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I can just feel you guys breathing a sigh of relief after you have decided
against DBS.  I don't think it will ever become a  "routine" treatment for
PD because of the yuck and fear factors.   After  four years I still have a
hard time adjusting to the idea that I have wires in my brain!!!  The leads
feel like huge veins under my scalp and are getting bigger.

To get the experience you would want your neurosurgeon to have you would
want him/her to have done hundreds of these surgeries......on someone else.
I'm sorry to see an overselling of this procedure.  However, it is not all
about profit....I'm a living example of its moderate success.  Don't you
just wish we could take a pill?

http://www.dbs-stn.org is a good site where you can ask questions about DBS.

Ray
----- Original Message -----
From: "Alan Hahn" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Wednesday, April 18, 2007 1:53 PM
Subject: Re: DBS for early stage PD?


I have had PD for 15 years, I'm now 57.  My views on the cause and
treatments for PD have totally changed over the years. I have to agree with
Greg, its all about profit. In my area a local Medical Center may be closing
their PD dept., instead they will promote their Stroke facilities, more
money to be made.

  Check out this site,
   http://www.parkinsons-success.com/

  Google "NUCCA"

  Read everything you can find on nucca.

  Your views may change also.



Greg Wasson <[log in to unmask]> wrote:   Harvey,

I have had PD for 12+ years and although I have to use a countdown timer
watch to make sure I redose my sinemet and comtan every 2 and 1/2 hours to
make sure I don't turn into a statue for a few hours as I get back "on" if I
am late with a redose, I still am not seriously considering DBS yet. That
day may well come, but not yet.

Yes, many lives have been measurably improved by DBS surgery. But I have
also known many persons to have had to undergo successive surgeries because
of infection, persons whose voices have been severely damaged by a slight
misplacement of the lead wires during the surgery, as well as people for
whom the benefits were minimal at best. Not to mention this is surgery to
the midbrain with one's head bolted to an operating table.

I would also raise the question of why DBS is now being promoted so heavily
for early stage PD when it was originally promoted as an option to be
considered only when traditional PD medications had ceased to be realiably
effective. Just last night I saw an ad extolling DBS for PD on television -
the surgical version of the much criticised "direct to patient" advertising
by big Pharma for prescription drugs like lipitor and celebrex and many
others (including now Requip).

I may be cynical, but I think it is important to realize that not only is
DBS a big and very profitable business these days, it is also a product
which clearly has a shelf life. That is, as encouraging clinical trials
continue for ceregene, spheramine, and other therapies that may soon
actually retard or reverse the progress of PD rather than merely mask
symptoms (which is as true for DBS brain surgery as it is for sinemet),
physicians and clinics and companies like Medtronic (which manufactures the
equipment used in the surgery) know that as soon as one of these new
therapies hits the market, the market for DBS will shrink faster than
shallow pool of water on a hot summer day. Market considerations drive the
promotion of any product, and DBS is nothing if not a product. And lest we
overestimate the purity of those in the medical and medical products
community, the recent scandal involving accusations of payoffs in the
millions to Doctors in Wisconsin by Medtronic sales
reps should serve as a sobering example that if Diogenes were still
wandering around looking for an honest man, he probably wouldn't start with
Hippocrates.

For what it's worth,

Greg


----- Original Message ----
From: H Rosenfeld
---------------------------------

To: [log in to unmask]
Sent: Sunday, April 15, 2007 10:50:14 PM
Subject: DBS for early stage PD?


In the January, 2007 issue of Neurology contains a reference to the
application of DBS for early stage PD patients.

Results of the study seem impressive: "Quality of life was improved
by 24% in surgical and 0% in nonsurgical patients (p < 0.05). After
18 months, the severity of parkinsonian motor signs "off" medication,
levodopa-induced motor complications, and daily levodopa dose were
reduced by 69%, 83%, and 57% in operated patients and increased by
29%, 15%, and 12% in the group with medical treatment only (p <
0.001). Adverse events were mild or transient, and overall
psychiatric morbidity and anxiety improved in the surgical group.

CONCLUSIONS: Subthalamic nucleus stimulation should be considered a
therapeutic option early in the course of Parkinson disease."

I was diagnosed with PD five years ago. My current symptoms include
annoying tremors of my right hand and right foot which medications
control to some degree. My neurologist has suggested I consult with
another specialist about assessing the potential benefit of DBS.
Many on our list have benefited from DBS, but up to this point DBS
was only applied in later stage PD patients. I would like to reduce
the tremors but I am not thrilled with brain surgery when the
symptoms are annoying and not debilitating. Is the benefit worth the
risks?

Harvey Rosenfeld

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