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scarface

Scheduled for ETS Redo on 06/16/17

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1 week update

Still no CS anywhere.  Hands are dry and I use lotion here and there but it is not a big deal.  

No blushing at all.  Anxiety-related blushing is completely gone as well.  

I still have some soreness and have developed a dull pain in the center of my upper back in the spot where the surgeon performed the cauterization.  It appeared 2 days ago and is almost gone today.  

Skin on my chest and armpits is still completely numb.  Sensation seemed to be returning a few days ago but I'm not sure if it is anymore.  The scars are healing very slowly and still look ugly.  In addition, I have also noticed a very strange "rainbow" type impression across my chest spanning from armpit to armpit and the muscles in my chest seem to constantly be in a state of slight contraction.  When I try to stretch my chest out I feel some resistance in my chest muscles that wasn't there before.  I have not seen this or heard of it anywhere on any ETS website.  I'm really wondering what the hell happened to cause this and am hoping it goes away.  If I had to guess I'd say it is related to excessive puncture holes made in me and excessive use of the cauterization tool.  

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Overall, I am very pleased with the way my body responded to the sympathectomy, but I am not happy with the extra puncture holes, chest numbness, and now this arch impression across my chest. I am concerned as to why I was in the hospital for 2 days after surgery with drain tubes in my chest.  I bled about 75mL of blood post-operatively on each side.  Perhaps that's common for redo procedures, but every ETS video I see there is no bleeding when the operation is done and patients get discharged same day.  So, this leads me to believe that perhaps a blood vessel was cut by accident or something similar went wrong.  It may be the case that redo cases are more problematic and I am wondering if I would of been better off going to someone like Dr. Nielson who is an ETS specialist.  

Edited by scarface

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It looks like where the tools for operating were inserted, some peoples skin/tissue  are more sensitive than others.

Btw do you think when the clamp fell off that the nerves re-grew and the blushing came back?

And are your symptoms such as sweating the same as they were the first time round?

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Since the nerves were never cut in the first place, I'm not sure you can say they "grew back".  If the clamps did indeed fall off, then most likely the nerve regained enough life to continue functioning again.  

Yes, my symptoms are very similar to the first time I had ETS.  The biggest things the first time were numbness on part of my chest and on the back of my left arm, and slight horoners syndrome but this time I don't have horoners sydrome at all.  Instead I got extra numbness this time around.  Hopefully it will clear up.  I feel like mentioning that this may have been avoided if Dr. Port went in through my previous incision sites like I asked him to (he totally disregarded this request and just punched brand new holes in me).  

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Hey Scarface

Assuming you had Redo ETS because the clamps didn't work the first time round? I had ETS 4 years ago, T1 and T2 cauterised and I do t blush as intensely and for as long as before but is still do blush :( what are the biggest risk with re-do surgery? I'm worried the op doesn't really work for blushing on me - it cured my reynauds in my hands but I def still blush! 

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Hey Scarface

Assuming you had Redo ETS because the clamps didn't work the first time round? I had ETS 4 years ago, T1 and T2 cauterised and I do t blush as intensely and for as long as before but is still do blush :( what are the biggest risk with re-do surgery? I'm worried the op doesn't really work for blushing on me - it cured my reynauds in my hands but I def still blush! 

As it was told to me by Dr. Port, the biggest risk with redo ETS has to do with lung adhesions.  The surgeon has to spend time cutting the lung tissue away from the chest wall and it is possible to puncture a hole in the lung when doing this.  He said in this case I would probably have to stay in the hospital an additional 2-3 days.  Doesn't sound so bad.

I'm very sorry to hear that you had both T1 and T2 cauterized and you still blush.  On the one hand I would feel heartbroken, but on the other hand you are forced to find another way forward.  My decade and half of blushing hell certainly built some character in me.  Have you tried medication?  The reason you may continue to be blushing is that you may have Kuntz nerves that were missed.  Seriously I'd talk to Dr. Nielson about it and see what he says. 

Edited by scarface

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Scar I know in an early post you mentioned about compensatory sweating, how would you of dealt with this if it was a side effect? 

If it had happened, and it still might, I told myself that I will live with it the best I can.  I have read some people have successfully managed CS with medications like Dri-Clor so I would try medications.  I was also planning to move to a very dry climate like Texas, Arizona, or Colorado, somewhere where your sweat evaporates quickly due to the low humidity.  In addition, I would try to dress down as much as possible to allow ventilation of my skin and would just stay in cool climate controlled rooms as much as I can.  There is also known stimulants that make the sweating worse like caffeine, so I would avoid those types of triggers. 

I understand that for some unfortunate people, no matter what you do the CS is uncontrollable, unmanageable, and unbearable.  So I think it is important to mentally prepared yourself for this possibility before getting the surgery done.  That way when it happens you aren't shocked and disappointed.  

