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mugsy

FB. Enough is Enough. Meds vs. ETS?

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Ok. I've gone and scheduled the ETS surgery. Pre-op testing on 4/7 and surgery on 4/13. I just sent an email to the surgeon to let him know that I am schedule and to inquire about the recovery period. He only does the surgery on Monday, which is really tough for me because I'm so busy at work that it's hard to take time off.  Also, I was hoping to slip away and have this done on a Friday so that I can recover over the weekend. I work in an office full of women and we are, by nature, nosy curious. Time to create my back story about my whereabouts from 4/13-4/15.

 

David, I think your procedure is before mine, which, of the two of us, I'm afraid makes you the guinea pig. Please post as soon as you can after the procedure so we all know how you are doing (and I can glean some information about what to expect!). Fingers crossed for you. 

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Hi all,

Sorry I'm only just catching up. To answer a few questions, I'm getting it done on the NHS, I'd sooner not say where or who by just in case anyone pipes up with a horror story and puts me off (you never know!). But I assure you I'll keep everyone up to date after the procedure - less than 2 weeks to go eeek.

I'm ok really, all seemed very straight forward after seeing the surgeon and he said he has performed this operation several many before for both hyperhidrosis and facial blushing. So here's hoping it does more good than harm. Bronte, my surgeon was probably the only person I've spoken to who I feel really understands the condition. He explained it simply by saying we all have an internal thermostat and mine is just set that few degrees higher than most.

Well done for booking in mugsy! I've got no probs being the guinea pig... I'm a "bull by the horns" kinda guy deep down, who dives right in... I just go bright red when somebody asks me a rudimentary question ;-)  

I go in on the monday, have the op on the tuesday and i'm out on the wednesday. Surgeon advised me to take a week off work to fully recover so I've told my boss the truth about everything and I told him just to tell the rest of the office that I've got a nasty virus or something. Et voila! So I'll probably be that bored at home that you'll be hearing from me soon afterwards with an update!

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Good luck. But guys ask about getting the T1 nerve cut. Been some talk on another forum about that's a higher chance of better results but also higher chance of Horners syndrome. Just want you to get the best results.

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aj-87,

 

My MD won't clamp T1 because of Horner's, but he did acknowledge that may be where the problem lies. If my FB is a result of T1, then ETS may be ineffective. Chance I'm willing to take though. 

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Hi everyone, How do you manage to live on everyday basis? For me every day is a struggle, I have no boyfriend, no friends, i'm living alone, I'm dreading to go to work.I feel i can no longer live like that, that's why i'm also willing to give ETS a go as last resort, David please let me know how did you manage to get this surgery on NHS, I'm also from UK. You are so positive about it. I hope it will work out for you.

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Hi Anna,

 

First off I'm sorry to hear how much this horrible condition is affecting you. And as a sufferer I can honestly empathise with you. I suppose I've had this problem so long that I've just grown used to it. Although that's NOT to say I don't hate it, I've just adapted my life around it.
 

I often dread work too, mainly on the days where my symptoms are most prevalent. Like whenever I have to attend meetings or contribute to presentations where I feel all eyes are on me and I begin heating up and sweating like mad.

 

I’m seeing the ETS as the last resort too, but only because I’ve exhausted all other options. I’ve known about this operation since 2002, so I’ve always had it in the back of my mind if I never grew out of this condition, or if it got worse, or if other treatment failed. And as I’ve said previously, if it doesn’t work, I’m hoping it will at least give me some closure that this is something I must learn to live with for the rest of my life.

 

Even imagining life without that nagging "ooh am i gonna go red now" thought in the back of my mind every day seems absurd at the moment. As I type this now, I have my desk fan on full in my face because the office I work in is so warm. Well, it’s warm to me – everybody else looks all pasty and calm whereas my face feels on fire, as is usual in the office. It’s almost like I’m at a constant heightened state when I’m here.

 

As I’ve mentioned in earlier posts, when I first saw my GP about this in early 2013 we agreed I would try all the advised medications (beta blockers, clonidine, diazepam, paroxetine), all of which did nothing, together with some Cognitive Behavioural Therapy. I’ve done this over the past two years, so my GP knows I’m not taking this lightly, and was happy to refer me to a thoracic surgeon who performs this on the NHS.

 

I’m only positive because I still have hope that this op can help me. Who knows, in three weeks I may feel completely hopeless, or completely pasty and “normal” like everyone else. It’s all a bit of a gamble isn’t it.

 

One worth taking though, for me.

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Glad this forum finally has a bit of activity, its lay dormant for a while, the more we communicate the better off we'll all be in terms of learning from each others experiences and hopefully gaining ground on 'curing' this.

