Have you had ETS surgery? Please share how did it go for you


    • Keymaster
      Rohit on #603

      Many of us would be interested in, but apprehensive about ETS surgery. If you have tried one, or know someone who did, please share your experience.. was the surgery effective to treat your Hyperhidrosis?

      • This topic was modified 5 years, 10 months ago by  Rohit.
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    • Participant
      Casper on #992

      I once spoke to a woman who had a successful ETS surgery to cure her sweaty hands. She is a pianist, meaning she was in a huge need of a permanent hyperhidrosis cure. This was the main reason why she chose ETS. She said the hyperhidrosis surgery successfully stopped her palms from sweating, but there was compensatory sweating as a consequence of the procedure. =/ She was fine with compensatory sweating, as long as her palms – the tools of her trade, you could say – were dry. =)
      That's the only case of ETS surgery I know of. =]

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    • Participant
      Vivian Morden on #998

      I have always wondered why people decide to take that big step and undergo an irreversible sweat gland removal (or snip their nerves – that's equally irreversible). Your story of the pianist actually sheds some light on this for me. I can absolutely understand why someone like that would be desperate to get a proper and permanent cure – and hyperhidrosis surgery seems to be it. Maybe I'm a coward, or maybe I'm not desperate enough, but permanent drastic solutions scare me. 😐

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    • Participant
      JR31 on #2851

      Hi. Have just signed up to the forum, so thought I would post my experiences of surgery for hyperhidrosis.
      I'm 31 years old now, and it's nearly sixteen years since I first had ETS for palmer hyperhidrosis (followed in 2001 by a lumbar sympathectomy by plantar hyperhidrosis).
      The operations were quite successful in terms of giving me dry hands and feet, but the side-effects over the last thirteen years have been awful, and for me personally 10x worse than anything I ever went through as a child / teenager with sweaty hands and feet. Side-effects include severe compensatory sweating, a constant overheating / burning sensation in much of the body (probably from now being unable to sweat through areas like the underarms and face), headaches, and many others.
      My reason for surgery was that it was simply presented to me by a terrible dermatologist (terrible because she apparently had no knowledge of iontophoresis, despite it's existence for thirty or forty years by that point) as the only alternative to a lifetime of sweating (to the point of dripping) hands and feet, the prospect of which I could not bear. If I had known about iontophoresis and the other non-surgical treatments at the time that I now know about, I would have stayed as far away from surgery as possible. In my view it is an awful procedure, and the side-effects and permanent damage just isn't worth it. But, unfortunately it was many, many years ago that the operations happened, before I even had the internet and the luxury of Googleing the operations beforehand like I would do now!
      Anyway, that's very briefly my experience, and it's great to be part of another hyperhidrosis community. 🙂

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    • Sheri on #2868

      I had the surgery in the late 90s. Worked like a gem for a few years and slowly started creeping back. Plus, now I have compensatory sweating. So, not really an inch of my body that doesn't sweat.
      I had tried the electrical current thingy for my hands, but I was allergic to the wool pad.
      I know have a PTSD diagnosis, which makes the Hyperhidrosis even more (is that possible?). I avoid crowds and people I don't know. I don't eat out that much because of my gustavatory (sp?) response soaks my hair and face.
      Currently I find Klonopin works the best. I don't crave it, but after my PTSD diagnosis “they” decided to try other cocktails & take me off Klonopin. At one point I was on 20+ pills a day!
      I never really slept during that time & I was sweating constantly. My internist finally put me back on it and I'm much better. I am off the other 20 some meds. But at least I sleep, don't sweat (as much), but life is…challenging at times.
      My theory for the Klonopin is it helps slow down my SNS which tends to be in over drive with my hyperhidrosis, but multiply that because of the PTSD dx.

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    • John Lee on #3615

      I had ETS on T3/T4 in January 2011. It stopped sweating from my arms and face. So it's definitely not a T5 thing. Some people after T3/T4 can still sweat on the head. Before my surgery I was almost certain I'd still be able to sweat from my head, but I was wrong.

