16-05-13.ETS交感神經切除術摧毀了我的生命

IMPACT OF ETS ON MY LIFE


This document details the severe symptoms of a condition called Compensatory Sweating (C.S.) that I have suffered ever since an Endoscopic Transthoracic Sympathectomy (E.T.S.) operation I had in Ireland in May 2003.


這文章詳述我在2003年5月在Ireland接受ETS手汗交感神經切除術後的反射性出汗等後遺症。


P.S. I have deliberately left out the name of my surgeon.




Weeks Post Operation


Within a week of my operation I had the Compensatory Sweating symptoms. My first real case of C.S. was in a night club when my tee-shirt was drenched in sweat exactly from the nipple line down but perfectly dry above!


手術後一星期內，代償性出汗就出現了。第一次是發生在夜間俱樂部，T-shrit下半身濕透，乳頭以上卻是乾的。


I knew I was definitely in trouble when I played my first game of golf after the operation on a nice summer’s morning. Despite teeing off at 7.30a.m. my back was soaked in sweat and my underpants were soaked through. I would have previously never sweated at all in these conditions. I have had the C.S. problem ever since.


手術後第一次夏天早上打高爾夫球時，我知道我碰到大麻煩了。早上7:30我才開完球，汗水就濕透我內衣。我以前從來不曾這樣大量流汗的。從此，我就被困在反射性出汗中。



Compensatory Sweating (C.S.)


The term Compensatory Sweating is actually a “misnomer”. Its title would imply that the body will sweat the same amount (from the armpits down) to compensate for the sweat that would have been produced by the head and face. However this is simply not the case. The surface area over which I now sweat is at least 10 times the area of the head and face. Factor in that the rate at which I now sweat is at least doubled or trebled, then this means that I now sweat at least 20 times what I previously sweated. “Post ETS Hyperhidrosis” would be a far more accurate term for this sweating.


代償性出汗這名詞並不恰當。代償的意思是指不在手、臉出的汗，轉移到身上其他地方出汗。但事實上並非如此。我以前只有臉手出汗的面積多了10倍以上。現在出汗的機會比以前多了2~3倍。這就表示說我現在出的汗比以前多了20倍。以“ETS後多汗＂來描述更為貼切。






Post ETS “Reflux Sweating” 　ETS後的＂反射性出汗＂


Because the sympathetic nervous system chain has been severed it doesn’t function properly anymore. When my body gets warm my brain sends a signal to the body to start to cool itself. Because my face and head can no longer act as cooling mechanisms the only option left to my body is to cool itself from the chest down by sweating.


由於交感神經迴路已被摧毀無法正常運作，當我身體溫度增加時，腦部就會下指令，讓交感神經亢奮以便出汗。


Whereas before sweat could easily evaporate or be wiped off my brow and hands, obviously sweat from beneath clothing cannot - therefore drastically reducing the body ability to cool itself. As result my body now sweats profusely. However worse still my brain is obviously not receiving information back through the sympathetic nervous system. It doesn’t know when my body has cooled back down again and in the absence of this vital information it just keeps on sweating vigourously – a termed called “Reflux Sweating”.


手術前，上半身能流汗的時候，熱氣水氣很快就散發在空氣中，而達到降溫較果。但現在出汗部位都被衣服遮住，散熱效果並不好。這樣一來，我的身體就大量出汗了。由於我的上半身是熱的，不會出汗，因此無法降溫，腦部所接收到的訊號仍然是”高溫”的，因此拼命指令汗腺流汗，但是由於上半身汗腺已無法接收到（交感神經已被切除）流汗的指令，因此其他部位就開始大量流汗，不管下半身怎樣流汗，上半身仍是熱的。因此”過熱”的訊號就源源不絕的傳回腦中樞。因此這種異常大量的流汗不能叫代償，而是”反射性流汗”。


As a result my body now goes into uncontrollable floods of sweat that can last for hours on end. This happens from the armpits downwards and includes everything – my chest, back, groin area, bottom, legs and feet. My clothes are literally drenched through.



Post ETS Anhidrosis.　ETS手術後上半身無汗


• I have complete anhidrosis from the nipple line up. I do not sweat at all now on my neck, face, head, arms or hands. As a result my skin can get very dry and I have to continually put cream on these areas. Also as there is no natural cooling of these areas it leaves them susceptible to overheating and damage to sunlight. It is amazing once it is taken away how much I miss the refreshing cooling sensation of sweat on my head and face.


