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FedUp77

My ETS Story: from surgery day through recovery

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I plan to update this thread with my experiences before, during, and after ETS for facial blushing. Please follow along if you are interested! 

*I was thinking of adding to the thread started by Mugsy: "Enough is Enough: Meds vs. ETS" as it follows at least 5 people and their experiences with ETS and the aftermath, but the thread has gotten off topic at times and has gotten so very long...so I thought I would start anew. If you are looking for other stories (which have already played out for over a year after ETS) be sure to check out this thread, it has proven to be very helpful to me in my journey so far.

I am happy to field any questions that you post here. I really hope this is helpful to others in their search for a cure!

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For my intro: I am 38, a mom, a wife, and a nurse. I am extremely social and outgoing, yet facial blushing consumes my daily "worrisome" (and private) thoughts. My job is requiring me to run meetings and speak publicly more and more now and I fear that I will not be able to do my job well if I do not get a handle on this severe facial blushing. Despite being prepared and confident, the blushing is predictable and intense. I dread each meeting and the comments after, and my attempts to brush them off. I will spare you the typical recounting of why it is so very hard, as if you are here reading this, you get it. I had considered ETS many years ago but thought it too drastic and moved on to trying meds and therapy for a while, none of which worked. I can't keep appearing nervous and incompetent (when I am NOT!) nor can I avoid these situations in my current position. I love my job and I am good at it, I'll be damned if this condition is going to take that from me.

And so here I am, scheduled for ETS on Wednesday 6/8/16 in New York with Dr. Gorenstein. He will cut at T2 only. Both sides in the same surgery, it's done under general and "takes about an hour". (I tell you this so that you don't have to ask, not to promote a certain doctor as some may speculate. If you are leery of this, then please disregard my post, no harm no foul). I searched since January for somebody closer to Boston, as that's where I live...alas I met with many discouraging pitfalls along the way ("why don't you just take a public speaking course?!") and ended up with a doctor who is known to have done ETS many times in the past specifically for facial blushing. It is a 4 hour drive for me, and will involve hitting the road at 2am for my 6am arrival at the hospital for my 8am procedure then recovery and back in the car for a 4 hour drive home. My husband is still a bit clueless as to why this is so important to me, he doesn't see me severely blush (it happens mostly at work) but he is my best friend and willing to hold my hand (and drive all day) because, well, because I'm a very lucky woman. 

This week has included lots of calls from the doctor's office and the hospital including pre-op questions and instructions, instructions to arrive a bit early for my blood work since I live too far to do it a day prior to the procedure, and insurance questions and prepping to submit my claim (which may or may not be approved in the end). 

Emotionally I have been pretty darn ok, until last night. I am apprehensive and worried, trying not to obsess about surgery in general, and then Horner's Syndrom and a possible drop in my already low resting heart rate. Compensatory sweating isn't a huge worry of mine as I already barely sweat as it is.

Alas, I am determined to make my life better. Here we go!

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Good luck, FedUp77! :) I hope you get a great result from this! A good choice only cutting T2. From all the posts I have read, and talked to surgeons about, this is most often the nerve ganglion that causes blushing. Horner´s Syndrome from ETS is almost non existing these days. It occurred mostly in the past, when they also cut T1. 

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Thanks blushingman, positivity is what I need right now!

Pre-surgery update: I had a major lapse in judgement and googled ETS during yet another bout of insomnia last night. I ended up on one of those negative sites, the ones I have managed to avoid up until now. Holy sh** do I regret clicking my way through that. Mental fuzziness, emotional numbness, forgetfulness, and no drive. These sites are overwhelmingly negative towards ETS in general anyways, as they are created by the few who have experienced negative results and want to warn people. Yikes.

Let's also keep in mind that there are many variables that can effect the likelihood of a negative outcome: experienced surgeon? cut t2 or more aggressively cutting t1 and/or t3? electrictricly burned, cut or clamped? when it was done....

I am reminding myself to take deep breaths and keep everything in perspective. There are so many variables and I am confident in my surgeon and hopeful for a positive future prognosis.

Deep. Breaths.

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Fedup, I will keep you in my praying. You will see that everything will come out just fine!!! After Wednesday, it will be a new YOU fresh and happy that you overcome this miserable disease. Im so happy for you and I will be checking every single update you post. I am saving money already to pay cash for my surgery. God bless you and keep positive. 

