Considering ETS? Please Read

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Samuel	Help	#101	[url]	[-]
Member Posts: 2 08/18/08 04:12 PM	Like most of you guys here I have suffered from HH as long as I can remember, and the excessive sweating is unfortunately in my palms. Needless to say that I have tried everything, now I am planning of doing the surgery and I am really fantasizing about it, and I know someone who had it and highly recommend it. The problem to me is beyond the social issues (shaking people hands….you know what I mean), I am a good guitar player and I am planning and dreaming of going pro but HH is being a pain in the ass ( If I knew a more slanging expression I wont hesitate using it; SERIOUSLY). HH makes me change guitar strings all the time and spending all my money, never daring to play someone's else guitar and especially borrowing mine… strings slipping out of my fingers, loosing control while playing and relatively self-confidence (and that the sad part)… but the bigger problem is that I suffer from ulceration in my palms (due to the acid in the sweat that destroys the skin) six or seven times a year and that's a living hell especially to a person who really needs his fingers 365 days a year. I have reached a point in my life where I can never imagine myself doing anything but playing guitar on stage and trust me it's a good thing to know what you want in life. Back to reality, in this part of my life I am extremely self-destructive and you can't imagine my sufferance watching my dreams slipping away from me and there's nothing I can do about it especially now after what have you told about ETS, you have crushed my last hope and I really hate you for that (not really :P) and I don't know why I'm making jokes instead of smashing my head against the wall. I just wish there is a drug in this part of the world who can fix me and I don't care if it will cause me cancer after 10 years (I REALLY DONT). I am confused if I should take my chances and do the surgery….Please guide me people…Tell me what to do and don't advise me with the long term stuff, I really hate it.
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jinnjucz110		#102	[url]	[-]
Member Posts: 844 08/18/08 04:17 PM	hey Samuel, my best advise is STAY AWAY FROM THIS BARBARIC SURGERY! if you notice on this forum there are way far more trying to get out of this than they are try to get in THANK JIN
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Dripping Silver		#103	[url]	[-]
Member Posts: 4668 08/18/08 09:31 PM Administrator	Hello Samuel, Tell me what to do and don't advise me with the long term stuff, I really hate it. I honestly don't know why you're asking if you don't want to know about the 'long term stuff'. Would you really expect the members here to edit their answers and leave out the long term side effects? You can get that kind of testimonials off any surgeon's website but that's not what you're going to see here. You're being given the opportunity to learn what possibly could happen and actually did happen to our members. Of course we can't tell you what to do; you're the only one who will know whether or not ETS is right for you. I understand your frustration of having to replace the guitar strings constantly but an even sadder scenario that can happen and did happen to several others is they lost the ability to ENJOYmusic any longer. ETS has robbed them of their passion. Another possiblity is overly dry hands. You would think that would be a good thing, but it is not. Your hands could end up still cracking and bleeding plus a load of other unwanted side effects along with it. You haven't said what alternative remedies you have tried. We have an excellent list posted and developed by Pinker, one of our member, of the various things you can try. I encourage you to spend some time researching further. Carole
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1slip75		#104	[url]	[-]
Member Posts: 301 08/19/08 08:33 AM	Samuel, Carole touched on some things I wanted to say to you. There have been many before you come here with hand sweating difficulties, the inability to shake others hands do to embarrassment. However this is key. When you have ETS, the hand area is definitely gonna stop sweating. Even if you have surgery at the T2 or T3 your hands will be dry, very dry. I don't play guitar but have many musically talented friends who have recorded cd's, played locally and nationally, so I am familiar with what the strings feel like. It is kinda a weird feeling to just slide them up and down, almost like chalk squeeking on the chalkboard. And many who play the guitar use a pic because it hurts or bothers their fingers. I believe most who play with their hands will tell you it took time to build up tough fingers to play without a pic, so having ETS is going to cause your hands to change. They will be sensitive, as in I can grab a piece of paper and if my hands slip a bit because they are so dry it gives me this horrible sensation. It simply is sensitive to touch. Things that vibrate are the same to me, I cannot hold them because the feeling my hands get. So it is in my opinion based on what I know about ETS, and the little I know about guitars you will be in worse shape if you have the surgery. Because like Carole said they will be dry, crack and be very sensitive to touch, especially paper like surfaces including cardboard. There are a lot of stories on here talking about how after ETS people hands have become so dry and sensitive that they had to change jobs or give up hobbies. When I read you story I was