Monday, December 28, 2009

Welcome

Hello,

I am a New Zealander. I had ETS in 2001 for dripping, disabling palmar hyperhidrosis that had affected me since birth. Since then, I have had normally dry palms and I have never suffered any major or ongoing adverse side effects of ETS. I did experience some mild gustatory sweating for approximately two years after the surgery, but it faded away. I have never experienced CS (more below), anhidrosis, or any heart or lung function problems, or fatigue problems. All up, I am happy with the results of my surgery.

However, in recent years, I have learned that a significant number of ETS patients suffer adverse, chronic side effects after ETS that rob them of their health and quality of life – the results of their elective ETS surgery for Hyperhidrosis, Facial Blushing or Raynauds syndrome do not match what their surgeons promised. Many ETS patients deal with disabling side effects from this surgery – side effects that their surgeons never mentioned or downplayed the likelihood/severity of.

It is not for me to advise anyone on whether or not they should have ETS. However, I am disturbed that my own surgeon did not warn me of numerous potential adverse side effects associated with ETS that I now know have been extensively documented in the medical literature for decades. And the side effcts he did warn me about, such as CS and reduced exercise capacity, were described as being minor and having only a 1% risk of occurring - yet the medical literature states otherwise.

In addition, from 2009 to the present, I have both corresponded and met with a significant number of ETS patients from the US, Canada, the UK, Australia, New Zealand, and Peru, aged from their early 20s to mid-40s, who report having experienced some or even all of the following side effects and health problems after ETS.

-Uncontrollable sweating on the body from the chest down to the legs that, for hyperhidrosis patients, can be far more distressing than the original, localised excessive sweating condition.
Doctors call this side effect 'compensatory sweating' (also known as CS) or 'compensatory hyperhidrosis', and it can be so severe that the ETS patient soaks through their clothing daily, requiring several changes of clothes and resulting in social and professional stress and disability.

-Inability to sweat on the face/head (anhidrosis)

-Painfully dry eyes/scalp

-Hair loss/thinning and/or loss of eyebrows

-Lowered resting and maximal heart rate and reduced exercise capacity

-Bradycardia (very low heart rate, may require a pacemaker)

-Breathlessness, even when doing low-intensity activities such as walking, child-minding or hoursehold chores.

-Ongoing fatigue

-Cold hands (can be painfully cold)

-Sweating on the face and head only when eating or eating certain foods. The sweating can be mild or severe, for example, ranging from a dampness to sweat that is continuously dripping off your head/face.
In severe cases, it can greatly limit the sufferer's desire to dine out, eat meals with family, friends, and colleagues, attend Christmas dinners, attend business lunches, etc. Doctors call this side effect 'gustatory sweating'.

-Impaired thermoregulation – the body can no longer adjust to changes in temperature, especially hot weather (loss of homeostasis). This can severely limit the sufferer's ability to go outside in summer/warm weather, play sports, and enjoy many outdoor social activities and pursuits, resulting in greatly reduced quality of life and family life.

-Extremely dry hands

-Erectile Dysfunction

-Difficulty reaching orgasm

-Loss of libido

-Blood pressure problems

-Stress intolerance

-Depression

-Mental fogginess

-Loss of emotion

-Sensitivity to sounds and light

-Ongoing pain, particularly in the chest, back, limbs, or under the arms. Pain can be severe/disabling.

-Unexplained prickling, burning, numbness or tingling sensations in the body/limbs

Brief descriptions of medical conditions ETS surgery is commonly offered for:


Hyperhidrosis
– Excessive sweating of the hands, feet, underarms, face, head or body. The sweating can be so severe that sweat forms on and/or drips from the affected body part(s) almost continuously during waking hours. Hyperhidrosis is considered to be socially and professionally disabling by those affected.


Facial Blushing
– This condition is also known as 'erythrophobia', or 'fear of blushing'. It is a sudden and severe blushing of the face (the neck and upper chest can also be affected), sometimes to the point that it is burning and painful. Facial blushers typically find it impossible to look others in the eye without blushing deeply. Those affected consider the condition to be socially and professionally disabling.


