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Two programs aired on national television in March, 2006, featuring brain stimulation surgery (DBS) for patients severely affected by Tourette Syndrome (an extremely rare minority).
Medical Incredible on Discovery Health cable channel, featured a 50-year-old man with severe Tourette Syndrome, who had the Deep Brain Stimulation implant surgery at Yale University. Miracle Workers on ABC, featured a 19-year-old woman who also underwent the DBS surgery. The Tourette Syndrome Association was not involved in the development of either of these programs; however, the Medical Incredible program featured the patient of a well-respected Tourette syndrome expert from one of the premiere Tourette's clinics in the world.
Before the two segments aired on March 13th, the TSA issued a news release about the procedure and the programs, stating that DBS "should be viewed as experimental treatment" for "a very small minority of severely affected people with TS". After the shows aired, the TSA issued a commentary.
You can see an illustration and description of Deep Brain Stimulation here. The surgery is more established as a treatment for Parkinson's than it is for Tourette's: a discussion of the surgery and some of the problems encountered with its use can be read here. More information about the risks associated with DBS is provided by WeMove.org.
You can read the Tourette Syndrome Association statement on Deep Brain Stimulation here. Neal R Swerdlow, MD, PhD, Department of Psychiatry, UCSD School of Medicine, and the outgoing chairman of the TSA Scientific Advisory Board, commented in Tourette Syndrome: Current Controversies and the Battlefield Landscape, Current Neurology and Neuroscience Reports, 2005, 5:329-331
"The most recent controversy in TS treatment relates to the use of deep brain stimulation (DBS). Effective in Parkinson's disease and some dystonias, DBS has been used in only a handful of TS patients, with one of them receiving high-profile media coverage. Neither the efficacy nor the safety of DBS in TS is known, and neither electrode placement nor stimulation parameters have been studied systematically. A TS Association task force is in the process of publishing recommendations on these issues, as well as on others related to DBS trials, including subject selection criteria and neuroimaging protocols."
The Tourette Syndrome Association, Medical Letter 2004, pages 22-23, contained a discussion of Deep Brain Stimulation for Tourette's Syndrome, "Issue of the Issue," authored by Donald L. Gilbert, M.D., M.S. Some excerpts from that discussion are included here.
"DBS was approved in the US for Parkinson's Disease and Essential Tremor in 1997, and approved for Idiopathic Dystonia in 2003. DBS is not approved for Tourette Syndrome." Deep Brain Stimulation should be considered "highly experimental" for several reasons:
• "the best placement of the stimulator in the brain is uncertain".
• "the Cleveland-area patient who received DBS manifested symptoms that are unusual, even in severe TS," so the benefit to this "unusual patient may not occur in other patients with TS".
• three adults showed less benefit from DBS in the Netherlands. "DBS is not free of adverse effects ... there may be serious short-term (bleeding in the brain, infection) and long-term (device failure, need for surgery to replace batteries, other unknown outcomes) risks". "We do not know whether ... complications will occur in TS patients with head and neck tics", which could cause "DBS electrodes to break or erode through the skin at a very high rate".
• "most patients that seek medical attention for TS are children or adolescents", but symptoms "often get milder in late teenage or adults years". It is not currently possible to predict which children will have severe symptoms in later life. "The use of DBS in severely affected children or adolescents is not warranted".
• the procedure requires long-term, expert monitoring, is expensive, and is not currently covered by insurance.
• "conclusions about short and long term benefit of DBS for severe TS are premature".
Miracle Workers: some comments
The March 13, 2006, ABC, Season 1, Episode 2 airing of Miracle Workers featured a 19-year-old woman from Poway, California, Emily Bresler. Emily has a severe case of Tourette syndrome, which is extremely rare in adulthood, since tics remit or improve for most children with Tourette's as they pass through adolescence. Emily acknowledges that 3/4 of people with tics "grow out of it", and that she is in the "unlucky minority". Emily's mother says, "she's hurting herself, and I can't take it anymore". When some of Emily's tics are shown, her mom says, "every time you do that, it hurts me". Her father, who had Tourette's syndrome as a youngster, mentions the guilt he lives with for transmitting the hereditary condition to Emily. Parental guilt, or parental difficulty in accepting tics, is a factor in the clinical care of Tourette's syndrome patients. However, unlike some of the sensationalized television talk shows about "extreme disorders", we were shown a loving, supportive family, and Emily's tics were portrayed factually, without sensationalism.
Although it is mentioned that tics as severe as Emily's occur in an "unlucky minority", the show never discusses how extremely rare it is, or mentions a more typical course of tic severity for most patients with Tourette's syndrome. Emily is described by one of the nurses associated with the show as having one of the severest cases of Tourette's she has ever encountered: it is not clear how many cases a nurse who may not be affiliated with a Tourette's specialty clinic may have seen. Emily's symptoms, as shown, did not strike this viewer as one of the severest cases ever seen.
