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ray |
All i have to say! | #21 | ||
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All i have to say is that if you don't have any side effects then you should be very grateful and pray everyday that you stay that way. I didn't start
noticing some of the effects for 3 years, some of them are gradual. Anyone that considers ETS after hearing these stories is just not too bright, at least
most of us including me were unaware of the thermoregulatory problems and other side effects. I don't remember any mention of any of this shit, only how
HAPPY people were that their hands didn't sweat.
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rubberducky |
#22 | |||
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Guys - I am certainly not the arbiter of justice on this board, but I think that we (people on both sides) should keep petty insults and personal attacks down
to a minimum. While we all have the right (and reason) to be skeptical about the intentions of new members (and the possibility that they may, indeed, be
recruiters) I think that we have learned from other cases that have happened recently that we can be too hasty in our judgments and accusations.
The fact of the matter is, some people do see positive results -- or at least, they find the surgery's cost-benefit ratio to warrant labeling the surgery as a success.I wouldn't be comfortable writing off the experience as an entirely positive one, however, until about the seven to eight year mark -- this is when people really start to fall apart, with the side effects incrementally building up and taking their toll on the patient year after year. But that is just my suggestion, based on my experience and the experiences of member that I have met over the course of years on this board. That said, Cheshire Cat, thank you for your response. Again, I would like to reaffirm that I am happy for you and your situation. I disagree with your platform that ETS shouldn't be banned, simply because about 30 percent of the patient population have reported negative results and dissatisfaction -- which is medically and statistically significant. |
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Archangel31 |
#23 | |||
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Chesire cat, I welcome you the board. Your results might have been positive but any real research on ets has shown the major side effects. If any of the
percentage's are close to 30 percent this surgery should be banned. Dr.Goldstein is the only person to do extensive studies on post ets patients. His
studies have shown autonomic dysfunction, thermoregulation dysfunction. Should this surgery be allowed to go on when there is a possiblity of two vital
system's in a person's body being thrown off???
I think my favorite ducky summed it up best when it come's to the childish tantrum's being thrown about. Let's keep these discussion's civil. I'm sure there are favorable outcomes with ets. The bottom line even with these outcome's is that you're destroying a vital part of the nervous system. I hope you stay well cat and keep in good health. |
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Erika |
#24 | |||
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To me, it makes sense to have fewer horrible side effects if you only have T3 clamped, versus T2, T3 and T4 cut (oh no) like I did. The surgery was never
properly explained to me. Did I do enough research? Nope. I fell for my surgeons anecdotes about his individual patients and how he turned their lives
around. I knew he was the chief of cardiothoracic surgery so I trusted him. Even if patients don't suffer the devastating effects, this surgery is
unhealthy. At the time of my operation, I was not aware of the functions of the upper thoracic nerves in maintaining normal heart/lung functions...including
iontropy--the strength of the heart beat. I personally suffer neurologically (Horner's and left chest to left elbow numbness), as well as have heart/lung
dysfunction. Horrific lack of energy now too. I don't know if it's worse/better to clamp T2, T3 or T4, but I can only imagine that the more nerves
cut, the more damage.
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ugyan |
#25 | |||
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I think Jinn you might have meant CheshireCat and not Chickpea. Otherwise I do not understand your post and the barrage of insults. Not even clear why your
were enraged. By the look of it it might have had something to do with someone mentioning your name LAST. I hope I just misunderstood the whole thing...
Still: these kinds of posts will alienate anyone who might come to this site to look for information. It undermines the intentions - and credibility - as much as any cunning plot by any recruiter. It undermines all the hard wrok you have done! Actually it might make any recruiter look really cool... (wheter CH.C. is one is not relevant now). I fully get your rage, (closely resembles mine) but I wish your REASONING would be a bit less loaded with swear words and more loaded with well... reasoning. Mia
Last Edited By: ugyan 06/24/09 04:05 PM.
