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.
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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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