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  • SpineCor - Bad Experience in NYC - Replacing Straps

    I recently visited a SpineCor chiropractor in NYC, maybe one the most experienced SpineCor professionals in the United States, with over 1,000 patients. It was a very bad experience.

    My 8 yr. old daughter and I over the past year have seen 4 orthopedic surgeons and 3 chiropractors. I have read hundreds of threads on forums and read several books. I have worked very hard to learn as much as I can about scoliosis and our options to try and develop a program that is best for her.

    We got the SpineCor brace Nov 2009 at Children's Hospital when she reached 36 degrees. The orthopedic surgeon recommended SpineCor.

    The beginning of this year (Jan 2010) we visited Dr. Sid in NYC to do the Clear 2 week intensive treatment program and to have the SpineCor brace adjusted. We chose Dr. Sid because he was certified in Clear and SpineCor. Dr. Sid and his staff were outstanding working with my daughter.

    Most recently we visted Dr. Betz (Feb 2010) at Shriners Hospital in Philadelphia and Dr. Durrani (Mar 2010) in Cincinnati OH at Center of Advanced Spine Technologies to discuss VBS options. We were very pleased with both doctors, not only for their expertise, but their willingness to work with us.

    My daughter is wearing the SpineCor brace but Dr. Betz recommended a Boston brace to try and reduce her curve below 30 degrees, maybe down to 25 degrees. I asked if my daughter could wear the SpineCor brace to school and to play sports and wear the Boston brace at home and at night. He said yes, if that is what you want to do, and if that is what your daughter wants to do. His only requirement was that we get the SpineCor brace correction (18 degrees) closer to that of the Boston brace (13 degrees).

    I wanted to also learn Schroth to supplement the Clear exercises that my daughter does every day. We decided to go to one of the leading SpineCor chiropractors in NYC who was recently certified to teach Schroth. (not Dr. Sid).

    However, before visiting this new chiropractor I clearly explained my expectations that we needed a greater correction with the SpineCor brace. He said he would look at it and see if that was possible, but could not guarantee it. He said there would be a one hour consultation for $150 and Schroth exercises $150 per hour (4-5 hours) for a total of $750-$900. Insurance pays for none of it so we are very cost conscious. I shared this with him.

    We ended up spending 3 hours of consultation reviewing old x-rays and working on the SpineCor brace (he had no other pending appointments). He said the 3 ½ month old straps were no longer any good so we would need new straps. I reluctantly agreed but he said it was necessary for the brace to work correctly. He totally readjusted the SpineCor brace and when done I said it was not near as tight, therefore her correction would be worse than 18. He said this was best for her. I said that the goal of the adjustment was to get a better correction. He said "I know what you wanted but I have fitted over 1,000 patients and I know what is best. A better correction in the brace is not what she needs." He totally disregarded what I had asked. He had no intentions to try and do what I asked. His only intentions was to refit the brace the way he wanted it.

    We ended up having to pay $1480 (yes! charged me $150 per hour for the 3 hour consultation) and while we did learn some Schroth exercises we now have a SpineCor brace that does not accomplish what Dr. Betz recommended. I showed the old straps to another SpineCor chiropractor and he said all of the straps were fine. In addition, he said the new fitting was too loose and would not correct her. We will probably go back to the original SpineCor adjustment and the original straps. Her curve is about 28-30 degrees right now OOB and we feel the SpineCor brace and the Clear treatment have helped her. We want to continue with what we are doing, not start over with a brand new adjustment (with much less correction in the brace).

    This was all very frustrating. I just wanted to share this with other SpineCor parents hoping that you may learn from my costly mistake. It is my fault for not stopping him and just saying NO! But I truly thought he was trying to do what we asked. He is the only professional, over the past year, that made no attempt to work with me to do what we asked. I respect his experience of having over 1,000 SpineCor patients, but if he was not going to help us, he should had said that before charging me an extra $650 (2 additional consultation hours and $350 for new straps).

    Please feel free to PM me if you have any interest in knowing the chiropractor name/business so that you can either avoid them or at least be aware of how the practice works. If you are in NYC I would recommend Dr. Sid for SpineCor.

    I would be interested in the experience of others regarding the replacement of the straps. Does this mean we need to replace the straps every 3-4 months. I also talked with someone who got their SpineCor brace in Dec 2009 and they had to replace the vest and straps already (by the same chiropractor). IS THIS COMMON? This is very expensive, especially when insurance does not cover it.

    Thanks

    Michael

  • #2
    Sorry, you had such a bad experience

    As for straps - my daughter has been in SpineCor since Nov 2008 and still using the same vest, straps and pelvic base as for now (almost 1.5 years later)

    Good luck with your child!
    from Boston, MA, USA

    9 y.o. daughter
    07/08 - diagnosed with L23
    10/08 - wait and see: L25
    11/08 - Spinecor: L15
    01/09 - Spinecor: L15
    06/09 - Spinecor: L14
    11/09 - Spinecor: L14
    04/10 (Out-of-brace): L30-T30
    08/10 - out of Spinecor
    01/11 (Out-of-brace): L42-T30
    02/11 - Rigo-Cheneau and Schroth

    Comment


    • #3
      Hi Michael,

      What a shame this happened to you! I know how hard you are trying to do right by your daughter and I can't say I would have done things much differently - I mean, it sounds like you didn't know until you were halfway through the appointment that he (the chiropractor) would not accomplish what you set out to do (get the curve down closer to 13 degrees).

      I think it was horrible of him to charge you all that money, especially since he knew it was coming out of your pocket. He could at least have warned you up front.

      Having seen Dr. Betz and his team in Philly for over six years, maybe I'm spoiled, but I'm so tired of hearing about folks getting treated this way. Seems this guy wasn't listening to you and what you were trying to accomplish.

      And I'm sure you see the difference - when you walked into Shriners perhaps your plan and Dr. Betz's plan were not identical, but he WORKED with you and listened to you.

      I don't know what else to say, Michael - but hang in there - I know you'll get her curve down as much as possible with the old straps (which, for what it's worth, is exactly what I'd do) and take it from there. I know the plan was for Syd to wear the Spinecor just to school - and with all the vacations and time off these kids get, hopefully you'll get as much time in the Boston brace as you can.

      Best of luck and keep me posted.
      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


      • #4
        I know of this chiropractor, and fear he will give Schroth a bad name. I am not the only person who is concerned about this (I know who he is). While your experience was clearly not good, and really you should absolutely try to get your money back (It is ridiculous that you should have to pay that much money and not get what you want and asked for), I hope that it does not taint your Schroth experience.

        Comment


        • #5
          Hi Michelle - regarding replacement straps: I have just completed 1 year of bracing and have not had to replace the straps. I have however, always hand washed and dried the brace, and never used bleach on the straps. To my knowledge the only time they need to be replaced is when they have lost elasticity due to wear and tear .. so a lot depends on how active a person is and the general care given to the brace (bleaching will cause loss of elasticity).

          I use the NYC providers and have not had anything but good experiences. Sorry you are having a frustrating experience right now. Anyway, wishing you and your daughter all the best, looks like you have a good team in place with CLEAR & Dr. Sid along with Drs. Betz & Durrani and I hope you'll keep us updated on the combined bracing treatments along with Schroth.

          Comment


          • #6
            ditto. We didn't replace straps until 2 1/4 years into it. They would adjust the placement of the straps on the velcro to allow for growth at each appointment. we go to montreal.
            daughter, 12, diagnosed 8/07 with 19T/13L
            -Braced in spinecor 10/07 - 8/12 with excellent in brace correction and stable/slightly decreased out of brace curves.
            -Introduced Providence brace as adjunct at night in 11/2011 in anticipation of growth spurt. Curves still stable.
            -Currently in Boston Brace. Growth spurt is here and curves (and rotation) have increased to 23T/17L

            Comment


            • #7
              Dr. Deutchman - NYC - Scoliosis Systems

              Dear Dr. Deutchman (Scoliosis Systems)

              Thank you for the PM. Since you are reading this forum and due to the number of people who have contacted me regarding this matter it is probably best that we have an open forum discussion on it. I welcome your participation. It provides a great opportunity for you to explain the value of SpineCor and your philosophy around it. It is not a philosophy that is shared by all other SpineCor professionals and I am not sure it is shared by the inventors (based on some discussions I have had with some of the parents whose children are their patients). You need to understand, I am very thorough in what I do, many on these forums know that. So, let's get to the details of this appointment.

              I have been wanting to learn Schroth so that Syd (my daughter) can do some Schroth exercises. I recently learned you have been certified. Syd and I had to go to Shriners Hospital in Philadelphia traveling from OH to get fitted for her Boston brace. Since you are in NYC we decided to visit you and learn Schroth.

              In addition, since you have fitted over 1,000 patients with the SpineCor brace I thought it would be great if you could look at Syd's brace and "optimize" it for a greater in-brace correction of the curve. I explained the reason for it was because Dr. Betz, VBS orthopedic surgeon, at Shriners Hospital had evaluated Syd and with her 36 degree curve he recommended VBS/Hybrid Rod surgery. However, if she could get her curve down below 30 consistently, preferably close to 25, for 6 months, she could have VBS stapling only, no hybrid rod. Syd is only 8 but fully understands this and does not want the rod. I don't want the rod. Dr. Betz recommended a Boston brace to reduce the curve. We asked whether Syd could wear the SpineCor brace to school and for sports, and Dr. Betz said under one condition: We can get correction of the spine in the SpineCor close to that of the Boston brace. The curve in the Boston brace is about 13 degrees. The curve in the SpineCor brace is about 18 degrees.

              I contacted you for the Schroth exercises and asked whether you could look at her brace and optimize it to get more correction when she is in the brace. You said no, that you would not do it. But then later you said that you would be willing to at least look at it and see if you could do it.

              I was told the cost would be $150 for the consultation and $150/hour for the Schroth exercises. I assumed that the consultation would be looking at her x-rays, looking at the SpineCor brace and making adjustments (moving straps, tightening straps, etc.).

              The consultation started with reviewing all x-rays to understand Syds history. You wanted to look at all her x-rays, so we provided you with a couple discs and you reviewed them and performed your own cobb angle measurements on all of them. You found some of the measurements incorrect but that is to be expected.

              You then proceeded to evaluate Syd's brace. You noticed the pelvic area was not tight enough and that the vest was too high in the back. This was good. But then you proceeded to pull off all the straps and tell me they were not any good and that they needed to be replaced. I wanted her brace fixed to get more correction so I agreed to replacing the straps. It sounded like I had no other choice. You then refitted all the straps, made some adjustments, etc. I am thinking great, now she will have greater correction, even if I have to pay for the new straps.

              That night Syd and I noticed that the straps were not very tight. Some of the key straps were not pulling on her very hard. Syd could easily snap them, usually a sign the straps are too loose. I approached you the next day and said I was unhappy with the brace because it was not providing more correction. As a matter of fact, it was providing less correction because it was so loose.

              You agreed and said the old brace was giving more correction but it was fitted wrong. Now it is fitted properly and while it may be providing less correction it is best for Syd. And you reminded me that you knew what was best for Syd because you had fitted over 1,000 SpineCor braces.

              You openly acknowledged at that time that we were there to see you to get a greater correction in the SpineCor brace. But then you kind of laughed and said "you should have known I would not do it". I said, no, I expected a greater correction from all the work that had been done and with the new straps. You also acknowledged that the curve correction, in the adjusted brace, was probably less than when we came. This meant we spent all this time and money and we have a brace providing less correction than when we came.

              And you wonder why I am disappointed with our visit. We spend $650 and we have a brace that provides less correction than when we came. This was not about what you wanted to do with the brace. It was about what needed to be done so that Syd could wear it to school and to play sports, based on Dr. Betz's recommendation.

              I have removed all the new straps and replaced them with the old straps to get it back to where we were. I guess at this point I will do my best to tighten the straps for more correction.

              I will also be contacting Dr. Rivard and Dr. Coillard regarding this situation.

              I put the message on the forum so that others are aware of it. I have been fortunate, prior to this experience, that every surgeon, physical therapist, and chiropractor has been willing to listen to me and work with me to do what is best for Syd. I am sure you meant well, but sometimes you need to listen to the parents and realize that its the parents who are the most important people in helping their child through the many years of scoliosis. And in the end, it is ultimately our decision on what is done or not done.

              Thanks

              Michael

              Comment


              • #8
                Michael. Excellent post. A stand out in terms of both substance and form.

                This is most disturbing:

                You openly acknowledged at that time that we were there to see you to get a greater correction in the SpineCor brace. But then you kind of laughed and said "you should have known I would not do it". I said, no, I expected a greater correction from all the work that had been done and with the new straps. You also acknowledged that the curve correction, in the adjusted brace, was probably less than when we came. This meant we spent all this time and money and we have a brace providing less correction than when we came.
                So he knew the exact reason you were there and deliberately lead you on and never intended to address that reason. And then took several hundrd dollars from you. Beyond despicable.

                Chiro is a business and honest chiros admit they should not be treating scoliosis, especially in kids. This particular outfit seems to be doing extremely well in terms of raking in the money but it is unclear if they have ever helped a single kid. I almost wish surgeons were using Spinecor just to keep this large revenue stream out of the hands of chiros.
                Last edited by Pooka1; 03-12-2010, 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


                • #9
                  Hi Michael,

                  I'm so sorry to hear of this recent negative experience with Syd's spinecor. This Dr Deutchman sounds incredibly unscrupulous, and for him to contact you through this forum after your earlier post, incredibly unprofessional. If this happened to me I would look into reporting him to his licensing board as well as file a complaint againt his state business license. You have worked so hard (not to mention spent so much money) to try and do the best thing possible for Syd, only to have this happen. Unfortunately, these types of incidents, as well as uncontrolled in-brace progression that is unmonitored due to spinecor protocol, combine to give spinecor a very bad reputation.

