Jump to content
Befree

My story

Recommended Posts

Hi everyone,

 

I've commented on other posts but this is about my story.

I had ETS 4 months ago at a private hospital with a very skilled doctor. 

Prior to ETS I was a wreck, it got so bad that I feared opening the door to the post man due to severe blushing for absolutely no reason at all! So humiliating!!! Basically my life was not fun, I was existing, not living so I did a lot of research into the surgery. It wasn't something I rushed and I was fully aware of all the side effects. 

I went into hospital with a pair of tinted sunglasses because I was willing to trade severe blushing for a droopy eye! Thats how much I needed this surgery and I knew it was my last resort.

So, my doctor cuts the right side first then 4 weeks later cuts the left if I was happy to carry on and was ok with the results. 

I have cs on my back but it only happens when I would normally sweat before ets, I can wear layers and go walking and have the heating on, sit infront of a fire, have my thick duvet over me in bed, not a problem. The cs doesn't bother me as I consider it mild and I've traded it for blushing. I no longer blush, I don't have the feeling of it starting up and my anxiety has almost gone. Its had such a calming effect on me, in situations where I'd panic it just doesn't kick in anymore. 

I'm able to go out for meals and sit face to face with people now, I can stand in a queue and not feel exposed, I've been to my childrens school plays and really enjoyed them because the fear of blushing has diminished and I can now speak to all the parents at school.  I don't need a dull lit room to hide the red face!!!

So cs is one of my side effects and as I've said above, I consider it minor. I did go numb under my armpit and around my nipple/bust area but thats gone back to normal now. My hands were dry and warm straight after surgery but now my left hand is colder and can feel clammy (Not as much as before ets), when I eat spicy food the right side of my face, neck goes clammy, somehow still having the ability to produce mild sweat. I've had a few instances with flushing when I've over heated, my cheeks got a little rosy but I would go like this before ets and more intense, especially after having a hot shower. I feel like when this happens it goes down much quicker than before my surgery. 

I used to use a green tinted moisturiser/foundation and I still put that on, its not needed but my face looks so pale and I love it!

So far, I am totally happy with the results, even more so after I started to be able to sweat mildly with spicy food and my hand going cooler and clammy like it did before ets, its making me feel more like I did before the surgery but minus the blushing!!!

My brain is still intact, no fuzziness or memory loss, no hair loss, no dry skin where I'm having to apply anything different than I did before, my nails are still strong, I haven't put weight on and my bed does not go wet with sweat. Those are just a few things I've read previously from other posts.....

Oh and my heart rate, that has gone down to around 60 bpm now but like I said, its calming me down and my heart rate was way ott before!

Thank you for reading and I will continue to update my story on this post

Share this post


Link to post
Share on other sites

I definately can relate to some of your points pre ets befree...blushin when door bell rings and went to childs school play few days ago, i was fine for first 10 mins as i felt as if my body was still cool from the walk up to the school. But after that i felt myself "go" a couple times especially when i seen at old friend sitting very close to me. (The fear of him startin a conversation in the roasting hot room set me off).

Im waitin on a consultation for ets as it stands at the minute.

 

 

Share this post


Link to post
Share on other sites

just a little update on myself..

I got an appointment date with an thoracic surgeon (just for a consultation).

Its not too far away thankfully,the 2nd of feb. This is the exact date I met my wife 14 years ago, I find this a little weird but a good weird. Maybe a sign from the big man above thats it gonna turn out just fine.

Share this post


Link to post
Share on other sites

Good luck Steven, have a good think about questions you want to ask before your appointment. 

Update for me: I've noticed how pale my face and neck/upper chest looks recently. When we are in 'normal' temperature rooms with the heating on at the moment etc my face is so pale! If I get too hot my cheeks do flush a little but less than they did before. As for the blushing, still can't believe its not there, the feeling isn't there, I'm facing upto life finally and looking people in the eye for longer than a few seconds! And I still have the calming feeling, the only way I can describe it is as though I've been disconnected slightly from being fully conscious about every single little detail in life, or like when you take stronger pain killers and your kind of not as bothered or aware of all details around you. Its amazing and I'm still so happy with the results.

Thank you for reading my story and I'll continue to update, especially in the summer months (I'm yet to go through July, started surgery in August last year so the very peak of summer will be interesting) xxx 

Share this post


Link to post
Share on other sites

Hi everyone,

 

Just a little update from me:

Ok so my left hand goes as cold as it did before the surgery now, if I'm cold the only place thats still warm are 2 of my fingers on my right hand. Temperatures have been minus 1 here and those 2 fingers are still warm. 

I have the ability to sweat on the right side of my head, neck, chest when I'm working out or eating spicy food. The left side of me goes flushed on my cheek instead. It starts next to my ear and works its way sideways to mid cheek. Once I've cooled off it goes immediately. 

My under arms, the right can sweat more than the left. Both have the ability to sweat (not as much as before surgery but enough to feel that little has changed here)

My back barely flares up with sweat now, when it does its not that obvious and dries up in 10 minutes. 

As for my stomach/legs etc I haven't been sweating there except once when I had a really nasty cold. 

My face is still pale all of the time unless I'm too hot, then it will go flushed slightly. Nothing to worry about and far far far less than before.

As for the blushing, I'm yet to feel a blush coming on. I'm 6 months post op now and so much calmer and happier than I was before.  

I'm trying to upload a picture of my top, this was from a 2 hour walk and this is as bad as it gets for me. I have to really work out for it to go like this and its nothing another strappy top or loose cardigan wouldn't hide anyway. Wanted to be honest and show you 'my worst' and also my updated information.

Any questions about my progress so far, I'd be happy to answer them.

