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/cat:L/pri:R/sld:K/por:3/for:5/slu:BC-PARKINSONS:DE_HEALTH lifestyle knigb @Body Text: <B>BC-PARKINSONS:DE - health, lifestyle<P> <B>For many with Parkinson's disease, grueling brain surgery offers hope<P> (PHOTO) (HAS TRIM) By Patricia Anstett Knight-Ridder Newspapers (KRT) DETROIT - Jim Bence has spent countless hours wondering: Was the arduous brain operation he underwent really worth it? Bence, a 46-year-old Fenton, Mich., man with two young sons, still has doubts three months after the surgery, particularly if he concentrates on what he still can't do because of Parkinson's disease. He can't return to his sound system business, play softball or dress himself quickly. He still can't be counted on to drive his son to soccer practice. He and his wife, Ethel, had hoped for more, he acknowledges. In that way, his feelings are no different than those of countless others who undergo medical treatments that produce gains, but not cures or even dramatic improvements. "No matter how realistic you are, you still can't help but hope for a miracle," Bence says. Bence knows that he is better because of the surgery. His body doesn't thrash about the way the way it used to. His right hand doesn't shake as long. His days are more predictable. "It took me a while to appreciate the benefits, but I now see that there definitely have been some," Bence says. Two years ago, after national TV programs aired astonishing footage of patients with Parkinson's disease who once used wheelchairs walking out of operating rooms after brain surgery, people around the country clamored for information about pallidotomy, a nearly 60-year-old operation improved with new brain-mapping techniques. Now, a more realistic picture of the surgery's benefits and shortcomings is emerging, as patients like Bence tell their stories and specialists reported this month at two medical meetings on the nation's first carefully recorded studies. Clearly, improvements can be dramatic. But more typically, symptoms are lessened but not eliminated - usually enough to make the emotionally stressful and possibly risky procedure worthwhile, Bence and other patients say. Sometimes, gains disappear in two years, or symptoms worsen after surgery. In rare cases, patients have been blinded or paralyzed. "I really can't tell the results; I think they're mixed," says Joseph Grano, a 53-year-old Wayne State University law professor who had the surgery last August. The right side of his body is a little stronger, he says, but his voice, slowed and made faint by Parkinson's disease, got so much weaker after the surgery that he may have to give up teaching. He's now on a disability leave. But palliodotomy "has given me another life," says Robert Perry, 57, a disabled plant manager for General Motors' truck and bus plant in Pontiac, Mich. Perry's voice is stronger and he has fewer of the spasms that he suffered for as much as 10 hours a day. He's driving again and can do most activities, though he still has to pace himself. Perry considers the effects of surgery so significant that friends now help him celebrate two birthdays each year. One marks his actual day of birth; the other celebrates the day of his operation. Perry, Grano and Bence all underwent pallidotomy at a program at Detroit's Henry Ford and Sinai hospitals. It uses a technique called micro-electrode recording. "Virtually everyone" has improvements in at least one or more symptoms, says Dr. Peter LeWitt, Bence's doctor and a Sinai neurologist. Pallidotomy mostly improves frozen, slowed and rigid movements, not tremors and speech problems, adds Dr. Fred Junn, a Ford neurosurgeon. "In the last year, we've realized the limitations of pallidotomy more than ever before," Junn says. "But it can be a useful treatment." "What hasn't panned out" is surgery to improve problems with walking, one of the most common Parkinson symptoms, Junn says. Doctors stress the need to carefully select patients for surgery. As many as 25 percent of patients "are incorrectly diagnosed" as being likely to benefit from it, says Dr. Roy Bakay, a neurosurgeon at Atlanta's Emory University School of Medicine. He summarized the success rates of Emory's program, one of the nation's biggest, at a recent meeting in Denver of the American Association of Neurological Surgeons: Patients who do best with the surgery are ones who show some improvement prior to surgery with the medicine levodopa, the generic name of Sinemet, the most commonly used Parkinson's drug. It also appears most beneficial in younger people or ones whose symptoms mostly occur on one side. There's also some evidence that the surgery may improve memory, according to Dawn Bowers, a University of Florida researcher who presented a study at a recent American Academy of Neurology meeting in Boston. But other studies have not found this improvement, she says, and more study is needed to determine if the surgery brings subtler gains in memory. The procedure itself is highly complex and technical. Patients are only lightly sedated for the procedure so they can tell doctors if they feel any unusual sensation. The surgery itself, which takes four to eight hours, involves threading a thin electrical tool into the brain to burn away a sliver of hyperactive nerve cells that may cause Parkinson's symptoms. The tip of the electrode is so small it is barely visible, "as thin as a piece of hair," Junn says. But it fits into a tool that looks remarkably like a household drill - a high-tech Black & Decker tool for the brain. Typically, the operation is done on one side of the brain, to minimize complications. But that means patients usually only can achieve improvements on