Seriously considering ETS...

[Phoenix_Elite]

Hey guys, I've only posted a few times in this forum so I'll summarize my situation:

I'm 15 years old and I suffer from palmar, plantar and some axillary hyperhidrosis. It is literarily ruining my life and I am sick of it. Both the plantar and axillary hyperhidrosis are tolerable, but sweating excessively by the hands is living hell. I've come to the conclussion that it's not only social situations, but what for me constitute everyday activities, ranging from writing on a sheet of paper to practicing the piano. I've tried to explain to my mother how intolerable this condition is, but I'm pretty sure she's never understood. Still, she's willing to do anything to get rid of it because she knows how crucial this condition is for me, and that's more than I can ask for. As you all know, and unlike most people think, hyperhidrosis is not something easily dealt with or controlled. I've tried topical solutions for a long time and iontophoresis (Drionic H/F) on various occasions, neither with results.

I have thought about ETS as a possible solution for a long time, but stories of compensatory sweating and things that can go wrong have creeped me out. But after more than five years of trying to control my hyperhidrosis (and I know some of you have tried to deal with it for longer than that- I salute you) and letting it turn my life into a mediocre existence (sounds emo, I know, but I mean it with all honesty), I have had more than enough. If nothing else will work for me, ETS will be the way to go. Firstly, in my opinion palmar hyperhidrosis is the worst kind there is, and sweating elsewhere wouldn't really pose a problem, so I'm not worried about that. Secondly, I'd much rather take the risks than spend every day of my life wallowing in self-pity (and justly so!). And of course, it's not like they're going to cut open my back as some sort of ritual and crudely remove glands: it's surgery, so it's quite safe.

I'm not afraid of surgery itself either, as I had my appendix removed last September and know it's not that bad (of course, it helps to have family members spoiling you and being in a comfy, private room :wink: ). The main thing, I think, is that I live in Puerto Rico and I'm almost sure that no surgeon here can perform ETS surgery. That means I'll have to travel to the United States. My mother has no problem with that, as long as I do my research. And I, in turn, obviously have no problem with that. This will mean plenty of Internet surfing (mainly any and all hyperhidrosis forums I can find, and the life-saving Google). This is the main reason for this topic, so any information and/or suggestions are welcome. In the meantime, my doctor's trying to find "natural alternatives" to control this condition. [Sigh]

If there is anyone in this forum who had ETS I would like to know your experience henceforth (although those are probably the dry guys laughing at us and saying "suckers!"). Was it worth it? As a side story, I went to a dermatologist who supposedly specializes in hyperhidrosis. Turned out we knew more or less the same things. Again, this condition for me is intolerable. I know most, if not all of you are going through something similar. If you help me out here and tell me anything you know about any good surgeons or hospitals, anything at all about ETS it will be greatly appreciated. Then, if (or more likely, when) I go through with the surgery, I can give you guys feedback, and tell you if it's worth it.

I am aware that ETS is not a "cure" for hyperhidrosis, but it's supposed to stop (or redirect) my hands from sweating, and that's the only thing I really care about. But I also know that if my hands stop sweating altogether it can and probably will make my life significantly better. Thanks for listening to my rant. Replies will be more than appreciated.

 

[blong]

You are incredibly well spoken for being 15. You remind me a lot of me at your age. The anger and frustration; but you have matured much faster mentally as is obvious by your post.

I have the same type of HH as you, palms, feet, some underarms. Im now 19. Some thoughts:

1. DO NOT THROW AWAY YOUR LIFE BY GETTING ETS. If you think your life is bad now it could be a whole lot worse. So many people with serious HH (like you and me) find that the compensatory sweating is the worst for them. Take a breath, consider how much you do actually have and how quickly that can be lost. And trust the people who have had ETS, sweating on your back and stomach to the point where is is dripping all over you and you have to change shirts 5 times a day is a LOT worse than sweating on your palms. A lot of post ETS patients commit suicide afterwards if that tells you anything, its awful.

2. Stay on topical solutions. Make sure you are getting the 20% aluminum chloride and not less. I know for me it seems like it doesnt do much and it has lost effectiveness over the years (ive been using it for 8 years now) but it does help and give you that extra bit of confidence.

3. Drionic is a piece of crap. Iontophoresis does help once you find the treatment schedule that is right for you. You need to get either the idromed or the Fisher units. Insurance might be able to compensate you for it.

