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mj

9 years post ETS

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Hi

 

I just thought there may be people out there interested in some longer- term side effects stories.

 

I had ETS performed when I was 24 years old..  am now 33 (female) 

 

 

I still have  DRY hands.  yep,pretty much dry all of the time and remain at a "normal" temperature most of the time too.

 

VERY fine layer of moisture appears on super humid days but thats about it.

 

I guess I am quite fortunate in that , whilst I do get CS , its only on very hot/humid days.  I sweat more on the backs of my legs and torso than I did before.  I am pretty ok with this, am able to hide it under clothes and I wouldnt say its severe.

 

Some strange side effects worth mentioning.  I get a very strange sensation at the change over of seasons.  I feel tingly, sort of hot and prickly in the face.  Not sure whether im cold or hot.  A little odd.

 

My feet still sweat like crazy BUT im pretty sure its about the same as pre op.

 

I do think I get some of the vague symptoms of feeling fatigues, a bit zombie like and disconnected at times.  Its hard to tell though whether this is from stress of daily life/tiredness etc. 

 

 

Over all I feel my quality of life post op is better than before.  I totally consider HH (mine was sever palmar/plantar since early childhood) to be a disability.  I would no longer classify myself as disabled.  I am able to carry out all daily activities easily (the feet make some things hard, but mostly am able to find suitable shoes/socks to deal with this. 

 

My heart goes out to those who find themselves disabled AFTER ETS.  It seems like such a gamble and I have to say that I am very upset that my GP didnt suggest I try alternatives first..didnt even get  a referral to a dermatologist! just straight to the cardio thorascic surgeon. I think this is SO wrong and can see why people want the surgery banned.

 

I have two small children and I live in fear that I have passed it on to them.  Even though I would consider my life post ETS to be better than before, it is too much of a risk and I wouldnt be encouraging my children or anyone really to have it done.

 

I just hope that in the not too distant future there is better and more effective treatment options for this horrible condition. 

 

Im happy to answer any questions people might have.

 

 

 

 

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Hi

 

I really have no idea. I was pretty clueless going in for the OP, I wasnt fully explained the risks, or the procedure itself.  I knew the nerve chain was being cut on both sides.  Had I known then what I do about the procedure, I probably wouldnt have gone through with it all !(even though my side effects are not severe)

 

It was so long ago though, perhaps he did mention what level but I cant remember,  I have in recent times thought about tracking him down and asking more details about the procedure.  Also due to the fact, that my side effects are minimal , would be nice to help others with some specifics.  I have heard though that its more about pot luck as to how your body responds to the cut rather than the specific T level? 

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Hey MJ realy interesting reading your post. I do believe it is complete pot luck whether u get bad side efffects or not. After doing extensive research i decided to have the op, my blushing became so bad it was going to turn me in to a recluse! :( I was so scared having the op as i had read all the bad stuff!! I like u MJ have been quite lucky in that i havent had any major side effects, sweaty feet and torso on very hot/humid days but otherwise i seem ok. A girl i spoke to who also had the procedure is really suffering from CS but she said she is still glad she had it to stop the FB. Its a very difficult decision as i suppose u just dont know how your body will respond. xx  

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Hi. Was just wondering at what point did you realize that it was time to have the procedure. Feel as if i am at the tipping point. I become a total recluse after work and lock myself away.

I have had a lot of tragedy in life and i always but my blushing and flushing down to that, shame and embarrassment i guess but i recently seen photos of myself when i was younger and it seems i was always like this. "pink face" was one recent comment flung at me and there the nice comments. Fear i have is if i have always had it, maybe its just part of me. Guess i'm gonna have the op and if all fails i have a box of pills with my name on it. Cards have got to turn good at some stage.

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I think the point where I knew I needed the op was when it started to bother my every day life. I started stopping in more, hated face to face interaction, even answering the door to the post man! 

 

If it is disturbing your every day life now then I'd suggest you seriously look into the surgery x

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