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  • Originally posted by Joe O'Brien View Post
    This Forum is not intended, nor capable enough, to diagnose and dictate to anyone what method they should or should not use. Hopefully, through thoughtful sharing of personal experience and honest respectful discussion of the facts and circumstances a peer to peer exhange can be an important resource.
    Joe,

    When your ties to Spinecor were revealed here, I naturally questioned it (and I don't feel I was disrespectful). In response, you targeted me by locking that thread and linking to it in your first post in this thread with the lead in "false and misleading remarks were inappropriately made against me. ClickHere!. "

    How can you support your stated belief this forum shouldn't dictate patient choices for treatment when you specifically - and vocally - support two options ... Spinecor and Schroth?

    Maybe I'm stupid, but I don't understand how you could possibly remain unbiased as you do interviews/YouTube videos to push Spinecor, and a large section of the NSF homepage lists Schroth practitioners (and there is NO proof Schroth works, no matter how long it's been around).

    Joe, are you aware most SRS surgeons won't even prescribe Spinecor?
    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


    • txmarinemom

      [QUOTE=txmarinemom;77652]Points I've made all along, NMFB. This thread was started by Joe in the first place because I asked questions about alliances and hawking certain treatments; I think it's a disservice.


      Please re-read post # 1. I started this thread because someone's comment was taken out of context and used to make false and misleading insuations against me. This is a disservice.

      I also started this thread so that people on this forum could read my views about SpineCor etc, directly from me and not through the interpretation of someone else.

      Your statement about "alliances and hawking certain treatments" is unfounded. This is a disservice.
      Best Regards,

      JOB

      Comment


      • Microswine!! xD

        Good coining Pooka
        45L/40T
        Surgery 25/1/2010
        Australia

        Knowthyself

        Scoliosis Corrected 25/1/2010 by Dr Angus Gray, Prince of Wales Private Hospital, Sydney. Fused T3-L4.

        Comment


        • Originally posted by Jimbo View Post
          Microswine!! xD

          Good coining Pooka
          Hey, that's what they are.

          Little packets of love, perfect for cuddling.
          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


          • [QUOTE=Joe O'Brien;78495]
            Originally posted by txmarinemom View Post
            Points I've made all along, NMFB. This thread was started by Joe in the first place because I asked questions about alliances and hawking certain treatments; I think it's a disservice.


            Please re-read post # 1. I started this thread because someone's comment was taken out of context and used to make false and misleading insuations against me. This is a disservice.

            I also started this thread so that people on this forum could read my views about SpineCor etc, directly from me and not through the interpretation of someone else.

            Your statement about "alliances and hawking certain treatments" is unfounded. This is a disservice.
            Joe,

            No disrespect intended here so please don't interpret it that way, I'm just going to state some facts.

            It is difficult for me to agree with your statement that Pam's claim that you hawk certain treatment methods is unfounded and a disservice. Here's why -

            I have several e-mails that went back and forth between you and I (and others involved with putting together the VBS support site) where I asked you to provide a link to the VBS site here on NSF - and you initially said that you would do so provided that Dr. Betz (pioneer of VBS) endorsed the website.

            I then was copied on an e-mail from him (or his PA on his behalf - I can't recall) stating that Dr. Betz did fully endorse the VBS website and in fact he and his PA helped provide us with information as we were building the site.

            Still there was no link here on NSF to the VBS site.

            When I brought this to your attention, you then asked that we provide a reciprocal link to the NSF site on our (VBS) site. We did this (but have now removed it because after many months and subsequent e-mail(s) to you again requesting that you add a link to the VBS site here, you did not do so.)

            But yet as Pam pointed out there are links to groups that support and provide information on other treatments methods that I can only assume you support.

            Because of the facts stated above it is difficult for me to believe you when you say there's no bias or alliances involved.

            Regards,
            Last edited by mariaf; 06-11-2009, 01:48 PM.
            mariaf305@yahoo.com
            Mom to David, age 17, braced June 2000 to March 2004
            Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

            https://www.facebook.com/groups/ScoliosisTethering/

            http://pediatricspinefoundation.org/

            Comment


            • Originally posted by Joe O'Brien View Post
              Dear NMFB,

              I have been travelling and tied up with other programs so I am not up to date on the postings in this thread. However, I welcome the opportunity to speak with you to learn more about who you are, and clarify my role and perspective. Please call me at 781-341-6333 if you would like to talk.