Raynauds
– Discoloured, painful and excessively cold hands/feet/limbs. Raynauds is a vasospastic disorder, the cause of the phenomenon is believed to be the result of vasospasms that decrease blood supply to the respective regions. Sufferers can develop the first signs of frostbite in the affected body part(s).

14 comments:

  1. Kia Ora Francesca

    I've been reading your comments for quite a while now and usually I'm on the kudo web site checking out for any new post almost daily for around the past 6 yrs but I have never posted..
    I Had the operation done in 99 in Auckland, I agreed to the opeation cause of my facial flushing, OMG the biggest of my life, like just about everyone else I suffer from a lot of side effects, worst ones are dry eyes, dry skin, stress problems which i never had before the op..the list could go on and on..ha
    I'm glad to hear you do not suffer from any side effects which is really lucky...Maybe Caters diet thing might be worth a try as I'm not holding my breath that stem cells will be around for a long time yet if ever..?
    Was it Auckland hospital where you had your operation ??
    I've tead a lot of posts how their surgeon did the operation only to line their pockets, I genuinely think that my surgeon did it cause he honestly thought that he was going help me..well maybe he thought that who knows, maybe he wanted a lab rat ?
    And like everyone else no side effects where made aware prior to the op, even after the op he suggested that these side effects where not related in any way..
    If I had done some research I defintely wouldn't of agreed to the op..
    Any way just a quick email to say hello, keep up with the posts and yes I believe there are plenty of people around NZ who have had this operation...
    enjoy the summer ...Cheers James

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  2. Hi Francesca

    This is my story.

    In 1999 I had the operation by a surgeon called Dr Murray McCormick who is a vascular surgeon, he came
    highly recommended by my local GP and he works at both Auckland hospital and has a private practice in Epsom.
    I had a quick 20min consultation with him at Auckland Hospital, I must admit I went full steam into the operation thinking that this
    Would cure my facial blushing which I’ve had since a child, looking back now it was probably wasn’t that bad, people would say that
    It wasn’t but to me through my own eyes I saw things differently.
    After the op I spent the next 5 days in hospital recoving from a collapsed lung with this tube poking into my chest to drain some
    fluid out, even then my skin felt different, then I got blisters all over my face I think due to the dryness, the surgeon said it was
    Some type of prickly heat which he had never seen before.
    My upper body was so dry but I could still sweat a little bit on both arms and a my right forehead,& this was the case till about 3 months ago
    10 years after the op, the place in my chest where I was cut was twitching and getting painful, It started getting pain down both arm with these funny twitches
    This would come randomly and this went on for the next couple of months.
    And then over the Xmas period I stopped sweating completely on both arms and my forehead and I would get pin & needles on both arms 24/7
    I’ve read a lot of posts from people how things improve over time, with me I seem to have gotten worse over time, so no matter how much I run I can’t sweat anywhere on my upper body and even though I could only sweat a little bit before on my right forehead and the back of my neck, I felt somewhat normal.
    I suffer from cs like everyone else but I guess living in NZ the weather doesn’t get too hot, well only for about 3 months of the year.
    I also suffer from a really dry eyes / dry mouth I’ve tried evening primrose oil / fish oil for a long time but it doesn’t help at all..
    I feel really lost what to do next, like many I feel really depressed and suicidal, I have a kind understanding family but I feels that I off load a
    bit too much on them…lol.
    I’m going to test caters diet theory from today onward and see if that makes any kind of difference, I figure no harm in trying.

    I think I’ve all of your posts under chickpea and I must say you come across as a very positive person which is good.
    I would love to hear how this other kiwi is getting on with Caters diet.

    Take care
    James

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  3. hey james

    I live in Auckland and our story is exactly the same except I am a woman & I had mine done in the UK in 2000.
    Dont worry you are not alone in feeling at the end of your tether. I feel like that daily despite being a warm bubbly person on the outside!!bad ets robs a person in an unimaginable way.If you have made it ten years you are a very strong positive person although it may not feel like it. I am one of the 4 who met up with Cesca and two others prior to xmas and it is a boost to talk to others who know exactly what you are going through.

