Friday, August 27, 2010

Why prospective ETS patients so often don't hear the full story, and the ongoing effort to change this

'CSmess' is an American professional and family man who moderates and regularly contributes to the Internet forum ETS and Reversals Discussion. He has had both an ETS and a reversal surgery. The reversal only made his side effects worse.

ETS and Reversals Discussion was set up in the early to mid-2000s by American Carole Edward, who lives with hyperhidrosis, so that ETS patients around the world who have had bad outcomes from the surgery can come together online, tell their stories, learn more about their side effects, support each other, discuss possible treatments for side effects, name their surgeons, discuss their legal options, and more. A key mission of the forum is also to WARN prospective ETS patients about the other side of the ETS story - the one the ETS surgeons don't acknowledge and don't want prospective ETS patients to hear.

The forum has members from the following countries:
Australia, New Zealand, the US, the UK, Canada, Ireland, Spain, Sweden, Norway, Poland, Chile, Peru, Thailand, Taiwan, Malaysia...and probably more countries. Users of the forum don't always reveal their nationality.

In response to a happy ETS patient who expressed the view that the forum overwhelmingly contains the stories and experiences of those who have had devastating results from their ETS surgeries, 'CSmess' wrote the following on ETS and Reversals Discussion.


"There is a huge amount of published research showing that a very substantial percentage of ETS patients experience disabling side effects that dramatically lower their quality of life and diminish their health. Yet, you will not find a single testimonial from any of these thousands of souls published in any surgeon's brochure or on their websites. Furthermore, while many surgeons provide telephone numbers of past patients to prospective patients, they only hand out the numbers of the happy patients. The unhappy stories are swept under the carpet. Prospective patients get to hear only one side of the story.

"The only place where the voices of the many disabled patients can be heard is on forums like this one.

"In other words, lucky/happy ETS patients have a number of formal avenues to "spread the joy", but those who did not have good outcomes have only a self-funded Internet message board. Do a Google search on hyperidrosis or blushing cures and you'll get page after page of lavishly funded websites littered with glowing testimonials. Our puny little forum is but a whisper drowned out by thousands of bull horns that paint a one-sided and dishonest picture of the effects and risks of this surgery.

"Beyond providing a place for the testimonials that the surgeons won't publish, the ETS Reversals and Discussion forum provides links to the mountain of medical research findings that contradict the claims most of the surgeons make regarding the number, frequency and severity of adverse side effects of this surgery.

"Most people considering ETS surgery only hear from patients with happy outcomes. The surgeons make a concerted effort to make sure that remains the norm. And that ain't right. It ain't honest. So, the members of the ETS Reversals and Discussion forum seek to right this wrong, and provide to folks who are considering the surgery the information they won't get from their surgeons."

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