Margaret Tuchman on The Need for The Survey of PD Patients with DBS/STN Surgery
“This is our opportunity to use our collective experiences to provide not only a helping hand to all those who have had this surgery but also those who may be considering it. Until we find a cure, or at least improve the Quality of Life of each PD patient, we must explore, ask questions, and invest our—the patients'—time and effort.”
Margaret Tuchman, Bi-STN, 12/00, Board Member of Re-Wired for Life, and President of The Parkinson's Alliance.
As the Quality of Life issue becomes the primary consideration, PD patients reach out to sources available to help them make a choice about their next step: more pills, different combinations of pills, time interval changes, less protein, more rest, ad nauseam. Or, they consider the next big step: surgery!
But which surgery? A decade ago, pallidotomy was touted as the answer; and there was meager statistical information available pro or con. For the past few years, Deep Brain Stimulation (DBS) became the star. But which DBS, and where should one go for the best care? The big difference between Pallidotomy (ablative surgery) and DBS is that DBS does not cause irreversible damage to brain cells and is therefore – reversible. When the cure comes, the implanted devices can be removed.
And PDF patients find, as I did, that there is no collective depository of information about the types of surgery, the selection criteria of the patients, a description of patients’ condition before, during and after surgery, and the protocol each surgical team uses. There is no cumulative, organized statistical data, since each facility maintains their own records and decides whether or not to publish their own stats.
My decision to develop a list of questions to help PD patients make a decision and help chose the ‘right’ surgical team was aided by making contact with a small, but very knowledgeable group of patients. I wish to express gratitude to the ACTIVA Newsgroup members, Charles T. Meyer M.D., Mireille Lasternas, Klaus Haagen and others who had the vision to design and run a limited test of a prototype of the current survey. Andrew Mera, a non-PD person assumed the leadership role and spent many hours coordinating the work of the team.
The ACTIVA forum, the PIENO List, and the MGH Forum have been useful for individual PD patients to express their feelings, and to provide responses to other patients' queries, fears and doubts about the procedure. The list members’ valuable experience represent a wealth of information. The ACTIVA Newsgroup members recognized that a coordinated set of data could be obtained by polling list participants on a well-structured set of questions.
Additionally, an invaluable medical asset was added, through my association with the Rewired for Life Foundation. Dr. Patrick Kelly, M.D., F.A.C.S., Professor and Chairman, Department of Neurosurgery and Drs. A. Beric and D. Sterio neurophysiologists, Anne O'Sullivan, Administrator & Patricia Taverna RN, MA, ANP-C of The Center for the Study and Treatment of Movement Disorders at NYU Medical Center had formed a nonprofit foundation that offers education, information and support to groups of DBS/STN patients. I felt that asking for their sponsorship of the survey and placing it on the Re-Wired for Life web site would make the site the premier source of DBS/STN related information. The Patient Forum and FAQ sections could serve the needs of the growing population of DBS/STN patients.
Specifically, I would like to thank Dr. Aleksandar Beric, neurologist, neurophysiologist who has been an adviser in formulating the survey questions and is instrumental in promoting the survey to other movement centers for their patient population to complete either the on-line format or the paper and pen version.
If you or someone you know has had DBS/STN Surgery or are considering it, I invite you to visit the Re-Wired for Life Web site where you can learn more about the surgery, read answers to questions, join a forum, or participate in taking the survey.
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