    I would love to meet up for a chat. Cesca has my email and mobile number.

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  4. Hello James -

    Am re-writing this as first post got lost somewhere is cyber space, it was just a quick introduction to say hello and breif "this is my story"!

    I had the same surgery, and Doctor as yourself approx 5 years ago for the same problem - I will forever curse the day that I meet Dr McCormack but agree that at best his intensions I beilive are to help, I just don't think that he or the other doctors performing this surgery have any real idea of the complete soul distroying nature of it, or the true degree of the side effects. I also have strong feelings that this is not an acceptable treatment for facial flushing/blushing at that there are other options available that should all be explored prior to this quite invasive procedure.

    I don't have alot of time to write now but I am planning on posting my story shortly but just want to say that I have been to some very very low places in the past few years and have (with help) managed to get some sort of normality back into my life.

    I have for the past 3 - 4 weeks been following Carters Diet with what I have to say are outstanding results, my energy levels are through the roof, I have little to no fatigue, my mind is clear and content, the CS has improved hugly and my general state of mind and outlook towards the future feels a whole lot brighter - I can not recommend this enough to not only you but to everyone suffering.

    Anyway feel free to contact me anytime - the lovely Francesca has my contact details.

    Waremst regards to all...

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  5. Hi


    Sorry I didn't catch your name.
    I'm somewhat surprised that Dr McCormick performed another ets with the about of sh*t that I gave him after I started to get all these side effects
    I use to ring him and abuse him big time...If only for some small satisfaction that this would upset his day.lol
    I would love to hear what you eat now on this carters diet and I'm glad you’ve had great results to date, this give me somewhat hope that things can get a little better for me..
    Apart from eating a healthily diet, can you recommend anything else that has made any other small difference to your quality of life. ?


    Take care
    James

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  6. Hi James -

    Sorry forgot to put my name, it is Jonathan.

    Well that does piss me off a little, no mention to me of someone that had this surgery and was that unhappy with - probably boardering on unethical, but then again any doctor that makes a very handson living off performing surgeries in my opinion has questionable ethics. I suspect that out of the number that are performed alot of people never complain there for if one does it is seen as a one off - if these doctors were doing there job properly they should have constant contact with patents after the surgery to monitor things, this way they would have a better understanding of what happens to people in the weeks, months, years after the surgery - only then could they give potentual "clients" acurate information! anyway, don't get me started.

    As for what I have done, after getting into a dark place for a couple of years and feeling quite trapped and isolated (I did not tell my family, freinds etc about the horible side effects) my mood got to a point were I did not want to see or talk to anyone and just put on a good act if I had to. I tried a number of things and realised that I was suffering from depression but determined not to just go on antidressents I went to spiritual retreats, read one self help book after another but all the time did not even accept in myself what the issue was, that being the surgery and what was happening to me, long story short I started seeing a shrik, a couple of months of beating around the bush about why I was deressed, in an emotional outburst I fronted up to what the real issue was and from there have gradually improved, mentally that is as the side effect still plagued.

    I had put on a bit of weight so decided to start lossing some and noticed that the improvment in the CS was quite noticable, I can only put it down to the fact the body can cool quicker with out excess fat on it, have since started Carters Diet and this has seen the biggest improvement - I eat everything that I did before but just make sure that nothing is pre-packaged and cut out all the sweets, and any foods that have preservitives in them, I have also taken to eating alot of nuts (not roasted or salted) seeds, pulses etc all things that help with the seretonin production in the body. I have quite large organic gardens so eat lots of fresh fruits and vegetables and have found that white meat, chicken and mainly fish agree with me more than red meats although I still eat red meat a couple of times a week because I love it! And for drinks have been trying organic wines with less sulphits in them and no added preservitives, and only drink fresh juices nothing from a bottle pre maid, and lots of water.

