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  • #46
    Originally posted by mamamax
    In the course of sharing my experience there have been some who disagree with my shared thoughts.
    I doubt anyone minds you sharing yours THOUGHTS and OPINIONS.

    What people mind are presenting those things as FACTS and EVIDENCE as you have been trying to do.

    Everyone is entitled to their own opinions; They are NOT entitled to their own facts.

    You continue to struggle with this fairly simple concept.

    I wish you luck.
    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


    • #47
      ..........
      Last edited by mamamax; 04-17-2009, 09:38 PM.

      Comment


      • #48
        Originally posted by mamamax View Post
        This is the NSF Non-Surgical Bracing Forum.
        Yes exactly.

        It is not the:

        NSF Pseudoscience Forum

        nor the

        NSF Wishful thinking Forum

        nor the

        NSF Quacky Forum

        nor the

        NSF Misleading desperate innocents Forum

        nor the

        NSF Flat Earth Society.
        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


        • #49
          ..........
          Last edited by mamamax; 04-17-2009, 09:38 PM.

          Comment


          • #50
            ..........
            Last edited by mamamax; 04-17-2009, 09:38 PM.

            Comment


            • #51
              Originally posted by mamamax View Post
              I would be curious to know if you actually checked any of the references out before dismissing them and am even more curious as to why you completely ignored two references that show there can be correction made to the adult spine without surgery (i.e, Dr. Martha Hawes, which proves the adult female spine can be improved significantly without surgery - scientifically documented and referred to by the medical and surgical community world wide http://www.psychosomaticmedicine.org.../full/63/6/994
              and the studies provided at http://www.scoliosissystems.com/adult.html
              Did you bother to research and read any of those?
              I never, ever, regardless of what, trust a source that directly benefits from the 'positive' results. If the author has anything to gain from the 'positive' outcomes, I will be skeptical. That is no different than people treating MDs with pharmaceutical ties with skepticism. I don't see where the studies are provided on the scoliosis system's webpage. The references listed, their titles doesn't seem to relate to spinecor bracing at all. The written material on the adult scoliosis reads as summery of facts on spine followed by a theory.

              I want to see objective data and external review of the said data coming from many patient studies, not just a handful or a subjective study.

              A handful positive results is no different from someone saying "Hey, my aunt Linda's cancer was cured by Acai berries! It'll cure your cancer!. Um, no thanks, give me doxorubicin. Efficacy on a few or a ton?

              Youtube is a direct reflection of the Internet - there is both good and bad information there. My brace provider has posted testimonials there (did you even look at one?) - real people telling of their Spinecor experience: [url]http://www.scoliosissystems.com/adult.html[/url
              The problem I have with YouTube is it's lack of regulation on content. There's a reason tried and true peer-review journals take months to publish articles.... reviews. Granted, nowdays with those open source journals, authors can publish faster, but even those aren't free for all, everyone publish!

              As for Susan Dunn's son Jay - yes he was young and male ... operative word - ADULT (capitalized for emphasis - not shouting). Wonder what he would think of dismissal of his seeming miracle. Probably nothing as he's fit and feeling well.
              You aren't getting it. Like I said, males can grow well into their 20s, by that alone, their body is not fully mature. So therefore, a result seen by a young adult male cannot translate into older adults. As it is, in the medical community people can be considered 'pediatric' up until the age 25.. just check out some age limits of pediatric drug trials there are a number of them that cut off at 25. I'm not sure how you took 'he still could have been growing' as an insult to him or dismissing his article.

              Maybe it is worth mentioning here that the current vice president and CEO of the National Scoliosis Foundation (which sponsors/provides this forum) has three children using the Spinecor brace. He has been quoted as saying that the brace - "does what it is supposed to do". http://www.spinecorbrace.biz/
              So what? you are talking about the spinecor working on adults, none of us here are arguing it's effect on children.

