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mugsy

FB. Enough is Enough. Meds vs. ETS?

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I'm getting a little nervous now after hearing about your first night in hospital David. My surgery is ambulatory which means I get sent home right after the procedure. No morphine, no IV, no nothin'. Just surgery followed by a bumpy car ride home to a house full of crazy children. Hold on, I need an emoticon for that...  :blink:  (me bugging out).

 

Pre-op testing is tomorrow. Yikers!

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Hello all, well it's 4 days since my op and my third full day at home... things have been fine. Still a little awkward doing things with these stitches in and the compression socks on but I get the stitches out in six days and I'll be taking the socks off when I return to work on Tuesday.

To update my condition.... today is the first day I've noticed ANY sweating above my nipple line, and it was the smallest slightest bit of moisture (not even actual droplets) in my left armpit. I also noticed my first compensatory sweating, with the soles of my feet slightly damper than usual earlier on today (wearing flip flops).

On the blushing side of things, I've not really been in a situation where I've normally felt my cheeks burning, so I'll be able to tell you more next week when I return to work. Quite looking forward to my first meeting to test it out. There is still some warmth in my cheeks though, which are naturally pink anyway due to years if blushing, and it still feels like I have the ability to go bright red, but it's not yet happened. I've read all sorts about "phantom flushing" though so presume this is normal.

And the last thing my surgeon told me is that I will need to see him in six weeks... and that it will likely take my body that entire time to adjust to life after surgery, so any initial sweating/redness (if it happens) i wont be taking too seriously.

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Im so tempted to give it a go and have this surgery done ! Im tired of struggling with it every single day, today i blushed i think more less 10 times on different occasions at work without any reason, i feel like total idiot, it makes me angry and frustrated. 

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OK David et al, it's over, or just beginning, I'm not sure which. I went in for surgery at 8:15 this morning and was in recovery by 9:15.  I had to stay for four hours of observation and post-op testing and now I'm home resting uncomfortably (yep).

 

In a nut shell, I was a nervous wreck this morning (only on the inside; my outside was a shell of cool collected confidence... and blushing). I tried just going through the motions and not really thinking about the rapidly approaching surgery. "Oh ok, put this surgical gown on? That's cool, I do that like everyday." "Answer repetitive questions from myriad attending anesthesiologists, surgeons, and all their residents and nurses while in said surgical gown? Totally normal for me." "Put all my belonging in this little plastic bag and maybe never see them again, or, see them again as someone with terrible irreversible nerve damage? No problem, you said shoes on the bottom, right?" And so on.... I'm not saying that to scare anyone, just sharing my reservations. But then I did it anyway. 

 

It was really not that bad. The surgery was quick and I don't remember a thing of course. I have two incisions under each armpit (not sure what they look like yet). Woke up from anesthesia without incident. A lot of people have written about how they first noticed how dry their hands were. I have never had any HH so my hands are normally dry. That said, they feel super dry now. Like I've had them under a blower. And they're really warm which is unusual because my hands and feet are always cold (feet still cold). What I noticed when I first woke up was the pressure on my chest. I've read people say it's like a truck on their chest. Not like that for me at all. More like a very small baby elephant... and just one foot... kind of resting there. Or to put it into terms you can maybe understand, kind of like a 6 year old standing on your sternum (that actually happens to me sometimes). Not that bad. Just pressure. I can take a deep breath but it's uncomfortable to do so. I have very little pain, if any, at the incisions, only the tightness bothers me, but I'm confident it will get a little better every hour. It's definitely uncomfortable but not painful or unbearable. I declined any pain meds at the hospital with the exception of Tylenol and do not plan on filling my script for percocet. I'm kind of an au naturale gal (stopping just shy of martyr... so I am keeping the script handy). 

 

Oh, one small complication, although the surgeon didn't seem at all concerned about it. I have a small pneumothorax. When I googled it while in recovery, the first thing I saw was "pneumothorax (collapsed lung)" and thought gee, that doesn't sound good. But I was told it's not uncommon after surgery and it's when a little CO2 remains between the lungs and chest wall. The air pushes on the lung and makes it "collapse" (but in my case just a little bit). Apparently, it works its way out on it's own and is not cause for concern or action. I don't even need a follow up chest x-ray unless I have persistent shortness of breath.

