Isn't it amazing how 2 stories about the same event can be
interpreted in such different ways,
I participated in the fetal transplant study which was done by a
different group. It is a longer term study- 2 years- And I did get
some relief from it but also developed the "runaway
dyskinesia" that Dr. Fahn talks of. I had
dyskinesia up until I had my DBS surgery until after the
procedure was done and continues to be asymtomatic on my left side
(unless the unit is turned off). The right side however does give
me some trouble. But imagine a life with no significant off times
and being able to skip a dose without turning into a statue if they
are 10 minutes late. There are plusses as well as minuses for
the surgery. But it certainly can be useful in some people as well
as a hazard in others. I find out whether I actually
got the cells in October
I knew there was a risk and was told from the beginning about
the double-blind nature of the experiment. I decided to go for it
for a number of reasons including there being nothing else in the
pipeline that was promising.and I wanted to be helpful to the
researchers as well as getting something for myself. When I had the
DBS surgery I felt that I had given and now it was time for me to get
something in return.
And those who get too excited about should remember that stem cells
are very experimental and work to date is small number of lab
animals. They are clearly promising but there is hope now that we
are getting close to a cure. Double blind studies are necessary to sort
out what we want to be the case from what actually is true. I
have some strong feelings on the subject and will share them with you all
at a later time.
At 10:45 AM 3/8/01 -0800, you wrote:
Date
sent:
Thu, 8 Mar 2001 01:21:05 -0500
Send reply to:
Parkinson's Information Exchange Network
<[log in to unmask]>
From:
Judith Richards <[log in to unmask]>
Organization:
@Home Network
Subject:
NEWS-Skull Surgery Fails for Parkinson's
To:
[log in to unmask]
> I just sent:
> "Brain Cell Transplants Help Parkinson's Patients" and now
we have...
>
>
> Skull Surgery Fails for Parkinson's
> By JANET McCONNAUGHEY, Associated Press Writer
>
> March 7, 2001 An experimental treatment for Parkinson's in which
holes
> are drilled in the skull and cells from aborted fetuses are
implanted
> in the brain does not cure the disease, according to a
controversial
> new study.
>
> The study had raised ethical questions because some participants,
for
> the sake of comparison, underwent sham surgery in which mere
> indentations were drilled in their heads.
>
> The implanted stem cells - cells that can develop into many types
of
> tissue - survived and grew into the right kind of brain cells.
But
> they did not help patients older than 60.
>
> Younger patients - who make up about 40 percent of the 60,000
people
> diagnosed each year in the United States - improved a bit, but
only
> for a year.
>
> After that, the cells apparently did their job too well in
some
> patients, causing excess movements because they produced more of
the
> needed nerve transmitter dopamine than the body could use.
>
This is exactly the reason that I have always been so
"conservative"
about "new advances" (pallidotomy, etc.). Here we have
the identical
study, published in the identical medical journal, with two
completely
different "spins" placed upon the same results by the lay
press.
Furthermore, this "breakthrough" was reported by *me* back
in
January, 2000 as part of a meeting which I attended of the
California
Association of Neurological Surgeons in San Francisco, where one of
the authors of this same study, Dr. Stanley Fahn, said the same
thing
(that the procedure didn't work in older patients, and that
dyskinesias
were a severe problem in the younger patients). He also stated that
he
didn't know *how long* the beneficial effects would last (and, over
a
year later, we are told that in some cases, the duration of benefit
was
temporary). Dr. Fahn said then (and I reported to the List in
January
2000) that cell implantation surgery "was not ready for prime
time".
Good medical research takes science. The best of intentions do
not
make things advance faster or better.
Best,
Bob
Robert A. Fink, M. D.
2500 Milvia Street Suite 222
Berkeley, California 94704-2636 USA
510-849-2555
PLEASE NOTE: Because of the takeover of IBMNET by
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The old <ibm.net> address will no longer
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YOUR ADDRESS BOOKS.
Charles T. Meyer, M.D.
Middleton, WI
PD DX 12 years (at age 44)
Age 56
