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Dear Listmembers, 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