I had ets surgery...

[kandyjet]

Thanks guys for the feedbacks, you really risked your life for ppl like us who has decided to under go this ETS. i have terrible head, face and neck sweating. now i had enough embarrassment in life. cant wait any longer. ill do the ETS asap.

please keep us updated about your post ETS conditions.

 

[anonymoushh]

Wannabedry:

Hi!
I had ETS surgery about the same amount of years ago you did. I was a sophomore in high school and have been dealing with hyperhidrosis my entire life. I remember how hard it was to do art work in KINDERGARTEN because my hands were so sweaty and would soke my paper, utensils, and clothing. And I was only in kindergarten. As I grew older it got worse and it was the worst in my hands, feet, and underarms. I went into depression and required anxiety from all of the embarrassment and uncomfortable situations. Not only were my hands and feet sweaty, they would drip with sweat no matter what the temperature was, and they would usually get puffy, and purple and it was hard to do anything. I decided with my parents to have the ETS surgery because of my severe hyperhidrosis. My hands have been dry ever since and I rarely sweat in my arm pits. I still have to wear deoderant. My feet got worse however and they sweat perfusiley but I would prefer foot sweat to hand sweat. It worked for my hands which is great but I suffer from compensatory and gustatory sweating. I sweat a lot in my legs, butt, and stomach and a lot from my back. Never really sweated from those places before ETS. The gustatory sweating is super annoying. It is sweating when you eat any food or drink beverages such as lemonade and citrusy drinks. I even sweat from candy like Jolly Ranchers. I also get goosebumps at the same time, and sweat mostly from my neck and face. Hot weather is a nightmare. I try to stay as cool as possible when doing things. I would do the ETS all over again if I had to and am happy with it because my hands are dry. It changed my life and I can touch things, and greet people and hold hands with my husband. I want to mention I take glycopyrrolate for the sweating and it has helped so much. Only been on it for not even a year but it helps so much. Just worried I will eventually get immune to it. I have also heard that over the years your nerves can re-grow and make you start sweating again. I hope this is not true. It's going on year 11/12 now since ETS surgery. My hands get clammy at times when it is hot/humid out or im nervous but it is rare and it isn't noticeable at all. Just to me of course cause I hate the feeling. My feet are a nightmare but I do my best to keep them dry as long as possible during the day and wear open toed shoes. ETS is a very weird surgery to have cause it makes you feel like a diff person. Let me know how you are doing.

Hey. Not sure if you check your account any more as I realize this post is almost a year old. I think our experiences are pretty similar. I experienced HH around 1st grade. I got ETS when I was a teenager. Our CS might be slightly different.

I looked at your other post too. How's it going? Does Robinul work for you?

If you're interested in keeping in touch, please let me know. I think it would be helpful to have someone to talk to who has experiences similar to me.

 

[anonymoushh]

I'll share some of my CS experience:

I'm 28. I had ETS when I was 14. So, I've lived half of my life with generalized CS and half of my life with sweaty hands, feet, and pits. It's kind of hard for me to remember life before ETS, but I think it was an improvement over what I had before. After I had ETS, it was amazing to me that I could play guitar without the fretboard getting damp, play video games without the controller getting wet, and hold a girls hand.

Yes, there are side effects. I think my CS has always been about the same. I've learned to control it better/ hide it over the years though. I remember the first summer after I had ETS my back was just insanely sweaty when I played basketball outside. That's still the same. But I've somewhat learned how to deal with that. Yesterday, I went to an outdoor festival. It was sunny, high 70s, not a cloud in the sky. I stayed outside for about 3 hours...and visually I don't think anyone could tell how much I was sweating. I wore an undershrit...and kinda wiped some of my sweat away when no one was looking. I wore black nike shorts, and shoes...and no one could really tell how bad my butt and feet were sweating. That being said, I don't think I was sweating THAT bad. More than the average person, but not drenched.

