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mj

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  1. mj

    9 years post ETS

    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?
  2. mj

    9 years post ETS

    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.
  3. Thanks Steve, I looked at it..but am too scared to make my own! even tho it does look easy i guess. thats awesome it works for you! how often do u have to do the treatments? and does it hurt?
  4. Hi all I have posted on here a few times but not for ages! I am a HH sufferer (Hands and Feet) and I had ETS performed about 5 years ago. The surgery did completely cure my hands..they are fine now., but my feet sweat like all hell and the thought of going through another summer with them like that is driving me crazy!! Im against using any type of drug and im thinking that iontophoresis might be worth a shot. However they are quite expensive and im not even sure if it will work for me. Just wanted to find out people's experience with the ion machines for Planter HH, how they got one, if they work and are worth the money? Also.. i have a little baby girl (9 months old) and i am becoming quite obsessed with whether she has this horrible condition, its just heartbreaking thinking that she might have to go through what i did with HH. Just wanted to know if any of you have kids and have this same fear and whether they did inherit it? thanks !
  5. mj

    5 years post op

    Hi, I am so sorry to hear about your miscarriage. I hope all goes well the next time. I only recently got back on this site after having become quite obsessed with it just before my surgery!! As i said i havnt had any major problems over the past few years but recently the pregnancy thing has been worrying me. I am trying to track down my ETS surgeon to get some particulars of my surgery. I had even forgotten his name!! feels like 20 years ago i had it done. Its good your FB has gone. I was so obsessed with my sweaty hands when i had them but i think with blushing its worse in a way coz theres no way u can hide it. if you dont mind, id really like to hear what you ob has to say after shes seen your surgery record and if she/he believes it could have affected your pregnancy. Thanks so much
  6. mj

    5 years post op

    Hi, just thought id share my experience and Id really love to know if any other people have any of the same side effects. I am 27 now, I had T2 cut back in 2003 for severe HH of the hands and feet only. I had no blushing or abnormal sweating anywhere else. I really felt that HH especially on my hands was ruining me. I felt I had no chance of doing any of the things that I wanted to do with my life with hands like that, you know how it goes, it totally consumed me. I was worried about ETS but my brother, who also suffered from HH went through with it and seeing him with dry and warm hands for the first time ever! changed my mind. Since the surgery, I have to say Im pleased with the overall results. I do certainly get some CS, on my lower back and back of the legs mainly but only when it is very hot and humid! doesnt really worry me. feet sweat the same as pre op. I sweat lightly on my hands when its hot and they get a bit cold and clammy when im really nervous. the occassional night sweat (mainly my legs). i go hiking a lot and notice that i do sweat on my face and head when im really working hard. Now heres a few strange ones: when i eat really sugary foods, like doughnuts, or i eat chilli, i get this brief tingly prickly feeling on my face no sweat, no redness. its not noticeable to others and doesnt stop me from eating these things tho:) On really cold days sometimes my little finger and ring finger go completely numb and white, i have to put them right in front of the heater or sit on them for ages till there normal again. my feet and hands and nose get soooo cold in winter, im worried its some kind of circulation problem, maybe related to ETS?? anone else get things like this? one last question, my husband and I are thinking of having a baby sometime in the near future and im wondering if there is anyone who has been pregnant post ETS and if anything strange/differant happened when pregnant and after. Thankyou!!
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