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Hello --
This is a question that should be considered.  Co-morbidity (the presence of
other serious medical conditions/illnesses) is one of the major criteria
used to determine eligibility for DBS and how successful it might be.  While
it isn't always the case, many people develop other medical problems as they
age.  My feeling is that the point at which someone feels that they are
still doing fairly well managing their PD, but perhaps that may be starting
to change, is the time to discuss DBS in earnest with their neurologist.  It
isn't an impossible surgery, but it is rigorous and anything is usually
easier to endure when a person is a bit younger and stronger.  The rebound
time is less.  We began the process a year ago and wish we had had the
surgery then.  But due to circumstances with some of the medical personnel,
it was delayed for about 9 months.  Looking at it in hindsight, we would opt
for having it even earlier than a year ago.

We hear that the patients who had their surgery seven or eight years ago
during the trials and very early after DBS became more widely available are
still doing well and still receiving benefits from it.  This is good news.
A person with PD should probably consider how they may be doing in 7 or 8
years without surgery as compared to with it --along with how old they will
be at that time.  DBS used to be considered a last resort to help people
with PD, and many who had it were in the later stages or not in very good
physical condition to begin with.  But that thinking has changed radically
over the past few years.  Now some of the thinking within the medical
community is that it may help younger people with PD who are still working
but feeling that they are getting to a point that work is becoming
difficult, so that they are able to continue to work longer.

These are just a few thoughts on this subject.  Everyone is different and
everyone must be assessed individually.  We definitely would NOT advise
anyone to wait until a feeling of being desperate has taken over.  As for
brave . . . well, it isn't all that painful but it is tiring.  People
considering DBS should find the very best neurosurgical team that they can.

Kind regards,
Carole and Ted (57/45/40) -- bilateral DBS 2/05)



----- Original Message -----
From: "Chandrashekhar Nagarkar" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Wednesday, April 06, 2005 6:01 PM
Subject: RE DBS/STN Sooner rather than later


> Dear Carole
> This note has been in my drafts folder for some time, but now I wish to
return to the subject and explore
> further, can you or any one else help me to understand how one makes a
choice to have this sooner option.
> I seems to me that you either have to be extraordinarily brave or
desperate. Or can someone else wiser more experienced guide you?
>
> I agree with your arguments re DBS sooner vs. later
> However my question is how do you gauge when it is soon enough and how do
you
> determine when it is too late?
> At 56 I feel if I wait too long will be degenerating from a near normal
state for 75%
> of the time (with medication) to who knows what outcome, perhaps not later
but never , given that only 15%
> have it.
>
>
> ----------------------------------------------------------------------
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> Shekhar (57 nearly/50) UK
>

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