Thank you, Mary Ann,for your support. Carole
--- Mary Ann Ryan <[log in to unmask]> wrote:
> Carol, I love what you have written here. My husband
> never went through DBS
> so I've had no personal experience with the procedure. I
> only know about
> the experiences of the list members.
>
> You've made the procedure and follow-up come alive for
> me. I'm wondering if
> DBS is going to be done as frequently in the future - it
> certainly doesn't
> sound like something I would like to go through. But
> then, I don't have PD.
> ----------
> God bless
> Mary Ann (CG Jamie 68/28 with PD, died 11/20/07)
> www.bentwillowfarm.org
>
> > Ray, I keep reading all these wonderful
> >
> > DBS success stories, and while I am sure that the
> patients
> > are sincere and well-intentioned, I think it is
> important
> > to understand that it is no walk in the park. I thought
> I
> > was well prepared for my October of 2007 surgery. After
> > all, I was an R.N., had attended a conference on the
> > subject, met with a Medtronic rep, spoken in person to
> > fellow PWP's who had had the operation, watched the
> movie,
> > and emailed trusted internet friends. I thought I was
> > prepared. I wasn't.
> > Oh, it wasn't what i was worried about- the head
> shaving,
> > the drilling through my skull, and the screwing in of
> the
> > halo apparatus. It was the little things- like the
> weight
> > of it as it held me pinned in one position like part of
> > some butterfly collection while my back spasms
> continued
> > for hours, during the pre-and post-op MRI's and the
> surgery
> > itself.
> > And the bigger things-like the programming that has
> been
> > going on for two months now, still with unsatisfactory
> > success. The man from Medtronic, who make the
> > neurotransformer, tells me there is no "book," and that
> he
> > services many of the major centers on the East Coast,
> and
> > that they "all do it differently." And that there are
> > literally thousands of settings.
> > In the meanwhile, as they tweak my settings yet again I
> > know how Elsa Lancaster got that streak of white hair
> in
> > "The Bride of Frankenstein."
> > In conclusion, let me say that I am not trying to
> > discourage anyone from DBS. It is one of the newer
> tools in
> > our fight against Parkinson's and I believe you should
> use
> > any weapon you can get as you battle this monster. I
> just
> > want to inject a dose of realism into the mix.
> > Carole Hercun
>
>
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