How They Get Away With It
How on earth can surgeons be getting away with ETS?
I believe the answer is a combination of several factors:
Lies - Before and After Surgery
These ETS doctors are knowingly witholding vital information, and, at least in my surgeon's case, blantantly lying. I believe my experience with my surgeon is fairly typical.
Before surgery, he claimed no bad side effects, only warning me about Compensatory Sweating and Horner's Syndrome. Even this much is deceptive because the term "Compensatory Sweating" is misleading. The correct term is Compensatory Hyperhidrosis, because ETS patients typically sweat even more than they did before. How can a doctor sell ETS as a cure for hyperhidrosis when it causes worse hyperhidrosis? Simple, just call it sweating!
My surgeon even claimed that "ETS has no effect on normal sweating", when speaking to my concerns about exercise and heat. He said that ETS only affected nervous sweating. Nothing mentioned about the heart. Nothing about blood pressure, or thermoregulation, or exercise, or the sense of touch.
Nor did he mention that ETS is not approved by the FDA. Nor did he mention that ETS has been banned in Sweeden, where the greatest number of procedures had been done.
The pre-op consultations of every other ETS victim I have spoken with were similarly deceptive.
After surgery, my surgeon strung me along with all sorts of rhetoric. On some of my complaints (poor thermoregulation, rib pain, compensatory sweating), he just kept saying that it would go away. On other complaints (bradycardia, diminished exercise capacity, blunted adrenal response to fear, and blood pressure problems), he said I was imagining things. On still other matters (loss of goosebumps and physical pleasure), he claimed I was the first and only patient ever to have that. And yet on still other effects (overly dry hands, intolenrance of dry textures, malfunctioning arteries) he confirmed prior knowledge, did not apologize and basically left me to live with it. Having now spoken to many of his other patients, I know that many others have complained to him about all of these things, both before and after my surgery. And all of these things are in the medical literature.
Still, I did not want to believe that I was damaged for life, I wanted to believe that I would get better and everything would be fine and I would be My surgeon's #1 fan. It is a very difficult shift of mind to confront the sad reality of being permanently disabled. He almost was able to string me along past the statute of limitations, I filed my lawsuit against him 364 days after surgery.
Many ETS victims suffer from chronic fatigue and depression. Prosecuting a malpractice and fraud case against the surgeon requires months of hard work, spread out over a year or more. It requires focusing on the details of one's own tragic misfortune, which is angering and saddening. Many victims who want to sue, or who even begin the process, get to a certain point and just physically give up.
Statute of Limitations
There is a one-year statute of limititions for medical malpractice in most states. It can easily take a year for victims to realize that their injuries are permanent. Likely the doctor is claiming that the side-effects will go away, or that they are imaginary. When victims do finally accept the grim reality and contact an attorney, they are told it is too late.
Prosecuting a case against a doctor is expensive. Even though a good lawyer can be retained on a full or partial contingency basis, suing a doctor requires the testimony of expert medical witnesses. Many witness, from various medical specialties, may be required. Fees for such witnesses can total tens of thousands of dollars, or more. Even victims who see through the lies, beat the statute of limitations, fight through their chronic fatigue and other disabling symptoms, nevertheless find themselves finacially unable to move forward, regardless of the merits of their cases.
Unscientific "Patient Satisfaction Reports"
Most of the success rate claims made by the ETS surgeons are based on wholly unscientific "Patient Satisfaction Reports". These are a simple questionaire taken within a few months after the surgery, when the patient is still far from sorting it all out. Usually the questionaire deals with the elimination of sweating, and by that standard, ETS surgery is arguably successful. Even though ETS increases the total amount of sweating, it does cause a complete lack of sweating from the nipple line up.
Meanwhile, some disturbing side effects are impossible to photograph. How does one document the dry, burning sensation in the palms of the hands that many ETS victims are stuck with for life? If a full cardio workup is not done before surgery (which it isn't), then how does one prove the bradycardia? Nerve damage is invisble. Far reaching and potentially devastating, but invisible.
Considering ETS is not even approved by the FDA yet, the lack of long term follow-up studies in the ETS industry is astonishing. If the surgeons were truly interested in good science, they could easily order a whole battery of tests before and after surgery. Why don't most surgeons perform such studies on their own patients? The answer must be that they have already seen the extensive documentation, and they know that more studies would confirm what is already known, and that they would be creating the very evidence that would bring the ETS industry crashing down.
I registered a grievance with the Medical Board of California. It took 11 months to get any reply, and it is clear from their letter that they investigated nothing, and were intent on ignoring the entire matter. They gave not the slightest hint that they even read my complaint. It is evident to me that, in California at least, the Medical Board exists to shield doctors, not protect patients. Read my grievance, their answer and my reply and see if you don't agree.
Another way that these doctors are succeeding at delaying the demise of this horrible surgery is to strictly isolate all their past patients from each other. Patient privacy laws prevent doctors from releasing personal information to others without permission. But there’s no reason the doctor couldn’t contact past patients himself, to see if they would be interested in corresponding with others. Any compassionate human with nothing to hide would offer to do this.
Fortunately, there is the internet. ETS victims from all over have formed communities on the web, and have begun the process of connecting with one another. But again, this is limited by the reluctance of many victims to participate. Many just find the online ETS forums too depressing and have concluded that focusing on other matters is healthier. It is hard to blame them.
Whether due to laziness or doctor-worship, the news media have thus far written mostly glowing reviews of ETS. ETS surgeons distribute press releases which are parroted without scrutiny. With so many other truly amazing recent surgical innovations out there, such as laser eye surgery, I suppose it's easy to assume ETS is just another safe medical marvel. I invite journalists to peruse this site.
Eventually, an enterprising investigative reporter will dig into this and realize that ETS has all the elements of a very hard-hitting, audience grabbing story. ETS is a crime against humanity and I defy anyone to investigate the facts and conclude otherwise.