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csmess |
#26 | |||
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First, I'd like to second ducky's call for civility. Please, everyone, stop the personal attacks.
Second, I'd like to clarify my first message and perhaps provide an explanation for the reaction you received here. The issue I attempted to highlight has nothing to do with tv advertising or differing ways health care is metered out around the world. I was simply highlighting the fact that 99+% of the websites on the internet present the surgery with a highly redacted list of side effects, dubious statistics and a dishonest accounting of how it affects the body. It's true today, it was true five years ago and it was true ten years ago when I was researching the surgery. It's not a recent phenomena. Therefore, there's virtually no chance that someone researching this surgery on the internet would find only negative information and a high probability they may find only positive promotional material that is deceptive. Given that many studies have shown that 15% - 30% regret the surgery due to severe side effects, one can only conclude that the downsides of the surgery are horribly under represented on internet. Invariably, when someone posts a happy outcome on this forum they say the felt compelled to do so because they feared if they didn't, prospective ETS patients would only hear "one side of the story". They claim they post their story to offer some "balance". Yet it is quite clear that that fear is entirely unwarranted given the facts I've outlined above. Even if this forum had 100% negative stories, it would not properly "balance" the overwhelming number of promotional websites with glowing testimonials. Furthermore, patients with happy outcomes have many ways of spreading the joy that are unavailable to those with unhappy outcomes.. Surgeons routinely collect testimonials and phone numbers from their happiest patients and use them to recruit new patients. Patients with bad outcomes are marginalized and swept under the rug. The only way we can be heard is through forums like this one. This is it. This is all we've got and we're up against millions of dollars in advertising money. So, I guess I'm saying perhaps you should not be too surprised by the response here. You came to a forum dedicated to (and paid for by) folks who were lied to and then marginalized by their physicians. We are justifiably angry and not particularly interested in hearing the "upside" of the surgery. We've already heard the "upside" -- exclusively -- on the internet and in our pre-op consultations -- which is why we got the surgery in the first place. Personally, I consider presenting "both sides of the story" through competing testimonials a waste of time and dangerous. There are people who are happy with the outcome and those whose lives have been badly damaged by the surgery. Done. Testimonials lead to emotional decisions, not rational ones. All medical ethical societies oppose the use of testimonials because they are unscientific and don't provide the prospective patient a clear and complete understanding of the risks. It's far more important that prospective patients be given an exhaustive list of the side effects and a description of how those side effects can negatively affect quality of life and health. Further, they deserve to know the the true odds of contracting those side effects as elucidated by objective research. Finally, I'd like to say that the biggest issue has not been addressed here. That is, there would be no need for this forum, no need for your happy testimonial or my unhappy one if the physicians offering this surgery provided full and honest disclosure. It is a crime that you, I or anyone else should have to rely on internet searches and forums to get all the facts regarding a destructive nerve surgery. Hopefully, that will give you a different perspective on this debate.
Last Edited By: csmess 06/24/09 04:44 PM.
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WetBoy |
#27 | |||
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Yeah, Chickpea rules I think it was just a misdirected comment. Jinn, were you drinking a few cocktails? Smoking a little? I'm right there with you bro,
it's the only way to get through this shit. It's all good, and we love you man... What else can I say that hasn't been said already. This surgery
works for some (though we may not want to believe that) and others it just ruins their life. I have a whole new outlook on death.... I'm ready for it. I
don't care if it comes tomorrow in fact I welcome it. This in spite of all I still have going for me. This is what ETS did for me, and it took about 8
years to finally show all of it's true colors. ETS is like a devil lurking in the corners of time... At least that's what it was for me. I got a few
"trade off" years out of it and now my body is fucked, completely fucked, but you know what I still play drums in a band if you can believe that one.
I still go to concerts and live life even though it's totally uncomfortable most of the time. I guess I've learned to live with this fucked up body.