Anways, I'm interested in trying robinul. I'll probably try that soon. I tried some other drug (I don't think it was robinul) a while ago and that didn't do anything for me. I'm trying to more open about my situation. I literally have openly talked about it with one person other than my parents.

 

[alwayswet]

I did ETS and have CS bad. The Robinul Forte (max dosage) helps some but you'll have a dry mouth that could increase tooth decay. It also made me sleepy so I took it at night (next morning dry mouth big time). I don't think there is a 100 percent cure short of sweat gland removal which I think would be very bad. You need to sweat to keep cool, and I am beginning to think that everything we try will have the opposite affect. I am seriously considering going to deodorant only. I have tried Odoban to reduce CS, but it seems the sweat just moves elsewhere and in greater quantities.

I may start taking Robinul again as it's summer and I am running out of black shirts and patience. There has to be something that people with HH are blessed with that others aren't (think autism and numbers). Maybe our skin will stay nice and soft well into our 90's. Maybe the government will look for volunteers to permanently relocate to Antarctica for a paycheck. Maybe we are the beginning of a new species of eel people.

 

[ayjaycee]

Hello,

I'm a 30yold male,athletic and in good health. One problem i always had was Hyperhidrosis ever since my teens. It had affected my carreer,my love life,relationship with others...everything It was ALWAYS on my mind. I suffered mostly from sweating in my hands and feet,but the hand part was the most suffering part as your hands is your first contact with meeting someone or showing affection...signing papers etc....

I had tried everything...from useless creams and ointments for the hands...to electro shocks...the oral pills....I did the botox injections....you name it i did it. The only one that actually worked for me was the Botox injections. I did it in 2010 and doctor told me it would last minimum 6months to a year...WRONG. It actually lasted only 2 months before i started sweating again. But it was the best 2months of my life! But paying 600$ for a 2month cure gets too expensive. And as far as people being scared it hurts...its not that bad. First needles hurt a bit but after its like nothing. Nothing to be worried about,they numb you nerves when they do that anyways. On a side note i have to say that i smoked marijuana. And i did not smoke it to get high or act stupid...marijuana was the only remedy helping me with my anxiety and would make my hands dry, it was weird. One thing for sure...anxiety=my hands pouring in sweat. I had tried anxiety pills to see if it would help...but pills seem to make my sweating worse. The marijuana helped alot for my hand sweat. But i didnt want to do that all my life and i cant go to work high on marijuana.

So here I am...30yold and completely fed up with my problem. I became having depression,severe anxiety because of this hand sweat and became anti-social as i would fear or avoid people or situations where i have to shake hands....or even worse hold the hands or touch the person you love.

Thanks to the internet i started to read alot about this hyperhydrosis. I did my research...read the goods and the bads about the final step...ETS Surgery. I was really scared about the bad reputation that surgery had for some people...but at same time i guess the people for who it worked wouldnt come on forums and said it worked as people mostly post stuff when sometmies is wrong not good....

So i wen to see my dermatologist and told im i was fed up with this and i wanted to consult a Thoracic surgeon for ets surgery. I consulted the surgeon...he made me feel confident about the surgery...but every surgery can be risky lets not be fooled. For your information i live in Montreal,Canada and hyperhydrosis is covered by our health care system so i didnt have to pay nothing for the surgery as I read in the USA it can be quite an expensive surgery. So 2 months later here i am in the operating room getting ready to be cut. They are gonna insert a straw size camera under both my arm pits and another straw size to insert tiny instruments. This was done under full anesthesia. Before the surgery I asked him if it was only gonna be T4 nerve he was gonna cut and he told me T3 and T4 for hands hyperhydrosis.

I woke up 1hour later with my hands and feet fully dry. It was so weird. I felt a big pain im my chest as your lungs get deflated to get access to the sweating nerves near your spine.For some odd reason the doctor told me he cut the T3-T4...and T5!! thanks for letting me know doc!!

