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kiyose

Thinking seriously about ETS

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Hi everyone,

I'm new to this forum. I'm 34 years old and I've suffered from hyperhidrosis all my life. My mother has the same condition. It affects my hands, feet and armpits. My hands drip, even in winter if I don't wipe them constantly.

I went to a thorciac surgeon last week and asked about ETS. He was totally against the idea. He gave me a long talk about how the surgery was only for people with extreme hyperhidrosis and discussed all the risks associated with it. Finally at the end, I showed him my dripping hands and he was shocked. He said it was the worst case of hyperhidrosis he'd ever seen.

He took a blood test to see if I have hyperthyroidism. I have an appointment next Thursday to get the result. If I have hyperthyroidism, then we will look at that disease, rather than surgery. However, if it is hyperhidrosis only, then I will consider ETS.

For those who sweat as badly as me, or did sweat as badly as me, what methods have you tried?

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Kiyose, Read this message board and you will see varying opinions on the ETS procedure. Some say that it ruined their lives. Others claim that was the best decision they ever made. In between are many different results. That may be the real problem with ETS. It's exact outcome appears to be inconsistent from one person to another. Even in my own family, my sister and I had slightly different but significant results. We are both happy to have dry hands but she can't sweat above her shoulders now and I can. This may not seem like a big deal to some people until they loose that ability. Her dry face is aging faster than our other sister who did not have the surgery.

I used the Drionic for some time with positive results but understand that there may be even better devices available now. Do your homework before you decide on ETS.

Good Luck!

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Kiyose,

With all do respect, I do not feel confidently about your the thoracic surgeon you consulted with--just based on his words to you.

For instance, hyperthyroidism will not cause dripping wet hands, underarms, feet, etc. ---that is very specific to HH patients.

Does he have experience with ETS?

How many surgeries has he performed?

I do think you should try iontopheresis first for your hands( there are different machines to try... combined with adding medications to the treatments---you have to read this forum to get advice...). As for underarm sweat, please try Drysol or an equivalent...it is usually irritating---but worth the discomfort for the result(dry underarms).

That said, I am an ETS success story here. I do believe that if all treatment has failed for palmar HH, it is worth looking into. I had a T3 cut, and has very much changed my life and outlook on it for the better.

As KOKOLOCO suggests--read the message boards so you can make an informed decision----DO NOT just rely on a docs opinion!!

Good Luck and keep us posted!!

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Thank you for your reply Kokoloco. I want the surgery, but I'm also really scared about the risks. If my hands were just slightly damp, it wouldn't bother me so much, but it is winter, and I'm dripping with sweat right now. I get so embarrassed shaking hands with people at work functions and like other severe hyperhidrosis sufferers, I avoid a lot of social situations. I started looking into ETS back in 2005 and I have read all the pros and cons. I guess in my mind, I'm trying to work out what's best for myself. Having dry hands (my sweating is severe, which means I can't even play card games because after a few minutes the cards are wet) or having CS in a place that I may be able to hide from others. I realise that there are worse side effects than severe CS, so I need to decide what to do. However, all this back and forth trying to make a decision is making me really depressed.

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Hi mchh. I currently live and work in Tokyo and what is available here is very different to other countries. The surgeon that I'm seeing is at Tokyo University Hospital. He has performed ETS before, but not many times, as the hospital is against ETS except for extreme cases. Iontopheresis is unavailable here and botox does not come under any insurance schemes. I have tried Drysol and Maxim, but they don't work for me.

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kiyose, Interesting that you mentioned a university hospital. I had my procedure done at USC University Hospital in Los Angeles. My surgeon had also done several procedures before but these university surgeons don't do hundreds of these operations like those that do this solely as their main line of work. I don't know if this is a good thing or not.

Perhaps your surgeon will let you contact some former patients of his as references. I can relate to your story about card playing. Take some comfort in knowing that you are not alone. There are plenty of people who have gone through what you have.

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Hi KOKOLOCO

Can you tell us a bit about your surgery? What was cut, your symptoms, how long ago, your satisfaction level?

I am curious because I had a T3 cut, so while my palmar and underarm sweat are cured----I am still left with facial blushing(although it is better since the surgery).

I too had my ETS done at a University hospital...Columbia University in New York. I always wonder whether the doctor was too cautious in not doing a T2 cut? Did he want to spare me some possible very problematic CS? I do indeed have CS now, but it is very tolerable in comparison to my symptoms prior to the surgery!!

