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Here is the text of the Wall Street Journal article, which I scanned in so please forgive the errors. I hope this doesn't violate any copyright laws. --------------------------------------------------------------- The Wall Street Journal Wednesday, February 22, 1995 Page 1 ----- Hope From a Knife ----- Surgery for Parkinson's Brings Success Stories In Face of Skepticism ----- Patients Tell of Great Relief Operation to Cut A Spot Deep in the Brain ----- Rediscovering an Old Idea ----- By DAVID STIPP Staff Reporter of THE WALL STREET JOURNAL ----- Edward Weinberger has had Parkinson's disease for 13 years. His symptoms grew steadily more frequent and agonizing: painful periods of near paralysis and, at times, uncontrollable tremors. He tried drug after drug, with dwindling benefits. By last year, "I couldn't go out for more than a half hour without freezing up," says the 52-year-old New York investment banker. "I couldn t get out of bed by myself or turn over. I hadn't driven a car for 10 years. Sometimes I couldn't talk, and choked" on food. Then he saw an electrifying report by a Swedish neurosurgeon named Lauri Laitinen, who had threaded a probe deep into the brains of 38 Parkinson's patients and burned out a sliver of hyperactive neurons in an area called the pallidum. Some 92% had "complete or almost complete relief of rigidity" after this "pallidotomy" operation, while 81% had "excellent or good long-lasting tremor relief," said the 1992 report in the Journal of Neurosurgery. "A good test of the procedure," Dr. Laitinen wrote separately, "is to have the patient dance after surgery." ----- A Changed Man ----- Last fall, Mr. Weinberger flew to Stockholm for a pallidotomy by Dr. Laitinen. While in surgery - done under local anesthetic - "I went from a state of total rigidity to feeling all of a sudden released," Mr. Weinberger says. "Two days after. I was walking through the streets of Stockholm as a tourist. I could drive. I could go out for a drink and read at night. It was so miraculous, I didn't quite believe it." With little notice, hundreds of Parkinson 's patients have grasped at this surgical straw over the past two years - most, it appears, with startlingly good results. The procedure isn t a cure. It sometimes doesn't help, and when it does, symptoms are usually lessened rather than eradicated. It poses a risk of bleeding in the brain, which can paralyze or kill. But some doctors say pallidotomy is the most promising Parkinson's treatment since the 1960s advent of L-dopa, the drug that inspired the book and subsequent movie "Awakenings." "I was very, very skeptical when I first heard Laitinen's claims," says Patrick Kelly, a New York University neurosurgeon. "Even when r saw the results the first couple of times, I thought it was a fluke. But I've become a believer." Dr. Kelly has now performed about 30 pallidotomies himself. ----- Waiting List ----- Another neurosurgeon, Robert Iacono of Loma Linda University in California, has done almost 500 of the operations since hearing Dr. Laitinen s results: It s a real revolution," he contends. "I've seen dozens of wheelchair-bound patients become almost completely functional." Demand is exploding for the operation as stories about its benefits filter out through patients support groups. Some of the 20 or so U.S. medical centers that offer the surgery have yearlong waiting lists. Dozens of Americans have flown to Sweden for it, although Dr. Laitinen also has a backlog. Parkinson's disease afflicts roughly a million Americans. Some doctors say perhaps 100,000 of them currently would be good candidates for the surgery, generally the ones whose drugs are failing them but who don't yet have major brain damage from the disease. Many more patients, perhaps most people who get Parkinson's, may need the surgery as they lose benefit from drugs, proponents add. L-dopa generally becomes less effective over time and often itself causes uncontrollable limb spasms, facial tics and other problems. "AII [patients] fail eventually" to respond well to L-dopa, Dr. Kelly says. "Many of them could become candidates for pallidotomy. ----- Plenty of Doubters ----- Such thinking has ignited a momentous debate: On one side are neurosurgeons and hopeful patients who are convinced the surgery can help many; on the other are doctors and health-maintenance organizations saying it is a hyped, experimental treatment that doesn't warrant insurance coverage. (Many non-HMO insurers, including major Medicare contractors, do cover the $20,000-to-$40,000 operation.) Some people with Parkinson's say they quit their primary doctors in