TO: Subscribers of Parkinsn List
I am attaching a downloaded copy of
today's New York Times article on pallidotomy
surgery for those who are interested in
this procedure.
Very truly yours,
MICHAEL H. COLE
P. O. Box 1288
Charlottesville, VA 22902
Telephone: (804) 977-2547
Facsimile: (804) 980-2222
--------------- ARTICLE BEGINS NOW ---------------
03/16: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."
Transmitted: 95-03-15 23:28:53 EST
