http://archive.is/www.ets-sideeffects.com/
Showing posts with label perspectives of people living with adverse side effects of ETS. Show all posts
Showing posts with label perspectives of people living with adverse side effects of ETS. Show all posts
Sunday, July 22, 2012
Archive for Australian website on risks of ETS
The archive for the former Australian-based PASS website (Patients Against Sympathectomy Surgeries) can be found here.
Monday, April 2, 2012
Article about ETS surgery published in Sydney Morning Herald's 'Good Weekend' magazine
The article, published on March 10 2012, was written by journalist John Van Tiggelen and looks at the social and professional impacts of facial blushing, why people would seek surgery for this misunderstood condition, and some of the controversy around the surgery offered for facial blushing (and hyperhidrosis) - ETS.
Here is a link to the full text and scans of the article that were shared by an Australian ETS patient on the US-based support forum for those living with adverse side effects of ETS:
http://etsandreversals.yuku.com/topic/5083/Article-about-the-surgery-in-the-mainstream-media-RED-ALERT
The article was not published online, only in print.
The Australian ETS surgeon interviewed for the article is Dr Roger Bell, a Melbourne vascular surgeon who specialises in ETS. In the last two years, since he advertised on the radio, he has done 100-150 sympathectomies a year. He claims he has a patient dissatisfaction rate of around 10%, though the journalist points out that he does not follow up his patients beyond one week post-surgery.
From the article:
Bell fell into his specialty almost by accident. “For years I knew there was a big need out there and that if someone just marketed this, you’d make a killing. People with facial blushing or sweaty hands suffer in silence. They hide it and their GPs don’t generally know anything about it. But I didn’t have an entrepreneurial streak in me. Then a couple of years ago I became friendly with a plastic surgeon and he said, ‘Why don’t you set up a website?’ So I did. One of the first guys who came to see me was from [Melbourne’s] Fox FM and he said, ‘Why don’t you put ads on the radio?’ I did, and things just took off. Until two years ago I was doing about five or 10 sympathectomies a year. Now I’m doing well over 100 a year, maybe 150.”
Here is a link to the full text and scans of the article that were shared by an Australian ETS patient on the US-based support forum for those living with adverse side effects of ETS:
http://etsandreversals.yuku.com/topic/5083/Article-about-the-surgery-in-the-mainstream-media-RED-ALERT
The article was not published online, only in print.
The Australian ETS surgeon interviewed for the article is Dr Roger Bell, a Melbourne vascular surgeon who specialises in ETS. In the last two years, since he advertised on the radio, he has done 100-150 sympathectomies a year. He claims he has a patient dissatisfaction rate of around 10%, though the journalist points out that he does not follow up his patients beyond one week post-surgery.
From the article:
Bell fell into his specialty almost by accident. “For years I knew there was a big need out there and that if someone just marketed this, you’d make a killing. People with facial blushing or sweaty hands suffer in silence. They hide it and their GPs don’t generally know anything about it. But I didn’t have an entrepreneurial streak in me. Then a couple of years ago I became friendly with a plastic surgeon and he said, ‘Why don’t you set up a website?’ So I did. One of the first guys who came to see me was from [Melbourne’s] Fox FM and he said, ‘Why don’t you put ads on the radio?’ I did, and things just took off. Until two years ago I was doing about five or 10 sympathectomies a year. Now I’m doing well over 100 a year, maybe 150.”
Sunday, September 4, 2011
Photos showing just how severe and disabling compensatory sweating can be post-ETS
An anonymous Italian ETS patient created this web page to document the severity of their compensatory sweating (CS) post ETS.
http://www.ago972.altervista.org/index.html
These are not the kind of photos ETS surgeons show prospective patients - but they should. Regardless what the chances of developing this level of CS are, patients should be informed that the side effects of ETS can be much, much worse than the original condition.
Thank you to the patient who created this web page, for sharing your story.
http://www.ago972.altervista.org/index.html
These are not the kind of photos ETS surgeons show prospective patients - but they should. Regardless what the chances of developing this level of CS are, patients should be informed that the side effects of ETS can be much, much worse than the original condition.
Thank you to the patient who created this web page, for sharing your story.
Monday, June 6, 2011
Why should I listen to opinions on ETS from random people on the Internet who have no medical qualifications?
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."
"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."
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."
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."
