Following up from the previous post, the Kiwi ETS Group was also recently approached by another person considering ETS, who asked:
"Why should I take seriously opinions on ETS from random people on the Internet? The surgeon I have approached about ETS has performed the surgery hundreds of times. He is highly qualified and well respected and has put me in touch with a past patient of his, who said ETS changed their life for the better. Why should I listen to the opinions of unqualified people who angrily rant on the Internet about the dangers of ETS? I actually think some of these people are a bit nuts."
I decided to ask a young ETS patient, who is now suffering from numerous severe side effects of ETS, to answer this question. The side effects this patient lives with include CS that soaks through their clothing in winter and summer, anhidrosis, ongoing neuropathic pain, impaired thermoregulation, and heart problems. The name of this patient has not been used to protect their privacy.
*****
"I do realize the importance of your question, especially because I went through the same line of reasoning and justification when I encountered the Internet forum for ETS patients and the ravings of some the members who blame everything in their lives on this elective surgery.
"I thought to myself: why would I want medical advice from someone anonymous, who makes spelling mistakes in almost every word, and who sounds pretty deranged to start with? So I lingered just long enough to see that the Internet contains these communities of conspiracy theorists - in this case, medical conspiracy theorists - and decided I did not want to have anything to to with this kind of negative and clearly delusional worldview. I lived in a different world, where medical professionals base their 'art’ on science and not fiction, where the Hippocratic Oath and sense of duty overpowers any human shortcoming medical professionals might have - like greed. In this world, I also believed that the profession self-regulates and would, therefore, eject someone not worthy of the lofty ideals. In short, I was an ignorant snob who was well conditioned by society. Just where did these beliefs of mine come from? I could go on, but you can read about it somewhere else - for example, here: http://mythofmedicine.blogspot.com/.
"Do your own research, the information is all out there. It is sad that prospective patients have to do their own medical research, but you have to be skeptical - because you have to protect yourself. Unfortunately, the misinformation about ETS is so widespread, and it has been repeated so many times that it has become the ‘truth’.
"I previously thought the best source of information on ETS was the ETS surgeons themselves. So, I focused on reading their websites. In a rational, just world, this would have been all I needed to read. I also read many of the testimonials hand-picked by the surgeons from their patients, and did not realize how easily I got seduced by the sophisticated language of advertising. Soon, my brain was saturated with the carefully crafted sales pitch of the surgeons, and for some reason, the alarm did not kick in.
"My consultation was the same. I guess that’s because I was listening to a respected surgeon in a prestigious private hospital. He repeated the same pitch that I read on the 'net. Impressions count.
"Our belief in the authority counts and skews our perception.
"It is not true that the patient-doctor relationship is a relationship of equals. We always know less - mostly very little - about the subject, and we rely on the guidance and advice of the professional. We are always in awe of the knowledge and the science that allows them to save lives. With their air of authority and our conditioning, the balance of power is pretty uneven.
"But do not believe me, or those unhappy, ranting ETS patients on the Internet. Use your reason, and CLOSELY examine the texts that are published by the ETS surgeons for all to see. If you read enough and if you really pay attention, you will find all the tricks of the trade. All the contradictions and inconsistencies are there if you read enough or even if you read just one website or one 'study' really carefully. Apply your critical thinking and see what you come up with.
"Here are some examples of the lack of credibility and science, and of the pure contradiction, in the claims of ETS surgeons:
(1) ETS surgeons repeat, over and over, that ETS will arrest sweating in a limited, well-defined area, - usually the face or the palms, and that these areas can be easily targeted. They also mention that ETS only affects sweat gland function. If you read enough of these websites, you will find that some throw in a line about how ETS for palmar sweating or blushing will also arrest sweating of the feet - in some cases in 70% of patients. It is an additional selling point, and this is what the patient with the optimistic disposition will hear. However, to the medical professional it should sound a warning because it means that with ETS, the ‘targeting’ of an exact body area DOES NOT WORK, and that ETS - in the majority of cases - will have an overall (systemic) effect on the body, beyond what current science understands. A responsible medical professional already should be alarmed that they are venturing into territory they do not understand.
