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.