 

Do you have HH as well David? I know what you mean about being in a heightened state; it is very hard to relax when our minds are constantly looking out for the next possible threat of blushing (does anyone else really hate saying/typing that word??).  Have you looked into botox at all? I know Dr Patterson at the Woodford clinic is probably the most well known for this procedures.

 

I know it sounds very cliche, but I think I would achieve so much more in my life if this wasn't holding me back. People take it for granted that they can approach others, or give speeches or even just speak up for themselves in meetings.

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I'd say I'm generally sweatier than most people in the summer months, mainly on my face and my back.

 

But the situational HH only really started accompanying my FB since early 2013 where I was in a small hot meeting room, put on the spot, and completely lost it, almost like I was having a panic attack. I flushed from my face and began sweating heavily from my forehead, cheeks, back of the neck, chest and back... so much so that it was soaking through my shirt within minutes, a little like that Walter Pandiani interview a few years ago (which feels very uncomfortable for me to watch) https://www.youtube.com/watch?v=qhFXb6OJh_w.

 

Yes, my inability to relax when I know an impending blush/sweat situation is approaching is something that I despise. That feeling I get when the little outlook meeting alert pops up in work, or even when people send me a link to a job that would be "ideal for me" and I envisage sitting in a small room, completely under scrutiny being unable to escape. Makes me squirm.

 

The whole "being held back" thing careerwise is what has propelled me towards having this drastic operation, as I too feel like I would be achieving much more if I could remain in control and blush/sweat free at all times.

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Wow. Just watched that interview. That is extreme hyperhidrosis. The poor guy - although he seemed totally unphased by it. My first thought was, for someone with HH, that is a very poor colour to pick! My wardrobe is pretty limited colour wise ....

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Holy cow David, that interview was hard to watch... so I didn't, I just forwarded it at one minute intervals and watched his shirt get wetter and wetter. BUT, Beetroot is correct in that he didn't appear phased by it. He also didn't seem to try any escape tactics, and what I noticed most of all, he didn't blush. He just seems to have HH, not FB. 

 

On another note, I told my GP that I was going forward with the ETS and she is not totally on board. She thinks it is very extreme, and of course she's right. I'm off the propanolol and Xanax now because neither worked. She suggested that I just try this: "how about when you enter a meeting you just announce to everyone that sometimes my face goes red but don't worry about me, I'm OK."  Imagine? Needless to say, I did not try that and do not plan to.  She doesn't get it.  :(

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Yes it is extreme, but it's great the way he just gets on with it. Deals with it head on. There is some editing too and you can see he has a towel handy so he must be drying himself in between cuts, and it doesn't seem to faze him. I don't speak Spanish but I guess at the end one of the journalists mentions it and he just laughs and points into the air. Probably saying "ah I always get sweaty under these hot lights" ... can anyone translate?

 

I agree mugsy it is hard to watch, but I too noticed he doesn't blush at all. It's interesting how some of us get the sweating, some the blushing, some both and some neither. Humans, eh!

 

I must admit I had a little laugh at your GP's recommendation. Can tell she's had little to no experience of dealing with this condition. Having to announce to everybody that sometimes your face goes a bit red... jeez. Why should we have to?! Would she tell someone with depression to announce to everyone that sometimes they feel a little down in the dumps?

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The woman in charge of scheduling at the surgeon's office called me yesterday and told me that she double booked the surgeon for 4/13 and I would need to change the date of my surgery because another woman is schedule for the first surgery of the day, and the other woman booked in before me. Crushed. My office has some big projects going on and I can't take any time off because I really need to be at work 5 days a week. The earliest I would be able to do it would be mid-summer. I was awake all night wondering if maybe this happened for a reason, and maybe I shouldn't go through with the surgery. This morning the same woman called me and told me, whoops, there was no other woman, it's me she has scheduled for the first surgery on 4/13. Good Lord woman!! I don't need any more anxiety! 

 

On another note, while this "disorder" affects me on a daily basis and limits me in my choices and actions, I am able to lead a fairly normal life, i.e.: I'm married, I have children, I have a job, I socialize. Again though, I am very careful in what I say and do because I know I will flair up at the drop of a hat. Having been like this for as long as I can remember, I'm sick of it and want to be able to function in a day without having to think out EVERY word I say and EVERY action I take (or don't take). Yesterday someone pointed out (twice) that I was blushing and so did some random woman and my friend's birthday party (slap slap). Neither time did I feel the blush which is unusual. I so want to be free and be able to speak and act without worry. But what is more upsetting to me, is that my 10 year old daughter's blushing has gotten worse. Her teachers have been telling me since she was in Kindergarten that she blushes whenever called on, but now I hear her friends telling her how red she's getting. I don't know if there is any way I can help her or if bringing it up to her might make it worse. I know there is nothing anyone could have said to me to make it better when I was a kid. I also feel bad ignoring it. I have asked her if she ever feels any anxiety at school but she says no and won't say anything further.  For those of you who blushed as kids, do you have any advice for me regarding how to approach her about this? Or can you think of anything that would have helped you when you were younger?

