Jump to content
troubled

Had ETS 4 Months Ago, My Story

Recommended Posts

Hi Minnock.

 

Thanks for getting back to me. It's a killer i know. I just know i cannot carry on like this for much longer as it's stopping me getting on with life.

 

I just want to stop going red and the FEAR of going red. Always saying in my head 'please dont go red today' or if someone speaks to me sometimes i dont even concentrate on what they are saying because im just saying in my head 'please dont go red please dont go red' - It's literally taking over me.

 

Has the surgery stopped this or at least reduced it by a large amount?

 

Would you say it's changed your life or at least signifiantely changed your life?

 

Out of 10 how bad was it for you, and how bad is it now out of 10? For example I'd say im a 9/10 and my mate for example is a 2/10 (normal person blushing) -(never really goes red even in situations i know i would of died of redness).

 

Does it stop the mental thought of going red?

 

I have no issue with sweating at all - will the side effects cause me to sweat more than im used to (i would hate that) ?

 

Are there situations where before the op you know you would blush - and now after the op, you don't go red in that same sitaution. Can you give me examples?

 

Has it made you more confident?

 

Would you reccomend me to do it?

 

Where are you from? Did you get it done privately or on the NHS?

 

Thanks again!

 

J

Share this post


Link to post
Share on other sites

Hi Jayster999

 

After having had ETS with it's resultant success, I have no hesitation in saying that facial blushing is a physical malady, not mental. Therefore, physical treatment such as ETS would have the most direct impact as a remedy. Now, will ETS cure you? I can't really say 100% that it will. Having read numerous posts on this subject, there is some evidence that ETS hasn't been effective for some individuals. But, the percentage of success is certainly on your side. It took me 10 years to decide to do it and I am completely satisfied with the decision, compensatory sweating not withstanding. 

 

There had been an extensive ETS satisfaction survey done in the late 1990"s through into the early 2000's which showed overwhelmingly high satisfaction rates. It has three columns: Diagnosis (FB, Palmer sweat, Axillary Sweat, etc.), Current Results, and Overall Satisfaction. The report has 9 typewritten pages and I've got it in a pdf file. I do not know the source of the survey and it no longer exists on the web, but I  can email it to you if you are comfortable with sending your email address using this site's private messaging feature. (Anybody else as well)

 

Which surgeon to Use? Bottom line, contact a surgeon who has had a fair amount of experience with the ETS procedure. How do you find one? Spend a lot of time on the internet researching surgeons within the geographic range in which you're willing to travel is one of the ways. Check their credentials and in arrangng for your first appointment ask about their experience. In your initial appointment note what T level(s) they recommend to cut/clamp. See how it corresponds to the chart below.  Do you have a comfort level with the surgeon, recognize your gut feel.

 

Be fully aware of the side effects and be prepared if you choose ETS, you will have a few, if not all. Be willing to do the trade off, facial blushing for compensatory sweating for instance. Again, you will have a side effect(s). 

 

Facial Blushing T2
Facial Sweating T2 or T3
Hand Sweating T3 or T4
Underarm Sweating T4 or T5

 

Let me know if you have further questions and good luck, Jay.

Troubled

Share this post


Link to post
Share on other sites

Hi Jay, I don't know whether you've made your decision yet but yep, I've been there - spent 30 years going red at the slightest hint of people looking at me. It really affected almost every aspect of my life and I developed strategies to try and avoid embarrassing situations; I tried alcohol, drugs, sitting next to open windows/behind doors or pillars/at the back of the room/in the dark - anything to try and avoid those intensely stressful blushing attacks. In fact it dominated my life because unfortunately I became quite successful in a career where I had to stand in front of people and teach/perform. No medication would have any effect! Eventually I had ETS surgery in Sweden (Dr Drott) - it cost around £2800. I would have to say it transformed my life overnight! Although I'm still quite shy (nothing would alter my personality) I haven't blushed once since the surgery 13/14 years ago. I read some of the on-line forums where ex-patients have complained bitterly about side-effects but I think I've been relatively lucky. Yes, there is some compensatory sweating afterwards - especially in stressful/warm conditions but we were warned about this. Nothing will stop this - no antiperspirant will help reduce this unfortunately and once it's started it takes a while to stop. What did I do? I started to wear a jumper/jacket/vest to hide it otherwise it would be too obvious - although once I started doing this I suffered less because I was no longer bothered about the sweat patches showing. I also positioned fans close by at work in case I needed them although I didn't use this option very often. It's all about which might affect you most; signs of sweating or blushing like a beetroot 5 or 10+ times a day. I know which I'd rather put up with! 

