Dear People, It's been a while since I posted, I've been keeping up to date reading the mail thanks to PIENO and been busy raising funds for research which is what we do at the Parkinson Alliance. I decided to have DBS at the end of last summer, I had a long talk with husband and friends and we agreed that this was a good temporary step to take until the cure is found. I had enough of the unpredictability of meds. Dyskinesia during the day and, my nightly bradykinesia with the accompanying stutter steps were the enemy. I needed to feel better NOW! The only question was, where to have it done?? I lucked out. The NYU School of Medicine,- a mere hour away - boasted an excellent surgical team. My friend, Jim Maurer, observed their precision teamwork first hand, he had scrubbed and was present for an actual procedure and his recommendation was to meet with Dr. Kelly and the team. We attended one of their seminars. In fact, I dragged along the editors of Voices from the Parking Lot: Joan & Stan Snyder and Jo and Dennis Greene. They were visiting NY for the Unity Walk and celebrating the publishing of our anthology, Voices from the Parking Lot. Anyway, on 12/28/00 I had bilateral STN. My stimulator was turned on two weeks after surgery and I've had 7 adjustments since. Each adjustment has produced improvement, some minor--some significant. This is where one has to be patient and persevere. I know that STN has not cured my "debilitating progressive condition", but sometimes I find it hard to believe that I am not disease free. I no longer have dyskinesia or bradykinesia with the accompanying stutter-steps. I haven't bumped into anything, nor fallen, I don't have the pain in my neck & shoulder, if I look in the mirror I see a symmetrical face, my left eyelid does not droop, I can smile, my voice is ok and I feel good. On the other hand, I still take the same amount of sinemet (9 x 10/100), though I've cut out Tasmar and halved my daily dose of cabergoline. So, I am feeling better than I have felt since I cannot remember when and I am taking less medication. I would like to quote from John Cottingham's post to support some very important points of the DBS/STN story: "It seems like Medtronics has developed a "Swiss Army knife" for neurosurgeons. It alone can't cure anything but used in conjunction with medication titration and proper programming can greatly improve the quality of life. That short of finding a cure, is very important. The pioneers in the list family who have had DBS generally have achieved good success but it requires patience and perseverance. I know of programs that offer DBS on a "carry-out" basis and others that offer shorter "on table" times but your priority should be on the accessibility of follow-up care and consultation. Most all of the institutional programs prefer that you receive your testing and follow-up care at their facility with their staff. Some travel great distances to participate but on the whole, it is best to wait until the procedure is offered in your area, since frequent programming visits can be necessary. The peer reviewed journals in the next five years will include studies done right now. Following up with the team you select ensures that the studies will be meaningful." There are a number of very important points here: My decision to have surgery came as a result of thorough research and fully understanding the procedure and post surgery adjustments. Dr. Baric, the neurophysiologist looked straight into my eyes during our pre-surgery visit and said: " commit right now that you will always be careful and not jeopardize the stimulator or the surgery. If you are unwilling to take this very seriously, I don't want to waste time, energy and money." The surgical team should include experienced neurophysiologist(s) who participate in the surgery AND provide the post-operative adjustments. The distance traveled to get on-going follow up is important, though quite a few STN patients fly in to New York to get their adjustments. People considering DBS/STN should actually handle the battery operated pulse generators and the steriotactic headgear. I thought the units were quite heavy and the "halo" was something that Hannibal Lecters of Silence of the Lambs should be wearing. As soon as FDA approves the use of the Medtronic stimulator and the battery operated pulse generators for Parkinson's, we can look forward to technical improvements of the instrumentation Some advancements are already in use in Europe. The one I am waiting for is being hooked up via phone & internet to the doctor, so she/he can adjust the patient video-phonically(my term) But the hardware is insignificant when contrasted to the value of the experience of the DBS/STN surgical team. I was fortunate in finding The NYU Center for the Study and Treatment of Movement Disorders, NYU School of Medicine: Dr. Patrick Kelly, M. D., F.A.C.S.,Professor and Chairman, Department of Neurosurgery, Dr. A. Beric, M.D., D. Sc. Associate Professor of Neurology, Director of Clinical Neurophysiology, Dr.D. Sterio, M.D., Ph.D., Research Associate Professor Department of Neurosurgery, Kenneth Perrine. PhD., ABCN, Research Assistant Professor, expert in clinical neuropsychology, David Eidelberg, M.D. Professor, Department of Neurology and Neurosurgery, authority on the use of functional brain imaging, Patricia Taverna, RN. MA. ANP-C, Adult Nurse Practitioner, and Anne O'Sullivan Administrator, who holds the whole team together, and is the contact for the patient/family for all issues and questions. My story would be incomplete if it did not include a WARNING. I am posting a separate message about my experience with Xanax (alprazolam). If anyone has comments or questions, please email me at [log in to unmask] and I will gladly answer your questions. Margaret 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