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Regards,
WHH 54/18
PS: Sorry, I just sent this without reference to pallidotomy. The Subject
line said something like "another one" in reference to a previous (even
earlier) posting.
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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.
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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
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