Jump to content
FedUp77

My ETS Story: from surgery day through recovery

Recommended Posts

Hi everyone! I've read this chain of posts as well as many others and I want to thank you all for sharing your experiences. When I first read about ets it sounded so barbaric and the stories were so negative. I never thought I'd ever consider it, but this forum has given me hope. 

So I'm now scheduled to have ets with Dr Gorenstein later this month! My insurance company has also approved it ?and is supposedly covering it.

Anyway, I have a few questions that I hope you all can answer for me....

1) like everyone else I'm afraid of the post-op CS. I was wondering does it ever happen in place of blushing? Like if you are in a situation when you would have normally turned red, do you now start sweating instead? Or does CS just happen because of change in temperature, weather, clothing?
 

2) Is CS, the inability to sweat above the neck, and the pruney hands previously mentioned- the only lasting side effect(s)? Or do any of you have others? I guess I'm specifically concerned about any other neurological side effects like twitches, pains, etc. Ive had 2 pinched nerves before. One of which is bothering me again these days. While not in the thoracic cavity, its close and I fear something else can happen. I know that I also have to ask Dr G that. 

3) Finally, how many days did you take off of work after the surgery??

Share this post


Link to post
Share on other sites

sadblusher- How exciting! What a relief that you know it is covered by your insurance company already too. When is your ETS surgery date? 

1. My CS is due to my internal temp, it is not at all related to times when I would typically have blushed. If my temp starts to get even a little warm (since I no longer have to ability to release heat/sweat through my head) I will quickly become overwhelmingly hot and the upper back, cleavage, bum, back of the knees and front of the ankle dripping begins. I can not sweat at all from above my neck. If I take off a layer of clothing or find a cooler environment, the sweating will lessen and then stop as my internal temp comes down. 

2. CS, pruny fingertips (much more so when it's humid out), and a drop in resting heart rate are my only lasting symptoms (as of now). No nerve twinges or pinching. Although I did experience numbness on the surface of my left breast for a couple of months following surgery, it dwindled slowly until it was thankfully completely gone one day. At first I was worried that it was a permanent side effect thought, which made me very nervous because it was not a pleasant feeling.

3. I had surgery on a Wednesday morning and went back to work on Monday. I would not have been able to work Thursday or Friday, no way. I was in a significant amount of pain, had a very heavy chest, and had to sleep upright for a few nights. 2 days following surgery I most definitely was experiencing painful symptoms from a pneumothorax, which thankfully self resolved withing 48 hours (with some careful management at home). I am a nurse and could identify the crunching sandpaper feeling on my left side and inability to take a deep breath. It was excruciating for about 12 hours...and I'm tough, had both of my children with no pain meds, and never take anything more than Motrin. 

I hope that helps, I wish you lots of luck and will be thinking of you. Feel free to pick my brain any time!

Share this post


Link to post
Share on other sites

30_YearsFB- At this point I have more days when I am happy I did it than days when I think I maybe shouldn't have. That is where I am now. I don't have a definitive answer yet, I'm not sure when or if I ever will.

The CS is a nuisance but the lowered heart rate is what I often worry about. A resting heart rate of 42 is not something I am confident is ideal since I am only 39 and worried that it could get even lower with age. I'd hate to have lightheadedness, forgetfulness, and lethargy as a result of my lowered heart rate, and possibly even have to get a pace maker in the future due to those symptoms. I don't have any ill effects at this time other than not being about to get my heart rate higher than 140, even with intense exercise. Which I am not even sure is a bad thing.

I also feel it's important to mention that I blush much less often and less severely, but in very stressful situations I do still get blotchy on the outer aspects of my neck and the sides of my chest, and even a 1inch x3inch patch on my left jaw line. It is much much improved, but it is still there. I am hopeful that it will remain at this intensity and not continue to get worse. It has happened 3 times since surgery 4 months ago. I used to go maroon red from splotchy to entirely filled on my chest, cheeks and chin when things were at their worst. I would guess my severest blushing happened once a week with less severe episodes happening daily before ETS. 

The side effects and the fact that it's not completely gone keep me from a definitive answer of being pleased with my results at this time. 

Hope that helps and wishing you all of the best.

Share this post


Link to post
Share on other sites

Thank You very much for Your's answer but now I'm to drunk to translate it  , I'm really think about ETS , I will back tommorow , sorry for my spelling  when I write but I undersand almost everything what You wrote about Your story , thank You

Edited by 30_yearsFB

Share this post


Link to post
Share on other sites

Fedup77 thank you so much for your reply.

Im having the surgery next Monday. I know I'll be home for a couple days after, but I hope to be able to go to work Thurs and Friday. Even if it's just half a day. Of course all dependent on how I feel when the time comes.

