Hi,
I had ETS surgery (cutting of T2) about 10 years ago for facial HH. The surgery worked very well and I had virtually no immediate complications from the surgery (infection, nerve damage, etc). I now experience severe CS on my trunk (worse on my back) that is pretty debilitating. At this point I'm considering reversal surgery (and am very open to any insight).
I had the surgery done in San Francisco, CA by a now-retired thoracic surgeon (I live in the Portland, OR area). He did mention CS as a possible side effect but didn't present it as a huge risk. To be fair, I was so desperate that I probably wouldn't have listened anyway. That's why it is incumbent on doctors to save us from ourselves. Any surgeon that performs invasive, irreversible surgery to treat conditions where patients are despondent and vulnerable should overemphaasize the risks and minimize the possible benefits (under-promise and over-deliver).
The surgery was uneventful and recovery was quick and I had no immediate complications. In terms of efficacy, the surgery was tremendously successful. My facial HH was immediately and completely resolved, as was my hand-sweating (which wasn't a huge problem, but they are 100% dry now). I still experience gustatory sweating occasionally with very rich or spicy foods but it's not a problem at all. I also still experience blushing but I believe it may be better than it was.
That's the good part. Like many others, I now have severe CS on my trunk (worse on my back). I don't have any of the other dry scalp or pain syndromes that others have though, so maybe I'm one of the lucky ones.
Interestingly, having no moisture on your hands does cause some problems. It's hard to count out money (seriously) or pick things up and it's almost impossible to deal cards (and I used to be a BJ dealer in Las Vegas in college!). It's also hard to play basketball as you really need a little moisture on your hands to properly grip and put spin on the ball.
I've tried hyoscyamine and Robinul and find that Robinul seems to work better but really only reduces the CS about 20-30% most of the time. Often, it doesn't matter what I take.
I am now considering reversal surgery because I'm recently single and know I would be tremendously more confident if I wasn't worried about this. I would consider learning to hypnotize women to become intensely turned on by profuse sweating but that sounds like a lot of work.
I've spoken with Dr. Reisfeld in LA and he seems like a pretty solid guy (although I've only spoken with him once over the phone) but I know there's just not much data at this point. What I want to avoid is being that same desperate person that led to this in the first place but in some ways it is unavoidable. You start to feel that anything is better than your current situation (when obviously that isn't true).
Recent data is scarce, partially because the surgeons are worried about being sued or violating HIPPAA privacy laws and probably because the procedure is still evolving. It's also difficult to find many reversal stories (I've found a few but I want to see tons of them) and the surgeons are either unable (again, HIPPAA) or unwilling to give patient testimonials for the most part. So I would really appreciate anyone with information on either specific surgeons or methods of ETS reversals.
Good luck everyone.
10 yrs. post-ETS for facial HH....considering reversal!!
I feel your pain
[color=red][/color] I too suffer from compensatory sweating since my surgery in 2008. I agree 110% as to what you said. I too would have my surgery reversed if I had the money. My insurance no longer pays for this type of surgery which they now call "elective" - I keep my operative report on my desk at work and look at it occasionally. I just now picked up on his statement about "explaining previously 3 times and again this morning before surgery about the risks of ETS surgery - Compensatory sweating" I like you, was so desperate to stop the head and facial sweating I would have done anything to eliviate my sweating. He should have stressed LOUDER AND CLEARER - the PROBABLE - side effects. Now I suffer worse than before. I wish you the best in finding a surgeon who will do the reversal surgery you are looking for. I will be interested to see if you are happy with the results. Good Luck - 
Good luck! I'll just share my (extended) experiences re the ETS procedure. I’m 55 and suffered from facial blushing since I was 14. It was so obvious it held me back socially, at school, even at work. I made excuses not to go to social outings, and left more than a few rather early because of it.