              I have never considered myself a physician and have always fully disclosed that I am a patient who has been dedicated for thirty plus years to learning as much as possible to help my family and fellow patients. I have been blessed in this regard to be able to come to know and work with many of the top scientists, clinicians and surgeons dedicated to scoliosis throughout the world.

              The primary mission of the National Scoliosis Foundation is the early detection and treatment of spinal deformities in order to minimize the effect they may have on children and families. Our daily service is to give Help & Hope to patients and families, and to educate, encourage and empower them to make the important healthcare decisions they will face in their journey. The combination of our mission and service encompasses every topic from genetic screening to the most recent surgical techniques.

              Since before the time of Hippocrates there have been numerous methods to treat spinal deformities. None of these methods are foolproof or gauranteed. That includes Schroth, SpineCor, Stapling, and Spinal Fusion just to mention the most discussed items here. On the otherhand, each one of these methods have there purpose and role and may be appropriate and effective for a given patient. This Forum is not intended, nor capable enough, to diagnose and dictate to anyone what method they should or should not use. Hopefully, through thoughtful sharing of personal experience and honest respectful discussion of the facts and circumstances a peer to peer exhange can be an important resource.
              Hi Joe ~

              Good to see you. I think most in forum understand the things you have said and hold a deep respect both for you as a man and the work that you do on behalf of those who have scoliosis (and their families). I've always found you to be very approachable as well, and while i've not picked up the phone to call you - i certainly feel as if i could.

              The papers you write (as well as your collaborative work with those mentioned), are always a joy to find, highly informative and respected world wide for their honesty and truth.

              I can't imagine what it would be like without NSF and the work that you do. You do us great service and your place in history serves to fulfill a much needed change towards the gathering of trusted information and its dissemination. You and your work - a blessing to us, our families, and the scientific community. Thank you.

              Comment


              • Hi Joe,

                I just want to say "hello" and it was a pleasure to meet you a couple of weeks ago when you were in Novi, MI, with Beth & Rhonda at my daughters orthopedic's office. Having you there was a pleasant surprise.

                Thank you for all you do!

                Comment


                • [QUOTE=mariaf;78528]
                  Originally posted by Joe O'Brien View Post

                  Joe,

                  No disrespect intended here so please don't interpret it that way, I'm just going to state some facts.

                  It is difficult for me to agree with your statement that Pam's claim that you hawk certain treatment methods is unfounded and a disservice. Here's why -

                  I have several e-mails that went back and forth between you and I (and others involved with putting together the VBS support site) where I asked you to provide a link to the VBS site here on NSF - and you initially said that you would do so provided that Dr. Betz (pioneer of VBS) endorsed the website.

                  I then was copied on an e-mail from him (or his PA on his behalf - I can't recall) stating that Dr. Betz did fully endorse the VBS website and in fact he and his PA helped provide us with information as we were building the site.

                  Still there was no link here on NSF to the VBS site.

                  When I brought this to your attention, you then asked that we provide a reciprocal link to the NSF site on our (VBS) site. We did this (but have now removed it because after many months and subsequent e-mail(s) to you again requesting that you add a link to the VBS site here, you did not do so.)

                  But yet as Pam pointed out there are links to groups that support and provide information on other treatments methods that I can only assume you support.

                  Because of the facts stated above it is difficult for me to believe you when you say there's no bias or alliances involved.

                  Regards,
                  Hi Mariaf,

                  In the spirit of stating fact, the following is my actual email response in August 2008 regarding this issue;

                  In response to your email I would like to assure you that both the vertebral stapling procedure and the vertabalstapling.com website have indeed been highlighted on our website for quite some time.

                  First of all, Dr. Betz is one of our Medical Advisors and someone who we highly respect and have worked with for many years (see attached). Contrary to the impression in the email you received, I have been well aware of his vertebral stapling procedure for quite some time. In fact, we are one of the first organizations to advise the scoliosis community about his new procedure in our Spinal Connection newsletter in 2003, which is available in the Medical Update section of our website at Vertebral Stapling

                  We publish, print and distribute this newsletter free of charge to 30,000 people. We also published an article on the Shriners Hospital, and we have personally advised thousands of patients via phone and email about the hospital and the procedure. As a follow up however we would be more than happy to do another Medical Update article with Dr. Betz to highlight the changes during the past five years.

                  With regard to the vertebralstapling.com link, as you can see in the following examples there is, and has been, a significant exposure on our website. So much so, that there has been a little concern at times that some of the posts may be perceived as somewhat more advertising/recruiting oriented than educational.

                  1. Maria has been an active member of our Forum since 2004 with 696 posts as of this email. As you can see in the attached copy of her most recent post in the Adolescent section of our Forum, the link to their website and the procedure is prominently displayed in her signature.

                  2. Amanda is also a member since 2006 and has 112 posts. As you can see in her signature, and in her posts back in February 2008 and September 2007, there is an open link and direct invitation to their website and their Forum.

                  3. In total our Forum has 8 different topical threads specifically titled “Vertebral Stapling” that reflect 295 posts which have been viewed 20,000 times. These numbers do not include the volume of posts on this topic in other threads throughout our Forum.

                  4. The attached Google search on Vertebral Stapling lists our website as the second reference.

                  We welcome the participation of members such as Maria & Amanda sharing their experiences and to date we have been very open and accommodating to them and others using our site as a feeder for their specific areas of interest. Our scoliosis.org website receives 3 million visits per year, and our Forum has 12,000 registered members with a searchable database by topic. “Vertebral Stapling” receives quite a large amount of exposure on our website, and any patient visiting us has a high probability of learning about this alternative to bracing. In addition, it appears highly likely that our website, Forum, and referrals have strongly contributed towards the exponential growth you mentioned for the vertebralstapling.com website. On the other hand, we would welcome a link on the VBS website to our website. I visited the site, but could not find a link. Is there one?

                  Yes, I definitely do have a passion for dissemination of credible information regarding diagnosis and treatment options to families who find themselves on the "scoliosis journey”. This passion is fueled by the experience of being a four time surgical patient, the father of 3/5 children with scoliosis, and a member of a family with 12/29 (40%) scoliosis patients. For the past thirty years I have tried to live out that passion as a Board member of the NSF, working with the SRS, IRSSD, Cotrel Foundation, SOSORT, AAOS, Medtronic, DePuy Spine and others around the world, in order to educate, encourage, and empower patients and families and give them the Help & Hope they are looking for. Please be assured that in so doing I will continue to advise patients about Dr. Betz, the vertebral stapling option, and the available support groups in as many ways as appropriate.
                  Best Regards,

                  JOB

                  Comment


                  • Originally posted by mamamax View Post
                    Hi Joe ~

                    Good to see you. I think most in forum understand the things you have said and hold a deep respect both for you as a man and the work that you do on behalf of those who have scoliosis (and their families). I've always found you to be very approachable as well, and while i've not picked up the phone to call you - i certainly feel as if i could.

                    The papers you write (as well as your collaborative work with those mentioned), are always a joy to find, highly informative and respected world wide for their honesty and truth.

                    I can't imagine what it would be like without NSF and the work that you do. You do us great service and your place in history serves to fulfill a much needed change towards the gathering of trusted information and its dissemination. You and your work - a blessing to us, our families, and the scientific community. Thank you.
                    Thank you for your kind words.
                    Best Regards,

                    JOB

                    Comment


                    • Originally posted by SLS View Post
                      Hi Joe,

                      I just want to say "hello" and it was a pleasure to meet you a couple of weeks ago when you were in Novi, MI, with Beth & Rhonda at my daughters orthopedic's office. Having you there was a pleasant surprise.

                      Thank you for all you do!
                      Hello to you too SLS!