Share this post


Link to post
Share on other sites

Hello Troubled, I had ETS done but was so young at the time, I had done little research and had no idea facial blushing was connected to the sweating problem. Now 10years later I'm considering getting Micro ETS to sever T2 level. I'm seeing so much positive feedback on here but I'm curious if this was just normal ETS that you had done or "micro" ETS. You and I are different because I've already had it, so maybe going back in it's better to avoid more cs to do micro. Obviously I'm not even sure what micro ETS means. Just curious if I should drive to TX to this doctor who specializes in doing this less invasive cut of T2 or if I should just go back to my surgeon here and just say "hey we messed up way back then go back in and cut the red face one!" Haha.

Also just wanted to say, I have never felt less alone than I do reading all these comments from people with the exact same issues as me. I know when fb is happening it's horrible guys, but just remember your pain is felt around the world. Secluded yes, but it's out there.

Share this post


Link to post
Share on other sites

also has ANYONE found ANYTHING that will stop or help with FEET SWEAT?! It's not ruining my life like facial blushing but it sure is annoying! Soooo excited to get ETS AGAIN (because it did wonders for my hands and pits.. Really hoping the blushing will be the same.. If only I had mentioned it 10yearsn ago when they were in there the first time!) someone said something in a comment farther up who's had it and it cured them "I'm just so happy I can be in any situation without the fear of blushing" and when I read that my heart started pounding. That sentence right there is my version of heaven.

Last thing: try glycopyrolate pills for cs

Share this post


Link to post
Share on other sites

Beastywild, sorry I know I was rambling. It was my first time commenting on one of these forums, I'm usually a silent reader, so I had so much to say built up. When I was 16 and had problems with my sweating I only told the surgeon about the sweating of my hands and armpits. I had no idea facial blushing was connected to it. So they told me they were cutting T3 and T4 I believe. I was researching just now and apparently most of the compensatory sweating comes from the T2 level being cut. To be honest it was so long ago. There is a chance they did cut it. But the three reasons that make me think they didn't are 1)I never said I had facial sweating or blushing, which is what that one controls, so why would they cut it? 2) if that one causes the most compensatory sweating, and I didn't say I had face sweat/blushing, I would think they would keep that one entact to spare me of that. And 3) my face still blushes all the time. I will be getting my records so I can find out for sure here in the next few days. Any insight is appreciated. I did read on the site some people who had all levels clamped without success by a diff surgeon, this surgeon redid and it worked. So fingers crossed for me :/)

Share this post


Link to post
Share on other sites

Hello Troubled, I had ETS done but was so young at the time, I had done little research and had no idea facial blushing was connected to the sweating problem. Now 10years later I'm considering getting Micro ETS to sever T2 level. I'm seeing so much positive feedback on here but I'm curious if this was just normal ETS that you had done or "micro" ETS. You and I are different because I've already had it, so maybe going back in it's better to avoid more cs to do micro. Obviously I'm not even sure what micro ETS means. Just curious if I should drive to TX to this doctor who specializes in doing this less invasive cut of T2 or if I should just go back to my surgeon here and just say "hey we messed up way back then go back in and cut the red face one!" Haha.

Also just wanted to say, I have never felt less alone than I do reading all these comments from people with the exact same issues as me. I know when fb is happening it's horrible guys, but just remember your pain is felt around the world. Secluded yes, but it's out there.

