Images of ETS Side Effects
Images from post-ets patients that suffer from overheating and lack of sweating in their upper extremities. This is not after any physically strenuous activities; this is their bodies in cool temperatures standing in place or very minimal activity.
Submitted by Karina from Australia | Date May 15th, 2019
Submitted by Bourke Willmot from California, USA | Date May 15th, 2019
Submitted by Ewan from the UK | Date: June 6, 2019
" I went through ETS (Endoscopic Thoracic Sympathectomy) for excessive palm sweating in 1999 and 2000. Then in 2001 I had a lumbar sympathectomy for excessive foot sweating.
Around early 2002 I developed severe compensatory sweating on my back and legs. Through the years this has also spread to my stomach, sides and chest.
The compensatory sweating has had a huge negative impact on life. I can often only walk for approximately five minutes before I am sweating profusely all over the aforementioned areas. Other side-effects include;
- Heat intolerance, and my whole body constantly feels overheated, including my face, which leaves me always looking and feeling flushed. - Lack of emotional feeling (for example unable to cry, even at funerals) - Tiredness and severe loss of energy - Frequently feel dehydrated, no matter how much water I drink - Headaches - Burning feeling, especially in the back, but also stomach, chest, legs etc. - Often feel faint because of heat intolerance, even in mild-to-cool weather - Dizziness - Compensatory sweating makes everyday life extremely embarrassing/difficult. This has led to depression and very low self-esteem, morale and confidence (far worse than pre-surgery). - I now sweat very little (much less than a ‘normal’ amount) from my underarms, face, scalp, forehead and neck. My forehead gets very dry and itchy. My hands and feet are also extremely dry, even after a 60 minute jog for example.
One of the most painful aspects of this whole situation is that I believe (and always will do) that sympathectomy was totally, and utterly unnecessary for my condition. I was told in 1998 by a dermatologist at a UK hospital that there was nothing that they could do to help my hand and foot hyperhidrosis. She did not tell me about the non-surgical treatments available for hyperhidrosis (such as oral medications, topical medications, botox injections, and iontophoresis), and instead of getting a second opinion or referring me to a different dermatology department at one of the other local hospitals (i.e. one where I could have received iontophoresis which would have been the correct treatment for me I feel, as it was/is safe and effective, yet non-surgical and non-invasive), she referred me to a local vascular surgeon.
Surgery was therefore, in my opinion, wrongly presented to me by the UK healthcare system as the only alternative to a lifetime of extremely sweaty (at times literally dripping) hands and feet. The surgeon I recall told me about the possible side-effect of compensatory sweating (across the shoulder blades on the back) and drooping of the eyelids, but I have also suffered all of the aforementioned.
My GP assured me in 2003 that it was just taking time for my “...body to settle” and that things would “...get better with time.” But, sixteen years on and my situation has only got worse. The compensatory sweating has spread (for example in 2003 I did not sweat profusely through my stomach or chest), and I have spent thousands of pounds over the last sixteen years on a vast range of products and treatments (for example acupuncture, herbal medicine, homeopathy, vitamins, supplements, medications etc), none of which has helped.
It is horrible trying to function on a daily basis with the range of side-effects. I believe that sympathectomy is sometimes (as in my case) being presented to people as the only alternative to living with their original hyperhidrosis condition in full, when in reality there are several non-surgical treatments available to help. Most of these I did not even know existed until it was far too late.
I hope that my story is helpful for any person reading, whether a professional, or perhaps someone who might be considering surgery. Based on personal experience, I believe that these operations often cause an awful lot more problems than they solve."
Submitted by Richard from the UK | Date: June 1, 2019
" I had ETS surgery in my early 20s for hand sweating and it was the worst thing I have ever done and my symptoms are getting worse every single year! It has been about 20 years and I cannot get any help as no one understands how I feel and there is no adequate support for this condition. Health care professionals have not even heard about this condition in the first place to even begin to help me.
A lot of people have said how they feel with their symptoms and I can relate to many on the Facebook support group, however this is what I’m currently going through... I have noticed I feel very cold on my right side. I get goose bumps and shiver just like I'm outside in freezing conditions. My body temperatures fluctuates so much in the colder temperatures. When it’s hot I physically pour with sweat on my head on my chest and on my back like I’m in a shower...It's hard to explain the confusion this causes me but basically the ETS surgery has interrupted the nerve signals to the brain as the nerves have been severed. Furthermore, I was never informed that these adverse effects could be so severe.
The frustration of dealing with the shivering or cold chills, or prolonged excessive sweating, and/or overheating is mentally draining and causes me to have anxiety attacks just doing daily basic every day tasks. This is not practical for someone to have to go through this every single day it’s physically draining and making me physically sick. I have to change my clothes numerous times throughout the day, I have to bath/shower several times a day, particularly in the summer. My scalp is always dripping wet so I cant keep my hair neat ever! The sweat keeps dripping into my eyes and ears down my back.
There are so many things I have to factor into day to day living and people are expected to work in this condition?! It is exhausting having to deal with this and it’s making me so depressed. I don’t eat because certain foods trigger the sweating. I hate going out as just the slightest change of temperature triggers my sweating outbursts. I feel my worst when I’m out because of all of this, and suffer with social anxiety I have even lost friends because of it. I just hope one day there is a cure and no one has to go through what I do on a daily basis."
