Dear Parkinson's Disease Listmembers:
 
 
As people reading this List have undoubtedly observed, there has been a
lively exchange going on here regarding pallidotomy and other surgical
treatments for PD; and, the other day, I was subjected to a "flame" for
some of my posts regarding my continuing skepticism regarding the
enthusiasm over pallidotomy.  May I state here, quite positively, that I
have had direct e-mail correspondence with Barbara Yacos regarding the
misunderstanding which had existed between us, and we have both agreed
that it is far more productive to debate these important issues without
resorting to personal attack.  I am satisfied that Barbara and I have
re-established an atmosphere of good will and the matter of the "flame",
for me, is closed.  I also appreciate the notes of support from other
Listmembers and acknowledge same.
 
In my personal exchange with Barbara, I sent her the original letter
which I had sent to Mr. Stipp (the reporter who wrote the Wall Street
Journal article of last week), and pointed out how my use of the words
"snake oil" (and I did write them) were taken out of context.  I am
hereby posting the full text of that letter from me below; the only
change was the removal of Don Berns' name from the posting, as I did not
wish to be in violation of Dr. Berns' privacy, either (compromise of
patient privacy is one of my major concerns in this entire issue).  I
had, however, used Dr. Berns' name in the letter to Mr. Stipp, because
Mr. Stipp had apparently already contacted Don and knew of his opinions
when he talked to me.  The letter to Mr. Stipp follows below:
 
----------------------------------------------------------------
 
TO:  David Stipp  <[log in to unmask]>
 
RE:  Pallidotomy
 
 
Dear David:
 
I am a neurosurgeon who has been active on the Parkinson's Disease List,
and I have become
involved in the ongoing debate on pallidotomy.  I did pallidotomies back
in the sixties while I was
a resident at the University of Chicago, this during the era when this
kind of surgery (including
thalamotomy, which was done more specifically for tremor) was quite
popular.  In the late sixties,
two things happened which markedly decreased the usage of this type of
surgery; one was the
failure, after much hoopla, of Margaret Bourke-White's operation; and
later, the discovery of L-
DOPA by Cotzias, which revolutionized the treatment of Parkinson's at
that time.  Bourke-White,
a LIFE magazine photographer (and Pulitzer winner, I think), had a
dramatic result for her tremor
when operated by Irving Cooper in New York; but several years later, the
disease advanced, and
she died after becoming an invalid.
 
The problems with the Parkinson's surgery back in the sixties was that
those earlier operations
seemed to reduce, sometimes dramatically, the tremor, but had less
effect on the rigidity that is
associated with PD, and had almost no effect on the "slowness" that is
characteristic of the disease in
the later stages.  The beneficial effects of the surgery, also
diminished with time.  By the mid-
seventies, almost nobody was doing PD surgery anymore.
 
A few years ago, a Swedish surgeon (Lauri Laitinen, M. D.) resurrected
the operation (as done by
a now-deceased Swedish colleague, Lars Leksell, M. D.), and added some
newer technology to
same.  Laitinen has published a few articles reporting some improvement
in the rigidity and
slowness problems (he went back to the globus pallidus as the site for
the lesion), and a number
of other neurosurgeons, some in the USA, have started to do the
operation again (I, personally
do not).  The results of this new work, as published in the scientific
literature (and I have
searched such), are still somewhat equivocal, especially as to the
*length of time* that the
beneficial effects last; and, in my opinion, it is too soon to call the
present-day work with
pallidotomy more than "experimental".  For certain patients, there may
be a role for this
approach, especially since the drug therapy of PD also seems to lose its
beneficial effects with
time.
 
The way that I got involved with this debate was when, on the Parkinson
List, a man named
XXXX, from Southern California, began making posts there extolling the
pallidotomy operation
(he has had one).  His posts were almost "testimonial" and full of what
was almost "religious
zeal", this as it pertained to a program going on at Loma Linda
University in Southern California,
this program being directed by Robert Iacono, M. D., a neurosurgeon
there.  I did not object to
the program in any way; but I was highly disturbed at Mr. XXXXX's posts
(because of their,
IMHO, unrealistic optimism) to a group made up of people with a chronic
and disabling disease;
and this debate, including some personal and direct correspondence
between myself and Mr.
XXXXX, has become somewhat heated.  I have written directly to Dr.
Iacono (as a colleague) to
ask whether he is aware of the "testimonializing" of one of his
patients, and I have not yet
received a response.  There are exchanges going on in the Parkinson's
List from as far away as
Israel (from family members of severely disabled people with PD), and it
almost sounds like
"snake oil", especially in view of what I think is a premature
endorsement based on what actually
does appear in the medical literature.
 
