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Treatment: PT using MedX per Mooney & later, McIntire research

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  • What do you think?

    Dingo, It's good to hear that Scott continues to do well!

    Hi All,

    Several months ago, we found our daughter unconscious on our driveway. Three teeth loosened and knees, arm, chin, cheek, & forehead were all bruising and had road rash. She still doesn’t remember what happened, but the good news is that her recovery is slowly continuing. For a period of time, she completely stopped reading, but now she is reading on grade level, which is much lower than normal for her. She has been working on a novel since last summer, but stopped after the fall and has just recently begun writing again. It appears that her math skills were not impacted; however, I recently hired a tutor to help her catch up with her peers due to the “break” she had to take from school.

    For all that she is struggling; she took and passed the entrance exam for the high school GATE Program. Having said that, she asked me to continue gathering data for her science project because she isn’t up to her school work and too many extras yet. I have only taken data on one family since her accident (I explained to them why they were talking to me instead of a teenager) and haven’t had the heart to tell her there has only been one family added to her project.

    Does anyone have any suggestions on connecting with others who are using a MedX CTR (or Cybex CTR) and Roman Chair (or MedX Lumbar)? I know there are more out there because I have emailed and talked to families over the years that are and have used the equipment. Before her accident, she told me she thinks families may be concerned a teenager is too young to work on an experiment like this and that may be contributing to the lack of response. Could that be it?

    What do you think she can do to increase participation in her project?

    A Mom

    Comment


    • Hi A Mom,

      So good to hear from you but SO SORRY to hear about the accident. Way too scary.

      In re finding more study participants, you might try contacting that Roger Schwab guy who owns a gym. Here is his page on scoliosis...

      http://www.mlhf.com/Physical-Therapy...akthroughs.asp

      This is the same guy who was asked repeatedly by Dr. McIntire to change Dr. McIntire's affiliation from Stanford (where I think he was doing a post doc) to University of Kansas where Dr. McIntire did the torso rotation research for his dissertation. Obviously, Schwab wanted the Stanford connection and kept it even though he knew the work was not done there. DIShonest layperson.
      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


      • thanks

        Hi Pooka1,

        Yes, it has been a very frightening time. We are watching to see how much she will recover and worrying how she’ll do her freshman year in high school.

        She did contact a number of people, including Mr. Schwab, requesting they ask clients utilizing Mooney’s PT to contact her. She is wrapping up a number of projects and will likely be ready to take over her science project within the next 6-8 weeks. It is so odd to see her working on one thing at a time instead of juggling a handful of activities, but good to see her happy again.

        I guess I'll just raise the topic once a week until she is able to return to her project.

        A Mom

        Comment


        • UPDATE: bad news

          AnneMarie
          DOB: 11-05-99
          HT: 4'9.75"
          WT: 110.5lbs.
          Tanner: 5
          Risser: 4
          TC: Closed
          Menarche: 3 yrs, but remains irregular
          x-ray: 04-11-13, 31˚ & 30˚
          x-ray: 10-13-14, 40˚ & 31˚ READING INCORRECT
          x-ray re-read by Betz & Braun = 10-13-14, 31˚ & 30˚--2013, 2014, & 2015 primary curve x-ray readings in agreement

          In 2013, we reduced the amount of PT to 1x a week. Then, for a variety of reasons/ excuses we quit doing the Targeted PT on a regular basis 9.5 months ago (ranging from 0 to 2x a month). (AnneMarie was seriously injured; resulting make-up school work, heavy make-up work required over the summer, started a homework intense GATE program in high school, illness, 2nd concussion, still in recovery.) --We stopped the PT due to negligence rather than purposefully. SIDENOTE: Three years later, she is still recovering from her head injury. The neuro's have classified it as a mild TBI.

          She was having severe, sharp pain in the left lumbar area while completing tricep dips during PE and was in pain while walking for two days afterward so she went to the ortho. The ortho erroneously read her x-ray to have “increased 9 degrees.” A year later, she was in pain again due to heavily loaded backpack so we returned to the same ortho who informed us her curve was “much worse” so we contacted Dr.s ABC, Dr. Braun, and Shriners back east because we had recently learned that tethering was being used on skeletally mature girls. Dr. Betz ordered a complete set of x-rays and also reviewed the 2014 & 2015 x-rays. He said her thoracic curve has remained stable for years and the compensatory lumbar curve was well balanced. He did note she now has a small cervical curve. We sent her x-rays to Dr. Braun and he came up with the same readings. (Celebration and later a sigh of relief.)