Submitted by Bernard Tome from Cape Town, South Africa | Date: June 1, 2019
" In 2006 I developed knee pain after exercise. My GP referred me to a specialist. While he was examining me he noticed that I sweat more than usual under my arms. I told him that I think it is a genetic issue as my dad also sweats a lot under his arms. I thought it odd that he focused more on the sweating than my knees. He told me that he knows a doctor who can perform a simple operation that will stop the sweating. I made it clear to him that it doesn't really bother me that much but he convinced me to make an appointment at this doctor. My medical aid also paid it in full.
I only briefly spoke to the cardio-thoracic specialist. It could not been more than 5 minutes. I was not told about any possible side effects. Within a few minutes the paperwork was done and a date set for the operation.
I woke up with two tubes in my chest and in unimaginable pain. I was given morphine and was unaware that I'm allergic to morphine. Morphine causes me not to be able to urinate on my own. They had to give me a catheter. More pain... I was in hospital for a week. The tubes were pulled out on the third day.
When I got home I noticed the sweating on my back and abdomen. I was shocked. I immediately phoned the doctor and made an appointment. I was told my body is adjusting to the operation and that it will take some time. It was explained as completely normal. 13 years later the compensatory sweating is still there.
I have severe compensatory sweating on my back, groin, abdomen and legs. I go through 4 to 5 bottles of Sweat-stop per summer. It is a pain applying it but it stops the sweating. I cannot survive without Sweat-stop from Germany. My government adds 45% import tax as they see is as a cosmetic product. This makes it very expensive.
For the rest of my life I will have to apply Sweat-stop at night otherwise I will not be able to live a normal life. I teach. There is simply no way I can stand in front of a class with wet pants! So, every night I use Sweat-stop, stand in front of the air conditioner to minimize the burning and itching. I have the AC on its coldest. When you use this product you absolutely must remain cooled down. Otherwise you will BURN AND ITCH. So, don't t plan on being intimate!
This operation caused so many problems. I go to gym 5 times a week and I want to sweat somewhat, just to cool down. Unfortunately with Sweat-stop you can't really control it. It stops me from sweating at all. The result it that my skin gets extremely hot. This cannot be healthy but I don't have a choice. I'm between a rock and a hard place.
If only I knew about Sweat-stop before the operation I would have used it under my arms. Now I need to use it all over my body.
This condition also caused me to develop seasonal depression. Every October to November I get very depressed. The psychologist told me it is due to the summer approaching and the fact that I will have to turn my life upside down just to not be seen as a freak.
I hope they eventually ban this operation. "
Bernard Tomé Cape Town, South Africa.
Submitted by Brandon from California, USA | Date: May 16, 2019
" I had Endoscopic Thoracic Sympathectomy Surgery when I was 18 years old in 2014. I needed a solution for my severely sweating palms, also known as palmar hyperhidrosis because at the time I felt like it was becoming an issue when shaking hands and meeting people. I researched online for a solution and ended up finding the surgery as one of the top choices on Google. This surgery was described as cutting the nerve that controls hand sweating; what most doctors/surgeons that promote this surgery do not disclose is the fact that this particular nerve does not just control hand sweating, it runs parallel to the spine and is attached to many vital organs like the lungs, heart, upper extremities (skin on face/upper chest arms etc.) This is why many people's heart rates have dropped immediately after the surgery.
My surgeon did not explain any negative side effects to me. He simply said, "it is a routine procedure and I've done hundreds of these." He also sold me the surgery without offering any alternative treatment. He said, "Have you tried deodorant on hands, medications, or iontophorosis? ". I responded "no" and he followed by saying, "well none of those are good treatments, you want something permanent that is guaranteed to work". Me being an 18 year old believed everything the doctor mentioned because after all he is the professional. Now I am not so naive.
My side effects consist of severe dryness of my head, upper chest, upper back, arms, and hands. I also overheat very easily when going outside in moderate temperature on a sunny day and sweat profusely from my abdominal and back areas (Compensatory Sweating). My last and what I believe to be my most severe symptom is what many patients describe as a 'mental fog' or depersonalization. This side effect makes me feel detached from my surroundings and I receive no adrenaline rush from activities, even physical activities. It feels like I'm groggy 24/7 even with a full nights rest. I've even had a sleep study and I have no sleeping conditions such as sleep apnea. I also have spoken to my psychiatrist that agrees that the severed sympathetic nerve most likely is not releasing enough dopamine and complementary chemicals to my brain.
I am 23 years old now and just want to live a normal life as a young adult. I used to be an athlete and enjoy the outdoors now I can't, no matter how hard I try. My quality of life was taken from me so soon by a surgeon that never disclosed any risks of this surgery. I am now dedicated to searching for a solution. "
Submitted by Khalif Patel from Los Angeles, California, USA | Date: May 15, 2019
" My name is Khalif Patel I have been a sufferer for over 16 years I had my initial Endoscopic Thoracic Sympathectomy (ETS) procedure done back in 2003 by Dr. Nielsen in Texas, I was cut bilaterally at the T2 level. My procedure was done for Palmer hyperhidrosis. I found ETS in an ad in the paper. I looked into the procedure and did extensive homework before agreeing to have it done, thats when my life would change forever. When I woke up from the surgery I felt detached from the world ( depersonalization feeling/’Mental fog’). I thought it would have been because of the sedatives I was under, but it continued on until this day. It has been a total nightmare. I am literally living in hell. This surgery has ruined me and thousands of others because of the false information that was given to us. The side effects I feel now are absolutely disabling. I have severe neurological pain throughout my body that is pretty much unbearable. I have been to doctors and they cannot seem to figure out what is wrong with me because it is neurological it is very difficult to detect. I have severe arthritis in my bones and it feels as if I need to crack my back every other minute ( compressed pressure in my neck and back). My muscles burn severely doing any type of physical activity and I experience severe circulation problems ( Hands, arms legs go to sleep within minutes Of been in one position).