Recently, I have taken up this problem with several other neurosurgical
colleagues, many of
whom share my views (that the research being done by Dr. Iacono at Loma
Linda and elsewhere
is worthwhile but not "proven" yet); and I refer you to Patrick J.
Kelly, M. D., Professor of
Neurological Surgery and Chairman of the Department at NYU Medical
School in New York City.
Dr. Kelly does pallidotomies and believes that the surgery may be useful
in selected cases, but
he shares my skepticism and concern over the "testimonializing" that has
recently been going
on.  I would suggest that you may wish to contact Dr. Kelly and discuss
the situation with him,
this to get a reasoned approach to a complex problem.  Dr. Kelly's
e-mail address is:
<[log in to unmask]>, and you can use my name when you write to
him.  If you wish,
you can feel free to correspond further with me (see my "sig" at the end
of this message); but I
think that you will get more information about the current "state of the
art" in Parkinson's surgery
from Dr. Kelly.  I would very much appreciate receiving a copy of your
article when it is
completed.
 
Thank you for your interest.
 
 
Best wishes,
 
Robert A. Fink, M. D.
 
------------------------------------------------------------------------
----
 
I hope that the Listmembers can see that my concerns regarding
pallidotomy are in no way intended to cast aspersions on any of the
people researching this procedure; but are mainly an attempt on my part
to, as another correspondent to this List said yesterday, maintain a
healthy level of skepticism for any new procedure.
 
Yesterday, Alan Bonander posted a long message which also contained some
items which could be interpreted as personal aspersions on me.  I will
not respond in kind, because, as I wrote to Barbara, I do not feel that
this approach is productive.  Alan, however, has asked some challenging
questions, and I shall attempt to respond to such.
 
Alan (and Don before him) suggested that I "do not know anything" about
pallidotomy.  Alan goes on to inquire as to my "statistics" from the
days when I did pallidotomies, and further suggests that my
neurosurgical work today may not be optimal.  To these allegations I
must answer that my pallidotomy experience was during the time between
1962-66, when I was a resident in training at the University of Chicago
Hospitals, a major neurosurgical center, and where the Professor, Dr.
John F. Mullan (now retired), was engaged in clinical research on
stereotactic surgery for movement disorders.  Dr. Mullan developed a new
technique (since abandoned for a better method) of creating lesions
using a radioactive needle; and a number of papers were written during
the mid and late sixties on the University of Chicago experience with
stereotactic surgery for movement disorders (we treated patients with
dystonia, cerebral palsy, and other conditions as well as people with
PD).  My experience in doing pallidotomy was as a resident; and, when I
completed my training, and my military service (ended 1969), surgery for
PD was no longer in favor, and I have not done any such procedures
since.  I have, however, maintained an interest in this condition; this
because of my early experience in the sixties; and also because of the
fact that, when I was a medical student in Baltimore in the late
fifties, I did some basic research (also published) on the physiology of
tremor.  I try very hard to keep abreast of the medical literature in
this and other areas of my specialty; and I thank the List for
encouraging me to be even more obsessive in this regard.
 
Alan makes the suggestion that somehow, I am somewhat "questionable" as
to my own training, experience, and outcome results.  If "credentials"
mean anything, I hold them all; I have been involved in peer review for
many years, I have not been accused of incompetence or unethical
behavior, do not have any malpractice suits against me; and I think that
my standing in my community is a respected one.  I have indeed allowed
prospective patients (for whatever treatment proposed) to speak with
former patients, but I have not permitted this unless the former patient
gives permission for such, this due to privacy considerations.  If, for
example, a patient who suffered from AIDS was involved in a study of a
new treatment for same, how would that patient feel if they suddenly
found that their name was on a "list" which was available to laypersons
interested in treatment outcomes?
 
