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.
Sunday, September 4, 2011
Update on second complaint made against Auckland ETS surgeon Dr Murray MacCormick
As discussed in this post from April this year, the second complaint in a 12-month period against Dr Murray MacCormick was made earlier this year by a patient who had ETS for facial blushing.
The patient's complaint focused on the lack of information they were given on the risks of ETS during their sole ten-minute consultation with Dr MacCormick, and the impact the side effects they developed post-ETS (such as severe CS, inability to sweat on the head and face, insomnia, and reduced exercise capacity) have on their daily life and quality of life.
During the Health and Disability Commissioner's (HDC) short investigation into the patient's complaint, Dr MacCormick refuted, via a letter, the patient's assertion that their consultation with Dr MacCormick lasted only ten minutes and that the only potential side effect of ETS mentioned by Dr MacCormick during this consultation was Horner's Syndrome. Dr MacCormick also stated in his letter to the HDC that of all the health issues the patient has experienced since having ETS, "only a few would be a likely result of sympathectomy."
Dr MacCormick also wrote in his letter to the HDC:
"As is clear from the files, I readily accept that this intervention was poorly advised, and patient selection on my part was inappropriate, something which I recognised in retrospect."
It is not clear what exactly in the patient's files Dr MacCormick might be referring to but he does appear to be freely admitting that he should never have performed ETS on the patient.
After hearing Dr MacCormick's version of events in relation to this patient's ETS consultation, surgery, and resulting side effects, the HDC decided to take no further action on the complaint.
From the HDC's final decision letter to the patient:
"It is clear you had an unfortuante outcome to ETS surgery and Dr MacCormick "accepts that this intervention was poorly advised".
"While I do not doubt that this outcome has caused you a great deal of anxiety, I must take into account the fact that your surgery took place over a decade ago. Given he amount of time that has elapsed I do not feel it would be practicable for me examine your complaint further. Further, ETS surgery techniques have changed considerably over the past decade and I do not feel it would be fair for me to assess the care Dr MacCormick provided to you based on current ETS knowledge."
The HDC's assertion in this paragraph would appear to expose bias or ignorance - the techniques used for ETS have not changed considerably or even moderately since 2001. There was a significant change in ETS surgery technique in the 1980s, when it went from being an open procedure involving a long hospital stay to an endoscopic procedure that can be done as day surgery, but there have not been any major changes in how the surgery has been performed since then. (Though there has been much internal debate among ETS surgeons on which levels of the thoracic chain should be operated on, such as T2 + T3, T2 only, or T4 only, but this debate does not involve changes in surgical technique.)
If any NZ ETS patients wish to make a complaint against Dr Murray MacCormick, you are welcome to reference this most recent complaint in support of your own, the HDC reference code for which is:
C11HDC00233
In addition, you are also welcome to reference the earlier complaint, made in 2010, in support of your own, the HDC reference code for which is:
C10HDC00679
Readers can refer to all posts on this blog labelled 'Dr Murray MacCormick' to read the background on the 2010 complaint made against him by a patient who had ETS for wrongly diagnosed hyperhidrosis.
The patient's complaint focused on the lack of information they were given on the risks of ETS during their sole ten-minute consultation with Dr MacCormick, and the impact the side effects they developed post-ETS (such as severe CS, inability to sweat on the head and face, insomnia, and reduced exercise capacity) have on their daily life and quality of life.
During the Health and Disability Commissioner's (HDC) short investigation into the patient's complaint, Dr MacCormick refuted, via a letter, the patient's assertion that their consultation with Dr MacCormick lasted only ten minutes and that the only potential side effect of ETS mentioned by Dr MacCormick during this consultation was Horner's Syndrome. Dr MacCormick also stated in his letter to the HDC that of all the health issues the patient has experienced since having ETS, "only a few would be a likely result of sympathectomy."
