Fellow Listers: As I continue to get e-mails from folks looking for this week's New York Times pallidotomy article (even tho it's been posted to the list several times), I thought I'd try posting again to make absolutely certain that everyone has a chance to read, digest and react to this important article about this critical subject: >TEXT FOLLOWS: > >MANY PARKINSON'S SUFFERERS GAMBLE ON SURGERY THAT OFFERS HOPE BUT HIGH >RISK > >By GINA KOLATA > >c.1995 N.Y. Times News Service > >A surgical treatment for Parkinson's disease has dramatically helped some >patients with the debilitating disease, but, unknown to many eager and >desperate Parkinson's sufferers, the surgery has left others paralyzed, >blind, demented or comatose. > >The surgery is pallidotomy, destruction of minute areas of the brain that >control movement. It is done in the hope of quelling the rigidity, the >jerking motions and the freezing in place that plague people with >Parkinson's. > >Most medical experts believe that pallidotomies can help some patients, >relieving symptoms instantly, if only temporarily. But the operation's >success has been hard to quantify. > >Although many patients have reported dramatic improvement in their symptoms, >others have gone home apparently feeling fine, only to develop serious side >effects over the next days. In many, the problem was caused by a brain >hemorrhage after the operation, leading to paralysis or blindness. > >So far, the information, both positive and negative, is mostly anecdotal. Dr. >Mahlon DeLong of Emory University in Atlanta, who has performed the operation >on more than 60 patients, said, "If I had the problem that many of these >patients have I would consider a pallidotomy." > >He added, "At the current time, this is probably the best thing we have for >patients who have not responded to adequate trials of medication." > >Although the Food and Drug Administration requires that drugs be proved safe >and effective before they go into widespread use, there are no such >requirements for surgery. > >There is also no central registry of surgeons doing the operation, but >hundreds of the operations have been performed, and many major medical >centers contacted say they are now offering it. And, with few other options, >even those patients who know the risk often decide to take the chance. > >Kim Seidman, director of the West Coast Regional Office of the American >Parkinson's Disease Association, said her organization had been inundated >with request for the surgery but she said she knew of about 15 patients who >were much worse off after the operation. > >One neurologist who is just beginning to do the surgery, Dr. Matthias Kurth, >associate director of the movement disorders clinic at the Barrow >Neurological Institute in Phoenix, said his group had been getting two or >three calls an hour from patients wanting the operation. > >Dr. William Langston, a neurologist who is director of the Parkinson's >Institute in Sunnyvale, Calif., said: > >"The intensity is quite hot. There is an air of almost hysteria, and I'm >starting to see panic in the medical community. There's a feeling that if we >don't get on board, we'll be left behind." > >Dr. William Weiner, who directs the movement disorders clinic at the >University of Miami and is clinical director for the National Parkinson's >Foundation, said that it is all too easy for surgeons to climb on this >particular bandwagon. "Anyone trained in neurosurgery should be able to do >it," he said, speaking of the operation. > >Doctors say the huge demand for the operation, which cost from $20,000 to >$40,000, depending on where it is performed, is understandable. Parkinson's >disease, a degenerative brain disease, afflicts at least 500,000 Americans >and there is no good treatment. > >In addition to jerking, rigidity and the freezing in place for minutes or >longer, those with Parkinson's suffer tremors, stiffness and excruciating >muscle cramps. > >Although drugs can at first alleviate the symptoms, they eventually lose >their effectiveness. And they can also cause disabling side effects, like >wild jerky movements and hallucinations. Inevitably, the disease progresses >until patients are unable to move or even swallow. > >Parkinson's disease occurs when brain cells of the substantia nigra, a small >black area of the brain, die. These cells produce a neurotransmitter, >dopamine. > >Without dopamine, researchers hypothesize, there is nothing to inhibit the >functioning of brain cells in the nearby globus pallidus, which spew out the >chemical signals that produce the abnormal movements that are the hallmark of >Parkinson's. > >The surgery was first attempted in the 1940s with mixed success. When the >first drug, L-dopa, was introduced to treat Parkinson's