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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 >[log in to unmask] > > >The Parkinson Alliance grows your donation >........twice the research for your dollar! > >The Parkinson Alliance >211 College Rd E. - 3rd Fl >Princeton, NJ 08540 >ph 800.579-8440 >fax 609-688--0875 >[log in to unmask] >www.parkinsonalliance.net > >---------------------------------------------------------------------- >To sign-off Parkinsn send a message to: mailto:[log in to unmask] >In the body of the message put: signoff parkinsn > > Yours and His David L Moreland ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn