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mugsy

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mugsy last won the day on April 8 2018

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  1. Sorry, I have not logged on in several months. Just catching up on the last few posts. As far as how I'm doing, I am still 100% happy with my decision to go through with ETS. I have absolutely no blushing and no more flushing during exercise. I cannot sweat from may face, but I don't see that as a bad thing. If I have CS, it's not bad enough that I notice it. My heart rate is still lower than pre-ETS, but it was always high to begin with, even when I was in good physical shape. I am so happy with my "new normal" and I hardly ever even think about blushing anymore. I've talked to two of my kids (both blushers) about the surgery. They think ETS extreme, and I don't blame them, but I would fully support their decision to go through with the surgery when they are older. I told them to 1) consider the effect of FB on their lives to determine if intervention is worth it, 2) if needed, try meds and/or cognitive-behavior Tx to manage their FB, 3) if nothing works, and they want to try ETS, they'll need to do their HW to understand the surgery and potential side-effects. As I always say, keep posting, and keep sharing your stories - successes or otherwise. This forum certainly changed my life for the better, and I hope it does the same for everyone else who is searching for a solution.
  2. Sweden, as I've said in the past, I appreciate your feedback and you sharing your ETS story. That said, I do not believe it fair to say that ETS surgery will unconditionaly lead to autonomic dysreflexia. I am over two years post-op and I don't think I am being naive or unrealistic when I say I do not expect any changes. This is my new normal, and I fully expect it to stay this way. I have not experienced anything that would indicate otherwise. When doing my research, I had conversations with people who were 5-10 years post op and still happy that they had the surgery. I communicated with a women who told me that both her and her daughter had successful surgeries and never looked back. Also, I dispute your assertion that all surgeons are in it for the money; it's inaccurate and unfounded. While I'm sorry that you had the outcome you did, it's not going to be everyone's story. Many stories have had a good outcome. So far, for the majority on this thread, and other recent threads on this forum, the ETS experience has been a positive one. We need to celebrate that and hope that others have similar outcomes. As I stated earlier today, making the decision to go through with the surgery was difficult for me. While I am happy that I did it, I am not encouraging others to follow suit simply because I had the outcome I was looking for; in fact, I see ETS as a last resort after other, less invasive options have been tried. Again, thank you for sharing your story because this forum is a place for each of us to let others know what has worked and what hasn't worked. I look forward to the day when this condition is actually recognized by more physicians as the physiological disorder it is so that more research can be done. Until then, we need to share our successes and failures in order to help each other.
  3. Hi all! I thought I'd provide an update since it's been a few months. I'd also love to hear an update from Jamie, Harry, and Scarface (and the others on this thread who pulled the ETS trigger). I hope you are all faring well. I don't have anything new to report, which is a good thing. I remain extremely, exceedingly, exceptionally (plus 100 more synonyms) happy that I went through with the surgery. I no longer blush, and any side effects are worth it. As for what those side effects are: I still have a lower heart rate than pre-ETS (again, this was fine for me because I had a high heart rate to start with...now it's "normal"). I may have some CS on my chest and torso since I cannot sweat from my face, but it is hot out, and people sweat, and I don't know if it's really that much more than pre-ETS. What I was told about the CS is that, if that you can no longer sweat from a particular area because of ETS, the sweat is going to have to come from somewhere else. I was never a heavy sweater before, so CS is not really a problem for me now. I have noticed that the skin on my face is drier than pre-ETS, but with some weekly exfoliating and a good face cream, I can keep it in check. I still don't flush after exercise. Pre-ETS, my face used to get all red and blotchy and stay like that for a while. With no flushing, and since I can't sweat from my face, I don't even look like I've worked out! And of course, the best side effect: no blushing. It has opened up so many opportunities for me, professionally and socially. I couldn't be happier with the results of my surgery, and I am thankful every day that my story is a success story. That said, while it is easy for me to be thankful that I had the surgery, I want to acknowledge that it was a veeeerrrry hard and scary decision to make because the outcome was never a guaranteed success. I hope you all find what works for you because, to put it frankly, this blushing disorder is bull****. It upsets me that I had to spend the majority of my life dealing with it, and it upsets me that some of you are still struggling with it. Keep the conversation going because, although you may never know it, something you say or recommend may end up being a huge help to someone else.
  4. Give it time jayster999! Just let your body adjust, recalibrate, and then give it a go out in public. Slide a little compact mirror in your back pocket or take a selfie when you feel that familiar flush. It may just be phantom blushing. Fingers crossed!! Let us know....
