Margaret Tuchman on DBS-STN Surgery, DBS Survey Results, and our new venture: DBS-STN.org
As the Quality of Life issue becomes the primary consideration, Parkinson 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; but, there was meager statistical information available pro or con. For the past few years, Deep Brain Stimulation (DBS) became the star. But which DBS should be considered?
There are three sites that are used to treat PD using deep brain stimulation: (1) the thalamus if the patient has tremors only; (2) the globus pallidus to ease dyskonesias resulting from the side effects of levodopa and rigidity; and (3) the subthalamus (STN), which is especially efffective if done bilaterally. DBS-STN has the capability to improve most of the motor symptoms of PD, including tremor, rigidity, balance, gait, and akinesia. Dyskinesias improve because the patient may not need any levodpa or much less than before surgery.
In December of 2000, I underwent DBS-STN at New York University Hospital. I know "it" works. For the majority of those who had DBS-STN surgery, they know "it" works, and they know that the quality of their life has dramatically improved. The question is how long will "it" work.
In 2002, I asked DBS patients to take the DBS-STN survey, a unique survey that was designed to collect and compare the individual circumstances leading up to, through, and after surgery. By having DBS patients register their experiences, improvements, and problems—with total anonymity—the survey helped answer that question.
I invite you to read the "The First Report" — the first summary of responses to the questions posed in the DBS/STN Patient Survey, dated July 2003 . While the information presented has no constraint or standard statistically validated double-blind random protocols, presenting the patients' unadulterated view is a novel and valuable approach that will benefit patients and individuals looking for more information on DBS/STN. This information will also prove valuable to the scientific and medical community.
Since "The First Report," the participants who completed the survey were contacted and asked if they were interested in participating in our first "focus" survey. Forty-nine patients responded. I invite you to read the "Focus 1 Report" which is dated January 2004.
I am also excited to announce the development of a new site called DBS-STN.org. This site will include FAQs, a forum to discuss DBS, additional focus surveys, and more.
Margaret Tuchman, President of The Parkinson Alliance and Founder of DBS-STN.org.
We are also looking to recruit additional DBS/STN patients who are at least 6 months out of surgery. Please have them call our office at 1-800-579-8440.