                      It was a pleasure to be with you all in Novi. I am blessed to do what I do, and I am very grateful that your orthopedist asked me to join him for the occasion. You are fortunate to have someone who has the patient's best interest in mind even when it may be out of the traditional comfort zone. Best wishes to you and your daughter. Please keep me apprised on how she is doing.
                      Best Regards,

                      JOB

                      Comment


                      • Joe,
                        As a co-moderator of the Vertebral Stapling Support Group, I would like to clarify that what we had specifically been hoping for was a link on this page of the NSF website:
                        http://scoliosis.org/links.php

                        We did have a link for several months on the www.vertebralstapling.com website, but after not finding a reciprocal link, we removed it recently because we felt NSF was not supportive of our efforts to provide a separate support group for parents considering VBS. I realize that the NSF provides a significant income financially to you personally - but honestly we are not trying to compete! None of us make any money from our site, and we do not ask for donations to support the site.

                        Would you be willing to add our site to your links page? We would be happy to put the link back if so. We are not trying to compete with your business - just wanted to give parents a support group and place to ask questions that would not get so "tense" when the topic comes up.

                        Best Regards,
                        Cara
                        Last edited by nate03; 06-12-2009, 07:54 AM.
                        Cara, Mom to Nathan
                        Diagnosed 24 deg. in July 2007, progressed to 38 deg. by August 2007
                        Boston Back Brace 8/07 – 12/07
                        VBS 12/10/07 Boston Children's Hospital
                        Dr. Hresko
                        40 Degrees before VBS
                        11 Degrees now!! (2012)

                        Nathan's VBS Video

                        www.vertebralstapling.com

                        Comment


                        • [QUOTE=Joe O'Brien;78560]
                          Originally posted by mariaf View Post

                          Hi Mariaf,

                          In the spirit of stating fact, the following is my actual email response in August 2008 regarding this issue;

                          In response to your email I would like to assure you that both the vertebral stapling procedure and the vertabalstapling.com website have indeed been highlighted on our website for quite some time.

                          First of all, Dr. Betz is one of our Medical Advisors and someone who we highly respect and have worked with for many years (see attached). Contrary to the impression in the email you received, I have been well aware of his vertebral stapling procedure for quite some time. In fact, we are one of the first organizations to advise the scoliosis community about his new procedure in our Spinal Connection newsletter in 2003, which is available in the Medical Update section of our website at Vertebral Stapling

                          We publish, print and distribute this newsletter free of charge to 30,000 people. We also published an article on the Shriners Hospital, and we have personally advised thousands of patients via phone and email about the hospital and the procedure. As a follow up however we would be more than happy to do another Medical Update article with Dr. Betz to highlight the changes during the past five years.

                          With regard to the vertebralstapling.com link, as you can see in the following examples there is, and has been, a significant exposure on our website. So much so, that there has been a little concern at times that some of the posts may be perceived as somewhat more advertising/recruiting oriented than educational.

                          1. Maria has been an active member of our Forum since 2004 with 696 posts as of this email. As you can see in the attached copy of her most recent post in the Adolescent section of our Forum, the link to their website and the procedure is prominently displayed in her signature.

                          2. Amanda is also a member since 2006 and has 112 posts. As you can see in her signature, and in her posts back in February 2008 and September 2007, there is an open link and direct invitation to their website and their Forum.

                          3. In total our Forum has 8 different topical threads specifically titled “Vertebral Stapling” that reflect 295 posts which have been viewed 20,000 times. These numbers do not include the volume of posts on this topic in other threads throughout our Forum.

                          4. The attached Google search on Vertebral Stapling lists our website as the second reference.

                          We welcome the participation of members such as Maria & Amanda sharing their experiences and to date we have been very open and accommodating to them and others using our site as a feeder for their specific areas of interest. Our scoliosis.org website receives 3 million visits per year, and our Forum has 12,000 registered members with a searchable database by topic. “Vertebral Stapling” receives quite a large amount of exposure on our website, and any patient visiting us has a high probability of learning about this alternative to bracing. In addition, it appears highly likely that our website, Forum, and referrals have strongly contributed towards the exponential growth you mentioned for the vertebralstapling.com website. On the other hand, we would welcome a link on the VBS website to our website. I visited the site, but could not find a link. Is there one?