4. If you still dont have the desired success then consider botox injections. They sound horrendous but they are not that bad. Hopefully insurance will cover you. When I get them in my palms it stops my sweating for about 4 months.

5. Take hope in developing solutions in the future. Sure life isnt great right now. Im in college right now and it is a bummer to have HH but i am still making it.

Best of luck

-Ben

 

[jimmyjimmy]

don't get ets. It's could destroy your life. Please see my thread called "cured my HH" for a solution.

Thanks

 

[larold]

Elite,

I am about to get tomatos thrown at me, but I did get Micro-ETS and it has made my life so much better. I am not saying to go get it because I had a good experience, because I know and you know there have been so many bad experiences with it. I was in the same boat as you...had all three areas drenched throughout the day...each area was constantly wet. I tried everything besides botox, because i knew i would not keep doing that procedure the rest of my life.

Many have good luck with the oral medications, you may try something like that...I had OK luck with drionic, it was splotchy though...not everything would stay dry....and my treatment times were ridiculously long to get bad results.

Anyways....I do have some CS, not nearly as bad as what i had before though...I barely do sweat, but when doing a lot of physical activity I do sweat on my back, chest, and legs. I would take this over the other regions anyday though...another reason this CS doesn't bother me is that it actually stops sweating when i cool down a little...unlike my hands, armpits, and feet which it didnt matter if it was 0 degrees outside, they would continue to sweat. I went to Dr. Neilson in San Antonio, Texas. He cut t2-4 (because armpits). He was really surprised when i stated my feet no longer sweat much at all, they are dry 95% of the time.

Remember there are good experiences (i was lucky...nearly did this procedure many times but was scared off many times due to horror stories...i was lucky), but there are so many bad ones too...it really is a scary decision...don't jump into anything you are not 100% sure on how you will react to the worst outcome. Good luck, and if you have any questions let me know.

 

[HH]

blong is spot on, don't do it. I think you are too young for the procedure as well being only 15-your body is still changing. There is still quite a few options for you. I think the first one is to get a good machine-idromed 4 or something-drionic is crap. Stick to the treatments because it takes time. Maybe a combination of idromed and advert will reduce the sweating a lot.
Explore ALL the options before ETS.

 

[teandtoast]

I should think most surgeons wouldnt operate on you anyway being so young but then again in the US I expect you could find someone

I thought ETS was just for armpits ? how does it work for palmar ?

Still though I think youre pretty young to be thinking about it already and should look at other things are (I know there arent many things but Im sure at your age there are still options you possibly havent looked into or tried enough)

Im looking at Vaser liposuction treatment for my armpits but is after 5yrs of having this and thinking about

 

[Phoenix_Elite]

Thanks for the replies. I didn't expect so many so fast. I will respond to each of you individually, but you are more than welcome to read the whole post.

blong- 1. DO NOT THROW AWAY YOUR LIFE BY GETTING ETS. If you think your life is bad now it could be a whole lot worse. So many people with serious HH (like you and me) find that the compensatory sweating is the worst for them. Take a breath, consider how much you do actually have and how quickly that can be lost. And trust the people who have had ETS, sweating on your back and stomach to the point where is is dripping all over you and you have to change shirts 5 times a day is a LOT worse than sweating on your palms. A lot of post ETS patients commit suicide afterwards if that tells you anything, its awful.

I suppose you're right... I would like to speak with people who had ETS firsthand though, and see what they think. However, I don't know of anyone. Do you know anyone who's had ETS? If so, could you tell me what they thought of the procedure? Still, I guess I'll exhaust all my other options before getting surgery. It's just so frustrating!.

blong- 2. Stay on topical solutions. Make sure you are getting the 20% aluminum chloride and not less. I know for me it seems like it doesnt do much and it has lost effectiveness over the years (ive been using it for 8 years now) but it does help and give you that extra bit of confidence.

I've used topical solutions for over a year, with a bit over 20% aluminum chloride, and for me, it's not that it doesn't do much. It doesn't do anything at all. I know this because when I sweat on my palms, I also sweat on my armpits and feet. When I'm not sweating, and I think that perhaps it might finally be having some effect, I don't sweat in the rest of my body. That happens occasionally: unfortunately it doesn't last long. Topical solutions just don't cut it for me. I'll stay on them, but I doubt it'll have any more of an effect now than it had a year ago.

blong- 3. Drionic is a piece of crap. Iontophoresis does help once you find the treatment schedule that is right for you. You need to get either the idromed or the Fisher units. Insurance might be able to compensate you for it.