Lately my piece of mind comes from knowing that someday I will die and never have to worry about any of this shit ever again. There's your cure... Now run
out and have ETS... Spin the barrel and see if a bullet gets lodged in your head. Sometimes I feel like someone has a voodoo doll in my image and they are
poking at it, burning it, torturing it, etc. This is my happy ETS story/life...
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NLajoie |
#28 | |||
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Well I apologize for my profanities. As a person who has recieved a very negative impact, it's not easy to read when someone comes up and says it's a
good surgery or that's it's acceptable. My whole point is that when you look at what the results have been and what it affects in the body, it
shouldn't be tolerated. What I've noticed is that a lot of the medical profession views this as a positive procedure. I don't think they have a
proper knowledge of what really happens. Yesterday I had an appointment for a strained pectoral muscle, and they asked me about the surgery, since my injury
is around the area. The doctor kept telling me how good the surgery was and implicating to me that I must be very pleased. It was pissing me off, but I guess
they just need more insight into it. Even said to me " It's better than having sweaty hands when you have to shake people's hand." Anyways,
I had to tell a little about it and what my experience has been with it, but they weren't taking the negative comments I had about it well.. they had
other patients waiting.. So, I told the doctor we'll get more into it later. I'll tell them more whenever I'm back there. But there seriously
has to be more truthful knowledge spread out there, so others don't have to go through what some of us have had to.
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csmess |
#29 | |||
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NLajoie,
I don't think they have a proper knowledge of what really happens. It's their job to know what really happens. If they don't, they are derelict in their ethical duties as physicians. I encourage you to be very blunt with the doctors you speak with. Don't let them try and ease the consciences by trying to convince you of something that's not true. Don't let them words into your mouth. If he says "it's better than sweaty palms, right?", you say "hell no! it's way worse! in ways you never told me about!" If given the opportunity, you should tell them that you did not give informed consent for the surgery because your doctors failed provide complete and honest disclosure of the risks. That a plain and simple fact and you should feel confident in making that statement. Of course, they won't like it. They will deny it. They will attempt to cover their asses if they had a hand in convincing you to have the surgery. And, more than likely, they will talk down to you and possibly claim that they were completely forthcoming. If they do that, stick to your guns. You know more about the effects of this surgery than any surgeon performing it. They only know what they've read and how it makes 'em a bunch of money. They have not lived with the effects of sympathetic denervation and you have. If they imply the situation is otherwise, call them on it.
Last Edited By: csmess 06/24/09 06:19 PM.
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Chickpea |
#30 | |||
...there would be no need for this forum, no need for your happy testimonial or my unhappy one if the physicians offering this surgery provided full and honest disclosure. It is a crime that you, I or anyone else should have to rely on internet searches and forums to get all the facts regarding a destructive nerve surgery.Well said. Just for the record....I have sent Jin a PM and I have no harsh words for him. I dunno what happened there but I can only guess he misread or misunderstood my post. Jin dude - I have nothing against you, no hard feelings man. I've been known to take stuff the wrong way and react too. It happens. No worries. I do hope you re-read my post. I do stand by my words that it's not cool to come here and tell people to "look at the upside of the surgery". I don't think it can fairly be said that I was 'attacking' Cheshire cat in any way, I think I was pretty reasonable and polite. Perhaps I was a little blunt but I felt it was necessary to making my point. I was just trying to convey the realities of ETS side effects, based on my reading and communication with people who live wirth the side effects. Cheshire cat - I too am happy that you have your health and I hope when you get back from your trip that we'll hear more from you. Sincerely. If I came across as harsh to you in any way, it's only 'cause I was feeling protective, and I also felt that you arent quite grasping the horror of what ETS can do. It can be a hard thing to get your head around when you've had a happy outcome from the surgery, for sure, I know I've gone through several changes of opinion on ETS in the six months that I've known the truth, the other side of the story (I went 8 years knowing nothing about what the surgery does to some). So.....all I ask is that you try to stand in the shoes of those who did not get a good result from the surgery. One person's happy result does not negate the reality of another person's catastrophic result. Kind thoughts to all. Chickpea |
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jinnjucz110 |
#31 | |||
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very sorry chicpea,.. it was ment for cheshirecat i will fix it! i got confused!.. onces again very very sorry!.. was NOT directed at you at all.... THANKS
JIN!