          She has grown less than 0.25” taller in the last three years, entered puberty awhile back, and has had a Riser of 4 for several years (2015 she is a Risser 5) so in theory her curve is unlikely to progress. Both of our daughters will be seen by annually Dr. Newton during summer vacation with a copy of the x-rays being forwarded to Betz per his request.

          A Mom
          Last edited by AMom; 02-24-2016, 01:47 PM. Reason: new/ corrected information

          Comment


          • Originally posted by AMom View Post
            Her ortho can't figure out what is going on, the curve stopped progressing when she was growing and has started progressing after she had stopped growing. He keeps mumbling about her spine not reading "the book" and wants her to come back in a year.
            Nice update, AMom.

            I just wanted to mention that the pattern you note above is also what happened to Concerned Dad's daughter. He took her out of brace and she didn't progress until well after she stopped growing, when she was 18 I think. She wasn't doing any PT as I recall.

            So it's possible none of this is related to any treatment or lack of treatment. Best to keep that in mind going forward.
            Last edited by Pooka1; 11-23-2014, 07:08 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


            • i want to be an ostrich

              Hi All,

              My daughter has had more pain in her lower back this year so I scheduled an ortho appointment. The first thing out of his mouth when he saw the newest x-ray was that the curve looked worse than last year's x-ray. I had already seen it when it was taken so I wasn't surprised by what he was saying until he told me both curves were in their 20's. Huh? So I asked how the curves could look worse and have decreased in measurement by 13+ degrees. He then proceeded to re-measure the older x-rays and came up with a variety of readings in the teens and twenty's??? I would love for her curves to have decreased in size, but several sets of his prior (higher) measurements were matched by her second ortho in San Diego, Peter Newton, so what he is saying doesn't make sense.

              Knowing her prior reading, I had estimated the current reading would be roughly 45 to 50 degrees. I have been seeing more twist in her torso so I am worried about the results of a second opinion and want a little time to process the information privately before seeing her ortho down south so I will be able to present a calm presence for my daughter when discussing treatment options. Does anyone know how to go about sending her x-rays out to get a second reading?

              BTW, even though she says she wants to do her PT, she does not do it.

              If I ignore reality, will the curve get smaller?

              A Mom

              Comment


              • Hi A Mom,

                Nice hearing from you but very sorry to hear about the back pain.

                Several sets of measurements? Big decrease? This guy does not sound like a scoliosis specialist. I would trust Newton.

                He may have an incompetent x-ray tech. They have to make sure the beam is normal to the spine. Any deviation from normal will produce an apparently smaller curve. I wonder if Newton will want his own radiographs if the ones you just shot are not good. If it is determined they are not good then you may not want to use that place.

                Just throwing ideas out there. Good 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


                • waiting

                  Originally posted by Pooka1 View Post
                  Hi A Mom,

                  Nice hearing from you but very sorry to hear about the back pain.

                  Several sets of measurements? Big decrease? This guy does not sound like a scoliosis specialist. I would trust Newton.

                  He may have an incompetent x-ray tech. They have to make sure the beam is normal to the spine. Any deviation from normal will produce an apparently smaller curve. I wonder if Newton will want his own radiographs if the ones you just shot are not good. If it is determined they are not good then you may not want to use that place.

                  Just throwing ideas out there. Good luck.
                  Hi Pooka,

                  Thanks for sharing! The x-rays look good, it is their reading I am reluctantly questioning. I do trust Newton and have contacted his office requesting they review the x-rays. They should be getting back to me soon. In the meantime, I sent a request to the Institute for Spine and Scoliosis asking if my daughter is too old to be considered in the recently adjusted acceptable age group for the tethering procedure:

                  15.11yro daughter, idiopathic scoliosis, thoracolumbar curve progressing each year, 40+ degrees, Risser 4, Tanner 5, menstrual cycle since 2012, full growth achieved per wrist and endo, 110lbs, 4'9", some back pain noted for 1st time in 2014 w/ more noted 2015, 2008 MRI r/o additional concerns, read on NSF that tethering may be an option for young adults--if so, may I forward her x-rays for consideration?

                  This is the response I received today. I am really not sure if including names is appropriate, so I replaced them with dashes:
                  This is Dr. ---. I just reviewed your intake, and have asked our physician assistant, ---(cc’d here) to reach out to you. She will gather some more information, and discuss your child’s situation and options. Your daughter is not too old for this. I would recommend either sending your child’s films next or coming for a visit with --- and Dr. ---. Typically, Dr. --- and --- will do a thorough preoperative evaluation and if surgery is recommended, I would then also meet you. I review Dr. ---’s recommendation, and take you through the surgery details itself. At that time, you would also meet my surgical coordinator, ---.