 

Regarding the actual procedure, prior to the surgery the surgeon and I again discussed clipping the T2 nerve versus clamping. I asked about what those titanium clips will look like (and where they'll have floated off to) when I'm 90 years old. Long story short, I gave him the go ahead to clip, not clamp, and that's what he did. I know that clamping allows for the potential for reversal within the first few days but I guess I was being optimistic. He reminded me that the clamp causes the nerve to atrophy and stop functioning, clipping obviously severs the nerve, causing it to stop functioning, so I said "then just clip the suckers." Famous last words?  We'll see........ 

 

Regarding, FB (which I know is why we're all here), I have yet to test it. I was kind of loopy after the anesthesia so I've yet to have an opportunity to put the pedal to the metal and don't think I will until I return to work. The surgeon is not conservative at all and has an "if you feel ok, do it" kind of attitude. He said I can return to work as soon as I want as long as I feel ok. That also applies to exercising, eating a normal diet, driving, and everything else I asked him about. I am looking forward to getting out in the world with my new face. Fingers crossed that I have the results I was looking for.  I'll update soon. Feel free to ask me any questions. 

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Quick update for anyone who's interested. Today is day 2 post-op. Breathing easier because I have less pressure in my chest. Incisions are a little tender which makes me afraid to lift my arms (shampooing is a challenge as is getting anything from a shelf above eye level). I went out yesterday afternoon to my son's doctor appointment (didn't drive) and just moved gingerly. Today I drove myself to my GP because I was certain I had strep throat (it's not strep, maybe just irritation from the intubation). Overall, getting better and more mobile every day. Only this weird throat/cough thing is bothering me now. 

 

Regarding FB, so far there has been none, none that I've felt anyway. And my hands are still really warm (my second favorite side-effect). No compensatory sweating at all yet but I know it's still early. So far so good!

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Hi Anna I've been back at work three days now and although I've felt my cheeks flush a bit (i work in a hot office), it doesn't look or feel as intense.

My cheeks have a rosy hue about them anyway through the years of blushing and flushing and they're pinkish even when I'm totally relaxed (i think I'll need some laser treatment to get them to match my normal skin tone). But the flushing with the heat has only happened a few times. It was a little disheartening at first as I thought this op would render me completely cool and pallid from the neck up but then it is still only nine days since i went under the knife and I know my body will still be adjusting to the drastic change i underwent.

On the plus side i've been put on the spot a couple of times and remained completely calm in situations where I'd previously feel heat rise up my neck and my heart race... its like my shock mechanism has been completely dulled.

I've not yet been in a proper meeting with the door closed (the situation i previously dreaded most due to intense blushing and facial sweating) but i will be next week so can report back then.

An indicator of how I feel though is that I got a meeting invite and remained really calm as opposed to instant dread and anticipatory anxiety. Which was nice.

Also went out for a meal with my girlfriend's mum, dad sister and brother in law at the weekend and felt totally calm, blush/flush-free and dry, whereas I'd usually feel a bit clammy.

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Another update, 3 days post-op. I returned to work today and all went great. Still sore and walking like a robot who can only bend at the elbows but I mostly sit at a desk all day so it's been bearable. I have absolutely no compensatory sweating yet and my hands are still toasty warm. After all these years of poor circulation to my hands, and freezing cold purple fingers, this is a wonderful (albeit unexpected) side-effect. I had absolutely no episodes of FB today. In situations where it would have normally occurred it simply didn't and I was able to keep my thoughts in order and function as a normal human being because I wasn't distracted by my "flight" instinct. Like David, I have yet to be on the spot in the dreaded closed-door, well-lit room but I am kind of looking forward to it (I'm smiling as I write this because I can't even believe I'm saying it!). 

 

I've noticed my face still flushing if I bend over to tie my shoe, or if I sneeze, or after I wash it. But that's definitely a flushing, not a blushing, and there's no creeping heat involved. Like David, I have a bit of a rosy hue, probably from all the sunburns I have subjected my face to in the past. I might consider V-Beam or IPL treatments but I have yet to discuss that with my dermo.

