Serotonin syndrome can be the cause of excessive sweating - and this can be remedied WITHOUT ETS surgery

New Zealand's weekly publication The Listener recently published an article on the use of antidepressant drugs in New Zealand. These drugs are also known as selective serotonin re-uptake inhibitors (SSRIs), Tricyclic antidepressants (TCAs), and Monoamine Oxidase Inhibitors (MAOIs).

The SSRI medicines available in New Zealand are:
Citalopram (brand names: Cipramil, Celapram) · Escitalopram (brand name: Lexapro, Cipralex) · Fluoxetine (brand names: Fluox, Prozac, Apo-fluoxetine, Lovan, Plinzene, Flexetor, Fluohexal) · Fluvoxamine (brand name: Luvox) - not marketed · Paroxetine (brand name: Aropax) · Sertraline (brand name: Zoloft) · Venlafaxine (brand name: Efexor)

Tricyclic antidepressants available in New Zealand are:
Amitriptyline (brand name: Amitrip) . Clomipramine (brand name: Anafranil, Apo-clomipramine, Clopress) . Desipramine (brand name: Pertofran) . Doxepin (brand name: Anten) . Dothiepin (brand name: Dopress) . Imipramine (brand name: Tofranil) . Maprotiline (brand name: Ludiomil) . Mianserin (brand name: Tolvon) . Noritriptyline (brand name: Norpress) . Trimipramine (brand name: Tripress, Surmontil)

Other antidepressants available in New Zealand are:
Mirtazapine (brand name: Remeron) . Moclobemide (brand name: Aurorix, Apo-moclobemide) . Reboxetine (brand name: Edronax) . Tranylcypromine (brand name: Parnate)

Please note, there may be other antidepressant drugs available in NZ that are not listed above.

According to the issue of The Listener published for the week of October 22 - 28, 2011, the prescribing of antidepressants has grown 40% here in the past five years. Pharmac estimates that 400,000 New Zealanders, or 10% of the population, are on antidepressants.

So how does this relate to hyperhidrosis (excessive sweating) and ETS surgery?

Last year, I became aware that the use of antidepressant drugs can cause serotonin syndrome in some individuals. Serotonin syndrome is a potentially life threatening drug reaction that causes the body to have too much serotonin, a chemical produced by nerve cells.

A common symptom of serotonin syndrome is excessive sweating not caused by physical activity.

Other symptoms of serotonin syndrome include:
agitation, diarrhea, fever, mental status changes such as confusion or hypomania, muscle spasms (myoclonus), overactive reflexes (hyperreflexia), shivering, tremor, unco-ordinated movements (ataxia)

If you have taken or are taking an antidepressant drug and have begun to experience excessive sweating, then suspect serotonin syndrome as the cause and seek help from a caring medical professional.

Do not let anyone diagnose you with hyperhidrosis and talk you into having ETS surgery without having investigated the possibility of serotonin syndrome being the cause of your excessive sweating.

The Kiwi ETS Group is aware of at least one New Zealander who had ETS with Dr Murray MacCormick for short-duration, excessive facial sweating that developed in middle-age. After having ETS, the patient went on to develop debilitating compensatory sweating that soaks through their clothes daily - a not uncommon side effect of ETS. An Auckland dermatologist who reviewed the patient's medical history post-ETS surgery concluded that they believed the patient had not been afflicted with hyperhidrosis but had in fact been suffering from serotonin syndrome as a result of the high dose of Aropax (an antidepressant) they had been taking over a two-year period before they had ETS surgery. Other typical symptoms of serotonin syndrome the patient had displayed were tremor and ongoing diarrhea.

A gradual adjustment in the dosage of Aropax this patient was taking, or a change in drug therapy, would likely have addressed the antidepressant side effects (serotonin syndrome) the patient was evidently experiencing. Instead, Dr Murray MacCormick, a private surgeon, diagnosed hyperhidrosis and performed ETS, irreversibly cauterising the patient's nervous system.

ETS is considered an absolute last resort option for someone with primary hyperhidrosis (not this patient) where all other alternative and less invasive treatments have been tried and failed (not this patient).

You can read more about the causes, symptoms, risks of, and treatments for serotonin syndrome here: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0004531/

Information for Australian ETS patients wanting to investigate making a formal complaint

Here are links for the various health complaint bodies in Australia.

www.hrc.act.gov.au
The Australian Capital Territory Human Rights Commission (established on 1 November 2006) has absorbed the functions of the former ACT Human Rights Office and the Community and Health Services Complaints Commissioner's Office, as well as having new functions in the area of disability services, and in relation to children and young people.

www.hccc.nsw.gov.au New South Wales Health Care Complaints Commission

www.hqcc.qld.gov.au/Pages/Home.aspx Queensland Health Quality and Complaints Commission

www.healthcomplaints.tas.gov.au Tasmanian Health Complaints Commissioner

www.health.vic.gov.au/hsc/ Victorian Health Services Commissioner

www.healthreview.wa.gov.au West Australian Office of Health Review

www.hcscc.nt.gov.au/ Northern Territory Health and Community Services Complaints Commission

Plus this is a useful site:

http://www.safetyandquality.gov.au/internet/safety/publishing.nsf/Content/contact-us-1lp

A natural treatment option for those suffering from severe/disabling compensatory sweating after ETS

Please follow the link below to the second ever post that was published on this blog, which is Briton Chris Carter's account of how he recovered, over a period of approximately one year, from ETS side effects - including severe compensatory sweating - by making long-term changes to his eating habits.

http://kiwietsgroup.blogspot.com/2010/01/in-case-anybody-reads-comments-on-above.html

"After one-and-a-half years of all these terrible side effects, I started to research the human body, starting with the ETS operation. Coming from an engineering background, I like to find solutions and answers to problems. After looking at all my side effects and what causes the same conditions in people who have not had ETS, I started to work things out from the results of all my tests and scans and I began looking at the op and the sympathetic nervous system in more detail.

"It took me about a year to fully come out of ETS side effects by changing my diet and lifestyle. For the last year and a half my body has been rebuilding. I was only going to get better as a result as coming out of the state of fight-and-flight...."


Thanks to Chris Carter for sharing this information.

A revealing published medical study on compensatory sweating after ETS (46 patients studied)

Below you can read the abstract (summary) of a study done in the United Kingdom and published earlier this year in the International Journal of Surgery. The study was also presented previously to the Annual Scientific Meeting of the Association of Surgeons of Great Britain and Ireland, Glasgow, UK (13th–15th May 2009).

Here is the link to the study's online abstract:
http://www.sciencedirect.com/science/article/pii/S1743919111000720

An analysis of the natural course of compensatory sweating following thoracoscopic sympathectomy

A.C. Currieb, J.R. Evansa, P.R.S. Thomasa

Department of Surgery, Epsom and St Helier University Hospitals NHS Trust, Wrythe Lane, Carshalton, Surrey SM5 1AA, United Kingdom

Department of Surgery, Division of Surgery and Cancer, Imperial College, London W2 1NY, United Kingdom

Received 28 March 2011; revised 12 April 2011; Accepted 13 April 2011. Available online 22 April 2011.

Abstract

Background
To evaluate the long-term results of thoracoscopic sympathectomy in the treatment of hyperhydrosis.

Methods
Theatre log books were used to identify all patients who underwent thoracoscopic sympathectomy between 2000 and 2006. Details of pre-operative symptoms, surgical procedure and post-operative complications were collected from the patient notes. Each patient was sent a questionnaire regarding success of the procedure, compensatory sweating and overall satisfaction.

Results
46 hyperhydrosis patients (34 females) age range 14–57 years. 20 patients suffered with hyperhydrosis in a combination of areas, 14 in the axillae alone, 9 palms alone and with 2 facial symptoms. There were 2 early post-operative complications, 1 haemothorax which required a chest drain and a chest infection. 3 patients required redo procedures. Of follow-up of 42 months (range 6–84), 32 (69·5%) patients reported complete dryness or a significant improvement in symptoms and 15 a substantial improvement in quality of life.

However, 43 patients (93%) suffered with compensatory sweating, of these 27 had to change clothes more than once daily. Compensatory sweating was graded as severe in 18 and incapacitating in 2.