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One of my main concerns at the moment is if I do decide to go ahead with the surgery, do I go with Tokyo University Hospital or fly to the States to have it done by a doctor who focuses on ETS only. I like the surgeon I'm seeing as he wasn't pushing me to have ETS and explained all the risks. He did a blood test first to determine if there were any other medical reasons for my hyperhidrosis (will find out soon). I know he's not in it for the money, which makes me feel more comfortable, and he is part of a University Hospital, so I feel doctors there would generally be more careful. Not sure. Will have to think about it more.

Still haven't decided about the surgery, but yesterday was quite cold and I was sitting with my students who were all rugged up and I was there sweating all over and thinking I wish I was normal.

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kiyose, I went with my university surgeon mostly because of my medical benefits. As I have mentioned previously, I do have a couple of noticeable scars on the sides of my chest each about 1/2 to 3/4 inches long. I sometimes wonder if this is because my surgeon was more results oriented and not too concerned with aesthetics. My sister had her ETS done at a "specialist's" clinic and has minimal scarring. I think that some of these clinics can afford to have the latest equipment which need smaller incisions to perform the procedure. That is my theory anyway.

mchh, There are more details on my experience on another thread titled "3 year anniversary" in the Post ETS section. I really do not remember what was cut so I don't want to mislead anyone. My procedure was done solely for palmar hyperhidrosis and not for blushing. Some of the most vivid memories I have from the days after my operation were the pain in my chest (didn't expect it to be that intense) and the "purge" sweating 4 days afterwards. Since then, my hands have been sweat-free and I have dealt with my CS as a nuisance not noticeable to most people.

As far as my satisfaction level...yes, I am glad that I had ETS done and consider myself very fortunate to get the results that I did. However, if I wasn't able to sweat from my head when exercising (like my sister after her ETS), I think I would have mixed feelings about my decision.

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Having the surgery in Tokyo would mean that I would be covered by health insurance. If I was to do it in the States, I would have to pay for the airfare, accommodation and operation. The difference between the two would be around $8,000. I really don't know what would be better. The surgeon said the cuts would be about half an inch under the armpits and also on my chest, between the collar bone and breasts. I said that in the States it's under the armpits only, but he said that they have never done it that way. I must admit I am a bit vain, so I would like minimal scarring.

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Perhaps someone else can verify but I believe that this procedure can be done with much smaller incisions each 1/4 inch or less. I am not familiar with those other 2 cuts your sugeon spoke of. I really didn't know my scars would be so obvious but it doesn't matter that much to me and wouldn't have altered my decision.

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Yes, that is true...my scars are about a 1/4 inch and not detectable. I have to look for them.

I had surgery with Dr. Gorenstein at Columbia University and feel very comfortable recommending him. I was never pushed toward surgery or sold in anyway. In fact, I had to pursue it! In a weird way, during the consult I was wishing for him to push me a bit more. I believe this is true because if things had not turned out as well as they did---I would have had someone to blame. I know that sounds crazy--but I am very hard on myself and would have found it difficult to live with a poor decision that I inflicted on myself. I was looking for someone to tell me "you must have this done"--but nobody ever did. It was my decision in the end---and I made a good one----THANKFULLY!! :)

But, that said..my hands and underarms are dry---and the bonus was my blushing improved(but still a problem). And KOKOLOCO put it best when he said dealing with CS is a "nuisance"--- but certainly not something I make career or personal decisions over!!!

Kiyose, feel free to contact me if you have specific questions!! I would be happy answer any questions about my ETS experience.

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Thank you for all your comments kokoloco and mchh. I made a mistake, I meant to type 1/4 of an inch, not 1/2. I teach English in Tokyo to children and adults. Yesterday we had to do a kids workshop and I knew I would have to hold hnads or high five other teachers. As much as I hated doing it, I faked a cough from the beginning of the day, so when the workshop came aropund, I had an excuse not to touch anyone. It was less embarrassing than explaining to teachers why my hands were dripping in the middle of winter.