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    • Participant
      Perry George on #3861

      I had a spinal cord injury at T2 about 12 years ago and immediately had severe hyperhidrosis above that level reaching to my scalp. After two years living with this I had the ETS surgery with removable clips. The problem areas were immediately resolved. After a few weeks I began to experience severe compensatory sweating on chest, back, and full length of arms. It became so bad that I went back to my surgeon 4 months after the initial surgery and asked to have the ETS clamps removed. It was apparently too late and the removal did not cause a return to the original state. Several years after the removal, I am now experiencing hyperhidrosis in both areas above and below T2 spinal injury. I have difficulty wearing business clothing and now work at home. I rarely go outside if over 75F. This surgery was probably the worst decision I have ever made and greatly affected my quality of life. -Perry

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    • Sanjo on #4348

      I first noticed this problem at school when i was 16. I had to always wear a t-shirt underneath my school shirt, luckily it was the fashion back then so no-one questioned it.

      It was only the armpits at first, then I started noticing I left sweaty marks on the plastic chairs i sat on during the final school assembly in summer. It's got worse and worse as I have get older and it's now an all over body sweat. I can simply sweat from the tip of my head to the tip of my toe in the middle of summer and it's simply ruined my life.

      When I was 18, I eventually plucked up the courage to go and see a skin specialist as recommended. He prescribed Fuciderm for my feet as the sweating led to fungal infections. This stopped the infection overnight, although didn't stop the sweating so infections would re-occur, and it's effectiveness has decreased over the years.

      I have also had Iontophoresis on my back, this was a complete waste of time and only left burn marks on my back.

      I'm slowly giving in to a life of suffering until i heard acupuncture might work, but have read many stories of unsuccessful endings. If i suffer from all over sweating, then is surgery the answer? I know many have complained with compensatory sweating to other areas after this, but if i sweat everywhere then it can't hurt? Glad to hear from anyone with any advice on acupuncture or surgery.

      Reply
    • Bonnie Scott on #5136

      I have had hyperhidrosis early childhood. It involved my hands, face, underarms, and feet. I worked in a hospital back in the year 2002 and had problems with paper charting due to my hyperhidrosis. One of the general surgeons had become certified to do ETS. I had asked him if I would be a good candidate and he convinced me to have it done. I had tried all the other treatments except Botox. Nothing worked. He did the left side first and I had immediate success. The next month he did the right side. I woke up in severe pain and had problems with oxygenation. My lung did not totally reinflate. I had a small pneumothorax. I did go home and recovered. I had severe compensatory sweating on my back, below my breasts, stomach, and legs to the point that I could leave puddles if I stood still. I also had severe pain between my shoulder blades. It feels like a knife going through my back. When I asked the surgeon about the excessive sweating and the pain, he told me I always sweated in those places and kept giving me pain meds for the pain. He never tried to find out why I was having such severe pain. Three years ago I finally was diagnosed with neuropathy around my chest and back due to ETS. Some days the neuropathy is so bad that I can go to work. I have trouble breathing deep due to this. I do not go out very often do to the excessive sweating. I stay to my self. I try to buy clothes that don't show how wet I am. Which is very hard to find. It is hard to make friends. My children have hyperhidrosis each to a different degree. My youngest son has it like me and he wanted to have ETS. I told him I would not wish My worst enemy to have ETS. I told him if I could go back in time, I would never have gotten ETS done. The side effects are worse then having hyperhidrosis

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    • Mayra on #5475

      Hi,
      I'm in the Chicago burbs and flew to San Antonio for my surgery. It was successful. Absolutely dry hands. I opted to only stop hand sweat and the nerve cut was at the T2 level.
      I have ‘compensatory' sweat I will currently consider mild. I say that because I'm told it could worsen over time. It's really only been 2mos post surgery. When exercising I sweat in the trunk from the bra down. There have been times where I “drip” sweat. My feet initially somewhat temporarily dry post surgery, do sweat, but not as bad. My armpits get drippy. Again, exercise. Obviously, I like to train and workout. My lifestyle has been that of a recreational bodybuilder. If this is you, KNOW that your HR will drop. They won't get specific, but your TRAINING INTENSITY will stagnate. I wasn't told that cutting T2 acts similar as a beta blocker… or that most athletes opt for T3 regardless of sweat return possibility as long as they can maintain higher aerobic capacity. So while I'm amazed by my DRY hands, I'm a little ticked about my aerobic capacity being squashed. If you're not athletic, go for it. Cutting T2, done by a great doctor will end your embarrassment. But if you're athletic like me, you will live in fear that you'll become a fatty or you'll never be ripped or vascular again. I'm struggling to get to 130bpm with a Polar chest strap… My max HR is set 183. My resting HR is around 60, that's fine, but training intensity is compromised. NOT cool. I just messaged my surgeon. I need answers. And yes, I regret not researching deeper. It's hard to find answers if you don't know what to ask. I did tell them I was athletic and if the surgery affected my abilities I'd pass, but was assured that would all be fine. I hope it is.

