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FB. Enough is Enough. Meds vs. ETS?

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Quick update: I'm three weeks post-op and feeling more and more satisfied with the outcome as the days progress. Now had several meetings in work where I've remained completely calm, sweat free and almost blush free (except for a little heat on my left cheek which is there some days, and not there on others). As I've said in other posts, the palpatations that usually make me feel more and more uncomfortable in these situations are simply not there.

 

I also had an altercation with a neighbour at the weekend, and where previously my heart would race and I would feel my voice tremble as I inevitably felt all hot and flushed, I was composed and cool. I met some of my girlfriend's extended family at her parents' house and felt relaxed throughout. No CS to report yet either.

 

I've still got some nerve pain in my left arm but this has reduced in intensity over the weekend. It doesn't hurt as much when I cough either, so presumably the gabapentin tabs have kicked in.

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Glad to hear you're feeling better David!

 

Today was my two week post-op. Friday night was my worst night by far. I thought that I definitely had pneumonia or an unresolved pneumothorax because of my left-side pain. I called the surgeon's office and they told me to get an X-ray with my GP. The X-ray showed nothing, which I know is good, but I was hoping for a reason for the pain. Things took a turn over the weekend however and, while the pain is still there, it's much much less. I'm left with less pain and slightly decreased sensation/numbness on the left side of my chest. I still have a bit of a cough but that is also getting better. I told the surgeon about all of this today and he is not at all concerned. He said it's only two weeks post-op and the symptoms are common and will resolve. He has no concerns and I don't need to see him again. 

 

On the blushing front, things are awesome. In the past two weeks, I felt two episodes of near blushing (or actual blushing) but I am not sure it even really happened because it went away immediately. The fear that it will happen is still there but I think that will go away in time. It's funny because I spent my whole life blushing and avoiding situations or conversations that I knew might cause me to blush and SNAP!, overnight, it's gone. I thought I would go through my day skipping and dancing to celebrate being free of blushing but it's hardly something I think about anymore. It's like when I got laser eye surgery to correct my vision; I thought I'd wake up every day and yell I CAN SEE!  But I didn't. I just woke up and went about my day without giving a second thought to the fact that I hadn't needed to put on my glasses or contacts. 

 

I have no negative side-effects, aside from the left sided pain/numbness (improving). No CS or GS at all. It's pretty amazing. In the upcoming weeks I know I'll have many more chances to test the effectiveness of the surgery and, while I said above that I don't think about blushing on a daily basis like I used to, I definitely am acutely aware of the situations that, in the past, would have set it off. Each time I don't blush in those situations, I am so pleased and grateful that I went through with the surgery and it's all behind me now. That said, it is a serious surgery and, in my opinion, should be considered as a last resort. My results could be vastly different than someone else's. Anyone considering the surgery should do their homework and understand all the possible side-effects. I rolled the dice and got really, really lucky.

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Reading all these comments Mugsy and David I'm so happy for you that you finally resolved this debilitating condition without damaging your health and you can move on with your lives leaving blushing behind. It was brave decision to make but sometimes it's worth to take risk to improve quality of life. 

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Hi Anna,

 

Great timing! I had my follow up at my surgeon's office yesterday and explained how I've been feeling since my op five weeks ago. In summary, here's what I told him...

 

I now no longer feel as nervous or anxious either before or during situations that would previously provoke my sweating and blushing symptoms. My shock mechanism feels like it has completely diminished.

 

Facial Blushing - because I no longer feel nervous or get the instant palpitations and rising heat through my neck and into my cheeks, I'd say the blushing has certainly reduced substantially.

 

Facial Flushing - this is a longer-lasting facial warmth and redness that I feel is still there to an extent when I'm in a hot room or exercising, although it's not debilatating and doesn't make me feel as uncomfortable as previously - there is no burn like before. Years of blushing has left me with a naturally rosy glow anyway so I'm quite comfortable with this.

 

Facial Sweating - simply no longer an issue. Even yesterday when I walked through the hostpital to the surgeon's office, I would have previously had a thin film of sweat all over my face head and neck - moreso once seated in the surgeon's office and when I began talking, but it was just not there. This has dramatically improved my confidence. I do notice a very slight sweat from the right side of my forehead when in the bath or exercising but not a total outpouring as previously. I've also noticed that the right side of my face is slightly pinker than my left side when this sweating occur, but its not bothersome and only slight. This reduces immediately after exercise.