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Wow mugsy. That's a tough one. Think we were already aware it had a genetic component to it. I think if it was me then I woudlnt try and make a big deal of the blushing but I also wouldn't try and play it down - I remember speaking to my parents about it when I was a teenager and they basically told me not to be so daft. I would just speak to her and make sure she knows that if she ever has any problems or issues in school then she can talk to you about anything. That way if she starts to have issues with blushing she can start that conversation without you planting the seed it could be a problem in the first place.

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Hello guys, im not going into full details as youll all be well aware im here for the same reason as everyone else.

Booked in the GP about my problem before christmas and she wasnt really that helpful, prescribed me some new cream she said that helped redness. No good, made it worse in cases. Since then done my research on other possible ways, i came across ETS a few weeks, sometimes excited about the idea, sometimes a little heldback because of the side effects. Saw the same GP again yesterday, told her that it was getting worse, she came across very stubborn ( she is also a dermotologist) about the fact i came back and quickly made it clear she was going to refer me. Booking my referral on Tuesday.

I will be following this topic for your ETS surgery results, good luck to you guys. Ryan

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Having had ETS sixteen years ago for hyperhidrosis, my advice to anybody would be to not have it done.  The side-effects that I've suffered over the last thirteen years have been horrendous.  The nerves that they cut are important parts of our bodies and serve many functions, they are not designed to be severed!  That's my view anyway.
Best of luck whatever you decide to do.

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Well mugsy, I've done it! Your guinea pig passed the test... so far!

Came into hospital yesterday for observations and had the op 5 hours ago.

As my first op, I was a little anxious but they gave me pre med pills to help me relax and a morphine button now I'm back in the ward.

All I remember after waking up is a lot of tightness in my chest which made it hard to breathe. But once my chest drains were removed it soon became easier to breathe. Even now it's a little hard taking deep breaths so I'm staying overnight again so they can keep an eye on me.

First impressions are that my upper half of my body is completely dry, hands dry, pits dry, head dry, and face feels cool and only slightly pinkish, which is its natural colour after so many years of blushing.

Very early days I know, but just a quick update to say all went well with the procedure and im looking forward to charting my progress in the coming days and weeks.

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David, please keep posting how are you feeling. Well done you for being so brave, !! recently I read article that 90% of those who had surgery were satisfied with results, I also have appointment to GP i will ask for referral

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Well done David! If there were 20 of me, we'd do the wave! I am very happy things went smoothly during the procedure (and wickedly jealous that you have jumped the hurdle and left me behind  ;)). Yes, please keep us abreast of your progress and post-op symptoms (or lack there of). Here's to a speedy recovery. 

 

IJR, thanks for your comment. I am sorry you have had such bad side-effects from ETS. If I may ask, was the ETS at all effective for your FB and/or HH? I know there are many stories like yours and I appreciate your feedback. I know the risks, but with no other effective solution, I've decided to press on. That's not to say I'm not panicked and totally second guessing my decision. Yesterday I went to my dermo to again inquire about botoxing my entire face (so what if I never smile or move by eyebrows again). I was a walk-in and she couldn't see me so I left a message and she hasn't called me yet. Anyway, I'm willing to take the risk if there is a chance that ETS will work. It's my last hope. 

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Thanks for all your responses everyone. As promised here's another quick update...

Well first night over with. A little uncomfortable breathing at certain points but a little press on my morphine button sorted that. I've also been on IV paracetamol through the night for additional pain relief. Breathing now just feels a little achy at the top of each breath but improving every hour.

Had some food before bed last night but it was hard to eat due to all the tubes in my hands. Appetite was ok though and I have been drinking lots too... had a very dry mouth which I'm told is because of the morphine and the fact I couldn't drink anything yesterday.

Still feel completely dry with regards to the sweat and my cheeks have not felt flushed at any point which is a welcome relief. So still pretty optimistic, despite knowing that many have a final outpouring of sweat and /or blushing as the body adjusts to the surgery.

I'll update again by the weekend, and would just say to those scheduled in for the op or thinking about going for a consultation that it's honestly not that bad. The most nerves I had were just before I was put to sleep and everything after that has been complete relief.

Here's hoping it lasts.

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