reminded of these other people and I hate to see you in the same predicament. We need to sweat even in our hands. I know profuse sweating sucks but have ETS and your definition of profuse can be changed. I thought I sweated a lot prior to surgery, now I sweat more then before. And imagine that,, you playing your music on stage and your WHOLE body being drenched in sweat.. What a crowd pleaser. You don't want this man, please don't buy in to the Miracle claims that the surgeons websites flood you with. Yes your hands will stop sweating and it will be a new nightmare for you. Having lived with HH, you have the ability to cope, or try new remedies as they present themselves in our world, but not surgery. You cannot go back, the reversal thing is a myth at best. I have read some say they feel as if they reverted back, but myself who was clamped and had them removed haven't seen significant difference, only slight and periodic sweating on hands and shoulders. Another thing carole mentioned is the mental numbness many of us feel after ETS. I am a creative person and I still feel that way, but I don't get excited about things, everything is just blahh. That would not carry well into the music industry. So please do not change your body functions by destroying a nerve that controls and regulates organs in your body from head to toe. Charlie
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Dripping Silver		#105	[url]	[-]
Member Posts: 4668 08/19/08 10:11 AM Administrator	The guitar strings are akin to the nerve system of the body. It's the strings that are the life of the instrument. Cut two strings on your guitar and play some songs with it that way. Wouldn't be the same, right? Yet that is what you will be asking your body to do.....to try to function at it's fullest without a full set of strings/nerves.
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csmess		#106	[url]	[-]
Member Posts: 1195 08/19/08 01:44 PM Administrator	Samuel, Sorry to hear about your hyperhidrosis and sorry for bursting your bubble about this supposed miracle cure. However, from my point of view, you are very lucky to have found this forum so that at least you know first hand what you are risking. I sure wish I had had that advantage when I was considering surgery. Anyway, I hope you take our warnings seriously because the probability that you will end up with a set of conditions worse than you hope to cure is very significant. The fact that some people are happy with their outcome and are encouraging you to have the surgery does not change the odds. The problem to me is beyond the social issues (shaking people hands….you know what I mean), I am a good guitar player and I am planning and dreaming of going pro but HH is being a pain in the ass ( If I knew a more slanging expression I wont hesitate using it; SERIOUSLY). HH makes me change guitar strings all the time and spending all my money, never daring to play someone's else guitar and especially borrowing mine… strings slipping out of my fingers, loosing control while playing and relatively self-confidence (and that the sad part)… As a fellow guitar player, I would advise you to not assume that a sympathectomy will be beneficial to your playing. ETS has been detrimental to my guitar playing. ETS "cures" excessive sweating on the palms by destroying the ability to perspire over a large region of the body. This leaves the skin bone dry. Although my finger-style and classical playing hasn't suffered much, playing with a flat pick is a nightmare. I can't hold onto the pick. My hands are so dry that it constantly slips from my fingers. I have to use that "Gorilla Snot" stuff to use a flat pick and then my fingers are covered with that crap when I do something requiring finger picking. Another way having ETS can screw up your musical dreams is the "compensatory sweating". ETS should be called "hyperhidrosis displacement surgery" because it succeeds only in moving the problem to other areas. So, even though you might like dry hands for your playing, imagine performing on stage with huge sweat stains on your shirt and groin! I don't have to imagine that...it has happened to me. I have to wear black from head-to-toe during a performance. And, I have try and keep my concentration up while a waterfall of sweat streams down my torso...soaking my clothes and the back of my guitar. The take home message: Your assumption that ETS will help you fulfill your dreams of being a professional musician is a false one. By having ETS, you may very well make playing and performing even more troublesome. I am confused if I should take my chances and do the surgery….Please guide me people Most surgeons will tell you there is only a very small chance you will experience severe side effects. However, evidence published in major medical journals indicates that rate of severe side effects is much higher than is typically disclosed to prospecitive ETS patients. Here is a link to a professional review of the medical literature on ETS surgery. There are many studies linked from our forum. One recent study found that 35% of ETS patients had to change clothing throughout the day to cope with the CS. Another one found that 50% said the side effects had lowered their quality of life. Needless to say, I strongly urge you to forego surgery and find other ways to cope. Whether you believe the rosy statistics from the surgeons or the more ominous ones found in the literature, the chance that you will make life much, much more difficult for yourself is very real. Good luck. Last Edited By: csmess 08/19/08 03:42 PM. Edited 5 times.