Of note only 5 patients noticed an improvement in the compensatory sweating over time.

Only 26 (56%) would recommend thoracoscopic sympathectomy to others with hyperhydrosis.

Conclusion
Thoracoscopic sympathectomy is effective in the treatment of hyperhydrosis. However, compensatory sweating seems unavoidable and infrequently improves with time. Patients need to be carefully counselled before committing to surgery.

*****************

While this is but one study, it would be fair to say this is just one of many published studies on the side effects of ETS that shows ETS surgeons frequently do not reveal the true risks of the surgery to patients before they have the procedure.

Most ETS surgeons tell their prospective patients that the chance of developing compensatory sweating is around 1%, and that if compensatory sweating is experienced by the patient post-ETS, it will be 'mild' or 'just a little bit of sweating on your back or stomach'.

A reminder about the option of making a Treatment Injury Claim to ACC in New Zealand

This is just a reminder for NZ ETS patients who have made an official complaint about their surgeon or who are considering doing so.

Here in New Zealand, the Health and Disability Commissioner (HDC) essentially deals with investigating complaints and 'educating' medical practitioners if they deem it necessary. The HDC does not pay any sort of compensation to patients, even if they find a medical practitioner has not provided a reasonable standard of care to the patient.

To seek financial compensation for injuries/health conditions caused by a medical treatment, a patient needs to make a Treatment Injury Claim to ACC.

See more info here:

http://www.acc.co.nz/PRD_EXT_CSMP/groups/external_claims_care/documents/form/wcm2_020603.pdf

The Kiwi ETS Group contacted ACC in early 2010, to ask them some basic questions about the Treatment Injury Claim process. At the time, ACC informed us that seven people in New Zealand had to date made treatment injury claims in relation to sympathectomy surgeries, and six of those seven claims were accepted.

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.

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.

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."

"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.

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.

Reply to the HDC's decision on our complaint against Murray MacCormick

We felt that the Health and Disability Commissioner's December 2010 decision on our complaint against Auckland ETS surgeon Murray MacCormick warranted a reply. Below is the reply sent to the HDC, Anthony Hill, in early February this year. The Kiwi ETS Group would like to extend heartfelt thanks to those who shared their expertise and assisted with writing this letter.

***********************************************************

“Practices may develop in professions, particularly as to disclosure, not because they serve the interests of the clients, but because they protect the interests or convenience of members of the profession.” (King CJ, in F v. R, 1983. 33 SASR 189 (medical malpractice case))

“Sympathectomy is a last resort.” (Australian Doctor, 15 December, 2006)

Dear Mr Hill,

Your response (dated December 7, 2010) to my complaint on behalf of (name deleted for privacy; hereafter referred to as 'the/this patient') is problematic for a variety of reasons and fails to address key elements of the complaint. I wish to point out material facts and failings in your decision.

First, I protest your choice of ‘expert’.

Second, you have – crucially – failed to note that Dr MacCormick contradicts himself while defending himself: Dr MacCormick defended his diagnosis of primary/idiopathic (lifelong, of unknown cause) hyperhidrosis to your expert, Professor Justin Roake, yet admitted in writing to you that he knows AROPAX (the antidepressant medication the patient was taking at the time of her first consultation with Dr MacCormick) is well known for causing sweating in some patients. That Dr MacCormick is still contradicting himself at this stage is evidence of his incompetence and/or his desire to invent justifications with hindsight.

In a complaint process such as this, your role is to ensure that the public are safe and not exposed to predatory or incompetent practices and practitioners. Your duty of care is to the patient and it should have been within your duty of care to ascertain whether the medical conditions and symptoms of the complainant are related to the elective surgical procedure she was offered as a “treatment of choice”. You failed your duty of care and in your role to ensure that the rights of this patient were upheld, and that her complaint was taken care of fairly.

You have a social responsibility to ensure that others are not exposed to harm, either by Dr MacCormick or other surgeons who offer a seemingly safe procedure that turns out to be something else.