    The CS side effects have not disappeared completly, as I found today where it has been very humid and a temp around 28 - 30 deg, but it is I would say 80% better than this time last year when I would have been literally dripping, I now have a slight damp patch in the middle of my back, but still have energy, normally I would be completely fatigued in this heat and unable to do anything, and to tell you the truth - this I can live with, what it was before challenged me physically and mentally on a daily basis, this is a much nicer place to be.

    If you want to chat to me some time please feel free to contact me through Francesca.

    All the best, and please give this diet a try - if you are suffering it will make a world of difference and it is amazing how everything else seems so much better in your life. I walk around with a smile daily at the moment, I have some sence of normality back - and that is a gift.

    Regards Jonathan

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  7. Hi Jonathan

    Thank you for sharing your story & it sounds like a mirror image to mind.
    I think I’m at that dark place where you were once and it doesn’t feel very comfortable..
    I know I’m depressed and like yourself I don’t want to go on any antidepressants, I’ve tried them in the past
    and they all haven’t agreed with me…more side effects no thanks…
    I’m now 10 years post ets and thing pretty much stayed the same way for 8 years, I had
    the CS but I learn to live with it, obviously summer is more difficult but you know how to avoid certain
    situation and not to wear grey shirts ever….
    The past couple of year have become particular hard for me, with a whole lot of new unwanted side effects
    I think I have mention some of these before like the dry eyes, but my skin has taken a turn for the worst
    And my arms are completely dry, I use to be able to sweat on my arms up until a couple of months ago but
    now they are completely severely dry..I remember about 3-4 months ago my nerve where I was cut was
    twitching big time and that usually means some bad is about to happen. It’s strange how my arms manage to survivor
    for years before the nerve finally died…my arms now are burning 24 / 7, taking pandadol only helps a little…
    So after reading your story and reading carters diet advise I have decided to go on the band wagon as well, what
    do I have to lose right..?..
    I know it’s going to be very hard act to follow, as I have never really stuck to a diet as my weight has never been an issue.
    I can pretty much eat whatever, cakes pie etc and just ran it off, I play a lot of soccer so that kind of keeps be fit, although it feels uncomfortable
    not being able to cool off like most normal people.
    Can I ask you Jonathan what products do you use on your skin as my skin is very sensitive and even before the operation
    It was that way as well, now post op its 100% worst…any other tips would be very grateful.
    Have you tried any stem cells pills ?
    I’m thinking of giving evening primrose oil a go, have you tried this at all?

    Cheers
    James

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  8. Hi James,

    Good to hear from you.

    Sorry to butt in....I just want to recommend some products that may help with the dry skin.

    Check this out:

    http://www.purefiji.com/nz/

    They make moisturisers, body wash etc. and source all their ingredients from wild-harvested nuts, coconuts etc. in Fiji. Their products are 100% natural and fair trade.

    They take the virgin (first) press of the coconut oil so it is full of good nutrients for your skin.

    Their products are VERY gentle and soothing. They cost a bit more than what you would buy in the supermarket or pharmacy, but that is because they are of a far better quality and fair trade.

    In addition, a little bit of their body oil goes a long way becuase it is so rich and nourishing, so if you buy a big sized moisturiser, it will last many months.

    They also do 'travel size' products....maybe you could try these first and see if they work for you?

    Hugs,
    Francesca

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  9. Hi Francesca

    Your comments are always well received & appreciated.

    Thanks for posting the link, my sister actually put me onto some coconut oil a while back, but I tend to feel that it's a bit to greasy for my skin & I ended up with this rash...But I do believe that applying a natural moisturiser is the way to go, I just need to find one the works for me...
    By the way I'm 1 & half weeks into Carters diet, with the odd moment of weakness (peanut m&m's)but apart from that I've maintain healthy eating..Oh well there's a long way to go..but I will endeavour to keep it going as long as possible.