I have severe problems with my skin I can no longer go out in the sun my skin seems to burn physically and literally painful, ( Basically cannot stand the sun in many ways). Myeyes cannot adjust and stay dry and watery at the same time. My upper extremities are paralyzed to the skin I have no feeling in my face arms or hands my head feels constantly hot and has no cooling affect; this is very important because your head is what dissipates the heat throughout your body!
Endoscopic Thoracic Sympathectomy surgery has both destroyed me physically and mentally and needs to be stopped. My face feels as if its blushing all the time, my ears stay hot, and it is very aggravating. I suffer from hundreds of different side effects from severe mental fogginess, severe fatigue, depression, severe anxiety, severe arthritis, extremely severe pain, blushing , flushing, and to top it off all of my initial problems came back.
Sweating has returned to my hands just as bad as it was before ETS along with all these other side effects. I also sweat on my head when doing physical activities but it has no cooling affect at all! And my head is numb to the touch. When I do sweat during physical activities it’s like my skin stays cold with goosebumps and sweats at the same time very nasty feeling and very uncomfortable. I miss my old body so much I would give my life to go back to Pre-ETS. Another thing I would like to share is gustatory sweating GS, I also suffer from this severely. Mine is so severe that just by the smell of certain things such as chocolate sets my head into a rage of sweat or even taking a bite of cheese makes this happen. It’s a very uncomfortable feeling because it makes your skin feel like its itching and burning and sweating at the same time; it is horrifying. I also suffer from sweaty feet after ETS which I never had before. My main concerns are the pain, it is unbearable.
Ever since my procedure I have been looking for a true reversal. I am a part of a few groups and one group in particular where I am very actively involved. I have contacted doctors, surgeons , neurologist, stem cell researchers etc. in hopes of getting me and thousands of others hope for repairing this cauterized nerve. I want others to be very aware that this is not an alternative for hyperhidrosis stay away from this surgery it will ruin your life."
Submitted by Alperen Tekin from Turkey | Date: May 13, 2019
" My name is Alperen and I’m 25 years old and from Turkey. I’ve had dealt with hyperhidrosis of the head and hands since I was a child. In the month October 2017 it turned out that the cellphone I recently bought had been a stolen one. So I had to go the police station and have a talk with the attorney general. During our talk I sweated so much that I could tell he was thinking I was the thief.At that time I was out of a job. I had torn my ACL and was in Konya to receive a surgery. I had also recently found out that there was such a thing as a surgery for excessive sweating. I thought, why not? I am here surgery. Make that double!
I am usually more of an inquisitive type but the surgery sounded so good that I decided not to look for its side effects. I was obese, I had no girlfriend, I was out of a job, depressed and anxious... And on top of that, I was a sweaty beast. I hated my life and decided to gamble it away. Gamble I did and still here I am to tell the story. Nothing resolved, nothing improved. Instead things got worse, much much worse.
The doctor who did my surgery was a weird guy. He talked in an anxious but trustworthy tone. He grabbed my sweaty hands as I was standing near his desk and told me that my nervous system was overactive and his surgery would fix that. “Think of it like this,” he said. “If you were a car, we’d have to return you.” Not for a single second did I think that he would fix my overactive nervous system by burning it. I was up on the clouds, even his rude remark did not affect how I felt. I went to where I was staying, finally looking to the horizon with hope. When the day of my surgery came I went to the hospital early in the morning. They wheeled me to the operating room where I laid on the table naked with a sheet covering me. The good doctor entered and told me that I would still sweat “normally” from my torso and if that bothered me he could do another surgery but that would affect my sex drive. As I drifted to sleep from the anesthetic, he told me to not go into the light.
I woke up with a sense of bliss whose true nature I would later learn to be the lack of adrenaline flow in my brain and that “bliss” is the profound vagueness which still denies me anything profound but itself. I used to be a writer. I had a powerful imagination. I would find the humor in everything. Even the dictatorship in Turkey. I was energetic. I did not care what others think. Now I am like a program with only two sets of modus operandi, that of logical dissertation and that of crooked, depressed thinking. Even my depression doesn’t hurt me. It just affects my thinking. The summer was hell. I sweated from all over my body if I so much as got out of bed. And I cried thorughout all those days not because I felt sad but because I could not feel a thing.I became a different person then. No emphaty, no symphaty, no nothing. I was sleeping, waking up in a puddle, waddling through the day, feeling like a took a permanent antipsychotic, not making any sense with no drive whatsoever. An automaton barely reacting to any stimuli coming my way. I proceeded to confine myself to the limits of my room, hating everything in creation without discrimination. I thought nothing could be worse, then came the nerve pains, hair loss, bradycardia... Now the sweating is the least of my problems. I alienated everyone around me, became self-centered and in that isolation nearly lost my identity. Being a guy in his mid-20s without a personality, I began to analyze others to deduce how should I react to things and in what intensity. I became crippled with social anxiety. I couldn’t function without modafinil.