我的乳頭以上完全無汗。現在我的頸、臉、頭、上臂完全不會出汗。這樣下來，我的皮膚就變得很乾，讓我不得不經常使用乳液。這些部位由於無法降溫，很容易被太陽曬傷。我以前常享受讓太陽曬，但ETS手術後，流汗後清爽的感覺永不再來。


• My hands have become so dry that the skin peels and cracks – so much so that on occasions they actually bleed!! I have to put copious quantities of moisturizer creams and E45 on them. Because my hands are so dry I cannot lift up anything or even turn a page of a book without licking them first – people in work have even commented on this


我的手因為太乾，有時候會裂開，甚至流血。我常需要擦大量的潤濕乳液。手乾到連拿東西都很難過，就連翻書時都要先把手指用舌頭舔一下。


• I suffer from dry spots and rashes all over my body.


我的皮膚乾燥到常起疹子。


My Compensatory and reflux Sweating Symptoms　我的反射性流汗症狀

My sweating would be acceptable if it occurred normally and naturally during heavy exercise or in very hot environments.


在ETS手術之前，我做劇烈運動或在非常熱的環境中，流汗情形都屬正常，但在ETS後，就完全不一樣了。


However this will happen in the following situations:-


以下是我ETS術後流汗的狀況：


• during even the lightest exercise – 就算做很輕微的運動也會大量流汗
• going for even a short walk 走一段很短的路
• walking around the town shopping　逛街
• playing two holes of golf even on a cold day 冬天時打兩個洞的高爾夫球
• even just sitting in a chair in a warm room or warm day.　天氣暖和時坐在椅子上也會流汗
• after a warm shower even when I finish with a cold shower as I always do.
洗溫水澡或冷水澡後都會大量流汗
• asleep in bed (I have woken up drenched in sweat on numerous occasions –not from nightmares or anything like that).
　在床上睡著時也會大量流汗，有無數次醒來時大汗淋漓，並不是因為作惡夢
• even drinking a cup of tea　喝一杯茶
• eating my dinner (and I don’t mean a curry- just a normal dinner)　
吃晚餐（吃很普通的東西，不是指咖哩，也會流汗）
• even wearing just a pair of shorts on a hot day.
在大熱天穿短袖衣服和短褲也會大量流汗




Other complications of my condition are as follows:-


• my feet often are burning at night in bed (I have to put cream on them just to try and cool them down). Sometimes I even had to put an ice pack on them it is so bad.


我的腳經常有燒灼感，有時要用冰袋敷才會好一點


• I generally feel very hot in bed (quite often have to sleep with just a sheet over me) and as a result I have extreme difficultly getting to sleep.


在床上我經常感覺到很熱（我經常只穿一件襯衫睡覺），因此，我很難入睡。


• When I play a round of golf (18 holes) I sweat so much that to my body it is probably the equivalent of running a marathon. This leaves my leg muscles stiff, sore and cramped up. It leaves me physically exhausted something that never happened me before.


如果我打完18洞高爾夫，流汗多到好像跑長途馬拉松，運動完感覺小腿僵硬、酸痛及抽筋


• My joints have become extremely stiff. My left hip in particular has become very bad and I cannot stretch on this hip properly.


我的多個關節變成很僵硬，我的左大腿關節無法伸展


General day to day impacts on my daily life and lifestyle:-


• My office tends to be warm and as a result I dread going into work because I know that I will be sweating profusely for most of the day. Every morning in work I open all the office windows (despite the complaints of some!). I have a fan continually switched on and directed me. Even on days where people all around are wearing sweaters I can be in floods of sweat even just sitting in a chair at a desk!! Several times a day I may have to go out to the toilets, get some toilet roll and wipe the sweat from my chest and back – at this point my vest will be completely soaked through. Quite often I am drenched in sweat again by the time I get back to my desk. Hardly a week goes past without me wanting to quit my job – only my determination keeps me going. If I had a physical job to do then I would never be able to get through the day.


我辦公室的溫度較高，因此，我很怕在裡面工作，因為我知道我會整天都大量流汗，每天早上，我都把所有門窗都打開（不管是否有人抱怨）。我有一支電扇一直開著直對我吹，大白天，大家都穿汗衫時，我就算坐在椅子上也全身是汗。有好幾次，我上完洗手間用衛生紙擦胸前及背部的汗，這時，內衣背心也都全濕了。我經常害怕再回到座位上。我無時無刻都想離職，要不是有堅定的意志支撐，我很難工作完一週，如果有較耗體力的工作，出汗的窘態可能讓我連一天都無法支撐過去。


• I have to wear loose fitting clothes to try and get air circulating about my skin in order to keep as cool as possible. I would prefer to dress in a neat and tidy manner with shirts and tee-shirts tucked into my pants or jeans. However I have to wear them loose and sloppy and not tucked in. I could not even contemplate wearing a suit or even a shirt and tie. This gives me an unprofessional look in my office which will hamper any professional advancement. I have to wear dark clothes because they don’t show up the sweat to the same degree. As a result I can only wear a fraction of my clothes.


