Greetings,
I received a long, thoughtful, informative letter from a
neurologist in the U.S. trying to set the record straight
concerning pallidotomy, neurologists, science, medicine and the
prudent use of the written word. I do hope he posts it to the
list for the benefit of all.
The following, omitting his identity, is my reply which I hope
will further clarify my position for those interested in our
pallidotomy dramma as it unfolds:
David & Aviva Devor, 8 Mevo Hamaavak, French Hill, Jerusalem 97877, Israel
tel: 972-2-814941 fax: 972-2-823276
email: [log in to unmask]
January 24, 1995
Dear Dr.
Thank you for last night's fax dated Jan. 17.
While I agree with much of what you say, I'm rather puzzled by why you
would address all this to me. I am a layman and my openly stated purpose
was to get the best help possible for my wife that is consistent with our
idea of reasonable risk. As you rightly point out there are many issues I
did not address.
I passed along my informal, March 5 observations to the Parkinson's list
so that others might glean some benefit from the impressions I gathered. I
am pleased that you estimate the potential impact of my report as
"widespread" but the modest feedback I've seen indicates to me that people
have received my report with the prudence and common sense that one should
apply to any information, scientific or not. And, as you yourself say in a
different context, "let the buyer beware."
Controlled experiments are essential to science. There can be no argument
here. But when seeking help for a loved one, one has to take other
considerations into account, including experience and intuition. Based on
over one hundred conversations with those who have had at least one
pallidotomy at the hands of Dr. Iacono, and based on other anecdotal
information I have collected, my intuition tells me the following:
1. Given my wife's relatively young age and good general health, I
guestimate the risk factor for even slight damage at the hands of Dr.
Iacono at under 5%.
2. Someone who has done about 400 pallidotomies with such good results
must have some edge as to skill, technique or knowledge (perhaps as yet
undeclared), over the others.
3. Someone who dares to do simultaneous bilateral pallidotomies while no
one else in the field does suggests to me that there is genuine confidence
at work here based on experience that I am in no position to evaluate
except for the results which appear to be excellent.
I have further reason to have confidence in this man that I have yet to
meet. My wife has been treated by the top neurologists in this country
who, in my view and in the view of my wife, have treated her rather like a
cypher and have failed to go beyond the conventional in her treatment. In
fact, they have left almost all short-term drug modulation up to her
(which makes sense since she's closest to the situation). But not until we
came into contact with Dr. Iacono's office last September did my wife get
significant relief from her severe off's and dyskenesia.
It may not be their job, nevertheless one of the doctors on Dr. Iacono's
team, on his own initiative, suggested tips and medication that have
effectively eliminated almost all of Aviva's off's and most of her
dyskenesia. When we told our local neurologists about this in the hope
that they might pass these tips along to their patients, the neurologists
didn't want to hear about it. So much for compassion. Concerning referral
for pallidotomy you wrote, "contrary to your article, it is not an issue
of personality of the physician or scientist." Well, I have discovered
that the experience of patients contradicts this, as does mine.
Personality, ego and self-interest play a much larger part in medical
judgment than any of us care to believe. Most abuses in science and
medcine are simply beyond our ability to scrutinize. When you consider that
Aviva has received more neurological help free of charge over the
telephone from Loma Linda than in ten years of expensive treatment
locally, it makes you think. Again, I am considering only the results
which in this case are observable and incontestable.
Official credentials aside, it seems obvious to me that Dr. Iacono is the
leader in the field today. I will frankly be much surprised if the results
of the Atlanta and Toronto teams come even close to those of Dr. Iacono's.
That there will be reams of data describing what was done will be small
consolation to patients who might have got better results at less cost and
with fewer hours on the operating table at Loma Linda.
Since you went to the trouble of writing me and succeeded in eliciting
this response, I think I shall post my response to the Parkinson's list
without mentioning your name. If you would like me to include your name
and address, please let me know right away. You are of course free to post
your letter to the list as well. I do not have a scanner, otherwise I'd
have offered to do it for you.
Sincerely,
David S. Devor
