i guess mine is a success story.  i had the dbs surgery in april 2009, at johns hopkins. the surgeon had performed about 800 before mine.  i underwent scrupulous testing to see if i was a suitable candidate. even before the wires were connected,i noticed an incredible improvement. i got in and out of bed without thinking about it! in november 2009,i moved to madison wisconsin where i have my after care at the university of wisconsin medical school where the medical care is outstanding. when i go for calibration, which i can do as often as i feel the need, i spend as much as four hours having my neurostimulator adjusted.i take 1/4 parcopa 4 to 6 times a day,and every time it starts to creep up i get electronically adjusted. there are some negative: my voice has become even quieter than it was. and i have poor balance and i've fallen a couple of times.  but it is worth it not to have that incessant waggling of my upper body and head - feeling as tho my
 brains were jiggling around in my skull.
this last monday i saw a cousin i haven't seen since pre dbs and he said he couldn't believe i was the same person. 


hilary



--- On Wed, 3/23/11, Nigel Harland <[log in to unmask]> wrote:

> From: Nigel Harland <[log in to unmask]>
> Subject: Re: DBS
> To: [log in to unmask]
> Date: Wednesday, March 23, 2011, 6:13 AM
> Hi,
> I had an experimental bi-lateral DBS targetting the PPN
> area of the brain in Feb 2009, followed by a standard
> bi-lateral DBS in Jan 2010.
> To cut a very long and complicated story short, here I am
> over 2 years later and I have only just managed to get to a
> level which I would describe as better than I was pre-ops.
> On the plus side my tremor has disappeared, so has my
> dyskenesia, both of which were causing me great discomfort,
> on the negative side, I have not managed to reduce my
> Madopar ( sinemet equivalent) dosage, I presently take 250mg
> 3 times day, which is more than it was pre-op, and this has
> a very negative effect on my speech.
> And I still fall over which is something that the
> experimental ppn dbs was supposed to help.
> Conclusion: I suppose that I am overall better than I was
> pre-op, but it has been a long, hard journey.
> 
> Regards,
> Nigel Harland
> 
> 
> ----- Original Message ----- From: "Rose Jardim" <[log in to unmask]>
> To: <[log in to unmask]>
> Sent: Wednesday, March 23, 2011 7:35 AM
> Subject: Re: DBS
> 
> 
> > Hi Janet,
> > 
> > My Dad had DBS done at the end of November 2010. 
> You need to have an assessment done in order to assess
> whether you qualify as a good candidate for the
> surgery.  This involves a number of different opinions
> and tests.
> > 
> > There is alot of information on the surgery itself on
> the Internet freely available and on line support groups.
> > 
> > My Dad has finally settled down - this is after 3
> months of healing.  His reaction to the surgery was
> very bad.  He became very aggressive, very confused and
> very ill.  The Dr's did tell us to hang in and wait as
> it would all settle down.  At the time we did not trust
> this opinion but alas 3 months later and he is doing very
> well.
> > 
> > They are still adjusting the stimulator every week but
> his Parkinson symptoms have reduced significantly.  He
> battles to walk still due to muscle damage but he is working
> on it.
> > 
> > I wish you well with your research.
> > 
> > Kind regards
> > 
> > 
> > 
> > 
> > Rose Jardim
> > Jardim Chartered Accountants
> > (d) 011 894 2093 (m) 082 829 3014 (f) 086 568 3879
> > [log in to unmask]
> > 
> > 
> > 
> > -----Original Message-----
> > From: gervase81 <[log in to unmask]>
> > To: PARKINSN <[log in to unmask]>
> > Sent: Wed, Mar 23, 2011 8:00 am
> > Subject: DBS
> > 
> > 
> > I am writing for some advise and support. I am 58 and
> have been
> > iagnosed for 10 years. I was taking sinemet 4x day
> 25/250 and comtan
> > 00 mg 4x. My doctor recently changed me to stalevo
> 200mg. 5x per day.
> > y dyskiniseas on all the medications are getting bad
> and my on time is
> > etting less and less.  If lucky I might get 2
> hours of on time between
> > ach dose.  When tired or under stress sometimes
> the medicine doesn't
> > ven work.  My doctor is recommending DBS but I
> don't know what to do.
> > live on Long island outside of Manhattan.  My
> question is, has anyone
> > ad the surgery and did it help?  What is
> everyone's experience with
> > he surgery?   I 
>    plan on getting a second opinion can
> anyone
> > ecommend someone in this area?  My movement
> disorder doctor and the
> > urgeon are associated with North Shore University
> Hospital.  By the
> > ay, I am still working as a teacher but think I will
> have to give it
> > p shortly.
> > Janet
> >
> ----------------------------------------------------------------------
> > o sign-off Parkinsn send a message to: mailto:[log in to unmask]
> > n the body of the message put: signoff parkinsn
> > 
> > 
> >
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> 
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