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My ETS Experience

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After thinking about going through with ETS surgery for many, many years, I finally pulled the trigger and had the surgery on Wednesday morning (yesterday)!  All of the experiences and posts on here have been so helpful to me in making my decision that I wanted to share my story and information about my surgery with others.  I probably won't get on here very often to check comments because I don't want to obsess about every detail/change with my body, but I will try to come back periodically and let you know how things are going.  My insurance company would not cover ETS so I decided after saving for awhile to go to Dr. Nielson in San Antonio and pay out of pocket.  My husband and son drove down with my this week, and I had the surgery early Wednesday morning.  It was over in about an hour, and I woke up from the anesthesia feeling pretty good.  I had a slight tightness in my chest, but it was bearable.  It mostly just hurt to cough, clear my throat, things where you're exerting pressure on that area.  When I woke up, I was very thirsty and could barely swallow because my mouth was so dry.  The other thing that I hadn't expected was I was very cold, to the point of shivering.  They had three blankets layered over me, but I felt like I couldn't get warm.  I've noticed over the past 2 days that when a room is a little chilly I immediately want a sweater/jacket, whereas before it wouldn't have bothered me.   Maybe my body is still trying to adjust to the temperature changes, I'm not sure though.  

Generally i'm feeling good at the end of the second day post surgery.  I can breathe normally now, but I have noticed the areas around the incisions are a little sore still.  I have two very tiny incisions- one of each side of my chest right at the bottom on my armpit.  Other changes I've noticed... my hands are much drier and warmer than before surgery.  I've had to put lotion on several times a day to keep them feeling normal.  It's just something I'll have to get used to.  As fas as blushing, I'm still not sure because I have mostly been around my husband and son, and I typically don't blush around them.  We have been out to eat and to the grocery store, and I didn't have any feelings of a blush coming on so that is promising.  I do still flush so that part seems to have stayed about the same.  My face was pink after I took a shower this morning and then also after I washed my face and applied lotion this evening.  I also noticed a little bit of redness (flushing not blushing though) when the heat was on high in the car and I had a jacket on.  The flushing does seem to go away a little faster than before though, but it's still early and hard to tell if there's much difference.  

I'm trying not to overthink things right now and just take the recovery one day at a time and see how my body is reacting to the change.  I'll keep you all posted about the blushing once things get back to normal and I'm in more socially stressful situations.  Hope this is helpful for someone!  :)

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Posted · Report post

I'm assuming you were cauterize at the T2 level, correct?  Did Dr. Nielsen say if he found a kuntz nerve?

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Hi, Yes I was cauterized at the T2 level only.  He did not mention finding a kuntz nerve and showed me the photo of the T2 nerve that he cut on each side.   

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Posted · Report post

How old are you mel?

 

just make sure you think about it and read up on it so you know what your letting yourself in for.

 

i would take the op if i could afford it.

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I'm too old now to be bothered with ETS now. I think if I were young again I would most definitely have had it done if possible. Life used to be sheer hell. Now it's just hell at times. As Mr Lee states, risk factors would have to be taken into consideration before proceeding. I take efexor and some days I feel like I can take on the world and other days not so much. I think one of the worse things about blushing is other people's reaction to it. Many people seem to get a kick out of mentioning how red a person goes. I mean if a man had one arm, you wouldn't really start making jokes about their appearance and point at them. Blushing sufferers seem to feel guilty for just existing. They are super-sensitive individuals. I even used to blush a lot in family situations, never mind in front of strangers. My whole life seemed to be ruled by it. Doctors and such like would say it's normal to blush, it doesn't feel like it if you do it one hundred times a day !

I used to shake like a jelly in social situations as well, stuff of nightmares. I think it's just in some people to blush violently (nature, rather than nurture).  I do feel it can be made worse if the person gets themselves into an unhealthy type of lifestyle, though.

That's my lot for now.

 

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I think at 16 years old i wouldnt have been ready for ETS.

 

it is a young age with 3 different outcomes , making you alot better, making you alot worse or no change, eitherway at 16 you will have to put up with one of those outcomes for the rest of your life.

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There was a New Zealand article where a surgeon performed ets on an 8 year old. It didn't say if it was for blushing or sweating though, I'll ask him at my consultation on 4th of may. 

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My understanding is that the clamps must be removed within a few days.  Otherwise the operation is permanent.

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Posted · Report post

The sweating for some people is supposedly really bad, to the point where it looks like you have jumped into a pool

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Hi guys!  It's been 5 days since my surgery so just want to do a quick update...  

