Guest guest Posted August 31, 2007 Report Share Posted August 31, 2007 , I stumbled upon the affiliate of ScoliosisisNutty. They are UK based, so I don't know how I hooked up with them. I read and posted once or twice, but felt a little odd after reading a post from the group leader that struck me as weird. She went on about a procedure that I had had--facet denervation--saying that it would cause paralysis and she'd end up with a colostomy bag if she went through with it. She said she'd rather walk with a cane and take her meds. Of course, we all have to decide what's best for us, but her info was so out there. Anyway, they are here at . Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2007 Report Share Posted August 31, 2007 Maybe you would be enlightened to know that this person who owns the scoliosis nutty website actually has a forum on . I think it is also under the scoliosis nutty name. > > > Hi, All -- > > Someone sent me the following link: > > http://www.scoliosisnutty.com/page.php?pg=214 > <http://www.scoliosisnutty.com/page.php?pg=214> > > I went to the page. I found it extremely disturbing. Check it out. > > And while you're checking it out, please bear in mind that Andy Stanton > obtained some very interesting stats from Joe O'Brien, a spokesman for > the Scoliosis Research Society: Up to one million people have undergone > spinal fusions for scoliosis which included implantation of the now > wholly discredited and defunct Harrington rod instrumentation -- and > every single one of those individuals is expected to need revision > surgery. > > [Note: Revision surgery, as we all know, is Quite A Big Deal -- > considerably more massive and grueling than any first-time fusion for > scoliosis per se. In fact, the name is probably somewhat misleading. > " Revision surgery " evokes something reasoned, straightforward, > possibly even mild or innocuous. But let's not forget that the original > medical term -- abandoned early on, for obvious reasons! -- was the > more accurate " salvage surgery. " ] > > In other words: The Harrington rod, as the SRS itself has ultimately had > to concede, was a colossally dangerous and damaging device which > essentially crippled an entire generation of girls and women (a few men, > too) with severe progressive scoliosis. It did not merely prove > ineffective or limited in value for treating the original deformity: It > created a whole new deformity, the (also innocuously named) " flatback > syndrome " -- which has brought unspeakable pain and suffering, > disability, debility, life-disruption, even despair ,to untold numbers > of people. > > Now for my remarks about the Web page referenced above: > > There is no apparent attribution -- no source given for the > information -- but it looks like standard Harrington PR from way > back when. > > I looked around the site a little bit. Whoever created this site -- > again, this information is ostensibly unavailable -- seems to have > pulled together a whole bunch of different writings, including > Mina's helpful articles (which, at least, are attributed to > Mina). So by surfing around the site, you may eventually piece together > the inference that the Harrington promo is -- well, perhaps a tad > outdated, to say the least? But it is troubling that all this stuff is > basically thrown together with no context, no guiding editorial hand-- > and no name of anyone willing to take credit for the enterprise. > > This is the kind of thing that disheartens me about the free-for-all > that the Internet seems to have become. Someone should be able to do > something about this kind of website, but I can not see what. Since it > is not a forum or a wiki, it can not be debated or confronted openly for > the benefit of the entire readership. > > In fact, the site is almost a case study in how NOT to function > responsibly online -- how to mislead or confuse any vulnerable people > who are still coming to grips > with flatback syndrome and are hungry for accurate information. You > just gather up all the writing you can find from from other people, > throw it together with no care to avoid copyright infringement, and make > sure to include dangerously inaccurate junk without any attached > warning. And you do all this anonymously, while making sure to drum > up some revenue from Google ads in the process. (On that side-issue, > does Google police its ads at all? Something tells me you could > peddle Harrington rods via Google with impunity.) > > As someone else commented to me regarding the Harrington puff piece: > " It's as if you posted, without comment or discussion, a big, bold > statement to the effect that all pregnant women would do well to drink > lots of alcohol throughout their pregnancies. " " > > Yes, I am devoutly in favor of freedom of expression. Still, there > is something very wrong here . . . > > Just my two cents, folks. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2007 Report Share Posted September 2, 2007 Thanks so much for the additional information, Jill. I think it is good that we are policing this kind of thing. What if you had been a newcomer to all this, just in the process of deciding whether to have facet denervation? I did a little more research myself after posting about the Nutty site. I saw that the person had a group as well, apparently moderated by her- or himself and by someone called . There's so much misinformation and weird opinion-mongering in the scoliosis field already -- all we need is more of it! (Not.) Best, > > , > I stumbled upon the affiliate of ScoliosisisNutty. They are UK based, so I don't know > how I hooked up with them. I read and posted once or twice, but felt a little odd after > reading a post from the group leader that struck me as weird. She went on about a > procedure that I had had--facet denervation--saying that it would cause paralysis and she'd > end up with a