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Cesca

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Cesca last won the day on May 4 2016

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  1. Cesca

    ETS//...WHAT DO I DO???

    Hi Kino, May I ask, does the sweat on your hands disable you? -Does it drip for hours and hours everyday and make using a computer, driving, cooking, writing, reading, etc. very, very difficult or impossible/dangerous? -Do you have to carry a sweat rag everywhere with you (e.g. a scarf around your neck, or sweater tied around your waist) so that you always have something to wipe your hands on? -Do you rarely wear the same clothes two days in a row, because of having to wipe your dripping hands on your clothes all the time? -Do shop assistants, bus drivers etc., often comment that the money you have passed them is wet? -Are there certain activities you would never even consider trying because of your hand sweat? (E.g., Sports that involve gripping bats, for example.) -If you held your sweaty hands above, say, a glass table top for 2 minutes without wiping them, would a very noticeable, sizable puddle form? What I describe above is what I consider to be the most severe form of palmar HH. From what you wrote, it sounds like you perhaps have moderate, rather than severe, HH. Of course, how people perceive sweating is subjective, so if you sweat more than others, it probably does seem severe to you. However, IMO, if your hand sweating is not stopping you from doing everyday activities, or not making it extremely difficult or dangerous for you to do numerous everyday activties, I would say quite firmly that it is not a severe case, and that ETS is therefore not something to pursue. The risks aren't worth it. How long did you try Iontophoresis for? People who try it for several weeks, regularly, seem to report very good results. Also, how about trying medication? Some people do get good results from ETS but, as you seem to be aware, some people are left devastated by the side effects. There is no way of knowing what the outcome of this surgery will be if you decide to have it. Bear in mind that if you decide to have ETS and you end up with side effects such as severe CS, inability to sweat on your upper chest, face and head, fatigue, chronically dry eyes, heart problems, etc., you will likely feel that you have traded your original problem for numerous, much worse problems. Please also bear in mind that, at the age of 20, you likely care a lot more about what othrs think of you and this probably makes you much more self conscious about your hands. This will very likely change as you get older and more confident, especially if the sweating is not actually disabling you on a daily basis.
  2. A group of four ETS patients got together in New Zealand on December 23 to talk...and talk...and talk. We all found each other via the internet. We feel there could be many New Zealanders living with the side effects of ETS because there are several surgeons in NZ who routinely perform ETS, and have been doing so for years. We agreed to set up a support group for New Zealanders living with ETS side effects and I have just set up a blog for the Kiwi ETS group, which you can find at: http://kiwietsgroup.blogspot.com/ My contact details are on the blog and I can put you in touch with other Kiwis who are living with ETS side effects. If you are a New Zealander living with ETS side effects, you are not alone. Cheers, Francesca
  3. A group of four ETS patients got together in New Zealand on December 23 to talk...and talk...and talk. We all found each other via the internet. We feel there could be many New Zealanders living with the side effects of ETS because there are several surgeons in NZ who routinely perform ETS, and have been doing so for years. We agreed to set up a support group for New Zealanders living with ETS side effects and I have just set up a blog for the Kiwi ETS group, which you can find at: http://kiwietsgroup.blogspot.com/ My contact details are on the blog and I can put you in touch with other Kiwis who are living with ETS side effects. If you are a New Zealander living with ETS side effects, you are not alone. Cheers, Francesca
  4. PS - Since you are about to see a neurologist, just thought I should mention that a friend who is living with ETS side effects recently saw a neurologist and asked him if the Sympathetic Nervous System played a role in the following: -heart function -thermoregulation -lung function -blood vessel function -brain function -moods -energy levels -hair growth -skin function -sexual function The neurologist answered "Yes".
  5. Zane, I am sorry to hear you are dealing with this. It is very brave of you to talk about these things. I have had ETS and while I do not have the problems you mention (I am a woman), I know of several men experiencing ED after ETS. I could put you in touch with one of them, if you like. I have read the testimonies of many people who say they lost the ability to experience emotion after ETS. Breathlessness is a known side effects of ETS, again I have read the testimonies of many ETS patients who now deal with this problem (I think the reduced lung capacity *might* be caused by parasympathetic dominance causing a constriction of the muscles around the lungs but I am not 100% sure on this.) I do not know if you have seen this forum, but it is a place where you can find many others now dealing with ETS side effects - includng the ones you mention. http://etsandreversals.yuku.com/directory This forum was set up specifically for people in your situation, and to create a record of testimonies and information about the 'other side' of ETS, for people considering ETS to read and consider. Try asking your questions there, you may get more replies than you will here. Best wishes, and feel free to PM me if you want to chat or would like the contact details of a guy dealing with some of the same ETS side effects you are experiencing. Francesca
  6. Thanks for the tip about the summer soles, I might look into that. It would be nice to be able to wear pretty sandles without slipping fear, and without leaving puddles
  7. Cesca