  5. I only had the T2 cut. Good luck Jayster999 and Harry!! Looking forward to hearing about your experience.
  6. Hello all, it's me!! I've had several messages over the past year asking for an update. Since I am the one who started this thread, I feel that it's only fair that I provide occasional updates, so thanks for the reminders!! Unfortunately (or fortunately), I am not on this site often anymore because I am busy...busy getting on with life and not blushing that is!! ...Sorry, that sounds braggadocios and that's not what I'm going for here. I am really really grateful to have had this site during my ETS journey and am eternally grateful for all the encouragement, support, and feedback from fellow members. I do not have much to say in the way of an update because not much has changed. I am still blush-free thanks to ETS and, as you can all imagine, it's a life-changer. I don't mean to sound like I am a "new me," just the same old me without the blushing and, thus therefore hence, without the limitations that blushing imposed on my life. Based on the many messages I have received from fellow members, I know that this thread has been very helpful to a lot of people, not just my story, but the stories of all those who also contributed to this thread. To that end, I say: keep it going!! I know that ETS is not for everyone, and also not always available to everyone. I hope that everyone who has had success in beating this condition feels comfortable adding to this thread so that future members may find some treatment/intervention that may also work for them. As alway, best of luck to everyone and thank you again for how supportive, honest, and vigilant you all are. Post away, we all look forward to reading your stories.
  7. Lol FedUp. Any normal person would have literally dug a hole and crawled in, but post-ETS: bring it on! Actually, I jest. I keep replaying the moment in my head and it keeps me up at night digging that proverbial hole...but at least I didn't blush! (Translation: I looked like an a-hole but my face didn't betray me). I guess it's a testament to the fact that while we may be able to cure our FB, we are still human and not immune to paralyzing embarrassment and internal reactions to situations that are completely beyond our control (surgery or not).
  8. Just checking on the thread and glad to see that some people have found some relief! All is still good for me post-ETS. Things have kind of settled in and self-regulated. While my heart rate is still slower than it was pre-ETS, it's not as slow as it initially was in the first few months post-ETS. Also, those warm hands didn't last; my Raynaud's is back in my fingers. Today it was only a bit chilly outside and I had two purple fingers and one corpse-white finger. Oh well, warm hands were nice while they lasted (to his credit, Dr. Gorenstein had said that the warm hands might not last). The FB is still a thing of the past. I recently had two events that would normally have been very blush-inducing: one was jury duty where I had to speak in front of a room of people and the other was a terribly embarrassing incident that would probably make you roll on the floor with laughter if I shared it. Suffice it to say, I was able to manage both without a blush. I am still forever aware and grateful of how many times I'm not blushing when I normally would have. Old habits die hard and there are still times when I feel that I've entered into a blush-inducing situation, only to be pleasantly reminded that that doesn't happen to me anymore. I couldn't be more sincere when I say that I wish the same for each and every one of you because I know the pain of living with FB, and I now know the joy of living without it. Keep the dialogue going and keep posting all the things that work. Best wishes...
  9. Ryan, that email is strange. I would hope that it was one of his assistants responding. The line about "it is very expensive and of course it could ruin your life" is very puzzling. I am not sure if he is trying to discourage you or down-right scare the bejeezus out of you. You need to really listen to what your gut is telling you about which surgeon is the one for you.
  10. Steven, her teachers have reported it to me during parent-teacher conferences for as long as I can remember. They have said the same about my three other children as well. My other kids are boys and I have yet to discuss it with them. I will, but like I've said way back in this thread, when I accepted this "disorder" as being real and being something physiologically based, it got worse for me. I hate the thought of making it worse for them at such young ages. I don't know if there are any medical interventions we can even try at this point. I think they're even too young for any meds (boys are 8, 11, 14). I have put a call out to a psychologist but I am not very confident that that is a solution. Arg, so aggravating. I feel so guilty being "cured" when they are still living with this.
  11. Wow, this thread has really been busy since I last checked in. I would like to say thank you thank you thank you to all those who have posted their experiences, and to the administrator for moderating this forum. Without all of our input and stories we would not be able to make well-researched, well-informed decisions. Each post adds to our arsenal of weapons against this ridiculous disorder. I don't have much to report on my end; still very very pleased with the results of the ETS surgery. I would do it again in a heartbeat. Speaking of heartbeats, that side-effect seems permanent, i.e.: significantly reduced heart rate. As far as the warm hands: meh. Dr. Gorenstein had said that the warm hands may not last and either he was right, or the winter weather setting in is just too much for my hands to handle. I'm back to having cold hands, although not as cold as pre-ETS. Blushing, still nearly nonexistent. I have had two and only two episodes where I felt a blush coming on. I was devastated, truly devastated when I felt it but each time it lasted only a second or two and then went away. What my face actually looked like I'm not sure because it came and went so quickly that I didn't have time to find a mirror. The fear is still there though; funny how old habits die hard. I finally talked to my 12 year old daughter tonight about my blushing history and, as I had assumed, she suffers from it as well; she just hadn't told me, like I had never told my family or friends. It just about broke my heart in two to hear her tell me about how kids in class tell her that she's as red as a tomato and about how she'd love to go to pep-rallies at school but she won't because she knows she'd be the center of attention, if only for a minute or two. She talked about all the times she has wanted to answer a question in class but won't because she knows she'll blush and how it's so hard to lose points from her overall grade point average (for which she works sooooo hard) for "non-participation." She is a fantastic kid. I know I'm subjective, but really, she's truly fantastic. She's smarty, clever, funny, witty, athletic, adorable. What do you do when a 12 year old pours her story out and you don't even need to hear it because you've lived it and you know how hard it is? How do I help? How do I send her off to school everyday knowing how painful it is for her? I hate to know that she is living with the same limitations that I did. She is capable of so much but she's fettered by this condition. It kills me because I know exactly how it feels. She agreed to go speak with a therapist about it but I don't know if I am making it worse by drawing attention to it. (*sigh*) I was actually wondering how young was too young for ETS.... I'm not seriously considering it; I only wish she was free of this. Keep posting. Keep each other informed. Keep making informed, educated, rational choices about treatment. Let's hear more success stories.