我必須穿寬鬆的衣服，讓自己越涼快越好。以前我會穿著合身的衣服，並將衣服紮入衣褲或牛仔褲內。現在我必須穿著寬鬆拉塌，無法紮入褲內，我無法穿上套裝及打上領帶，這讓我在上班時無法穿著整齊，有損專業形象。我只能選擇深色衣物，以免顯出汗漬。如此，我許多衣服都派不上用場。


• I have to wear vests under my clothes to soak up the sweat even though I hate wearing them and never had to before. It makes me feel like an old man.


以前我並不穿內衣背心，但現在我不得不穿，因為它可以吸收汗水，這樣令我自己覺得像個老人。


• My feet now sweat deplorably and I have to wear sandals to work on a warm day again making feel like an old man.


我的腳極度會流汗，我必須穿拖鞋上班，這又讓我倍顯老態


• I dread going shopping because the walking between shops will leave me soaked.


我恐懼去購物，在店中行走，讓我濕透。


• I dread going to warm pubs or niteclubs.　我恐懼去溫暖的酒吧或夜總會。
• I dread visiting friends or relations whose house might be warm. 　我恐懼到親友家，他們家有可能溫度較高。
• Playing golf on a warm balmy summer’s evening used to be a pleasure for me but now it is a nightmare situation which I cannot enjoy as I am soaked in sweat from start to finish. I have completed rounds of golf only to find a white ring around the perimeter of my tee-shirt and underpants as a result of all the salts I have lost through sweating!! I am like a horse lathered up in a white sweat!!
我曾樂於在溫暖的夏夜打高爾夫球，現在卻是我的惡夢，因為我會從頭到尾都浸濕在汗水中。我曾打完一場球，發現我的T-shrit及內褲有一道白色的邊緣，那是我流汗後留下的鹽巴，我像隻有白色汗沫的馬。
• Going to the driving range and hitting a bucket of 80 balls even in the cool of the night at 10.00pm leaves me soaked in sweat.
在清涼的夜晚10點左右，我去高爾夫練習場或打80個球，仍舊讓我汗流夾背。
• I have suffered so much worry, stress, anxiety and sleepless nights as a result of this operation. I have felt suicidal at times. In fact at times my fantastic seven year old daughter has been one of the few things that has kept me going.
這個手術之後，我痛苦的度過許多憂鬱、壓力、焦躁、失眠的夜晚。自殺的念頭經常升起，事實上，靠著7歲愛女的支持，才讓我走到今日。
• Because I sweat so much in going to the gym or playing golf it leaves me totally drained and exhausted afterwards. It is as if my body has run a marathon it has lost so much fluid. I tend to feel very stiff afterwards probably as a result of all the lactic acid that has built up in my muscles.
因為我流太多汗了，所以去健身房或打高爾夫都讓我筋疲力盡。我的身體好像跑馬拉松一樣，失去太多的體液，就覺得肌肉僵硬，可能是所有的乳酸都留在肌肉內。
• I now fear close contact or intimate situations with women.　我害怕與女人有親密的接觸。
• I cannot even consider going abroad on a sun holiday now – something every normal person would naturally look forward to.
人人都想在豔陽天出遊，而我卻想都不敢想。
• A simple pleasure to most people – a nice warm summer’s day is now a nightmare for me
＂一個溫暖的夏天＂對以前的我及現在的大多數人來說是一件美好的事，但對現在的我來說卻像惡夢。
• Not a day goes past when I am worried and stressed about whether my condition will ever be cured and wishing I never had this operation. Everyday I wish that a miracle could happen and I could return to my original state.
我每天都在盼望奇蹟出現，就是回到動ETS手術前的自己。
• I am depressed. My mind has got slower. My capacity to assimilate information has been reduced. I find it hard to concentrate and focus mentally.
我變得低潮，我的思緒變慢。我閱讀吸收消化理解的能力減退，我的注意力已經很難集中。
• I have used up vast amounts of my spare time reading up on ETS on the internet and emailing others in a desperate attempt to find some way out of my predicament.
我用大部分的休閒時間上網搜尋有關ETS的資訊，e-mail給其他同病相憐的人，幾乎不顧一切的想去找辦法突破現在的困境。



My blushing.　有關我臉紅的問題


My blushing problem has significantly reduced. I find that instead of blushing I will sweat on my body. It is as if the heat is dissipated through my body instead of on my face and head. However this has been attained at an astronomical price. While the blushing was bothersome, it only occurred in social situations – it was temporary and would pass within a minute or so. The C.S. is permanent, can happen irrespective of the situation and takes hours to pass. I would give anything to go back to my original state if at all possible.