By considering it unfair to call on an expert with background in neurology, you give away the fact that you are not interested in either finding out the truth of this case or protecting the public, as indeed such an expert would have found that the effect of sympathectomy does go well beyond arresting sweating (especially in a patient such as this patient, who already has an autoimmune disease (diabetes) and is, therefore, more vulnerable when it comes to injury to/surgery on the Autonomic Nervous System (ANS)).

By this refusal to face the facts, you betray your role.

Here are my observations and comments on the findings of both you and your expert, Professor Roake.

Diagnosis
Dr MacCormick is not qualified to diagnose hyperhidrosis or depression. He is a vascular surgeon.

Because Dr MacCormick also made a mistake by prescribing a drug post-surgery that could interact with AROPAX (a mistake you and Professor Roake do not consider to be a further sign of his incompetence), it is clear that he had or has very little understanding of drug management of disorders not within his area.

Dr MacCormick was not qualified to make a decision on whether the antidepressant drug that caused this patient's facial sweating could not have been changed for another drug, which she might have tolerated better. This should have been discussed with the patient General Practitioner (who prescribed the antidepressants), or Dr MacCormick could have referred the patient to a psychiatrist with experience of treating depression. This would have been a responsible move by a caring medical professional.

Instead, Dr MacCormick offered an irreversible, destructive surgical procedure on the ANS, causing permanent nerve injury and countless side effects for an already depressed patient, even though Dr MacCormick is aware that even one side effect – compensatory sweating – that is absolutely unpredictable, can cause depression even in previously unaffected individuals.

Neurology and specifically the science of the ANS are not something within the qualifications of Dr MacCormick or Professor Roake, yet they feel authoritative enough to make decisions on who this procedure is safe for and who is a good candidate for the procedure.

“Opinion must be more than “distinguished”. Epistemically warrantable rather that reputationally based.” (Journal of Law and Medicine, 2006. Feb. Vol. 13, No. 3)

I strongly disagree with your expert, Professor Roake, who also is a vascular surgeon with no qualifications in neurology or the function of the ANS, that this patient was a good candidate for sympathectomy. An expert's opinion in the ANS and neurology should have been sought – not only for him/her to establish causation in this case, but to consider what the likely outcome of such intervention would be, and thus, what the patient disclosure should contain in order to qualify as informed consent.

No responsible surgeon – and you can spend many nights going through the scientific literature – will agree with Professor Roake that this patient was a good candidate for this surgery.

ETS is considered an absolute last resort option for someone with primary hyperhidrosis (not this patient) where all other alternative and less invasive treatments have been tried and failed (not this patient).

Primary hyperhidrosis is present from birth or adolescence (not this patient), and is not dependent on triggers such as medication.

No knowledgeable medical professional will agree with you that this patient had primary/idiopathic (of unknown origin) hyperhidrosis – this was Dr MacCormick’s diagnosis, as stated in paragraphs 1and 4 on page 3 of your decision letter dated December 7, 2010 – and the conclusions and credibility of Professor Roake are questionable. Dr MacCormick is not qualified to diagnose primary hyperhidrosis, and he could not have diagnosed primary/idiopathic hyperhidrosis when he freely admits that this patient's facial sweating was likely caused by the antidepressant drugs she was taking. The fact that ETS arrested the facial sweating does not prove Professor Roake’s conclusions; rather it illustrates his incompetence, bias or both. Professor Roake should know that Endoscopic Thoracic Sympathectomy (ETS) will disrupt nerve signals to the sweat glands (among many other structures and organs) and arrest sweating, no matter what the cause. The so-called ‘success’ in this case does not indicate that the patient had primary hyperhidrosis.

In his letter to you, dated 20 August, 2010, Dr MacCormick freely and of his own will admits to having been aware during his first consultation with the patient that she was taking the antidepressant AROPAX, and that he is aware this drug is “well known to cause sweats in susceptible individuals”. In this letter, under the subheading ‘Diagnosis and choice of treatment’, Dr MacCormick listed non-surgical treatment options for facial sweating as a side effect of AROPAX, concluding that these options were “not advisable” and “not .... safe or practical” and ETS could be considered a “treatment of choice”. Dr MacCormick failed his duty of care by offering an irreversible procedure that placed the patient in danger and had a significant chance of severe side effects, even though he knew the patient's facial sweating could be eliminated by a change in medical therapy. This indicates that Dr MacCormick placed his own (financial) interests above the safety and well-being of the patient in his care.

