I'm posting here for the first time to raise awareness of an issue that has caused me considerable pain over the past five years, and has plagued many other people as well. I, as well as thousands of people around the world, have had surgeries called Endoscopic Thoracic Sympathectomy (ETS), and Endoscopic Lumbar Sympathectomy (ELS), that clamp or sever a series of nerves along the Sympathetic chain, which controls the fight or flight response, among many other things -and thus sever off chunks of the receiving patients' nervous systems. They have caused me and many others severe and debilitating changes, to consciousness and cognition. I feel the members of this forum are especially qualified to understand the contents of this post.

My apologies if this topic does not fit the purpose of the forum. It's just that I have tried for over 5 years to raise awareness without much luck, and know the people on this forum are smart enough to understand quite well the consequences of surgically messing with the nervous system.  I have managed to speak with some high profile people in EA/Rationality communities, and discussed writing a formal paper describing my experiences that they were prepared to disseminate widely. However, not much ever came of it because of my loss of cognitive capacity and coherence, 

I myself have had both ETS and ELS performed, which have totally destroyed my life and caused me torture and suffering beyond description (relevant because members of this forum desire to reduce extreme suffering), modified my consciousness and mental states so much that my internal mind doesn't seem to function or interact with the world coherently (which might be relevant to many people's intellectual interests such as consciousness).  I am 27 years old, and have basically spent close to a decade such that I have only gotten out of bed for 6 hours a day. (referring to the mode, not the mean)

One horrible period after ELS surgery was a period of approximately 2-3 years of continuous suffering, without a single moment of coherence or relief. A period of time took place when the thoughts that arose in my brain weren’t even fully coherent, as the machine that is my nervous system had so many parameters of computation removed, that the machine couldn’t function in its ideal state. My lumbar sympathectomy modified my consciousness and mental states so much that my internal mind doesn't seem to function or interact with the world coherently. As a result of the surgery, I now have lower “Moral Weight”, and lower capacity for conscious experiences. I also have great changes to the nature and type of my qualia.

Here is the Wikipedia page for ETS, which provides valuable information and is a good start. https://en.wikipedia.org/wiki/Endoscopic_thoracic_sympathectomy . This was one of the few sources of information I could find that described how Sympathectomies affect consciousness. Sympathectomies are banned in Sweden and partially banned in Taiwan, because they recognize the deleterious effects outweigh the possible benefits of reduced sweating for those suffering from excessive sweating. Yet in many countries, such as the United States, the surgeries are less regulated and still performed. Many of the doctors are performing the surgeries despite knowing of their great harms, downplaying the serious negative consequences and ignoring the complaints of many of their patients (including removing negative reviews and comments about their practices from social media), due to financial motivations, and possibly other motivations regarding status.There is a Facebook page of now over 2500 members, the vast majority of whom have suffered as a result of sympathectomies: https://www.facebook.com/groups/334039357095989

Dr. Tommy Nai-Jen Chang, an Assistant Professor in the Division of Reconstructive Microsurgery, Department of Plastic and Reconstructive Microsurgery, Chang-Gung Memorial Hospital, Linkou Medical Center, Taiwan, works on peripheral nerve reconstruction for adult and pediatric brachial plexus injury, facial paralysis, and reconstruction of upper and lower extremity defects. Dr. Chang also performs peripheral nerve reconstruction to try to reverse ETS and ELS.  Dr. Chang has, in his work, identified 89 side effects from ELS and ETS.