Dr MacCormick also wrote in his letter to the HDC:
"As is clear from the files, I readily accept that this intervention was poorly advised, and patient selection on my part was inappropriate, something which I recognised in retrospect."
It is not clear what exactly in the patient's files Dr MacCormick might be referring to but he does appear to be freely admitting that he should never have performed ETS on the patient.
After hearing Dr MacCormick's version of events in relation to this patient's ETS consultation, surgery, and resulting side effects, the HDC decided to take no further action on the complaint.
From the HDC's final decision letter to the patient:
"It is clear you had an unfortuante outcome to ETS surgery and Dr MacCormick "accepts that this intervention was poorly advised".
"While I do not doubt that this outcome has caused you a great deal of anxiety, I must take into account the fact that your surgery took place over a decade ago. Given he amount of time that has elapsed I do not feel it would be practicable for me examine your complaint further. Further, ETS surgery techniques have changed considerably over the past decade and I do not feel it would be fair for me to assess the care Dr MacCormick provided to you based on current ETS knowledge."
The HDC's assertion in this paragraph would appear to expose bias or ignorance - the techniques used for ETS have not changed considerably or even moderately since 2001. There was a significant change in ETS surgery technique in the 1980s, when it went from being an open procedure involving a long hospital stay to an endoscopic procedure that can be done as day surgery, but there have not been any major changes in how the surgery has been performed since then. (Though there has been much internal debate among ETS surgeons on which levels of the thoracic chain should be operated on, such as T2 + T3, T2 only, or T4 only, but this debate does not involve changes in surgical technique.)
If any NZ ETS patients wish to make a complaint against Dr Murray MacCormick, you are welcome to reference this most recent complaint in support of your own, the HDC reference code for which is:
C11HDC00233
In addition, you are also welcome to reference the earlier complaint, made in 2010, in support of your own, the HDC reference code for which is:
C10HDC00679
Readers can refer to all posts on this blog labelled 'Dr Murray MacCormick' to read the background on the 2010 complaint made against him by a patient who had ETS for wrongly diagnosed hyperhidrosis.
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."
Wednesday, May 25, 2011
"I had a couple of consultations with two different ETS surgeon and they said that that the patients who have T3 and T4 cut (instead of T2 or T2 and T3), have less side effects and less compensatory sweating. Is this true?"
I was recently asked the above question by someone who is considering having ETS. Here is a copy of the reply I sent them.
*****
*Please note, I am not a medical professional but I feel that I have read and researched enough about ETS, its impacts on those who have had the surgery, and medical research in general, to state the following.
For such a statement to be scientifically correct - that patients cut at T3 and T4 have less ETS side effects and compensatory sweating - it would need to be based on numerous published studies with the following features.
-the studies would need to be independent/not have a conflict of interest (i.e., the studies could not have been done by ETS surgeons themselves)
-the studies would need to have been long-term follow-up studies (i.e., ideally done ten years after the subjects had had ETS)
-the studies would need to have used robust methodology (e.g., double-blind methodology, where the researchers do not know who the control group is in order to, for example, avoid influencing the study's subjects)
-the studies would need to have been done on thousands of ETS patients operated on at different levels
-the ETS patients would need to have been questioned/studied in depth in relation to the many potential adverse side effects of ETS, such as effects on heart rate and function, lung function, sexual function, etc. - not just the side effects of compensatory sweating (CS), gustatory sweating (GS), and Horners syndrome
-the ETS patients would need to have been questioned/studied in depth in relation to how CS affects them in their daily lives and the factors that apply here (such as the climate where patients live, their professions, whether or not they are active people, etc).
No such studies have ever been done. 99% of published studies on ETS that I have ever looked at (and I have read many):
-are done by the ETS surgeons themselves, so there is bias/a conflict of interest
-invariably involve only small study samples (i.e., around 200 patients or less)
-do not use standard methodologies that are considered the benchmarks of robust research
-are typically done soon after ETS (usually only a few months or a year after, when many side effects may still be yet to manifest)
-typically do not discuss or even mention any side effects bar CS, GS, and Horners
-no study on ETS to date, as far as I am aware, has developed and used a method of actually measuring the amount of CS that can occur after ETS - so conclusions on this are subjective.