 

Compensatory sweating - The "film" of sweat I mentioned above that would usually be on my face during times of stress, exercising etc has now moved onto my lower back, thighs and stomach, although it's only slight, definitely not uncomfortable and doesn't show through my clothes.

 

Other sweating - Both of my palms are bone dry, to the extent I have to lick my finger to turn a page or count money I use moisturiser daily to help this. I also no longer sweat from my right armpit, although I still sweat from my left armpit and have used dricolor which stops this for 3-4 days after each application. When speaking to the surgeon, I questioned why the left armpit was still sweating and why the right side of my forehead would sweat during exercise and he told me that's because the sympathetic chain is not anatomically exact or symmetrical.

 

The nerve pain I was feeling in my left arm has reduced dramatically and the surgeon said this should diminish further in the coming weeks. I'm still taking gabapentin for nerve pain.

 

So overall, I'm still very happy with the results. The surgeon seemed pleased enough with my comprehensive reports too. I'll be monitoring how things go and get back to them if my sweating or blushing increases at any time.

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5 weeks post-op today, so here's an update: 

 

Blushing: not happening. I'm still shocked and ecstatic. Like I told David, I really and truly feel like a new person. Or rather, I feel like myself, because that uncontrollable blushing never felt like it belonged with my personality. I used to wonder if I was in fact shy or easily embarrassed, and if I was just in denial. Turns out, nope. Not this chick. I am finally, or should I say, still, able to be myself but without the blushing. 

 

Going from being a lifelong, daily blusher to not blushing at all is overwhelming and feels like the greatest gift ever. In fact, sometimes I wonder if I'm imaging it. Maybe I'm blushing but just don't feel it? I constantly want to ask people "is my face all red?" What I definitely don't have is that "click" where the blushing starts, the heat and redness creep up my neck and face, and all I want to do is escape. That's definitely not happening. It's really freeing.  For my entire life I was angry with myself for what I perceived as a weakness within myself, but now, after ETS, I see it differently. I really feel like it was a physiological disorder (with a learned psychological component) that I didn't, and couldn't, have control over. For me personally, I strongly believe that no amount of CBT could do what ETS has done for me. I needed physical intervention because, for me, it has been a physical abnormality. Once that nerve was severed, my system was no longer able to be overactive. Another indicator of the fact that it's always been physically based for me is that, in the same way I couldn't will it to turn off, I could never will myself to blush. The on and off has always been completely out of my control. Now, to be clear, I'm not quite done testing this. I've been in many situations in the past 5 weeks where I normally would have blushed, but I still have some more scenarios I'd like to test. But so far, so great. 

 

Flushing: also decreased. I've always been athletic but no matter how fit I was, whenever I exercised my face used to get terribly red and blotchy, i.e.: all red with white blotches to the point that people would ask me if I was ok.  Yesterday I ran a good distance in heat and humidity and my face did not feel hot/tingly afterwards. I was not somewhere with a mirror so I asked my friend if my face looked like I was having a coronary. She insisted that it looked perfectly normal. Not believing that I didn't look like a red blotchy monster, my friend put her phone on camera and pointed it at my face... and for the first time ever, no blotches! It was only slightly pink, and barely at that. Another bonus. My average heart rate while exercising has been lower than normal (like 20 bpm lower) but may be that's because I took some time off after the surgery and just need to get back into shape and work out a little harder. 

 

Sweating: I no longer sweat from the neck up. Sweating everywhere else is normal. As someone who never had HH, I'm not really experiencing any compensatory sweating. Summer is coming though, so that might change.  Hands are still wonderfully warm rather than ice cubes (unexpected bonus).

 

Pain: No more pain at all. The incisions are so tiny and healing nicely. All I'm left with is the decreased sensation/numbness on the left side of my chest. If anything, it's weird and a nuisance at best. I would like for it to go away, but if it doesn't I am perfectly willing to accept it as a trade off. 

 

Like David, I am also very happy with the results. I'm glad it's behind me and I'm looking forward to grabbing life by the horns with no inhibitions or constraints. I'll keep updating from time to time and let you all know if there have been any changes. Feel free to message me if you have any questions!

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Amazing to hear you're doing so well, so much so that ETS is coming back on my radar as a possible treatment option. I'd ruled it out a long time ago after reading of the many horror stories but hearing success (although early) like yours is making me reconsider. Thanks for sharing and please keep us updated.

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Has anyone seen this clip from Grey's Anatomy? 