colostomy bag if she went through with it. She said she'd rather walk with a > cane and take her meds. Of course, we all have to decide what's best for us, but her info was > so out there. Anyway, they are here at . > Jill > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2007 Report Share Posted September 2, 2007 Thanks so much. I had found this out, too, after posting. I guess this is the downside of -- almost anyone can start a group devoted to almost anything. Best, > > > > > > Hi, All -- > > > > Someone sent me the following link: > > > > http://www.scoliosisnutty.com/page.php?pg=214 > > <http://www.scoliosisnutty.com/page.php?pg=214> > > > > I went to the page. I found it extremely disturbing. Check it out. > > > > And while you're checking it out, please bear in mind that Andy > Stanton > > obtained some very interesting stats from Joe O'Brien, a spokesman > for > > the Scoliosis Research Society: Up to one million people have > undergone > > spinal fusions for scoliosis which included implantation of the now > > wholly discredited and defunct Harrington rod instrumentation -- and > > every single one of those individuals is expected to need revision > > surgery. > > > > [Note: Revision surgery, as we all know, is Quite A Big Deal -- > > considerably more massive and grueling than any first-time fusion > for > > scoliosis per se. In fact, the name is probably somewhat > misleading. > > " Revision surgery " evokes something reasoned, straightforward, > > possibly even mild or innocuous. But let's not forget that the > original > > medical term -- abandoned early on, for obvious reasons! -- was the > > more accurate " salvage surgery. " ] > > > > In other words: The Harrington rod, as the SRS itself has > ultimately had > > to concede, was a colossally dangerous and damaging device which > > essentially crippled an entire generation of girls and women (a few > men, > > too) with severe progressive scoliosis. It did not merely prove > > ineffective or limited in value for treating the original > deformity: It > > created a whole new deformity, the (also innocuously > named) " flatback > > syndrome " -- which has brought unspeakable pain and suffering, > > disability, debility, life-disruption, even despair ,to untold > numbers > > of people. > > > > Now for my remarks about the Web page referenced above: > > > > There is no apparent attribution -- no source given for the > > information -- but it looks like standard Harrington PR from > way > > back when. > > > > I looked around the site a little bit. Whoever created this site - - > > again, this information is ostensibly unavailable -- seems to have > > pulled together a whole bunch of different writings, including > > > Mina's helpful articles (which, at least, are attributed to > > > Mina). So by surfing around the site, you may eventually piece > together > > the inference that the Harrington promo is -- well, perhaps a > tad > > outdated, to say the least? But it is troubling that all this > stuff is > > basically thrown together with no context, no guiding editorial > hand-- > > and no name of anyone willing to take credit for the enterprise. > > > > This is the kind of thing that disheartens me about the free-for- all > > that the Internet seems to have become. Someone should be able to do > > something about this kind of website, but I can not see what. Since > it > > is not a forum or a wiki, it can not be debated or confronted > openly for > > the benefit of the entire readership. > > > > In fact, the site is almost a case study in how NOT to function > > responsibly online -- how to mislead or confuse any vulnerable > people > > who are still coming to grips > > with flatback syndrome and are hungry for accurate information. You > > just gather up all the writing you can find from from other people, > > throw it together with no care to avoid copyright infringement, and > make > > sure to include dangerously inaccurate junk without any attached > > warning. And you do all this anonymously, while making sure to drum > > up some revenue from Google ads in the process. (On that side- issue, > > does Google police its ads at all? Something tells me you could > > peddle Harrington rods via Google with impunity.) > > > > As someone else commented to me regarding the Harrington puff piece: > > " It's as if you posted, without comment or discussion, a big, bold > > statement to the effect that all pregnant women would do well to > drink > > lots of alcohol throughout their pregnancies. " " > > > > Yes, I am devoutly in favor of freedom of expression. Still, there > > is something very wrong here . . . > > > > Just my two cents, folks. > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2007 Report Share Posted September 2, 2007 I think I can understand where you're coming from. For many years, I, too, wanted to justify my decision to undergo Harrington rod surgery at the urging of respected and esteemed scoliosis surgeons. But please understand that just a few years earlier, you would have undergone an uninstrumented fusion -- no rod - - and correction of your scoliosis with external devices such as Risser jackets. And you would still be here, with no damage to your heart or lungs -- and, quie possibly, with no flatback syndrome. I had 20 great years with an uninstrumented fusion. Had some zealous surgeons not wanted to treat my back pain related to that older, " short " fusion by extending the fusion and adding a Harrington rod when I was in my late 30s, I believe I would be in far better shape today. I am not hesitatant to say that the rod was a terrible evil and a horrendous mistake -- at my nadir, I was carrying my torso at a ninety degree angle to the ground, was unable to go anywhere without leaning on a walker, was a hairsbreadth from losing bladder control or worse when I finally got to the first of a series of massive revisions. Yes, the