Marie's ETS and Reversal Story
From Corposcindosis
My name is Marie, I am 28 and I am a teacher. I have had HH in my underarms since I was 15 or so. My mother and a few of her brothers also seem to be suffering from it. In High School, I tried men's and aluminium anti-perspirants, but none worked. Of course our family doctor didn't know much about HH so nothing else was ever suggested. My HH was never severe, nevertheless bothersome. It also gave me frequent colds and body temperature problems. I was always cold, even when others would want to turn on the aircon. I'd wear a fleece when my co-workers had a t-shirt on in the staff room. Even when I was cold, my underarms would still be sweating. I managed to get through Uni and my 20's most normally, with an active social and physical life.
I don't know how it happened really, but I suddenly got really fed up with it last year, when I lived in a tropical country. Even in hot weather I would be cold and sick, but I would still sweat. I wanted to get rid of my HH once and for all. I started to do some research, and was amazed to see how many of us were out there. Then I found that there were a few ways to possibly get rid of it: drugs, botox and ets. Drugs were out off the question from the start; I just don't believe it's good for your body to receive a constant amount of chemicals. I looked into botox, but it didn't seem to work permanently for armpits, and it was much more than I could ever afford. Then I discovered the excessive sweating website. The surgery was described as minor, and very successful. Side-effects were frequent, but very tolerable by patients, and much easier to deal with than the previous condition. (Where are those lucky ones?) I found other websites, most of which displayed positive sides of ets and encouraging testimonies, but with very little on reversals. Finally got the phone number of a doctor in Toronto, and I should have listened to him. He personally didn't believe that ets worked for armpit sweating, and so didn't perform it. Then I found Dr. Lin, who happened to be living one hour away from me. How's that for an omen?
We emailed for a few weeks, and he answered all of my questions. He assured me that he could cure my HH without what he called "reflex sweating". I thought this meant the compensatory sweating (cs) that other patients were talking about. [Dr. Lin is indeed one of the best surgeons in the field, and I am glad I chose him as I have since heard of cases of scaring problems, Horner's syndrom and others. If the tone of this testimony seems in any way to be accusing towards Dr. Lin, please ignore it as I am well aware that I am the only one to be blamed in my misery.] I emailed one of his patients who lived in Texas, and she seemed to be very happy with the surgery. She had some cs at times when it was very hot outside, but otherwise she was very pleased with the ets.
Somehow I was convinced, although in retrospect it seemed too good to be true. I was naive for believing that doctors were out there to help us, not make money out of us; I was lazy because I didn't research it as mucn as I should have; I was impatient as I should have tried medications, creams and botox before going to a surgery; I was vain in believing that negative things happening to other people couldn't possibly happen to me. The only reproach I have for Dr. Lin is his lack of honesty. One of the main reasons why I chose the ets was because it was supposed to be reversable. "If it doesn't work, I'll get the clips out!" He forgot to mention that the reversals didn't always work, and indeed, they rarely seem to work fully . He said that only " a couple" of his patients had had a reversal because they were unhappy with the outcome of the surgery. He also said that cs would appear only during "intense heat" (which turned out to be anything above 15 degrees centigrade, or 10 on a sunny day) and "intense exercising" (read walking to the train station, and climbing a flight of stairs). All a matter of perspective I guess...
I got the ets on July 27th 2002. My arms and chest had completely stopped sweating from fingers to shoulders. They weren't even moist in the heat, which was a bit spooky. My feet were sweating often, and my hands felt very cold. I felt fine for a couple days, then strange things happened: I felt claustrophobic; I could feel the foreign bodies inside me. The cs was intolerable in the 35 degrees heat. I even fainted a few times in the street, and felt dizzy constantly. I was often feverish and dehydrated. (I still feel these) I had enormous chest and upper back pain, and my breasts were so sensitive I had to hold them to walk down the stairs (and I am quite petite). I emailed Dr Lin and he reassured me that the pain would go away soon (which it did), and that I should take more pain killers, which I did since I couldn't walk, sit or sleep. He gave me some Ditropan for the cs which didn't help at all and made my eyes and mouth very dry. He also said that the "reflex sweating" would go away when the sweating returns to my head. It returned, but the cs didn't stop. I expressed my concerns to Dr Lin. His questions: "do you sweat all the time, or only when it's hot or when exercising?" I said as soon as I move around a bit, or go outside. (it was summer) "Ah! that's not reflex sweating but cs my dear, the consequence of me clipping your T3." So when's that going away? Never? "Of course", he assured me, "if you are not happy, we should do the reversal very soon, it may not work if we wait..." Now you tell me. It seems like whether clipped or cut, the nerve cannot repair itself. That's when it hit me: shock, anger, despair.
