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
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----------
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

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Please see attached text file (with line breaks).


Regards,
WHH 54/18

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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.
=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


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