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Day 10

I experienced severe CS 2 days ago.  I was working making some repairs on my car and it was very hot and humid outside.  I was sweating pretty bad from my lower back, trunk area, and crotch.  The sweat bled through my clothes and my shirt was visibly wet.  When I finished and went inside to change, my underwear was totally wet too.  I could not believe how bad the sweat was as I have never sweat that much.  I was wearing heavy jean pants and was getting flustered during the repair so I think these were large contributing factors.  I took a cool shower, calmed down, and was dry the rest of the day and haven't had any CS since then.  

My hands are very very dry.  My skin is white, chaffing, and it is uncomfortable to touch things.  I have found that coconut oil helps better than hand moisturizer but I have only tried 2 different hand moisturizers so far.  As of now I keep a jar of coconut oil in my bathroom and just put a little bit on my hands before going to work.

Still no blushing.  I had some definite blushing-inducing moments recently and I didn't even feel a blush coming on.  I have to be honest, it is very very liberating.

Chest is still numb and I still have the strange "arch" impression going across my chest from armpit to armpit.    I am still angry that Dr. Port made new incisions in me when I asked him very clearly not to.  This was not even an hour before surgery.  There is no excuse for this on his end.  He flat out just didn't respect my request.  

Edited by scarface

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Day 15

My body is still healing.  The numbness in my chest is very slowly subsiding but is still quite present.  My scars are getting smaller but they will probably remain conspicuous for several years to come due to their locations and the size of one of them.

I definitely have CS on hot and humid days when I am outside exerting myself.  We are having temperatures in the 80's right now and when I am out and about my trunk, lower back, and legs can get severe.  My underwear gets very damp but my pants don't bleed through.  My shirt however can bleed through around my stomach and lower back area.  It is not a huge deal and it is manageable, but it is bothersome and quite strange having only the bottom half of your body sweat while the upper half (from nipple line up) is totally dry.  However, as soon as I stop exerting myself or go into a cool air conditioned room my sweating stops very quickly.  Also, I learned a little trick which may seem funny: since my hands stay very dry, on hot days I can just reach under my shirt at any time and touch my stomach to quickly moisturize my hands.  I don't have to worry about carrying around moisturizing creams.    

I still have a strange feeling that my chest muscles are in a slight state of contraction but, like the numbness, it seems to be gradually going away or perhaps I am just getting more used to it.  I also still have the "arch" impression across my chest although it too seems to be very gradually fading.

No blushing at all.  Mentally, I am finally at peace with myself since I am free of the blush related anxiety.  We had a meeting at work on Thursday this week at 4pm.  Normally, I would spend the entire day dreading that meeting.  However, I had no such dread.  I was barely even thinking about the meeting.  When it was getting close to 4pm I calmly just went to the conference room and sat down and was totally relaxed.  Attention was brought to me 1 time and I handled it with total comfort.  

Overall, I am satisfied so far.   

 

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Day 30

Arch impression across my chest is 95% gone.  Chest numbness remains but I'm used to it now.  Scars are still big and noticeable and I am not satisfied about that.  Dr Port could of done a much cleaner job.  

Hands are still dry.  Once thing I should point out is that the dryness isn't just on the superficial outer layer of the skin.  The dryness is more of a dehydration of the entire thickness of the skin.  Sometimes I look at my fingertips and they slightly pruned like you would see after spending too much time in a swimming pool.  So this tells me that my body is just not delivering much moisture to my hands at all.  I am getting used to it still but obviously I would rather this wasn't happening.  I have found the Vitamin E oil stays on my skin longer than the coconut oil so I have been using that more often.  Hand moisturizing creams are ok but the ones I have tried I've had to apply very often because they wear off quicker.  

The sweating hasn't been too bad but then again that may be because I have avoided being too active since it is hot outside.  I did have an episode last week where all I did was walk to the grocery store a few blocks away and by the time I got there my underwear was wet from moderate to severe sweating from my crotch/groin/butt.  I was not happy about this.  Basically every time I have gone outside and exerted myself my lower body started to sweat more than I think is acceptable.  Because of this, I agree with the notion that a more appropriate term for this is "reflex hyperhydrosis" rather than "compensatory sweating".  The reason I say that is that there is no way I am sweating an equal amount on the lower 2/3 of my body now than I was on my entire body before surgery.  The amount of sweat on my lower body is more than the amount of sweat all over my body was before surgery.  The good news is that my sweating stops immediately if I cool myself off.  Also, I have noticed a big decrease in sweating in my groin/crotch/butt if I don't wear underwear and this also seems to help with the sweating from my stomach and lower back area.  So, I just haven't been wearing underwear for the last week and it hasn't been as much of a problem when I walked somewhere.  Not wearing underwear keeps the area cooler and allows better ventilation.  Another thing I am going to try is losing bodyfat.  Right now I would estimate I am around 15-16%.  I will try to get down to about 10-12% and see if there is any improvement.  Avoiding coffee also seems to help a little but I haven't given it up yet. 