我原本有的臉紅的問題在手術後很明顯的消失了，但取代臉紅的卻是身體的出汗。我易臉紅的困境雖改善，但卻付出了天文數字的代價。臉紅對我來說是有點麻煩，但那只發生在社交場合－它是暫時性的幾分鐘就消失，反射性出汗卻是永久性的，隨時隨地發生，要好幾小時才會過去。只要能回復到手術以前的情況，我願付出一切的代價。




E.T.S. Forums.　ETS論壇


At this point in time I started to visit websites that had ETS forums. Unfortunately I had previously never known such things existed - I wish I had known about them before my operation but my knowledge of the internet was limited at that point. As soon as I found these forums I knew I was in trouble. I came across hundreds of cases with the exact same C.S. symptoms as myself.


因此我開始上網找有關ETS的論壇。很不幸的，我以前並不知道有這些存在，要是在手術前我能知道就好了。那時我對網路的知識還不夠，自從我找到這些論壇後，我知道我的麻煩可大了。我找到好幾百個跟我有同樣ETS手術後反射性出汗的人。


A lot of these patients are in despair and can only manage their symptoms as best they can. Almost none have ever had any improvement in their condition. I quickly realised that this operation had condemned me to a life of hell.


幾乎沒有一個人能有任何的改進，我很快的認知到這手術把我帶進了地獄。


These websites also list numerous other symptoms resulting from this operation most of which I have thankfully avoided.


這網路也提到了許多其他的ETS手術副作用，但還好感謝我大部分都還沒有。


The list of potential side effects from ETS include:
Decreased physical capacity 　減低運動體能
Reduced blood circulation 血液循環變差
Stomach problems (constipation or diarrhea) 　腸胃道問題（便秘或腹瀉）
Impotence 　陽萎
Thermoregulatory collapse　體溫調控系統崩潰
Dizziness　暈眩
Tinnitus　耳鳴
Rhinitis　鼻炎
Skin Problems　皮膚炎
Severe Hyperhidrosis　嚴重出汗
Oversensitivity to stress 　對壓力敏感
Oversensitivity to normal stimuli (sounds and light)　對正常刺激反應過度（聲及光）
Muscular weakness　肌肉無力
Horners syndrome 　荷納氏症候群
Reduced pulse　脈搏變慢
Shortness of breath 　喘不過氣
Pain　痛
Chronic fatigue　慢性疲勞
Death　死亡
Raynauds disease　雷諾氏症
Palpitations　心悸
Puffy eyes　眼腫
Flushing　潮紅
Bradycardia　心博變慢
Gustatory Sweating – sweating while eating.　味覺型出汗－吃東西時出汗


Of these symptoms I now suffer from reduced pulse, skin problems, dizziness in warm weather, decreased physical capacity, fatigue, occasional gustatory sweating and severe Hyperhydrosis (CS).


上述許多症狀況中，我有心跳變慢、皮膚問題、天暖時暈眩、體力差、疲勞、味覺型出汗及嚴重反射性出汗。


Here are links to some of these websites
http://www.noetsuk.com/
http://www.ets-sideeffects.netfirms.com/
http://p069.ezboard.com/betsandreversals
http://www.esfbchannel.com/cgi-bin/yabb/YaBB.pl?board=Post-ETS
http://www.truthaboutets.com/
http://home.swipnet.se/sympatiska/index3.htm






ETS “Reversal”　ETS逆轉手術


A number of E.T.S. surgeons now claim to have a “reversal” operation - it is a transplant and bypass operation. By using a donor nerve (either the “sural” nerve from the ankle area or an “intercostal” nerve from the chest area) they use this to bridge the gap across the severed nerves linking the live parts of the sympathetic nerve chain. In my case this would mean joining the still live T5 tier to the still live T1 tier. The donor nerve dies within a few weeks but it acts as a conduit for fresh nerve to grow along it. This can take years according to the surgeons. However from personally meeting patients who had this “reversal” the only improvement it has made is in returning some slight sweating to the anhydrous areas - mainly the hands and head. It has not decreased the C.S. at all which is the most severe symptom that needs to be resolved.


ETS逆轉手術，迄今無成功案例。






Medication.　藥物


One other solution is medication. There are three drugs I know of used to control sweating – Ditropan, Probantine and Robinul. I have tried Ditropan and Probantine but apart from leaving me with an outrageous thirst they did nothing for me. I have not tried Robinul yet although it appears to be the least effective of the three drugs. In any case I do not want to be on medication for the rest of my life especially for a condition I never had before!!!


我測試過Ditropan這種藥物，但引起口渴又無效果。




Stem Cell Research　幹細胞研究


Currently the only real hope of a successful reversal operation is through “Stem Cell Research” - using stem cells to grow new nerves to replace the ones that have been destroyed. Even then it probably would rely on a new grafting technique to successfully incorporate them into the sympathetic nervous system. However having communicated with a number of research companies and laboratories and myself and others have been told that a successful reversal would be perhaps ten years away - if at all.


迄今尚無具體成果