Then I adjusted to my reality and sought out the fellowship of my friends on the ETS page on Facebook. There is a nerve regeneration surgery apparently but it costs $15.000 and the way things are going in Turkey, I feel like I could never find that much money. The situation is hopeless to be honest.So here I am. A guy doomed never to fulfill his potential and couldn’t feel a thing if he were to fulfill it anyway. Picture me standing amidst the ruins of a once promising republic with arms up in the air in disbelief from the sheer absurdity of it all, sweating through his shirt. May the image of me zap into your mind everytime you close your eyes and may you read my lips as I shout at the top of my lungs, screaming: “Never have this surgery!”, “Never have this surgery!”, “Never have this surgery!” "
Submitted by Markus from Germany | Date: May 13, 2019
" I am Markus. I had ETS when I was 23. The reason for ETS was hyperhidrosis (HH) at the palms which was very embarrassing with a high level of suffering. I trusted the surgeon who told me that there can be some more sweating at the Back or stomach, but everyone is satisfied. The consequences of the operation were not fully explained, like drop of the heart Rate and anhidrosis of the full upper body and severe compensatory sweating. Before ETS I only had a sweating problem at my hands.
After ETS I suffer from compensatory sweating at the rest of my body to the point it is disabling. I had to buy a car with air conditioner to be able to move during summer. I had to find a new job to work in a air-conditioned office. During summer for example I can not leave the office for lunch break as I would sweat through the clothes immediately. It completely restricts me in my spare time. Just to ride a bike leads to severe sweating, so I have an electrical bike now. That is no quality of life. If I would not have been in a relationship at that time, I don't know if I would have survived and took the daily challenge. There is not one day till then in my life I don't think about this traumatic operation and what it has caused to me. The original HH was far better than my current situation. This Post is dedicated to my beloved partner who endures my misery over years and always tries to be supportive. Thank you! "
Submitted by Rachel Bellamy from the UK | Date: May 12, 2019
" So from being as young as ten years old my mum noticed everytime she held my hand it was soaked. She observed and noticed I use to constantly wipe my hands on my clothes and keep to myself. It started to bother me once I started secondary school at the age 12. This was when I'd come home crying my mum decided to take me to the doctor and find answers. I was referred to the dermatologist who diagnosed me with hyperhidrosis and I was give dryclor. It worked for a while, but then it started to make me sore so I went back to my doctor to ask for something else, by this time I was turning 16 and starting college and the sweating had started in my feet and armpits also. The doctor gave me probanhine and it helped with the hand sweat only. Dealing with the dry eyes and dry mouth was difficult but I was just happy to have almost dry hands. I use to wear panty liners inside my t-shirt to collect the under arm sweat this worked for a while until my arms started to get sore from the rubbing on my skin.
By the time I reached 18 I completed my travel and tourism degree and started my air line cabin crew degree. It was at this moment in my life my sweating was out of control all I wanted to do was my dream and be an air stewardess but how could I do it with wet hands how could I serve and greet passengers with wet hands how could I hide the armpit sweat under my blue uniform, I decided to go back to my doctor and told him I'd like the ETS surgery. He referred me back to the hospital and I was granted the surgery. I was around 19 or 20 at this time in my life, I had the surgery and when I woke up I was dry everywhere was dry for the first time I grabbed the surgeons hand and thanked him I stroked my mum's face and cried with happiness, I applied for Thomas cook airlines and got my first job living my dream it was amazing.
I was so happy until around 6 months later, it came back with a vengeance the compulsory sweating hit me hard, in my back, groin, knees, feet, chest, belly, neck, thighs. It just got worse and worse. I had no control. I had to leave my job I spiraled into a deep depression. I've tried lots of other medications and treatments. I'm now waiting for something new to come available. I just deal with it now I don't work but I do have 3 amazing children and a partner who works very hard for us. Also I'm always cold I can not control my body temperature. I'm wet and freezing every day all day; It's embarrassing I keep myself away from the public as much as possible. I live in black clothes to hide it, I change 2 or 3 times a day. I cry about it at least once a week I pray every night for it to go away. I'm 29 I'm young and love life all I want is a cure, my career back, and I want to have fun and do things with my family. I shouldn't be hiding away but right now all I see is this being me for the rest of my life. "
Submitted by Javier Mora from Bucaramanga, Colombia | Date: May 12, 2019
" I'm Javier Mora from Bucaramanga, Colombia, and since I can remember, I've always had my sweaty hands. At that time I saw it as a big problem. So when trying to find a solution, I found out about the endoscopic thoracic sympathectomy operation (etc) which consisted of cutting some nerves to suspend the sweating of the upper part of the body.