disease, the surgery >was abandoned. But recently, surgeons frustrated with the limitations of >L-dopa and other drugs, applied the much more delicate current surgical >techniques to the same procedure. > >Generally, surgeons operate on only one side of the brain, but for unknown >reasons both sides of the body are affected. > >In 1990, Dr. DeLong reported that the operation alleviated the symptoms of >Parkinson's disease in monkeys. Soon afterward, he began performing the >operation on patients. > >A second experimental surgery, implanting fetal substantia nigra cells in the >brain, is being tested at a few medical centers but, without the promise of >immediate and dramatic relief of symptoms, it has not attracted the same >attention as pallidotomies. > > >THE OPERATION: Rolling The Dice > >Terrie Whitling, 40, of Atlanta, who had the operation in October 1993, is >one of many patients who say the operation restored her to life. > >She volunteered to speak publicly about her experience and is now on a >speaking tour in Texas with a friend who she said also had a very successful >pallidotomy. The two of them, both patients of DeLong, are not paid for the >speeches. > >Ms. Whitling described her condition before her surgery: "I was disabled, I >needed a wheelchair to go beyond 30 feet. My medication was so unpredictable >that I never knew from one moment to the next whether it was going to work >or, if it did, to what extent." > >After her operation, she said, she was so much better that she could play >tennis again. > >"I still have Parkinson's disease," she said. "I still take medications. I >still have good times and bad. But the good times are 100 percent better than >they were even 10 years ago and the bad times are not a fraction of what they >used to be." > >Despite such testimonies, said Dr. Ira Shoulson, a professor of neurology at >the University of Rochester, in upstate New York, the jury on pallidotomies >is very much out. "We don't really have any systematically collected >information to address the important clinical question of how good it is," he >said. > >And when the surgery goes wrong, when a surgeon misses the tiny target or >when the operation induces a hemorrhage, the result can be disaster. > >Sylvia Sellarole, a 60-year-old woman who lives in Redland, Calif., starts to >cry when she tells what happened to her. She had had Parkinson's disease for >five years when she went for her operation. Her main problem, she said, was >"this awful slowness of movement." > >Still relatively unimpaired, she drove to the Loma Linda University Medical >Center, where she had worked as a nurse, for her surgery on Sept. 9, 1993. >The surgery was performed by Dr. Robert P. Iacono of Loma Linda, who has done >500 pallidotomies, far more than anyone else in the country. > >As is customary, Ms. Sellarole was awake during the surgery, and when it was >over, she was elated. "I walked out of the operating room, taking large >steps," she said. "I was so excited. I thought it was a complete success." > >The next morning, when she tried to get up from her hospital bed, she fell. >"I ended up flat on my face, paralyzed on my left side," she said. She said >that she later learned that that Iacono had destroyed the wrong area of her >brain, so that not only was her Parkinson's disease unaffected but she could >no longer walk or care for herself. > >Langston of the Parkinson's Institute, based on a description provided to >him, said the delayed effects were likely caused by a hemorrhage that >occurred after the operation. The left side of her body remains weak and >nearly paralyzed even after extensive rehabilitation. > >Now, Ms. Sellarole said, she can no longer work, and her house is in >foreclosure. > >Iacono said, however, that although he did destroy too large an area in Ms. >Sellarole's brain and that although she did have weakness on her left side, >her real problem was that she probably did not have Parkinson's disease. >Instead, he said, she probably had multiple sclerosis. > >There is no definitive test for Parkinson's or for multiple sclerosis. But >neurologists said that the two diseases have such different symptoms that it >would inconceivable that they could be confused. > >Some surgeons say that cases like Ms. Sellarole's are very rare. But other >medical experts say that there is no way to know how widespread the problems >have been. There has been almost no effort to scientifically evaluate the >long-term effects of the operation. > > >THE EMOTIONS: Wishful Thinking Clouds Results > >Complicating the problem of evaluating the surgery is the fact that there can >be an enormously strong effect from the power of suggestion with Parkinson's >disease treatments, making it difficult to say which effects are due to >surgery and which to wishful thinking, Langston explained. > >Moreover, Langston said, the symptoms of Parkinson's disease can vary greatly >from day to day, and are often better when patients are in a good mood. These >factors make patients even more vulnerable to the power of suggestion. > >Langston said that this was illustrated in a study a few years ago of a new >drug for Parkinson's disease. Half the patients received a dummy pill, or >placebo. But, he said, most of them said they were much better. "The placebo >effect lasted two years," he said. > >Another problem is that few doctors follow their patients very long after the >surgery, and even when they do, doctors and patients sometimes have very >different perceptions of the long-term effects of their pallidotomies. > >For example, Iacono said of his patients, "Only 5 to 10 percent have a >decrement or it didn't work or they had a complication." He discounts placebo >effects. "It's very hard to fool Parkinson's patients," he said. > >Iacono literally has a fan club of satisfied patients. He said he does an >average of 5 operations a week and has 350 patients on a waiting list. > >But Ms. Sellarole is not alone in reporting negative effects. Paul Rothstein >of Thousand Palms, Calif., can no longer speak after his operation, which was >performed by Iacono, so he wrote a note that his wife, Jane, read over the >telephone. > >In it, Rothstein said, "I probably had a postoperative bleed and there was >little followup to find the reasons for the symptoms I exhibited - shuffling, >poor balance, and the loss of my ability to speak." The symptoms, he added, >"showed up about five days after the pallidotomy I had at Loma Linda." > >Five patients being treated at the University of Rochester flew to Loma Linda >for the surgery. Dr. Joanne Wocjcieszek, a fellow in neurology at the >university, described the aftermath: > >One patient had visual problems afterward, a common side effect because the >visual nerve is within a millimeter of the area of the palladium that >surgeons aim to destroy. > >Another had a brain hemorrhage, followed by a coma. She is now at home with >no relief of the Parkinson's disease symptoms, and with partial paralysis and >seizures. > >A third patient's symptoms returned a month after the operation. A fourth >came back from Loma Linda with impaired vision, slurred speech, weakness on >the left side and with no relief of Parkinson's symptoms. A fifth had a brain >hemorrhage and can no longer walk. > >Iacono acknowledged that some of his patients did have complications and that >the descriptions of the patients from Rochester were fundamentally correct. > >As for Rothstein, Iacono said, he probably had an atypical Parkinson's >disease that does not respond to pallidotomy. "I have seen him five or six >times in the clinic and I don't understand it. He hasn't improved," Dr. >Iacono said. > >Kurth of the Barrow Neurological Institute in Arizona also had a patient who >went to Loma Linda. The patient returned, he said, "demented, confused, and >agitated." Kurth added, "He couldn't walk and his Parkinson's was actually >worse then before he left." > >Kurth said he himself has done four pallidotomies since then but the patients >were not helped. "We didn't get the outstanding results that other people >have gotten. That's true of some of my other colleagues as well." > >Iacono said that Kurth's patient probably had a bad reaction to a drug, >Haldol, which he received after his surgery when he became agitated. He said >he thought the man had gotten better. > >THE OUTLOOK: Facts to Come, Patients Proceed > >Dr. Anthony Lang, a neurologist who directs the movement disorders clinic at >Toronto Hospital, said that doctors can be profoundly misled if they do not >follow their patients carefully. > >"We had a patient who climbed off the table" after a pallidotomy "and danced >with my nurse," Lang said. "He did wonderfully the first day after the >operation, and he is still a little bit better than before. But, in fact, >looking at him today, you certainly would not know he had a remarkable >response." > >DeLong said his group is trying assess the surgery scientifically. "We are >doing careful evaluations before the surgery," he said, "and then follow the >patients after the surgery so we can study the outcome over a long period of >time." > >He said he was committed to following 84 patients for four years and hopes to >follow them even longer. "This study is just getting underway," he said. > >The real problem, Langston said, is that patients often do not want to hear >about the uncertainties surrounding pallidotomies. "We look like the >heavies," he said. "It's scary." > Fred A. Schneyer Tallahassee, Fl [log in to unmask] [log in to unmask] [log in to unmask]