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Befree

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Hi liss, yes one side was still blushing and the other not. I remember going into my local shop and felt a massive blush coming on, one side was burning so bad and the other side was cool with no redness. I work from home as I'm self employed so work wasn't a problem for me. You'd have to try and angle your face so people don't see both sides at once until both surgeries are finished xxx

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Are you from the uk? They like to do them separate here, it's supposed to be less risk and gives you the option to carry on or not. I guess you can only ask, if the doctor is happy to do it then go for that option. It was nice to have them done separate so I could feel the difference X 

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I understand, when I heard this surgery was possible I knew straight away it was the only thing that would fix me. All these therapists, medication and hypnotherapy, it was never enough for me. I needed something to just switch off that side of me. Just disconnect me from the whole feeling and build up of blushing. If they don't let you have both sides done at the same time then please don't worry, in a way it lets you see for real how the surgery has changed you, not just memories. It truly is amazing and I hope it works for you as it did for me xxx

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Wow, im happy for you befree, I have a concern.... When they did the surgery on one side of your face. Was the other side blushing? Did you have to stop working and be home resting? Can you notice one side red and the other pale? Thats really bothering me because my vacations starts on july and I dont have any pto, thanks in advance

Not all doctors do one side at a time, I've actually only read of this approach being used in Europe. 

Dr. LG does both sides at once, so not to worry.

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IJR what symptoms are you suffering with that you are trying to get help with? Wow you had your surgery done a long time ago. Are you from the UK too? Did you have your surgery done for blushing or was it a sweating problem? x

Hi Befree.  Really sorry I'm only just replying to your post from late-Feb (must have missed it!).  The biggest problem for me over the last fourteen years (since I first started getting side-effects) undoubtedly is compensatory sweating.  I also have many other problems now though, e.g. very regularly feeling extremely overheated (due to not being able to sweat through 'normal' areas now like the face, forehead, scalp, neck, and underarms).
In all honesty my acupuncture sessions over the years (inc recent ones) have been a desperate attempt to try and repair the severed nerves, because there are studies out there which show acupuncture can help with nerve regeneration.  However after spending probably another £900-£1000 over the last two years on acupuncture (and also Chinese cupping) and not seeing any change in my CS or any signs of nerve regeneration I've finally accepted that this is just way it is now.  Therefore my course of action to help improve the side-effects (and trigger any possible future nerve regeneration if my body was to miraculously start repairing itself) from now on is simply:

Exercise three times a week
Tai chi as many times a week as possible
Drink minimal alcohol
Chia seeds
Self-help books
Body brushing and contrast showers

That's my self-treatment from this point onwards, lol.  :D

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Thanks for replying, oh dear that sounds terrible. I can still sweat under my arms and my upper body/head (the right side much more than the left at the moment) and in very grateful for that after reading how not being able to sweat from those places has affected you so much. Was you cut at t2? 

Would you say you sweat as much in those new areas as you did before you had the ets on your hands and feet? Xxx

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Hi Befree.  I'm pleased to hear that for you.  It sounds like the results, effects and side-effects really can vary from person to person, e.g. I've heard about ETS stopping people's hand AND foot sweating, but for me ETS only helped hands, that's why I then had lumbar sympathectomy for the feet.  As crazy as it sounds, I have no idea what levels I was cut at!

Yes, without doubt the compensatory sweating in areas like the back and legs is as bad as my hands and feet used to sweat, and I much preferred my sweating 'state' back then, for example as embarrassing as palm sweating was at least your hands was exposed and so could somewhat dry say on a windy day.  When your sweating like hell through your back now though and wearing clothes there's no way for the sweat to escape (evaporate).  I feel so limited by what clothes I can wear, and generally feel I have to wear a minimum of two tops to go anywhere most of the time.

I've worked hard at the gym over the last 1-2 years to lose twenty pounds, but when you're leaving there with barely a trace of sweat on your face it makes you feel like a freak.  :(

Anyway, I won't bore you any further, lol.  :)  I'm always glad to hear of success stories like yours, but for me personally the operations were the biggest mistakes of my life.  When I look at photos of myself pre-surgery smiling and having fun on summer days it fills me with sadness if I'm truthful.  Again though, it really does seem like roulette with ETS, so I realise I was just very unlucky, because clearly there are also success stories too.