So glad to hear that the CS hasn't replaced the FB socially!  I sweat not excessively but easily, so I'm afraid of CS being a real issue for me :( I'm confident I'll prefer it over FB as long as it's below my chest and not through my palms, pits, neck area. And the pruney fingers... I read about the cause and it's actually not known why it happens in the first place. It's known to be a response from the SNS, so makes sense that it can be a side effect of ets

Share this post


Link to post
Share on other sites

On another note, I also want to vent about some push back I'm getting -

I had a routine appt with my psychologist last week. Ive been going to one for a yr basically to get Effexor type meds. It's helped but by no means has been even close to a cure. Anyway, I asked him what his thoughts on ETS were and he asked me what it was! When I sounded it out and explained it he looked horrified :unsure:. I expected him to be very against it, but I was really surprised that he didn't know anything about it. He said it was a barbaric procedure created to treat conditions that there is now medication for, like SSRIs. Of course he wants to cure every condition with a prescription pad. Can't say I disagree with where he's coming from, but he has no idea what FBers suffer through! I Imagine if he had it and turned red through med school and with patients and couldn't fix it with pills or CBT? What would be of his practice if he had tomato face all the time?!

I also have some family members practically staging interventions. I truly appreciate their concern. I agree that it's extreme and I'd have the same reaction if the roles were reversed. I'm terrified of the outcome and side effects, but I just think of all the things I'll hopefully soon be doing blush free!  Talk in meetings, presentations, wedding speeches, ask for a raise, Dinner parties, chat with a neighbor! 

Just last week I was in a rush to get dressed and go somewhere. My sister was in my room and exclaimed "Omg you're back is SO sunburned! When were you in the sun?" I thought "Huh??" When I looked in the mirror my chest and upper back were so red (yes I blush there too). Oh the mundane things people take for granted like rushing out the door without it looking like they have a first degree burn! In those types of moments I feel like I've really made the right choice.

Share this post


Link to post
Share on other sites

Sorry to but in here but for your psychologist to firstly say they have never heard of ets then to have their opinion based on very little fact and say it's barbaric is totally unacceptable. 

This is what makes me so angry, people don't understand what ets is yet have to say it's the worst thing ever! 

I don't believe there is any medication that can make you feel free unless they completely knock you out and make you feel like you're not apart of this earth. When I blushed there was nothing that would ever come close to stopping or helping it. I've read a few comments about medication working then in the next comment they cover their faces in make up and use calming techniques. 

If anyone is looking into medication, ets....whatever the procedure...do your complete research first, don't go off the first comment you read or the first professional you speak to. There is so much involved and what works for one person will not work for another but definitely get all the facts before taking action. 

Some people have been cut more than once with ets yet fail to mention this when describing their side effects, some people on medication say it works then in the next breath say actually no it doesn't work unless I cover up etc 

It's hard to trust the right answer that relates to your symptoms, follow people's posts to read up on their whole experience, how much they blushed before, how their sweating was before ets, how they felt on medication and what extra help they needed to feel even a little less red. 

But definitely do not take someone's response on board who barely knows facts x

Share this post


Link to post
Share on other sites

6 Months After ETS:

Severe Blushing: None.

Splotchy Red Patches on chest, neck, and one side of my jaw: Once monthly in very high stress situations. It's very gradual (takes 10-20 minutes to appear) and fades within minutes of the stressful situation ending.

Compensatory Sweating: Significantly less in the past few weeks, I think my body may be adjusting and finding it's equilibrium.

Gustatory Sweating: None.

Heart Rate: Averaging around 50bpm for a few weeks now. Again, I think my body's finding it's equilibrium. (I am hopeful!)

Pruned Fingertips: Seldom and subtle.

Some possible contributing factors to the CS and HR are that it's now winter, very cold and much less humid. And I'm not very fit these days (stopped running over a month ago).

Still waiting and watching but lately I feel thankful that I got ETS more than anything else. My social life and my career are notably more successful and much less stressful. 

Just wanted to give you all my half year update. I hope each and every one of you is doing well and that you have found or are on the journey towards finding your answer.

Life is good, may each and every one of you live yours to the fullest. 

 

Share this post


Link to post
Share on other sites

Thank you for your updates Fedup. They are very helpful and it's great to hear that your life is changing for the positive because of your surgery. I'm about to have mine done soon, although I don't have a date as yet it has been confirmed with my surgeon. Naturally I'm anxious and a bit apprehensive as well, but I know it's what I need to do. 

Stay well 

Share this post


Link to post
Share on other sites

Hi Fedup, 

I'm new to this site but have been struggling with facial blushing for the past 15 years and it's becoming unbearable to deal with it at work.  I'm a speech therapist and have to be around people/in meetings often.  I'm considering having ETS surgery done with dr. gorenstein and was wondering if your insurance covered the procedure.  I called their office today, and they said my insurance (united healthcare) was in network and so it would most likely be covered.   They said I would need to come in for a consultation and then they would get prior authorization.  I'm just worried about the expense if it's not covered... plus I'll be traveling from Oklahoma so the travel expenses will add up too.  

Thanks so much for continuing to post updates.  It's so helpful to hear back from people who have had the surgery and I'm hopeful that it will work for me too.  So happy that you are feeling more satisfied with the outcome, and I hope things continue to go well for you!  