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Chickpea |
#32 | |||
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I just hope you and Cheshire cat can come to an understanding. Sincerely, I'm not taking the p**s. You guys can't be hating on each other when you've never met! And I don't believe that you really want her to get side effects....come on man, you're better than that and you know it. I hope you guys can talk it out somehow later on.
Last Edited By: Chickpea 06/24/09 09:57 PM.
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miketrismegisto |
#33 | |||
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Somedays i think im kidnapped two ets surgeons and each one have to perform ets in each other at t2, 3, 4 and more and then send this 2 to a tropical
paradise island ( very far for civilization ) with a weather for more than 40 grades centigrades, also the island is full with canibals, and the only food
that they have to eat are plants of cacao ( that is use to make chocolates ) so lets see when they have to run for her lifes if they can feels ok with
shortbreathness and heart dont pumped like before preets.
Thanks
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slovenec |
T2 / T3 / T4 | #34 | ||
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Before and after ETS I studied most medical articles dealing with sympathectomies. It seems that the last experimental results show the following:
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csmess |
#35 | |||
Before and after ETS I studied most medical articles dealing with sympathectomies. It seems that the last experimental results show the following: I have also done extensive research and none of the claims above have been verified in objective studies. There are no objective experimental data on the effect of sympathectomy at various levels because no objective studies have been performed. These methods have only been assessed in methodologically flawed, non-randomized, subjective, short-term patients surveys adminstered and authored by individuals with a direct financial conflict of interest. Therefore, these so-called studies cannot be considered scientific, reliable or accurate. It is not surprising given the poor quality of the research that many of these subjective-survey-based studies are often contradictory in their results. As such, anyone considering this surgery should not be led to believe they can lower the probability of severe side effects by electing to have the surgery performed at a particular location. there is no way to avoid compensatory sweating - that's why patients should be carefully selected (only the ones with severe and disabling palmar HH) and warned about possible side effects (CS may be disabling if you are living in country with longer periods of hot and humid weather) It is true that there is no way to avoid CS, however, few surgeons offering the surgery tell patients that. Instead they claim it occurs in some precentage of cases. There is no established objective diagnositic criteria for what constitutes "severe and disabling palmar HH". Until such objective criteria is established, doctors are free to base their assesment solely on the patient's opinion of the severity of the conditon. Furthermore, there is no objective evidence that the severity or location of the original HH plays a role in the severity of the post-operative side effects. These myths about the level of surgery or pre-existing conditions having an effect of the outcome must be stopped until credible scientific evidence has been published to establish their validity.
Last Edited By: csmess 09/05/09 12:51 PM.
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ugyan |
#36 | |||
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You could have not studied the literature before your ETS 12 years ago, because there was not much literature available. (If your surgery went accordign to
plan and outcome as expected, what are you doing here 12 years later?!)
What do you mean by 'experimental studies'???? Your information can not be substantiated by any study. I strongly believe that you came here to advertise your (Tarfusser's) services and promote ETS. I hope your posts will be seen as such by the moderators and dealt with accordingly. I see someone like you coming here to post as a good sign. It means that business is down...and that you guys are getting desperate. Times are changing, and I am optimistic. |
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Erika |
#37 | |||
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slovenec |
#38 | |||
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You are completely wrong. My neurologist in Slovenia brought me many articles considering sympathectomy before 1997 (I knew about Kux's results and the
results of open sympathectomies intended to treat Reynaud's syndrome and problems with periferial circulation) and I had many examinations before the ETS
(although I admit they were of no use). I work at the university and I've been having the access to the journals for all this time.