                  I do not understand in any way how the new brace adjustments, with the brace markedly looser, could possibly help Syd's curve.

                  In regards to Deutchman, I believe if he harassed you through the PM system here, you should report the offending posts to Linda Racine, and in my opinion Deutchman should be at least warned that this violates the rules of the forum here. He does not belong on this forum if he uses it for this purpose, and I don't care how many spinecor braces he has fitted.

                  And BTW, if he has fitted over 1000 spinecors and "knows best" you'd think he would trumpet to the world his success. I would love to know the details about his patient's outcomes.

                  Hang in there Michael, you are a good parent and Syd is lucky for that. Dr Betz will be the most help to you and Syd.
                  Gayle, age 50
                  Oct 2010 fusion T8-sacrum w/ pelvic fixation
                  Feb 2012 lumbar revision for broken rods @ L2-3-4
                  Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


                  mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
                  2010 VBS Dr Luhmann Shriners St Louis
                  2017 curves stable/skeletely mature

                  also mom of Torrey, 12 y/o son, 16* T, stable

                  Comment


                  • #10
                    Everyone

                    Thank you for your support. As many of you have gotten to know me I have done about everything I can to learn and do what is best for Syd, just like each of you. I have met with many different people who all have their own opinion and experience. And that is okay, it is expected. I value what I hear from each of them but I also have to determine what is good, and what is not so good. We parents have one agenda - DO WHAT IS BEST FOR OUR CHILD! Unfortunately, professionals we meet sometimes have their own agenda, whether it is to promote their own product/service, to make more money, to criticize another form of treatment, or hopefully to do what is best for our child.

                    We parents can pretty quickly recognize the professionals who have their own agenda, it usually begins with them telling us why all other treatments are bad. Every treatment for scoliosis is in question (i.e. hard brace, soft brace, clear method, schroth method, vbs, etc.) including the professionals who treat it (i.e. orthopedic surgeons, chiropractors, physical therapists, orthotists, etc.).

                    I can find research/studies that support every treatment and research/studies that prove each of them wrong. This is the challenge with scoliosis. So, until there is one solid answer, we parents have no choice but to evaluate all the options and all the professionals and determine which ones should be part of our plan and which professionals should be part of our team.

                    In some cases I have met great people who are 100% sincere in helping Syd. But unfortunately their treatment may not work for her. But I have to give them credit for believing in their solution and their commitment to Syd.

                    It has taken a lot of work with some professionals to step away for a moment and be open and honest with me. This is always a major breakthrough in the relationship. When I can get a professional for a moment to evaluate their own treatment and be open to other forms of treatment, this is a great step forward. All of a sudden they become a very important part of the team.

                    For example, when Dr. Sid who is certified with Clear is willing to move beyond other Clear Institute professionals and recommend Clear AND a brace (SpineCor), he has moved on and is thinking about what may be best. No other Clear professional would consider a brace as being part of the treatment. My logic, whether it was right or wrong, could only conclude that the Clear treatment with a soft brace to hold the curve improvements only made sense, and it allowed the muscles to develop. So, I was willing to pay the premium fee to travel to Manhattan for the treatment.

                    But it was not only the willingness to combine two treatments, but when I challenged the value of the traction chair vs a hard brace as an investment he was willing to listen and understand my reasoning for it. When that happens, you know you have a new member of the team that you can trust. I am not supporting Clear, SpineCor, traction chair, or a hard brace. The point is that I have found a professional that is looking out for what is best for Syd.

                    The same with Dr. Betz, who strongly feels the Boston brace is the right brace. However, due to his lack of experience with the SpineCor, he was open to letting Syd and me, make our decision to wear it part-time (school, sports), and he was more than willing to continue to work with us. He just had one requirement: get the curve correction as close to the Boston brace as possible. At that moment, he became a valuable member of the team. He became someone I can trust.

                    Until someone comes up with the one solution for scoliosis I believe it takes a team of people, not one professional. I continue to believe that the solution includes bracing, physical therapy, and then maybe surgery. I may be wrong. No single professional can be the expert at all of these, therefore, we parents are left with the challenge to find the best professionals.

                    I know I am rambling and preaching to the choir, sorry.

                    Again, I want to thank you for your support. In the business world in which I live I can make almost anything happen and control almost anything. But with scoliosis I can't! And it bothers me very much. For Syd's future I refuse to let this beat us! Support and advice from all of you helps tremendously.

