Bill... Gee... that must be a pretty old article, m'friend, 'cause of Dr. Iacono's Web site, it's posted he's performed about 1500 pallidotomies, rather than the 500 the article attributes to him. The URL for Dr. Iacono's site is: http://www.pallidotomy.com Barb Mallut [log in to unmask] ---------- From: Parkinson's Information Exchange on behalf of HEIT BILL Sent: Wednesday, May 20, 1998 11:46 AM To: Multiple recipients of list PARKINSN Subject: another one This is a multi-part message in MIME format. --part0_895690006_boundary Content-ID: <[log in to unmask]> Content-type: text/plain; charset=US-ASCII Please see attached text file (with line breaks). Regards, WHH 54/18 --part0_895690006_boundary Content-ID: <[log in to unmask]> Content-type: text/plain; name="20MAY9~1.TXT" Content-transfer-encoding: quoted-printable Content-disposition: inline Hope From A Knife =97 =97 Surgery for Parkinson=92s Brings Success Stories In Face of Skepticism =97 =97 Patients Tell of Great Relief Operation to Cut A Spot Deep in the Brain =97 =97 Rediscovering an Old Idea =97 =97 By DAVID STIPP Staff Reporter of THE WALL STREET JOURNAL =97 =97 Edward Weinberger has had Parkinson=92s disease for 13 years. His sympto= ms grew steadily more frequent and agonizing: painful periods of near paralysis a= nd, at times, uncontrollable tremors. He tried drug after drug, with dwindling benefit= s. By last year, =93I couldn=92t go out for more than a half hour without freezing up,=94 says = the 52-year-old New York investment banker. =93I couldn=92t get out of bed by myself or turn= over. I hadn=92t driven a car for 10 years. Sometimes I couldn=92t talk, and choked=94 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=92s patient= s and burned out a sliver of hyperactive neurons in an area called the pallidum. Some= 92% had =93complete or almost complete relief of rigidity=94 after this =93pallid= otomy=94 operation, while 81% had =93excellent or good long-lasting tremor relief,=94 said the 1992= report in the Journal of Neurosurgery. =93A good test of the procedure,=94 Dr. Laitine= n wrote separately, =93is to have the patient dance after surgery.=94 =97=97=97=97=97 =97=97=97=97=97 A Changed Man =97=97=97=97=97 =97=97=97=97=97 Last fall, Mr. Weinberger flew to Stockholm for a pallidotomy by Dr. Lait= inen. While in surgery - done under local anesthetic - =93I went from a state of total r= igidity to feeling all of a sudden released,=94 Mr. Weinberger says. =93Two days after I was walki= ng 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=92t quite believe it.=94 With little notice, hundreds of Parkinson =91s patients have grasped at t= his surgical straw over the past two years - most, it appears, with startlingly good r= esults. The procedure isn=92t a cure. It sometimes doesn=92t 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 promi= sing Parkinson=92s treatment since the 1960s advent of L-dopa, the drug that inspired the bo= ok and subsequent movie =93Awakenings.=94 =93I was very, very skeptical when I first heard Laitinen=92s claims,=94 = says Patrick Kelly, a New York University neurosurgeon. =93Even when I saw the results the fir= st couple of times, I thought it was a fluke. But I=92ve become a believer.=94 Dr. K= elly has now performed about 30 pallidotomies himself. =97=97=97=97=97 =97=97=97=97=97 Waiting List =97=97=97=97=97 =97=97=97=97=97 Another neurosurgeon, Robert Iacono of Loma Linda University in Californi= a, has done almost 500 of the operations since hearing Dr. Laitinen=92s results:= It=92s a real revolution,=94 he contends. =93I=92ve seen dozens of wheelchair-bound pa= tients become almost completely functional.=94 Demand is exploding for the operation as stories about its benefits filte= r out through patients support groups. Some of the 20 or so U.S. medical centers that = offer the surgery have year-long waiting lists. Dozens of Americans have flown to = Sweden for it, although Dr. Laitinen also has a backlog. Parkinson=92s disease afflicts roughly a million Americans. Some doctors= say perhaps 100,000 of them currently would be good candidates for the surgery, gener= ally the ones whose drugs are failing them but who don=92t yet have major brain damage = from the disease. Many more patients, perhaps most people who get Parkinson=92s, = 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. =93All (pati= ents) fail eventually=94 to respond well to L-dopa, Dr. Kelly says. =93Many of them could become = candidates for pallidotomy.