I thought I would add some comments to Abe's response to the NYT.
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March 20, 1995
Editors, New York Times
New York, New York
Dear Editors:
The March 16, 1995 Times article on pallidotomy, a surgical treatment for
Parkinson's disease, differed markedly from the recent Wall Street Journal
article on the same procedure. The Journal article was positive, your
article was negative. Why the discrepancy?
The answer, not emphasized in either article, is patient selection and
operative technique. Pallidotomy as a treatment for Parkinson's disease is
fifty years old. The resurgence of interest is due to improved methods of
locating. But even after it is located, pallidotomy is not tonsillectomy or
herniorrhaphy. It cannot be done in any hospital by any surgeon.
ALB: I agree that patient selection is very important. I would put
selection of neurosurgeon to be more important than operative technique.
Given one selects technique, it then becomes which neurosurgeon of those
using the same technique. The same technique is not the same in the hands of
different neurosurgeons.
Patient selection is important. A surgeon quoted in your article couldn't
distinguish Multiple Sclerosis from Parkinson's disease. If he couldn't
distinguish the two he shouldn't have done the procedure. But what about
the more difficult task of distinguishing between Parkinson's disease and
the look-a-like disorders such as Progressive Supranuclear Palsy?
Striatonigral Degeneration? Multi-System Atrophy? Such distinctions are
necessary because the look-a-like disorders don't respond as well as
Parkinson's disease to pallidotomy.
ALB: I am not sure any of the neurosurgeons are expert in PD+ diseases. If
expert neurologists with histories of patients are only 85% accruate, where
does this put neurosurgeons? My complaint with neurosurgeons is that they
have been too willing to cut on selected PD+ patients. The patients are
desperate and the neurosergeons think (a) they may get luckly with their
great skills and (b) these are desperate patients a few months of good life
justifies the surgery and (c) this is research for the neurosurgeon. Those
are tough statements, but they apply almost accross the board, not only to
Iacono. I also know of patients who where not told by the neurologist they
had a PD+. Their neurologist slipped the issue by talking about Parkinson's
syndrom and always found an excuss for medication ineffectiveness. The
patinet, out of total frustration, goes to the neurosurgeon. Results can be
anything. The neurosurgeon is blamed for misdiagnosing PD+ and suffers a
poor result.
The pallidum is located using high field Magnetic Resonance Imaging (MRI),
a technique available almost anywhere in the United States. But locating
the pallidum is not enough. The pallidum must be distinguished from the
adjacent internal capsule. Failure to do so results in stroke. The
pallidum must be distinguished from the adjacent optic tract. Failure to do
so results in partial blindness. The internal pallidum must be
distinguished from the external pallidum. Failure to do so results in
increased, not decreased Parkinson symptoms. Finally the topography of the
internal pallidum must be mapped and its volume determined. Failure to do
so results in only partial relief of symptoms.
The pallidum is distinguished from its surrounding structures, the internal
is distinguished from the external pallidum and the topography of the
internal pallidum is defined through single-cell, intra-operative recordings
performed by a trained neurophysiologist. The difference between doing the
procedure with monitoring and without is the difference between the results
described in your article and the Journal's article.
ALB: There have been about five approaches to finding the "sweet spot" for
the pallidotomy. Laitinen, Bakey, Iacono, Dogali, xxxxx(sp) have different
methods for finding desired spot. I actually believe that all know the
correct target. None of these neurosurgeons have the same neurosurgeical
resources available. Dogali now claims he has sub mm accuracy in scaning
equipment. He has used it on his first pall in CA earlier this month on a
man from Mass. (Maurer ref and confirmed by Dogali by me). Laitinen is
conservative and often "misses." He is willing to redo the surgery and willl
get more aggressive the second time. Bakey has been very forunate in that he
has had DeLong to direct the work. As I understand it, DeLong has been
looking at the pall since 1990? Yet only 60+ surgeries have been done? That
is about one a month, yet they have been doing one a week lately. The
numbers are as flaky as Iacono's 500 pall. I would like to see patients
classified by disease and then qualify the precedures on like cases. Numbers
quoted by neurosurgeons always include all procedures. Failures are ofen
classified by non-PD disease and other complications. These statistics are
pure garbage to patients. Patients want to know how well patients with
similar symtoms did with the procedure. These are not available by any
method.
ALB: Now I will throw a real dirty-laundry item in the murkey water. It was
not that long ago that Abe stood on the same platform as Jacques and said the
Gamma Knife was god's (little g) gift to the Parkinson's patient. It was
reported in the APDA newsletter about the new wonders of this great device.
Laitinen was very adamit that the Gamma Knife would (1) never have been used
by Leksel for either the pall or the thal and (2) only doctors who didn't care
about life would use the GK on elderly patients for any reason. (You were
there when he said this.) I have never seen APDA tell its members in its
newsletter that the Gamma Knife fails and should be avoided. This is the
responsibility of the Medical Director or should I say it is the "right
thing" to do. I hate to say this, but when I see the list of speakers at the
"Good Sam" meeting in the Palms and see Dr. Young of Seattle who pushes the
Gamma Knife and the Mexican mauler of adrenal fame, Medrozo(sp) given equal
time with some respected names, it is a sham in my eyes. I think it puts
Good Sam neurosurgeons at their level which may or may not be the correct
case. The reasons they are a "Center for APDA" goes beyond me. As a
reasonably intelligent patient I could easily think this was another "snake
oil" offering.
ALB: Now I will never put the above paragraph in public print. It serves no
purpose. The pieces do need to be told to the patient community. By this I
mean, the PD community needs to be told that the Gamma Knife has failed
miserably. I do not expect to see a kiss on the hand of Jacques for
"researching this poor tool for the PD community and being fortwright about
its deficiency." I am not happy with Jacques and his fetal tissue adventures
either. This really gets me pissed because I know the names of his failures.
These are my friends and fellow suffers of this damm disease. Do understand
I hurt because I see fellow patients with real names told that some PET scan
says they are better. Yet, they have lost so much. I know the hurt and I
can feel the hurt expressed by these patients. If I kept records of phone
calls and conversations both before the "free" tests and after, the jury
would have ended the farse after about three surgeries.
ALB: Well, do understand their is a patient side to the argument. I would
like to think we are important. I am speaking as your friend and patient. I
have the utmost respect for you and wouldn't make these comments if I felt
otherwise. I also have a lot of respect for Abe. I am a big promoter of BNI
because you and Abe threat patients as people with real names and lives. I
am trying to get what could be your worst PD case to make an appointment with
you. It may not happen for a couple of months, but I think it will happen.
I wouldn't do it if I didn't think you could help. So please take all this
with a grain of pepper. I think I am going to fall asleep.
I do understand sometimes and at other times my dopamine deficiency gets the
best of me. It is nice to have an excuse when I need one.
Regards,
Alan