In addition, even when studies on ETS do mention negative outcomes, the authors (ETS surgeons) invariably write a positive conclusion to their study along the lines of "20% of patients were happy with the results of their ETS, and a further 25% of patients were somewhat happy, which means that ETS is a very safe and effective procedure." Um, what about the other 55% of patients......?????
Some findings from studies that should be noted, in my view, are:
-An Israeli study (Steiner, Kleiner et al, 2007) found 41% of ETS patients felt their quality of life decreased as a result of CS;
-A French study (Gossot et al, 2001) found 8% of ETS patients (or nearly 2 in every 20 patients) felt "disabled" by their CS, with a further 25% saying they felt "disturbed" by their CS;
-And a long-term follow-up study from Germany (Walles et al, 2009) found that 10-14 years after having had ETS, only 40% of patients would have the surgery again. That means 60% either said they would not have the surgery again or they were unsure about whether they would have the surgery again, if it were possible to turn back the clock.
These are possibilities that ETS surgeons should warn patients about. But they do not, because if they did, it seems likely that only a very, very few people would still want to have the surgery. I also think ETS surgeons bank on (literally) the fact that many hyperhidrosis and facial blushing patients are desperate for a solution.
Yes, the results of my ETS have been good, and I have no regrets. But I remain deeply disturbed at how dishonest my surgeon was when informing me (or rather, not informing me) about the risks of this surgery, and I remain deeply disturbed that many who have had ETS - many young people like myself - have been left with devastating, adverse side effects from this surgery that are far worse than their original condition.
I cannot tell you what decision to make regarding having ETS. I can only say that there are two sides to the ETS story, and that the ETS surgeons only ever seem to tell prospective patients one side of that story. I am sure if you spend some time reading online, you will come across ETS patients who were cut/burnt at T3 and T4 who are happy with the results of their ETS, just as you will come across ETS patients who were cut/burnt at T3 and T4 who are NOT happy with the results of their ETS. Just as I am happy with the results of my T2 surgery, yet others have been left with dreadful side effects from being operated on at T2.
ETS is very unpredictable and no one knows why all patients get such different results from it.
Australian and Finnish medical authorities have reviewed the "evidence" (e.g., the studies done on ETS) on the safety and effectiveness of ETS in the past decade (in 2004 and 2009 respectively, I believe). Both authorities concluded that the surgery is associated with a high risk of side effects and there is little evidence for its effectiveness.
The Australian 2009 review concluded:
"A lack of high-quality randomised trial evidence on ETS (this means there is a lack of studies using scientifically robust methodology) means that it is difficult to make a judgement on the safety and effectiveness of this technique. There is potentially a number of safety issues associated with this procedure. The Australian Safety and Efficacy Register of New Interventional Procedures (surgical) (ASERNIP-s) concludes that a full systematic review including all available comparative and case series information, together with clinical input, should be undertaken to provide an up-to-date and comprehensive assessment of the safety and effectiveness of ETS."
Did you read the snippets on the Kiwi ETS Group blog from the interview conducted by me with an ETS surgeon here in New Zealand? He basically admitted that no one - including the ETS surgeons - knows how ETS works. Why would you cut an otherwise healthy person open and destroy parts of their body if you didn't fully understand what you were doing?
I have a few questions for you....
Have you sought a neurologist's opinion on ETS?
Have you spoken to a qualified natural doctor (ND) about your condition (I assume it is hyperhidrosis?) and asked if they can recommend any natural treatments or refer you to an ND who might know more about treating hyperhidrosis?
Have you tried making any changes to your diet and lifestyle to see if this has any affect on your hyperhidrosis?