And what am I doing here after 12 years? I've been considering additional lumbar sympathectomy and I must admit that I am terribly afraid of it. That's why I joined the forum and tried to find some new information. At the same time I wanted to share my experience. I only tried to help and I was missinterpreted. I haven't communicated with dr. Tarfusser for more than 11 years - he helped me with the temporary thermourticaria following the surgery. I don't think that such an aggressive response and accusations were neccessary. |
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ugyan |
#39 | |||
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1. If you were reading the medical journals (which one?) for 13 years, you must have read the articles investigating the effects of sympathectomy (not by the ETS surgeons). 2. Any Neurologist (esp. the one who does not offer ETS) will tell you about the dangers and consequences of sympathectomy, and not just supply 'advertising material'. There is no way a Neurologist would encourage Lumbar, let alone Cervico-Thoracic Sympathectomy together with Lumbar. And if you are considering such surgery, you have not read enough in your 13 years of study on the subject, which after your success with your ETS, I find truly....strange. You certainly speak positively and encouragingly about the results of Lumbar Sympathectomy and make some strong statements about how safe they are. So if you are scared, why state that the lumbar Sympathectomy is safe? And why would you youself hesitate? 3. It is sad that the 13 years of study of the professional literature, and with a keen and helpful neurologist at hand, you have to come to a forum such as this to look for information. 4. Tarfusser certainly said something to you which is very far from what you can find on his website about CS! His website was last updated in 1997, by the way. 5. Thermal urticaria after surgery? I am intrigued. 6. I also do not buy your story because your English is impeccable. Ljublana? I am not convinced. 7. You did more for advertising ETS than 'sharing' your story, and I trust my instinct fully on that. Also your repeated reference and summaries from the 'scientific' literature and candid comments would indicate strongly that you are involved with ETS yourself. Just the phrases you use and how you use them are familiar from the ETS surgeons... 8. Because of this, I think the response was appropriate. I have no tolerance for people who try to get business from some desperate people who might read into it some 'ray of hope'. Becuase they do not have the necessary background knowledge/reading from the literature, they might take it seriously. You might say that Tarfusser is a really cool guy, but the fact is that he sells a surgery that is incredibly destructive and damaging. He does this without axknwledging the consequences of cutting the sym. chain and without informing the patients - at least not on his website, so people who read about ETS from his iste have already a skewed view of what hte surgery is. I do not believe for a second that you are a genuine ex-ETS patient. I believe that coming here and posting what you did was an intent to ensure the continuing interest in ETS surgeries and procure business. I find it extremely predatory. While you sound 'nice', the message you are sending out is not. |
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csmess |
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slovenec,
No, I am correct. If you are going to make those claims, please provide links to any and all objective research articles that substantiate the claims you have made. If you don't have links, please provide the author, name of the article and the name of the journal. I have access to all the medical journals as well and will be able to obtain a copy. Allow me to repeat myself so that I am clear. All of the evidence published supporting the claims above are from short-term, uncontrolled, subjective surveys. The research provides no objective or quantitative measurements or observations of pre-existing conditions or side effects. The results are nothing more the subjective ratings of satisfaction and a couple of pre-selected side effects taken typically less than 12 months after surgery. As such, they are about as scientific as a typical internet opinion poll. Furthermore, for every subjective satisfaction survey you reference indicating that, say, T3 causes fewer side effects than T2, I will show you one where T2 provided superior results. Neither article would prove anything other than that the quality of the research is extremely poor. To be even more clear, let me explain what objective scientific research (at the very minimum) would entail:
If you can direct me to research comparing sympathectomy at various levels that meets the criteria above and demonstrates the superiority of one location over another, I will happily concede that I am wrong. Until real research proves that a particular method superior to another, individuals considering the surgery should not be led to believe one option is less risky than another. |
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