Who We Are And What We Are Trying To Do

We are a group of people who have come together to tell you about another side of ETS (Endoscopic Thoracic Sympathectomy). We come from the U.S., Sweden, the U.K., Australia, Canada, Denmark & Norway. We've heard similar stories from people in Africa, Italy, Spain, Korea, Taiwan, and Portugal; in fact from countries all over the world. We'll tell you things you won't read about on the surgeon's websites or in glossy magazines. Radio & TV ads practically guarantee a quick and painless cure for your sweaty hands and that embarrassing blush or social anxiety.

We're here to tell you what it really means to wake up after ETS surgery with warm, dry hands or skin that is no longer flushed and red. We'll tell you how it feels to be finally rid of that anxious rush of adrenelin.

It's been said that a small percent of the people having ETS will regret having the surgery. There's still no proven method of determining who will and who won't end up being in that group. Are you willing to gamble that the odds are small and everything will turn out in your favor? Do you think that nothing could be worse than a life being ruined by sweat or blushing or anxiety? Are you really sure that choosing an experienced surgeon will guarantee that you will be free of the disabling side effects you might have heard about? Think carefully about what we have to say; it may be the only warning you'll ever see.

We want you to question your surgeon about the 98-100% cure rate. Make them tell you how they arrived at those numbers. The testimonials you read are frequently from people immediately after having the surgery. Often the side effects don't show up until months or even years later. Would you consider yourself cured if your hands are bone dry but the rest of your body is soaked in drenching sweat? Are you 98-100% cured if you now suffer fatigue, hair loss, allergies, and impotence? If you're athletic, think about losing the ability to sweat from the nipple line up, how that would affect your ability to engage in sports. What we're trying to do is make you aware of the potential dangers ahead if you decide to have ETS. There are many side effects that are never mentioned by the surgeons, or even outright denied. But we're here to tell you different.

Whether you choose to listen to us or not, this is what happened to us, our personal experience with ETS and how it's affected our lives and the lives of the people we live with.

Compensatory Hyperhidrosis (Compensatory/Reflex Sweat commonly known as CS)

A medical term used to describe sweating on parts of the body that otherwise would not sweat so much. Compensatory sweating is one of the side effects of sympathectomy and affects most or all patients. Most of the patients will describe it as mild to moderate and in about 5% it will be described as severe.

Hot climate gives more severe sweat. I was thinking about situations that trigger CS and sometimes I feel it starts without any clear reason. That makes it so stupid. When I stand by my workbench in my kitchen making some food, my knees start to sweat, but only sometimes. Or when I am shopping, suddenly the sweat starts to flow from my back. I do not have to feel the situation is special stressed and the temperature may be normal. The CS/RS has an unpredictable side also, that is my experience, and you never really know when it starts. Also psychological stress triggers CS. (LH, May 2003)


The total body sweat after ETS is much greater than that before ETS. Furthermore, this only has part of the body (below the nipples) to show itself. The area of the body which is now unable to sweat, previously accounted for about 44% of the sweat of the body. This is now redirected downwards. Triggers for sweat are heat, physical exertion, stress. CS may not become a major problem till some time after the operation. (GR, May 2003)


What really bothers me about CS is the feeling of it starting. It drives me crazy mentally, along with really bad anxiety. (SW, May 2003)

Picture of Post ETS Compensatory Sweat

Fatigue

When the body is subject to heat stress, it will fatigue. A specific form of human inadequacy in which the individual experiences an aversion to exertion and feels unable to carry on. A systemtic disorder that gives a loss of vital and nervous power.

My severe thermoregulatory disruption, in which I suffer from extreme, painful overheating of the torso and limbs, is the direct cause of my debilitating fatigue. For others who have suffered from lesser injury to the sympathetic chain, a more subtle thermal disruption is still a likely culprit.

Difficult to describe to someone who has a healthy sympathetic nervous system, except to imagine how you feel after sitting in a hot sauna, at the point in which you need to leave because you can't take the sauna's heat anymore. It's an internal heating that is very intense, artificial, overwhelming, and radiates throughout the innervated areas. (SA, May 2003)


As I understand the feeling of fatigue can be provoked for many reasons and have different strength. It can change from day to day, and from season to season (temperature, light...), it depends on our mental condition at the moment, our experiences and so on. In my body I always feel there is a light chronic fatigue, like driving a car with the handbrake on. In a lot of situations I can feel OK for some time, and also the opposite, my body feels like a stone, my mind also. Only to walk upstairs can be very heavy one day, the next day it is not a problem at all, but I have still lost a lot of my vitality (in general). When we get fatigue after this surgery we get it for life, as I understand it. (LH, May 2003)


FFSO has long recognized a similarity between our symptoms and Chronic Fatigue Syndrome and Fibromyalgia. (GR, April 2003)


I believe that ETS significantly lowers the normal output of this important gland (adrenal) by gettig improper data from a now dysfunctional SNS. Just my theory for what it is worth and not saying there aren't many other mechanisms, glands and organs involved. I just think the adrenal is right at the root of possible improvements. (BJ, April 2003)

Thermoregulation

Probably the most important factor causing thermoregulatory disruption is that ETS corrupts peripheral blood flow in the human body, leading to abnormal, artificial coldness in the denerved/sympathectomized regions, caused by contra-lateral vasoconstriction. Correspondingly, there is compensatory vasodilation in the remaining areas of sympathetic activity, leading to abnormal heating and thermoregulatory disturbances.