One of the doctors states that tics come from "abnormal impulses from a small area of the brain", the size of a bb. The exact brain mechanisms involved in Tourette's syndrome are not known with great precision, and the TSA has indicated that the best placement of the stimulator is uncertain. The very serious risks, and ongoing issues with using brain surgery to "cure" tics, are never fully detailed on the show. The need for long-term expert monitoring, or future surgeries to replace batteries, was not mentioned. Unlike the other patient in the same segment (Adrian, a child with life-threatening scoliosis), it isn't really made clear that Emily's condition is not life threatening, that the risks associated with Deep Brain Stimulation are extreme, or that many young adults do learn to live successfully with tics and without the need for life-threatening surgery. The Health Issues section of the Miracle Workers' website does not discuss the risks, or provide information about Tourette's syndrome as experienced by most patients. The doctor mentions that there have been fewer than a dozen of these surgeries performed (in fact, far fewer than a dozen), and that results so far are very encouraging. In fact, the results of the surgeries done in the Netherlands were less encouraging, and this seems to be a premature statement based on the number of successful outcomes to date, considering that little is know about the long-term outcome for any of these patients. Emily was provided with pharmaceutical assistance for life, but the show did not make clear what medications are needed or why, and who would pick up the costs for the long-term monitoring needed, especially since she lives in California, while her surgery was performed at Tulane University in New Orleans.
Emily was a delightful, spunky, beautiful and courageous woman, who will perhaps prove (over time) to be a pioneer in the treatment of Tourette's. The surgery appears to have worked for her, and I hope her long-term prognosis is good. It appears to have been a "miracle" for her, but the promise of the show for most persons with Tourette's may be misleading. I would have felt much better about the show if the surgery had been done on a mature adult, who has fully come to terms with life with tics and had time to make a life-risking decision. What the show did not say is that the vast majority of Tourette's is mild, occurs in children who most often see tics remit or subside in adulthood, and that extreme tics in adulthood are a very rare minority. For those reasons, dangerous and expensive brain surgery to correct tics is not likely to become a widespread option for most people with tics any time soon. Although Emily was admirable, this show for me was not a "tear jerker" as promised: it was just another example of less than accurate portrayals of life with and treatment options for Tourette syndrome.
Medical Incredible: some comments
The March 13th episode of Discovery Health Channel's Medical Incredible provides a counterexample to the Miracle Workers program. It features 50-year-old Steve Blackman, a patient of the highly-respected Tourette syndrome expert, James F. Leckman, MD, at Yale University. The contrasts between this show and Miracle Workers are numerous.
Steve Blackman truly has a very rare, severe, violent, and life-threatening case of Tourette syndrome. He is not a young adult: he is 50 years old, has tried extreme alternatives (like having some of his muscles removed to lessen his tics), and has shown the capacity to successfully adapt to life with tics (he is an EMS technician). This is truly a man with a severe and violent case of Tourette's, who has tried everything, whose life may be at risk from the violent nature of his tics, who already has nerve damage from the tics, and for whom the risks of surgery appear to be warranted. Steve represents a patient old enough and experienced enough to be making a life-altering or life-threatening decision about treatment of his very severe Tourette's syndrome.
In contrast with the surface glitz and subtly misleading portrayal of Tourette syndrome on Miracle Workers, this show, to me, is a tear jerker. The weariness in Steve's face and body, from a lifetime of truly painful and severe tics, is heartwrenching. The show describes Steve as tormented and living in hell, which is painfully obvious from the video clips. Steve's level of symptom severity should provide context for the glitzier (and likely more widely viewed) Miracle Workers production, which in contrast, appears to be promoting brain surgery for tics somewhat prematurely.
Discovery Health Channel features Dr. Leckman speaking about Tourette syndrome. Accurate information about all aspects of Tourette syndrome is provided, including information about the more typical progression of tics for most patients. There is no misleading or inaccurate medical information.
This program is not for the weak of heart, or frightened parents of children newly-diagnosed with Tourette's. It doesn't provide the sugar-coated, tear-jerker, glitzy, happily-ever-after production of Miracle Workers. What it does provide is an accurate discussion of typical Tourette's syndrome, from a recognized and experienced Tourette syndrome expert, and a look at a truly rare and severe case of Tourette's, for which extreme intervention is warranted. Unfortunately, the show does have a "freak show" quality, because of the other medical issues included in the same segment. For a realistic appraisal of the applicability of deep brain surgery for Tourette's syndrome, I recommend Medical Incredible over the "Holllywood" portrayal of Miracle Workers. According to their website,
(Just a note: this website was
designed for newcomers to Tourette's syndrome, to be read through in page order.
Strengths and advantages associated with Tourette's syndrome
Growing up with Tourette's
Syndrome: Information for Kids
HBO Documentary on Tourette's Syndrome
Syndrome Research Article Summary
Tourette's Syndrome - Now What?
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