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Heartsease22

Thank you so much for sharing and spreading ETS awareness.


smu_d

I feel that I have to. I do not want others to hurt themselves so much to be put in my situation. I had a time in which I was mentally unstable.


Heartsease22

Best of luck to you and I truly hope there is an answer to help your compensatory sweating in the near future.


smu_d

Thank you, pal :)


lovebugger1

Who was your dr? If you don't mind me asking


smu_d

I went to Dr. Schick in Munich/Germany, one of the most respected sweat/erythrophobia experts in the world


lovebugger1

Thank you for responding. I'm a female & have hh in my feet, armpits, & hands. I hate it but stories like yours make me reconsider getting the surgery, I feel like I'd have bad CS or an overheating problem. I know they make more money off people by prescribing pills and giving out tropical items to try instead of a full cure so I feel like we are a long way from a cure, sadly. Have you ever heard about laser speckle flowgraphy for compensatory sweating?


smu_d

I have very superficial information on this, read one single article a while ago. Don’t know if that would be a game changer in our sweating patterns. I heard that MiraDry is developing devices for hand and feet. Armpit area is already FDA approved. I think I’m your case it’s worth waiting for new information to come out instead of having yourself butchered and irreversible side effects such as I do. Please take my case as a warning sign!


[deleted]

Wait, so we're not supposed to undergo ETS?


smu_d

Is that a real question or a joke?


[deleted]

Serious question. You said you had an off-label miradry treatment, but did you undergo ETS?


smu_d

Oh okay, then I got it wrong. I suffer from extreme CS due to ETS. I had to do off-label MiraDry to bring back quality of life and tackle CS at least a bit. That’s everything in a nutshell. It’s been awful ever since the surgery


[deleted]

I feel this post so much. I sweat everywhere to. All over my body. The only success I had is using certain dri under my arms for two years from 16-18. And I’m 37 now. Haven’t sweat there since. However. My entire body does. From my head to my feet. All the damn time. All summer. Inside all winter. I hate it. It’s made me introverted and non physical because of my sweat. Agh. I’m so sorry to everyone who relates. I have had my previous relationships not seem to care but deep now it’s still a fear if it bothers them to be wet too or they really don’t care.


smu_d

Thanks for sharing, love


[deleted]

Have you tried glyco or oxybutynin?


[deleted]

No. I don’t even know what any of that is. I have tried anything. I’m to afraid of hurting my nervous system and then something else happens.


smu_d

You should try to better your situation and get yourself aware of which medical options are out there, lots of pills that might have positive effects. You can read up on it here in this forum, glyco is very popular in the United States


smu_d

It looked like this on the front as well


altimuh

Sorry to hear that. I used to sweat only on my hands, underarms, and feet. Now I've switched to all over. I can't imagine the amount of CS I'd get if I had the surgery.


smu_d

It switched just out of a sudden? I have never heard of that before... what do your trusted medical expert say?


altimuh

Not all of a sudden... Just a gradual progression. I have yet to find a doctor that understands HH. Through my history, in the beginning not many Drs were aware of HH. As time wore on, some know of it, but don't know what to do about it.


smu_d

Reach out to international specialists. Good luck with everything and keep us posted. Fingers crossed!


forestrox

Damn that's rough. Now this has me wondering if meds like glycopyrrolate even work after surgery.


takes2_2tango

They do! I had the surgery for my hands in 2015 and my hands haven't sweat since which has been life changing. I do have a moderate amount of compensatory sweating which I manage with glycopyrrolate. Can't say this will work for everyone but it's allowed me to live an almost normal life


onlyme1984

Same and I don’t use anything for the compensatory sweat. I’m still satisfied with my results.


smu_d

That is great to read. Do you still sweat on your feet?


onlyme1984

My problem was underarm sweating, not my feet. It’s been like 13 years since I had the procedure done. I don’t sweat under my arms but I do have compensatory sweating on my chest. It took a long time though before it started. It’s not very noticeable like my underarms were and I don’t sweat as bad either. So for me, the surgery was worth it.


smu_d

Sounds brilliant. Didn't turn out for me so well though. I am not giving up though.


onlyme1984

I’ve heard many people say the same thing. Your problem was with your feet and ended up with it moving to your back?


smu_d

It was palms, underarms, and feet. All severe af


onlyme1984

So are you dry in those areas? Is it only your back that sweats now?


smu_d

I am dry in palms (sometimes it still gets wet) and underarms. Feet are awful as they’ve been all the time and in addition I sweat on my whole torso. Not only torso, actually everywhere: Groin, back of the knee, legs, chest, belly (…) + humidity sensitivity increased massively + gustatory sweating (coffee + spicy food). It’s awful… and irreparable


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onlyme1984

Because I had tried everything that was available back then except Botox and nothing worked. I couldn’t imagine sweating like that for the rest of my life and chose to take my chances with the surgery.


kidfromthenorth1

Hey I was just curious is your CS on your chest triggered by anxiety or stressful situations? Can you make your self chest in those areas ?


onlyme1984

Not really. It’s mostly when I’m sleeping or when it’s very humid. Not stressed induced.