I got the reversal on August 28th 2002, exactly 33 days after the original ets. Dr. Lin met with me before, and told me that it should take 3-6 months for my initial condition to return, and the fact that I exercise regularly should help. Whatever. By then, I wasn't believing a word of his. I just wanted these stupid clips out of my chest. No pain in the chest after the reversal, but the scars took 4 weeks instead of 1 to heal. Couldn't breath for a few hours when I awoke from the surgery, like running out of air on a diving tank. At the time, I thought it wouldn't be such a bad thing to run out of air completely. I'm not trying to be melodramatic, just truthful; if you're going for the ets, you've got to know what awaits you.
3 months after the reversal, my right armpit started sweating during my long runs. The same happened with the left arm a month later, to a lesser extent. I am now at month 6, and here is my physical condition. My feet are sweating constantly if I wear shoes, even if it's freezing outside. So I only wear socks while inside. Both my armpits sweat during exercise, and the rest of my lower body floods. I have to change t-shirt at the gym and wear tight shorts under running shorts. I still have cs in my back , tummy and legs when I don't exercise, but it seems to be less than before. However, it is winter here in Japan (yes, I had to move out of Taiwan), so I am not getting my hopes too high. If it stays the same when the humid summer gets here, then I will be very happy. I have to take off my jacket when I enter a 7-11, even if it's only for 2 minutes, or my back, tummy and upper legs will start sweating; I spend all day walking very slowly, avoiding stairs or sunny areas on the sidewalks otherwise I will break into a sweat; I can't wear a backpack or it will make my back sweat immediately; I always wear underclothes; hands and feet always cold; I am either freezing or sweating; feel dehydrated regularly; crave salty food, which was never the case before the surgery.
I have had a lot of problems with both insomnia and intense fatigue. Some weeks, I lack energy in a way that I had never experienced before. Getting up for work in the morning just isn't fun anymore, as I know that I will spend most of the day wondering if my students can notice the sweat through my clothes (maybe I should get a desk job like everyone else, where I don't have to jump up and down all day). Other weeks, and this was especially true soon after the surgery, I am exhausted but don't seem to be able to fall asleep in any way. I am not sure if my energy/sleeping problems are direct or indirect causes of the surgeries, and simply due to depression and lifestyle changes. Either way, I had never had such problems before.
I also seem to have problems with my joints, although I really don't see, biologically, how this could have anything to do with the surgey. I can't sit in the same position for very long or my joints hurt and feel locked. I am also constantly eating, and will probably start putting on weight soon as I don't have the energy to exercise as often as I used to. It is very disappointing to suddenly realise that I may never enjoy playing soccer in the sun, walking in the park, taking some sun or going on a beach holiday, which are all things that used to be among my favourites. Of course these aren't essentials in life; I've still got both my legs and arms. Nevertheless, I feel cheated.
On the psychological side, I am very depressed and my level of energy is about half of what it used to be. This has affected my work with young children very much. I am staying away from any social events and I haven't made any efforts to meet anyone in this new country. My body disgusts me and my libido is null. So is my desire for most things that used to make me happy before. I am always unhappy and unsatisfied with everything from my work to the way my hair should look. I had several suicical thoughts for the first time in my life. I wake up in the morning, go to work and come back home. That's it. Just the thought of having to go out again is distrubing as I have no more energy to fight the cs. Much rather stay in the tub with a good book.
I don't wish this to anyone, and consequently I would not recommend an ets, no matter how severe your HH is. You will stop sweating form your hands, armpits or head, but the rest of your body will sweat twice as much, and other problems, much more important, will arise. Not a good trade-off at all.
Good luck everyone with your fight. For the ones that are even considering an ets, this is for you that we are telling our stories. It was the biggest mistake of my life, so please stay away from it.
Marie
