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
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