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Truly excessive sweating after ETS

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dem	Truly excessive sweating after ETS		Lead	[-]
Member Posts: 2 08/22/09 07:14 AM	Tags : ets, -effects This is my first contribution, don't consider ETS - ever - unless your surgeon uses clips and he agrees that he/she can reverse in first 12 months. My neurosurgeon actually cut a small segment of the sympathetic nerve away which means my only chance of reversal will be an overseas visit to Finland (I am UK based). I didn't suffer from either sweating or blushing prior to op but had a problem of freezing and swollen hands - mainly during the night-time, and after tests to preclude other disease processes the neuro-people thought that ETS would solve the problem. I believed them!! Just an hour before surgery the surgeon spoke to me about the side effect of compensatory sweating that might happen but would resolve hopefully. I agreed to go ahead. Apart from the fact that the surgery should have taken only 90-120 minutes in total, mine lasted from 8AM until I arrived in recovery at 1.30PM - the surgeon couldn't locate either branch and sought help! After assistance the aneasthetist and surgeon had problems re inflating my left lung - which eventually they did but I ended up with a chest drain and was in hospital for 10 days - one other side effect was pleural adhesion on the left side which I still have pain from. Now, after 3 years I need to change underwear 3 or 4 times a day along with several changes of pants and shirts. My back and buttocks are likened to Niagara Falls - this is not an exaggeration. I know this may be alarming to those considering ETS but please be wary and ask lots of questions - especially about technique and the possibility of reversal if excessive sweating is an issue post-surgery. Some other side effects that I have is a lower heart rate, sleep problems - to do with diurnal patterns, feeling anti-social in meeting up with folks because I have to carry spare clothing etc., excessive mucus formation and other less challenging effects. SO BE VERY CAREFULL about ETS - ASK QUESTIONS and seek opinions from other patients who have had ETS. Surgery in Finland is my hope but it's expensive and they might not be successful first time. Dem from a very wet UK!
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Dripping Silver		#1	[url]	[-]
Member Posts: 4662 08/22/09 10:29 AM Administrator	Welcome dem, Oh my goodness, you really had a terrible experience that is normally advertised as a "minimally invasive" procedure. And on top of that, you now have many side effects. If you didn't experience sweating prior to ETS, you must feel shocked by dealing with CS. If you spend some time reading here at the forum, you will soon learn that the clamping method cannot be reversed within twelve months as you stated. Many of our members have had the clamps removed well before twelve months and the find little to hardly any relief. I'm not sure when you mention Finland whether or not you are talking about Teleranta's reversal. His fees years ago ran to $20,000.00 and again most people did not benefit significantly after his reversal. I don't quite know what you mean when you say "they might not be successful first time." I am curious where you heard that. I hope you are feeling better now. Carole
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ugyan		#2	[url]	[-]
Member Posts: 616 08/22/09 02:36 PM	Dem, I am curious to know if your original condition was successfully treated by the ETS surgery? It is rare - I think - to see it performed for your condition. Was it Raynaud's? What was the diagnosis? Did the effect last? Many people who have ETS for sweaty hands also have cold hands, and it becomes dry (very dry in some cases) and warm (at times feeling like the hands are going to explode). But often this effect is reversed and the hands become colder, due to denervation supersensitivity. If you read through the posts, you will find that many complain of this side-effect. What I have seen - long term follow ups - only a minor percentage of patients had a continued improvement for Raynaud's. I wonder if you told your (obviously not too experienced....) surgeon about your problems??? Did you let him know, also in WRITING what you are suffering from as a result of the 'safe' surgery? Did you make a complaint at the hospital, so that others than your doctor might be aware of this? One of the reasons doctors can allow themselves to be so delusional about their 'miraculous' work with ETS is because patients are too intimidated (or what) to give proper feedback. If the doctor follows up the patient, they only ask the questions they want to hear the answer to! It is mostly just ego-stroking exercise. Patients who had bad outcomes have to make sure that it is known by the doctor. There is no point in sitting at home or occassionally coming to the forum and telling it all as it is here, without telling it to the surgeon in the first place. They can become irrational about their own sense of importance, the surgery and the 'miraculous' effect it has on patietns, if there is no true feedback. We have to make sure that the true impact of ETS is known and recognized by the surgeons and the wider medical community, so I would encourage anyone to make a complaint at teh hospital, and the monitoring bodies. The more they have of these letters, the more attenttion they have to pay. If you ask anyone who performs ETS they will tell you that ESB is not reversible. You will get the same response - probably for another reason - from those who have nothing to do with ETS or ESB. Only those who offer ESB will tell you that clamping is reversible. What does it tell you? You can make a complaint even though you had the surgery 3 years ago. Have thought about taking legal action? Mia
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dem		#3	[url]	[-]
Member Posts: 2 09/03/09 07:54 AM	Hi Carole and Mia I'm not good at this typing stuff and thought I had posted a reply but I cannot see it. No, I didn't have Raynauds but what is now diagnosed as nerve root irritation when lying supine. The hospital and surgeon no longer offering ETS because of peer group discussions - several countries as well as some in the EU have banned it due to not just comp sweats but other unrecognized (by the neuro's et al) symptoms. I sought legal advice and because I ackowledged that the surgeon had informed me about the possibility of comp sweats the advice was no go. None of my other symptoms are accepted, even by my own local doctor, by the medics... so ... The nuero-surgeon agreed that he had not seen such severe comp sweats but could do little except see a medical doctor who might prescribe drugs such as Ditropan, Robinul or Probanthene. Has anyone heard of these? Its even colder and wetter than last post - I live in the English Lake district high up and I think I need a new warmer country where the weather is dependable. Any suggestions. Dem
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4everhopeful		#4	[url]	[-]
Member Posts: 24 09/04/09 02:17 PM	dem wrote: Hi Carole and Mia I'm not good at this typing stuff and thought I had posted a reply but I cannot see it. No, I didn't have Raynauds but what is now diagnosed as nerve root irritation when lying supine. The hospital and surgeon no longer offering ETS because of peer group discussions - several countries as well as some in the EU have banned it due to not just comp sweats but other unrecognized (by the neuro's et al) symptoms. I sought legal advice and because I ackowledged that the surgeon had informed me about the possibility of comp sweats the advice was no go. None of my other symptoms are accepted, even by my own local doctor, by the medics... so ... The nuero-surgeon agreed that he had not seen such severe comp sweats but could do little except see a medical doctor who might prescribe drugs such as Ditropan, Robinul or Probanthene. Has anyone heard of these? Its even colder and wetter than last post - I live in the English Lake district high up and I think I need a new warmer country where the weather is dependable. Any suggestions. Dem hi dem you can come live in nz it is warm but not too warm and surrounded by ocean so you can take a dip in the sea within 15mins drive. You can come live with me (i suffer from CS) too so we can sweat together!! :O)
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