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Aubrey		#107	[url]	[-]
Member Posts: 548 08/20/08 01:10 PM Administrator	Samuel, When you say you've tried everything, I hope you really did. There is a long list of alternative therapies and many of them have helped people such as Secure wipes (a little girl got relief with them, her father posted about it) and Iontophoresis (takes time and some patience, but can definitely work) and medications. If your heart is set on surgery then consider clamping at the beginning of the warm season, that way you can get clamps removed if you have regrets and the nerves have a chance to heal some, it is no guarantee but better than cutting which gives virtually no hope of nerves healing. If I could tell you what to do I'd tell you to consider your life with severe side effects including sweating through your clothes onstage since you are focused on performing.... If you aren't interested in hearing the risks long term then I don't see much good you will get from this forum because the idea is to have people be careful and skeptical. I guess that is all I can say besides best of luck in your decision.
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surfsider1		#108	[url]	[-]
Member Posts: 86 08/20/08 01:52 PM	Hey samuel, like you i have Palmar HH and I've been considering surgery for some time but from everything i've learned this operation is the most controversial thing next to say a lobotomy. In my head i thought ETS could help me because i would rather sweat almost anywhere than my hands but think if you got compensatory sweating on your crotch or butt how uncomfortable would that be. Yes i've heard many successful stories but i've also heard a lot of devestating ones. There's no way to predict exactly how your body will respond to ETS and that is the biggest risk. I would encourage you to wait awhile till more treatments develop and to try everything else which is what i'm doing. Look in to getting Hydrosal gel and put it on at night. Then try iontophoresis which is what I'm waiting to try. If that doesn't help get a prescription for Robinul which you could always stop taking if it causes you side effects and as a last resort before surgery try botox. If your hands don't drip sweat then you'll probably have some success with these alternative treatments but if there dripping almost constantly which would be the most severe i would consider surgery but only after trying everything else. It's your life and your decision just remember it's hard to go back when you've decided on ETS as even the clamping provides a short term reversal period that may not be successful.
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Samuel		#109	[url]	[-]
Member Posts: 2 08/20/08 03:20 PM	I've been doing a research in the last few days and you got me convinced of staying away from the surgery, it seems like the chance of true success of this surgery is much lower than I thought. I will definitely take your advice and try absolutely all the alternatives I can find and it seems that everyone has to find what might work for him. I checked out the list you mentioned and I found out that certain allergies might contribute to HH so I'm doing a RAST test tomorrow and that Robinul might be a success but it seems that I can't find it anywhere and I wonder if there is another medication that can replace Robinul. In the worst case and after trying everything I might be thinking of clamping due to the fact that it may be reversed. In the end I want to thank you guys ( Jin, Carole, 1slip75, csmess, Aubrey, sursider1) and wish you the best of luck in the future and I believe that helping people not to make the mistakes you did is worth respect. I will be in touch if anything worked for me 10x PS the idea of the resemblance between playing guitar with missing strings and making your body functioning normally with missing nerves is really interesting and hit me in the heart
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Dripping Silver		#110	[url]	[-]
Member Posts: 4668 08/20/08 09:16 PM Administrator	thinking of clamping due to the fact that it may be reversed Please be cautious and do not fall into that trap. It is not a FACT that it can be reversed. Spend a little time reading in our Reversal Section and get to know what our members who had the clamps removed are going through. There may be some benefit having the clamps removed but the side effects are not automatically reversed. If you can't get Robinul, any of the anticholinergics on the list can be tried. Ditropan, for example, is similar. Thank you for letting us know you will be looking into alternative remedies first. Good decision! Even if you finally decide to go through with ETS, you at least will be somewhat prepared in case the surgery does not turn out as promised. Carole
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1slip75		#111	[url]	[-]
