Thursday morning,
I got up this morning around 8, took my morning meds, and staggered
downstairs (my morning grogginess, not my PD), retrieved the N.Y. Times from
front doorstep (can't get along without "all the news that's fit to print"),
and settled in with a glass of grapefruit juice. Leaping out at me was (yet
another) front page article on PD and pallidotamies in a major national
newspaper. Needless to say, I dropped everything, including, almost, my
juice, and read the article.
Reactions:
(1) Whatever we may feel or believe about pallidotamies, pro or con,
enthusiastic, cautiously optimistic, skeptical, or opposed, Parkinson's
disease and the hundreds of thousands of PD sufferers across the US and
millions world-wide are getting attention and publicity from these articles
that money could not buy. The debate about this procedure is, I believe,
raising the public consciousness about the symptoms, effects on both patient
and family, and, indeed, the very existence of this devastating disorder.
(2) This raised consciousness (may the publicity continue!) can be
advantageous in securing the more adequate and equitable levels of funding
that are needed for research into curing PD.
(3) The mostly negative or cautionary focus in the NY Times article was
probably not a bad thing. We need to hear and be reminded of the fact that
pallidotamies can result and have resulted in unsuccessful or even
undesirable results. This obviously is a very delicate surgical procedure
which can vary depending, one might assume, on the skills and experience of
the surgeon, differences in technique and equipment, and subtle physical,
even anatomical, differences from one patient to another.
(4) I think the following won't be lost on the reading (non-PD) public:
what more dramatic demonstration can there be of the devastating effects of
PD than the fact that persons are willing to undergo delicate brain surgery
in order to regain some normalcy in their lives, some relief from their
symptoms?
(5) I personally find the following passages from the article to be
troubling regarding the neurosurgical community, highlighting the
unregulated, unstandardized aspect of the surgery (and thus one of its risks)
: "One neurologist who is just beginning to do the surgery, (name, position
and location given in article, omitted here), said his group had been getting
two or three calls an hour from patients wanting the operation." The
article continues: "Dr. William Langston, a neurologist who is director of
the Parkinson's Institute in Sunnyvale, California, said: 'The intensity is
quite hot. There is an air of almost hysteria, and I'm starting to see panic
in the medical community. There's a feeling that if we don't get on board,
we'll be left behind.' Dr. William Weiner, who directs the movement
disorders clinic at the University of Miami and is clinical director for the
National Parkinson's Foundation, said it was all too easy for surgeons to
climb on this particular bandwagon. 'Anyone trained in neurosurgery should
be able to do it,' Dr. Weiner said, speaking of the operation. Doctors say
the huge demand for the operation, which costs $20,000 to $40,000, depending
on where it is performed, is understandable." The balance of the paragraph
describes the numbers, symptoms and degenerative nature of PD.
(6) While it is obvious that any "new" (or rediscovered) neurosurgical
procedure has to be performed by neurosurgeons, and they have to start
somewhere (somebody has to be a particular doctor's first patient, and his
second, and so on), I suppose the quoted passages from the article point out
the fact that one of the judgments that has to be made (or should be) in
selecting a surgeon is his dedication to his patients and their well-being.
Surgery is an art and a skill. Surgeons, like everyone else, have different
personalities, different experience levels, different skill levels, and
different degrees of dedication. Bear these matters in mind when choosing a
surgeon, if you are considering this procedure.
Well... enough for now. I'll be interested to hear the reactions of others
in this ongoing discussion.
Best regards,
Larry Allen
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