I am saddened at Mr. Bonander's criticisms of Dr. Nicholas Barbaro at
UCSF.  I am not aware of Dr. Barbaro's results as far as pallidotomies
are concerned; but I do know Dr. Barbaro, and have found him to be a
competent academic neurosurgeon, working at an excellent institution,
who cares for his patients; and until recently, Dr. Barbaro was the only
neurosurgeon in my area who was working with PD surgery (I understand
that this may change shortly, and this is all to the good).  As to the
"fully qualified neurosurgeon" who "canvassed the East Bay hospitals for
a place to perform these surgeries" and who, according to Mr. Bonander
was "refused" privileges to do such, I am aware of Dr. Laszlo Tamas and
his interest in this surgery (and he, by report, has received privileges
to do this surgery at a small community hospital in our area); but,
although I am a member of our hospital's Credentials Committee, I have
not seen his application at our institution and am not aware of any
"obstruction" to his work.  Our institution, the Alta Bates Medical
Center in Berkeley has, in the past, granted privileges to surgeons
(with proper training and experience) who have wished to bring new
technologies to our community; and, in the case where none of the
current staff members do the procedure, we have arranged for the peer
review to be carried out by "outside" people under the supervision of
the Credentials Committee.  So, the issue of "privileges" is not really
an issue, although I, myself, as previously stated, have reservations as
to whether clinical research should be done in private, community
hospitals.  Despite my concerns, however, I would not "obstruct" such
surgery being done if the proper equipment, personnel, and safeguards
were in place.
 
As to my father-in-law (and he was the main reason that I joined this
List), he has considered the surgery option (and he is a retired
physician) and has declined such.  As an academic (he was Professor and
Head of the Department of Medicine at a major eastern University before
his retirement), he has studied the literature and has made his own
conclusions, which I fully support.  I agree with Alan that many
decisions made by patients are based on emotional considerations; and
this is only "human"; but when it comes to scientific research, it is
only through reasoned and objective analysis that progress will be made.
 The Mexican work (adrenal cell implantation), cited by Mr. Bonander, is
a typical example of how "emotionalism" can lead to injury to people;
and I do not wish to see this type of thing repeated in the case of the
current work with pallidotomy.
 
There is an old maxim in medicine which I would like to re-visit here.
Most of us who go into the healing professions do so because we "want to
make people better".  We are often consumed with this desire; and,
because of this, we can do things which, far from improving a patient's
condition, can actually make them worse.  The old surgical dictum,
"First do no harm" is a good one to remember; I take it one step further
when I say that sometimes, it may be better to *not* "do something" when
the "doing" may actually lead to worse problems than what is "standard".
 It may well be that pallidotomy *is* a real advance in the treatment of
PD; but the only way that this is going to be decided is by employing
the time-tested scientific and ethical canons of medicine, and not
trying to advance the art and science of medicine by "anecdotal"
evidence.  "Anecdotes" are valuable for individuals, but when one is
trying to bring advances to humankind as a group; I believe that
"science" is what is to be desired.
 
I appreciate the posting of Don Berns' 1994 article from Movers and
Shakers, and I respect his dedication, fortitude, and faith.  It is a
tribute to Don as a person; and, as I have told him directly, I admire
him for his strength as he proceeds on his personal journey with PD.  I
cannot, however, agree with some of his activities concerning *other*
people afflicted with PD, and I have likewise told him so.  I hope that
we can all "put this matter to rest" (personal attacks) as we continue
to use this List for what it is (and serves well), a group dedicated to
the spread of information and support for its members.
 
 
Sincerely,
 
Bob
 
 
c:\amipro\docs\pallid4.sam
 
 
 
--
********************************************************
 
Robert A. Fink, M. D., F.A.C.S.   Phone: 510-849-2555
Neurological Surgery              FAX:  510-849-2557
2500 Milvia Street  Suite 222
Berkeley, California 94704-2636
USA
 
E-Mail:  [log in to unmask]
CompuServe:  72303,3442
America Online:  BobFink          "Ex Tristitia Virtus"
 
********************************************************