George....
For what it's worth....
I had my pallidotomy in Oct. of '94, at Loma Linda University Med Center. It
was performed by Dr .Gary Heit of Stanford University who was at Loma Linda on
a Fellowship to learn the procedure from Loma Linda's Dr .Robert Iacono.
I had my post-surgical visits with Dr. Iacono as Dr. Heit had gone back to his
own domain at Stanford where he's presumably performing pallidotomies on other
Parkies such as myself (it'd sure be a terrible waste of a terrific talent if
he wasn't!)
Both of my post-surgical visits with Dr. Iacono found him busy training more
neurosurgeons from the U. of Kansas and another well known university med
school (the name escapes me) in the pallidotomy procedure.
Soooo... based upon that, I know there were at least three additional medical
teams doing pallidotomies by the time you had your surgery.
Barb Mallut (member if good standing of the "Hole in the Head Bunch")
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From: Parkinson's Information Exchange on behalf of George Lussier
Sent: Saturday, November 29, 1997 3:33 AM
To: Multiple recipients of list PARKINSN
Subject: A Trip Down Pallidotomy"s Memory Lane
Dear Colleagues,
In the next couple of weeks I and three other members of my local PD
support group will have the opportunity to talk with a reporter from the
local newspaper. It has a good circulation and the resulting article could
get wider distribution because the newspaper is part of a chain.[and the
reporter lives a few blocks away from me althought I've never met her] The
focus will be on PD Support
Groups and she may be able to do a "side-bar story on Pallidotomies and
the development of my Video tape.
I have a bit of experience talking with reporters and I hate being
unclear about my facts. I would appreciate your help in clarifying a few
points. First of all, when I had my first Pallidotomy
[August 1995] I think there were 5 Centers in North America doing them.
[The Toronto Hospital, Emory {Alanta], Loma Linda Medical Center [Calif],
NYU Medical Center and my favorite, the Mass. General [Boston]. Did I leave
anyone out? This is in 1995. According to a list I picked off The Parkinson
Web
there are now at least 26 Centers plus those outside N.A..Are there more?
Does anyone have an up to date list of name and address? Quite the growth
industry I would say. Once insurence companies began paying it seemed that
the market expanded considerable.
An interesting aside is to be found is that while the growth rate for
new centers is increasing rapidly the more established ones may be slowing
down the number of procedures they are doing. I know [that is, it is my
impression] at the Mass.General they have turned down a few PWP they might
have done in the past. [ And I can assure you that they were never in a
rush...it took me 13 months of badgering them before they would do my
second side ] There seems to be an increase in the complication rate mainly
due to the less experienced centers. Am I way off base here??
On the issue of support groups I'm uncertain about who is our "Parent"
organization. No one in my group seems to understand the relationship to
the national organazations; one of whom seems to claim us. You will forgive
me for my uncertainty but this is only my second year in a support group.
One last question...I 've been considering doing a video on my support
group but I can't find an example of the kind I would like to do. By that I
mean I envision a story line that would include a section on the functions
of support groups but also follow a couple of individuals through the year;
one who is doing well and one who is not doing well. The latter could
almost qualify as a documentary that could be used try and convince funding
resources of our needs and as a training tool for medical types. Is anyone
aware of a resourse that could give me a reasonable listing of videos? I've
"surfed" the net and finding 1,345,671 articles does not help one bit, I've
not yet learned to really refine my searches. Any thoughts would be
welcomed.
I know there are a couple of other questions floating somewhere in my
holey brain but I can't pull them together. Next time.
Thanks for walking down memory lane with me [bet you didn't know it was
"BACKWARD WALKING" but that where memories are stored].
my best
george
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