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  • Hi...

    I think it's really important to remember that these are public forums. It's entirely possible that a doctor could see comments that were attributed to them. I don't think anyone's privacy is being invaded, once they've posted something on an internet forum. Whenever I post something that involves another individual, I try to think about what that person would think if they read the post. Would they think that I was accurately conveying what they told me?

    If there are specialists who are telling their patients that certain treatments work, but there is no published literature to back it up, don't we want to get a dialog going to get the details? If someone said that their specialist was recommending Raindrop Therapy, should that go unchallenged? You know what happens if it goes unchallenged? It gets picked up as fact and reported as such. (We've seen that here a lot lately.)

    If I wanted to convince people that what I was stating was fact, I wouldn't be afraid to attribute the facts to prove my point. And, I don't see anything wrong with someone discussing the issue with a person to whom statements were attributed, to get their perspective. Don't we all want the same thing... good, reliable information?

    You may not believe me, but I would really love to find out that an alternative treatment was successful. Having gone through scoliosis surgery, I would never want anyone to have to go through it if there was a viable alternative. So, I'm often the first person to talk about people like Elise Browning Miller and Martha Hawes, or that alternative treatments can often reduce a person's pain. I am a lot less anti-alternative than people think. I just happen to think it's very important that claims be backed up by science. And, telling people that some unknown individual is stating that something is "working," doesn't further the cause.

    --Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

    Comment


    • Originally posted by mamamax View Post
      Just to clarify the situation in the other thread - this happened to a brand new member SLS (not MissEmmyF) the day after her joining. She has not returned since.

      Reference:
      127/128/129/130/136 Clear Institute vs Schroth Method
      http://www.scoliosis.org/forum/showt...?t=8632&page=9
      She was last active yesterday (05/21), and you're trying to make it sound like she's been run out of town. Please stop the hyperbole, it does no one any good. People come here for information, not to witness petty bickering or 'gotcha' sessions.

      This forum is for sharing information and support, lets keep it that way.
      Surgeries July 26th & August 3rd 1983 (12 years old)
      Still have 57 degree curve
      2 Harrington rods
      Luque method used
      Dr David Bradford
      Twin Cities Scoliosis Center
      Preop xray (with brace on)
      Postop xray

      Comment


      • Originally posted by LindaRacine View Post
        Hi...

        I think it's really important to remember that these are public forums. It's entirely possible that a doctor could see comments that were attributed to them. I don't think anyone's privacy is being invaded, once they've posted something on an internet forum. Whenever I post something that involves another individual, I try to think about what that person would think if they read the post. Would they think that I was accurately conveying what they told me?

        If there are specialists who are telling their patients that certain treatments work, but there is no published literature to back it up, don't we want to get a dialog going to get the details? If someone said that their specialist was recommending Raindrop Therapy, should that go unchallenged? You know what happens if it goes unchallenged? It gets picked up as fact and reported as such. (We've seen that here a lot lately.)

        If I wanted to convince people that what I was stating was fact, I wouldn't be afraid to attribute the facts to prove my point. And, I don't see anything wrong with someone discussing the issue with a person to whom statements were attributed, to get their perspective. Don't we all want the same thing... good, reliable information?
        Absolutely agree.

        It is hard for lay people to fully understand some comments made by professionals. It is very important to be as clear as possible.

        For example, I have been very careful to not say our surgeon says my fused daughter is "cured." I say she is cured because the surgeon said she is back in the general population on all future back issues. I don't see a distinction between that and being "cured." My daughter does not have to do anything special to protect her back or discs or whatever over and above what an unfused person would do.

        But it may not be in our surgeon's mind. Yet some here might think I said he said my daughter was cured. We have to always read very carefully.

        Last, I would bet my house some things attributed to surgeons on this forum were misunderstandings. So Linda is correct in her comments about challenging questionable statements attributed to surgeons. Surgeons don't want people misrepresenting their comments and if experienced people like Linda can help vet those reported comments, I'm sure they would be grateful. I cringe at the thought of some of those guys reading what they supposedly said.
        Last edited by Pooka1; 05-23-2009, 09:30 AM.
        Sharon, mother of identical twin girls with scoliosis

        No island of sanity.

        Question: What do you call alternative medicine that works?
        Answer: Medicine


        "We are all African."