                  I bolded the portion in the response I received from the Institute for Spine and Scoliosis.

                  Hopefully, I am making a mountain out of a molehill.

                  A Mom

                  Comment


                  • Wow A Mom that is pretty hopeful! You are being so proactive. Really good work!

                    I hope this pans out.
                    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


                    • Can you tell me what to do differently?

                      Hi Folks,

                      I had joined the VBS/VBT forum several years ago, but when I tried to enter last night, I received the following response and don't know what it means:

                      An Error Has Occurred in the Application

                      Incompatible Browser: InternetExplorer 11.0
                      You are attempting to access the Forum using an unsupported browser. Only the following browsers are supported:

                      •Microsoft Internet Explorer 6.0 or later
                      •FireFox 1.0 or later (same as Netscape 5.0 or later)
                      •Safari 4.0 or later
                      •Chrome 4.0 or later

                      Log In to the Forum


                      What do I need to do to enter the forum?

                      A Mom

                      Comment


                      • PM'ed you, but for others who might be reading: the old forum has transitioned to a facebook group (same people, but reaching an even larger audience.) You can enter fb search of Vertebral Body Stapling & Tethering Support and ask permission to join; the moderators are quick to respond, usually a day or two. See you there!
                        Emily, 43
                        approx 50 T, 36 T/L

                        Comment


                        • tethering

                          Originally posted by 3sisters View Post
                          PM'ed you, but for others who might be reading: the old forum has transitioned to a facebook group (same people, but reaching an even larger audience.) You can enter fb search of Vertebral Body Stapling & Tethering Support and ask permission to join; the moderators are quick to respond, usually a day or two. See you there!
                          Thanks 3sisters! I guess I will have to finally give in and join Facebook.

                          Linda, have the doctors in SF, CA been using tethering for young adults with AIS who are finished growing? Or, are they focusing the tethering treatment on the kids who still have growth left?

                          A Mom

                          Comment


                          • Originally posted by AMom View Post
                            Thanks 3sisters! I guess I will have to finally give in and join Facebook.

                            Linda, have the doctors in SF, CA been using tethering for young adults with AIS who are finished growing? Or, are they focusing the tethering treatment on the kids who still have growth left?

                            A Mom
                            ha ha, the things we do for our kids like joining fb!

                            As far as I know, and as you will see once your favorite teen gets you started on fb, there are probably at least twenty doctors around the world performing VBT now. The few in CA seem to remain more conservative with regards to their patient selection. Maybe Linda knows more- love to hear! There are also doctors in Canada, NZ, Singapore I think, Michigan, NH, Indiana, Spain, India, Australia, some Shriners, the Mayo clinic, CHOP, and more. The ones that I know of taking on older patients remain Dr. Betz and Co in NJ/ NY and Dr. Braun at Dartmouth Hitchcock, NH.
                            Emily, 43
                            approx 50 T, 36 T/L

                            Comment


                            • Originally posted by AMom View Post
                              Thanks 3sisters! I guess I will have to finally give in and join Facebook.

                              Linda, have the doctors in SF, CA been using tethering for young adults with AIS who are finished growing? Or, are they focusing the tethering treatment on the kids who still have growth left?

                              A Mom
                              I believe Mohammad Diab is tethering. He's in pediatrics, however, as opposed to spine. Our average patient is over 60 years old. Not quite the normal tethering candidates.
                              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


                              • waiting w/ hope

                                Thank you Linda. I had checked the web site and couldn't find anything mentioned, but wasn't sure if the site was up to date.

                                I also checked Newton's site and they do not discuss doing tethering on skeletally mature individuals either. As far as I can see, there are only two sites providing surgery to this subgroup of girls, but I had to ask!

                                Janet from Institute for Spine and Scoliosis has already responded and she was every bit as nice today as she was years ago when we contacted her at Shriners. I certainly appreciate her calm manner and willingness to answer questions. Yes, they are tethering individuals who are skeletally mature and are getting positive results. The number of skeletally mature patients is small, but I feel confident because of their experience with the skeletally immature patients and the many other surgeries they have performed. I need to send them her x-rays, find assistance w/ transportation to and from the east coast (we live on the west coast), find out at the visit if they determine if she is a candidate for a double tether, and then schedule the surgery. My daughter requested a summer surgery so she won't miss much or even any school.

                                Maria has already gotten back to me and will help me get on the VBS/VBT Facebook site.

                                Right now, info and support is what I need and that is exactly what I am finding.

                                Thanks everyone.

                                A Mom

                                Comment

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