 I've never seen the show but I found the clip on youtube. I think it's nice that they are featuring a storyline about facial blushing and that they discuss the risks of ETS but I also think the clip is a bit funny based on my own experience as a blusher: 1) I never went bright red in .5 seconds flat like she did in the first seven seconds of the clip (although sometimes it felt like that), 2) I would NEVER fan myself like that or keep feeling my face because it would bring more attention to my blushing (plus, I would have been too busy trying to find a way to escape), 3) I blushed in many situations, most of which had nothing at all to do with emotions, 4) I didn't have doctors try to talk me out of the procedure before being wheeled into the OR, and 5) I wasn't given a silk, lavender kimono to wear pre-op. Other than that, spot on. 

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I posted the link above but instead of showing as a link, it's showing as a still of the actual clip... have never seen that happen before. Anyway, check it out. 

 

...how does your FB experience compare?

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Update about one of my side effects: I have always worn a heart rate monitor when exercising so I have always been very aware of my average heart rate during various cardio activities. Because I've always kept track of my heart rate, I know that I've always had a fairly high resting heart rate (between 80-90 bpm). During moderate exercise my heart rate was typically between 160-170 bpm and during anaerobic bursts my heart rate could get as high as 195 bpm. I saw a cardiologist several years ago because I felt that since I worked out a lot my resting heart rate should have been lower. In summary, he said my heart was fine and I just wasn't in as good a shape as I thought I was. Since the ETS, I've been monitoring my resting and aerobic heart rate and it's official: my heart rate is 20-25 bpm lower. My average resting heart rate is now about 160 bpm (even lower first thing in the morning), moderate exercise is between 135-150 and during anaerobic bursts my heart rate barely reaches 170. What's interesting though is that I don't physically feel any different. It seems that I am able to do the same workout, feel the same during the workout, but my heart is not having to work as hard...or rather, can't work as hard as it used to. I don't know what any of this means or if this is a good thing or a bad thing. At my initial consult with the surgeon I did ask him about the effects of ETS on exercising and the effects on resting heart rate and heart rate at anaerobic thresholds but he didn't really say much about this potential side effect. I am going to ask the surgeon about it this coming week. Again, not sure if it's a concern but the surgery definitely has had an effect on my cardiac functioning, so I thought I'd share it with the group. Anyone considering the surgery may want to ask the surgeon about it, especially if you currently have a low resting heart rate. 

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That's not bad. I wouldnt mind my heart rate to be slower. Mostly im scared of excessive sweating, but I made my decision and Im ready to take the risk. About this clip on youtube, My blushing/flushing is much much stronger than this woman there, it usually covers my neck and neckline and the heat i feel is unbearable. if i was her I wouldn't have decided to have surgery, she seems to blush only on her cheeks. 

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I spoke with a cardiologist friend of the family today and he said the surgery likely created a beta blocker effect for me. He said my old heart rate seemed high and he doesn't think this change is something to be concerned about. He said that my heart rate appears to be closer to normal now. He said that with the high heart rate I used to have, he's surprised that the surgeon didn't check my thyroid prior to surgery. I called my PCP's office after the conversation with the cardiologist and it seems that I did have my thyroid checked as part of a routine exam in 2013 and everything was normal. That said, I'm still going to have a follow visit with my PCP next week.  Also, the surgeon got back to me today and said that very few patients have exercise data and so a reduced heart rate is unknown as to frequency. He thinks my old heart rate was very high despite all of the aerobic exercise. He thinks the bottom line is exercise capacity, and since it's not effected despite a lower exercise HR, it's good. I guess this is the new normal. Although this is a really big change for me, I feel better having talked to the doctors. 

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David and Mugsy, glad to hear your success stories with the ets surgery. I'm new to this forum. I'm a 30 year old male. American with Irish and German heritage. Fair skinned, blonde hair blue eyes. I've been dealing with FB for a long time (I also sweat a lot but not to the point where's it an issue) - I believe I started noticing the FB in Freshman year of high school (age 14). Was triggered when standing in front of the class presenting. I'm a very social person with a ton of friends and family. This condition has always bothered me but never really effected my life until now.

I am a very intelligent, business savvy individual; but I find it very difficult to perform at my peak due to this FB condition. Any time I'm in a meeting with two or more people, or in an interview this FB occurs. And it's not like I'm nervous. It just happens. Then I get anxiety over the fact people notice me turning red, not allowing me to think straight. It's straight up awful. So I started doing research on it back in 2009. I was surprised and relieved that I wasn't alone out there and that there is a surgery that can be performed to possibly fix this issue. After thorough research I came to understand that this surgery wasn't a guarantee and is actually very controversial. So I decided to pass on it and just continue life the way I always have been.