              Use of the Spinecor brace in adults is only five years old, it will be years until enough data is gathered, categorized, scientifically analyzed, etc, and published, so yes, the numbers are few and my access as a lay person is limited. When it comes to references - perhaps people only see what they wish to see. If i apply such lofty wisdom to myself - i cannot dismiss these - but then my perspective is this: i am an adult scoliosis patient who is not electing surgery at this time, in need of help - and these things look good to me ... furthermore, my experience is proving valid to me.
              That's fine, if you are helped by it good for you. But what you are not getting is the big picture. You can't paddle to others what has not been fully proven yet. Your personal experience alone is not valid to the group. Sorry, it just isn't. There'd be so many medical advances in all areas of medicine if what worked on one person worked for all.

              Think about this, do you want to be responsible for someone wasting their good hard earned money and time? Or the window of opportunity of surgery?

              If you are so emotionally distressed, you shouldn't visit the board. No one is making you share your success. You are allowed to be selfish... no need to go out and make the world a better place.
              30 something y.o.

              2003 - T45, L???
              2005 - T50, L31
              bunch of measurements between...

              2011 - T60, L32
              2013 - T68, L?

              Posterior Fusion Sept 2014 -- T3 - L3
              Post - op curve ~35


              Comment


              • #52
                ..........
                Last edited by mamamax; 04-17-2009, 09:39 PM.

                Comment


                • #53
                  Originally posted by mamamax View Post
                  Guess what - you've been figured out

                  To the surgical patients on a mission:

                  Please go to the Surgical threads - and just leave this forum alone.

                  This is not the place for you.

                  Admit it - and leave
                  One of my baby kids is in a brace. Does that mean I can stay?

                  The other had surgery that cured her. Does that mean I have to now leave?
                  Last edited by Pooka1; 04-16-2009, 09:35 PM.
                  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


                  • #54
                    Week one spinecor brace update

                    ..........
                    Last edited by mamamax; 04-17-2009, 09:39 PM.

                    Comment


                    • #55
                      Originally posted by hope404 View Post
                      Linda Racine...found the link interesting as to why bracing in adults doesn't work
                      just ran and got my daughters xrays.(paranoid)

                      the shape of her vertebrae are normal and unchanged..though I'll admit on the inner part of the curve the disc is squeezed almost to where it is bone on bone...ah..could explain her pain.

                      So I assume these endplate changes must occur in older more severe cases ???? Then it makes total sense as to why bracing would not possibly cause a permanent change in an adult.

                      So Maxene, go check your xrays.?????

                      Now a million dollar question, can bone heal itself and go back to its original shape once the stress is removed???
                      Hi Hope...

                      I think most of our long cassette scoliosis xrays are taken from too far away to really be able to see the details clearly. If you ask your daughter's specialist, s/he can probably show you some examples. I always assumed the wedging gets worse with age, but I don't know that for certain.

                      Regards,
                      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


                      • #56
                        Originally posted by mamamax View Post
                        Are you a medical professional Linda - noticed this web page is of your own creation - and also did not see the reference for the information given, can you provide it? Thanks.
                        No, I am not a medical professional.

                        If you have a traditional medical scoliosis specialist (in other words, not a chiropractor), I'm sure you can verify the wedge issue with them. Anyone who has ever viewed a scoliotic spine during surgery can verify it.

                        Here are some references:

                        http://www.scoliosisjournal.com/content/3/1/11
                        http://books.google.com/books?id=Fke...um=2#PPA107,M1
                        http://www.springerlink.com/content/h22856423475172h/
                        http://www.google.com/url?sa=t&sourc...Bc7J756b11yYsw

                        Let me know if you need more.

                        --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


                        • #57
                          Originally posted by mamamax View Post
                          I'll leave my mailbox open for communication if you wish - however, i also reserve the right to ban you from there if you cannot be polite.
                          I'm laughing at this because I reopened my mailbox, and YOU are STILL PM'ing me ... I'm not reading or answering anything I see from you.

                          STOP writing me.

                          I won't block you (YET) because I think there's probably some fairly nasty venom building there from you ...
                          Fusion is NOT the end of the world.
                          AIDS Walk Houston 2008 5K @ 33 days post op!