    my red pic

    Brave of you to post your photo. Good for you! I am sure many appreciate it. I do not have FB but to be honest, I think your rosy cheeks look happy and friendly. However, I also understand that blushing can be stressful for the person affected. Take care of you.
  8. Just wanted to add that anyone considering ETS should be very, very wary of any doctor or happy ETS patient who tells you that a successful outcome from ETS depends on which level the surgeon cuts or clamps (T2 only, T2 and T3, T4 only, etc.....). This is a common way for surgeons to encourage patients to have ETS surgery and 'reassure' potential patients that ETS is safe - the surgeon will insist his technique and method are superior. I was cut at T2 8.5 years ago and I am fine - no CS, I can still sweat on my head, no heart problems. Overall, my health is good. However...I have spoken to others who have been cut at T2 and had a very different result. One person cut at T2 now has bradycardia, severe CS (soaks through their clothes), an inflamed nervous system, chronic fatigue, ongoing pain, dizziness....and other health problems. This person is young and was perfectly healthy before they had ETS. Now they are on disability. I don't think the surgeons fully understand what they are doing with this surgery and I think each individual gets a different result from ETS. Some get lucky...others are left devastated. ******************************************************** On a different topic, really, we blushers and sweaters should DEMAND that the medical community actually research our conditions (because they haven't) and look for better solutions. No one really knows what causes HH and FB....there is no proof that either are caused by overactive sympathetic nerves. Hence, it's pretty bizarre that they cut people open to 'cure' it..... Society makes us feel bad/inadequte/ashamed because we sweat and blush but to a certain extent we blushers and sweaters also do this to ourselves. This is just ridiculous! People are generally sympathetic and understanding about diabetes, depression, cancer, blindness, food allergies, heart conditions, deformities, skin problems....imagine if we all found the courage to speak up about our conditions. Imagine how much easier life would become for blushers and sweaters if we too came to see ourselves, and to be seen by others, as just ordinary people with a rare but widely known medical condition. Sure, sweating and blushing can be embarrassing...but funny how once you start talking about, openly and honestly, the embarrassment dissipates pretty darn quickly. I still have severe HH of the feet and my pits can still drip too. I find every 'normal' person I talk to about it these days is nothing but curious and caring, and happy to learn about it.
  9. Hi there, I am from New Zealand and I had ETS in 2001 for severe palmar HH. I would like to get in touch with other New Zealanders who have had ETS or who are thinking about having ETS. Please PM me or reply via the board. I look forward to hearing from you Cesca
  10. PS - I will also be more than happy to hear from anyone who is unhappy with the result of their ETS. I do not doubt in any way that ETS has caused great suffering for some. My main reason for asking if there are people on this board who have NOT got side effects from ETS is that, as far as I can determine, it seems rare for people to have this surgery and not get side effects. I am curious to know if there ARE people out there, several years post-ETS, whose health has not been affected by the surgery.
  11. Hi there, I live in New Zealand and I had ETS in 2001 for severe palmar HH. The surgery left me with normally dry hands and I have never had CS or any heart or lung problems since the surgery. I can still sweat on my face and head. I have not gained weight or observed a change in my metabolism. My energy and motivation levels are fine and I have not experienced any emotional changes since the surgery. My thermoregulation seems fine. I did get mild GS (gustatory sweating) after my ETS but it faded after about 18 months. I never attempted to treat it, I just lived with it. It wasn't very bad - beads of sweat on my nose and a slightly damp hairline/back of my neck when I ate. I sweated much more around my hairline and from my nose and cheeks when I ate spicy foods but it was still ok - not dripping or anything. As I said, the GS faded and these days my face sweats normally - only in very hot weather or if I eat really spicy food. In recent months I have come to learn about the other side of ETS. I have corresponded with and read about hundreds of people who have ended up with severe side effects from ETS, side effects which have altered and restricted their lives terribly. This has disturbed me greatly because none of them were ever warned of ALL the potential side effects from ETS - and nor was I. Furthermore, most of these people were in very good health before they had ETS and now they suffer daily. On reading online testimonials, I see that even those who are very happy with the results of their ETS nearly always say that they now live with some side effects - usually moderate CS and a reduced heart rate, and inability to sweat on their face/head (anhidrosis). Is there anyone on this board who has had a successful ETS who did NOT get any side effects? Specifically, I am seeking people who are at least 24 months or more post-ETS, because the side effects can take a while to manifest. I would also really like to hear from any New Zealanders or Australians who have had ETS or who may be considering having ETS. Thanks for your time, please PM me or reply via the board.
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