Are you quite sure of that? Because I've heard that iontophoresis only works on approximately 70% of patients. Maybe I'm just among the other 30%. In any case, I've pretty much decided not to trust iontophoresis. The first time I tried it, I gave myself hour long daily treatments for two weeks. I think I went about two days sweating less than usual. The second time I tried it, it was the same thing. Nothing (or barely anything). The third time, I gave myself half-hour long daily treatments for two weeks, but using more potency. Nothing.

I used up about 200 dollars for the machine and additional accesories. If you sum up the time "wasted", I've spent about 35 hours with the treatment. At the end of the third time I tried, the back of my fingers (somewhat below the nails) had minor injuries that looked like old burn marks because of the surface of "electrified" well. I'm not very eager to try out another machine. Only if nothing else works. In the meantime, I'll try to find something that is not very costly and not so damned time consuming.

blong-4. If you still dont have the desired success then consider botox injections. They sound horrendous but they are not that bad. Hopefully insurance will cover you. When I get them in my palms it stops my sweating for about 4 months.

That sounds like one of the best options. If I can find them, I'll get anticholinergics (pills). If I don't get results out of them or if the side effects are too severe, I'll move on to Botox. My mom's going to check whether insurance covers it. We can't afford to use 3000 dollars a year (for the sake of exaggerating) so that my palms don't sweat. Could you more or less explain the process to me? In any case, I'll look it up.

Do you think it's possible that I've used the topical solution for so much time that my body has "gotten used" to it and rejected its effects, or is that to wild an idea to be plausible? I can't exactly recall, but aplying aluminum chloride daily might have had minor results at the beginning. Just something out of the blue though.

blong- 5. Take hope in developing solutions in the future. Sure life isnt great right now. Im in college right now and it is a bummer to have HH but i am still making it.

Thanks. Although it's been impossible to ignore this condition, I think it's the best thing I can do while I find a solution. Judging by the replies to the original post, it seems I should leave ETS as a last resort. As long as I have it and it bothers me so much, I'm not going to stop looking for solutions.

jimmyjimmy- don't get ets. It's could destroy your life. Please see my thread called "cured my HH" for a solution.

I read the thread and it sounds like a good combo. First, however, I'm going to try and see if I can find Avert and use it alone to see whether I get any results. If I don't, I'll try to combine it with Botox injections.

Pinker- Have you tried Robinul tablets (also known as Avert)? These work extremely well on people, and I can imagine, because I use it in iontophoresis. If the solution form is not available (I don't know if it is outside the UK), then you could try crushing robinul tablets to get the same effect. It could be worth a try. My hands are dry with glycopyrrolate solution but without it I would be a mess. I have severe hand/foot sweating. The tablets would be just as good. I've never tried them because they're unlicensed in the Uk.

Yeah, I think that's precisely what I'm going to try next. It would be the tablets though, because I don't plan to continue treating my hands with iontophoresis. I think they'll be hard to find though. The hyperhidrosis specialist didn't even tell me about the pills when she gave me possible solutions; I found out about them later, surfing through the web. I hope they work for me, but the side effects, I fear, may be too severe. And unluckily my body is very prone to side effects (when a med says it may cause sleepiness and I take it in the morning, I am pretty much shut down during the rest of the day). I think it's worth a try though.

Pinker- At the end of the day it's your call, but you should read all the information available then read it all again. Remember it's an irreversable procedure. With your age though even if you desperatly needed it I would consider waiting until you're 18 or later. Who knows if it could have impacts on growth and development in adolescents?

You bring up a good point. As I stated previously in this post, I'm going to move ETS back to last resort. Perhaps Botox or Avert will do the trick...

larold- am about to get tomatos thrown at me, but I did get Micro-ETS and it has made my life so much better. I am not saying to go get it because I had a good experience, because I know and you know there have been so many bad experiences with it. I was in the same boat as you...had all three areas drenched throughout the day...each area was constantly wet. I tried everything besides botox, because i knew i would not keep doing that procedure the rest of my life.

I'm glad it worked out for you. Quick questions, does the fact that you wrote "micro" before ETS mean anything? Is it in some way a different type of procedure? What did your surgeon tell you the risks could be?

larold- Many have good luck with the oral medications, you may try something like that...I had OK luck with drionic, it was splotchy though...not everything would stay dry....and my treatment times were ridiculously long to get bad results.