                          41, dx'd JIS & Boston braced @ 10
                          Pre-op ±53°, Post-op < 20°
                          Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


                          VIEW MY X-RAYS
                          EMAIL ME

                          Comment


                          • #58
                            Originally posted by mamamax View Post

                            In the course of sharing my experience there have been some who disagree with my shared thoughts. The manner in which that disagreement has been shared is somewhat distressing and i wonder how much negativity i should allow myself to be surrounded by in the course of my chosen treatment. Was looking through the entire postings this evening and find that there is good reason for my weariness this night. I have been accused of being just another new member (terrified of surgery) seeking treatment that will not work and sharing that experience amongst a scientific community that is certain my treatment choice is faulty, and of being angry (when i was not). Even though evidence exists that the adult spine may (in some cases) be significantly corrected without surgery - i have been told over and over again, that this is an impossibility (and in not such a polite way i may add). It has been explained to me that such things have been said to me in order to protect others from making mistakes in treatment (implying that i am making a mistake in mine, and further endangering others). It has been suggested that i am touting just another alternative that will not work. I have been asked for reference on a topic and had them dismissed without consideration - even though said references are worthy of consideration. One member wished to engage in heated debate and wondered why i started a thread if debate was not what i was seeking. Said member went on to accuse me of dishonesty, being non-credible, called me a shill, .. a suck up. I've been laughed at. I'm sure there are some other things i've left out - its been an emotionally exhausting week - that's the best i can say about that. I wonder if i should continue to allow myself to be surrounded by such negativity in the course of my treatment option. As i prepare to post the promised one week update in this brace - the mob mentality continues to roll in supporting those who have stated the mentioned things. I find it interesting that the very people accusing me of endangering others are in fact doing and saying things that could in fact endanger another human being - i shudder to think how someone with less strength than myself may react to such behavior. I do not think i have come across a crueler group of people. The forum experience has been difficult enough that i have asked for NSF moderator review and comment.
                            This is definitely the place for non-surgical discussions. If I saw someone pushing surgery over and over again, I would delete their posts. That doesn't mean that we, as a community, are going to allow non-proved treatments to go unchallenged. It's everyone's responsibility to try to help out those who might be taken in by the latest unproved cure.

                            I'm truly glad that you feel the Spinecor brace is helping you. I personally think it has merit for helping out in terms of pain, but I don't believe it will permanently reduce your curves. When you've been out of the brace for 6 months, and maintained any correction you get, I promise to be the person who gets the word out to the rest of the world. (This is assuming that your curves are structural, and not functional.)

                            --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


                            • #59
                              Originally posted by concerned dad View Post
                              I don’t think Maxene is a shill/plant, I think she is someone excited about the results she is seeing and wants to share the news with others. At the same time, and please don’t take offence Maxene, it sounds a bit like you “drank the cool aid”.
                              I think Maxene's transition from confused lay person to militant advocate after FOUR days of bracing smacks of plant. Maybe I'm just less open-minded or less gullible...
                              Fusion is NOT the end of the world.
                              AIDS Walk Houston 2008 5K @ 33 days post op!


                              41, dx'd JIS & Boston braced @ 10
                              Pre-op ±53°, Post-op < 20°
                              Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


                              VIEW MY X-RAYS
                              EMAIL ME

                              Comment


                              • #60
                                Originally posted by mamamax View Post
                                Guess what - you've been figured out

                                To the surgical patients on a mission:

                                Please go to the Surgical threads - and just leave this forum alone.

                                This is not the place for you.

                                Admit it - and leave

                                Many Spinecor members have been driven away by you - you should be ashamed.

                                Of course you are not - you are not that intelligent.

                                Those of you with issues with me and my treatment option - DO NOT BELONG HERE


                                To whom are you speaking, mamamax? You'll have to be more clear ... many people have disagreed with you ...

                                Pam
                                Fusion is NOT the end of the world.
                                AIDS Walk Houston 2008 5K @ 33 days post op!


                                41, dx'd JIS & Boston braced @ 10
                                Pre-op ±53°, Post-op < 20°
                                Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


                                VIEW MY X-RAYS
                                EMAIL ME

                                Comment

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