Thank you for reading :)

Share this post


Link to post
Share on other sites

Hi , does this site have problems continuously for others? Always down or something with the IP?

 

glad your doing well befree  was it done on NHS?

 

ive had a hospital appntment with mine i had more blood tests and 2x 24 hr urine samples one with acid in it for some reason... A wk later i recevied a letter asking me to go back to have a ultrasound on my kidneys....  Im guessing they found something in urine....

 

anybody else been down this route?

 

ive been really down in work with this and feel like just walking out because i am stressed all day about it with team meetings ect it really is a dissability

Share this post


Link to post
Share on other sites

Thank you Liamd7, I went private to have it done but its also done on the nhs too where I went. 

This site has been down twice since I joined, I think its something to do with the owners not paying the bill lol

Have you asked for ets surgery and they are now testing you for other causes? I didn't have any of those tests done. Sometimes I feel like doctors look for other reasons why people blush rather than seeing it as an actual condition in itself thats had very little research. Nothing would have cured me, I'm 99.9% certain of that. 

I went shopping today and again, another reminder that my surgery was the best decision for me. Stood there in queues, busy shops, struggling with all my bags and packing my items into them in time. I felt amazing, 6 months ago you wouldn't even see me in a shop or getting the bus into town. 

 

Share this post


Link to post
Share on other sites

Happy for you Befree ?

What is your age if you dont mind me asking?

 

Bolton is just around the corner from me , i have asked briefly at the very start of my blushing and they said it isnt something the surgery normally puts in for, but next time i will ask again and say i could pay for it on finance or is there any funding available for it on nhs

Share this post


Link to post
Share on other sites

I'm 31 now, eek feel old lol but I put up with it all these years and finally found this surgery. Mr onwudike is amazing, he was so caring from start to finish and he totally made my life so much better. I really can't thank him enough for how he's made me feel. If you google him it comes up with his background.

ill keep updating my progress, see how I feel in peak summer time and also I'm going to Florida for 3 weeks in July so that will be an extreme test lol. Looking forward to updating about that experience with the heat over there ??? 

 

Share this post


Link to post
Share on other sites

Glad to be back on the site, I've had problems accessing it recently too!

Pleased things are going so well Befree.  :-)  I've had quite a bit of acupuncture (and occasionally Chinese cupping with it) over the last 14-28 months for the post-surgery side-effects, but to be honest I haven't noticed any changes at all so have now stopped.  The only good thing is that I've managed to lose about 20lbs in weight over that time, so perhaps the treatments helped my energy levels, but I get pretty much the same benefits from Tai Chi, and those DVD's are about £3 each from eBay rather than spending £25-£30 each time on acupuncture and / or cupping, lol.  I'm not knocking them though, because I'm a big believer in Chinese medicine, but I guess with it been 15-17 years now since my operations it's just been too long.

Share this post


Link to post
Share on other sites

Thanks Liamd7, I am a little panicky about florida with the extreme humidity they have over there but we'll see how it goes. It will definitely test me and will probably be the hottest I'll ever get. 

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

Share this post


Link to post
Share on other sites

Befree I am so glad you are happy with the results! I am admittedly jealous of you. I can just imagine how freeing and calming having blushing gone from my life would be. Thanks for all of the updates, I only wish I could find a kind and compassionate surgeon here in Massachusetts. 

Share this post


Link to post
Share on other sites

Good luck Fedup77, I hope you find the right surgeon soon. I know what you're going through and its horrible. Noone can fully understand unless they also have the same condition. I was trying to explain to my husband its not just the bright red face and people around you wondering why you've turned so red (mainly with no explanation) but its also the whole build up, the anxiety of it happening, having to talk to people and look them in the eye longer than a few seconds and god forbid we ever get put on the spot geez. 

I hated anything social, even my childrens parents evening because I had to sit at a table with me on one side and the teacher facing me on the other and there was no way of hiding. I used to go red even answering the door, infact I'd already turned red before i even got to the door! It was absolutely horrendous and noone should have to live like that. It was no life :( 

Liamd7 I'm wondering if your doctor is trying to eliminate all the possible reasons of blushing first before looking into surgery for you. I think some doctors may think something else is causing it, they don't understand at all.  

Share this post


Link to post
Share on other sites

A little update:

I was out today with the sun shining on me and I knew I could still sweat from my right side (face, neck, etc) but wasn't sure if the left was the same. Well today it definitely happened. My head on the left side was clammy and damp so now I know I do have the ability to sweat all over, its not as much as the right side but its there. 

An absolutely fantastic job from my surgeon and I came home feeling like I've won the jack pot. I've had my problems fixed and haven't had to sacrifice too much. 

There was a lady at the bus stop with a little boy in a pram and an old lady started talking to her and she blushed and hardly spoke back. Instantly I knew why and even though I felt sorry for her, it was another reminder of how fantastic I feel right now. 

Share this post


Link to post
Share on other sites

Befree that's pretty dang awesome. Sounds like your side effects are just a slight change in the location and severity of sweating at this point. Is that accurate?

I can't remember where you are located...who was your surgeon and did they clamp, cut, do one side at a time, only do T2?

That poor blusher at the bus stop. So hard to know the struggle first hand. 

Share this post


Link to post
Share on other sites

Thank you Fedup77, that sounds about right yeah. I was so worried before I had ets because I'd watched videos on youtube of people literally dripping all the time. Perhaps they had sweat problems though. 

I'm in England UK and my surgeon was Mr Onwudike. I was cut and I had one side done first, then had to wait 4 weeks to see if i wanted to carry on and have the second side done. I was also only cut at T2 on both sides. 

There isn't enough success stories out there, its so much easier to find the bad than the good x

Share this post


Link to post
Share on other sites

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

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...