Dear friends,
Some of you may recall my posts of several months ago expressing
interest in simultaneous, bilateral pallidotomy on behalf of my
wife, Aviva. Well, the penny has dropped and she has a date for
surgery with Dr. Iacono of Loma Linda on March 1. The following
explains our decision.
Blessings to all,
David
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Postoperative Patient Follow-up Survey For Pallidotomies Performed
On Parkinsonian Patients of Dr. Robert P. Iacono 11/22/93-11/21/94
by: David S. Devor January 5, 1995
This survey was precipitated by the need to resolve a conflict bearing
on the future well-being of my wife, Aviva, who is suffering greatly in
her tenth year of affliction with Parkinson's disease. On the one
hand, we were encouraged by the spectacular results claimed by Dr.
Iacono for the simultaneous bilateral procedure he has pioneered. On
the other hand, we have been receiving negative feedback from quite a
number of neurologists from around the world, some of them quite
celebrated, admonishing us to distance ourselves from Dr. Iacono. While
Iacono's claims did sound almost too good to believe, the invective
against him seemed inconsistent with patient recovery anecdotes we had
heard and with the fact that he was continuing to routinely perform
large numbers of pallidotomies from within one of America's major
medical centers.
Since we didn't wish to abandon the hope Iacono represents, we felt
that the only solution was to perform an independent survey of his
patients concerning the results of their surgery in spite of the
significant cost and effort. (We are situated in Israel and the bulk of
Iacono's patients are in the U.S. so I anticipate a phone bill
approaching $1,000.) Just about everyone with whom we consulted said
Dr. Iacono would use the usual pretexts (including "patient
confidentiality") to withhold the list from us. But after explaining
our predicament to Dr. Iacono, he without prevarication or hesitation
agreed to send us the list. This list, Dr. Iacono says in his cover
letter, contains "consecutive series of operative patients during the
year 1994." It also says that the list is "unedited." My follow-up
seemed to confirm the unedited nature of this list in that I found that
in addition to disappointed and disgruntled patients, it contained one
person scheduled for pallidotomy who, upon hearing negative reports on
Dr. Iacono, canceled out at the last moment to get his pallidotomy done
elsewhere. Still another was scheduled for surgery when, at the last
moment, it was determined that his condition did not indicate
pallidotomy.
The list contains 165 entries arranged consecutively, by date,
beginning with one dated 11/20/93 and ending with one dated 11/21/94.
The list includes telephone numbers and I have attempted to phone
everyone on the list except three whom I already knew to have had
positive results. On a daily basis I went back to unresponsive numbers
during the 2 week period between Dec. 25, 1994 and Jan. 5, 1995. Eleven
names appeared twice. These were cases who went back for a second
procedure within the year, i.e., the completion of a non-simultaneous
bilateral pallidotomy. Two cases (referred to above) turned out to be
last minute cancellations and 33 numbers were unobtainable or belonged
to correspondents who were not available during the period in question.
(These included disconnected numbers or no answer, wrong numbers,
answering machines, fax signals, people on travel, etc.).
I actually spoke to a total of 113 households. Over half the time I got
to speak with the patient him/herself and the rest of the time with
spouses and very occasionally a "care giver" or friend, son or
daughter. In a few cases, both spouses participated in the call (using
an extension or speakerphone). Only one case refused to give details
and one hung up refusing to hear why I called. Of the 17 names freely
given out by Dr. Iacono's office as references, only 3 appeared on this
list (one of which appears 3 times), the rest having had their
procedures either before 11/22/93 or after 11/21/94. Knowing these
could only be positive, as mentioned above, I refrained from calling
them. Just under half of those I contacted had undergone simultaneous,
bilateral pallidotomies, a slightly smaller number had unilaterals and
about 10% had two consecutive procedures. Perhaps 5% had thalamotomies
(mostly for tremor) in addition to their pallidotomies. I failed to
record which procedure in about 15% of the cases.
At the beginning of each call, I indicated I was speaking from Israel,
that my wife was a candidate for a simultaneous, bilateral pallidotomy
by Dr. Iacono, that neurologists were against Dr. Iacono performing the
procedure and that we were seeking independent feedback to help us come
to a decision.
While my principal purpose in taking this survey was to learn how many
had been injured by the procedure and to help me estimate what risk was
involved, I could not remain indifferent to the eagerness of patients
to tell their stories and offer their experience in a bid to be helpful
to my wife. And since I was obviously hoping for positive results from
this survey and found these hopes encouraged, I feel a similar impulse
to pass this news along.
All those I interviewed were generous with information and all those
who felt they were helped, or even marginally helped, recommended that
my wife get the same help they did. Of the 9 who felt they were not
helped by the procedure, 5 said that they were sorry they underwent it
and 5 of the 9 (not all the same ones) felt they had actually been
harmed by the procedure. Of these, 4 gave an explicitly negative
recommendation. There were 4 patients with hemorrhaging that occurred
during or shortly after surgery with related seizures that mitigated
the benefits of the surgery. Only one case of hemorrhaging was felt to
have completely overshadowed the benefits of surgery.
