I did not receive the last half of Dr. Kelly's posting on this issue
(maybe a problem with my mail reader). I asked him for a copy of his
complete text, which I am re-posting on the net in case others had the
same difficulty.
 
>Margaret
>
>Sorry I didn't respond earlier-I was in Europe.  Here is a full text
>version of my response to the NYT.
>
> >From kelly Thu Mar 16 21:06:00 1995
> To: [log in to unmask]
> Subject: Re: New York Times Article 3/16/95
> Content-Length: 28353
> Status: RO
> X-Lines: 469
>
> To Listmembers:
>
> Friends:
>
>  Ordinarily I would not get into a debate over inaccuracies published in a
 newspaper. After all, it happens all of the time. However, the coverage of
 Pallidotomy in the recent New York Times article (3/16/95) was so distorted and
 unfair that it is unconsc> ionable that I feel that I should comment even
 though it may seem self-serving since I do Pallidotomies within a carefully
 controlled research effort at New York University Medical Center. Please be
 assured that I could stop doing pallidotomies tomarrow (> they comprise less
 than 10 percent of my practice) and would have plenty of work-brain tumors,
 thalamotomies and other general neurosurgical procedures. I have no real vested
 interest in the procedure except that I feel that it's a good operation in
 selec> ted patients with Parkinson's disease.
>
> However, this reporter has done a major disservice to the community of people
 suffering from Parkinson's disease in a vicious attempt to slander a member of
 the medical community who has done much more good than harm. In the process she
 has destroyed hope>  for many who wish for a better life but are now scared out
 of their wits of having a surgery which could help them. She has created
 needless anxiety in those who plan on having the operation.
>
> First, some of the points raised in the article are true but incomplete. All
 surgery (including pallidotomy) has risks. In addition a good result cannot be
 expected in each and every individual. This is true for any surgical procedure
 one can name. Dr. Ia> conno has done over 500 pallidotomies and as in any
 surgical series a certain percentage of patients may be worse off
 (complications). It seems as if the New York Times has found a few of
 them-that's not surprising in a large series such as his. Had they > wanted to
 do a marginally adequate job of reporting they would have found many more
 individuals who had benefitted from the procedure than had been hurt by it.
>
> There is no doubt about the fact that every patient who undergoes any medical
 procedure; surgery, getting intravenous contrast for a diagnostic test or even
 filling a prescription for medication assumes a risk. Obviously, the doctor and
 the patient hope f> or the desired benefit; but there is no way to predict if a
 patient will have an adverse effect (if there were, we wouldn't do it). All of
 us are human (even if some of us have an MD after our name) and none of would
 consciously do harm to another human b> eing. Nonetheless, as a neurosurgeon, I
 freely admit that some of the people that I've operated upon are worse off
 after my procedures. If I had only known  prior to surgery that this person or
 that would suffer a complication in my hands, I wouldn't have>  touched them.
>
> But every surgery has a benefit to risk ratio; with thalamotomy in Parkinson's
 disease there is a 90% chance that we'll stop tremor-a 4.8 percent chance that
 the patient will have some side effect or complication. With Pallidotomy-a very
 similar procedure> - the benefit is harder to measure (tremor is either there
 or it isn't; pronouncement of improvement in rigidity and bradykinesia relies
 on the subjective impressions of the patient and examiner). Nevertheless, with
 pallidotomy the benefit appears to be a> bout 80% and the risk of complications
 with a carefully done proceure about 5%. For example if Dr Iaconno performed
 500 pallidotomies, there would be about 25 people who are worse off by some
 complication or other, but 400 people who derived benefit and n> ow think he's
 a great guy - even though the New York Times in a feeble effort to sell
 newspapers finds it in their interest not to agree.
>
> What about the effects of the procedure not lasting? Some patients have had
 only short term benefit to pallidotomy. What the NYT article didn't say is that
 many of Laitinen's patients were found to have derived long term benefit.
 Please understand this. P> arkinson's disease is a progressive disease whose
 course is unaltered by treatment. The best a physician can do is to create
 plateaus in the patient's disability by palliating the symptoms causing that
 disability. All initially effective therapy (L-DOPA, > Sinamet, thalamotomy,
 pallidotomy) results in "temporary" improvement. But temporary can be months or
 many years until the disease catches up again. As I'm sure all of you
 know-Parkinson's disease progresses faster in some people than in others.