Monday, December 28, 2009
Welcome
Hello,
I am a New Zealander. I had ETS in 2001 for dripping, disabling palmar hyperhidrosis that had affected me since birth. Since then, I have had normally dry palms and I have never suffered any major or ongoing adverse side effects of ETS. I did experience some mild gustatory sweating for approximately two years after the surgery, but it faded away. I have never experienced CS (more below), anhidrosis, or any heart or lung function problems, or fatigue problems. All up, I am happy with the results of my surgery.
However, in recent years, I have learned that a significant number of ETS patients suffer adverse, chronic side effects after ETS that rob them of their health and quality of life – the results of their elective ETS surgery for Hyperhidrosis, Facial Blushing or Raynauds syndrome do not match what their surgeons promised. Many ETS patients deal with disabling side effects from this surgery – side effects that their surgeons never mentioned or downplayed the likelihood/severity of.
It is not for me to advise anyone on whether or not they should have ETS. However, I am disturbed that my own surgeon did not warn me of numerous potential adverse side effects associated with ETS that I now know have been extensively documented in the medical literature for decades. And the side effcts he did warn me about, such as CS and reduced exercise capacity, were described as being minor and having only a 1% risk of occurring - yet the medical literature states otherwise.
In addition, from 2009 to the present, I have both corresponded and met with a significant number of ETS patients from the US, Canada, the UK, Australia, New Zealand, and Peru, aged from their early 20s to mid-40s, who report having experienced some or even all of the following side effects and health problems after ETS.
-Uncontrollable sweating on the body from the chest down to the legs that, for hyperhidrosis patients, can be far more distressing than the original, localised excessive sweating condition.
Doctors call this side effect 'compensatory sweating' (also known as CS) or 'compensatory hyperhidrosis', and it can be so severe that the ETS patient soaks through their clothing daily, requiring several changes of clothes and resulting in social and professional stress and disability.
-Inability to sweat on the face/head (anhidrosis)
-Painfully dry eyes/scalp
-Hair loss/thinning and/or loss of eyebrows
-Lowered resting and maximal heart rate and reduced exercise capacity
-Bradycardia (very low heart rate, may require a pacemaker)
-Breathlessness, even when doing low-intensity activities such as walking, child-minding or hoursehold chores.
-Ongoing fatigue
-Cold hands (can be painfully cold)
-Sweating on the face and head only when eating or eating certain foods. The sweating can be mild or severe, for example, ranging from a dampness to sweat that is continuously dripping off your head/face.
In severe cases, it can greatly limit the sufferer's desire to dine out, eat meals with family, friends, and colleagues, attend Christmas dinners, attend business lunches, etc. Doctors call this side effect 'gustatory sweating'.
-Impaired thermoregulation – the body can no longer adjust to changes in temperature, especially hot weather (loss of homeostasis). This can severely limit the sufferer's ability to go outside in summer/warm weather, play sports, and enjoy many outdoor social activities and pursuits, resulting in greatly reduced quality of life and family life.
-Extremely dry hands
-Erectile Dysfunction
-Difficulty reaching orgasm
-Loss of libido
-Blood pressure problems
-Stress intolerance
-Depression
-Mental fogginess
-Loss of emotion
-Sensitivity to sounds and light
-Ongoing pain, particularly in the chest, back, limbs, or under the arms. Pain can be severe/disabling.
-Unexplained prickling, burning, numbness or tingling sensations in the body/limbs
Brief descriptions of medical conditions ETS surgery is commonly offered for:
Hyperhidrosis – Excessive sweating of the hands, feet, underarms, face, head or body. The sweating can be so severe that sweat forms on and/or drips from the affected body part(s) almost continuously during waking hours. Hyperhidrosis is considered to be socially and professionally disabling by those affected.
Facial Blushing – This condition is also known as 'erythrophobia', or 'fear of blushing'. It is a sudden and severe blushing of the face (the neck and upper chest can also be affected), sometimes to the point that it is burning and painful. Facial blushers typically find it impossible to look others in the eye without blushing deeply. Those affected consider the condition to be socially and professionally disabling.
Raynauds – Discoloured, painful and excessively cold hands/feet/limbs. Raynauds is a vasospastic disorder, the cause of the phenomenon is believed to be the result of vasospasms that decrease blood supply to the respective regions. Sufferers can develop the first signs of frostbite in the affected body part(s).