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    • Jim on #5586

      I had desperately wanted the ETS procedure back in 2010. But after reading of the side effects from the members of this forum, I am totally disappointed. Anyone here who knows a more effective way of treating hyperhidrosis without any side effects? Also considering Botox injections, but it is a little pricey. It's not that I cannot afford, but not just my priority.

      Reply
    • kay on #5591

      I've had hyperhidrosis my entire life. My mother has it and passed it onto me. Both my hands and feet sweat and my underarms started excessively sweating as I got older (around puberty)Both my mother and I have had ETS, her in 2003. I had my ETS surgery in 2015. I was 15 at the time. My hands and armpits were completely sweat free after surgery. I do have compensatory sweating, usually my back and legs, sometimes my face as well. But, my compensatory sweating is not constant like my hands and pits used to be. I usually only sweat in these places when very hot, working out etc. These past few months I have been noticing my armpit sweating starting to come back. It does not seem to be as bad, I used to literally have sweat dripping down my chest. Hopefully it doesn't worsen. My mom has compensatory sweating as well, for her it is on her stomach, but again it is not constant. I went into surgery knowing all of these risks and I personally do not regret my decision at all. If you have hyperhidrosis you are going to sweat somewhere! My hands being sweatfree is what I hoped for. ETS is not going to help feet sweating which I feel some people don't realize, but I do believe there is a surgery specifically for that. So many people regret having ETS because of compensatory sweating and like I said before, YOU ARE GOING TO SWEAT SOMEWHERE.

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    • Arjun on #5675

      Hi all,

      I'm sharing my ETS surgery experience. I got it done recently and by no means am I endorsing the surgery. But, for somebody who's been though the trauma of having their palms and feet sweat all the time, my story might give a confidence booster to make a decision on their condition.

      I am an Indian and currently 23 years of age. I've been having this condition of hyperhidrosis from my childhood, both on my palms and feet; I've not experienced abnormal sweating on any other parts of my body. However, it has been a great matter of concern for a long long time. I cannot explain in words the mental trauma i've been through to hide my sweaty palms while shaking hands, touching objects, driving my bike/car, etc.

      It all started at the age of 5 or 6, when my dad and mom noticed that my palms were sweating more than normal. In the hindsight, no one in my family had this condition; so, the source of my sweating problem being genetics is ruled out. My mom observed an article on sweating in a weekly publication and tried a formula – to dip my palms and feet in a tub containing hot water with cut brinjal (eggplant) pieces (i'm not joking BTW!)…..obviously, it didn't work! 🙁

      I just ignored the condition and so did my parents; alternatively, by the time i was 8, my mom asked a famous homeopathic doctor a solution for my condition; he prescribed certain medications, but despite trying the medicines for more than 2 years, I couldn't observe any changes in the degree of planto-palmar sweating. So, I stopped homeopathy as well.

      In the meantime, my dad & mom never thought that this condition of mine was too serious to seek any further medical assistance and thought that the sweating was purely an effect of adolescence. But, i was consistently worried and kept suffering within myself about my condition. The most embarrassing moments were those in my school when i used to use a handkerchief over the book while writing, so as to avoid the sweat from wetting the pages. My teachers used to ask me what was wrong with me; my friends used to make fun of my condition. But, with me being brilliant enough in my studies commanded a great respect from my fellow students and maintained a good relation with everybody; but still at times, my friends and even my family members used to ask me about my condition, which i can say is by far the most intolerable agony that only people with the sweat condition can understand!