>
> Now with the above as background, I hope that the members of the list will
 indulge me as I take this silly "reporter" and her article apart: (My comments
 will be in CAPS, those following the >represent the original text of the
 article)
>
> >03/16:MANY PARKINSON'S SUFFERERS GAMBLE ON SURGERY THAT OFFERS HOPE BUT HIGH
> >RISK
> >By GINA KOLATA
>
> IF THIS WOMAN FEELS THAT 5% IS HIGH RISK, I HOPE SHE NEVER GETS A BRAIN TUMOR
>
>
>
> >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.
>
> THIS IMPLIES THAT THE PERCENTAGE OF RISK IS MUCH HIGHER THAN IT IS. ANY BRAIN
 SURGERY HAS A CHANCE OF PRODUCING PARALYSIS COMA, VISUAL FIELD LOSS OR EVEN
 DEATH (SHE DIDN'T MENTION THAT ONE). BY THE WAY, ITS NOT BLINDNESS BUT
 HEMIANOPSIA-LOSS OF PART OF TH> E VISUAL FIELD.
>
>
> >
> >The surgery is pallidotomy, destruction of minute areas of the brain that
> c>ontrol 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.
>
>
>  RIDICULOUS OVERSIMPLIFICATION WHICH I WON'T COMMENT ON
>
>
> 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.
>
>
> IT'S NOT FAIR TO IMPLY THAT PATIENTS WHO ARE IMPROVED ARE ONLY IMPROVED
 TEMPORARILY IN A TONE WHICH IMPLIES A FEW DAYS OR WEEKS. AND WHO ARE THESE
 "EXPERTS"? WHY DOESN'T SHE LIST THEIR NAMES?
>
>
> >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.
>
>
> THE INCIDENCE OF SUBCORTICAL HEMORRHAGE FOLLOWING A RADIOFREQUENCY LESION IS
 SMALL-LESS THAN 1%. I DON'T KNOW WHERE SHE GETS "MANY". NO DOUBT SOME SWELLING
 CAN DEVELOP AROUND A LESION WHICH MAY CAUSE SOME TEMPORARY SIDE EFFECTS IN SOME
 INDIVIDUALS.
>
>
> >So far, the information, both positive and negative, is mostly anecdotal
>
>
>
> AS MEMBERS OF THIS LIST ARE AWARE, THERE ARE PAPERS NOW IN THE PUBLISHED
 LITERATURE WHICH RELATE CONTEMPORARY EXPERIENCE WITH PALLIDOTOMY
>
>
> > 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."
>
>
> WITH ALL DUE RESPECTS TO DR DELONG, I SHOULD POINT OUT THAT HE IS A
 NEUROLOGIST. THE REPORTER SHOULD HAVE BEEN SOPHISTICATED ENOUGH TO KNOW THAT
 NEUROLOGISTS DON'T DO SURGERY, CANNOT DO SURGERY AND DON'T HAVE HOSPITAL
 PRIVILEDGES TO DO SURGERY. DR ROY BAK> AY IS THE SURGEON AND DR DELONG WORKS
 WITH HIM AND PROVIDES HIS ELECTROPHYSIOLOGICAL EXPERTISE. NONETHELESS, I AGREE
 WITH DR DELONGS COMMENT HERE.
>
>
> >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."
>
> AGAIN, HE'S RIGHT (IN MY OPINION).
>
>
>
> >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.
>
>
>
> IF SHE THINKS THAT THE FDA IS OUR SAVIOUR HERE, SHE DOESN'T HAVE THE FOGGIEST
 NOTION ABOUT THE COMPETENCE OF THE FDA. DRUG COMPANIES SPEND MILLIONS TRYING TO
 GET DRUGS AND DEVICES THROUGH THIS BUREACRATIC MORASS. HAVE YOU EVER HEARD OF
 THE "ORPHAN DRUG"? > THIS IS ONE WHERE THE PROFIT MARGIN IS SO LOW THAT IT'S
 NOT "COST EFFECTIVE" FOR A DRUG COMPANY TO BOTHER WITH THE HASSLE AND EXPENSE
 OF DEALING WITH  THE FDA. NO SURGEON OR SURGICAL GROUP WOULD EVER BE ABLE TO
 AFFORD TO DO IT FOR A SURGICAL PROCEDURE.
>
> BESIDES, PALLIDOTOMY IS NOT A NEW OPERATION - IT'S MORE THAN 30 YEARS OLD.
 DOES ANYONE REMEMBER DR IRVING COOPER, JOHN GILLINGHAM (EDINBOROUGH), GERARD
 GUIOT (PARIS) AND MANY OTHER SURGEONS WHO DID PALLIDOTOMIES IN THE 1960'S AS
 WELL AS LARS LEKSELL (STOC> KHOLM) WHO DESCRIBED, OVER 30 YEARS AGO, THE EXACT
 PALLIDOTOMY PROCEDURE WHICH LAURI LAITINEN FREELY ADMITS TO RESURRECTING.