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kiyose, Don't feel bad about feigning illness to cover up your condition. I've done it myself and I know others here have done similarly. People here have come up with different suggestions on how to mask their sweaty hands. One interesting idea was to carry a water bottle around with you, preferably one with ice-cold water in it. If the water is cold enough, it should generate a fair amount of condensate on the outside of the bottle. Not only would the cold bottle minimize the amount of sweating on your hands, any sweat could be attributed to the condensate. Carrying a water bottle around is really not unusual in today's health conscious society. A search of the archives should uncover some other tips on coping with sweating in social situations.

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I've researched many forums and sent emails out to people who have had ETS. I'm really grateful to be reading all the experiences people have been through. It's great to have the opportunity to talk to people who have had surgery done by different doctors and hospitals, so I feel the opinions aren't biased. The people I have contacted all had severe hyperhydrosis and have been very happy with their surgery. I'm starting to wonder, those who haven't been happy, maybe they weren't severe to start with, so the CS is now worse than their original condition.

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HI kiyose,

You should look into having just the T3 cut, which I had done. I believe there is much less risk of severe CS as opposed to involving the T2. I happen to have facial symptoms as well as the hands, feet and underarms. Since my ETS, my palms are dry(but not annoying as I have heard in some cases), my underarms are dry, my feet are better(they still sweat a good deal), and my facial sweating/blushing is better.

I particularly think you should inquire about just the T3 if you have no facial symptoms....why cut more than you have to( I believe that T2 nerve inlvolves a lot more, like thermoregulation, etc.)

Again, I think it is great you are asking for many peoples opinions. It is a hard decision...I was there!! I do think a lot of dissatisfied patients are those that had ETS just for blushing. I can only imagine waking up having no defense mechanisms in place for sweating ---to now cope with CS!! That must be a nightmare?? I also think that earlier on docs were cutting T2, T3, and sometimes T4...Wow---sounds like a sure recipe for disasterous CS!!!! Most docs now try to limit what they cut, I believe?

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Hi Mchh,

I will see my doctor on Thursday and see what he recommends. I will discuss with him your suggestion about T3. I sweat excessively in the area between my lips and nose when I'm really hot or very nervous. It only started about five years ago, but my face will be completely dry and I'll have a row of sweat there. It's very bizarre.

Do you have any advice about which doctor to go to? As I said before, my surgeon is against ETS unless in extreme cases, so he hasn't performed this surgery a lot. However, it is a university hospital and I can get insurance. He assured me it was an easy procedure. Tokyo University is one of the top hospitals in Japan. My other option is flying to the States to a surgeon who only performs ETS. This would mean a big difference in costs, but the surgeon would have more experience. Can you think of any other pros and cons that I've left out?

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Yes, kiyose---

Check out the website for Dr. Lyall Gorenstein at www.hyperhidrosiscumc.com. He is the physician that did my ETS, and I feel very confidently about him. I did not get the vibe that he was shady in the least, as he works for Columbia University Medical Center. He is often voted among the top thoracic surgeons here in New York City and the US for that matter.

I also know that he responds to email very well. So, I would feel free to ask any/all questions you may have and explain your situation geographiclly, as well as your insurance concerns.

It may seem as though I am encouraging the ETS too much to some...but it truly has changed my outlook so much on life. I was in a bad place prior to the surgery, and now I wake up looking forward to each day. I NEVER thought that I would feel this positive.

I do still have a blushing/sweating problem---but it is not crippling as it was before. I just avoid some select situations, as opposed to prior ETS---where I avoided ALL situations!!

As for any hidden outcomes, there was none for me. I was fully aware of the CS, and I did get it. It is very manageable, and again a nuisance---not a life/career hardship. If you were going to live in a very humid climate, for instance, you might want to think about your choices. I, for one, will NEVER live in a constantly humid climate....NYC has about 2 months of it, and thats about all I can take.

Feel free to keep asking questions---the more informed, the better decisions you can make---the easier you will sleep at night. As for the surgery itself, I have had worse experiences at the dentist. My chest was sore for a couple of days, but I ran 4 miles three days after the surgery(probably not recommended! :) )

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Thank you very much for the link, Mchh. I forgot one point that was a pro for doing ETS surgery here. My surgeon said they hospitalise the patient for four days. This includes one day to do tests before the surgery, one day for the surgery and two days to check that there are no complications.