      Moving on – By the time I turned 15, the sweaty palm condition had worsened and had started affecting my lifestyle more than ever before; much socializing started after my schooling and I found it extremely difficult coping up with the norms of friendship – shaking hands/ high fives! I used to come up with alternatives by giving fist pumps / hugging people instead of coming in contact through palms. I approached a dermatologist to find a solution; he prescribed topical applications (aluminium chloride solution) and said that the condition was pretty usual in tropical countries like India. But, my condition was not such that a topical application would resolve the issue. I continued with this for almost 3 years till I was 18. But, I realized that using topical applications without a complete impact was just a waste of money and effort.

      I stopped using it and spoke with my dermatologist again ( I was 20 by then). He suggested me to try the method of iontophoresis. I purchased a device for around 6000 INR and started the procedure for 30 mins both on palms and feet – totaling 1 hour. I used to add baking soda to the water which supposedly blocks the pores better I tried this for about a year, but as time went by, I started experiencing a tingling and itching sensation on my palms. Though iontophoresis had some positive impact on my degree of sweating, the end result was nowhere close to dry palms and feet. With soles being thicker, iontophoresis treatment doesn't work that well for moderate to high levels of sweating; even for the palms, I couldn't observe a great improvement for the severe level of sweating condition that I had.

      I have had nightmares and difficult times with my love life, due to sweaty palms. My girlfriend felt awful about my sweating condition and i really don't blame her for feeling that way; But, I was determined that either I'll live with this condition or will get it rectified once and for all, when the time is right.

      I just stopped all forms of treatment when i turned 21. I stayed put till I decided to get the surgery done, as I had exhausted all options. I just sat and weighed my risks and possible rewards. I googled out the possible options for surgery. I found one and decided to get it done. I booked the date and fixed the appointment. The toughest part was convincing my parents. They were very anxious and reluctant in the beginning; but somehow i explained them my trauma wholeheartedly and persuaded them to agree for the surgery. They gave in to my requests and with much hesitation agreed to support me on my decision.

      Finally, the day of my surgery arrived. I was advised to come on the day with 8 hours of prior fasting; I reached the hospital where i was admitted as day-care patient. I was prepped for the surgery by putting me on glucose drips. I was taken to the operation theater after 3 hours. I was administered general anesthesia and that's the last thing i remember. I woke up to a dry mouth and moderate pain in my chest area. I was partially breathless for a while and the chest area appeared stiff, due to the numbing effect of the anesthesia. The chest tube was left on both sides of my chest . It was removed after 2.5 hours of observation post surgery. In total, 5 holes were made of which 3 were stitched with dissolvable sutures and the other 2 (left open with chest tubes) were closed with general sutures.

      My hand were bone dry and feet were not sweating more than 20% of my initial levels; I was discharged the same day. I could walk, sleep, talk, eat and breathe normally within 24 hours after the surgery with bearable pain. compensatory sweating was evenly observed at the following parts: trunk, groin, lower legs and back. None of the parts were sweating enough to wet the clothing that I wore, even at 37 deg. The sweating was moderate and tolerable.

      All in all, it's been a good experience after the surgery. I am more confident and happy than ever before!

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      • Participant
        Bhaskar on #7011

        Hi Arjun,

        My daughter's condition is very similar to what you have described before ETS.
        Could you pl. share the details of the surgeon /hospital where you got the ETS procedure done.
        Also, how you are doing now.

        Bhaskar

        Reply
    • Angela on #5909

      Hello all, my daughter had ETS for hand and feet sweating at an early age of 9 yo. I researched and felt very confident with a surgeon at CHOP in Philadelphia. It seemed to have worked well the first 1-2 years but since this it is back and bothersome to her. She is now 13 and keeps pestering to have the surgery again but I just can't imagine putting her through that again. She never complained of compensatory sweating but I fear things could be worse if we went this route again. I also fear reading about increased risk of dementia with long use of anticholinergics. She take Glycopyrrolate 1 daily to help control her hyperhydrosis. PLEASE help me figure out what I can help her with..I have an appt next week with the doctor again to see about any updates in treatment. Does anyone know if insurance covers those Iontophoresis machines and do they really help?
      Angela

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    • Patient X on #6094

      I had several ETS surgeries now. For anyone who doesn't want to read my story, keep this thought in mind: Don't Risk It.

      My first ETS surgery was back in 2001, where I had nerves clamped. I had severe axillary hyperhidrosis and it was totally cured. I had 2 years of zero problems, until my symptoms came rushing back in college. It's important to note, clamping nerves, even though those clamps can be removed, may still cause permanent damage.