Share this post


Link to post
Share on other sites

Hi Fedup, 

I'm new to this site but have been struggling with facial blushing for the past 15 years and it's becoming unbearable to deal with it at work.  I'm a speech therapist and have to be around people/in meetings often.  I'm considering having ETS surgery done with dr. gorenstein and was wondering if your insurance covered the procedure.  I called their office today, and they said my insurance (united healthcare) was in network and so it would most likely be covered.   They said I would need to come in for a consultation and then they would get prior authorization.  I'm just worried about the expense if it's not covered... plus I'll be traveling from Oklahoma so the travel expenses will add up too.  

Thanks so much for continuing to post updates.  It's so helpful to hear back from people who have had the surgery and I'm hopeful that it will work for me too.  So happy that you are feeling more satisfied with the outcome, and I hope things continue to go well for you!  

Hi asmith,

Work was where FB really effected me, socially it didn't happen nearly as often and I could hide it more easily. Meetings and presentations were the worst...no hiding there. I feel for you. 

Yes, my insurance covered it. I actually never heard from either Dr. G's office after my 2 week follow up, nor my insurance provider (ever) so I am assuming it was approved without question. I did the same thing, went for a consultation and then applied for prior authorization which my provider (BCBS) could not guarantee. They required me to get it done and THEN submit to be considered for coverage. I called so many times to try to get pre-authorized but apparently BCBS does not pre-authorize for ETS. There was nothing I could do but take the chance. 

So glad to hear my posts have helped you. I am very satisfied at this point. Ultimately, not blushing (severely) is so freeing and I'm loving the effect it has had on my life.

Good luck to you, happy to answer more questions for you if you want to private message me too.

Share this post


Link to post
Share on other sites

That's so great that your insurance covered it!  I scheduled my consult for Feb 7th so I'll see what Dr. G says and then check with my insurance from there.  It's just crazy to me that they can't say for sure if they will cover a specific procedure.

I can't imagine what it would be like to not blush, it's been such a big part of my life for so many years... Really happy to hear that are free from it!!  :)  Thanks again for all your help.

Share this post


Link to post
Share on other sites

Hi FedUp77, Can you tell me if when you blush your face is red or not? I had ETS 10 years ago and for ten years I didn't blush more. In the last few months it seems to me that the blush is come back but I don't know if is visibile or not.

Edited by Lunasol

Share this post


Link to post
Share on other sites

Hi FedUp77, Can you tell me if when you blush your face is red or not? I had ETS 10 years ago and for ten years I didn't blush more. In the last few mounths it seems to me that the blush is come back but I don't know if is visibile or not.

how you dont know ??
you just get the itchy feeling your face is in fire but you dont get red or what ?

 

Share this post


Link to post
Share on other sites

I read your post in the ETS forum and now i understand that you are seeing and feeling some blushing effects even though you are not particularly going full red in face.
I've read around forums that some people after 3or 5 years got the blushing back, partly not as before as i remember.
I've even read that some have done it twice.. 
in what country did you do your ETS ?

Thank you Karry for your replay. My question is: I had Ets so my blush should be not intensive.... or not??

Share this post


Link to post
Share on other sites

Good morning and merry Christmas to all. I had ETS in Italy. I'll follow my "blushing moments" with a mirror and I'll update you:)

Merry Christmas to you too :)
If i may ask, how much euros did the operation cost there?
best of luck and hope you dont blush anymore and keep us updated 

Share this post


Link to post
Share on other sites

Hi Terry, in Italy the operation is free. If you need other informations please ask me. I'd like ti know other experience likes me.

Hello Lunasol. How you felt in the first month's when you performed the ETS? You regret it?

Share this post


Link to post
Share on other sites

Well, I hate to have to post this, and ultimately admit this outside of my mind, but yesterday I got splotchy red on the entire right side of my face, neck and chest. 7 months out from surgery now. I have felt occasions in the past of the redness "building" again, always on the right side. The conditions were perfect: hot environment, I was on the spot for an extended period of time, and I had to lean forward and down to assess something at work. The patient was staring at half of my face. It was awful, all over again. I escaped to the bathroom and quickly treated with cold water and it cleared (much less maroon and much less long lasting than before ETS, but still very apparent). I fear it will continue to get worse. I am angry and frustrated at this point and I am so tempted to cry "no fair"! But there are so many others out there with worse challenges than this in there lives and I keep reminding myself of this.

I have no idea what I'll do about this, or if I'll just give in and be this way ultimately. I feel teased and slighted and just plain mad. 

Anyways, I'm going to try to keep myself positive here and not start perseverating. We shall see what the future brings. 

Happy 2017 all. Humph.

Share this post


Link to post
Share on other sites

Could this have been phantom blushing Fedup or did you manage to get a glimpse in the mirror to confirm it was a full on blush? X

Unfortunately not Befree. By the time I got to the bathroom from the incident (2 minutes?) I was very obviously splotchy red on my right cheek, jaw and neck. I wish I could blame it on phantom blushing. 

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...

×
×
  • Create New...