I scheduled an appointment with Dr. Pimentel, and during the consultations he never informed me about the side effects this might have. He just told me he was going to have a little sweat on my back but he did not give me more information. I was finally operated on in January 2008, and from that moment I can say that the compensatory sweating was more critical than I imagined. I started to sweat from the chest down much more often, and the upper part of my body became dry, and in summer everything gets much more complicated. As I know there are many who want to find a definitive solution to reverse this situation. "
Submitted by Jim Catan from New York, USA | Date: May 12, 2019
" I had ETS surgery about 20 years ago. It was my only option at the time. I had facial sweating which prevented me from attending many functions and held me back from promotions. Initially, the surgery worked and I gained my self esteem back. But gradually my CS got worse. First by exercising and then all of the time. I had to be very selective with the clothes I wore to cover up the sweat marks. If it was warm or a stressful situation I would soak my shirt , back of my legs. But all in all my head stayed dry. About 5 years ago I started to sweat from my scalp. Especially when eating certain types of food. HH has had a horrible affect on my quality of life. Now I just sweat all over. "
Submitted by Josh Hartman from Indiana, USA | Date: May 7, 2019
" Hello. My name is Joshua Hartman from Indiana, USA. I'm 22 soon to be 23 this september 2019. I had the surgery ETS four years ago when I was 17. The surgery was to stop my chronic blushing that was triggered by my social anxiety. After dealing with it for 2 years I started Youtubing and Googling for a cure to stop my face and neck from turning red all the time. I eventually came across a video of a girl on youtube who had this surgery called endoscopic thoracic sympathectomy, "ets". When she woke up from the surgery she woke up with excitement and surprise her face stopped blushing from social anxiety situations.
This lead me to contacting my ets surgeon dr. Freeman of Indianapolis st.francis. He read off all the possible side effects. And I outweighed the pros and cons. And chose to risk a little horners syndrome and not sweating above the nipple line. And MAYBE, possibly "but very unlikely" CS. Just a couple side effects that really didn't matter to me as long as I can be happy and not blush.
So I got the surgery and when I woke up I instantly felt mentally weird when I woke up from the surgery. But I was on pain killers, so I brushed it off as medicine side effects. As weeks past after the surgery I still feel the same. I feel empty. I don't get excited. I don't have any enthusiastic emotions. Over the year and some after I start looking for people who also had this surgery. And I come across hundreds of people who suffer the same lack of emotional connection, less energy, low drive, no motivation, a feeling of emptiness, depressions, regret, and cs.
I suffer from CS as well and it is terrible like most other's. We were never told we would feel like this. If I was told id feel half alive than I did before the surgery I would've just stuck to the blushing. I felt hopeless and suicidal for about a year after realizing that I singed what feels like my soul/spirit away. I’ve cried remembering how I use to feel before the surgery all the Emotions, feelings. The highs and the lows of life that this surgery has taken away from me. I miss taking my dog for a walk and feeling ALIVE. I miss someone saying something funny and being able to laugh and feel it through my body.
We as the ETS community who have had this surgery would like a team to just help us out. This surgery was a scam. That’s why it was banned in its original country Sweden. I would personally like to first see a medical team put together just for us to do test. And find a way to use regenerative medicine such as stem cells and 3d bio print nerve grafts to help us heal and potentially reverse the surgery. I also think no one should have to go through this. And we deserve compensation for the years that were taken away from us. And last of all this surgery should be halted permanently. Thank you for reading this. Please help us. "
Submitted by Harp Sangha from Vancouver, British Colombia, Canada | Date: May 6, 2019
" First of all I didn't have much of a problem with sweating most of my life. I actually liked my sweating, when I played sports I didn't sweat much from my back or chest or legs, mostly it was head sweating. Honestly I loved the head sweating when playing sports, it came with an adrenaline rush. My head sweating was no worse than other athletes. Basically typical. I dated, partied, played sports, typical life growing up.
In the summer of 99 I would be writing on a paper and it would start to get soaked. My hands were dripping to a point. This had never happened in my life before. I went for an interview for a job and my hands were sweating. The employer was like why are your hands sweating. This had never happened to me before. I was a bit pissed of that getting jumped had caused a lot of issues for me.
I was complaining to my friend one day about these things. His wife was a nurse and he was like well they have a surgery that can get rid of your hand sweating. I went to my gp/family doctor and complained about all my side effects from the head injuries. He sent me to a thoracic specialist. A few months later I went to the specialist. He explained the surgery to me and something didn't feel right. I've always had these gut instincts. So I told him I wasn't really interested. He pulled a sales job on me, saying well there's an 8 months waiting period, let's just sign u up and then you can cancel later on if you want. I shrugged my shoulders and said ok. What happened I ended up cancelling the surgery but not in time. I cancelled 22 hours prior to the procedure and I guess you needed to cancel 24 hours before.
Here in Canada the medical services pays for your procedure. So it was supposed to be free for me. On the day of the surgery the doctor calls me up and says well you didn't cancel in time so you have to pay me 10000 for the room costs and nurses. I was like no I'm not paying you for something you didn’t do. He responded well I can set up a different time for you that way you don't have to pay. I should of smelled the con. I didn't, I said okay and a month later and had the surgery.
