you bring up a good point, what is the definition of a successful DBS? SO many people have unrealistic expectations of their DBS. My question to those folks is ,"do you like your life better with your DBS On or off?" The over-whelming majority answer in the affirmative.
My DBS was stunningly successful, able to quit all my meds,no more dyinesia, dystonia, freezing etc. The only down side is I have some difficulty speaking now. It is a trade I will gladly make any time to be free of my worst PD symptoms.
Charlie
--- On Fri, 7/10/09, MyFirstname Mylastname <[log in to unmask]> wrote:
> From: MyFirstname Mylastname <[log in to unmask]>
> Subject: Re: thoughts about DBS?
> To: [log in to unmask]
> Date: Friday, July 10, 2009, 6:53 AM
> My husband had DBS-STN anout 8 months
> ago. He was at a point where the traditional Parkinson's
> meds were not working. His periods of freezing were becoming
> more frequent, requiring frequent use of a wheelchair, and
> pain from muscle tightening. Mobility-wise he is greatly
> improved, but has had to maintain his regular schedule of
> Stalevo, Requip, and Amandatine. His speech has worsened
> somewhat but is quite understandable. He is still having his
> stimulators adjusted as he feels sometimes like he has "lead
> in his feet". His neurologist is going slowly with the
> adjustment, as in the past he has had severe dyskinesias if
> she raises to current too much. There has been a slow, but
> progressive cognitive decline over the years, so I'm not
> sure if the DBS affected his mentation. It is certainly much
> easier to be out and about as he no longer has freezing
> episodes. For that alone, the DBS was worth it. His support
> group members who have had DBS encourages him to be patient,
> as it does !
> take time to adjust the stimulators optimally. Hope this
> helps.
>
>
> -----Original Message-----
> From: Black Charles <[log in to unmask]>
> To: [log in to unmask]
> Sent: Thu, Jul 9, 2009 1:16 pm
> Subject: Re: thoughts about DBS?
>
>
>
> ASSUMING agood team (EXTREMELY important!)
> Your probability of a good outcome is very good, probably
> in excess of 85%
> The PPN target area is experiemental target area for gait
> and balance. The
> problem with it it is not a defined area of the brain as is
> the STN, so it is
> more dificult to target.
> I tell prospective DBS'ers if they are having second
> thoughts, they probabbly
> are not ready for a DBS. WHen you are ready , you will know
> it.
>
> CHArlie Black, bi-lateral DBS-STN in 2002 annd still
> working well!
>
>
>
>
>
> --- On Thu, 7/9/09, mschild <[log in to unmask]>
> wrote:
> > From: mschild <[log in to unmask]>
> > Subject: thoughts about DBS?
> > To: [log in to unmask]
> > Date: Thursday, July 9, 2009, 1:40 AM
> > A french PWP who had been asked to
> > consider DBS by her neurologist a year ago,
> > went to consult a few days ago, still not too
> > convinced.? As she was talking
> > about her doubts, her neuro told her to wait for there
> was
> > quite a bit of
> > reconsideration about DBS at the moment.
> > I know that in France and England, there is a trial
> going
> > on with stimulation
> > of pediculopontine nucleus but I hadn't heard about
> more
> > serious doubts.
> > When DBS was first performed here, they used to say
> it
> > would benefit a good
> > 50% of PWP. Now they talk about 5%.
> > Has anyone heard more about all this?
> > maryse
> >
> >
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