                          Yes, I definitely do have a passion for dissemination of credible information regarding diagnosis and treatment options to families who find themselves on the "scoliosis journey”. This passion is fueled by the experience of being a four time surgical patient, the father of 3/5 children with scoliosis, and a member of a family with 12/29 (40%) scoliosis patients. For the past thirty years I have tried to live out that passion as a Board member of the NSF, working with the SRS, IRSSD, Cotrel Foundation, SOSORT, AAOS, Medtronic, DePuy Spine and others around the world, in order to educate, encourage, and empower patients and families and give them the Help & Hope they are looking for. Please be assured that in so doing I will continue to advise patients about Dr. Betz, the vertebral stapling option, and the available support groups in as many ways as appropriate.
                          Hi Joe,

                          In the spirit of stating fact, here is my email to you from 2/4/09:



                          "Joe -

                          Further to my e-mail of 2/1, I wanted to let you know that I just finished discussing several updates to the VBS site with Amanda and Cara. In addition to adding the names of some additional surgeons who have begun performing VBS around the country, we will shortly be adding links to several other support sites such including Spinekids and NSF!

                          Although our site is still relatively new, and small in comparison to NSF, it is growing every day - and I, for one, am very excited about the number of families being touched and helped by the amount of information currently available on the internet. Not too many years ago (2000) when David was first diagnosed, there was not nearly as much information out there on the web as there is today.

                          Your site has been, and continues to be, a great resource for both patients and parents - and we at VBS hope to one day follow in its footsteps and be able to reach as many families of scoliosis patients as we possibly can!

                          Thanks in advance for your support and I look forward to working with you in the future to reach the above goals.

                          Best regards,

                          Maria"

                          It is obvious that even though you asked about a reciprocal link (which WAS added in February but subsequently taken down when no link to VBS appeared here on NSF), you were not interested in "reciprocating" to us by adding our link here.

                          Also, the email you copied here which you did send to me - still SKIRTS the issue of "will you add a link?" - you state facts about # of posts by me and Amanda. So?? What does that have to do with adding the link?

                          I would have preferred if you were candid from the get-go and said that you did not wish to do so, even though you have links related to other treatment methods. I would have rather been told honestly "it's my site and I only provide links to sites that support certain methods" rather than give me the run around for months.

                          I would have figured that if you truly think as highly of Dr. Betz as you claim to, it would have been a no-brainer for you.

                          Regards,
                          Last edited by mariaf; 06-12-2009, 08:08 AM.
                          mariaf305@yahoo.com
                          Mom to David, age 17, braced June 2000 to March 2004
                          Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

                          https://www.facebook.com/groups/ScoliosisTethering/

                          http://pediatricspinefoundation.org/

                          Comment


                          • Hey, I have no first hand knowledge of any of this but I don't understand why O'Brien is singling out VBS from other treatment modalities in terms of entries on the links page. What could be the motivation for not linking to a VBS site versus linking to other treatment modality sites?

                            Is it possible he didn't understand you wanted a link on the links page?

                            Would it be the only link to experimental surgery? Might he not want to set a precedent?

                            If not then what is the reason?

                            This all sounds very strange with a high chance of misunderstanding.
                            Last edited by Pooka1; 06-12-2009, 08:17 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


                            • Hi Sharon,

                              While I understand how you could think there was a misunderstanding, I can assure you we were quite clear with our request with respect to adding a link.

                              That said, if you are correct - and Joe DID misunderstand us, it could be easily corrected by his adding the link to the VBS site now
                              mariaf305@yahoo.com
                              Mom to David, age 17, braced June 2000 to March 2004
                              Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

                              https://www.facebook.com/groups/ScoliosisTethering/

                              http://pediatricspinefoundation.org/

                              Comment


                              • Originally posted by mariaf View Post
                                Hi Sharon,

                                While I understand how you could think there was a misunderstanding, I can assure you we were quite clear with our request with respect to adding a link.

                                That said, if you are correct - and Joe DID misunderstand us, it could be easily corrected by his adding the link to the VBS site now
                                Good point. Let's "watch and wait" to see if he puts the link on the links page.

                                In the alternate, maybe he can state WHY he doesn't want to do that if it doesn't appear. If it simply doesn't appear without explanation then we are allowed to draw inferences I suppose.

                                I thought O'Brien was good on the "child" preacher problem we had here a while back and that was against interest based on his bio blurb. You'll note we don't have that problem any more. His letter to me in re that incident/debacle was fair and reasoned. I don't know him at all but just based on that, he seemed reasonable. Thus I find this apparent obfuscation confusing.
                                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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