This is getting long and I said it would be a short story. So I'll try to put it too rest with this. My life has been hell since ets. Cs isn't the worst part for me. I can't exercise without massive pain. My thermoregulation is messed. The doctor's here pretty much made me look like a liar after the procedure. It wasn't until I went to the NIH and had studies done with Dr. Goldstein that I finally got some doctors to listen to me here in Canada. Now I have pain management with lidocaine infusions and I have a spinal cord rehab specialist that I meet up with. "
Submitted by Moshe Glam from Israel | Date: May 6, 2019
" Hi, my name is Moshe Glam and I am from the State of israel I've been suffering for 3 and a half years from the problem of sweating ETS And I'm just broken inside and I feel that since the surgery I have not really live...I lost my feelings, my mind does not think the same thing and it is less lucid and the hardest blow is compensatory sweating..
I sweat from the area under my chest and sometimes in my chest and my back includes all my legs, my crotches, my buttocks and my all my feet and before the operation I suffered only from the feet and hands.
And I am so sorry for this operation, all the things I would like to do like going to the beach and being in the sun all day, All of a sudden it now seems like a dream to me because I really suffer from the sun and my whole body is straight sweating and I always see spots in my shirt..And I'm ashamed and I do not like being like that and I do not really enjoy it when I try to go to the beach as I was before the surgery, There are days that comes this evening and I start looking back at my photos and my experiences, And I just start to cry and get mad at myself and I say this is the end of my life .. I can not find a relationship, bad for me is not good for me.
I'll be 26 years old in November and it just makes it hard for me over time because I'm getting old and I do not see hope for this life , I kept on facebook forums in all kinds of groups and I uploaded some of my posts but I can not really find a normal solution and something that is more safely.
Some people said that they tried to transplant a nerve and it did not really affect or really affected a little and is not worth taking this risk and I also saw that there are stem cells but I have not yet seen any posts of solutions.
I see a lot of posts of people who are bad for them and want to commit suicide and depressive people just like me and that makes me get into more depression, I really was a very happy person and I had a good life , the suffering I had in my hands and it did not suffer like this ETS And the fact that I live life does not mean thare i love my life.
I just know that there is no solution to get into more and more depression and will not help me because it will not bring me the solution I would be happy if you could elaborate on your technique, and how many patients do you have that they are satisfied with? What are your chances of success?maybe new possible options for the near future?like growth factors or stem cells?you considering anything else For the near future.. I am really hopeless and don't know what to expect but I really speak to you from all my heart and pray you can help me please...My English is not so good I'm sorry, And thank you very much. I attach a few pictures of mine to make you understand the terrible situation Moshe."
Submitted by Catherine from the United Kingdom | Date: March 26, 2019
" My name is Catherine, I'm am 35 years old and I live in the UK.I had ETS surgery in 2011 when I was 27 years old. I am now exactly 8 years post surgery. It is quite safe to say that my life is 100 times more difficult than it was before this surgery. It's extremely tough to get through most days and I have been left with many debilitating and disabling life long consequences as a result of this operation that affect me 24/7.
I am writing this from the heart, so it may not be perfect but I really want to get this out there. I had ETS surgery in 2011 for rosacea of the face, both my T-2 ganglions were bilaterally cut/removed located next to the spinal cord in the chest area. I did not know a great deal about the surgery at the time and it was explained as a simple and quick procedure (basically cutting a link in a chain) and appeared to be highly successful for my issue which had bothered me and just been an inconvenience really. If only I knew then what I know now!
I do not wish to blame anyone however, I will be sharing the details of my story to explain how I got to this point and what I have been informed of since the operation. If I can help one other person to not go through this then my story is worth sharing. Apart from not having any effect on the condition for which I sought treatment (I later found out I wasn't actually a candidate for ETS surgery with rosacea, sigh) I had nearly 2 years after surgery with practically no side effects. Life was good, and I had no idea what was in store for me.
Then 2013 hit. I started to suffer from chronic burning nerve/skin pain. This affected me everywhere but especially at the trunk of my body. It is severely hypersensitive, like the feeling of being burned. The burning sensations were accompanied by shooting/stabbing pains and other strange sensations.
6 years on I have undergone every nerve conduction study possible and the reason for my symptoms is concluded to be a neurological, sensory issue caused by ETS - my case has also been used at a well-known neurological convention but I've since learned I'm certainly not alone with pain after ETS! This pain has continued to worsen over time and now by body is so hypersensitive I cannot even pull a cover over my back at night in the middle of winter, wearing clothing is difficult and I cannot sunbath or go in any heat. It isn't pleasant, believe me. At the very same time I started to develop reflex sweating or compensatory sweating (CS). This has also continually worsened over the years and now I'm in a real mess with it.
At first, I would only be affected by the sweating when the weather was over 23°C and it predominantly only affected my back and chest, which was bearable. Today, this is a completely different story. I now sweat profusely from my chest, groin, buttocks, legs and feet and in the past year I have also started to sweat above the nipple line again which has lead to further issues. So now I am a permanent dripping mess and I sit writing this in a 9°C cold room basically in my own pool of my own wet.
Many areas of my body sweat constantly, for instance my groin area and feet, so I now also suffer from skin conditions in these areas which is extremely uncomfortable and painful. It is so bad I have to use padding in places and I literally pour sweat through my clothes. 8 years post surgery and I am also starting to sweat in other areas all the time - my neck, hands and eyelids, nose and cheek have just started to sweat abnormally too, I have no idea why my body is doing this!