>
>
>
> >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.
>
>
> PATIENTS ALWAYS TAKE THE CHANCE KNOWING THE RISKS. IT'S A PRINCIPLE CALLED
 INFORMED CONSENT. WE HAVE TO SCARE THE HELL OUT OF EVERY PREOP PATIENT BY
 INNUMERATING ALL OF THE POSSIBLE RISKS WHICH MIGHT HAPPEN TO ACCOUNT FOR THE
 FEW PERCENT WHO WILL HAVE COM> PLICATIONS AFTER THE PROCEDURE.
>
>
> >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.
>
>
> YES, SURGERY HAS RISKS.
>
>
> >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.
>
>
> NEUROLOGISTS DON'T DO THIS SURGERY-NEUROSURGEONS DO. NONETHELESS, I HAVE A
 QUESTION ABOUT THIS FELLOW-SEE BELOW.
>
>
> >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."
>
>
> I THINK THAT THE TERMS PANIC AND HYSTERIA ARE OVERSTATING THINGS A LITTLE BIT
>
>
> >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.
>
>
>
> IN FACT, PALLIDOTOMY IS COMPLICATED AND VERY DIFFERENT FROM STANDARD
 NEUROSURGERY. IT REQUIRES SPECIAL EXPERTISE IN FUNCTIONAL STEREOTACTIC
 TECHNIQUES, BASAL GANGLIA NEUROANATOMY AND NEUROPHYSILOGY. UNTIL VERY RECENTLY,
 ONLY VERY FEW NEUROSURGICAL CENTERS>  PROVIDED ANY TRAINING IN FUNCTIONAL
 NEUROSURGERY FOR THEIR RESIDENTS.
>
>
> >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.
>
>
> THE NUMBER OF AMERICAN'S APPROACES 1 MILLION. THERE ARE MANY TREATMENTS-JUST
 NO CURE AS YET.
>
>
> 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.
>
>
> ALL OF THE ABOVE IS BASICALLY CORRECT
>
>
> >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.
>
>
> I DON'T THINK THAT DR DELONG IS TRYING TO IMPLY THAT HE DEVELOPED THE
 OPERATION. LARS LEKSELL DEVELOPED THIS PROCEDURE OVER 30 YEARS AGO. (SEE
 SVENILLSON et al ACTA PSYCHIATR NEUROL SCAND 35:358-377,1960.) HERE THE RESULTS
 OF LEKSELLS PROCEDURES PERFORMED>  IN THE LATE 1950'S WERE CAREFULLY ANALYSED
 (QUOTED BY LAITINEN) AND 19 OF 20 PATIENTS WITH A POSTEROVENTRAL PALLIDOTOMY
 HAD DERIVED A "GOOD LONG LASTING RESULT".
>
>
> >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.
>
>
> AND IT SURE DID ATTRACT THE ATTENTION OF RIGHT-TO-LIFE GROUPS WHO EFFECTIVELY
 COERCED THE GOVERNMENTINTO STOPPING FEDERAL FUNDING FOR FETAL CELL RESEARCH.
 THIS POLICY WAS MODIFIED ONLY VERY RECENTLY.
>
>
> >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.
>
>
>
> HAD THIS REPORTER DONE HER HOMEWORK SHE WOULD HAVE FOUND PLENTY OTHERS LIKE
 HER.
>
>
> >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.
>
>
> IS SHE TRYING TO IMPLY THAT PHYSICIANS WOULD PAY PATIENTS TO PROVIDE
 TESTIMONIALS?
>
>
>
> >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'M SURPRISED THAT THE REPORTER HAS NOT TRIED TO IMPLY THAT THIS WAS ALL
 PLACEBO (SEE BELOW)
>
>
> >"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.
>
>
> DR SHOULSON, A RESPECTED MEDICAL NEUROLOGIST, (SOME MAY RECALL) APPEARED IN
 TIME OR NEWSWEEK A FEW YEARS AGO AFTER REPORTING HIS STUDIES THAT SHOWED THAT
 DEPRENYL SLOWED THE PROGRESSION OF PARKINSON'S DISEASE. THE SILENCE ON THIS
 POINT HAS BEEN DEAFENING > SINCE THIS TIME.
>
>
>
> >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.
>
>
> IF THIS PATIENTS'S LESION HAD BEEN IN THE "WRONG AREA" SHE WOULD HAVE BEEN
 PARALYSED ON THE OPERATING TABLE.