I heard about ETS about 15 years ago; this was when the surgeon would simply cut the relevant nerves, but it wasn’t reversible. 6 years ago I heard that the nerves could be clamped, and if the procedure didn’t work or the side effects were too bad, then the clamps could be removed, the nerves would recover and I’d just have to put up with the blushing again. I was told only 1 – 2% of patients suffered bad side effects. After several discussions with my surgeon, who was very patient and understanding, I had the procedure done. Initially the cost to me was kept to $1500 (AUD) because of my private health cover.
Well, it stopped the facial blushing completely, so I can’t complain about that, but this was completely out-weighed by the compensatory sweating. On any day over about 18’C (about 70’F) I could feel my back and chest start sweating. The only thing I could do was to wear a singlet underneath. This at least kept the sweat off my shirt so no-one would notice. The body core seems to heat up and the sweating mechanism goes into overdrive, with sweat coming out everywhere except above the armpits. It has curtailed activities I do in life and I would go so far to say that it borders on a disability.
So I went back and had the clips removed, and sure enough, the nerves didn’t recover, having died in between the clamps.
So I again went back a year later and the nerve ends were ‘freshened up’ and a piece of blood vessel was taken from my left arm and used as a sleeve. This was placed over the nerve ends, making it possible for the nerves to grow and reconnect. Apparently this can take 5 years, as nerves grow very slowly. There has been some increased sweating on my arms over the past 2 years, so I am hopeful things will recover.
All this time the surgeon was just brilliant, and I never blamed him for the side effects, except to say that I thought the clipping procedure was flawed. He was a true gentleman, supporting me the whole time, and keeping me up to date of any new developments. He also ensured that with the subsequent operations, I was not out of pocket at all.
In my opinion, blocking the nerve impulses is overkill. I feel that if it was possible to block say, half the impulse, then the desired effect could be achieved. I’m no surgeon, but maybe the clips could be made of a softer material…anyway, hopefully I’ll have a more cheery post in a couple of years, if the nerves reconnect that is.
I heard about ETS about 15 years ago; this was when the surgeon would simply cut the relevant nerves, but it wasn’t reversible. 6 years ago I heard that the nerves could be clamped, and if the procedure didn’t work or the side effects were too bad, then the clamps could be removed, the nerves would recover and I’d just have to put up with the blushing again. I was told only 1 – 2% of patients suffered bad side effects. After several discussions with my surgeon, who was very patient and understanding, I had the procedure done. Initially the cost to me was kept to $1500 (AUD) because of my private health cover.
Well, it stopped the facial blushing completely, so I can’t complain about that, but this was completely out-weighed by the compensatory sweating. On any day over about 18’C (about 70’F) I could feel my back and chest start sweating. The only thing I could do was to wear a singlet underneath. This at least kept the sweat off my shirt so no-one would notice. The body core seems to heat up and the sweating mechanism goes into overdrive, with sweat coming out everywhere except above the armpits. It has curtailed activities I do in life and I would go so far to say that it borders on a disability.
So I went back and had the clips removed, and sure enough, the nerves didn’t recover, having died in between the clamps.
So I again went back a year later and the nerve ends were ‘freshened up’ and a piece of blood vessel was taken from my left arm and used as a sleeve. This was placed over the nerve ends, making it possible for the nerves to grow and reconnect. Apparently this can take 5 years, as nerves grow very slowly. There has been some increased sweating on my arms over the past 2 years, so I am hopeful things will recover.
All this time the surgeon was just brilliant, and I never blamed him for the side effects, except to say that I thought the clipping procedure was flawed. He was a true gentleman, supporting me the whole time, and keeping me up to date of any new developments. He also ensured that with the subsequent operations, I was not out of pocket at all.
In my opinion, blocking the nerve impulses is overkill. I feel that if it was possible to block say, half the impulse, then the desired effect could be achieved. I’m no surgeon, but maybe the clips could be made of a softer material…anyway, hopefully I’ll have a more cheery post in a couple of years, if the nerves reconnect that is.