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Good luck Fedup, I'm sure everything will be fine and just remember its mainly the people with complaints who come back online, the rest are out there having fun! 

Just take it easy for a few days as your lungs will be hurting but it goes down loads day by day. Give your body time to adjust and take it all in your stride. 

I'm here if there is anything you want to ask me before or after your surgery.

Good luck :) 

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3.5 hours after surgery:

My eye isn't drooping, I'm not all drugged up, I'm pretty clear headed, just tired due to not sleeping at all last night...and stressing. Yippy!

Chest- I have some minor tightness in the chest, along the upper sternum. This is my only complaint right now, and it's really just an agrevation. Kind of like that feeling you get in your lungs when you run in really cold weather, and only when I breathe in deeply. 

Hands- They are no more dry than usual.

Emotional state- My husband and I have been joking and giggling in recovery, as usual (I feel like my happy self).

Blushing- No opportunity to test it yet. Next week at work will be the true test.

One more hour in recovery and then we can head home. My initial reaction, this was easier than getting my gallbladder removed and I'm glad I finally bit the bullet.

Now for time to tell....

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Evening of surgery day:

Sweating- It was pretty hot In the car during the 4.5 hour drive home and I snuggled up under a blanket most of the time. Not hot, not cold, no sweating. Just my normal temp. 

Chest- Pretty darn tight and heavy, from front to back along the sternum. Deep breaths are achy. I hate narcotics so all I've taken is Tylenol, since coming out of the OR. Surely this discomfirt could be more well managed if I weren't such a "just say no" kinda girl. ;)

Lungs- I forgot to mention that they routinely do a chest X-ray in recovery, no pneumothorax for me!

Sensation- One strange thing so far: the upper right quadrant of my left breast (4 inch area) is faintly numb to touch. Kind of like when your novacaine is just about the wear off from the dentist. Interesting but not awful. Hopefully this is short lived, if not, it's nothing I can't live with.

Thanks Tiago, Didi and Befree. ?

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1 Day After Surgery:

Chest- Last night was rough, I am not going to lie. I'm pretty tough, I delivered both of my children with no medication and typically have a pretty high pain tolerance in general. That being said, despite having only slept for 3 hours total from 7am on Tuesday until 11pm on Wednesday (including my time in the operating room and sleeping in the car on the way home), Wednesday night it took me over 3 hours of lots of pillow propping, tons of re-positioning and then I had to pop 1 percocet to finally fall asleep (they make me so dizzy, but they also help me to pass out and stay out for a bit if I'm tired). I was able to sleep for 5 hours then woke up in pain, the pain was strong enough that I had to ask my husband to help me to sit up and readjust a few times. It is very much relieved when I am upright, and conversely intensifies greatly the more flat (and longer) I lay in that position. I was then up for 2 hours, popped another percocet, propped myself up even more and managed to sleep from 7-10. So thankful for that! As for today, deep breaths are painful along with coughing, laughing and sneezing. I have to guard my chest when I do any of these. My pain is more severe on the left side, above and under my diaphragm, front to back. A kind of crushing/pressure feeling...It kind of feels like my lungs are filling up and pushing against my rib cage from the inside (of course this is not true, just trying to describe the feeling). All of that being said, I absolutely could not have gone back to work today, too tired and too sore. Thankfully I don't have to go back until Monday.

Hands- Feel dryer than usual, it's not bothering me at all though. I'm more encouraged that things are pointing towards having gone accordingly since I have not had an opportunity to test my blushing yet.

Heart Rate- I have been tracking it for years and it has always been pretty low (resting rate in the high 50's) so I was concerned. Well, this definitely had an effect on my heart rate. I am averaging in the high 40's now...which does make me nervous. The lowest it's been is 46. Yikes. That being said, I feel fine and as far as I can tell my energy level is the same with no episodes of lightheadedness. My ability to exert myself through exercise will have to be tested once I have healed a bit more in the future. Definitely not pleased about this but I did know this was a strong possibility going into it and I still took the chance.

Befree- Thanks for letting me know, the "barely numb" feeling is still there...and apparently may be for a while longer. ;)

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Congratulations on finding the courage to take the plunge.  It sounds like everything went smoothly.  The numbness is common and caused by brachial plexus injury.  Mine never went away but it's not a big deal.  The heart rate drop sounds concerning but the body has feedback mechanisms to override a low heart rate if a higher cardiac out is required...so I personally don't think it's a big deal.  Please keep us posted on your progress.  Don't forget, you may experience phantom blushing the next few times you are in social situations but once you realize you aren't actually going red the phantoms should clear up quickly since you will have psychological reinforcement that the blushing is not happening anymore.  