=94 =97=97=97=97=97 =97=97=97=97=97 Plenty of Doubters =97=97=97=97=97 =97=97=97=97=97 Such thinking has ignited a momentous debate: On one side are neurosurgeo= ns and hopeful patients who are convinced the surgery can help many; on the othe= r side are doctors and health-maintenance organizations saying it is a hyped, experi= mental treatment that doesn=92t warrant insurance coverage. (Many non-HMO insur= ers, including major Medicare contractors, do cover the $20,000-to-$40,000 operation.) Some people with Parkinson=92s say they quit their primary doctors in a h= uff after the surgery, adding that the physicians opposed it and sometimes later refuse= d to acknowledge its benefits. =93My neurologist was totally against it,=94 s= ays Lenore Rabjohns, a San Diego resident whose former HMO doesn=92t pay for the surgery. Pay= ing out of pocket, she had Dr. Laitinen do the procedure on both sides of her brain = - each side has a pallidum giving =93immense relief from Parkinson s symptoms,=94 she say= s. =93When I went back to my neurologist, he said it was just a placebo effect.=94 Neurologists, the main specialists for Parkinson=92s, 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. =93There=92s benefit to be derived from pallidotomy for = very carefully selected patients,=94 says Robert Feldman, a neurologist at Boston Univer= sity. But I wouldn=92t refer patients to Iacono. I don=92t think he=92s thinking cri= tically. He=92s thinking surgically. Please Turn to Page A8, Column 1 =97 =97 Hope From a Knife: Parkinson=92s Patients Claim Relief After Operation to Cut a Spot Deep in the Brain =97 =97 Continued From First Page =97 =97 Dr. Iacono, the operation=92s leading U.S. proponent, has become a lightn= ing rod for skeptics. Some of his patients recently posted =93testimonials=94 about = benefits of the surgery on the Internet that =93almost sound like snake oil,=94 says Robe= rt Fink, a neurosurgeon in Berkeley, Calif., who doesn=92t do pallidotomies. Replies Dr. Iacono: The benefits of the surgery =93are very dramatic, and= neurologists just can=92t stand it. Their mildly positive statements about it are a f= orm of apathy that=92s malignant. There are some good reasons for caution, though. What causes Parkinson= =92s 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 befor= e age 50. Parkinson=92s typically starts with weakness in a limb or a slight h= and. tremor, then worsens over five, 10 or 20 years, potentially ending in paralysis, demen= tia and early death. Parkinson=92s sufferers often have impassive faces, speak in soft monoton= es and walk with small, shuffling steps, hunched forward. They suffer insomnia, excr= uciating pain from rigid muscles, depression, nightmares and hallucinations from Parkin= son=92s 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 ca= n dislocate joints. =97=97=97=97=97 =97=97=97=97=97 Other Initiatives =97=97=97=97=97 =97=97=97=97=97 Skeptics about pallidotomy often cite the false hopes raised in 1987 by a= Mexico City surgeon named Ignacio Madrazo. He reported helping patients by transplan= ting 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 complica= tions. (The effectiveness of another kind of brain transplant for Parkinson=92s disea= se - of brain tissue from aborted fetuses - isn=92t 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 giv= en sham artery bypass operations - incisions without bypasses - reported as much = relief from the pain of angina as those who got bypasses. With Parkinson=92s, the risk o= f overestimating an operation=92s benefits is heightened by the subjective nature of many = of the disease=92s symptoms, says Chicago neurologist Harold Klawans. =93A patient=92s mood= can affect how much he can do=94 in overcoming the disease=92s lack of muscle control, h= e says. While acknowledging that pallidotomies can help some people, the doubters= say desperate patients may rush to get the operation from surgeons who don=92= t have much experience doing it, with potentially disastrous results. Indeed, Dr. La= itinen reported that six of his first 38 pallidotomy patients had permanent blind spots in the= ir 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, wit= h only limited success, to help by destroying parts of the pallidum. The idea a= rose from the observation that Parkinson=92s patients who had minor strokes sometimes l= ost their tremor. The strokes apparently had disabled