Re: DBS/STN EXPERIENCES

[David Moreland <davelm@xxxxxxxxx>]

At 10:18 PM 6/25/2001 -0400, you wrote:
>Dear Listmembers,\

I have one question. Can a person who has had a bilateral pallidotomy have
dBS and if he/she does, is it likely to do him/her any good? I had a
bilateral pallidotomy nearly six years ago I still ha ve very little
dyskinesia.


>I had bi-STN at NYU, Dr. Kelly was my surgeon and Drs. Beric
>and Stereo, the neurophysiologists, completed this A-1 team.
>
>As a new convert, I am zealous, but will refrain from
>proselytizing - the decision to have brain surgery is
>serious and personal.  I just wanted to respond to Diane
>Leeds' email and some of the questions asked by  Antonio and
>Greg.
>
>To Diane Leeds -
>Congratulations Diane -- your successful bilateral STN
>places you among a growing number of veterans who could
>receive medals for valor.  The total number of us is
>unknown, but we all share certain experiences both pre and
>post operatively. I can assure you that you will continue to
>find expected and serendipitous evidence as a result of your
>surgery. On June 28 I will celebrate my sixth month
>anniversary of bilateral STN. I will show up at the
>neurophysiologist's  office having been off my PD meds and
>with my stimulators turned off for 12 hours.   A video
>taping will be done of doing the usual PD tasks we all know
>& love. I will be assessed in my "pure" state of PD. I don't
>know how I will feel, but I will have the security of the
>stimulators coming to the rescue - and that's a real
>comfort.
>
>I am excited about the 'science' of this exercise - I will
>have had video and timing exercises done before surgery in
>"ON" and "OFF" states an now 6 months after surgery in "ON"
>(meds and stims) and "OFF" (no meds and no stims). So, we
>will have a clean value of the surgery's effects.
>
>Participating in this study increases my curiosity about all
>the possible data available from our global "dbs/stn
>veterans" and how we might benefit from sharing basic
>information. Uh oh, I am getting scared, I feel the birth of
>a survey...............
>
>To Antonio Corta:
>Your confusion about the qualifications for DBS/STN; the
>particulars about the surgery: i.e., placement and number of
>the battery operated stimulator implanted; and the timing &
>sequence of the different sections of surgery is very
>understandable.
>
>Antonio wrote:
>>snip
>>I will have a similar surgery on June 29th.Because of that,
>>I'm very interested in all kind of details. Basically the
>goal is the same, to implant two electrodes in the
>Subthalamic Nucleus, a structure no >longer of 6mm at both
>sides of the body.
>>I find amazing some procedure's differences:
>
>>1.-You had the first side done about two months ago and the
>second just last week.
>>I'll have both sides in one day and two days after, the
>placing of definitive batteries or stimulators.
>
>>2.- You had to wait 2 months to have the stimulators on
>>I'll have them on since next day after first surgery.
>provissionally
>>I'm  50 years old, PD diagnosed 1979. My main problem is
>sudden, hard fluctuations on-off. I know than every one of
>us is a singular case but I >see such a strong different
>criteria about how to do it that either one team is too
>risky or the other too conservative.
>
>Margaret's reply:
>The surgical process I experienced was: 4 hrs., while awake,
>placement of probes bilaterally, double checking to confirm
>location with an x-ray and then while knocked out, they
>inserted the 2  battery/stims on either side of my chest.
>This part lasted less than 2 hrs.  I was turned on after two
>weeks during a separate visit to the neurophysiologists
>office
>
>Antonio:
>>snip
>>Are not statistics available about these particular points
>and about the general results of every team and a systematic
>>monitoring on the variations of symptoms trough months and
>years.?  I feel that every surgery team should have at
>disposal of every potential >"client" its results in a
>standard and understandable form. If possible done by an
>independent qualified medical team.
>
>There are NO systematic monitoring nor stats available on
>anything. At best, the surgical/neurophysiological team will
>give the prospective patient their own list of patients and
>the successes/problems they experienced --- As if we haven't
>been cautioned enough about the individual unique condition
>of every PWP, now we can factor in that every surgery is a
>stand-alone.  No 2 surgeons share the same protocol.
>Adjustments are a combination of science & art and are more
>key to the  success of the whole experience than the surgery
>itself. We, the patients, will have to insist upon the
>quality of our treatment.
>
>Good Luck Antonio in your newly balanced body.
>
>and Greg Leeman asks:
>>I have a question, can a person who has had a bilateral.
>Palidotomy also have dbs? Will it do that person any good?
>
>To the best of my knowledge, the answers are: Yes & yes -
>but remember that there is not a common protocol among
>surgeons. Please note that I am not representing a medical
>opinion, only reflecting on my own experiences.
>
>Regards,
>Margaret
>
>dx 1980, biSTN 12/2000 - searching for answers
>mtuchman@xxxxxxxxxxxxx
>
>
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>........twice the research for your dollar!
>
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Yours and His
David L Moreland

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