scarface

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  1. scarface added a post in a topic Scheduled for ETS Redo on 06/16/17   

    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.  
  2. scarface added a post in a topic Scheduled for ETS Redo on 06/16/17   

    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.   
     
  3. scarface added a post in a topic Scheduled for ETS Redo on 06/16/17   

    No.  I never really had a problem with facial flushing.  Only blushing.
  4. scarface added a post in a topic Scheduled for ETS Redo on 06/16/17   

    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.  
  5. scarface added a post in a topic Scheduled for ETS Redo on 06/16/17   

    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.  
  6. scarface added a post in a topic Scheduled for ETS Redo on 06/16/17   

    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. 
  7. scarface added a post in a topic Scheduled for ETS Redo on 06/16/17   

    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).  
  8. scarface added a post in a topic Scheduled for ETS Redo on 06/16/17   

    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.  

    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.  
  9. scarface added a post in a topic Scheduled for ETS Redo on 06/16/17   

    Just blushing
  10. scarface added a post in a topic Scheduled for ETS Redo on 06/16/17   

    Day 5
    My chest tightness is pretty much gone.  
    Soreness in my armpits is almost gone.
    Feeling is slowly starting to return to my chest skin.
    Mild CS on my feet again today at work but my socks didn't get wet.  Honestly I had mildly sweaty feet before my ETS.  Right after my operation I had dry feet for the first two days so I thought that was the new normal, but unfortunately it has returned to about baseline level.  So I'm not even sure if it's fair to call it CS.
    No CS anywhere else.
    Dry hands again and had to use lotion.  
    Mentally I feel totally normal.  
     
    From here on out I'll probably update once a week, once a month, or if I experience new or increased symptoms.  If anyone has questions just ask and I'll reply.  But basically I was a pretty lucky patient and have very little side effects from ETS thus far.  
  11. scarface added a post in a topic Scheduled for ETS Redo on 06/16/17   

    I'm not sure how much it costs yet.  I haven't received my bills.  Prior to the surgery I spoke with my insurance provider and they told me it is covered and that Dr. Port has contracted rate.  They also told me my maximum out of pocket was around $1100.  So, i'm assuming my personal responsibility will be around that much.  But again I haven't received my bills yet so I don't know.  I will update when I get them.  But how much you pay will not be the same as me since it depends what surgeon you go to and how much of it your insurance will cover. 
    I am about as sure as I can be.  I know what a blush is, believe me.  If I am blushing, then I'm doing so without feeling any burning sensation in my face and without my mind going into a panic attack.
  12. scarface added a post in a topic Scheduled for ETS Redo on 06/16/17   

    Day 4
    I got discharged from the hospital last night.  On the drive home my feet felt pretty hot but I didn't feel sweating.  It was about 80 degrees and humid outside too.  It felt good to sleep in my own bed again when I finally got home.  
    On my way to work this morning my feet again felt hot and this time I noticed mild CS on my feet.  There seemed to be a very thin film of sweat on them most of the day.  Might have something to do with the fact that I wear leather shoes which are not breathable.  When I took my shoes off my socks were hardly wet...just very slightly damp if anything.  Overall not an issue at all but hopefully this doesn't get worse.
    No CS anywhere else on my body at all.
    My hands were very dry today.  I had to put moisturizer on 2 times.  I'm hoping they don't stay this dry all the time as it can be uncomfortable.
    Most of the skin on my chest is still completely numb.  A few spots seems to be getting some feeling back.  I will see what happens over time.  
    NO BLUSHING.  I had what would of been another blushing inducing moment at work today and I was able to stand there calmly in front of my co workers and just be myself like a normal person.  Walking into work this morning I felt no anxiety about blushing, and after this moment I spent the rest of the day again with literally zero blushing related anxiety.  It didn't matter where I was, who was there, or how many people. etc.  I was no longer wasting energy trying "read" every social situation I was in to judge if the conversation would ever turn to me.  No question about it, it feels life changing.   I was actually able to do a better job at work too.  My thoughts were calmer, clearer, and hence I was able to focus on the tasks at hand instead of wallowing in ridiculous blushing purgatory.  I always knew the blushing was a distraction, but I did not realize just how much of a distraction until today...life instantly feels simpler.
    Once I got home from work I took the last bandages off from under my armpits.  I was not all that pleased with what I saw.  Before surgery, I asked Dr. Port if he could go in through my previous incision sites to minimize scarring.  He said he will if he can, but that sometimes he is not able to on redo cases because of how lung adhesions form and how he has to dissect them free from the chest wall.  Anyway, there are 2 new puncture sites on my left side and 1 new puncture site on my right.  One of the new puncture sites on my left side is covered by my arm when I put it down, but both sides have 1 puncture site forward of my arm as well, so if I'm standing with my arms down you can see them both clearly.  I'm hoping that these heal up well, but judging by my last ETS the scars will be somewhat visible for the rest of my life.  If I lift my arms now, there are going to be 3-4 visible scars underneath and it it looks pretty ugly.  I wish he would of made the punctures higher up where my armpit hair grows because the hair would of covered them better.  With Dr. Nielson and his Micro ETS approach the skin is much more preserved.  I'm not sure if he can use this same Micro approach for redo procedures due to the lung adhesions, but it's worth a shot to ask him.  I feel that the multiple puncture sites are likely related to the numbness of the skin on my chest due to damaging nerves every time you stab a new hole.  With Dr. Nielson I would think the less invasiveness of just a single, smaller puncture site would minimize the risk of the nerve damage/numbness as well. 
    Right Side:

    Left Side:

    Regarding the mental fog, it seems to have improved after getting a good nights sleep last night.  I can't say definitively if there were any psychological changes since there is no way to objectively measure this.  One thing to keep in mind though is that ETS has been used to treat PTSD in people, so it would not surprise me if there were some changes in me mentally.  If there were, then they must not be significant because nobody said anything to me about it today.  I'm not worried about it anyway for three reasons:  1.  I feel fine.  2.  I knew there was a risk of this happening and told myself that I accept the risk.  3.  My nerves were cauterized and there is NO going back for me anyway, so why bother worry about it in the first place.  Regardless I overall feel much happier now just that I am not blushing anymore.
    4 days out and things are pretty good.  
  13. scarface added a post in a topic Scheduled for ETS Redo on 06/16/17   

    Day 3
    So far so good.  There is still some soreness in my chest and there is also a feeling of chest "tightness" which I suppose will go away with time.  The skin on my upper chest is still completely numb.  I am still in the hospital and will be getting discharged in a few hours.
    Last night after a cup of coffee I started to experience moderate CS on my feet.  The episode lasted about 1 hour then stopped.  This morning I had another cup of coffee and no sweating on my feet at all.  Weird.  Hands have remained warm and dry the whole time.
    Last night and this morning I was walking around the ward where I and all the other post surgery patients are held.  I ran into a few groups of nurses and experienced what would of 100% been blushing episodes since I was put on the spot in front of a few females.  NO BLUSHING.  Not even a creeping feeling of a blush coming on.  The anxiety associated with it has instantly lifted as well.  I was able to walk around freely and had no problems being around groups of people.  
    Regarding my mental status, I have been getting doses of pain medication every 6 hours or so.  I believe the medication is causing some nausea or something along those lines because I still feel that mentally I am in a slight fog.  It is hard to think clearly the way I used to...perhaps I am just distracted by the slight pain/tightness in my chest, the medication I'm taking, and am still overwhelmed by this whole experience.  I believe i'll have to just go back home see how I feel once I'm back to my "baseline" lifestyle.  
  14. scarface added a post in a topic Scheduled for ETS Redo on 06/16/17   

    Dr. Johnathan W. Wallace
  15. scarface added a post in a topic Scheduled for ETS Redo on 06/16/17   

    Day 2.
    This morning another Doctor who was finishing her fellowship in Thoracic Surgery and assisted Dr. Port for my case came to see me and see how i'm doing.  I talked to her about the operation and she assured me that everything went good.  I asked her about the clamps and she confirmed that they looked for them but they were nowhere to be found.  The sympathetic chain at T2 was exposed where the clamp was applied but the clips just weren't on.  Just like Dr. Port said I suppose they fell off on their own so that is much more reassuring to me to know they in fact aren't on.
    CS is non-existent right now.  In fact, another unintended effect was dry, warm hands and feet.  My hands and feet were always cool and mildly sweaty.  It never bothered me and I only went for ETS to address facial blushing.  But if it resolved hand and feet sweat then I'll happily take it.
    Mentally, I am still in a fog presumably because I am on pain medication, haven't eaten anything since Thursday, and am very sleep deprived.  We'll see how this mental fog clears up once I am back home and off all meds.
    My upper chest is still completely numb.  I forgot to ask the Fellow about this but it may be due to numbing medication they injected in my armpits since they had to put the drainage tubing in.  Hopefully this wears off but it's really not that big of a deal if it doesn't. 
    Best of all, I've had plenty of nurses and people coming into my room and no blushing.  Not even anxiety about it.  Those aren't real tests but when I get a real one I will report back.