 

Hi FrenchFry,

 

I may be wrong but, I believe micro ETS is less invasive than the normal ETS procedure. The benefit of it is that there is less recovery time post surgery. In selecting a surgeon one of your primary concerns should be the number of ETS surgeries that person has performed. Dr. Neilsen who you've mentioned has done a considerable number of ETS surgeries. Also, you should feel confident (gut feel) in the surgeon after having had an in-depth discussion. Check any references you can find although that step is rather tough in that those references are not readily available. As in any field of expertise there will always be a small percentage of negative experiences which should not be of major concern. The larger percentages should be of concern. Surgeons are human like the rest of us.

 

I'd had T2 cut 5 1/2 years ago and the results of that is no blushing, no hand sweat, and 90% of the feet sweat (plantar) is gone. In turn I do have compensatory sweating which is a function of humidity first, temperature second, and physical activity third. It's largely manageable with only a few over the top sweating episodes in the summer. I say 'episodes' in that the compensatory sweating is not all day long, just when subjected to higher humidity and temperature and activity. As in the past days of blushing, one copes with the sweating by avoidance measures plus the summertime addition of wearing an undershirt.

 

Let me know if I've answered your questions and good luck.

 

Troubled 

Share this post


Link to post
Share on other sites

Troubled, thank you for your reply. I was actually given two contacts from his office of people who have had surgery for fb by him. They said he is amazing. I do have a good gut feeling after talking with him. I saw he has done over 2000 ETS surgeries which is also very encouraging. My records from my first ETS say T2 was cut.. So hopefully this time it actually does the job. Currently in the process of getting he surgery scheduled/paid for. I will definitely let you know when it's all said and done how it worked. Thanks again youve been a big help. Thanks for not forgetting about us who still have the problem. You're obviously a great person!

Share this post


Link to post
Share on other sites

Hi everyone,

 

I've recently had ETS surgery and was cut at the T2 level. I'm from the UK and researched so much before deciding to go ahead with the surgery. I found a very good surgeon who did the right side first, then 4 weeks later did the left side. I'm recovering from the left side now, I had the last one done 11 days ago to complete the package.

I didn't have any sweating problems what so ever before the surgery, in fact I hardly used to sweat at all. The reason for me having the surgery was purely to stop blushing. I've read all the comments in this thread and I can say you are not on your own when you feel like your life is on hold and you just can't do the things you really want to do. 

I suffered with facial blushing from the age of 11 and I'm now 31. I got bullied at school really bad and I think it started from there. It was uncontrollable and very annoying as most of the time I didn't even feel embarrassed yet I'd go bright red and the moment I felt it happening i then felt embarrassed and it made it go even worse. It was horrendous! 

One day I googled advice to help with blushing and saw different things like cbt, green tinted make up etc but then I came across an article about ETS and I just couldn't believe my eyes! I knew this was something that could change my whole world!

I went privately, from the date of my consultation to the date of my surgery was 9 days. The surgery lasts for around 30 - 45 minutes (doing 1 side at a time) and because I was having 2 separate surgeries I could go home that same day. I went into theatre at 3.30pm and I was discharged at 9.15pm. 

With the first side I woke up poorly with a sore throat and my chest really hurt on that side when I took a breath in, I could fill my lung up about half of its capacity. Once I got home and went to bed I propped my pillows up high so I wasn't lying flat and it was the most comfortable position and I managed to get a good sleep that way. 

By the end of day 2 my lung was able to completely expand and it didn't hurt anymore to breathe in. A few niggles from the key hole surgery but nothing to put you off.

Once I started pottering around outside of my house the impact of the surgery really showed itself! I went to the corner shop and when I came to pay at the till I could feel the left side of my face go extremely hot, the whole blushing feeling was happening yet on the right hand side of my face nothing! Not even a little heat, panic, no feeling, just nothing! I rushed out of the shop and got my mobile phone out and had a look at my face through my camera! The results were amazing, I knew at that point it had worked.

4 weeks later I went in for the left side done, this was much smoother than the first. Perhaps because I knew what to expect. I went to theatre at 2.30pm, woke up in recovery and was wheeled to my room. I was up and walking around my room within 1 hour, nowhere near as much pain in my lung as the first side. Had something to eat and was ready to go home at 7.30pm. 