earlier plaster casts were a nightmare, but they did not permanently disable and derail huge numbers of women whose lives will never be the same. The Harrington rod was simply a new and different approach -- one that probably did lead the way to all kinds of better and less damaging internal hardware, particularly the segmental systems used today. But it was an approach which, overall, did vastly more harm than good for hundreds of thousands of people with scoliosis who regret that it was ever used in their bodies. I have heard " beautiful fusion " many times over myself, with respect to various fusions I underwent. I think it may be a custom in the profession to compliment one's colleagues surgical skills to the patient -- despite what shape the patient may be in as a result of the earlier surgery! Best, > > In regard to this article--all I can say is that in 1968 I had a thoracic curve of over 60 degrees. I had Harrington Rod surgery. At the time, that was the best they had and if I had not had that done, I would not be here today. My heart would have been crushed. Yes, I now have lumbar problems, but at least I am here. Every doctor that I have gone to in the last 10 years for my lumbar problems told me how good my thoracic fusion was. " Beautiful " was the word used. > The article was not meant to be taken as has been...I am glad and thankful I was able to have it done. > Horrifying article > > > > Hi, All -- > > Someone sent me the following link: > > http://www.scoliosisnutty.com/page.php?pg=214 > > I went to the page. I found it extremely disturbing. Check it out. > > And while you're checking it out, please bear in mind that Andy Stanton obtained some very interesting stats from Joe O'Brien, a spokesman for the Scoliosis Research Society: Up to one million people have undergone spinal fusions for scoliosis which included implantation of the now wholly discredited and defunct Harrington rod instrumentation -- and every single one of those individuals is expected to need revision surgery. > > [Note: Revision surgery, as we all know, is Quite A Big Deal -- considerably more massive and grueling than any first-time fusion for scoliosis per se. In fact, the name is probably somewhat misleading. " Revision surgery " evokes something reasoned, straightforward, possibly even mild or innocuous. But let's not forget that the original medical term -- abandoned early on, for obvious reasons! -- was the more accurate " salvage surgery. " ] > > In other words: The Harrington rod, as the SRS itself has ultimately had to concede, was a colossally dangerous and damaging device which essentially crippled an entire generation of girls and women (a few men, too) with severe progressive scoliosis. It did not merely prove ineffective or limited in value for treating the original deformity: It created a whole new deformity, the (also innocuously named) " flatback syndrome " -- which has brought unspeakable pain and suffering, disability, debility, life- disruption, even despair ,to untold numbers of people. > > Now for my remarks about the Web page referenced above: > > There is no apparent attribution -- no source given for the > information -- but it looks like standard Harrington PR from way > back when. > > I looked around the site a little bit. Whoever created this site - - > again, this information is ostensibly unavailable -- seems to have > pulled together a whole bunch of different writings, including Mina's helpful articles (which, at least, are attributed to Mina). So by surfing around the site, you may eventually piece together the inference that the Harrington promo is -- well, perhaps a tad outdated, to say the least? But it is troubling that all this stuff is basically thrown together with no context, no guiding editorial hand-- and no name of anyone willing to take credit for the enterprise. > > This is the kind of thing that disheartens me about the free-for- all > that the Internet seems to have become. Someone should be able to do > something about this kind of website, but I can not see what. Since it is not a forum or a wiki, it can not be debated or confronted openly for the benefit of the entire readership. > > In fact, the site is almost a case study in how NOT to function responsibly online -- how to mislead or confuse any vulnerable people who are still coming to grips > with flatback syndrome and are hungry for accurate information. You > just gather up all the writing you can find from from other people, > throw it together with no care to avoid copyright infringement, and make > sure to include dangerously inaccurate junk without any attached > warning. And you do all this anonymously, while making sure to drum > up some revenue from Google ads in the process. (On that side- issue, > does Google police its ads at all? Something tells me you could > peddle Harrington rods via Google with impunity.) > > As someone else commented to me regarding the Harrington puff piece: " It's as if you posted, without comment or discussion, a big, bold statement to the effect that all pregnant women would do well to drink lots of alcohol throughout their pregnancies. " " > > Yes, I am devoutly in favor of freedom of expression. Still, there > is something very wrong here . . . > > Just my two cents, folks. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2007 Report Share Posted September 2, 2007 , I'm the " " that is co-moderating that site. > > > > , > > I stumbled upon the affiliate of ScoliosisisNutty. They are UK > based, so I don't know > > how I hooked up with them. I read and posted once or twice, but felt > a little odd after > > reading a post from the group leader that struck me as weird. She > went on about a > > procedure that I had had--facet denervation--saying that it would > cause paralysis and she'd > > end up with a colostomy bag if she went through with it. She said > she'd rather walk with a > > cane and take her meds. Of course, we all have to decide what's best > for us, but her info was > > so out there. Anyway, they are here at . > > Jill > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2007 Report Share Posted September 2, 2007 Thanks for the vote of confidence, Andy. I just did some minor editing in the Wikpedia entry on the Harrington rod. It needs a major overhaul, but I just don't have time right now in view of some other, unrelated writing deadlines. I wanted to put in that statistic but have not yet figure out how to cite it -- maybe just refer back to the letter you wrote to the Feisty Forum relaying Joe's remarks. Take care. I hope to hear more about life in Denver when you have time. > > Hey , > > I think any intended or unintended misinformation on the website you > cited proves that you really, really need to write your book about the > origins of flatback syndrome! > > I wish I could tell you how to get a hold of Joe O'Brien - I just kept > emailing and snailmailing until I got a response (he called me). > Please keep trying to reach him so you can quote him in your book and > so you can convince publishers that there is an audience for your book. > > FYI - Dr. Boachie is the new, incoming president of SRS. > > Best Wishes to All, > Andy > > > > Hi, All -- > > > > Someone sent me the following link: > > > > http://www.scoliosisnutty.com/page.php?pg=214 > > <http://www.scoliosisnutty.com/page.php?pg=214> > > > > I went to the page. I found it extremely disturbing. Check it out. > > > > And while you're checking it out, please bear in mind that Andy Stanton > > obtained some very interesting stats from Joe O'Brien, a spokesman for > > the Scoliosis Research Society: Up to one million people have undergone > > spinal fusions for scoliosis which included implantation of the now > > wholly discredited and defunct Harrington rod instrumentation -- and > > every single one of those individuals is expected to need revision > > surgery. > > > > [Note: Revision surgery, as we all know, is Quite A Big Deal -- > > considerably more massive and grueling than any first-time fusion for > > scoliosis per se. In fact, the name is probably somewhat misleading. > > " Revision surgery " evokes something reasoned, straightforward, > > possibly even mild or innocuous. But let's not forget that the original > > medical term -- abandoned early on, for obvious reasons! -- was the > > more accurate " salvage surgery. " ] > > > > In other words: The Harrington rod, as the SRS itself has ultimately had > > to concede, was a colossally dangerous and damaging device which > > essentially crippled an entire generation of girls and women (a few men, > > too) with severe progressive scoliosis. It did not merely prove > > ineffective or limited in value for treating the original deformity: It > > created a whole new deformity, the (also innocuously named) " flatback > > syndrome " -- which has brought unspeakable pain and suffering, > > disability, debility, life-disruption, even despair ,to untold numbers > > of people. > > > > Now for my remarks about the Web page referenced above: > > > > There is no apparent attribution -- no source given for the > > information -- but it looks like standard Harrington PR from way > > back when. > > > > I looked around the site a little bit. Whoever created this site - - > > again, this information is ostensibly unavailable -- seems to have > > pulled together a whole bunch of different writings, including > > Mina's helpful articles (which, at least, are attributed to > > Mina). So by surfing around the site, you may eventually piece together > > the inference that the Harrington promo is -- well, perhaps a tad > > outdated, to say the least? But it is troubling that all this stuff is > > basically thrown together with no context, no guiding editorial hand-- > > and no name of anyone willing to take credit for the enterprise. > > > > This is the kind of thing that disheartens me about the free-for- all > > that the Internet seems to have become. Someone should be able to do > > something about this kind of website, but I can not see what. Since it > > is not a forum or a wiki, it can not be debated or confronted openly for > > the benefit of the entire readership. > > > > In fact, the site is almost a case study in how NOT to function > > responsibly online -- how to mislead or confuse any vulnerable people > > who are still coming to grips > > with flatback syndrome and are hungry for accurate information. You > > just gather up all the writing you can find from from other people, > > throw it together with no care to avoid copyright infringement, and make > > sure to include dangerously inaccurate junk without any attached > > warning. And you do all this anonymously, while making sure to drum > > up some revenue from Google ads in the process. (On that side- issue, > > does Google police its ads at all? Something tells me you could > > peddle Harrington rods via Google with impunity.) > > > > As someone else commented to me regarding the Harrington puff piece: > > " It's as if you posted, without comment or discussion, a big, bold > > statement to the effect that all pregnant women would do well to drink > > lots of alcohol throughout their pregnancies. " " > > > > Yes, I am devoutly in favor of freedom of expression. Still, there > > is something very wrong here . . . > > > > Just my two cents, folks. > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2007 Report Share Posted September 2, 2007 My 2 cents? No surgeon in his right mind, in this day and age, would dream of inserting a Harrington rod in anyone's back. So it doesn't really matter what was said or not said--no one's getting one implanted in their spine anymore, thank God! Jill Quote Link to comment Share on other sites More sharing options...
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