(2) Take the time to lay out a book of anatomy in front of you, and please spend some time pondering how cutting, burning or clamping the sympathetic chain, part of the information ‘highway’ between the body and the brain, is going to ONLY impact on sweating of the palms - as the ETS industry would want you to believe. It is an anatomical impossibility. Also, you might look up the illustration where it shows to which organs these nerve branches go and ponder what could happen once part of this chain is destroyed, in terms of heart function, lung function or overall complex autonomic reflexes. There have been published reports on patients needing a pacemaker after ETS, and the risk of bradycardia associated with ETS. It is not a coincidence.
(3) If you read enough, you will find surgeons who will describe their T2 surgery or T2 + T3 surgery as safe and effective and having a "nearly 100% cure rate of hyperhidrosis". Then you will find - a few years later - an article from the same surgeon, stating that ETS at T2 causes higher rates of CS. This surgeon is now performing ETS at T4, and with that he claims to have achieved 100% success and says hardly any of his patients get compensatory sweating. What do you think about the fact that this surgeon previously claimed T2/T2 + T3 ETS surgery was "effective" with a "nearly 100% cure rate"? Do you believe his new technique of T4 ETS surgery has a 100% success rate? Does it make you think about the credibility of the surgeon or the procedure? Maybe it should. After all, they are free to write in their articles whatever they please, and many use it as a platform for advertising and advancing their career/prestige.
(4) Have you read, over and over, that the ‘compensatory sweating’ is shifting of the sweating from one - targeted - area to another, so that the body can maintain thermoregulation? This, again, is a fallacy because the only study ever done on this topic showed that patients had a higher total sweat output after ETS than before. Yet, this fact will still not let you see the reality of how the ‘compensatory sweating’ impacts on patients lives. You would need photos for that. But you will not find a single photograph showing post-ETS compensatory sweating on any of the surgeons websites. Why do you think that is? (Please see some photos at the end of this blogpost, showing how severe CS can be.)
(5) You will find the internal (competitive) argument raging over which level(s) should be cut or clamped. The surgery has been done for decades. Perhaps there should have been some objective testing done by now to assess what happens to the patients in the short-term and long-term after ETS. But such an initiative would have to come from the surgeons who offer ETS in the first place. But that’s just it: the independent reviews that have been done all concluded that the ‘studies’ done by the ETS surgeons are prone to bias (self-serving lies or simple fiction to justify the procedure), and that there can be no conclusions made about the safety or effectiveness of ETS. These conclusions are not made by lunatic ETS patients on the Internet - these are reviews done by medical industry insiders (see link below).
"I think the problem is that when we read the surgeons websites, we are conned from the word go, and we do not read these texts as a skeptic, but rather as someone who fully BELIEVES what they are being told, and believes that they are being told the whole truth.
"We are not critical readers, we are consumers lapping up the sales pitch - because of where it’s coming from - and that makes us extremely vulnerable.
"And no, it is not true that the surgeons do not know about the adverse effects, or that these are so extremely rare that they do not bother to mention them, because the literature does not support any of these excuses. Instead, to justify the continued practice of destructive ETS, the surgeons make up a pseudoscience around it, and nobody seems to want to challenge this - at least not in the professional circles. It is not part of their culture. All the unhappy patient can do is to take the surgeon to court, and that is another story - a difficult and expensive story. And partly because of this, there is very little accountability on the side of medical professionals. Ignore this at your own peril."
"Sympathectomy is a technique about which we have limited knowledge, applied to disorders about which we have little understanding." - Robert Boaz, The Journal of Pain, 2000. (http://www.pfizer.no/templates/page____886.aspx (In Norwegian, but you can use Google's translate function.)
"A lack of high quality randomized trial evidence on ETS means that it is difficult to make a judgment on the safety and effectiveness of this technique. There is potentially a number of safety issues associated with this procedure."
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