a huff after the surgery, adding that the physicians opposed it and sometimes later refused to acknowledge its benefits. "My neurologist was totally against it," says Lenore Rabjohns, a San Diego resident whose former HMO doesn't pay for the surgery. Paying out of pocket, she had Dr. Laitinen do the procedure on both sides of her brain - each side has a pallidum - giving "immense relief from Parkinson s symptoms, she says. When I went back to my neurologist, he said it was just a placebo effect." Neurologists, the main specialists for Parkinson s, tend to be the most skeptical. Their main tools are drugs, and they often regard surgeons as willing to cut first and ask questions later, "There's benefit to be derived from pallidotomy for very carefully selected patients," says Robert Feld- ----- Please Turn to Page A8, Column 1 ----- Hope From a Knife: Parkinson s Patients Claim Relief After Operation to Cur a Spot Deep in Brain ----- Continued From First Page ----- man, a neurologist at Boston University. But I wouldn t refer patients to Iacono. I don t think he s thinking critically. He s thinking surgically. Dr. Iacono, the operation's leading U.S. proponent, has become a lightning rod for skeptics. Some of his patients recently posted "testimonials" about benefits of the surgery on the Internet that "almost sound like snake oil," says Robert Fink, a neurosurgeon in Berkeley, Calif. , who doesn't do pallidotomies. Replies Dr. Iacono: The benefits of the surgery "are very dramatic, and neurologists just can't stand it. Their mildly positive statements about it are a form of apathy that s malignant. There are some good reasons for caution, though. What causes Parkinson s disease, first identified in 1817, remains a mystery, as does the precise mechanism of relief afforded by pallidotomies. The progressive disease often causes a confusing array of symptoms that can dramatically worsen or improve several times a day - providing fertile ground for oversold remedies and outright quackery. The average age of onset is 57, but some 30% of cases are diagnosed before age 50. Parkinson's typically starts with weakness in a limb or a slight hand. tremor, then worsens over five, 10 or 20 years, potentially ending in paralysis, dementia and early death. Parkinson's sufferers often have impassive faces, speak in soft monotones and walk with small, shuffling steps, hunched forward. They suffer insomnia, excruciating pain from rigid muscles, depression, nightmares and hallucinations from Parkinson's drugs, one of which is chemically similar to LSD. The disease inflicts both the inability to move and uncontrollable movement, from slight tremors to wild flopping that can dislocate joints. ----- Other Initiatives ----- Skeptics about pallidotomy often cite the false hopes raised in 1987 by a Mexico City surgeon named Ignacio Madrazo. He reported helping patients by transplanting into their brains cells from adult adrenal glands, which were thought to spew chemicals offsetting a neuronal deficiency. Patients rushed to get the transplants, but U.S. researchers in 1989 quashed the fad by reporting that careful evaluations of such patients showed minimal, short-lived benefits and a high rate of complications. (The effectiveness of another kind of brain transplant for Parkinson's disease - of brain tissue from aborted fetuses - isn't yet established. A study of the technique is expected to begin within weeks.) Surgery can cause a placebo effect. In a 1950s study, heart patients given sham artery bypass operations - incisions without bypasses - reported as much relief from the pain of angina as those who got bypasses. With Parkinson's, the risk of overestimating an operation's benefits is heightened by the subjective nature of many of the disease's symptoms, says Chicago neurologist Harold Klawans. "A patient's mood can affect how much he can do" in overcoming the disease's lack of muscle control, he says. While acknowledging that pallidotomies can help some people, the doubters say desperate patients may rush to get the operation from surgeons who don't have much experience doing it, with potentially disastrous results. Indeed, Dr. Laitinen reported that six of his first 38 pallidotomy patients had permanent blind spots in their visual fields after the surgery. The problem no longer occurs, he says, because he has figured out how to avoid damaging neurons that carry visual signals. The skeptics also note that before L-dopa, neurosurgeons often tried, with only limited success, to help by destroying parts of the pallidum. The idea arose from the observation that Parkinson s patients who had minor strokes sometimes lost their