> >
>
> >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.
>
>
> PERHAPS-DID HE HAVE A CT OR MRI SCAN ON WHICH TO BASE HIS LEARNED OPINION?
 AND HOW WAS THIS DESCRIPTION "PROVIDED" TO HIM? PROBABLY BY AN AMBITIOUS
 REPORTER OVER THE TELEPHONE TRYING TO GET HER ARTICLE READY FOR PRESS DEADLINE
>
>
>  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.
> >
> T>here is no definitive test for Parkinson's or for multiple sclerosis. But
> n>eurologists said that the two diseases have such different symptoms that it
> w>ould inconceivable that they could be confused.
>
>
> THEY USUALLY DO. BRAIN TUMORS AND MULTIPLE SCLEROSIS ALSO HAVE DIFFERENT
 SYMPTOMS. WOULD YOU LIKE TO HEAR ABOUT THE NEUROLOGISTS WHO HAVE REFERRED
 PATIENTS WITH MS TO ME TO OPERATE ON THEIR BRAIN TUMOR? THE POINT IS THAT THESE
 DIAGNOSES ARE NOT ALWAYS AS > CLEAR CUT AS THE ARTICLE IMPLIES.
> >
>
> >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.
>
>
> THERE ARE SEVERAL ONGOING STUDIES BEING CONDUCTED AT UNIVERSITY MEDICAL
 CENTERS ON PALLIDOTOMY IN THE US AND IN EUROPE. IN FACT, WE HAVE HAD ONE AT NEW
 YORK UNIVERSITY MEDICAL CENTER FOR THE PAST TWO YEARS WHEN MIKE DOGALI STARTED
 IT AND I HAVE CONTINUED > IT IN COLLABORRATION WITH THE DEPARTMENT OF
 NEUROLOGY. THIS IMPORTANT WORK CONTINUES-WITH THE POSTOPERATIVE FOLLOW-UP BEING
 DONE NOT BY THE SURGEON BUT BY AN IMPARTIAL NEUROLOGIST.
>
> NOW NEW YORK UNIVERSITY IS IN THE SAME CITY AS THE NEW YORK TIMES. DON'T YOU
 THINK THAT A RESPONSIBLE REPORTER WOULD HAVE AT LEAST GIVEN US A PHONE CALL?
> >
> >
> T>HE 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.
> >
>
>
> THIS MAY BE IN PART TRUE. BUT WHAT ABOUT MRS WHITLING ?-GOING FROM A WHEEL
 CHAIR TO PLAYING TENNIS IS ONE HECK OF A PLACEBO. IF THAT'S A PLACEBO, I WANT
 SOME OF IT.
>
>
> >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.
>
>
> HELPING SOMEONE WITH THEIR RIGIDITY, BRADYKINESIA, DRUG INDUCED DYSKINESIA AND
 GAIT USUALLY PUTS THEM IN A GREAT MOOD.
> >
>
> >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.
> >
>
> ANY PARKINSON PATIENT SHOULD BE ABLE TO SEE THROUGH WHAT A LOT OF ROT THIS IS.
 RIGIDITY,BRADYKINESIA, FREEZING ARE HARD TO QUANTIFY ON A ROUTINE NEUROLOGIC
 EXAMINATION EVEN IF PERFORMED AT FINITE INTERVALS DURING THE DAY, ON AND OFF
 MEDICATION AND AT MORN> ING AND NIGHT. THE POOR PARKINSON'S PATIENT IS LIVING
 IN HIS OR HER BODY 24 HOURS A DAY. IF THEY FEEL BETTER OR WORSE-THEY SHOULD BE
 ABLE TO KNOW BETTER THAN ANY DOCTOR.
>
>
> >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.
>
>
> WITH AN OPERATION HAVING A BENEFIT OF OVER 80 % PERFORMED IN PEOPLE WITH
 LITTLE HOPE BEFORE THE OPTION OF SURGICAL IMPROVEMENT IN THEIR SYMPTOMS-YOU BET
 HE HAS A FAN CLUB-OF AT LEAST 400 MEMBERS BY MY CALCULATIONS (500 TIMES 80%).
 HOWEVER, WITH A 5% RISK > THERE WILL BE AT LEAST 25 WITH BAD RESULTS THAT
 UNDERSTANDIBLY WON'T BE SIGNING UP FOR THIS FAN CLUB-SEE BELOW.
> >
> ]
> >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.