    Kind Regards
    James

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  10. Hi James

    on my face i use pure rosehip oil and then on top i put trilogy ultra hydrating cream. everyone tells me what lovely skin i have maybe it would work for you but i realise everyone has different levels of dry skin after ets!!! i tried virgin cold pressed coconut oil but it did not work on my face. on my body i just use regular moisturiser but if not enough you could try the face concoction on your body?

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  11. Hi

    Thanks for the tip for rosehip oil, so far so good, to be honest I'm not much of a fan with the trilogy ultra hydrating cream, the lavender doesn't really agree with me..
    In the past of used the brand simple, which you can buy from most supermarkets, it works ok.
    I've notice as the years go by my skin gets drier and drier so I have to keep trying new things for my face...

    Cheers
    James

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  12. Hello everyone, sorry it has been a while since I checked the forum, busy time for me at the moment. James, I have yet to suffer from any major dryness of the skin, from time to time I get dry eyes but nothing that bothers me to much and as for the skin it was my hands that went a little crazy after about 6 months, so dry the skin pealed off but it sorted itself out and I have not had an issue since, have some Clarins face mosturiser that was a gift I use from time to time but have never really had the need, can be worst in cold weather - I am sure this is somehting that I have to look forward to! Sorry can not assist on this one.

    Hows the diet going? have you noticed any changes?

    Cheers - Jonathan

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  13. Hi Jonathan

    I have some good days and bad days with my diet, today was a bad day as I had KFC for lunch.. it tasted yummy at the time though, So I haven't seen any changes thus far but it is still early days into my cleansing diet.
    Yeah my skin was really dry for about 9 years, when I mean dry I could put moisturiser on my face and it was manageable, I don’t know what happened but it seems a lot drier now, I’m not trying to scare you all or anything but it’s something that will probably happen to most ets suffers down the line, but it’s quite weird how I still keep getting these new side effects even 9 yrs post ETS….Stupid operation !
    I’m just wandering how have you been coping with the humidity lately and do you think Carters diet has helped you get through the summer ??
    You mention dry eyes, this is probably by far my worst side effect and there’s absolutely nothing that can be done, using eyes drops I find makes things worst.
    I’ve read a lot of material about fish oil might help, but I honestly don’t think this makes one slightest of difference..

    Please let me know if you are still on the diet and what changes you have seen.

    Cheers
    James

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  14. Hi James

    It might be hard but you need to really try to understand this diet and how it will benifit your body and well being - this time last year with the high temps and humidity I was at some points changing my undershirt 3 - 4 times a day and spent most of my waking hours awkwardly pulling my short away from my body and feeling like the life was being sucked out of me - this year.... I am not even wearing an undershirt!

    It is such a simple pleasure, but to be able to wear a light linen shirt with out an undershirt on a hot day and not worry about it, the warm breeze blowing through it to your body? I never appreciated how wonderful this feeling is until now!

    I can honestly say that it has been life changing, yes I still sweat and as I was not a sweater before the operation it is still frustrating and uncomfortable but this is when it is 28deg and 98% humidity and no more than what I guess a normal functioning body might sweat on a hot day, what is remarkable though is the recovery time is so much quicker. I use to start sweating and that would be it for hours now I can get a flash of heat and sweat a little and then it is gone.

    I understand that everyones situation is different, and the ability to remove all presevitives and additives from a diet is bloody hard as I am finding out, however the benifits to not only the body but also the mind and overall wellbeing far outway the burden. I was out in the city today and was really hungry, do you know how hard it is to find something to eat! literelly everything is pre-made and full of presevitives, artificial colourings, salt, sugar, stimulants, flavouring etc, all things I am avoiding, it took me a while and I ended up having to go to a restaurant and ordering a fresh tuna salad (hold the dressing), and all I really wanted was a quick snack, I would generally have picked up some sushi or a pre made roll or a burger or somthing.

    It is not easy by any means and if you need some ideas or support just ask I am more than happy to help you come up with some simple menus etc - this is a good time of the year to do it as well, as if you can notice changes it will be easier to stick to it!

    Regards - Jonathan

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