      After my ETS surgery in 2007, I remember walking out into the sun, and feeling an odd burning sensation. It was something I hadn't felt before, usually the sun causes only warmth at first, not an immediate burning. Furthermore, the sweating didn't seem to stop, if anything, it was worse. It took several years for me to fully grasp my new reality: hyperhidrosis was now a full body experience. My buttocks, my axilla, my chest and back, all destined to sweat profusely every day when experiencing even mild heat. Sitting on plastic or leather seats would permanently cause distress, as it would always cause problems. Over years, the problem became worse and worse. I have left veritable puddles of sweat on seats, in agony as I hope others don't look down. I also have a strange case of iatrogenic rosacea as well – my face is more red than it ever was in my teens. I have to avoid all spicey foods, direct sunlight without sunscreen, excessive exercise, and numerous other agitating factors to avoid flushing flare-ups. I have persistent tremors in my hands with fine motor movements, and they become overt tremors at rest with caffeine use. My body reacts entirely different due to my now altered autonomic system; when someone places a hand on my shoulder, taps my hand, any unexpected physical contact and my body forces me to jump, as if I'm in a constant fight or flight mode. If I can predict I will be touched, I have to tense up first to avoid flinching, making any physical contact awkward. Emotional states of any kind outside of being calm cause symptom spikes, worsen the sweating, shaking, flushing, making it difficult to go exert myself in life, to live productively.

      I have now lived with all that for over a decade, with symptoms gradually getting worse. I've thought about this surgery more than I would like to admit. It was probably my greatest mistake in life, however I blame the medical field for not informing me fully of the risks. “Compensatory sweating and Horner's syndrome” (paraphrasing) was the only thing I remember being mentioned on the forms I signed, not “Insane, absurd compensatory sweating, to the point of dehydration, with tremors, and rosacea.”

      What won't be explained to you by a surgeon, and not necessarily by any medical professional, is that there are more nerve cells in the autonomic nervous system (sympathetic + parasympathetic nervous system) than there are in the central nervous system (somatic nervous system + brain). You should know about these systems before you embark into a potential living hell. Peripheral nerves can regrow, in fact, it seems they are bound to when cut and clamped. This is different than the central nervous system, e.g. if you kill brain cells, they don't regenerate. These peripheral nerves regrow and can form new connections and pathways, causing different sweating patterns, often over the course of years. Nerve signals flow much like water through a river, so when a nerve is cut or clamped, those signals are redirected with more intensity to other nerves, causing the compensatory sweating. With time, new nerve connections form, and the condition can become far, far worse, depending on what new nerve pathways are created – a process that is impossible to predict.

      In the case of any ETS patient, the best case they should ever hope for is mild compensatory sweating, logically speaking. In other words you will trade a problem, with another problem, hoping it's not quite as bad. This is because of the nature of nerve regrowth, you are destined to have some sort of problem even if the procedure worked 100% for the first few years. Keep in mind the other side of the spectrum; you could have a drooping eyelid on one side of your face, until an inevitable dirt nap. You could feel invariably reclusive, because drinking several gallons of water every day to maintain your hydration status is unenjoyable. You could feel the need to avoid any and all sunlight, active forms of vitamin D? Who needs it. Rosacea demands you live in caves. Or, you could appear as though you have Parkinson's disease thanks to a cup of coffee.

      Good luck if you do the procedure, but it seems highly unethical to me. Easily sidesteps the Hippocratic oath.

      Reply
    • Lukas on #6095

      I've had the hyperhidrosis surgical treatment that worked initially, but after a year or so and still up until now… My body sweats more than it ever did before. I don't even have to be doing anything hard (movement, activities, even building a desk)… My legs sweat, back sweats just hanging out with a friend in an environment that's slightly warm, but not hott. It's beyond embarrassing. I take this medication called Glycoperrolate (sorry for the spelling)… And it hardly works more than a placebo. I don't know who or what to turn to.

      Reply
    • Subhadwip on #7354

      Hi arjun……
      Same problem.
      Could you share the details surgery(surgeon?hospital?place?cost?).
      Your condition of this days???
      Please… Please…please…

      Reply
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