> >
>
> VISUAL PROBLEMS ARE NOT A COMMON SIDE EFFECT. IN FACT, I DON'T RECALL ANY IN
 OUR EXPERIENCE. EVEN LAURI LAITINEN USING (IN MY OPINION) RATHER CRUDE
 LOCALIZATION METHODS AT THAT TIME REPORTED VISUAL FIELD DEFICITS FOLLOWING ONLY
 6 OF 42 PROCEDURES (LAITINE> N ET AL . J NEUROSURGERY 76: 53-61,1992)
>
>
> >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."
>
>
> WASN'T THIS THE FELLOW WHO WAS STARTING A PALLIDOTOMY PROGRAM AT BARROW? IF HE
 HAD SUCH MISERABLE EXPERIENCE WITH HIS PATIENT'S DONE BY IACONNO-WHY IS HE
 STARTING TO DO IT?
> >
>
> >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."
>
>
> PERHAPS HE AND HIS COLLEAGUES SHOULD LEARN HOW TO DO THE OPERATION.
> >
>
> 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.
>
> THIS IS TRUE. PERHAPS SOME WILL REMEMBER THE BALLYHOO OVER ADRENAL MEDULLARY
 BRAIN IMPLANTS STARTED IN MEXICO A FEW YEARS AGO ? STUDIES WERE RAPIDLY SET UP
 IN RESPECTED AMERICAN CENTERS WHERE THE RESULTS WERE EVALUATED BY INDEPENDENT
 NEUROLOGISTS. IT WAS > FOUND OUT THAT THE OPERATION WAS WORTHLESS FOR PROVIDING
 LASTING BENEFIT. NONETHELESS, THERE WERE NEUROLOGIST AS WELL AS NEUROSURGEONS
 WHO WERE FOOLED INITIALLY.NOBODY THAT I KNOW OF DOES THESE PROCEDURES ANYMORE.
>
> SIMILAR STUDIES ARE PRESENTLY UNDERWAY FOR PALLIDOTOMY.
>
>
> >"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."
>
> AS I SAID, NOT EVERYBODY GETS A GOOD RESULT. BUT WHAT DOES THE PATIENT FEEL?
 DOESN'T HE GET A VOTE?
> >
>
> >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."
>
>
> THIS IS WHAT'S NEEDED. THEY'RE DOING IT. WE'RE DOING IT. OTHERS ARE DOING IT.
>
>
> >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.
> >
> T>he real problem, Langston said, is that patients often do not want to hear
> a>bout the uncertainties surrounding pallidotomies. "We look like the
> h>eavies," he said. "It's scary."
> >
>
> COME ON NOW, PATIENTS ALWAYS HAVE TO HEAR ABOUT THE UNCERTAINTIES BEFORE ANY
 SURGERY. IF ANY PATIENT HEARS THAT A PROPOSED SURGERY (A PALLIDOTOMY, BRAIN
 TUMOR REMOVAL, APPENDIX OR BUNIONECTOMY) HAS NO COMPLICATIONS AND THE RESULT IS
 GUARANTEED-HEAD FOR TH> E DOOR-THE SURGEON IS NOT BEING HONEST WITH YOU.
 PATIENTS, IN MY EXPERIENCE, APPRECIATE THE TRUTH; PATIENTS WHO CAN'T HANDLE THE
 TRUTH ARE USUALLY NOT GOOD SURGICAL CANDIDATES AND WILL USUALLY NOT BE HAPPY
 WITH THE POSTOP RESULT. I HAVE FOUND THAT ANYTHIN> G THAT I TELL A PATIENT
 BEFORE SURGERY IS CONSIDERED AN "EXPLANATION" ANYTHING I TELL THEM AFTERWARD IS
 CONSIDERED AN EXCUSE.
> >
> >
>  These are just my impressions off the top of my head after reading the New
 York Times article which appeared on the front page. I must say that for the
 first time since my arrival in New York, I'm embarrassed to be a New Yorker, in
 spite of the fact that>  it is one of the truly great cities in the world. I am
 going to cancel my subscription to the New York Times, however, which should
 make me feel better.
>
> If I did my job as recklessly and sloppily as this reporter, I'd be out of
 business. So would many of you. I believe that this article would have been
 more appropriately printed in the National Enquirer ( I don't mean to insult
 the N.E.). It was poorly re> searched, malignantly presented and has caused a
 significant amount of anxiety in a feeble effort to increase the circulation of
 the newspaper. If they allow shoddy and reckless reporting like this, imagine
 what they're doing to stories on national policy> , international crises and
 financial markets.
>
> Regards
>
> Patrick J. Kelly, MD
> Professor and Chairman
> Department of Neurosurgery
> New York University Medical Center
> 530 First Ave
> New York, NY 10016
>