Dr. Chris:
IMO the ? of WHERE is most useful in finding out what
centers are doing the surgery. It is not public
knowledge that some hospitals perform DBS, particularly
of the STN.
Unfortunately whether the results are consistent has
MANY variables just as there are with other PD
treatments.
1. Every patient is in a different, unique stage of PD.
Some may have reached a "stable" plateau; other are
continuing to deteriorate.
2. There are instances where the very first surgeries
were very successful, later ones not as good, and even
later ones again very successful.
3. Did the doctor do each procedure exactly the same
way? Only the Dr. knows. When he did his first one it
was based on the best knowledge available at the time.
A year later he may do it very slightly different based
on experience of himself and others.
4. The variability may be due to complications, whether
very mild or somewhat more severe. That is a risk you
take with ANY surgery.
5. The variability may be due to pre-existing non-PD
conditions that may have been masked by the more
dominate PD symptoms.
I believe the most important factor is the competence of
the brain surgeon in general. If he is an excellent
surgeon for other procedures the chances are DBS surgery
will also be successful. Steve was his Dr.'s very first
DBS STN patient --- his results are excellent but not
"perfect". He can now do nearly anything he could do
before PD --- but he is 6 years older and over 50. He
probably would no longer be playing on a slow-pitch
softball team even if he did not have PD.
The final question is: What is "perfect"? What is
"perfect" for one person may not be "perfect" for the
next. While my brother's condition is not "perfect" it
is such a dramatic improvement that most of the time you
would have no idea he has PD or any other serious
medical problem.
I think the DBS patient wants to be like they were
before PD. They "forget" that they have aged 5, 10, 15,
or 20 years since diagnosis with PD. The PD has
"hidden" much of the aging process.
Steve says you learn to accept a setting that is not
"perfect" if you think about what you were like JUST
BEFORE the surgery. The process of getting a good
setting --- given the healthcare structure in the US ---
can be a tedious process --- but worth it.
The doctors are learning right along with the patients.
Just some other things to consider.
Paul
----- Original Message -----
From: Chris van der Linden <[log in to unmask]>
To: <[log in to unmask]>
Sent: Tuesday, November 30, 1999 5:07 AM
Subject: Re: DBS SURVEY
{Previous message -- in part}
I would suggest that you add the following questions to
the survey:
WHERE WAS THE SURGERY PERFORMED? I believe this is an
improtant question,
because if it appears that several patients do not have
good results it
tells you something about the quality of the surgery or
the post-operative
care. Conversely, if the results are excellent in a
specific center future
patients may have some idea about the difference in
results in different
centers!!
Chris van der Linden