I also wake up in the night (every night) due to severe all full body nights sweats which have increased to the level where I have to get up and change bedding and clothes. I also wake up through heat and often feel I'm on fire, it's so distressing. I was never told this could happen and had no idea of this being a consequence. The third major issue that started after ETS surgery (there's plenty of others but these 3 are the most disabling to me) is that I now suffer from severely compromised body thermoregulation. And I have to say, as horrendous the pain and sweating in my body is, this is probably the worse thing I have ever had to deal with in my entire life. It is hell on earth, and I do not say that lightly.
I have continually had a problem with feeling overheated in my body. This started in hot temperatures and upon exercise or exertion. I managed to cope with this until approximately 18 months ago when my bodies thermoregulation started to severely diminish and this has now become so compromised it has completely disabled me.
My thermoregulation means that I cannot control my body temperature in any way. I live with a constant fever in my body which never goes away and it affects my entire body radiating out into my legs and arms. I get constant cold and hot chills throughout my body which sting and I often start to shake quite profusely with them. This happens all day every day and never stops. I cannot cope with heat of any kind and am unable to walk into warm buildings, sit in the sun, or anything to that effect. On the opposite side sometimes my temperature drops and I am freezing I can't get warm or try to heat up as I go from one extreme to the other, it's paralyzing.
My lack of regulation means I burn up completely upon exerting any energy to an unbearable an overwhelming level, I struggle to walk about, do simple things like dry my hair or even walk upstairs. I have also developed extreme bodily itching along with symptom from the internal heat, by body is clearly not coping and if I try to do any activity I literally feel I am going to burst with the heat, I flush internally and constantly in my body and arms. I have also in this time developed a problem with my hands where they heat and burn constantly, if the are not doing this they are freezing cold, there is no in between.
There is many a night I am stood on the drive or at the door in temperatures around 5°C just trying to cool down. This severe side effect is noted in spinal cord injury patients, which is what I now have because of the surgery. I have also started to get too hot in the head and neck. It's almost indescribable at this level suffering.
Since surgery I have also developed many other symptoms including chronic pain, deep muscle tissue pain, I have had pain in my back at the site of injury that radiates through my upper back into my armpits and arms. This developed at the same time as my arms and hands started to 'connect back up' and when my symptoms appeared to get much worse though I do not know if there is any direct correlation.
I also suffer from gastric issues, a complete inability to exercise, lethargy, hair loss, other sensory issues, I feel like I am 90 years old in a 35 years olds body and I also have Frey's syndrome/ gustatory sweating which happens every time I eat. In my case it has my altered my whole body, to a severe level with terrible side effects.
So there you have it, my life 8 years post ETS surgery. I try to remain positive, I keep thinking where there is life there is hope even though I do feel like this is hell on earth. ETS was the worse decision of my life. It has affected so much, my life with my daughter, friends and family, I am unable to work and now registered disabled. All I want is a little quality of life back and I hold on to the hope of technology moving on as soon as possible. Thank you for reading and best wishes x"
Submitted by Michael S. from London, Ontario, Canada | Date: March 26, 2019
"The purpose of this letter is to give some information about Sympathectomies, my experience with it, and request help in searching for a treatment.
In 2012 I underwent a procedure called a Sympathectomy (aka ETS)which involved the bilateral clamping of the sympathetic chain at T3 & T4. The purpose of this surgery was to stop, or limit, my excessively sweaty palms and underarms. Prior to surgery I was told very little of the side effects, and was promised that the clamps could be removed if anything went wrong. For almost 5 years I noticed no or little side effects of the surgery, and I was satisfied with the result (reduced sweat on palms and underarms).
At the beginning of 2017 I noticed I was sweating profusely all over my body when in warm rooms. After some research I discovered an undisclosed side effect of the surgery known as Compensatory Sweating (CS), or Reflex Sweating (RS). I now sweat profusely from my back, chest, legs, and buttocks when warm or in stressful situations. Over time my body's ability to regulate its temperature has become compromised, resulting in feeling excessively hot at all times. These are known (but undisclosed to me) side effect of the Sympathectomy procedure, but are also a symptom experienced by some people who have spinal cord injuries (SCIs). It is believed that a sympathectomy causes changes in the spinal cord similar much like a SCI.
I cannot tolerate much above 73°F (22.8°C) before I begin to soak through my clothes. This has become a debilitating condition and my quality of life is extremely low. I can no longer go outside on warm days without soaking through my clothes, and I often cannot tolerate warm rooms indoors at any time of the year.
In an attempt to improve my quality of life I have tried various medications (anticholinergics, alpha-blockers, beta-blockers), antiperspirants, and other unconventional treatments (iontophoresis, diet restrictions, supplements) to limit the profuse sweating and increase my heat tolerance. While some help to a degree, it is not nearly enough of an improvement.
I returned to the surgeon asking about the clamp removal and was shocked when he told me that removing the clamps was unlikely to improve my condition and even had the possibility of making it worse. I decided to have the clamps removed out of desperation, and hope that there is some improvement. It has been only a month since they were removed, and I hear it takes a long time for peripheral nerves to regenerate (if they do), so I must remain optimistic.
I am not suffering from this condition alone; there are online support groups full of thousand of ETS patients who experience similar or worse symptoms than me. I have since learned that the procedure has been banned in its country of origin (Sweden) due to overwhelming patient dissatisfaction, and after public outcry only patients over the age of 20 can have it performed in Taiwan. However, it is still performed in many countries around the world leaving thousands of patients feeling misled and debilitated by the medical professionals they had trusted. Some ETS patients have had nerve grafts and/or stem cell treatments, but the results are usually poor with a few exceptions.