 

phorbo007, I had my ETS in NYC. You can message me if you want more information. 

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Great to hear you both doing so well. You've both mentioned that the anticipatory nervousness about blushing has gone, would you say this is a psychological thing as at the moment you don't actually think you can blush - essentially you're acting like normal person who's never blushed before.

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I'd say it's still more physiological than psychological, simply because I feel calmer in general; like mugsy said, it feels like that "flight" instinct has been removed.

 

My blushing (certainly over the past two years) was usually accompanied with facial sweating, so as soon as a blush scenario would occur, I could feel the sweat come out and it would feed the blush. Knowing now that I will not sweat from my face has been a great help.

 

As I said in my last post, my face is still warm, and I still appear and feel rather flushed at times, but it's not overawing - and because I don't feel particularly stressed about it, or feel like I instantly need to cool down or fan my face like before, it doesn't make my mind race or want to escape a situation. Again, this is just in my open plan office and not in a meeting or interview (my two former dreads) so I'll need to see how I am in one of those situations for absolute confidence.

 

A couple of other things I've not mentioned until now are: 1. Nerve pain in my back, chest and left arm, and 2. Chiils and goosebumps.

 

1. The pain in my chest is when I cough and feels roughly in the area I believe my nerve was cut on the left hand side. My back pain is whenever I move or stretch and the left arm pain is coming through my armpit whenever I extend my arm or jolt around quickly. It feels like nerve pain as opposed to muscular pain as it's an identical pain to sciatica which I had a few years ago.

 

2. Three out of the past five evenings (twice when at the supermarket) my body has felt really cold and I've needed to wrap up warm with my fleece jacket to stop shivering. I was previously a very warm-blooded person and always just wore shorts around the house but now it feels like I'm feeling the cold a lot more.

 

I had my stitches out earlier too and mentioned both to the nurse... she said the pain after surgery is common for a few weeks but if the chills continue for a few more days then get back in touch. I'm attributing the both to the fact that it's still only ten days after surgery, but worth noting nonetheless.

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Yep, I agree. For me it's a physiological change, followed by a psychological change because each time I don't blush (in situations where I normally would), I become a little more confident that the surgery worked and that I am physiologically different now. I don't know that my anticipatory nervousness is gone completely, I am still nervous that the blushing may happen, even though it hasn't yet. I need to still get myself into those really blush inducing scenarios to fully test it out. The difference I've noticed is, yesterday for example, when I was in a conversation and didn't blush (when I know I normally would have) I had this quick internal conversation with myself "huh, how about that, no blushing, guess I can just carry on." I am able to not loose focus and continue on with my conversation. In the past, I would have tried to end the conversation so that I could escape. No blush being triggered equals no panic.

 

Physically, I'm still only 4 days post-op so I still have tenderness at the incisions. Breathing is just about back to normal and throat is on the mend. I don't have any stitches, only little steri-strips over the incisions. I have some numbness/decreased sensation on my chest but I assume it will go away soon... and if it doesn't I can certainly live with it.

 

Like I've said before, my hands are always warm now but, like David, my body feels chilly. That said, I'm always cold. I'm going to be that old grandma who wears a sweater in August. But this chill is a little different. I feel it more in my core and only in my upper body. Also totally bearable if it's something I have to live with. No CS or GS at all for me yet. 

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New development. For the past few days I've had a terrible pain on the left side of my chest. It's deep and definitely not a muscle pain. It's a dull pain at rest and a shooting pain when I move. Today it's even bothering me when I talk. When I sneeze I feel like something might pop. It has stayed steady for the past three days and hasn't improved with each new day as I was hoping. I have no idea what it is and if this is the new normal, it's not good. 

 

My follow-up visit is a week from tomorrow. I am hoping that whatever this is works it way out, and soon. 

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David,

 

The jolting pain is likely from brachial plexus injury.  I remember I had the same thing and it took a long time before it went away.  I still have numbness in my left upper arm to this day.  