When I had the first side done there was no CS at all, with the second side there was straight away. Before I'd even got up out of the hospital bed I felt wet on my back and when I moved it was wet. 

The only side effect I have is the CS, it only happens if I walk a long way in heat or if I'm layered up with too many clothes/coats etc. It's only on my back, in 2 patches, 1 on the lower of my back and 1 patch on the upper in between my shoulders and both right in the centre. It doesn't make me smell, its more wet than an actual odour and it dries up within 10 minutes of me sitting down or standing still, even quicker if I had a fan on me or in a cool room. 

I really wouldn't let the CS bother you, if you are that concerned about that particular side effect then you really must question how important your blushing problem is. There was hardly any doubt in me that I was going to be disappointed with the CS, I'd swap that for blushing any day! 

I haven't worn 2 layers yet but I'll give that a go, I've also seen sweat pads that you can buy and stick to your top so thats a possibility too. 

But you know what, I don't blush, I don't go bright red, I don't fear speaking to anyone anymore, I can have eye contact with people and my face doesn't light up, I don't have to look away or feel so uncomfortable anymore. It is amazing, it is life changing, 2 patches of CS which can be sorted with pads or a strappy top/vest under my clothes, I'd have that any day over the blushing. 

 

I feel amazing, relaxed, stress free, not on edge, not panicky, don't need to avoid anything, don't need alcohol (although that wasn't something I started) but life is amazing!

 

My advice, find a good surgeon, have a consultation with them, ask them where they will cut, ask them how often and how many ETS surgeries they've done and what success rates they have and when the next available date would be for your surgery and if you are happy get yourselves booked in. Don't listen to all these horror stories online, I read so many and it put me off for a while but did they have good surgeons? Even the best surgeon can make errors but as long as you've done your research and are aware of the side effects then go for it.

 

Its changed my whole world 

 

xxx

 

 

Share this post


Link to post
Share on other sites

Dear troubled and anyone else who has ETS for FB,

I had the surgery two days ago and to test if it worked I went to an AA meeting and I definitely went super red when speaking.. as usual. My question is when you had the surgery did it take awhile to work completely? See I have been in touch with a lady who had the surgery and she kept stressing that it could take awhile. It took almost 8mo for her, and I guess it took about 3mo for a handful of other people she was in contact with that also had the surgery. She said after the surgery she became more depressed than ever before and then slowly and and surely she saw results.

so I'm over here trying to stay calm like okay it just hasn't fully taken effect yet. But it's hard to shake that thought out of the back of your mind "what if it never works? This was my last option." 

Has anyone else seen while researching or know first hand that after the surgery it could take awhile to stop blushing at your usual triggers? Even my surgeon says that's very common because apparently there are still chemicals going through your body and sending signals to your face but this part of me wants to say "bull****!" I can't help it. This I'm sure is also coming from my previous ETS surgery 10yrs ago for sweating in which I woke up and it had worked completely right away.

just trying to stay calm and hopeful seeing as how this is completely out of my control now. Thank you.

Share this post


Link to post
Share on other sites

Hi FrenchFry,

     Thanks for your post but, hearing of your results of the recent ETS was not so welcome. The first thing you should do is to get a hold of your surgeons records of the ETS procedure. By having this record you'll be better able to narrow where things might have gone awry. By severing T2, T3, or T4 there must have been some positive results.  You want to find out exactly what was done and that's your first step. Secondly, if all seems normal from the procedure, then, hopefully, you may have some delayed reaction/response to the surgery (although I've not heard of this) and you'll have to wait it out over a couple months in order to see if the blushing has gone away. If it hasn't by that time you should get a re-evaluation from your surgeon....or preferably another ETS experienced surgeon. Facial blushing and sweating are physical conditions (mechanical, so to speak) of our bodies and with that in mind altering the nervous system as you've done should have changed things. 

In my own experience there was an immediate positive result both in no more blushing and no more hand sweat and substantially reduced foot (plantar) sweat done by cutting T2 only That remains to this day which is 5 1/2 years since having had ETS. Now, compensatory sweating is another story. It's up to a 10 in summer months and 1-2 in winter months. But, I'm grateful...