-  Today it was 88 degrees here, and I was outside in the yard quite a bit playing with my 2 year old son and helping my husband clean up the yard.  I was wearing loose pants and a light t-shirt and felt a film of sweat on my legs and torso.  I also felt a little bit of moisture on my armpits but don't know if I was actually sweating or just having the sensation of it.  My shirt was dry under my arms.   I didn't sweat much before the surgery, but if I did it was usually on my armpits or face so this is a change.  Also, my hands are pretty dry and need lotion a few times a day especially after coming into contact with water. 

-  I haven't had an intense blush since the surgery.  Like I said above, my face still gets pink in stressful situations or when I bed over to pick something up, etc.  Basically anytime I would flush before, I still flush.  I knew that there was a chance I would still flush so am just accepting that.  I still have the fear of blushing from before and get nervous in those types of situations but have not blushed yet that I know of. 

-  Today the worst part for me has been having a headache and sort of dizzy feeling.  My ears feel stuffy, almost like I'm getting a cold.  I'm not sure if this is a change from the surgery or just the start of a cold.  I'm overanalyzing everything right now, ha!  I'm hoping the headache will be gone tomorrow and my head will feel clearer.  

-  I'm sitting on the couch right now typing this, 75 degrees in the house with AC running, and I'm still sweating on my back.  It's a little bothersome and I'm thinking I may try some kind of antipersperant to reduce the moisture.  

I'll keep you guys updated as I go along.  Best of luck to everyone! :)

Edited by asmith
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Interesting to read your update :) 

I was hoping for your next update you could elaborate on what you mean by "still getting pink in stressful situations". If it is only physical stress, or also psychological stress. Like would you still get pink in a presentation and/or meeting situation? If so, do you consider the surgery a success, and why? 

Cheers :) 

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That's what I'm worried about, my anxiety blotchy flushes that can last hours is ruining my like more than the quick on the spot blushes. If ets doesn't help that then I'm screwed.

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Posted (edited) · Report post

mm

Edited by meli74

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Hi guys!  It's been 5 days since my surgery so just want to do a quick update...  

-  Today it was 88 degrees here, and I was outside in the yard quite a bit playing with my 2 year old son and helping my husband clean up the yard.  I was wearing loose pants and a light t-shirt and felt a film of sweat on my legs and torso.  I also felt a little bit of moisture on my armpits but don't know if I was actually sweating or just having the sensation of it.  My shirt was dry under my arms.   I didn't sweat much before the surgery, but if I did it was usually on my armpits or face so this is a change.  Also, my hands are pretty dry and need lotion a few times a day especially after coming into contact with water. 

-  I haven't had an intense blush since the surgery.  Like I said above, my face still gets pink in stressful situations or when I bed over to pick something up, etc.  Basically anytime I would flush before, I still flush.  I knew that there was a chance I would still flush so am just accepting that.  I still have the fear of blushing from before and get nervous in those types of situations but have not blushed yet that I know of. 

-  Today the worst part for me has been having a headache and sort of dizzy feeling.  My ears feel stuffy, almost like I'm getting a cold.  I'm not sure if this is a change from the surgery or just the start of a cold.  I'm overanalyzing everything right now, ha!  I'm hoping the headache will be gone tomorrow and my head will feel clearer.  

-  I'm sitting on the couch right now typing this, 75 degrees in the house with AC running, and I'm still sweating on my back.  It's a little bothersome and I'm thinking I may try some kind of antipersperant to reduce the moisture.  

I'll keep you guys updated as I go along.  Best of luck to everyone! :)

Hi asmith, I just wanted to reach out and say that I had these very headaches after ETS and struggled to find an answer the entire time. My primary care doctor was baffled, she couldn't find an anatomical nor pathophysiological link between the T2 nerve getting cut and these (sometimes debilitating) frontal headaches occurring. I hope yours is fleeting and that you find comfort soon. Mine lasted 7-8 weeks, peaking in intensity around week 2 post ETS and waning in intensity after that until I could confidently say they were gone around 2 months after ETS. It was pretty scary and lonely during that time, I was fearful that they would last forever. I don't mean to be a downer but I wanted to reach out and give you an idea of what I experienced as I'd have loved for some input from someone during that time myself. I hope your symptoms aren't in fact what I dealt with, but if they are just know that there is an end in sight. Also, for the sweating, DriClor has worked wonders for me. I applied it everywhere I sweat from (and that's a lot of areas) a few nights in a row, and then weekly a couple of times and now since the last application over a month ago I can confidently say I don't sweat from compensatory sweating any longer. I feel like myself again. Apparently it can eventually have lasting effects so we'll see if I need to continue to apply in the summer months. As for flushing/blushing, I'm not sure where I am with that. I definitely don't flash blush like I used to but stressful situations can bring a gradual flush now, it's pretty predictable actually. Frustrating but it is what it is, and I'm taking the bad with the good nowadays. I hope you continue to recover well, hang in there and know that there are friends out there who have been through it too.