I am a New Zealander. I had ETS in 2001 for dripping, disabling palmar hyperhidrosis that had affected me since birth. Since then, I have had normally dry palms and I have never suffered any major or ongoing adverse side effects of ETS. I did experience some mild gustatory sweating for approximately two years after the surgery, but it faded away. I have never experienced CS (more below), anhidrosis, or any heart or lung function problems, or fatigue problems. All up, I am happy with the results of my surgery.
However, in recent years, I have learned that a significant number of ETS patients suffer adverse, chronic side effects after ETS that rob them of their health and quality of life – the results of their elective ETS surgery for Hyperhidrosis, Facial Blushing or Raynauds syndrome do not match what their surgeons promised. Many ETS patients deal with disabling side effects from this surgery – side effects that their surgeons never mentioned or downplayed the likelihood/severity of.
It is not for me to advise anyone on whether or not they should have ETS. However, I am disturbed that my own surgeon did not warn me of numerous potential adverse side effects associated with ETS that I now know have been extensively documented in the medical literature for decades. And the side effcts he did warn me about, such as CS and reduced exercise capacity, were described as being minor and having only a 1% risk of occurring - yet the medical literature states otherwise.
In addition, from 2009 to the present, I have both corresponded and met with a significant number of ETS patients from the US, Canada, the UK, Australia, New Zealand, and Peru, aged from their early 20s to mid-40s, who report having experienced some or even all of the following side effects and health problems after ETS.
-Uncontrollable sweating on the body from the chest down to the legs that, for hyperhidrosis patients, can be far more distressing than the original, localised excessive sweating condition.
Doctors call this side effect 'compensatory sweating' (also known as CS) or 'compensatory hyperhidrosis', and it can be so severe that the ETS patient soaks through their clothing daily, requiring several changes of clothes and resulting in social and professional stress and disability.
-Inability to sweat on the face/head (anhidrosis)
-Painfully dry eyes/scalp
-Hair loss/thinning and/or loss of eyebrows
-Lowered resting and maximal heart rate and reduced exercise capacity
-Bradycardia (very low heart rate, may require a pacemaker)
-Breathlessness, even when doing low-intensity activities such as walking, child-minding or hoursehold chores.
-Ongoing fatigue
-Cold hands (can be painfully cold)
-Sweating on the face and head only when eating or eating certain foods. The sweating can be mild or severe, for example, ranging from a dampness to sweat that is continuously dripping off your head/face.
In severe cases, it can greatly limit the sufferer's desire to dine out, eat meals with family, friends, and colleagues, attend Christmas dinners, attend business lunches, etc. Doctors call this side effect 'gustatory sweating'.
-Impaired thermoregulation – the body can no longer adjust to changes in temperature, especially hot weather (loss of homeostasis). This can severely limit the sufferer's ability to go outside in summer/warm weather, play sports, and enjoy many outdoor social activities and pursuits, resulting in greatly reduced quality of life and family life.
-Extremely dry hands
-Erectile Dysfunction
-Difficulty reaching orgasm
-Loss of libido
-Blood pressure problems
-Stress intolerance
-Depression
-Mental fogginess
-Loss of emotion
-Sensitivity to sounds and light
-Ongoing pain, particularly in the chest, back, limbs, or under the arms. Pain can be severe/disabling.
-Unexplained prickling, burning, numbness or tingling sensations in the body/limbs
Brief descriptions of medical conditions ETS surgery is commonly offered for:
Hyperhidrosis – Excessive sweating of the hands, feet, underarms, face, head or body. The sweating can be so severe that sweat forms on and/or drips from the affected body part(s) almost continuously during waking hours. Hyperhidrosis is considered to be socially and professionally disabling by those affected.
Facial Blushing – This condition is also known as 'erythrophobia', or 'fear of blushing'. It is a sudden and severe blushing of the face (the neck and upper chest can also be affected), sometimes to the point that it is burning and painful. Facial blushers typically find it impossible to look others in the eye without blushing deeply. Those affected consider the condition to be socially and professionally disabling.
Raynauds – Discoloured, painful and excessively cold hands/feet/limbs. Raynauds is a vasospastic disorder, the cause of the phenomenon is believed to be the result of vasospasms that decrease blood supply to the respective regions. Sufferers can develop the first signs of frostbite in the affected body part(s).
Subscribe to:
Posts (Atom)