After surgery i felt Like if a 500 pound gorilla was sitting on my chest. The pain medicine helped with the pain. My back muscle hurt too. But by next day i was able to leave hospital and walk again. Taking deep breaths ad coughing or sneezing was hurting me alot. But after a week the pain went away.

One day 3 of my surgery I got scared because my right hand was staring to sweat again like crazy...but odd enough it became dry completely the next day.

Now the side effects that i feel from this....Alot of you out there suffered compensatory sweating after the surgery...and i have to say I'm one of those now...let me explain something quick...the T3-T4 nerves act for hand-feet sweat mostly...the T5 acts for sweat for under arms,your face and upper body above nipples. So basically right now i have ZERO sweat in my WHOLE arms and hands. I basically have zero sweat above my nipples and have no more goose bumps in my arms or above my nipples,you can actually see a perfect line acrosse my nipples....i have goosebumps in legs and torso but zero goosebumps above my nipple line or arms...its weird.

I do have severy compensatory sweating coming from my back and my torso,groins and legs...but the sweat is gone from my hands and my feet have improved so much. I can tolerate this compensatory sweating compare to the nightmare I had with my hands. I have to say that heat is the worst enemy. And when i get in nervous situations il sweat from those body parts. But if im in a room where its nice and cool or outside with normal breeze i feel great with zero sweat. Its just something you get used to...I do not wear light clothing because of this...so I adjust. Il wear a tank top under my shirts and Il manage. I got this surgey done on July19th 2012 so here in Montreal we get like 30degrees and humidity so it was a good test to see how my body would react.

Il admit the first week of surgery...I just felt weird...like your body is adjusting to those nerves being cut. I starting having regrets about this surgery and was crying at night about what i done to myself. The first few days of compensatory sweat makes you want to cry as I was not used to sweat from those body parts but only my damn hands and feet. But here I am a month later and i have to say that Im happy with ETS surgery...I feel more confident and it just feels great to shake hands and not be worry about the nasty sweats on your hands....just holding my girlfriends hand is just amazing. And as far as sex life there is nothing wrong down there after surgery

Just be aware that everybody is different and react different to surgery...the biggest con I can say is the compensatory sweat...but like i said you manage to live with it and it alot better than nightmare i had with my hand sweat.

I hope my experience have helped you some out there that arent too sure about doing this as i was very afraid to do it as well. People dont have a clue whats it like to be a HH sufferer...My hand feet sweat affected me in my everyday life...i washed my hands like 50x a day...worried 24/7 who would come shake my hand or avoid social situations...I became bitter...less smiley...anxious...depressed... I just want to be the person that i know i can be and enjoy life without having to worry about this Hyperhydrosis...and so far I have to say I'm happy how it changed my life....I know alot of you have had bad experiences with ETS surgery but there are somewhat good stories out there and i want it to share it. Sorry for my english grammar as English is not my first language.

I wish you all a good day and hope my story have helped some of you out there.

Roby.

Holy sh$t this sounds like me. I'm going to go through this all and get back to you. I think I can help you.

 

[JR25]

Hi. I also made the terrible mistake of having different sympathectomies at a young age, and have regretted the decisions ever since the 'honeymoon period' ended and the side-effects told hold.
My advice to anyone would be to avoid sympathectomy, but that's just based on very bad personal experiences.

 

[driping jon]

hi karl.i am uk.did u have it done on nhs.i have been reading lots about it.i am 59yo and mine seams to be getting worse .wet heat all the time lol.