I have a thread on here where I updated my experience pretty frequently if you want to check it out: "My ETS Surgery: surgery day through recovery". http://esfbchannel.invisionzone.com/index.php?/topic/4083-my-ets-story-from-surgery-day-through-recovery/ 

Best of luck and be well.

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Hi guys!  It's been 5 days since my surgery so just want to do a quick update...  

-  Today it was 88 degrees here, and I was outside in the yard quite a bit playing with my 2 year old son and helping my husband clean up the yard.  I was wearing loose pants and a light t-shirt and felt a film of sweat on my legs and torso.  I also felt a little bit of moisture on my armpits but don't know if I was actually sweating or just having the sensation of it.  My shirt was dry under my arms.   I didn't sweat much before the surgery, but if I did it was usually on my armpits or face so this is a change.  Also, my hands are pretty dry and need lotion a few times a day especially after coming into contact with water. 

-  I haven't had an intense blush since the surgery.  Like I said above, my face still gets pink in stressful situations or when I bed over to pick something up, etc.  Basically anytime I would flush before, I still flush.  I knew that there was a chance I would still flush so am just accepting that.  I still have the fear of blushing from before and get nervous in those types of situations but have not blushed yet that I know of. 

-  Today the worst part for me has been having a headache and sort of dizzy feeling.  My ears feel stuffy, almost like I'm getting a cold.  I'm not sure if this is a change from the surgery or just the start of a cold.  I'm overanalyzing everything right now, ha!  I'm hoping the headache will be gone tomorrow and my head will feel clearer.  

-  I'm sitting on the couch right now typing this, 75 degrees in the house with AC running, and I'm still sweating on my back.  It's a little bothersome and I'm thinking I may try some kind of antipersperant to reduce the moisture.  

I'll keep you guys updated as I go along.  Best of luck to everyone! :)

How bad is the sweating do you have pictures or examples? is it really bad?

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88

Edited by meli74

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67

Edited by meli74

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Hi!  In response to blushingman's question-  the flushing happens during a variety of times so it's hard to pinpoint just one cause.  It's happened since the surgery from a hot room, physical exercise, stress, but I don't think I get as flushed as I would have prior to surgery.  It seems like the flushes are less intense.  My main point is if you have flushing pre-ets it's possible that you will still have it after the surgery.  That's been the case for me.  I think it's too early to say whether the surgery is a success.  I want to give it a couple of months at least before I decide.  The past couple of days have been tough with headaches and lots of night sweating so at this point I'm not sure.  

Fedup-  Thanks so much for letting me know more information about your headaches.  My headache seems to be letting up today, but it seems to come and go (with it being worse in the mornings).  It really was unbearable the first two days so I'm hoping it's coming to an end.  I'm so sorry yours lasted so long!  I also have the fuzzy/nauseaus feeling that you talked about so I hope that will clear away with the headache.  Thanks also for the information about DriClor- I will order that tonight!  The past two nights I have slept in very little clothing with only a light blanket on the bed, and I've still soaked through the sheets from sweating.  I wake up wet and cold from my chest down, and it's so unpleasant.  I used to sleep in sweatpants and sweaters with a comforter, and now I am practically naked and yet I still sweat.  Hopefully the anti-perspirant will help!  

Mel- My resting heart rate has gone from about 65 to 53.  Dr. Nielson said he sees about a 10 bpm drop on average.  He tends to see a bigger drop if the heart rate starts out really high.    

Mojow- The sweating is really bad for me at night.  At night my legs, torso, and back sweat to the point where the sheets are wet.  My husband notices the sweating if he moves over towards my side of the bed during the night or gets close to me.  During the day the CS is not a problem if the temperature is below 80 outside.  The two days that it got above 80, I noticed that my clothes were damp from the chest down.  The sweat didn't show through the clothes but it was uncomfortable for me.  At one point I was sitting outside in a metal chair and I left a sweaty spot when I got up.  You couldn't see that my dress was wet but it was still annoying to leave a sweaty print on the chair.    

 

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