Member Posts: 301 08/21/08 09:57 AM	Yeah good point Carole. I keep reading others talk about clamping and its reversible. I have even read some clamping stories where one lady said she believe she returned to 90% pre ETS condition. Not sure of the criteria one uses to judge that but thats the biggest reversal stat I have seen. I had clamps put in, and nine months later had them out, and have not had a reduction in CS or GS, my heart rate is the same, my fatigue levels are up and down but still more then before ETS. And all the other things like light sensitivity, numbness and pain in arm areas, mental dullness and breathing difficulties are still there. All other known side-effects would take a doctors review, which I have no money for or know a doctor who knows anything about ETS. Thats why ETS is such bullshit. I go back and read The American Institutes for Hyperhidrosis's info page and it is laughable. Anyone who reads it would be like wow what a great procedure, look at all these benefits and no side-effects. And all these people calling it a miracle and saying it is reversible so what do you have to lose??? It's sickening. How can these places advertise in that way, with lies and deception. I tell ya Samuel ETS is a complete nightmare. Not only will your surgeon deny any problem that occurs and its relation to ETS, but you cannot find a qualified doctor that even understands or heard of ETS, you are told to take more and more medications then you ever did to combat the new conditions you have, as well as deal with the daily frustration of asking why and how can I get better. What some fucking shit. And Carole I was jealous of your analogy, I knew it made perfect sense. Cutting two strings and playing the instrument thinking it could be the same, never. Same with our bodies. A great comparison. Anyway Samuel hope you stay away from ETS forever, as it is past time for you to work on living with your HH. I see that so clearly now. I was in good shape, I felt healthy and was in a good routine. ETS disrupted all of that and when I found out that all the things I was experiencing were also experienced by a large number of ETS patients including those who had my very same surgeon, I was devastated. And now over a year and a half later after my original surgery it is still the predominant thought in my mind everyday. How could I have had this operation without seeing the damage it has done to others? I simply did not find this info, now I see it a lot of places, even some of my own posts and reviews of Leon Egozi come up during google searches. So that is the only things I am happy about, the chance for others to see the dangers before they sign up for a surgery that just is not safe but dangerous to your livlihood. Charlie
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Dripping Silver		#112	[url]	[-]
Member Posts: 4668 08/22/08 12:37 AM Administrator	Just for the heck of it, Charlie, I went back and looked at Egozi's American Institute website again. I hate, hate, hate going to the surgeons' websites and seeing all the lying, all the deceitful tactics they use. Egozi says ETS is done by "Sophisticated Techniques" that are reversible. I'm sure you and plenty of others have called that office enough times that they know what the true picture is. The title "Doctor" should be stripped away from them. A doctor heals; ETS surgeons destroy. Maybe Des. for destroyer would be better than Dr. Oh, now you've got me started! Anyway, back to Samuel....it was easy to see he loves and respects his guitar. That same love and respect should be applied to one's body, perhaps even more so. Most of us who sweat and blush excessively hate our bodies. We think that if we could only solve that problem, our lives would be better than good, it would be great! The surgeons know to reinforce our feelings of self loathing by calling hyperhidrosis a crippling disease that causes us to suffer. They sucker a lot of people in that way. We all have to learn to get over our embarrassment of sweat and blushing, whether from HH or CS after ETS. It's not like we're dirty....we're probably even more conscious about hygiene than a lot of people. We have to get past our obsessions over a bit of salty water leaking out from wherever Carole Last Edited By: Dripping Silver 08/22/08 01:00 AM. Edited 1 time.
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WetBoy		#113	[url]	[-]
Member Posts: 89 08/22/08 08:50 PM	The only thing ETS surgery did for me was move the problem from one part of my body to another and it made it worse. Dr. Nielson did the T2, T3 tango on me 7 years ago. Latley I've been feeling a little light headed and dizzy and I looked on this message board and found other ETS patience have had the same feelings. Kind of spacey... I can deal with that but the side effects for me (extreme CS and GS) are not worth it. I wish I could be like I was before. I still live life to the fullest, just quite a bit more moist than before. My advice would be not to have ETS surgery... you'll regret it. Don't believe the bullshit testimonials, 1 and 6 regret having this surgery... roll the dice... spin the barrell... Don't do it. Just buy some Right Guard... you'll be much better off. Last Edited By: WetBoy 01/21/09 06:27 PM. Edited 2 times.