Anyways....I do have some CS, not nearly as bad as what i had before though...I barely do sweat, but when doing a lot of physical activity I do sweat on my back, chest, and legs. I would take this over the other regions anyday though...another reason this CS doesn't bother me is that it actually stops sweating when i cool down a little...unlike my hands, armpits, and feet which it didnt matter if it was 0 degrees outside, they would continue to sweat. I went to Dr. Neilson in San Antonio, Texas. He cut t2-4 (because armpits). He was really surprised when i stated my feet no longer sweat much at all, they are dry 95% of the time.

The oral medications is what I'll be going for next. Your situation appears to have improved significantly. I'm glad you stick around this forum to help those of us who haven't been as succesful. Was your doctor really surprised by the outcome? If so, you were really quite lucky.

larold- Remember there are good experiences (i was lucky...nearly did this procedure many times but was scared off many times due to horror stories...i was lucky), but there are so many bad ones too...it really is a scary decision...don't jump into anything you are not 100% sure on how you will react to the worst outcome. Good luck, and if you have any questions let me know.

Thanks for replying. I'll be hanging around this forum to announce significant changes or just to rant about the frustration (doesn't really relieve any stress, but reminds me of the fact that I'm not alone). In the meantime, however, I plan to come back to this specific thread to see whether I get any replies. If you can answer the few questions I asked you about the surgery, I would really appreciate it. :wink:

HH- blong is spot on, don't do it. I think you are too young for the procedure as well being only 15-your body is still changing. There is still quite a few options for you. I think the first one is to get a good machine-idromed 4 or something-drionic is crap. Stick to the treatments because it takes time. Maybe a combination of idromed and advert will reduce the sweating a lot. Explore ALL the options before ETS.

I trust the users in this forum. In my opinion, there's no better place to get advice on hyperhidrosis than from those who suffer it. In all honesty, I don't think other people can really understand it. Perhaps that's why there's little research on this condition. Since you all pretty much suggested the same thing, I'll try everything else I can think of before going for ETS. This includes pills, Botox injections and the Idromed or Fisher iontophoresis units.

teandtoast- I should think most surgeons wouldnt operate on you anyway being so young but then again in the US I expect you could find someone

I thought ETS was just for armpits ? how does it work for palmar?

Yeah, I could probably find someone willing to perform the surgery. As for how it works, I think it's pretty much the same procedure, but dealing with other glands. But surgery is too complex for me. I wouldn't even think about becoming a surgeon. The mere thought of having the fate of someone's life on my hands is very overwhelming.

teandtoast- Still though I think youre pretty young to be thinking about it already and should look at other things are (I know there arent many things but Im sure at your age there are still options you possibly havent looked into or tried enough)

Im looking at Vaser liposuction treatment for my armpits but is after 5yrs of having this and thinking about

Yes, I still haven't tried oral solutions or Botox injections. I could also try another iontophoresis machine, but I'm not psyched about buying another time consuming, painful unit which probably won't work. Some even say hypnosis can do the trick. Sounds fishy though...

Out of curiosity, how much does axillary hyperhidrosis bother you? How severe is it?

General:

Because most of your suggestions have been the same, ETS goes back to the spot of last resort. Meanwhile I'll try oral solutions and Botox injections. If you have any idea where I can find Avert and/or how the whole Botox procedure goes, please reply. Thanks for the responses. Since I have school and my time zone differs from yours I will probably reply at what appear to be strange times. However, I'll check this thread daily for a while and occasionally create another one in this forum.

 

[teandtoast]

teandtoast-

Im looking at Vaser liposuction treatment for my armpits but is after 5yrs of having this and thinking about

Yes, I still haven't tried oral solutions or Botox injections. I could also try another iontophoresis machine, but I'm not psyched about buying another time consuming, painful unit which probably won't work. Some even say hypnosis can do the trick. Sounds fishy though...

Out of curiosity, how much does axillary hyperhidrosis bother you? How severe is it ?

It bothers me because Im sweaty and sticky in my underarms almost constantly ...even when its winter and freezing cold...its not a very nice feeling.
Also I seem to have over active Apocrine glands so I begin to smell not very nice quite quickly if I sweat a for while (compared to normal people) which is horrible for me....removing these via surgery should eliminate this problem.
Overall its effected my confidence serverly over the years and bothers me alot.