misfiring neurons that were = responsible for the quivering. =97=97=97=97=97 =97=97=97=97=97 First Efforts =97=97=97=97=97 =97=97=97=97=97 Beginning in the 1930s, surgeons tried to nick the same brain area hit by= the beneficial strokes. The results were promising - and appalling. One pio= neer, Russell Meyers, reported that after he cut nerve tracts near the pallidum in 38 p= atients, 25 had lessened Parkinson=92s symptoms but six died soon afterward. Later, surgeons improved the precision of probes and did better. By dest= roying part of the pallidum, an area that helps control movement, they alleviated som= e of the muscle rigidity. But the surgery reportedly did little for tremor and the inabi= lity to make voluntary movements. Then researchers learned that the brains of Parkinson s patients were def= icient in dopamine, a neurotransmitter that carries signals between neurons. In th= e late 1960s, they found that oral doses of a dopamine precursor, L-dopa, could ease th= e deficiency, mitigating symptoms. That killed off most surgery for the disease. Unknown to most doctors, however, a noted Swedish surgeon named Lars Leks= ell had found that by knocking out part of the pallidum not usually targeted,= he could dramatically improve all Parkinson=92s symptoms. The late Dr. Leksell di= dn=92t publish his finding =93because he believed that a neurosurgeon was biased in reportin= g his own results,=94 says Dr. Laitinen, one of his prot=E9g=E9s. Less old-fashion= ed, Dr. Laitinen issued his startling 1992 report on the procedure after trying it on 38 patients= who were failing on L-dopa. =93Neurologists were extremely surprised by the results,=94 says Dr. Lait= inen. He says he has now performed about 350 pallidotomies with similar results. =93Young= er patients do particularly well. We recently checked the first 10 patients who got pal= lidotomies in 1985 and 1986,=94 he says, =93and nine of them are doing well.=94 =97=97=97=97=97 =97=97=97=97=97 How It Might Work =97=97=97=97=97 =97=97=97=97=97 Medical textbooks say brain surgery can help the tremor of Parkinson=91s = but not the freezing. Rethinking that in light of the new pallidotomy results, scien= tists theorize that lack of dopamine incites furious firing by certain neurons that normally = help suppress undesired movement. That causes Parkinson=92s patients to freeze up. Pa= llidotomy appears to cut these overactive =93inhibitory=94 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 feder= ally funded study to answer these questions, but its results aren=92t expected for ye= ars. A report on 126 patients given pallidotomies by Dr. Iacono is expected to be publishe= d 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 t= he Parkinson=92s- disease network. In a moving segment, Mr. Bonander is shown with immobil= e limbs just before the surgery. then flexing his limbs with fluid speed just after -= calling to mind the =93Wizard of Oz=94 scene in which Dorothy oils the rusted tin man. Mr. B= onander say he still has some problems with tremor and rigidity, but =93my quality of life=94 = has improved. =97=97=97=97=97 =97=97=97=97=97 Outcomes Research =97=97=97=97=97 =97=97=97=97=97 David Devor, a Jerusalem resident whose wife has Parkinson=92s, recently = posted on the Internet what may be the most comprehensive report so far on pallidot= omy outcomes. After being advised against the surgery by his wife=92s doctor= , he asked Dr. Iacono for evidence that it works. =93I heard a lot of neurologists call= him a charlatan,=94 Mr. Devor says. Dr. Iacono responded by sending him the names of all his pallidotomy pati= ents from late 1993 to late 1994. Running up a $1,000 phone bill, Mr. Devor interv= iewed 113 of the patients or their spouses. Nine said they hadn=92t been helped, incl= uding five who said they got worse, Mr. Devor reported; but about 80% said the surgery gave t= hem =93marked improvement,=94 with symptoms lessened by 20% to 100%. Many described the surgery with words like =93miraculous,=94 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 o= r almost normally, and even drive a car.=94 Mr. Devor concluded by asking, =93Would I fly i= n 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?=94 His wife, Aviva, is scheduled to have a pallidotomy next week. =97=97=97=97=97 =97=97=97=97=97 END =97=97=97=97=97 =97=97=97=97=97 The Wall Street Journal; Wednesday, February 22, 1995; Page 1 Hope From a Knife Page 1 --part0_895690006_boundary--