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Dripping Silver		#114	[url]	[-]
Member Posts: 4668 08/22/08 09:25 PM Administrator	Hi WetBoy and welcome! Thanks for adding your voice as another who advises anyone who is considering ETS to look to other options. I'm happy you've at least still be able to lead a full life. That's good to hear. Carole
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knowell	In the same boat..	#115	[url]	[-]
Member Posts: 15 01/18/09 03:16 AM	Good day.. I noticed the last entry was dated late last year. I hope my reply will be read somehow.. I am 38 years old Asian working here in Dubai. I also believe that I have hyperhidrosis 'cause even the weather is cold or just finished taking a bath, my palms and feet sweat for unknown reason. This extends for several hours to almost the entire day. I started noticing this "strange" perspiration when I started working abroad (Middle East), and I have no idea whether the climate in this region aggravated my condition. I reach the situation where I hated myself and felt that this condition is unbearable because of extreme embarrassment. I exhausted myself in finding a cure in order to avoid embarrassment brought by this condition. Late last year, I found out that ETS surgery is being done here in Dubai. I immediately contacted the doctor and had appointment with him. I told him the remedies I used before and he confirmed that I have. He said that I will be cured but he mentioned also that he will cut only the nerve that is responsible for palm 'cause sweating of feet is connected with palm and it will be cured as well. For that, I mentioned to my manager my interest in undergoing ETS surgery, but he discouraged me mentioning that it will only be a disappointment and advised me just to go on leave to decide on that. Because of this, I asked my relatives and some doctors from our hometown about the surgery (via e-correspondence). From numbers of inquiry, three local doctors agreed they perform the surgery. Two of them gave me an invitation as soon I reach my hometown, but the last doctor advised me not to pursue the surgery, mentioning clearly that "the result is unimaginable". I'm not shocked on what he replied, but I really got confused; because I know for myself that I will do surgery only as a last resort. I tried (almost) all the alternatives and now I'm deciding to go on surgery because I believe there is no other way except this. But very soon, one of those doctors who perform the same advised me the other way. Strange enough, I started researching and looked for some facts about hyperhidrosis and ETS surgery.. Now, I will settle on taking alternative step and not surgery. I'd like to thank the contributors of Wikipedia (or the web administrator itself) for shedding information about the subject. From there also I found this web forum (thanks and we have now e-technology). I would like to thank Carole and Charlie and the rest of contributors here in this forum. Without their relevant explanations, I will not be enlightened. I admire Charlie in particular for his straightforward and valiant expose. I share my empathy to all of you; we are all in the same boat, struggling and adjusting to adapt in this condition. And to Charlie, although sometimes painful, I believe everything will still fall on proper place, everything has a reason, everything is God. What happens to all of us have a purpose; and you perfectly share your purpose… I hope someday, this struggle will find its solution, and world will appropriately address the reality of its existence. I have another concern, but I posted it under "hyperhidrosis/excessive sweating" forum. God bless..
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1slip75		#116	[url]	[-]
Member Posts: 301 01/21/09 12:04 PM	Knowell, thanks for the post and for coming here to find some answers. It is a tough life when having such a condition like Hyperhidrosis, especially since there is not much that will work 100% or even close to that. So when I read about ETS with is 95-98% I thought I had found the answer in solving my pain growing up with Hyperhidrosis. I still keep myself out of relationships because I feared they would see my sweating and now after ETS I am just simply afraid. And to know, ETS isn't a foolproof surgery. We read of those success stories, but some people here were success stories for up to 8 years before they became a tragic case like most of us here. So please do not have the surgery. The fact that you are in dubai, which I would love to visit there sometime, especially the burj dubai, prolly does increase your sweating. I believe humidity levels affect it more then just pure heat, atleast it is what I experienced. The basic deal is this, you cannot predict in any manner whether ETS will harm you or better your health. But if you read up on the sympathetic nerve, you will find you are messing will more then a nerve responsible for sweat, but it controls most every function in your body. So my question is do you really want to take that chance??? It's not worth it, truly not worth it. Acceptance of who we are is the greatest challenge some of us will face in life, especially with illness that attracts no research, or study. And one that is regarded as gross and disgusting. I have yet to come to terms with either my HH or ETS, so I know I cannot just say to you get over it, as many will tell you. But I can say help yourself by explaining your condition to those around you. If someone is more informed about what is happening to you, then they will probably be less likely to react in a negative manner. Understanding is a great quality in anyone, we just have to give those around us a chance to understand us, but in order to do that you must take the chance of ridicule or embarrassment in telling someone about this problem. But believe me when I say it helps to have people around you that know and understand your problem. Case in point is have you ever written such a letter like this to your friends, fellow employees, or family? Probably not because we fear losing those close to us or turning them away. But your will be surprised at the acceptance others will offer you if given the chance. But check our remedies section for help with Hyperhidrosis, avoid ETS at all costs and keep your head up, as you are a good person, don't let your health tell you otherwise. Charlie
