Sorry to hear about your experience. Similarly, in my experience, people just trust the judgement of the doctors, who are the ones making money on sympathectomies, of course. What do you mean the surgery for both sides =1.2 million?
I spend days with less than two hours up from a laying down position. The fatigue is overwhelming. Some people get sympathectomies performed as early as age 14.
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.
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.
I also made a podcast episode on the topic. I will DM you to get in touch.
What did the ticket prices finalize at?
Sorry to hear about your experience. Similarly, in my experience, people just trust the judgement of the doctors, who are the ones making money on sympathectomies, of course. What do you mean the surgery for both sides =1.2 million?
I spend days with less than two hours up from a laying down position. The fatigue is overwhelming. Some people get sympathectomies performed as early as age 14.
Is there a specific cutoff day to determine if a post has enough karma to be featured in the newsletter?
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.
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.