 

Mugsy,

 

If your pain is confined to just your chest then I have no idea what it is from.  Sounds pretty normal though; most people say they have some pain the first week.  

 

 

Best of luck to you both.  I'm glad your blushing is gone and minimal side effects...fingers crossed that it stays that way.

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Thanks scarface, I'm hoping it will work itself out. I think I remember the surgeon telling me that he cuts through the pleurae membrane around the lungs during the procedure... but that wouldn't explain why the pain is only on one side. It may be that the small pneumothorax I had on my left lung hasn't worked itself out yet. My follow up is a week from today...

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Thanks scarface, I called my surgeon who said nerve pain in the arm and chest area is very common, and I've been prescribed gabapentin. I'm on day three of them but it's still very sore. It's still very concerning though. The chills have all but stopped.

 

Regarding my FB and Facial HH, I had my first proper meeting in work today with 2 colleagues and 2 external clients, where I could truly put the new me to the test. And the result? I'm about an 8/10 on the happiness scale!

 

I had some slight butterflies an hour beforehand but I'm attributing this to years of feeling this way, but it wasn't disabling or nagging, just a slight nervous tingle. I prepped well for the meeting, like I usually do, and upon walking in, felt confident doing handshakes and introducing myself. No racing heart or instant forehead sweat as would usually happen. I felt calm. And it felt weird! But good weird! So the meeting began and i felt my left armpit sweating loads (I've worn a black shirt just in case), but absolutely nothing from my head.

 

I also felt my left cheek go really warm and it felt like a flush. Not burning though, and not enough to make me flustered or panicky as has happened in the past. In fact my entire left cheek, forehead and neck felt warm to the touch... while in comparison absolutely nothing at all from my right cheek, which felt totally cold throughout - almost like one half of me had been rendered cool but the other half not. I felt like I was getting a warmer and sweatier left foot too and the back of my left thigh felt a bit warmer and moister than my right. Only really for the first ten minutes though, and then once I knew it wasn't going to completely get me into a state of sweaty panic, it seemed to go down.

 

Who knows, maybe these left-sided nerve pains and heat/sweat symptoms are a sign that something didn't go quite right with my left hand side during the op? I have my follow up appointment with my surgeon in three weeks so will see how it progresses by then and I'm keeping a diary to chart my progress. I feel like my own science project.

 

So I scored myself 8/10, because it wasn't perfect, but it was light years ahead of how I've coped in previous meetings. I actually feel for the first time in years that I have the confidence to go for a job interview without totally falling apart!

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It's been 10 days since my surgery and NO BLUSHING. Nothing. Not at work, not socially, not at the market. It's amazing. I have to assist in presenting at a conference the first week in May so that will really be the big test. Also, not a drop of compensatory sweating... or any sweating for that matter. I'm quite shocked about that but, like I've said, I was never a sweater to begin with, just a blusher. I haven't worked out yet, so maybe when I do I'll notice that my sweating patterns have changed. And my hands are still toasty warm (bonus!)

 

Regarding physical recovery, if my left side felt like my right (which is perfect) I'd be doing cartwheels, but I still have this intense, deep, nagging pain on my left side. It's in my chest just a few inches from my under arm. It's fine at rest but it hurts when I lift something with my left arm, hurts when I take a deep breath, hurts when I cough, and sneezing is crazy painful (and each time I sneeze, I'm quite certain I've popped something). I also still have a bit of that throat thing/cough left over which makes me cough all day.  I am convinced that the throat thing is from intubation, the chest pain, I have no idea. 

 

Overall, as far as the surgery accomplishing what I wanted it to, I am 100% satisfied. However, add the pain in and it brings it down to about 70%. I can function normally in a day with the pain but it's always there. I haven't been able to work out, sleeping is uncomfortable, and I'm careful with my movements during the day. I go for my X-ray on Monday and am actually hoping that it shows something so that it can be fixed. Updates to follow. 

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Ryan, I had mine in NYC. You can message me if you want to discuss it further or get more details... but I think most of the information might even be in this thread. Good luck!  If you go through with it, maybe you'll consider sharing your experience here as well.

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