Troubled

Share this post


Link to post
Share on other sites

I had my surgery done in Bolton, England by Mr Onwudiki. I would highly recommend him. 

I wasn't told the blushing would take time to stop, as far as I was aware its an instant thing. Sorry I can't be of any more help. What T level did they cut? Would you consider a re do perhaps?

Share this post


Link to post
Share on other sites

How are things now Troubled? Would love to hear another update 

Hi Guys,

Thanks for the update request. As all of you have read, I'd had ETS back in early 2010 for the elimination of facial blushing and with the hopes it'd correct some of the sweating. It did accomplish all of that. T2 (only) was cut. 

 

Currently, at 6 years out, I still have the compensatory sweating in an unchanged degree as discussed before which is in the late spring to early fall months. I'd rate the sweating during those months at an average of 6-8 on a 10 (worst) scale. At times the sweating will rank a 10 which means it 'bleeds' through the T-shirt and outer Polo shirt. This may happen once every week to 2 weeks. 

 

When the sweating occurs it's not all day, just during those times where there is high temperature and humidity. Humidity is the key negative factor in all of this. Dry heat is not too bad. 

 

There is absolutely no blushing with no feeling of 'am I going to blush' whatsoever.

 

Having had ETS was the best thing I'd ever done for myself. The feeling of freedom, the increased socialization, the relaxed way I 'attack' each day, it's the best.

 

Sweating? well, I during those 10 ranked episodes I just tell openly to those around me that 'this is something with which I'd been born'. 'Now, what were you saying?'.That diffuses the situation completely.  

 

Anybody have any questions?

 

Troubled

 

Share this post


Link to post
Share on other sites

Thanks troubled, I'm so pleased you replied and kept us updated. 

I had ets 8 months ago for fb and so far I'm absolutely certain I made the right decision. I have the summer months coming up though so will see how it goes. Are you from the uk? 

I donr know about you but for me it's calmed me right down. I just don't feel panicky anymore and it gives me the confidence to actually see a conversation through rather.l than get up half way through because I knew a blush was coming on. 

Thank you once again for updating us, it means a lot X 

Share this post


Link to post
Share on other sites

Hello

It's my first post in this forum.

I apollogize for my english - it's basic , but I hope that You will understand sense of my posts.

I'm glad that I can read about people  who are satisfied after ETS surgery.

Now I'm 30 years old  guy who live with facial blushing problem - everyone knows what it means...

I try to live normal , I have beautiful wife and one year old daughter. 

Yes my daughter - I thinkt that I want to change my life for her , to be a best father on the world.

Please tell me wheter anyone had heard about dr. Stefaniak from Poland , from Gdansk clinic?

He make ETS with clamp of nerves. I think about make ETS to stop blushing - now I life on 50% or less of my capabilities.

Befree - You had ETS surgery by  Mr Onwudiki  - can You tell me how expensive is surgery in England? Maybe You have his e-mail adress ?

 

I wish You all only a good time without FB and sweating .

Best Regards from Poland

 

Share this post


Link to post
Share on other sites

Hi 30_yearsFB

 

Hope you're well. The consultations are £120 each and I had 3 of them but the last one is free as part of the surgery cost. The cost for surgery was £5100 ish, i can't remember the exact amount but this seems about right. He cuts the right side first, then 4 weeks later if you are happy to go ahead with the second side he will do that. It also gives you the opportunity to not carry on with the second side if you are finding the side effects difficult with just 1 cut. 

Contact details:

Mr onwudike

The Beaumont hospital

Old hall clough

Chorley new road

Lostock

Bolton

BL6 4LA

This is the main reception number 01204 404404

This is to book a private consultation so I'd advise to ring this number first, if no answer then phone the above number and they will transfer you:  01204 404446

Mr Onwudike email address: madu.onwudike@rbh.nhs.uk

 

I can very much recommend him, I'm about to update some photos on 'my story' post x

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...

×
×
  • Create New...