My mentality, energy levels, metabolism, etc. is all the same.  I feel exactly the same except for the problems listed above.

One study I found recently showed that CS was much lower on ETS patients when the procedure was done on one side only, and then the other side was done 4 months later:  This study was for patients with hyperhydrosis, not blushing.  However the T2-T4 ganglion were cut, so i'd imagine blushers would have similar results since T2 is targeted for blushing.  This newer technique seems to be an improvement in ETS surgery.  It will cost more to have 2 separate operations, but the rate of CS was much lower.

As for me, I am hoping my dry hands and sweating improves.  I have found a handful of studies which said that about 50% of patients report that their dry hands improve with time, and that some patient's report an improvement of sweating with time and that generally speaking, the first summer after ETS is the worst one.  All I can do at this point is keep a good attitude, stay healthy, and keep my fingers crossed that I see improvements.

I was hoping I'd have mild side effects again like I did the first time I had ETS 8 years ago but for some reason my body reacted more aggressively this time around.  The problem is that, much like the blushing and the avoidance techniques from social situations, I am now still using avoidance techniques with regards to hot weather and not exerting myself and I also find myself avoid touching certain things like paper because the dryness is uncomfortable.  Overall, I'd say it was a pretty even exchange in terms of trading blushing for other problems.  

Would I suggest ETS to others?  3 weeks ago I would say definitely yes because my side effects were low.  Now, I would say that it depends.  When I was in high school and college, essentially a point in life when I was forced to be in very difficult social situations every damn day and was frequently forced to speak up in front of my peers, then not blushing would have been a total godsend.  But where I am in my life now, the blushing was not nearly as big of a problem.  The worst was behind me.  Sure, it sat latent inside of me and would rear it's ugly head whenever the situation provoked it, but overall I was at a point in my life where things were more on my terms.  What I mean by this is that I was no longer being forced to sit in rooms and interact with people, do presentations, etc.  I was basically going to work, keeping my head down and doing my job, and then going home.  When I would go out and about town, my blushing wasn't bad at all because I felt free.  One of my goals in my life was to be an entrepreneur, and should I work towards this and succeed then life would essentially be on my terms 99% of the time since I am no longer an employee forced to do the things my employer tells me to do.  

So then why did I get ETS?  The main reason I got the surgery done was to be a guinea pig.  I had resolved several years ago that I would never have children due to this condition being hereditary and I could not in good conscious bring someone into this world knowing how badly they would suffer from blushing.  But ETS was an opportunity for me to justify having children.  I reasoned that perhaps the genetics for blushing would not be passed on to my kids, and even if it was, then if I responded well to the ETS then more than likely my children would respond well to ETS too and so having children was ok for me.  Due to how my body responded I am not so sure anymore.  Furthermore, I'm now thinking that our understanding how genetics combine and express themselves is too weak for my conjecture to really hold much weight.  Regardless, I am hopeful that a better solution will be found.  I also think it would help my kids tremendously in dealing with this problem if I were to be a supportive parent since I know what it is like.  I also believe in the fighting human spirit to prevail despite the issues we have.  For these reasons I am going to stay open to the idea of having children so long as I met the right woman to start a family with.  As I said I don't think ETS is a long term solution for us blushers.  The procedure needs to be improved to minimize side effects to very low levels in order for me to agree that it is a good solution.  I am very curious if the nerve really needs to be cut at the location of the T2 sympathetic chain.  I have tried to find pictures tracing the nerve AFTER the T2 ganglion hoping to spot perhaps a point where it bifurcates, with one going to sweat glands and the other going to the blood vessel capillaries of the face, but have had no such luck.  If something like this bifurcation could be found, then maybe the nerve going to the capillaries could only be cut and we'd see a tremendous decrease in side effects.  As it stands now, we are taking a very generalized approach at stopping the blushing, essentially burning down half of a forest to kill just a few trees we want to target.  The only other solution I can think of would be to find a way to genetically engineer people to not have this problem.  I see much difficulty in this because blushing is a very complex problem.  It is perhaps as much psychological as it is physiological and finding a specific genetic blueprint for the patholigica/excessive blushing phenomenon would be hard.  Perhaps we could just target the blushing gene altogether then and find a way to delete it from our genetic profile.  I don't see much harm in this.  I think there are people out there who go their whole lives never blushing and they are perfectly normal.  Everything I have found about genetic research into this has been aimed at hyperhydrosis, but us blushers will hopefully piggyback somewhat off of their findings.  

I will be checking this forum every once in a while to see if anyone has questions or contributions to the discussion.  My next ETS update probably wont be until I am around the 3 month mark.  