I had surgery in Tokyo University Hospital last year for glaucoma and the doctors and nurses were great. It seems for all surgery they admit you one day before for tests, then you are required to stay for a few days after for check-ups. The glaucoma surgery like ETS is done as out-patient surgery in other countries. It makes me feel safer being in hospital and knowing that everything is fine before leaving.

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Kiyose, In response to your Feb. 20, 2:03 post:

That could be true for some but I think that there are a number of reasons that people aren't happy with their results. Many of those unsatisfied patients, no doubt, had severe symptoms but were mis-informed or misled as to the risks of the procedure. Also complicating the issue is the fact that people have the ETS procedure done for different things and I don't know that the procedure can be "fined-tuned" to differentiate between treating for sweaty hands, feet, or head, or treating for blushing or flushing.

Again, in my own situation, I had a severe case of palmar hyperhidrosis. ETS stopped my hand sweating. I enjoy running and still sweat from my face which helps keep me cool. Had I lost that ability as many have after ETS, I might feel different in my opinion of the surgery. Unfortunately, before the the operation I didn't or couldn't understand how important sweating from above the shoulders was to me. As it is, my CS is manageable and I consider myself decidedly satisfied with the outcome.

In your favor, perhaps, is that it seems that a much higher percentage of satisfied patients are those who are seeking relief primarily for sweaty hands.

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Kokoloco, you said that your sister doesn't sweat above her shoulders any more and therefore looks older. Can you please explain this in more detail? Apart from her appearance, how else does this affect her? Thank you.

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Kiyose, Since my sister had her ETS surgery, the skin on her face gets very dry. She says that she has to use a lot of lotion which, in itself, is not that unusual. But when I see her next to our other sister, who is a couple of years older, I notice a difference in their complexions. The difference is subtle and my sister is still an attractive woman(I don't want to make it sound like she has turned into an ogre!). I realize that there could be many other reasons for this but she herself believes that her extra dry face is related to the fact that she no longer sweats from anywhere above the shoulders. That being said, she still is glad that she had the operation. She actually encouraged me to have the procedure done as well. She doesn't seem to be too concerned about CS so I think mine is worse, although tolerable.

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Hi everyone,

I got my results today and I don't have hyperthyroidism. I'm booked in for ETS surgery April 2-5. I told my doctor that I'm still not 100% certain about surgery and he said I can cancel anytime, even right up until I'm on the operating table. I have an appointment Mar 13 to have two hours worth of tests done. These include tests for diabetes, HIV, respiratory problems etc. Japanese hospitals are amazingly thorough. They want to know exactly what they're dealing with before they cut you open. I feel really good, much better than last week. Everything seemed so overwhelming before.

The surgeon said he would cut T2 and T3 and the two chest scars are non-negotiable. They're about 5mm in length and they only perform this type of surgery at the hospital. I don't want to have any scars. I wonder if I could lessen their appearance in the future with some kind of cream.

I was thinking today that I have suffered from hyperhidrosis all my life. I can't really imagine what it would be like not to sweat when shaking hands with people. I think if I go ahead with the operation and it is successful, I'll be touching every single person I can get my hands on.

Kokoloco, your sister's dry skin, to me is manageable. If that is the worst side effect I get, then I will be very happy. At the moment, I'm most worried about the cases I've seen where people sweat so much (youtube) that they need to change their clothes three times a day. That scares me. I don't want to go from dripping hands, armpits and feet to a dripping body.

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Kiyose, you are the first Japanese person I have heard from on these forums!

Anyway, maybe you can help me improve my list of Japanese ETS surgeons:

www.no-ets.com/surgeons.html

Perhaps you or your doctor knows other surgeons I am missing or errors in my estimates?

You will find this Japanese study useful (it mentions 10,000 ETS surgeries having been done in Japan):

http://nv-med.com/atcs/pdf/2004_10_1/4.pdf

As usual, the advice given to you here is correct in that try everything else extensively before getting ETS.

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Hi Zinedine, thank you for your post. I read your information before during my research into ETS surgery. It was very interesting and useful.

I have received a reply from another person who had surgery done nine years ago. He is also happy with his surgery, though his torso sweats a lot now during hot weather. I'm not sure how I feel about that. Tokyo is really hot and humid. I wonder what will happen to me in summer.

From my research, and please correct me if I'm wrong, CS is like Russian roulette. Some people with severe hyperhidrosis will end up with very little CS, while others have severe CS. There is no pattern. Is that right?

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