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Strings		#117	[url]	[-]
Member Posts: 32 01/23/09 11:11 AM	Hey Knowell, Welcome to the forum. I think you made the right decision to not have the surgery. I will tell you from personal experience that it is not worth the risk. I had ETS 2+ years ago and 6 months after surgery my PH started to return and gradually got worse ever since. Almost to pre-op condition. So now I have cold sweaty hands and side effects of the surgery. It just goes to show that this surgery is not an effective and reliable treatment for our problem. If the surgeon you contacted told you that ETS for PH would be effective on your feet HE IS LYING. Only lumbar sympathectomy would be effective on the feet because the feet are controlled at a totally different level of the SNS. Charlie and I had the same surgeon and he knows what he is talking about. These surgeons (including ours) will stop at nothing to get you on the table. They will lie, manipulate their statistics and leave out critical info so they can make their f*cking money. They prey on desperate people who do not know any better. Then when they are confronted by patients who give them negative feedback, they will not acknowledge it. One look at Egozi's website and you can just see how fraudulent it is. He states that his procedure eliminates the need for a re-do surgery...but when I confronted him about my PH returning he says: "Well, the only way to guarantee your PH won't return is if we snip the nerve completely".....BULLSHIT...Why did I get clamped in the first place? You won't see one negative testimonial on his site, yet there are how many of his patients on this forum? And s'funny how they show a couple walking on the beach in the hot sun...and not a drop of compensatory sweat on them. I would be drenched. Now he's got three more butchers on there. GOD HELP US. Knowell, my advice to you is to find another solution to your problem and do not give ETS a second thought. You won't have to worry about regretting something you've never done. I regret it completely. Strings
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ugyan		#118	[url]	[-]
Member Posts: 627 01/23/09 01:10 PM	Cutting does not guarantee that the surgery will have permanent results. I had the PH return (after T2 cut/burnt) also within 6 months then gradually increasing. Now I also sweat on my arms, in fact the whole hand has become part of the CS region. This means that 2 year after the op my PH is worse than before the op, and while I had the hand sweating only when was in a stressful situation, now I have it constantly. I still do not sweat on my upper shoulder/neck/head - apart from some strange things happenning on my left eyelid....!!!! By the way, with the return of the PH and sweating on the hand/arm, none of the side-effects have improved, not even the CS!!! I suspect that my nerves started furiously regenerating soon after I was cut. I do sweat fro my palms a lot, but at the same time I have an intense burning, itching sensation on my hands. Not sure what it is or why. Anyone of you has this?
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Strings		#119	[url]	[-]
Member Posts: 32 01/23/09 05:25 PM	I get a prickly, burning sensation on my arms and upper back, but no itching. It makes me wonder if it lies down the road for me. I sweat on the folds of my arms during stessful situations which is just plain annoying. The rest of my arms, neck, upper back and chest and part of my face stay bone dry. My forehead still sweats though. I also get sensitivity on my arms..so my shirt sleeves feel like sandpaper rubbing up against them. I've been prescribed Lyrica for this problem and helps alot but not without side effects of the drug. This sucks..side effects on top of side effects on top of side effects... when the fck does it end? All for a bit of hand sweat. Ugyan, I will add to your comment that cutting doesn't guarantee permanent results...in fact, NONE of these procedures guarantees any permanent results except for fcked up side effects that we have to deal with for the rest of our lives. And of course the doctors won't listen to me so I can't even get a proper examination... they avoid the situation like it's the fcking Plague. They just want to shove pills down my throat and hope it all goes away. Ahhh.. FCK!!!
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knowell	In The Same Boat 2	#120	[url]	[-]
Member Posts: 15 01/23/09 09:28 PM	Charlie, Commenting on the severity of the effects of ETS surgery, is there any legal action being taken to stop this horrible procedure? when will the government body mediate on this issue, and stop this at all?
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