I'm now in between jobs, and I've been going on many interviews. The condition doesn't always happen on these interviews because most of them have been one on one. But even in that environment, if I'm caught off guard with a question about me, it usually triggers. (I've actually noticed small doses of adderol actually helped - probably due to the fact of extreme focus and concentration, few questions would catch me off guard)

Anyways this time spent interviewing and dealing with the FB made me look back into ets surgery. It seems as if there more information out there now then there was 6 years ago. Also time has also created more experienced surgerions which is also probably helping with the success rate explaining why I'm reading more and more success stories as opposed to 2009.

I am going to see Dr. Lyall Gorenstein this Thursday to discuss the procedure. I hope to set a surgery date for later this month. I believe I heard Mugsy mention Dr. Gorenstein. He claims to have done over 1000 ets surgerys which makes me feel somewhat comfortable in his hands and odds of success with minimal side effects.

I really hope this surgery turns out as successful as both of yours seem to be going. I wanted to thank you for sharing your stories and ask that you please continue to update us. I plan on doing the same. This condition can be very detrimental to an individual's well-being. Luckily I have a very strong will but even I get down in the dumps about the condition. I can only imagine how others cope with it, especially individuals who aren't as strong. We need to make sure those individuals know they are not alone. And the more feedback we give about these surgeries, hopefully it will allow them to make a proper educated decision if this could be an option for them. I'll keep everyone updated with my progress.

Aside from your updates, who were the surgeons that performed this surgery on you? And where? And how much did it cost? How much did insurance cover?

Thanks again for sharing your stories.

S

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Thanks for sharing NYC1984!! Your story is very similar to mine. Outgoing, social, not easily embarrassed or nervous, only this ridiculous FB seems to betray that we've been caught off guard for a split second. Classrooms were torture. I would rather have given a speech in front of a group of 600 than a group of 6 because with a large group, I'm far enough away that no one can see my face clearly. So limiting and infuriating. As you may know from following David's and my surgery journeys, I had the procedure done by Dr. Gorenstien. You can feel free to message me privately for more information but I've put most of it out there in my posts. As you probably know, I am really happy with the results and newfound freedom. Looking forward to hearing about your results. Wishing you the best of luck...

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I recently have quit my job I wasnt coping with this blushing and anxiety. I was working on open plant area and was constantly red. For half year i have been overdosing calming pills which left me drowsy and tired. Now i stopped taking any medications and decided to go ahead with this surgery.

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Hi Anna

I've certainly contemplated using medication to offset this condition but honestly I feel like those pills just change people when they are taken so often.. Don't really wanna go down that route myself. I tried taking adderoll to help with the condition - it helped somewhat but definitely didn't get rid of the FB all together. In fact, certain doses increased the FB.

I'm going in for my consultation Thursday. Same surgeon as Mugsy - Dr. Gorenstein.

Who are you considering as your surgeon?

Best of luck with everything! Please keep the group updated as you move forward.

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Hi there,

 

I live in London so I'm going to try to do this surgery on NHS for free. I'm going to have first consultation in hospital in July. I have done all blood tests I'm healthy my GP giving me referral to hospital said that there is no guarantee they will do it because it's cosmetic. I don't think its cosmetic at all.. I have no insurance so doing this op privately would cost me £4800. 

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Hi Anna. I had mine done on the NHS two months ago... and I can assure you that an operation to correct an overactive nervous system is anything BUT cosmetic, so you should not have to go private.

My two month update is not dissimilar to my last post. Still incredibly pleased with the outcome so far and enjoying not even have to think about sweating or blushing ruining my social and workplace interactions. I shouldve done this years ago.

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I have my surgery set up with Gorenstein for Friday the 19th... Pretty nervous, and excited all at the same time.

I am a bit worried about Dry Facial Skin.. I feel like my skin may get red if dryness is extreme.. Has anyone experienced this?

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Wow NYC1984, that was fast, glad it worked out. How the heck did you get it scheduled for a Friday? I was told he only did the surgery on Mondays! I have not experienced any dryness at all. I notice that when I work out my face doesn't sweat...which is actually nice; better than having sweat run into my eyes. Don't ask me how I know this, but even though I don't sweat, my face is salty after a workout. Weird. 

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Thanks Mugsy! Hopefully all goes well.. Gorenstein does surgeries on Fridays at his Englewood NJ office. He didn't accept my insurance at the Columbia NYC location, so I had to go to NJ - strange, but whatever..

Thank for all the talks! Wish me luck!

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