In addition, Dr MacCormick is not qualified to make decisions on various drugs that are on the market to treat sweating. If he feels such drugs are unsafe, harmful to patients, and ineffective, he should have contacted Medsafe to make sure such drugs are removed from the market so that patients are not harmed by using them.

Informed consent

“Known risks should be disclosed when an adverse event is common, even though the detriment is slight, or when an adverse outcome is severe, even though its occurrence is rare.” (National Health and Medical Research Council of Australia, Guidelines, 2004. Para. 1, p. 11)

“The standard for informed consent is that which a reasonable patient might expect rather than what a reasonable doctor might think (Rogers v. Whitaker 1992), and failure to fulfil requirements may be considered as medical misconduct.” (Coles Medical practice in New Zealand, 2011. Chapter 9, p. 88)

Informed consent is at the heart of patient’s right for self-determination, and a violation of this right (by deliberately withholding information that would have been necessary for the patient to form a balanced view of the procedure) is a violation of the patient’s rights, integrity, and the code of the profession.

I have little doubt that Dr MacCormick would have exaggerated the positives of ETS surgery; conclusions can be drawn from comments he made at a 1999 Royal Australasian College of Surgeons conference, which were later published in a major daily Australian newspaper. Please find a copy of the article attached to this letter. In addition, please also see this online article written by Dr MacCormick for the website Family Doctor, where he states that hyperhidrosis is classically a life-long affliction of no known cause (see paragraphs 3 and 6).

“With no underlying clinical need for surgery, and the somewhat entrepreneurial nature of ‘cosmetic/elective’ surgery, there is arguably a greater degree of inherent tension between the wish of the surgeon to sell his or her services, and the more rigorous patient selection required to protect the patient seeking such procedures from misconceived notions as to what may be their benefit.” (Bill Madden: Competence and Irrationality: Locating the Law, Australian Civil Liability, 2006. Vol. 3, No. 5 & 6)

When it comes to elective surgical procedures, it seems likely that disclosure will sometimes fall short of accepted standards. Most ETS surgeons describe their procedure as ‘safe, easy to perform, minimally invasive’, and ‘transforming lives for the better’, with either 100% or 99% effectiveness. This myth is maintained by constant repetition of the fiction. There is no independent scientific evidence in support of these claims. While ETS surgeons describe it as a brilliant ‘cure’, other medical professionals refer to it as having ‘adverse effects that are understated’, and a significant number of ETS patients describe the procedure as ‘the worst mistake of my life’.

You have not provided any evidence that the patient had the information necessary to make an informed choice. Crucially, you have not provided any evidence of the existence of the said “written material” provided to the patient, as stated by Dr MacCormick and Professor Roake, nor have you provided any evidence that the patient was given such a document. Perhaps I should have been provided with Dr MacCormick’s “written material” on ETS so that I could determine if it covers the subject well. I am afraid that if your office received this information, you failed to forward it to me.

In addition, there is no evidence that Dr MacCormick had a lengthy consultation with the patient, taking her medical history, giving a diagnosis, explaining alternative treatments and the pros and cons of each, and then explaining the surgical procedure, possible complications, frequent side effects and less frequent and severe side effects.

“Rogers v Whitaker (1992) 175 CLR 479 High Court Australia decision affirms that a doctor has a duty to warn a patient of any material risk involved in a proposed treatment. A risk is considered material if a reasonable person in similar circumstances would attach significance to the risk, or if the doctor is, or should be, cognizant that the particular patient would express concerns about the risk.” (Coles Medical practice in New Zealand, 2011. Chapter 9, p. 91)

While both Dr MacCormick and your expert are happy to refer to ‘compensatory sweating’ (and no other side effects), you should realise that this name is largely misleading. It is far from ‘compensatory’ and is in fact a symptom of dysautonomia, or deranged function of the ANS.