Do you eat fish? There is one theory that excessive sweating can be a symptom of mercury poisoning, and most fish has mercury in it these days.
I hope this gives you some more information - and facts - to think about.
I know that hyperhidrosis can be hell - mine was a severe case and I would go so far as to say it was disabling, and I had tried and failed other treatments before I sought ETS (though it should be mentioned that I did not try all other non-surgical treatments). But there is no doubt that the side effects can actually be worse than the original condition, so I would advise you to really take your time with this decision.
*****
*Please note, I am not a medical professional but I feel that I have read and researched enough about ETS, its impacts on those who have had the surgery, and medical research in general, to state the following.
For such a statement to be scientifically correct - that patients cut at T3 and T4 have less ETS side effects and compensatory sweating - it would need to be based on numerous published studies with the following features.
-the studies would need to be independent/not have a conflict of interest (i.e., the studies could not have been done by ETS surgeons themselves)
-the studies would need to have been long-term follow-up studies (i.e., ideally done ten years after the subjects had had ETS)
-the studies would need to have used robust methodology (e.g., double-blind methodology, where the researchers do not know who the control group is in order to, for example, avoid influencing the study's subjects)
-the studies would need to have been done on thousands of ETS patients operated on at different levels
-the ETS patients would need to have been questioned/studied in depth in relation to the many potential adverse side effects of ETS, such as effects on heart rate and function, lung function, sexual function, etc. - not just the side effects of compensatory sweating (CS), gustatory sweating (GS), and Horners syndrome
-the ETS patients would need to have been questioned/studied in depth in relation to how CS affects them in their daily lives and the factors that apply here (such as the climate where patients live, their professions, whether or not they are active people, etc).
No such studies have ever been done. 99% of published studies on ETS that I have ever looked at (and I have read many):
-are done by the ETS surgeons themselves, so there is bias/a conflict of interest
-invariably involve only small study samples (i.e., around 200 patients or less)
-do not use standard methodologies that are considered the benchmarks of robust research
-are typically done soon after ETS (usually only a few months or a year after, when many side effects may still be yet to manifest)
-typically do not discuss or even mention any side effects bar CS, GS, and Horners
-no study on ETS to date, as far as I am aware, has developed and used a method of actually measuring the amount of CS that can occur after ETS - so conclusions on this are subjective.
In addition, even when studies on ETS do mention negative outcomes, the authors (ETS surgeons) invariably write a positive conclusion to their study along the lines of "20% of patients were happy with the results of their ETS, and a further 25% of patients were somewhat happy, which means that ETS is a very safe and effective procedure." Um, what about the other 55% of patients......?????
Some findings from studies that should be noted, in my view, are:
-An Israeli study (Steiner, Kleiner et al, 2007) found 41% of ETS patients felt their quality of life decreased as a result of CS;
-A French study (Gossot et al, 2001) found 8% of ETS patients (or nearly 2 in every 20 patients) felt "disabled" by their CS, with a further 25% saying they felt "disturbed" by their CS;
-And a long-term follow-up study from Germany (Walles et al, 2009) found that 10-14 years after having had ETS, only 40% of patients would have the surgery again. That means 60% either said they would not have the surgery again or they were unsure about whether they would have the surgery again, if it were possible to turn back the clock.
These are possibilities that ETS surgeons should warn patients about. But they do not, because if they did, it seems likely that only a very, very few people would still want to have the surgery. I also think ETS surgeons bank on (literally) the fact that many hyperhidrosis and facial blushing patients are desperate for a solution.
Yes, the results of my ETS have been good, and I have no regrets. But I remain deeply disturbed at how dishonest my surgeon was when informing me (or rather, not informing me) about the risks of this surgery, and I remain deeply disturbed that many who have had ETS - many young people like myself - have been left with devastating, adverse side effects from this surgery that are far worse than their original condition.