 

[teandtoast]

I should think most surgeons wouldnt operate on you anyway being so young but then again in the US I expect you could find someone

I thought ETS was just for armpits ? how does it work for palmar ?

Still though I think youre pretty young to be thinking about it already and should look at other things are (I know there arent many things but Im sure at your age there are still options you possibly havent looked into or tried enough)

Im looking at Vaser liposuction treatment for my armpits but is after 5yrs of having this and thinking about

ETS can be 'used' for hands, feet (not recommended), armpits, head.. In fact it would be especially silly to have it done for the underarms because there's the other surgeries with no side effects.

For your underarms if they're really really bad then the liposuction would be ok. I think the only consideration is the cost of it all (unless they can do it on the NHS).

Agh right I never knew that about ETS n could be used for hands n that...interesting
I suffer a bit from me feet but nothing bothers me that much to need to have anything done

When your talking about having liposuction if youve got bad underarms are you talking in general or to me ? as I obviously know about all that if your directing that at me and if you see that thread Ive started about Vaser you will see Ive spoken about I was about to get lipo but now with Vaser come up Im now looking at having that done.
And not to worried about the cost tbh

 

[Phoenix_Elite]

Argh, insurance doesn't cover Botox injections. That would literarily be $3000 a year. Scratch that, Botox is no longer an option. I still have to check out the Avert/Robinul tablets. I still don't know where I can find them though. That's Google's cue I think. :wink:

 

[claire861]

hey, i know you said you wanted to talk to people that have had the surgery, so i'm more than willing to talk to you. I think i responded to a post of someone elses that you responded to so you will probably see what i wrote there... but anyway. yes, i just got the surgery, and it was definately a last resort. because of the potential side effects and risks, my mother definately made it a last resort. you DEFINATELY should try everything else first, but if it doesn't work, strongly consider surgery. I am so happy withy my results. My hands were really intolerable. My feet still sweat a little and my back does too when i'm hot, but i could care less since i now have dry hands! i know there are a lot of horror stories, but if you get the right surgeon, i think things will really go well. The surgeon i had had done this surgery over 300 times and had only one bad case (a girl that had facial sweating and he preformed the surgery on her and her face no longer sweats but her butt sweats so badly that when she sitts down she leaves a puddle behind her. she is still happy she got the surgery though because she would rather have that then her face sweating) he no longer preforms the surgery for facial sweating. only for hands. for the surgery for hands, he saids sometimes people can come out with their feet not sweating too, but sometimes not. it's just lucky if you do. but the day before i was suppossed to get the surgery i was tellling my mother sometimes when i was hot my legs and back would sweat, so she called the surgeon, who took it very seriously and called me immediately to talk about the severity and frequency of the sweating. He didn't want the surgery to make the compulsatory sweating worse, and he almost called off the surgeon untill he talked to my psychiatrist and they determined it was the best thing to have it. I'm sorry if i'm just going on and on lol, but i'm just trying to make the point that if you get the right surgeon, they really care about you and will make sure you are the right canidate for the surgery and you will be okay and happy. My surgeon was really devestated by the case with the one girl he had, that he couldn't have anything like that on his conscience ever again and took so many precautions to make sure everything went well. So i really, really encourage you to look into it. Good luck with everything. i know exactly how you feel. i am more then willing to offer you any help you need.

 

[Phoenix_Elite]

Thanks a lot, claire861! Don't worry, I like long posts. :wink:

I'm glad it went well for you. Right now I'm trying Robinul tablets, but it's still too early to confirm whether it works or not. I have noticed a significant reduction in overall perspiration, but I'm still not ready to jump for joy. ETS is my last resort, but if you don't mind me asking, where did you get the surgery? And who performed it? I could keep the information for future reference.

Thanks again for your reply!

 

[claire861]

i'm glad the tablets seem to be working! that would be really great! i got the surgery in san francisco, california and my surgeron was dr. szarnicki. I know it is really expensive, but my insurance covered it. I actually had to wait a year to get the surgery, so we could switch to a plan that would cover it, and then at the end of this year we will switch back again. The surgery though was not really a painful process at all. i was let out a few hours after the surgery and for the next 2 days my throat and chest were soar, but it wasn't a big deal at all. and the incisions are TINY! when i took off the bandages, i was shocked! there are six incisions (three per side) and they are each not even half an inch, so you don't have to worry about major scarring! well i'll love to hear how everything goes, so keep me updated!