 

 

Side effects that I have suffered from my Sympathectomy surgeries, namely my Lumbar Sympathectomy (ELS) include but are probably not limited to:

  • Near-complete loss of capacity for all forms of pleasure and satisfaction, all states of mind above hedonic zero. Examples include sexual pleasure, pleasure from intellectual pursuit, satisfaction from reading a book or learning something new, significant but not complete loss of pleasure from food and drink, ability to love, loss of emotional ability to laugh, loss of capacity for pleasures of friendship, and much more. All capacities for preferable states of mind have been reduced to negligible levels.
  • Loss of capacity for many types of suffering, such as emotional suffering, loss of capacity for emotional state of crying, fear, hatred, anger, heartbreak, and frustration - which I think is part of why I feel my capacity to fight back and accomplish goals towards raising awareness towards the surgery have been severely compromised
  • Loss of fight or flight response
  • Chronic fatigue - To this day, my chronic fatigue is so bad that, on days that I go to work, I only spend about nine and a half hours a day out of bed in a 24-hour period. On days that I don't work, it's only about four hours spent out of bed. Those data points were documented probably 6 months or so before this forum post.
  • Difficulties in speech and difficulties putting sentences together and having conversation
  • Weight gain and disruptions to my digestive system - At one point I could smell my internal organs failing and it was a period that my digestive system was so out of whack that I could only defecate on a frequency of about once every two or three weeks.
  • Decreased ability to create new memories, and destruction of memories from the past
  • Loss of reproductive system capabilities (male) - erectile dysfunction, loss of ability to find a woman attractive, loss of sexual arousal, etc.
  • Greatly decreased intelligence - slower processing speed, lesser capacity for thought experiment, increased forgetfulness, etc.
  • Greatly decreased capacity to appreciate music
  • Lower states of consciousness - I feel less awake
  • A state of being that is a lot less dense. I also feel less “awake” and my mind has a lot less depth to it.
  • Problems with urination
  • Decrease in capacity for fear
  • Inability to process information properly and coherently
  • Fog in my eyeball region
  • Loss of hobbies
  • Distortions in my perception of time
  • Compensatory sweating - sweating in other parts of my body, particularly my back - which now has decreased quite a bit
  • Muscle pain, primarily in back, but not sure how much is caused by surgery
  • Loss of feelings of alertness
  • Changes in my personality - In some sense I feel like I completely lost a personality and I have no personality nowadays after the surgery
  • Problems with thermoregulation and overheating - There was one time I had to call an ambulance for myself just while out walking because I was so overheated and my heart was beating so heavily
  • Greatly decreased capacity to perform and/or complete tasks
  • Muscular tightness in my face region and forehead region
  • Loss of ability to get goosebumps on arms
  • Possible, but not proven, changes to my heart rate and blood pressure
  • Possibly responsible for hair loss, as many other patients have also reported, but of course can’t prove causality,  and am not sure how much, if any, hair loss has been caused by a sympathectomy
  • Many other effects, that have been documented in various audio files, video files, and text documents, that anyone may request to see. I made a 17-minute video a few months ago, which documented some things regarding my ELS surgery, which any of you can access upon request, and I may post it here if people are interested.

I went through two to three years of extreme brain fog, where hardly a minute that went by that I didn't think about my ELS surgery.  Even now, over five years later I spend a  majority of my days in head discomfort and pain, never floating above hedonic zero. I often go to sleep in discomfort, and wake up in discomfort, and still don't feel I can simply exist in fully coherent mental states, as is taken for granted by most people. My default state of being nowadays is uncomfortable, without a single second of internal comfort.

Would people be interested in me posting some more text files, audio files and/or videos? I think some things will be found interesting both to those who are interested in consciousness/qualia and to those who wish to reduce extreme suffering.

Thanks for reading.

22

New Comment
4 comments, sorted by Click to highlight new comments since: Today at 8:59 PM

This sounds terrible! Especially considering that this operation is used to treat problems that are seemingly relatively mild: (wiki)

ETS is used to treat excessive sweating in certain parts of the body (focal hyperhidrosis), facial blushing, Raynaud's disease and reflex sympathetic dystrophy.

Also, note

In 2003, ETS was banned in its birthplace, Sweden, due to inherent risks, and complaints by disabled patients. In 2004, Taiwanese health authorities banned the procedure on people under 20 years of age.[38]

However, I've also searched online a bit, and this process seemed to be endorsed in the literature (say, here, or more recently here) for people with excessive sweating. Not sure what to make of it except one of

  1. excessive sweating is a much worse  condition than I realized
  2. the papers seem to address the number of people whose condition and overall quality of life was improved, but maybe they don't take into account the severity of the harms from this operation's potential side effects. 
  3. maybe there are other methodological issues with the studies
  4. maybe the operation is safe and beneficial when conducted in particular way but more risky otherwise
  5.  

