted firmly on the ground. For someone with advanced Parkinson's, that's miracle enough.
Pallidotomy is not a stunning new surgery. It was first done in the 1950s, but the results were fairly hit or miss. In theory, it made a lot of sense. Destroy those cells in the brain that are causing all the trouble. It was known even then that Parkinson's patients become progressively less able to control their movements and less mobile, as diseased cells in the brain gradually malfunction and die.
Go in there and burn off those cells, said someone smart. And lo and behold - it worked. Unfortunately, without the right kind of equipment to "see" into the brain, precision was not possible. And pallidotomy requires nothing less than absolute precision.
It took another 30 years for the seeing, or radiological end of things, to catch up with the procedure. If "never do harm" is the rule of the medical profession, you can understand why pallidotomy didn't come of age until MRI (magnetic resonance imaging) was able to clearly delineate the structures of the brain.
The other interesting item about this procedure is that few surgeons do it. When "20/20" aired a segment in 1995 on the "miracle" of pallidotomy for advanced Parkinson's patients, there were only five or six specialists doing these surgeries across the U.S. One was Richard Lehman, MD, associate professor of neurosurgery at UMDNJ-Robert Wood Johnson Medical School.
Why isn't pallidotomy more popular? Because, says Lehman, it's basically a last-ditch effort and it can be dangerous: "You don't bore a hole into someone's skull and do major brain surgery unless there are no other options."
But there are many people at that point of desperation - when the drugs fail or the side effects of medicine are even worse than the disease itself. There are also many who can still get around with difficulty, but will arrive at that end point soon.
It is estimated that 2 percent of the entire U.S. population suffers from Parkinson's at any given moment. Now, take into account that L-Dopa - as well as several newer drugs - fail most people within 10 years of their diagnosis, and you have some idea of the magnitude of the problem. Also, while 80 percent of those afflicted are over 60, that leaves 20 percent who are stricken at a young age.
"This is a case where the media did a tremendous service," comments the surgeon. "Before the TV segment, many Parkinson's patients just did not know there was anything after L-Dopa." Lehman has performed 60 pallidotomies since 1993, almost all since "20/20" stirred up major interest in this surgery.
The other point worth making is that it is not a cure. The surgery makes the symptoms better, but the disease keeps progressing. That means you're just buying time - sometimes four or five years, maybe only two or three - until the further deterioration of certain brain cells catches up with you again. But during that time you just might be able to move on with your life.
Ask Carol Gilmore, for instance. She says she developed symptoms of Parkinson's in 1970 at age 32, shortly after the birth of her second child, but she was not diagnosed until 1984. At that time she was put on Sinemet, but by 1988, the disease had worsened to the point where she was forced to give up her job as a key punch operator at a medical center. Eight years later, she was barely functional.
"I could hardly walk half a block with a walker," she says. "I had a very bad tremor and was very weak. I had such severe chorea that I would just fall over. I had dyskinesia (flailing arms and legs) from the medications. I couldn't go anywhere... I was desperate."
She has since had two pallidotomies - on her left side on June 6, 1996, and on the right side in early November - and now walks three miles a day unassisted. Her husband, Jim, is very glad for her company on their treks through the park. She swears she feels 15 years younger.
"You've got to take some chances in life. How do you know how anything is going to turn out?" she comments. Gilmore recommends the procedure to anyone who asks her, but like her surgeon, Dr. Lehman, she says the decision should not be made lightly.
"I was a bad patient during the second surgery," says the 59-year-old. "They tell me I screeched... I made a lot of noise."
Walter Daly, 54: "I just wanted to live a normal life again."
Normal life to him means 18 holes of golf once a week and working as a commercial real estate broker. His Parkinson's - diagnosed when he was 40 - first caused shaking in both hands, then a limp so profound he could barely get around.
She's certainly not alone in being frightened by the surgery, which requires patients to remain awake throughout because their responses are crucial. Gilmore says the other terrifying aspect was having her head encased in what she calls a "birdcage" - a metal frame that is screwed into the skull in four places. Not only does this "halo" steady the patient's head, it also has metal bars that provide reference points for the surgeon.
"They turn the screws by hand," says Gilmore. "It makes a terrible sound."
The pallidotomy of 1997 is an extremely high-tech procedure. Lehman works closely with Rutgers professor of biomedical engineering, Evangelia Tzanakou, PhD, whose training is in physics. Her contribution is almost purely mathematical.
"The point," says Lehman, "is to stay out of normal areas and to pinpoint the abnormal."
The surgeon says they must find the "sweet spot" - the very small piece of brain tissue that's causing the havoc - which he will destroy with a heated probe. He claims that his job is not so hard compared to that of Tzanakou. Recording the brain waves transmitted by a microelectrode, she uses her laptop computer to compute and recompute the precise location of the surgeon's probe in relation to the minuscule target. This keeps them in the operating room for three-to-four hours.
First the hole must be drilled into the skull, so that the electrode probe can be inserted. "I told my dentist I will never again complain about his work after having my skull drilled for brain surgery," says Gilmore. Then an MRI scan is taken to give the surgeon a view of the brain in relation to the metal frame.
The surgeon gradually inserts the probe deeper and deeper into the brain while Tzanakou plots the brain waves. A spurt of greater electrical activity signals that the electrode has reached the globus pallidus and they are nearing the affected area. Now they must decide exactly where in this area to burn off cells, creating one or more lesions on the brain. The patient does not feel any pain.