 

[estry]

Hi
First sorry for my english language i don’t use it In my daily lige so it’s not so good.
For many years I suffered from really bad facial hyperhidrosis and embarrassing facial blushing. I tried everything to deal with it but nothing could help me. So two years ago I decided to have ETS surgery. Next day after surgery I woke up with perfectly dry face but my back, butt, and feet were completely wet. In next two months after surgery I started sweating on my stomach and chest, on my thighs and under my arms. My CS is terrible I sweat constantly through the year and through the day. It’s extremely embarrassing when you waiting for bus, temperature is below zero and you feel sweat pouring from you and your clothes are drenched. I have huge sweat stains on my shirt, on my pants and socks. I feel totally out of place, I must change my clothes 3-5 times during the day! I knew about Compensatory Hyperhidrosis before surgery but I thought that so severe CS is more likely in men or people who are obese. I read a lot of articles and research and found that about 1%-4% patients after ETS experience CS through the year, and during simple daily activities or when they do nothing and the temperature is quite cool. Unfortunately I am in this 1%.
Does anyone else on this forum experience severe Compensatory Hyperhidrosis after ETS surgery? Maybe someone has an idea how to deal with it or have experience with CS?
Thank you in advance for help

 

[estry]

Hi
First sorry for my english language i don’t use it In my daily lige so it’s not so good.
For many years I suffered from really bad facial hyperhidrosis and embarrassing facial blushing. I tried everything to deal with it but nothing could help me. So two years ago I decided to have ETS surgery. Next day after surgery I woke up with perfectly dry face but my back, butt, and feet were completely wet. In next two months after surgery I started sweating on my stomach and chest, on my thighs and under my arms. My CS is terrible I sweat constantly through the year and through the day. It’s extremely embarrassing when you waiting for bus, temperature is below zero and you feel sweat pouring from you and your clothes are drenched. I have huge sweat stains on my shirt, on my pants and socks. I feel totally out of place, I must change my clothes 3-5 times during the day! I knew about Compensatory Hyperhidrosis before surgery but I thought that so severe CS is more likely in men or people who are obese. I read a lot of articles and research and found that about 1%-4% patients after ETS experience CS through the year, and during simple daily activities or when they do nothing and the temperature is quite cool. Unfortunately I am in this 1%.
Does anyone else on this forum experience severe Compensatory Hyperhidrosis after ETS surgery? Maybe someone has an idea how to deal with it or have experience with CS?
Thank you in advance for help

 

[driping jon]

hi.sad to read your true story.i was thinking about it.im sure it would have gone the same way for me.something was telling me that.hope you cope ok

 

[Tomtation]

Hello Robyrob82
I am trying to find where and who does ETS surgery in Montreal, can you tell me where you had your surgery and how it is going 3-4 years later.
Thanks
Tomtation

 

[Sprawling]

In my opinion it's best that you avoid having ETS surgery. If you do a search on this group you WILL find the answer to your question. It just may take a little work and time reading on your part.

 

[ragj19555]

I had ETS in 2001 for facial sweating. For 8 years it went well. Mild compensatory sweating that I could handle in the UK weather. Then over the course of 2 years (09-10) everything changed. I now have CS in temps as low as 12C all over my body. Not just back but all the way down my legs and even the inside of my forearms. I had a "re-do" in 2014 but instead of cutting the T2 again the surgeon went and cut T1 which has made it even worse.

If you asked me to rate ETS for facial sweating, after 8 years I would have given it 9/10 but only 2/10 two years later. My advice would be 1) Never have it for anything other than facial sweating as this is hard to treat using other methods. 2) Just because you're fine after 5 years don't think it will stay like that.

 

[JR25]

Agree completely ragi19555. I had ETS and a lumbar sympathectomy between '99-2001, worst decisions of my life. The benefits just are not worth the side-effects in my experience.

 

[SweatyCanuck]

ragi19555 did anything else change during that time? My CS has been absolutely horrendous from about a month after the surgery onwards... I'm now at about 2 yrs post surgery and it basically dictates my life. I really wish I never had ETS done. Your story of it getting worse 8 years later absolutely horrifies me. I can't imagine mine being worse - I wouldn't be able to work or go in public period during spring/summer. Do you find your weight affects it all? I'm a little overweight now (I was always very fit and at the gym constantly, then the CS kind of made me avoid it and now I'm 15 lbs heavier than I should be) and wonder if cutting down would help it at all or if its hopeless like everything else I've tried.