The question arises: why would Dr MacCormick offer an irreversible surgical procedure to a depressed and vulnerable patient who is stressed over her facial sweating, when he knows all too well that the resultant so-called compensatory sweating can be just as bad, if not worse, for the patient?

“Patients who have a complaint about the care or treatment they have received have a right to a prompt, constructive and honest response, including an explanation and, if appropriate, an apology.” (Good Medical Practice: A guide for doctors, Medical Council of New Zealand, Dealing with adverse outcomes, June 2008. Point 34, p.13 (http://www.mcnz.org.nz/portals/0/guidance/goodmedpractice.pdf))

Dr MacCormick refused to see the patient when she wrote to him in April 2010. I have little doubt that he treats his other unhappy patients who are dissatisfied with the outcome of their procedure in a similar fashion, and refuses to acknowledge some of the severe consequences ETS can have.

It is not in the interest of the patient's emotional wellbeing to meet with Dr MacCormick and his offer to meet in his letter dated August 20, 2010 is 5 years late, and would cause further trauma and have no resolution. There is no doubt that Dr McCormick continues to believe that he behaved and acted in an impeccable professional manner, and your finding just confirms this.

No doubt the offer to meet with the patient (for what purpose?) came only to make him look like a caring doctor. Sadly, the facts do not support this image he so wishes to portray.

Summary
I refuse your finding that the patient was provided “appropriate information”. Appropriate information would have included quotes such as these (or a layman’s version of), and more:

“T(2)–T(3) ganglionectomy significantly decreases pulse rate and systolic blood pressure, reduces myocardial oxygen demand, increases left ventricular ejection fraction and prolongs Q-T interval. A certain loss of lung volume and decrease of pulmonary diffusion capacity for CO result from sympathectomy. Histomorphological muscle changes and neuro-histochemical and biochemical effects have also been observed.” (Clin Auton Res. 2003, Dec; 13 Suppl 1:I40–4)

“Forty-one percent of the participants claimed that their quality of life decreased moderately or severely as a result of Compensatory Sweating.” (J Pediatr Surg. 2007, Jul; 42 7:1238–42)

With no awareness of such information and, therefore, no opportunity to discuss the wide-ranging effects and consequences with Dr MacCormick, the patient was not provided with sufficient information to make an informed choice.

Furthermore, your ruling that it would be “unfair” to consult a neurologist on this case to ascertain causation is unacceptable, irrational and contrary to your duty of care. Indeed, this is the most important point of the case, but your wilful refusal to even consider the implications this surgery might have – and not just for this patient but for many other unsuspecting patients who volunteer to undergo an elective procedure – allows the continuation of this practice to go unchallenged. By refusing to acknowledge the facts and turning away from the problem, you have become part of the problem. Not quite the role the commissioner should play.

For some unexplainable reason, you suggest that the patient should see Dr MacCormick and consult with him on the disabling side effects she now has. The patient approached you to protect her (and others) from medical professionals like Dr MacCormick, and you failed to act on her behalf.


The CONTRA PROFERENTUM rule may be invoked by the patient in interpreting the consent form. According to this rule, if there is any ambiguity in a written document, it should be interpreted against the interest of the person seeking to rely on it – that is, the doctor.

“His Lordship referred to American authorities, such as the decision of the United States Court of Appeals, District of Columbia Circuit, in Canterbury v. Spence ((18) (1972) 464 F 2d 772), and to the decision of the Supreme Court of Canada in Reibl v. Hughes ((19) (1980) 114 DLR (3d) 1), which held that the “duty to warn” arises from the patient’s right to know of material risks, a right which in turn arises from the patient’s right to decide for himself or herself whether or not to submit to the medical treatment proposed.” [ROGERS v. WHITAKER [1992] HCA 58; (1992) 175 CLR 479 F.C. 92/045]

“Given that it is a rarely performed procedure, the number of claims we have experienced appears to be disproportionate. It is a highly elective procedure, so in the event of an adverse outcome, any claim can be difficult to defend. There is also concern that some medical practitioners may be performing Endoscopic Thoracic or Cervical Sympathectomies with little or no specific training in this procedure.” Lyndall Hillbrich, The Medical Defence Association of Victoria Ltd.