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I can't find my post about my heart rate, it's somewhere on someone's post in this forum but it was in the high 50s and now I've just checked and it's 61. Check yours in a few days when you start moving about more, it may come up a little when your body adjusts x

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2 Days After Surgery:

Chest- I slept better last night, still needed to prop myself up but I didn't need any percocet and managed to stay asleep, mostly. By the morning I was relatively pain free which was lovely. Unfortunately once I sat up and got moving to start my day I had an awful nagging pain inside of my left chest, a deep and stabbing feeling. Once I started walking around it was accompanied by a "crunching" feeling when I either breathed in or out. Kind of like a paper bag crumpling, and kind of like being stabbed in the chest when it was happening. Ahhh! It really was just awful. I am a nurse so I immediately did some research on what I thought it might be and looked for ways to treat it. It had to have been a minor pneumothorax, I could hear it with my stethoscope and man oh man could I feel it. After running some (extremely painful) errands I came home and laid on my side with the affected side up. To my relief, the pain quickly went away in this position. Unfortunately I had a busy schedule though and I had to go to my son's awards assembly after an hour of resting. The pain came back immediately when I stood up again, if ever so slightly less. After that I returned home for more side-lying (2 hours). I concentrated on breathing in deeply and holding my breath for long periods, hoping it would help to force the air out of my pleural cavity. I eventually felt some really odd pangs and air moving in odd places...and later when I stood up, the pain was gone. Thank God. That was absolutely miserable. If that pain had persisted I would have had to make a trip to the ER tonight I think. As for later this afternoon and now still, I have no pain and just a slight tightness when I breathe in very deeply (but I keep doing this because it surely is helping).

Sensation- I have noticed my scalp tingling occasionally, kind of like a goose bumps feeling on my head. It's odd, not painful, and not uncomfortable. Doesn't bother me but I thought it was interesting. 

Sweating- I started out pretty much as a non-sweater. Today while at the assembly (it was kind of warm in there) my feet and ass were a bit hotter than usual. TMI. Not sweaty, just hot. Had I had to sit much longer I probably would have had a nice case of swamp ass going on. 

Blushing- None yet, and I did have a few encounters today where I pushed the limits and was very outgoing and a real comedian (at least I thought I was). I typically would avoid that knowing that I would most likely blush. So far so good. 

*All of this being said I am only 2 days out from surgery and things are surely still adjusting, plus I am still recovering. Again I am so thankful that I don't have to work until Monday and am eager to see about my blushing when work's stresses present. I occasionally have moments where I think "I can't believe I actually did this" and I get nervous that I may have done the wrong thing. I hate to admit that, but it really is a gamble and my future is slowly unfolding in front of me and I'm not sure if it's all positive. It's a bit suspenseful, and unfortunately it will continue to be this way for weeks/months/years from what I understand.

scarface- Thanks for reminding me of the phantom blushing, it's good to be prepared. I do think I have a minor brachial plexus issue going on, still mildly numb, hasn't change. As for the heart rate I must admit I was glad to read that you didn't see it as a big deal (even though I'm guessing you're not a doctor ;)). Could you elaborate on how the body might compensate for a lowered heart rate? I have read that stroke volumes are known to change too, but can't find anything with any more detail than just that. It really does have me a bit nervous.

Befree- I am hopeful that my heart rate will pick up just a bit. I've been getting an average of 45 today. Still feel fine (at least I think, although I am a bit tired, but I think that has to do with still being so close to the surgery date and working on recovering).

tiago- A "normal" heart rate is considered to be between 60-100 beats per minute, although people who are in shape can go as low as 50. Under 50 tends to be for very fit people (I wish I could say that were me, but it's not) or people with an abnormally low heart rate that is not feeding their brain enough oxygen. If fainting, tiredness, and/or shortness of breath go along with a lower heart rate that is when it is something that needs to be treated. If your doctor was ok with yours, then I assume it was a normal finding. This is definitely something to consider though if you are contemplating getting ETS as it tends to cause a drop in people's resting heart rate.

Beastywild- Thank you.

liss- Here you go! :)

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