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Oh no, that makes me feel so sad when I read this. So it's as though the sweat for your hands and feet have just moved elsewhere and its not actually fixed the problem fully. 

I know doctors have said in the past (from what I've read) that this surgery was always for sweating problems and not facial blushing but I'm almost convinced it's the other way around! If they are experienced doctors and cut at the right level then the results for blushing can be completely life changing for the better. The sweating problems seem to just move that issue elsewhere.

Do you suffer from flushes at all or is it just the sweating problems you have?

I had ets purely for blushing and the cs sweating I'm getting is not an issue at all for me at the moment. I've put a picture on of my top after 2 hours of constant movement and that's the worst I've got so far. I'm nervous and excited at the same time to experience summer to see how it effects me then and I'm going to Disney in Orlando (from the uk) in summer so a massive tester. 

Would you look at my picture and let me know if possible if this is how you experience cs too. I don't know what level I have as there's very little out there to compare it to. 

Also are you from the U.K.? And have your symptoms changed or got worse over time or about the same. Thank you for replying, it means a lot X 

Edited by Befree

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Oh no, that makes me feel so sad when I read this. So it's as though the sweat for your hands and feet have just moved elsewhere and its not actually fixed the problem fully. 

I know doctors have said in the past (from what I've read) that this surgery was always for sweating problems and not facial blushing but I'm almost convinced it's the other way around! If they are experienced doctors and cut at the right level then the results for blushing can be completely life changing for the better. The sweating problems seem to just move that issue elsewhere.

Do you suffer from flushes at all or is it just the sweating problems you have?

I had ets purely for blushing and the cs sweating I'm getting is not an issue at all for me at the moment. I've put a picture on of my top after 2 hours of constant movement and that's the worst I've got so far. I'm nervous and excited at the same time to experience summer to see how it effects me then and I'm going to Disney in Orlando (from the uk) in summer so a massive tester. 

Would you look at my picture and let me know if possible if this is how you experience cs too. I don't know what level I have as there's very little out there to compare it to. 

Also are you from the U.K.? And have your symptoms changed or got worse over time or about the same. Thank you for replying, it means a lot X 

Hi Befree.  Yes that's exactly it.  Instead of sweating excessively on my hands and feet (as well as a 'normal' amount on my armpits, face, forehead, scalp and neck), I now have extremely dry hands and feet (as well as no longer sweating from my armpits, face, forehead, scalp or neck, which may sound great but trust me - it isn't!), but sweat an awful lot through the whole of my back, the stomach, chest, sides and legs.

I agree.  It's still promoted as a 'cure' for excessive sweating, but it honestly isn't - by cutting those vital nerves you are just moving the problem around.  What really hurts the most is that I was referred by a dermatologist to a surgeon without ever been allowed to try all of the non-surgical treatments.  Iontophoresis, I feel, would have been the real -life-changer for me instead of this horrible surgery, but oh well...


It's mainly sweating problems, but I do get flushed (e.g. I always look redder on photos than my friends), but the near-constant feeling of overheating is a real problem too.  I think they call it thermoregulation - the system in your body which controls temperature, such as by sweating, and mine must be really messed up, because to have ETS is one thing, but to have lumbar sympathectomy on top is just unreal.

Believe it or not though I am trying to be positive despite all of this.  It hurts like hell to know what your life could have been like knowing eighteen years ago what you know now, but unfortunately that's not how life works eh.  I really do wish though that people were fully informed about ALL non-surgical options before been forwarded for surgery, e.g. I'd never even seen or heard the word iontophoresis until two years after my final op - how can the NHS be so incompetent and negligent?!!

Yes I've seen your photos Befree, and considering how much walking you said you did that doesn't appear much CS at all.  :)  And again, bear in mind that my 'horror story' is a man who has had four lots of nerves cut rather than two, so of course my case is an extreme one!  That's why although yes I would say my situation has got worse over time, I ws yourself to worry, because like I say, mine is probably the rarest of cases - I've never read about anyone else having both types done.

