Showing posts with label published research on ETS. Show all posts
Showing posts with label published research on ETS. Show all posts

Sunday, July 29, 2012

"The literature does not support the claims that a lowered level of sympathetic ablation results in less compensatory hyperhidrosis"

Some ETS surgeons, particularly in the United States, claim that their version of ETS results in fewer side effects because they operate only at T4 (thoracic vertebrae level 4) on the Sympathetic Nervous System.

These ETS surgeons typically claim that sympathectomies for hyperhidrosis or facial blushing performed at the T2, T3 or T2 and T3 levels are more likely to result in side effects, in particular the common ETS side effect of compensatory sweating, aka compensatory hyperhidrosis.

Many ETS patients experience compensatory hyperhidrosis to varying degrees that affects mainly the trunk (back, chest, stomach) and sometimes the groin and legs. A significant number of ETS patients report that their compensatory sweating is so severe that the excessive sweating on their trunk (and often groin and legs) soaks through their clothing every day, leaving them professionaly and socially disabled, fatigued, and with much worse quality of life compared with their pre-surgery, localised hyperhidrosis condition.

Naturally, compensatory sweating is a much-feared side effect of ETS among prospective patients - unsurprisingly, none of us want to swap sweaty hands, a sweaty face/head, sweaty underarms or a blushing face for a dripping wet torso, groin and legs.

Aware of this fear among prospective patients, some ETS surgeons have been claiming for several years now, with no scientific basis, that by performing ETS at the T4 level only, the chance of compensatory sweating developing as a side effect is greatly reduced.

Well, researchers Kopelman and Hashmonai at Ha'emek Hospital in Afula, Israel, reviewed much of the published literature on ETS surgery to evaluate the validity of the claim that a lower level of sympathectomy, and other techniques such as limiting the extent of nerve ablation (aka limiting the number of nerve levels cut, cauterised or clamped), reduces the occurrence of compensatory sweating.

Their paper was published in the World Journal of Surgery in Nov. 2008, and their conclusion was that there was no validity for the claim. Their conclusion stated:

"The compiled results published so far in the literature do not support the claims that lowering the level of sympathetic ablation, using a method of ablation other than resection, or restricting the extent of sympathetic ablation for primary palmar hyperhidrosis result in less compensatory hyperhidrosis. In the future, standardization of the methods of retrieving and reporting data are necessary to allow such a comparison of data."


Link to the abstract of this study:
http://www.ncbi.nlm.nih.gov/pubmed/18797962

So what does this mean if you are considering ETS surgery and worried about the side effect of compensatory sweating?

If any surgeon tries to claim that their version of the surgery is less likely to cause side effects such as compensatory sweating, I encourage you to be wary of what is effectively marketing spin with no scientific basis. It is your (only) body and your health. Do your research: read about the Sympathetic Nervous System, talk to others who have had the surgery, and read the online testimonials of ETS patients. Note the wide range of levels (T2, T3, or T4, or combinations of) that patients who did and did not develop compensatory sweating (and other side effects) were operated on. In addition, note the different types of surgical method used for different patients when you read their testimonials - were their nerves cut, clamped or cauterised?

Do testimonials from different patients operated at different levels, using different methods, often mention side effects - sometimes severe, life-changing side effects?

Do patient testimonials support the claim of some ETS surgeons that one method of surgery is safer than another and guarantees specific results?

For example, I was cauterised at T2 only - a level that some ETS surgeons claim is associated with much greater risk of compensatory sweating if operated on. Yet I have never experienced any compensatory sweating in the 11 years since I had my surgery, but I know of others cut or cauterised at T2 only who have experienced everything from mild to severe compensatory sweating (and other adverse side effects). And I have read testimonials of at least two ETS patients clamped at T4 who experienced severe compensatory sweating.

Images of severe compensatory sweating, courtesy of an Italian ETS patient:

http://www.ago972.altervista.org/index.html

Friday, September 23, 2011

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'.

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."