                    And probably the most important part of the team not mentioned yet is each of you, who are willing to take the time to listen and to give your advice and to share your own experiences. Your recommendations may or may not be in sync with what I think is best for Syd, but that is okay. It is always helpful to hear different views. Many of you have been through this much longer than me, so I wholeheartedly value what you have to say.

                    Thanks

                    Michael
                    Last edited by michael1960; 03-12-2010, 08:53 AM.

                    Comment


                    • #11
                      Hey Michael,

                      I wrote a long post to you on the other forum but wanted to comment here as well.

                      I want to lend my support along with everyone else. I think if Dr. Deutchman's intent was to intimidate you, he's barking up the wrong tree, because I know you are focused on one thing and one thing only - what's best for Syd and you won't let anything stop you.

                      Sadly, that should be his goal as well, which it obviously isn't. And you're right about Dr. Betz. I trust him with my son's care 100% and have for over six years. He has no hidden agendas or motives.

                      Gayle raised an excellent issue. First we had Dr. Rivard reading posts and leaving a message on MJB's home phone. Now we have Dr. Deutchman reading your posts and sending you a Private Message.

                      Something is WRONG here - and yes I think they should both be reported to their respective licensing boards or other appropriate agencies.

                      In addition, doctors may be able to pose as parents and join forums and there's not much the moderators can do about that. However, on the VBS site for example, we screen members and would never KNOWINGLY allow a doctor to lurk and read what our members feel they are saying in confidence to other parents.

                      It's just wrong.
                      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


                      • #12
                        Hey Michael,

                        I am glad you posted your experiences....

                        I also had troubles with this company.

                        Had I read your post, I think I would of ran the other way. Did you ever wonder how can they be in the business of helping people...or is it the business of making money?

                        In our situation we never had any services ..so The only person he helped is his bank book...I would never ever go back to that company... I am still battling getting my refund.

                        I would call the BBB, report it...
                        age 15
                        Daughter diagnosed at age 13
                        T20 l23 10-09
                        T27 L27 1/2010

                        T10 L 20 in brace 4/2010
                        T22 L25 12/2010 out of brace
                        T24 L25 7/2011 out of brace

                        Type 1 diabetes- pumping
                        Wearing a Boston brace and Schroth therapy
                        Faith, Hope, and Love- the greatest of these is Love

                        Comment


                        • #13
                          Michael if your interested in schroth therapy..I would highly rec. scholiosis rehab in Wi.

                          They give you pages of references....and they now offer a summer camp....

                          I just want to thank those here that are honest and share the true experiences....its been helpful.
                          age 15
                          Daughter diagnosed at age 13
                          T20 l23 10-09
                          T27 L27 1/2010

                          T10 L 20 in brace 4/2010
                          T22 L25 12/2010 out of brace
                          T24 L25 7/2011 out of brace

                          Type 1 diabetes- pumping
                          Wearing a Boston brace and Schroth therapy
                          Faith, Hope, and Love- the greatest of these is Love

                          Comment


                          • #14
                            Thanks for the recommendations. I have returned the straps for a refund. He said he would give me a refund. That is a good start. It would be nice if he would also refund all the time spent on refitting the brace. I will wait and see how he handles it. I hope I do not have an issue with getting my refund.

                            I have heard from many people on this forum and other forums that they are getting up to 2 years or more out of their SpineCor straps. Some of these people are going to Dr. Rivard and Dr. Coillard. It sounds like the approach of the inventors is to not replace the straps until absolutely necessary.

                            I was also told, during this visit, that it is an improper fitting to try and focus on reducing the curve too much. However, at least one person I talked with who is going to the inventors, is getting a 20 degree curve reduced down to about 2 degrees. That is a 90% reduction in brace. We are already getting a reduction from 30 degrees down to about 18 degrees. But to match the Boston brace we wanted to get closer to maybe 15 degrees or even 13 degrees if possible. So I was only asking for an additional 3-5 degrees. I would have been ok with us reaching 15 degrees, which would have been a 50% reduction (compared to 90% reduction). I continue to learn and continue to see so many differences between all the scoliosis professionals.

                            Thanks Again
                            Michael

                            Comment


                            • #15
                              Originally posted by michael1960 View Post
                              However, at least one person I talked with who is going to the inventors, is getting a 20 degree curve reduced down to about 2 degrees. That is a 90% reduction in brace.
                              Don't take that to the bank. We have 2 instances just in this cozy little group of "irrationally exhuberant" reductions claimed by the Montreal crowd.

                              I don't believe their clams at all.
                              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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