And yes I'm from Yorkshire in the UK.

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IJR thank you so much for getting back to me and answering all of my questions. I'm glad you are looking to the more positive side of things, although I can imagine how difficult that must be. 

I still have the ability to sweat normally from my arm pits and my neck/face on the right side. The left side of my neck.face goes clammy at the moment rather than actually sweating. 

Its understandable how frustrated you must be if you have no sweat in the whole upper body. I really don't think this surgery is meant for sweating problems, its only a matter of time before (hopefully) they will stop it for that reason. I agree, from the stories I've read with sweating problems it seems to move it to other areas and comes out worse. 

Well thank you for explaining your experience and the details before and after your surgery. I have a few summer months to go through next so we'll see how that goes. So far everything is much better than before and I don't feel too much different than before my surgery other than the anxiety of blushing has gone and the whole build up of it. My hands have started feeling the cold again too just like they did before. 

Thanks again for explaining things, it really does mean a lot and everybody whos been through this surgery has such different results because of how much they sweat before, whether it was for blushing and how much they were cut xxx

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No worries at all, I'm always happy to answer any questions and help in any way possible.  :)

It sounds like you recovery and ongoing progress has been excellent then, which is great.

I guess another thing is that medicine in the UK has progressed since I visited that dermatologist in 1998.  Now with technology, the internet etc patients are probably a lot more informed, but I went in to the surgery with probably only 5%-10% of the information I needed in order to make a truly informed decision.  Perhaps if I'd been born a decade later I might have worked out okay now eh, lol.  :D

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Definitely, perhaps nowadays they would know not to cut in so many places ?

A little update: I've just had a cheese butty with salad cream and had gs on the right side, I'm guessing it's from the salad cream x

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No7 green primer from Boots but also look on ebay/amazon, just one blob on your finger should be enough for your whole face (putting more on your cheeks) and then go over that (it doesn't matter if you let the green primer dry or not, you can do either) with Rimmel stay matte which is a compressed powder and you can get different colours, I use Peach glow. Just dab this over the whole of your face :) 

IMG_1551.JPG

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Fedup77 im using the green primer(see picture above) and dermablend foundation. I did not use the london rimmel stay matte because I look too pale. I also go the bobby brown correction foundation. That is a little bit expensive but it does wonders. So I apply the green primer then the dermablend foundation and I do put some of the bobby brown corrector(peach). And finally I put my regular broncer for my cheecks

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Hi all,

An update:

I walked 1.6 miles steady pace half way and then for the remainder a fast pace and this was the result in the pictures below. As I've said above, I definitely have not lost the ability to sweat under my arms (surgery purely for FB) and this sweat has not changed in the amount pre surgery to the amount post surgery. I've also uploaded a picture of my top (picture taken of the back!) Hope this helps someone making a decision one way or the other :)  (sorry the pictures small of my back, i struggle to shrink them to the correct size thats allowed to be uploaded on this site)

et.PNG

et1.PNG

Edited by Befree

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Well I'm pleased to have experienced 26 degrees here in the uk, yesterday was a very stuffy clammy hot kind of day, the other days we had quite a lot of wind around. We went out to see some scenic gardens and walked around in the sun, then had a 45 minute drive back home in a very hot car lol 

The left side of my head was clammy and damp and the cs was fine, mild and didn't come through my top. 

Overall still extremely happy with my results and happy to have experienced the hottest day yet and still feel like me ?

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Short update:

 

When eating certain foods the right side of my face/neck is still able to sweat and the left still gets clammy but when I excersise, even walking or on the Wii fit both sides get damp and can sweat. Excersise brings sweating to the left side more than eating certain foods whereas the right side feels it can trigger just as much whether it's eating or excersise. Also soon after my surgery my face would not be shiny all day, now it is shiny after a few hours. I'm assuming this is because the ability to sweat in my head and face is more now than it was shortly after surgery so I just powder my face to take the shine away x

Edited by Befree

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