tremor. The strokes apparently had disabled misfiring neurons that were responsible for the quivering. ----- First Efforts ----- Beginning in the 1930s, surgeons tried to nick the same brain area hit by the beneficial strokes. The results were promising - and appalling. One pioneer, Russell Meyers, reported that after he cut nerve tracts near the pallidum in 38 patients, 25 had lessened Parkinson s symptoms but six died soon afterward. Later, surgeons improved the precision of probes, and did better. By destroying part of the pallidum, an area that helps control movement, they alleviated some of the muscle rigidity. But the surgery reportedly did little for tremor and the inability to make voluntary movements. Then researchers learned that the brains of Parkinson s patients were deficient in dopamine, a neurotransmitter that carries signals between neurons. In the late 1960s, they found that oral doses of a dopamine precursor, L-dopa, could ease the deficiency, mitigating symptoms. That killed off most surgery for the disease. Unknown to most doctors, however, a noted Swedish surgeon named Lars Leksell had found that by knocking out part of the pallidum not usually targeted, he could dramatically improve all Parkinson s symptoms. The late Dr. Leksell didn't publish his finding "because he believed that a neurosurgeon was biased in reporting his own results, says Dr. Laitinen, one of his proteges. Less old- fashioned, Dr. Laitinen issued his startling 1992 report on the procedure after trying it on 38 patients who were failing on L-dopa. "Neurologists were extremely surprised by the results, says Dr. Laitenen. He says he has now performed about 350 pallidotomies with similar results. Younger patients do particularly well. We recently checked the first 10 patients" who got pallidotomies in 1985 and 1986, he says, "and nine of them are doing well." ----- How It Might Work ----- Medical textbooks say brain surgery can help the tremor of Parkinson s but not the freezing. Rethinking that in light of the new pallidotomy results, scientists theorize that lack of dopamine incites furious firing by certain neurons that normally help suppress undesired movement. That causes Parkinson's patients to freeze up. Pallidotomy appears to cut these overactive "inhibitory" brain pathways, as well as ones that induce tremors. But the jury is still out on crucial issues: how effective the surgery is, how much risk it poses, precisely what part of the pallidum to destroy for maximum benefit and how long the benefit lasts. An Emory University team in Atlanta has begun a federally funded study to answer these questions, but its results aren't expected for years. A report on 126 patients given pallidotomies by Dr. Iacono is expected to be published soon. Meanwhile, patients are getting some answers via the Internet and support groups. After flying to Stockholm for a pallidotomy, Alan Bonander, of San Ramon, Calif., recently produced a videotape on the surgery that is now circulating in the Parkinson's-disease network. In a moving segment, Mr. Bonander is shown with immobile limbs just before the surgery. then flexing his limbs with fluid speed just after - calling to mind the "Wizard of Oz" scene in which Dorothy oils the rusted tin man. Mr. Bonander say he still has some problems with tremor and rigidity, but "my quality of life has improved. ----- Outcomes Research ----- David Devor, a Jerusalem resident whose wife has Parkinson's, recently posted on the Internet what may be the most comprehensive report so far on pallidotomy outcomes. After being advised against the surgery by his wife's doctor, he asked Dr. Iacono for evidence that it works. "I heard a lot of neurologists call him a charlatan," Mr. Devor says. Dr. Iacono responded by sending him the names of all his pallidotomy patients from late 1993 to late 1994. Running up a $1,000 phone bill, Mr. Devor interviewed 113 of the patients or their spouses. Nine said they hadn't been helped, including five who said they got worse, Mr. Devor reported; but about 80% said the surgery gave them "marked improvement," with symptoms lessened by 20% to 100%. Many described the surgery with words like "miraculous," he added in the report. Most typical were the expressions of relief to be again able to turn over in bed, shower and dress alone, eat normally . . ., to walk, write and work normally or almost normally, and even drive a car." Mr. Devor concluded by asking, "Would I fly in a shuttle that had a 92% reliability of getting me some distance away from hell on earth, 8% of doing me some harm and well under 1% of killing me?" His wife, Aviva, is scheduled to have a pallidotomy next week.