        Comment


        • Originally posted by mamamax View Post
          Here’s the thing (well a few things) …

          #1 I’ve made some great pals here (and been learning quite a lot about non surgical treatments for scoliosis) – some I correspond with off forum .. it is for them, myself, and others that I stay.

          #2 Not everyone doubts me. Those who doubt me now – always will, regardless of what I say or do - regarding those, no I have no great concern in convincing them to change their minds (they are as entitled to their own opinions as i am mine).

          #3 I’ve previously posted information about my doctor/brace provider (openly without being asked for the information). The result of that was like I said above (posts 133 – 137 & 139), some interesting phone calls to my providers office (by the doubters). Some of those calls were disruptive to those who manage the office – and a poor representation of most members here.

          #4 Many choose not to publicly post their personal information (including the public listing of their orthopedic specialists’ names) – I have come to learn the value of that – and now belong to that camp.

          #5 Linda indicated she wanted me to post my specialist’s name so that she could have a conversation with him regarding a reference he and I discussed in the course of my treatment. I suggested that if she feels the need to discuss the value of said reference with an orthopedic scoliosis specialist – that she consult her own. He may agree – he may not (not all specialists agree).

          #6 My orthopedic specialist does not need to receive phone calls from Linda regarding the value of a reference he and I discussed in the course of my treatment (nor do i desire/require her as someone included in my personal treatment program by way of her communication with my doctor).

          #7 My specialist's name does not need to be published here providing opportunity for repeat performance of item #3 above.

          #8 I have no need of the name of Linda’s specialist and her posting it, does not change the way I view our relationship.

          So – that’s about all there is to that.

          If anyone wants or feels they need more details than this – just PM me and I’ll be glad to reply.

          The issue at hand is items number #3 and #5.

          Linda made it clear that she would contact my doctor, without my permission, about a conversation he and i had in the course of my treatment. I think there is a law against that - anybody know what it is?

          In addition another member in another thread has been told by a moderator, that her doctor has been contacted in response to comments shared in their doctor/patient relationship (without permission). Said member has not returned since then. That is a fact.

          These are serious things.

          Comment


          • Look, if someone can prevent a surgeon from being misrepresented then that is well within the role of a moderator. We don't want misquotes from surgeons on here if we want folks to get good information.

            I think some surgeons would cringe at some things they supposedly "said" as reported here. They would be glad of Linda's efforts. These guys are not idiots as some think they are.
            Sharon, mother of identical twin girls with scoliosis

            No island of sanity.

            Question: What do you call alternative medicine that works?
            Answer: Medicine


            "We are all African."

            Comment


            • Doctor/Patient Confidentiality

              Originally posted by mamamax View Post
              The issue at hand is items number #3 and #5.

              Linda made it clear that she would contact my doctor, without my permission, about a conversation he and i had in the course of my treatment. I think there is a law against that - anybody know what it is?

              In addition another member in another thread has been told by a moderator, that her doctor has been contacted in response to comments shared in their doctor/patient relationship (without permission). Said member has not returned since then. That is a fact.

              These are serious things.

              And yet another member (Post #149) indicates this may have happened also in the past.

              These are serious things.

              Doctor/Patient conversations in the course of treatment are confidential. If said patient wishes to share such with others that is fine. However - contacting a person's physician to discuss their confidential treatment (and their conversations in the course of treatment are considered part of treatment) .. without permission - is not ok. In fact, there are laws against it.

              Comment


              • Originally posted by mamamax View Post
                Doctor/Patient conversations in the course of treatment are confidential. If said patient wishes to share such with others that is fine. However - contacting a person's physician to discuss their confidential treatment (and their conversations in the course of treatment are considered part of treatment) .. without permission - is not ok. In fact, there are laws against it.
                Nobody contacted anyone to find out about confidential aspects of anyone's treatment. That characterization is reckless.

                If you think surgeons wouldn't be grateful to have folks point out statements that they never made but were attributed to them then you can't be helped.

                You must think they are idiots.
                Sharon, mother of identical twin girls with scoliosis

                No island of sanity.

                Question: What do you call alternative medicine that works?
                Answer: Medicine


                "We are all African."