one side of the body at a time. "It's hard to give functional improvement" from surgery on one side, Junn says. He awaits federal approval of a new battery-powered device that is implanted in the brain. It would give doctors another option to performing pallidotomy on the other side of the brain. Another technique called micro-electrode recording used at Emory, Ford and some other centers improves the ability to pinpoint where to place the electrical probes, some doctors believe. It records the sound of nerve cells as they fire, to help doctors know if they've touched the right area of hyperactive brain activity. The surgery costs about $15,000 to $18,000; insurance usually covers the procedure. Many centers have not purchased the microelectrode recording equipment, Emory's Bakay says, because it costs more than $120,000 and requires a physicist to operate it. As much as 80 to 90 percent of the time, the globus pallidus, the region where neurosurgeons operate, is exactly where it should be, Bakay says. But even a few fractions of an inch can make a difference between success and failure. Yet even with the equipment, doctors may need to insert the electrode three or more times. That's because no one's anatomy is exactly standard. (EDITORS: STORY CAN END HERE) Prior to surgery, doctors bolt a metal frame into a person's skull, inserting long screws at four separate points and two rods into each ear. Bence had to have that done five times because the device kept shifting. Then technicians had a hard time locking him into into a magnetic resonance imaging (MRI) machine, used to get X-ray like pictures of the brain's interior. Bence was clamped into the confining MRI machine five times. In the operation itself, Junn made five separate 3/4-inch incisions into the top right of Bence's forehead before equipment indicated he had found the precise area of hyperactive cells. When he found the correct spot, the tiny electrical probe Junn held made a sound like radio static. "These are abnormally reactive neurons," Junn told Bence. "They are constantly firing." He told Bence "if something is bothering you, we want you to yell out. ... We'll stop it the minute you feel it." At one point Bence said, "I just had my first weird feeling, Doc. Like a 9-volt shot of electrical current." He said he felt the current in his jaw and face - "it made my lip twitch - but added, "I can handle it. It's like a root canal." Near the end of the 10-hour ordeal, Bence was awake but tense and worried-looking. He joked less with Jeanne Draggoo, an experienced nurse who calmed Bence with small talk and attention. To make sure the procedure hasn't sliced a person's optic nerve, causing blindness, doctors shine a flashlight and ask patients to report precisely where they see the light. "Just being off an eighth to a quarter of an inch can make a difference between successful surgery and blindness," Junn says. He also asked Bence to wiggle his toes and puff out breath to make sure he didn't disrupt any signals the brain sends to the rest of the body. "We're finished," Junn told him. Bence, who held a picture of his two sons in his lap throughout the procedure, reacted in disbelief. Then he cries. "You tell my father-in-law I didn't chicken out." A nagging cold slowed Bence's recovery. "I've yet to notice the differences I'm looking for," he said a month after his surgery. His wife, Ethel, a childhood sweetheart, admitted she "went into a depression" when she didn't see better results. "I expected more," she said. She had hoped Bence might improve enough to help her on a more reliable basis with their two boys, 9 and 3. Two months later, Bence still is struggling. He is president of the Flint-area Parkinson's support group of the Michigan Parkinson's Foundation. The group was eager to see him in March to see how he fared. But this wasn't a good day for Bence. Coming down the hall, late for the meeting, Bence drops papers and slows to a halt. He confides that it took him nearly 1 1/2 hours to dress, and he didn't feel comfortable driving so he had to ask his father-in-law for a ride. "I just got up on the wrong side of the bed, as we say in the world of Parkinson's," he says. Bence's improvements are on his left side. The Parkinson's medicine he continues to take six times a day controls symptoms on his right, though many days the medicine is slow to kick in or his symptoms worsen if he eats too much protein, which interferes with the medicine. By three months after the operation, Bence is feeling better. He's joking as he sits back to show a reporter a tape of himself two years ago. It shows him in cutoffs and a T-shirt, sweaty and writhing in a chair in his living room. Just seeing the image makes him relax. He knows his life isn't easy. It may never be. But he's better now. "He's active, when he's on," Ethel Bence says, using the term she and Jim use to describe how he feels when his medicine is working. "He can go out and shovel the walk or mow the lawn" and "he even can do handstands." He also served as a spokesman for Parkinson's Awareness Month in April and is helping to organize a May 17 walk in his community. Bence, a self-described workaholic who once ran his own electrical business, wants to write a book about Parkinson's and play more with his sons. "I want them to know me as a dad, not an invalid." And he wants to tell people about Parkinson's disease. "People just don't understand it," he says. X X X PHOTO will be available from KRT Photo Service, 202-383-6099. X X X (c) 1997, Detroit Free Press. Visit the Freep, the World Wide Web site of the Detroit Free Press, at http://www.freep.com. Distributed by Knight-Ridder/Tribune Information Services. CP 0629ES 02-05