I cannot tell you what decision to make regarding having ETS. I can only say that there are two sides to the ETS story, and that the ETS surgeons only ever seem to tell prospective patients one side of that story. I am sure if you spend some time reading online, you will come across ETS patients who were cut/burnt at T3 and T4 who are happy with the results of their ETS, just as you will come across ETS patients who were cut/burnt at T3 and T4 who are NOT happy with the results of their ETS. Just as I am happy with the results of my T2 surgery, yet others have been left with dreadful side effects from being operated on at T2.
ETS is very unpredictable and no one knows why all patients get such different results from it.
Australian and Finnish medical authorities have reviewed the "evidence" (e.g., the studies done on ETS) on the safety and effectiveness of ETS in the past decade (in 2004 and 2009 respectively, I believe). Both authorities concluded that the surgery is associated with a high risk of side effects and there is little evidence for its effectiveness.
The Australian 2009 review concluded:
"A lack of high-quality randomised trial evidence on ETS (this means there is a lack of studies using scientifically robust methodology) means that it is difficult to make a judgement on the safety and effectiveness of this technique. There is potentially a number of safety issues associated with this procedure. The Australian Safety and Efficacy Register of New Interventional Procedures (surgical) (ASERNIP-s) concludes that a full systematic review including all available comparative and case series information, together with clinical input, should be undertaken to provide an up-to-date and comprehensive assessment of the safety and effectiveness of ETS."
Did you read the snippets on the Kiwi ETS Group blog from the interview conducted by me with an ETS surgeon here in New Zealand? He basically admitted that no one - including the ETS surgeons - knows how ETS works. Why would you cut an otherwise healthy person open and destroy parts of their body if you didn't fully understand what you were doing?
I have a few questions for you....
Have you sought a neurologist's opinion on ETS?
Have you spoken to a qualified natural doctor (ND) about your condition (I assume it is hyperhidrosis?) and asked if they can recommend any natural treatments or refer you to an ND who might know more about treating hyperhidrosis?
Have you tried making any changes to your diet and lifestyle to see if this has any affect on your hyperhidrosis?
Do you eat fish? There is one theory that excessive sweating can be a symptom of mercury poisoning, and most fish has mercury in it these days.
I hope this gives you some more information - and facts - to think about.
I know that hyperhidrosis can be hell - mine was a severe case and I would go so far as to say it was disabling, and I had tried and failed other treatments before I sought ETS (though it should be mentioned that I did not try all other non-surgical treatments). But there is no doubt that the side effects can actually be worse than the original condition, so I would advise you to really take your time with this decision.
Monday, April 18, 2011
A NEW complaint against Auckland ETS surgeon Murray MacCormick
The Kiwi ETS Group recently learned that a NEW complaint has been made against Auckland ETS surgeon Murray MacCormick, by a patient who has been living with numerous distressing health problems since Dr MacCormick performed ETS on them for facial blushing.
The HDC reference code for this latest complaint is:
C11HDC00233
And the HDC for the complaint that was made about Dr MacCormick last year is: C10HDC00679
Anyone who has had a bad outcome after having ETS surgery with Dr MacCormick, and who is considering making a formal complaint, is welcome to, and encouraged to, reference these two other complaints in support of their own complaint.
Two complaints against Dr MacCormick by two New Zealand ETS patients, in less than a year, is a positive step. Little by little, we can all play our part to raise awareness of the risks of ETS among prospective patients, and to protest the failings in the medical system.
The HDC reference code for this latest complaint is:
C11HDC00233
And the HDC for the complaint that was made about Dr MacCormick last year is: C10HDC00679
Anyone who has had a bad outcome after having ETS surgery with Dr MacCormick, and who is considering making a formal complaint, is welcome to, and encouraged to, reference these two other complaints in support of their own complaint.
Two complaints against Dr MacCormick by two New Zealand ETS patients, in less than a year, is a positive step. Little by little, we can all play our part to raise awareness of the risks of ETS among prospective patients, and to protest the failings in the medical system.
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