The symptoms we suffer from are very similar to those experienced by people with SCIs, and are likely some form of dysautonomic. I believe some of us may be good candidates for some form of clinical trial, experimental treatment, or new "fringe" treatment. Our "injuries" were incurred precisely by a surgeon (rather than the result of an accident), it is a crush injury (rather than severed), and all information about the surgery is available (including exact date and time, and various other metrics).
In recent years there has been a lot of progress with electric stimulation of peripheral nerves and the spinal cord. Electric stimulation has been shown to speed recovery of injured nerves, as well as restore their function. A few individuals have even regained use of their limbs years after their injury. Along with electric stimulation, there are advances in stem cell treatments. While I understand stem cell treatments are highly controversial, and in many cases unproven for certain conditions, there are still occasionally positive results for some individuals. There are even other possible treatments using light, chemicals, or Bio 3D printing to repair nerves
If you are able to provide any information about potential treatments it would be much appreciated. Many people, myself included, are left in a debilitating state and are desperate for help.
Thank you for your time."
Submitted by Gonzolo C. from Santiago, Chile | Date: March 31, 2019
"I had ETS (T2-T3) in 2003, when I was only 19 years old, and this is when my nightmare started. My life before ETS was so damn good, but unfortunately, I didn't realize it till after the surgery.
The first things I remember was that almost Immediately after ETS my hair got severely thinned, dry, with an ill aspect, lost its volume and texture, becoming impossible to style, same with my facial hair, that became thin and diffuse. This basically ruined and changed my physical appearance, to the point that I was no longer attractive to the girls as I used to be. I use rogaine on my scalp and face, which only helps intermittently to some degree, but in some periods of the month I have to go clean shaved to look more decent. At the same time, my skin felt very irritated and my scalp itchy and full of dandruff.
Now I'm facing a terrible, very unusal and serious condition to the point of being disabled: Painful dermatological reactions in the anhidrosis area (scalp, face, neck and chest), which consist in chromic and severe eczema and seborrheic dermatitis (and cystic acne too). Now, the thing is that this goes far beyond normal and It's not a classic dermatitis that an individual with a healthy nervous system would experience, the problem is really serious. This condition is also induced (severely) by exercise, drinking alcohol or medications of any type. If I exercise (whether cardiovascular or weight lifting), the dermatitis will explode very aggressively some hours later (and a cystic acne days later) all over my anhidrotic skin, it is a very extensive area, really hard to describe how painful it is, and the itching and irritation is totally out of control, it goes from one place to another and replicates very fast, it's insane and can last 15 hours per day or some times the whole day. The problem comes from the deep inside, it's not something that simply generates in the surface of the skin. I have to apply steroids and other anti inflammatory creams in the worst parts along with some other treatments, but there's nothing to stop this reactions. I had to stop doing exercise permanently many years ago, which is of course not normal, exercise is supposed to be a healthy thing for everyone but not for me any more!, it's very sad considering that I was a athlete my whole life before this surgery. I had to stop drinking alcohol completely, because it triggers this reactions too and whenever I get ill it's a real nightmare, cause I have to avoid medications, everything I takes causes me allergic reactions, cystic acne or the painful dermatitis flare up in the anhidrosis areas.
Still, after so many years, the problem keeps negatively evolving to this days, it got out of control and it also started to happen after going for a slight walk through the street (20 minutes walk for example). I got to the point of becoming disabled by the side effects, now I can't even go for a walk because if I do, then I later have to endure many hours of the worst torture and hell that you could imagine, as this all happens hours later in a form of delayed effect and the problem comes much worse. I can't even sleep because of the dermatitis, the pain and itchiness, I spend the whole night scratching my skin. No doctor in my country can understand this condition, they are all impressed but can't help me. I've been studies by many dermatologists, I've had all kind of tests done and there's nothing else that could explain this condition. My current dermatologist says that he has only seen this severe dermatitis in patients with neurologic problems, such as Parkinson, and that in my case , ETS was equal to a neurological disorder and that unfortunately there's nothing to do except to try a reconnection of the nerves. So basically I can't move, every physical effort will cause the problem to badly explode hours later. I feel I must be the only person in the world going through this specific medical mystery induced by ETS. I can't tell you in words how much I'm suffering, if there is a hell, I'm living it right now. I am subjected to a terrific physical and psychological torture, without exaggerating.
Everything affects me negatively and severely in the denervated skin areas and the triggers are very unusual. I'm in constant pain in my skin.
Of course I have the classic severe compensatory sweating, which everybody already knows, so, there's no point to go deeper into this subject.
I had a complete loss of energy after ETS and I always feel tired and sleepy, in a lethargic state. Along with some other side effects.
ETS basically has destroyed my whole life and affected me to a deep level that you wouldn't imagine, it's hard to describe. I can't tell you how I miss my old healthy body, and I how regret this decision every single day of my life.
I'm now facing a tragedy that I never imagined, not even in my worse nightmares. I can't function anymore, my life has been stopped for 16 years and I'm just surviving for the hope of an improvement through reversal surgery. "