Since the main purpose of this survey is to estimate risk, the
following is a summary of the negatively affected patients listed
according my survey case number:
32. Lost mobility after the procedure.
46. Wasn't helped, because he probably has "Parkinson's Plus."
52. Initial, significant improvement, then deterioration. Now better in some
respects and worse in others but still glad he did it.
60. Had no improvement, probably because he "couldn't keep awake" during the
procedure to cooperate with the surgeon but still would "recommend" the
procedure.
65. Much helped at first but died of pulmonary embolism and heart
attack one week later, which may have been caused by the surgery.
72. Could walk before the procedure, now can't. Blames it on the fact
that an "assistant" and not Dr. Iacono himself operated. Is against
the procedure.
92. Hemorrhaged in an airplane the day following surgery and has
subsequently suffered deterioration. Definitely against the
procedure.
95. A friend reported that this individual is in hospital and "not
doing well." At the time of the procedure his brain stem was found
to be small and the brain in general, in this 64 year old, was
found to be atrophied resembling someone in his 90's.
97. Enjoyed temporary relief but now worse off "perhaps because of the
procedure."
In about 25% of cases, I thought to inquire as to the attitude of the
individual's neurologist before and after the procedure. In most cases,
the neurologist was initially against the procedure and/or Dr. Iacono.
Neurologist's reactions to their patient's marked improvement (which
characterized the results of most patients [at least 80%]) ranged from
amazement, through embarrassed refusal to comment, to indications of
adjustment to a new reality and acceptance. In quite a few cases,
patients refrained (sometimes contemptuously) from returning to their
neurologists after surgery.
The majority (about 80%) of patients I interviewed expressed their
enormous appreciation for Dr. Iacono and his team and not infrequently
referred to their improved condition as "very positive," "greatly
improved" "wonderful," "marvelous," "tremendous, "a rebirth" and even
"miraculous." Estimates of the degree of improvement in this group
ranged from 20% to 100% with most in the higher values. Surprisingly,
this was true in the case of even patients in their late 60's, 70's and
even 80's.
Most typical were the expressions of relief to be again able to turn
over in bed, shower and dress alone, eat normally (without making a
mess) or to be able to abandon crutches, walkers and wheelchairs in
order to walk, write and work normally or almost normally, and even
drive a car, immediately or shortly after surgery. Dyskenesia, tremor,
inner tremor, rigidity, freezing, stiffness, cramping, sweating,
imbalance, dizziness, incontinence, stooped posture, restricted
dexterity were typically said to have largely if not completely
disappeared. Significant speech improvement and relief from depression
were reported in only a few cases. Almost all patients reported a
reduced need for medication. While a few cases reported some wearing
off of benefits of pallidotomy within a few months, a similar number
reported continued improvement with the passage of time. (There is only
a 12 month perspective to be had from this study.)
A majority of those who had one side only done, expressed their
intention to have the other side done either "soon" or at some future
time if and when their Parkinson's significantly spread to the other
side. Several offered "help" and/or asked me to call or visit them when
I come to the U.S. and to report the results of my wife's surgery, if
we decided in the affirmative.
Dr. Iacono was typically characterized as being "conscientious,"
"marvelous," "a fine individual," "a wonderful doctor," "a wonderful
young man," and by one patient, "an angel in disguise." The odd
patients who characterized him as "egotistical," "a hot dog," etc.,
were quick to add that "he knows what he's doing" and "in the operating
room he's all business."
Lastly, now that I've had some independent feedback concerning the
results of Dr. Iacono's work, I wish to speculate a little on possible
reasons for the disparity in attitude among neurologists and patients
concerning Dr. Iacono's work and character. It seems that most
neurologists have great difficulty in believing that consistently
positive and often spectacular reversal of Parkinson's symptoms, such
as those claimed by Dr. Iacono, are possible or that one can perform
pallidotomies as frequently as does Dr. Iacono without injuring a large
percentage of patients. Dr. Iacono's strikingly counterintuitive
claims, uninhibited display of confidence, independence of spirit and
apparent disregard for establishment sensibilities, understandingly
strains credulity and undermines sentiments of solidarity in mainstream
medicine. To the credit of dissenting neurologists, it should be said
that there has not been very much scientific data published on the
results of Iacono's work. It is my understanding that Dr. Iacono is
taking a hiatus from surgery in order to correct this oversight.
I will not attempt here to account for Dr. Iacono's singular success.
This I will leave to him. In spite of expert advice, I personally find
the results of my survey sufficiently unambiguous to want to put the
future well-being of my wife, Aviva, into Dr. Iacono's hands.
My rough notes, taken in handwriting during each telephone
conversation, are available for examination by any interested
neurologist. Contact:
David S. Devor
8 Mevo Hamaavak
French Hill tel: 972/2/814941
Jerusalem 97877 fax: 972/2/823276
Israel email: [log in to unmask]
