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Retired

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ABC's program "The Miracle Workers" presented a segment on a young girl with Tourette who received Deep Brain Stimulation.

DBS (Deep Brain Stimulation) is a neurological procedure where electrodes deliver an electrical pulse to brain cells.

Read THIS OVERVIEW of DBS by Dr. B. Duncan McKinlay, Psychologist of London, Ontario.

The official position of the Tourette Syndrome Foundation of Canada on DBS can be read HERE

In the U.S. the Tourette Syndrome Association publishes this statement on DBS.
 

Retired

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The Tourette Syndrome Association issued this following comment on recently televised stories of patients receiving DBS:

Tuesday, March 21, 2006

COMMENTS ON "MEDICAL INCREDIBLE" AND "MIRACLE WORKERS"

Coincidentally, two separate and quite different programs dealing with two severely affected patients with TS who underwent deep brain stimulation (DBS) surgery aired recently on the same evening (Discovery Health and ABC). Please click here for TSA's comments on these programs.

"Medical Incredible" producers made a point of emphasizing the experimental and potentially risky and dangerous outcomes that could occur with this invasive brain operation that has been essentially untried among people with TS. They wisely included interviews with the two physicians involved in the operation who both helped viewers understand the highly experimental nature of the procedure. Also mentioned was the fact that the gentleman featured, Steve Blackman, age 50, was facing paralysis due to damage from his lifelong violent tics, and all other options had not helped him. It was stated that in 2004, this was the worst case of TS ever recorded. His tics were debilitating, tormenting and life-threatening.

Mr. Blackman, whose mother is one of TSA's original members, contacted the Association to express his disappointment because several statements that were filmed and important to him, were cut out of the final version.

"This surgery is not a miracle cure all for everybody with TS," Mr. Blackman stressed to TSA. "People need to be properly screened and warned about its potential danger-brain surgery is nothing to laugh about. This was my last resort-my TS could have left me paralyzed."

ABC's "Miracle Workers" featured a young woman, Emily Bresler, age 19, with very severe and violent symptoms and her TS was not a typical, but rather an unfortunate, extremely rare case. DBS was, for her, a last resort after having tried other treatments and medications since her diagnosis at the age of 8. The procedure was described multiple times as "fascinating," "exciting," and as a "cure" for Tourette Syndrome. TSA Medical Advisors caution that there is no consensus yet as to the precise target for the electrode implantation (see TSA's statement on DBS here). For the sake of a balanced view, this critical fact should have been mentioned. Rather the producers and editors included such statements as can "get rid of her tics forever" and indicated that it was a matter of finding just the "right place" for implantation.

Thankfully, we've been told by the family that Emily is doing well-while not symptom free, at this writing her symptoms have diminished and she is off TS medications.

TSA will continue to follow both these and other DBS cases very closely, and the Association will continue to pursue publication of guidelines for the DBS procedure on patients with TS.
 
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