Edited by scarface

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Both my parents were never blushers. Nor any of my relatives. Yet there I was stuck with it. Just unlucky, I guess. I suffered terrible mental problems due to blushing. I wouldn't have kids so as not to inflict the torture on them. My face didn't just go red, it would go purple. The older I've got, I don't blush as much and Efexor helps a lot. I've read about actors who don't particularly like lots of "eyes" on them. Difference is, they don't blush and therefore their anxiety is much less. In this modern world, what with work etc, it's hard to avoid socially awkward situations. Blushing badly is nightmarish. Fully understand people would consider ETS. Years ago I would have had it done, if it had been available. On the plus side, my partner understands what I've been though. She's been a huge help to me.

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Great update, mate! 

As for me, I am hoping my dry hands and sweating improves.  I have found a handful of studies which said that about 50% of patients report that their dry hands improve with time, and that some patient's report an improvement of sweating with time and that generally speaking, the first summer after ETS is the worst one.  All I can do at this point is keep a good attitude, stay healthy, and keep my fingers crossed that I see improvements.

This is a great attitude to take. It's the best you can do. I also have read about people having a "reaction" with severe side effects after the surgery, but that it does improve over time. Especially the dry hands. 
 

I also have had similar feelings as the once you describe, like not wanting to have children so that they may have this, etc. 

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Hi everyone..I'm new here..I had ETS surgery about a year ago and I still suffer from facial blushing unfortunately. I'm still glad I did it so I don't have to wonder what if.  Hopefully it will work for some of you though. :)

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Day 101 (~3 months post ETS)

I've seen a considerable improvement with my dry hands.  Specifically, the dryness is still there but I have gotten used to it.  I can now write on paper and grab things without even noticing the dryness.  I have adapted to it quite well.   

Chest is still numb.  I think it's safe to say at this point that feeling will not be returning.

Not a single blush since the operation.  I am very happy about that.  My anxiety levels have been at an all time low and subsequently so has my level of stress in daily life...I can almost feel the difference with the lack of cortisol (stress hormone) circulating in my blood.  No joke, I am much more easy going these days.

Scars are very slowly healing but are still prominent.  I continue to be dissatisfied with Dr. Port's work from a cosmetic standpoint.  I feel self conscious about the scars and about doing things like taking my shirt off at the beach or when with a girl.  It makes me mad how little consideration he gave to doing a clean job.

The "arch" impression is completely gone.

The CS, or reflex hyperhydrosis as I like to call it, is still a problem in hot weather.  Today it was 90 degrees and my sweating was severe.  All I did was step out to my car and take a drive to the store and then walk across the parking lot.  Within 15 minutes of being outside, sweat was dripping down my back, stomach, crotch, butt, and legs.  My underwear got pretty soaked.  From observation over the last 100 days, I have concluded that 80 degrees is my "trigger temperature" where I start to notice excessive sweating.  Any hotter and the sweating gets worse, any cooler and the sweating drops off drastically.  This is by far the biggest drawback.  I had planned to cut down on bodyfat to 10-12% but have been busy and have not be able to go to them gym.  It is still on my to do list though and I will update with results when it happens.  

  

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On 9/28/2017 at 6:07 PM, brunette22 said:

Scar face, would you recommend getting clamps and then cauterising of going straight in with cauterisation? 

I've thought about this and have changed my mind a few times.  As of now, my opinion is that if I could go back I would of just gone straight to Dr. Nielson and had Micro ETS the first time....very minimal, almost non-existent scarring and the cauterizing completely severs the nerve.  The clamping is good theoretically due to reversal possibility if the side effects are bad.  An in fact for me my clamps fell off by themselves and I did have a full reversal.  But, that only meant that I had to go through the entire ETS process again, had to pay money for the surgery again, and this time the procedure was more risky since it was a re-do.  My suggestion is to EXPECT that you will have bad side effects and THEN make up your mind as to whether or not the trade off is worth it.  If the answer is yes, then get ETS with cauterizing and preferably with a surgeon who will do it with the Micro/Needlescopic approach.  If it's not worth it to you, then don't get ETS at all.  

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17 hours ago, brunette22 said:

Okay I see what you're saying. Did your heart rate decrease after surgery? 

I measured my heart rate several times before surgery and it was always between 70-75.  Post operatively when I was in the recovery room my HR was consistently between 65-69 each time the nurse checked it. 

And now that you asked, I just checked my heart rate a few times and it was 54-56.  So it does seem to have dropped.  

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6 hours ago, brunette22 said:

Okay, doesn't the HR contribute to energy levels and metabolism?  I am uncertain about this because one surgeon said no the other said he's not sure 

Just to answer your question. 

For me it didn't have any effect on my energy level and the metabolism either. Nothing noticeable anyway. 

And mine became as low as 35/38 when resting.

Male 36 / T2 clamped. 

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