  12. So glad the surgery went well monkey; wishing you many successes. Keep us posted please!!
  13. What fears we endure from evils that never arrive. We can often be our own worst enemy. Pre-ETS, I had visited the ETS and reversals website, I had had dialogues with people who had had some very negative experiences post ETS, and I had discussed the risks with my surgeon. Like I've said before, I knew what I was getting into and I chose to not let other peoples' stories be my only possible outcome. I chose to believe that any trade offs (CS, GC) were worth the risk. My roll of the dice paid off. That said, I was a bit paranoid after the surgery; I attributed every pain, drop of sweat, and momentary discomfort to the ETS. One of the myriad things I worried about was that I was maybe sweating a little more than usual, but in reality, the period of time during which I was doing the bulk of my observation was summer time and everyone sweats in the summer. It was trying to determine if I was perhaps sweating more than usual but I never really paid attention to trying to quantify my sweat in the past, so I really had nothing to compare it to. I also reminded myself of what one of the doctors told me: if you stop sweating in one location, it's got to come from somewhere else. I then reminded myself of the most important thing: I no longer blushed. Period. It is that simple for me. It has been a life changer. I have been unfettered. I understand that some ETS patients are very upset by their compensatory sweating but we need to remember that we have all been very VERY upset by our facial blushing. It's why we are all here. I am encouraged by the recent posts from people who are having conversations about ETS with doctors and surgeons... or rather, I guess I should say reluctantly encouraged because I know there are inherent risks associated with this surgery, or any surgery for that matter. I encourage everyone to do their homework and have a thorough conversation with their doctor. At the risk of repeating myself, I want to again state that the most significant side-effect for me, aside from the elimination of FB, is that my heart rate is significantly lower at rest and during exercise. The surgery had a beta blocker effect on me. I had had a very high heart rate to begin with so the surgery ended up making my heart rate more like that of a normal person. Had I started out with a normal heart rate though, the surgery could have resulted in me having a dangerously low heart rate. Food for thought and something you may wish to discuss with your doctor. I wish everyone the best and look forward to hearing everyone's ongoing stories. Thank you all for your honest and thorough posts. It's nice to be a part of such a supportive community.
  14. Good luck with your appointment Ryan, please fill us in on how it goes. Update: It has been nearly 6 months since my surgery and I still have no regrets. I am so so so happy with the results. I really feel like I have a new lease on life. I am able to function like a normal human being (i.e.: myself) and not have any FB interference. I assisted in presenting at a seminar last night and FB didn't even cross my mind. Imagine? I experienced the normal jitters that one might have when presenting in front of so many people... maybe I spoke too quickly, maybe my thoughts were a bit muddled... but I was able to get past that and not once did I worry about FB. I didn't feel a single flush. It's truly like living the life of my dreams. Now, having said all that, a weird thing happened to me at work the other day. Like I said, I do not blush anymore, I have no urgent need to escape from a conversation, I have no feeling of a blush building from my neck up. BUT a few days ago at work I had a run in with a colleague that I am training who really tried my patience. I am normally a very patient person but she pushed the right buttons with her ridiculous questions and inability to grasp simple concepts... and I lost my temper. This all happened over an interoffice email and a subsequent phone call. I was extremely aggravated and the colleagues in my immediate proximity knew it. One of them looked over at me a said "Oh my God, look how red she is." To say that I was shocked would be an understatement. I was not at all feeling flushed and I was in such a state that even if this had happen pre-ETS, I wouldn't have blushed because I had simply turned into the Hulk at that point. Angry but in control. I don't know if any of you have ever experienced this but sometimes, pre ETS, if I got mad enough, I was immune to blushing because I was in "let loose" mode. Anyway, this time, I didn't feel hot, or flushed, and hearing someone say "look how red she is," rather than put me in a state of panic, just kind of surprised me. In retrospect, I wish I had jumped in front of a mirror to see what the heck she was talking about but... and this is the best part... I really didn't care. I know that I don't FB abnormally now, so if me being angry causes me to flush/blush, I really don't care because I don't feel it and it won't send me into a state of panic. I'd rather be someone who becomes red with anger (rarely) than red for absolutely no reason. I chalked that experience up to normal redness and not abnormal FB.... Other than the above, I have had absolutely nothing to report... and I think that's a good thing.
  15. mugsy

    ETS emergency contact

    I would think yes. There must be someone you can tell, no?
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