Re: DBS Surgery

My husband, Tom, has had two DBS surgeries at UC San Francisco. He had
no tremor with PD, rather more slowness, stiffness, etc.  The
surgeries helped immensely.  I cannot tell whether he has taken his
meds or not anymore, because he is almost always "on".  His
medications have been greatly reduced, Sinement by 75%, Permax
completely eliminated and Comtan down 50%.

There is one thing that is contra-indicated for this surgery is mental
confusion.  Looking back, I think he may been beginning that stage,
just not really evident. That is his challenge now, but seems to be
helped by Aricept.

I think we would have made the same decision, and are happy we went
forward with the surgeries.

Hope this helps.  Claire
On 4/6/06, rayilynlee <[log in to unmask]> wrote:
> Pauline
>
> The one DBS and the other redo of left side of brain stopped my tremors
> which are now returning on right leg, my "good" side.  I may need to be
> reprogrammed or the disease may have just progressed, it's been almost 3
> years since surgeries.  meds didn't help but once before and didn't help
> after DBS so I don't take them.  my speech difficulties started with 2nd
> surgery. my fine motors skills, movement were not improved and  are getting
> worse, but it is impossible to know if I would be able to move at all w/out
> DBS.  Also, everyone gets a different result, from complete failure to
> almost getting your life back.  The way I got through the surgeries was by
> hoping I would die on the operating table.  DBS is scarey not only because
> you must be awake, but because the outcome is so uncertain.  I don't see how
> I could have lived any longer wih those tremors.  DBS is especially
> successful treating essential tremor and Parkinson's tremor, but I have
> heard it helps other symptoms and people need fewer meds.  although dystonia
> in toes was not helped,  left foot straightend out on operating table.  I
> once swore I  would never have this surgery but ended up doing it twice,
> coming through with flying colors with a 'bad' attitude.  if she can, it is
> very important to get a competent surgeon and team. Good luck, Ray
> ----- Original Message -----
> From: "Pauline Spaulding" <[log in to unmask]>
> To: <[log in to unmask]>
> Sent: Wednesday, April 05, 2006 9:37 AM
> Subject: Re: Parkinson's disease
>
>
> Hi you say that the DBS surgery helped with the tremors.  Is that all the
> two surgery's helped?  I have a very close surgery whom we have all been
> trying to get her to have it but to no avail. she is scared to have it.  I
> was hoping to show her some success stories to encourage her to have it.
>
> rayilynlee <[log in to unmask]> wrote:  Hi Sabrina, I went with the "Unlock
> the Cells" T-shirt because I feel like a
> prisoner. The PD meds don't help me at all, so I am always "OFF", but I
> know what you mean.. I had DBS brain surgery twice and that helped with
> the tremors. How about "I'm all shook up" for a T-shirt for Parkinson's?
> I'm putting your email on my Parkinson's List.
>
> Thanks and good luck.
> ((((Sabrina)))))
> Ray
> ----- Original Message -----
> From:
> To: "rayilynlee"
> Sent: Tuesday, April 04, 2006 6:08 AM
> Subject: Re: Parkinson's disease
>
>
> > hi. thanks for writing! I do have a shirt for Parkinson's - "Turn me on"
> > got the idea when I met Michael J Fox and he explained the on state
> > and off state with medication.
> >
> > attached is a pic to see... also, I have them on my site with a
> > description at
> > http://freethestemcells.com/index-4.html
> >
> > plus more styles at www.cafepress.com/getstemmed
> >
> > let me know what you think :)
> >
> > Sabrina Cohen
> > SabCo Productions
> > Advertising/Media Relations
> > 305.968.8024
> > www.freethestemcells.com
> > www.cafepress.com/getstemmed
> >
> >
> >
> >>
> >> From: "rayilynlee"
> >> Date: 2006/04/03 Mon PM 07:19:05 EDT
> >> To:
> >> Subject: Parkinson's disease
> >>
> >> great idea Sabrina, do you have anything for Parkinson's disease? I am
> >> a "lifer" who is a ten year
> > prisoner. Survived ovarian cancer in 1980. Write and advocate constantly
> > for hESCR.
> >> Good luck
> >> Rayilyn Brown
> >> Surprise AZ 85374
> >> [log in to unmask]
> >>
> >
> >
>
>
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