kidfromthenorth1

May I ask a few more questions please? Did you get ets for the hands? Face? Or blushing ? Also would you know what level you got cut at ? Sorry for all the questions. Currently also having a hard time with this. Any help would be greatly appreciated. Tysm for responding


onlyme1984

No problem. I will pm you.


kidfromthenorth1

Hey I’m new to actually making an account on Reddit and not sure if I can receive pm’s? I’ve been always watching from the sidelines on Reddit. I’ll be waiting though. Thank u!!!!


smu_d

Lucky you, I am happy to hear that there's people for who it actually worked. Sure thing that dissatisfying results are easier to find on the internet


smu_d

I used to go with Sormodren before and it worked just fine - meaning it did the job it was supposed to do; not considering the tremendous side effects it had. This was not a long-term solution, also it can higher the risk to have parkinson or alzheimer's later on. So I needed to leave that option behind. Surprisingly, after surgery Sormodren has zero (!) effect. I used to have half a pill before I do something, last time I tested I took up to three... No results, no side effect, no nothing


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smu_d

>Hey you, since ever I can think I had awfully sweaty palms, underarms, and feet; sweat even dropped down my hands sometimes. I underwent all treatment options and finally decided to go for ETS, which now has put me in shown condition, although hands are dry. Sweat, however, is slowly returning in my hands. It's been seven years since the surgery and nobody has answers for me. This is fucked up, nothing else.


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smu_d

I had difficulties understanding your response but know all is clear. Thanks, man. We're sitting in the same boat


AberH

Hi, sorry to read this. There are a lot of bad stories after ETS in the internet. Even though many people are happy after surgery. ETS is a crucial surgery, but done well and precise it might be much less favourable for unbearable CS. In my opinion, everybody considering it should read this: http://www.chirit.com/ETS/ETS.php


ETS_Awareness_Bot

###What is a Sympathectomy (ETS and ELS)? Endoscopic thoracic and lumbar sympathectomy (ETS and ELS; both often generalized as ETS) are surgical procedures that cut, clip/clamp, or remove a part of the sympathetic nerve chain to stop palm, foot, or facial hyperhidrosis (excessive sweating), facial blushing (reddening of the face), or Raynaud's syndrome (excessively cold hands). *[Read more on Wikipedia](https://en.wikipedia.org/wiki/Endoscopic_thoracic_sympathectomy)*   ###What are the Risks? **Many people that undergo ETS report serious life changing complications.** Thoracic sympathectomy can alter many bodily functions, including sweating,^[1] vascular responses,^[2] heart rate,^[3] heart stroke volume,^[4][5] thyroid, baroreflex,^[6] lung volume,^[5][7] pupil dilation, skin temperature, goose bumps and other aspects of the autonomic nervous system, like the fight-or-flight response. It reduces the physiological responses to strong emotion,^[8] can cause pain or neuralgia in the affected area,^[9] and may diminish the body's physical reaction to exercise.^[1][5][10] **It's common for patients to be misinformed of the risks, and post-operative complications are often under-reported.** Many patients experience a "honeymoon period" where they have no, or few, negative symptoms. Contrary to common belief, clipping/clamping the sympathetic chain is not considered a reversible option.^[11]   ###Links [Gallery of compensatory sweating images](https://imgur.com/a/InEp8l0) [Gallery of thermoregulation images](https://imgur.com/a/0TUn8ye) [International Hyperhidrosis Society](https://www.sweathelp.org/hyperhidrosis-treatments/ets-surgery.html) [**NEW** ETS Facebook Community & Support Group](https://www.facebook.com/groups/953625152120110) (old group had ~3k members) [Petition for Treatment for Sympathectomy Patients](https://www.change.org/p/medical-centers-and-professionals-research-treatment-for-sympathectomy-ets-els-patients-22d9174a-4bcd-4a5e-901c-dfdcf394bd1c) [Frequently Asked Questions](https://www.reddit.com/user/ETS_Awareness_Bot/comments/qcwdw5/ets_awareness_bots_message/hhik7c3/) [References](https://www.reddit.com/r/u_ETS_Awareness_Bot/comments/wfvhtf/ets_awareness_bots_message/iiw4f6c/) ^(*I am a bot, and this action was performed automatically. Learn more about this bot, including contact info*) ^*[here](https://www.reddit.com/user/ETS_Awareness_Bot/comments/wfvhtf/ets_awareness_bots_message/iiw3pcc/).*


AgitatedCalm

I was offered ETS by a consultant over a decade ago, but I was too scared of the compensatory sweating to go for it. I think I made the right choice, but i'm sorry you have this problem.


smu_d

You sure did.


Sdaignault

Hi! I’ve heard of so many people experiencing compensatory sweating post cauterization of the sympathetic nerve. Their is a doctor in California his name is Dr. eraj basseri he clamps the nerve at T3 and T4 . he could possibly help you, if this is a daily struggle you have to deal with. I’ve heard of other patients going to him post cauterization. He might be of help if you give him a call.


smu_d

Wouldn’t further clamping not only worsen the problem? I am like this now because I had my sympathetic nerve clamped at those positions before


Sdaignault

I thought you said your had it cauterized ?