The numbers tell a story....

These are the pageviews for this blog, by country, from May 2010 up to today:

New Zealand 696

United States 168

United Kingdom 141

Australia 121

Canada 34

Russia 34

Ukraine 26

Netherlands 25

Peru 23

Spain 18

This blog received 200 pageviews in January 2011 alone, from the following countries (in order of highest to lowest number of pageviews): New Zealand, Australia, United States, India, United Kingdom, Singapore, Canada, Germany, Malaysia, Netherlands.

Common key words used in Google searches that lead to this blog are:
endoscopic thoracic sympathectomy disability

HDC decision on complaint against Auckland ETS surgeon Dr Murray MacCormick

In December 2010, we were informed by letter that New Zealand's Health and Disability Commissioner, Anthony Hill, had found in favour of Dr Murray MacCormick.

Here are links to the HDC's decision letter (one link leads to one scanned page, so five pages/links in total):
page 1
page 2
page 3
page 4
page 5

Note the commissioner's comment on page 4 about how it would be "unfair" for him to request advice from a neurologist!

And here are links to the earlier letter that Dr MacCormick sent to the HDC when they approached him to hear his side (two links to two scanned pages):
page 1
page 2

The expert chosen to aid the HDC's investigation in the case, Professor Justin Roake, is a vascular surgeon who works at a private practice in Christchurch, New Zealand, that offers Endoscopic Thoracic Sympathectomy (ETS).

ETS is, in best practice, supposed to be a last resort treatment for those with primary (lifelong, of unknown cause) hyperhidrosis, when all other treatments have been tried and failed. Even then, it is a surgery that comes with a significant risk of adverse side effects.

The New Zealand ETS patient who this complaint was made on behalf of never actually had primary hyperhidrosis. She was simply suffering short-term (duration two years approx. in middle age) excessive facial sweating, and other problems such as tremors, as side effects of the high dose of the antidepressant AROPAX she was taking in 2004/2005. The failure to realise this on the part of her prescribing GP, Dr Paul Fur, who referred her to Dr MacCormick, is disturbing. And Dr MacCormick's behaviour - in offering this patient ETS and describing it as a "treatment of choice" while acknowledging in his letter to the HDC that AROPAX is "well known to cause sweats in susceptible individuals" - speaks for itself.

The patient feels that her already severe Compensatory Sweating (CS) - a common adverse side effect of ETS - is getting worse: she gets soaked in sweat from her chest to knees daily in warm and hot weather. In addition, she has been experiencing other health issues that may be related to ETS. She has spoken several times of how she has contemplated ending her life because of how the CS has affected everything - her professional life, her social life, her quality of life.

Any New Zealand ETS patients contemplating making a formal complaint about your ETS surgeon, please feel free to reference this complaint in support of your own. The reference number is: C10HDC00679

The outcome of this complaint has been disappointing, to say the least. But it has created a paper trail that other New Zealand ETS patients can reference and use as a resource when making their own complaints.

It is vitally important that ETS patients suffering from the devastating side effects of this elective surgery make formal complaints about their surgeons who did not disclose during pre-surgery consultations the many frequent and less frequent adverse side effects of ETS. Eventually, the number of complaints will add up, and the authorities will be forced to act.

In the mean time, we have the power of the Internet. In the case of this recent complaint, the HDC did not even come close to 1) ensuring that the rights of the patient were upheld, and 2) investigating the complaint fairly - as is the Commissioner's role. However, this does not mean the Kiwi ETS Group has failed. We are still here and we are still one of several voices on the Internet warning those considering ETS surgery that the outcome of ETS surgery is often nothing like what your surgeon will promise you. This irreversible surgery does leave a significant number of patients with serious health issues that have devastating, life-changing effects, such as bradycardia, severe compensatory sweating, ongoing neuropathic pain, erectile dysfunction, and anhidrosis and the associated impaired thermoregulation, to name but a few severe and not uncommon side effects.

The wealth of published medical research on sympathectomies supports this truth, as do the testimonies of the many suffering patients. While those in power might currently choose to look the other way, they cannot silence either these testimonies or the medical research documenting the risks of ETS.