                Comment


                • Originally posted by Pooka1 View Post
                  Look, if someone can prevent a surgeon from being misrepresented then that is well within the role of a moderator. We don't want misquotes from surgeons on here if we want folks to get good information.

                  I think some surgeons would cringe at some things they supposedly "said" as reported here. They would be glad of Linda's efforts. These guys are not idiots as some think they are.
                  Mamamax said her surgeon thinks the Weiss article provides good material for patient/surgeon discussion.

                  The 254 citations given in this article cover all the risk factors that remain today - and provide some answers to what some may experience from older surgeries ... the information remains good material for patient/surgeon discussion - My orthopedic specialist also says it is an excellent article in this regard.
                  That falls FAR short of a statement that warrants ANYONE from contacting the surgeon to be sure he is not being misrepresented.

                  Period.

                  Mamamax was further goaded into providing her doctors name with the implication that he wasnt a specialist if his name wasnt revealed. She would be OUT OF HER MIND to reveal the name of her doctor.

                  Comment


                  • Doctor/Patient Confidentiality

                    Pooka - I do not think surgeons are idiots - that is truly the grandest reckless assumption on your part.

                    The Issue is Doctor/Patient Confidentiality


                    Doctor/Patient conversations in the course of treatment are confidential. If said patient wishes to share such with others that is fine. However - contacting a person's physician to discuss their confidential treatment (and their conversations in the course of treatment are considered part of treatment) .. without permission - is not ok. In fact, there are laws against it.

                    My orthopedic specialist does not need to receive phone calls from Linda regarding the value of a reference he and I discussed in the course of my treatment (nor do i desire/require her as someone included in my personal treatment program by way of her communication with my doctor.

                    Obviously you have not had this happen to you - or you, like those of us who have - would feel the same way.

                    You're ignoring this - does not make it go away.

                    Last edited by mamamax; 05-23-2009, 11:21 AM.

                    Comment


                    • The Weiss article has been discussed. I have a hard time believing the surgeon said those things in those words meaning what was claimed.

                      But I don't know that.
                      Sharon, mother of identical twin girls with scoliosis

                      No island of sanity.

                      Question: What do you call alternative medicine that works?
                      Answer: Medicine


                      "We are all African."

                      Comment


                      • Yes, but just because the paper has serious faults, does not mean that it is not a good place to start a dialogue.

                        Comment


                        • Mamamax, if someone misquoted you on a public forum, wouldn't you be grateful to have that corrected?

                          Now there is the issue of how far a person should go to correct misinformation.

                          If you know the surgeon personally, it is not out of line to ask if they said that if the surgeon was named and quoted. That's what friends do for friends. If the person wasn't named then there is the risk that they will remain misquoted. If you don't personally know the surgeon, I think it's over the line to call to verify the quote.

                          I don't care enough to call anyone's surgeon but I might bring the comment up with our surgeon and ask if could possibly have been uttered by a surgeon. For example, I did that when someone's kid came out of surgery with no physical restrictions. From that exchange, I learned that in fact 95% of kids need no physical restrictions to avoid pseudoarthrosis but most surgeons restrict activities because they don't know who the 5% are who do need the restrictions to avoid pseudoarthroses. The surgeons who don't restrict are playing the odds.
                          Sharon, mother of identical twin girls with scoliosis

                          No island of sanity.

                          Question: What do you call alternative medicine that works?
                          Answer: Medicine


                          "We are all African."

                          Comment


                          • Originally posted by concerned dad View Post
                            Yes, but just because the paper has serious faults, does not mean that it is not a good place to start a dialogue.
                            Exactly CD - that was the point, which i made quite clear.

                            Thank you.

                            Comment


                            • Pooka - I'm not going to address the off-topic topics at this point because - they are verging away from the topic.

                              And the topic (which you continue to ignore) is:

                              Doctor/Patient Confidentiality

                              Comment


                              • Originally posted by concerned dad View Post
                                Yes, but just because the paper has serious faults, does not mean that it is not a good place to start a dialogue.
                                It might be a place to start certain dialogues like the quality of certain journals. But I disagree that it is a good starting pint for folks investigating surgery now.
                                Sharon, mother of identical twin girls with scoliosis

                                No island of sanity.

                                Question: What do you call alternative medicine that works?
                                Answer: Medicine


                                "We are all African."

                                Comment

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