Thank you for being interested enough to research the subject!


Yes, ETS has been banned in Sweden. I am part of a growing body of people who are trying to get Sympathectomies banned elsewhere, with not much success in drawing attention of medical authorities.

Thank you for the links! You provided content that I believe I  have not found before, despite extensive search.  One thing I will note is that the first link you presented only focuses on compensatory sweating as a side effect. I myself listed it as a side effect in my above post, but it is so minor in comparison with the other negative effects.  I understand how a large percentage of patients can report positive results, if the only things being compared are the compensatory sweating with the original sweating. All other effects, such as chronic fatigue, are not presented to many patients pre-surgery, and some patients thus fail to relate negative side effects with the surgery itself.  The doctors who performed my surgery, for example, have only ever acknowledged compensatory sweating as a side effect, but ignore all of my other complaints, which are so many orders of magnitude worse. 

Also, both of the studies you cite do not include Endoscopic Lumbar Sympathectomy, which is a less-commonly performed surgery, and cuts nerves in the lumbar region, instead of the thoracic region. The surgery in the lumbar region is what caused some of my severe side effects such as impotence, loss of sexual pleasure, and disruptions to my digestive system, all of which presumably would not be prevalent in thoracic surgery.

Regarding your list of potential options for why some studies indicate Sympathectomies as being successful: I agree that it is somewhat puzzling, and I don't claim to have a perfect answer. I will say a few things, however. I know for a fact that Dr. Rafael Reisfeld, who is a prolific Sympathectomy surgeon, and is also quite prolific in publishing, has been publishing false or at least misleading results. Also, some studies performed that indicate negative results, such as those conducted by Dr. Goldstein of the NIH, are hard or impossible to locate on the web. There are also several doctors on the Facebook group who acknowledge that Sympathectomies leave many patients worse off. One doctor even is in the process of creating a Youtube documentary.

I would like to address your second option in the list: "the papers seem to address the number of people whose condition and overall quality of life was improved, but maybe they don't take into account the severity of the harms from this operation's potential side effects." I think this may be true, that the people who were negatively affected don't get properly weighted, as some effects are so horrible that they would outweigh many positive self-reported results. There is also the case of a woman who bled to death after surgery in Sweden. This case probably was not given proper weight nor the case of the young man who took his own life shortly after surgery, and whose story was reported by his mother to the ETS Facebook group. There are forum posts going back considerable time that tell similar tales, and many Youtube videos made by people to document their extremely negative results. I also think it is possible that the studies only had compensatory sweating in mind, and didn't take into account other effects of messing with the nervous system, such as changes to emotional processing and changes to cognition and qualia? The wiki page for ETS also notes a loss of capacity for pleasure, which is a negative side effect that some patients may not have realized took place, but would nonetheless be bad.

You also mention "maybe the operation is safe and beneficial when conducted in particular way but more risky otherwise." I think some ways of performing Sympathectomies may be less risky than others, as there are different nerves that are cut by different doctors, for example. But I do not think that any method of severing anatomically functional nerves from a human nervous system could be considered safe, especially when the sympathetic nervous system controls so many functions, and acts in coordination with the parasympathetic nervous system.

Thanks for responding to my post, and I hope we can continue to correspond! Maybe you can even help me raise awareness. I also have other potential goals with this project; one may include an attempt at reversal with a doctor in Taiwan, who has started nerve grafting in response to the many patients who are dissatisfied with their Sympathectomies.

Oh my, I didn't realize how bad things ended up as. I hope you have a good rest of your life.

Unfortunately, I really can't have a good rest of life, on my current trajectory. My default state of consciousness is now one of discomfort, and I don't have any time of relief. I do appreciate your kind wishes however. One thing I am trying to do is raise awareness, as not many people know of Sympathectomies and their harms.