With the introduction of the microelectrode into the surgery, Lehman says lesions can be placed very precisely, which almost ensures success. The target tissue is very close to the optic track and the cortical spinal track, which means that a misplaced lesion - even a couple of millimeters off - could cause loss of some vision, or paralysis, or be entirely ineffective.
As the surgeon prepares to make each lesion (how many depends upon the individual case), the patient is asked to open and close her hand, raise her leg and move her foot, and also to tell the surgical team if she has any visual disturbances - such as seeing flashes of lights or having blurred vision. Lehman says the patient's physical responses tell him if he is on target. He touches the affected area of the globus pallidus lightly with the tip of a heated probe, and gets the patient's reactions, before going forward to destroy cells. The process has been compared to putting a microwave in the brain.
Tzanakou measures electrical activity in the brain before, during and after the surgeon makes the lesions. If electrical activity is still high in the globus pallidus after the lesions are made, this may indicate the need for one or more additional lesions in a slightly different spot.
While being awake during brain surgery is no one's idea of a good time, the beauty of this, of course, is that when the lesion is properly placed, the patient knows it immediately.
"Suddenly the tremor stops or the spasm in your foot relaxes," says Gilmore. "It's pretty amazing."
And if all goes as planned, the patient can have brain surgery on Thursday and be home on Friday."It may not be perfect," she concludes, "but it's definitely the stuff of TV documentaries."
For Walter Daly, 54, of Piscataway, life is good now - even though he suffered a minor stroke during surgery. His speech is slightly slurred, but he says that's something he can cope with. He was forewarned that suffering a stroke is a risk of this surgery.
"I just wanted to live a normal life again," he says.
Normal life for Daly means 18 holes of golf at least once a week and a job as a commercial real estate broker. His Parkinson's - diagnosed when he was 40 - first caused shaking in both hands, then a limp so profound he could barely get around. As far as he knows, there have been no other cases of the disease in his family.
"I had wild problems with the medications," he recalls. "The doctors kept switching me until I had tried six different drugs. The side effects were as bad, or worse, than the symptoms of the disease. Surgery seemed to be the only thing left."
Daly was a particularly good candidate for pallidotomy - he is primarily affected on one side. "My left leg was the real problem," he says, "so I needed surgery on the right side of my brain."
He walks with no limp now, and although his hand still shakes a little, it is controlled reasonably well by medication. He was able to cut way down on the numbers of pills he needs, and says all his expectations have been met.
Did he find the surgery frightening? He laughs: "I'm the type that turns off the TV when a medical show comes on. I could never watch that stuff. "I still watch football and other sports, not ER. That part of my brain hasn't changed!"
Pallidotomy remains the last best hope for some Parkinson's patients suffering from severe tremors and other movement disorders, and from dyskinesia caused by heavy doses of medication. It is generally not effective for stiffness, rigidity or general slowness.
According to Lehman, there is currently a 3 percent chance of the surgery causing stroke, hemorrhage or death. His results are in line with national statistics: 79 percent of his patients have had good to excellent results; 15 percent have had modest outcomes; 4 percent have had a poor response - meaning the surgery did not help at all. One person was left with weakness on the left side.
Some insurers still consider pallidotomy experimental, and it is sometimes difficult to get approval for the surgery. As recently as two years ago, "People" magazine reported the case of a woman who had this procedure done at Emory University Hospital and took a $40,000 mortgage on her house to pay for it.
Is it still controversial? "I don't think so," says Lehman. "We understand what we can and can't do. What we can do is to give back mobility to many advanced Parkinson's patients who have lost it.
"Imagine having an active mind - no matter what your age - and being trapped in a body that doesn't move."
Stanley Gusky - diagnosed with Parkinson's disease in 1986 - watched the "20/20" segment on pallidotomy in 1995 and stored that memory away. "It was astounding," he says. A man whose Parkinson's caused him "to shake like a leaf" was shown having the brain surgery.
"When it was over, he just got up and walked off the operating table," Gusky says, almost incredulously.
A retired portrait photographer, he was diagnosed at age 58. He says that for about 10 years his only symptom was slight shaking, which caused him no significant problems.
Then, in September 1996, his condition worsened suddenly. "I couldn't stand," he says. "I couldn't get out of a chair by myself. I couldn't get into the car. I couldn't drive. I couldn't do much of anything."
For Gusky, who lives alone, the situation quickly became unmanageable. His memory, however, did not fail him. He called the American Parkinson's Association for the name of a physician able to do the "miraculous" procedure he had seen on TV.
His surgeon, Richard Lehman, performed a pallidotomy on him last February at Robert Wood Johnson University Hospital in New Brunswick. "You know, it worked the same for me as the man on '20/20,'" he says. "I'm right back in the ball park."
Gusky says he moves so well that he actually jumped from his bed during sleep and
chased a dream burglar. "Unfortunately, I also ran into my dresser and banged
my head," he laughs. Gusky needed seven stitches in his forehead - proof
that chasing dreams may not work all of the time.
Photos by Peter Byron
From debilitating tremors to the delicate control needed for sketching and painting - pallidotomy has enabled Mr. Gusky to get out his easel and begin doing watercolors again
Fall 1997 Table of Contents