In lay terms, this means that ETS destroys the body's ability to send blood to the tiny capillaries of the outer skin in the widespread areas of denervation. This is how the body's thermostat, the sympathetic nerves, normally control and regulates body temperatures internally, by sending "heated" blood to the outer body surfaces. Correspondingly, there is compensatory blood flow to tiny capillaries of the outer skin in the widespread areas of remaining innervation; i.e., the lower torso, legs, buttocks, and groin.

It is just one of the many dirty little secrets that the ETS industry and the majority of its nerve-severing/crushing practioners purposely omit from their patient disclosures/consulatations. The thermoregulatory corruption and the extensive area of destructive upper torso anhidrosis, are two of the most glaring omissions that the ETS 'surgeons' are withholding from their ETS victims when discussing this brutal, nerve-severing mutilation. They know full well that if they did disclose these vital facts, many of their profitable ETS victims would opt to forego the surgery. (SA, May 2003)


Pehaps this also explains why, when there is any sort of light pressure on my torso, abnormal red marks appear and linger for many minutes. What I don't understand is how easily I get goose bumps, even when it's not cold. (GR, May 2003)

Medications

Many people opt for surgery in order to avoid a lifetime of taking medications like Robinul and Ditropan for the rest of their life.

"Medications do exist that may lessen the effects of CS. The most useful medications are Robinul Forte and Ditropan."
(found on Hands Dry Website, Dr. Garza)

I wanted to experiment to see if thyroid med (in low dose) would have any effect on my allergies or any other ETS conditions. I did not have a thyroid problem prior to ETS. I really believe my primary allergy problems and lessened "runners high" are linked to a reduced Cortisol output of the adrenal glands and would like to figure out a way to bump up tis production without taking steroids with all their side effects. I want to get better long term and not worse! (BJ, January 2003)


I did try Eltroxin when the working theory about my health problems was ME/CFS. I didn't see any improvement at all. (ESS, January 2003)


I have tried a medication for CS some days now. It is called Scopoderm. (MS, December 2003)


I have been taking Adderall for about a month. Going to check with my doctor about adding Wellbutrin back with the Adderall. (SW, March 2003)

ETS'ers Talk On Bulletin Boards

For me it was the biggest mistake I have made or am likely to make for the remainder of my life. Hindsight is a wonderful thing, but I vaguely remember the person I used to be before ETS f&%@'d up my life some 20 months ago (domestically, professionally, physically and emotionally) for what now seems like a fairly insignificant problem I could and should have controlled with medication. Unfortunately the doc's websites paint a completely false picture of it being a simple out-patient surgery with few side effects. I was lured into a false sense of security by their bullshit websites, and will regret this for a very long time to come. ETS, for me, was butchery. Compensatory sweating that's too horrendous to fully describe, a flushing face, increasing overheating of the face and redness to the face (the god damn thing it was meant to fix in the first place). Every single day, I rue the day I ever heard of ETS. (Ollie, November 2002)


Inability to concentrate seems to be common after ETS. Anxiety seems to increase post ETS too, apparently an effect of too much serotonin (too 'high" if you like). (MA, March 2003)


My allergies are ridiculous. My eyes are either watering or so dry my eyes burn. Sometimes I wonder if I got a mild case of Horner's though my pupils seem to dilate properly and my eyelid does not droop. My nose gets very dry and stuffy though strangely things have been clearing up for a week, then going bad for three weeks the past few months. Some days I actually think things are getting a bit better and am feeling better, then I hit rock bottom again as things seem to be deteriorating worse than ever. (BJ, February 2003)


We are unlike anything most doctors have ever seen. (SW, February, 2003)


I am a tool and die maker who owned his own small business. The fatigue and stress forced me to sell out. I then worked for the guy who bought me out. It got harder and harder to work (I used to regularly work 50-60 hours a week). Until about 3 weeks ago, I hadn't worked for 6 months and seriously considered disability, but my sis and brother-in-law gave me a desk job at their company and I only work 6-7 hours a day which makes it tolerable. However...I am dreading the warmer months. They don't have AC, and it's going to be tough this summer. (GR, February 2003)