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13 year old daughter with a 44 degree lumbar curve

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  • #31
    Coolblue
    I have been communicating with a mother in India that has a 14 y/o daughter with virtually the same condition as yours. She has developed an exercise therapy with a Physiotherapist that has made significant improvements to her daughters condition. The before and after pictures are remarkable. She asked me to reply to your post so that she can share with you her experiences.

    You can reach her at narayankpl@gmail.com

    Good Luck
    Randy

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    • #32
      Originally posted by coolblue View Post
      Even we are interested in what Dr. Hey thinks as well as feedback from Shriners. Hopefully they would reply soon.
      Who did you contact as Shriners and when?

      I am just trying to recall. Due to the volume of patients they see, sometimes you need to 'remind' them that you are waiting for a response. They won't mind at all.

      Best of luck!
      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


      • #33
        Thank you Randy. Have sent them an email . Looking forward to their response.

        Maria - Spoke to Dr. Hey's assistant. She looked at the Xrays and said that the fusion would go down to L4 if not L5.

        For Shriners we had written to Crystal James mid December and then later sent them a followup email. Would send another reminder today itself.

        Meanwhile we are getting a Torso Rotation Machine made in here so that we can start the exercises at home. The equipment should be delivered by next week.

        Comment


        • #34
          Which doctor does Crystal James work with and at which Shriners hospital?

          I am hoping somebody can perhaps give you another contact for the doctor.
          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


          • #35
            Crystal James is the New PAtient intake Co-ordinator at Shriners Philly. Have asked him to connect to Dr. Betz.

            A copy of the mail has also been marked to Janet Cerrone and you as well.

            Would love to have any other contact for Dr. Betz.

            Thanks

            Comment


            • #36
              Torso Rotation Machine

              [QUOTE=coolblue;
              ...Meanwhile we are getting a Torso Rotation Machine made in here so that we can start the exercises at home. The equipment should be delivered by next week.[/QUOTE]

              “…She has just been for her six monthly checkup and as per the X-rays the curve seems to have gotten much worse. It has progressed by a whopping 11 degrees in these six months….

              Her details are as under :
              Age : 13 years 8 months
              Scoliosis detected on : 16th April 2013
              Cobbs Angle at time of detection : 33degrees for the Lumbar Curve as per X Ray report.
              Cobbs Angle Currently : 44 degrees
              Menarche : March 2013
              Growth in Height during last six months : 5 cm. Current Height : 154 cms
              Gain in Weight during last six months : 2.5 kgs. Current Weight : 41.5 kgs.
              Visual Balance : Good. Difficult to make out that she has scoliosis from visual appearance.
              Pain : No Pain. She can do all her activities normally.
              Braces : Not opted for perhaps due to the x-ray showing a Risser 4 and the fact that it would have a psychological impact on the child not to mention the obvious discomfort.
              Current Regimen (For Past Six months): Aggressive yoga (Iyengar Yoga) and swimming exercises. (avg one hour daily)
              MRI : Clear. No Neurological Deficit found.
              Spirometry : Clear
              Eco-cardiogram : Clear
              Latest Advise by Doctor : Full Fusion Surgery as early as possible.”

              While some structural thoracic curves reduce in size (≥5˚); I have never come across a claim of TR reducing a structural thoracolumbar curve. And, there is little discussion with regard to the impact of TR on a structural lumbar curve. I would tend to be hesitant with the use of Targeted PT on a 44˚ lumbar curve that has progressed 11˚ over six months. Even if it does stabilize the curve while she finishes the final portion of her growth spurt, it will leave her in a position of curve progression throughout adulthood being more likely; wear as surgery now may provide her with better quality of life for decades to come. Either way you go, this is a difficult decision.

              TR does appear to stabilize curves under 40 degrees (I am contacted by a handful of families every month), however, the results for curves over 40 degrees are not consistent (some are stable, but many are not).
              Generally speaking, curves that are less than 30 degrees are less likely to progress than those over 30 degrees; while curves between 40 - 50 degrees are more likely to progress over an adults’ lifetime.

              Since your daughter has begun her menstrual cycle and has a Risser 4, her remaining growth spurt should (generally speaking) be at a slower rate with little growth left. However, your message states that five ortho’s are recommending surgery ASAP, so maybe the possibility of the addition of another vertebrae to her lumbar curve is causing concern regarding the impact on her potential surgery. I am not a medical professional so I can’t say what they are thinking.

              Best wishes on your daughter’s outcome.

              A Mom

              BTW, MedX CTR is the only TR unit used in research. There have been positive reports on Cybex TR units as well. There have been no positive reports on other TR machines (I am guessing their design is not focusing the workout on the necessary muscle groups.) There have been reports of injury on other units.

              Comment


              • #37
                Originally posted by coolblue View Post
                Crystal James is the New PAtient intake Co-ordinator at Shriners Philly. Have asked him to connect to Dr. Betz.

                A copy of the mail has also been marked to Janet Cerrone and you as well.

                Would love to have any other contact for Dr. Betz.

                Thanks
                I knew there was a new intake coordinator but everyone still seems to go through Janet (which I would recommend). Yes, I got the e-mail that you also copied Janet on. I would focus on connecting with her. I just e-mailed you a phone number for Janet in case you don't have it.

                Best of luck!
                Last edited by mariaf; 01-10-2014, 02:49 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


                • #38
                  Originally posted by coolblue View Post
                  Maria - Spoke to Dr. Hey's assistant. She looked at the Xrays and said that the fusion would go down to L4 if not L5.

                  Meanwhile we are getting a Torso Rotation Machine made in here so that we can start the exercises at home. The equipment should be delivered by next week.
                  Cool, I’m wondering if there was any other information from Dr Hey’s office on your daughter? Did he say, better sooner than later? Did he say that she could wait?......did they say a full T2-L4, possibly L5 fusion? Anything else of importance?

                  I sure hope you report on how this all pans out with the torso rotation machine.....of course, your going to have to x-ray often to monitor her curves. How often, I cant say, but it would be good if you had a local surgeon do the monitoring......

                  Things are going to be ok.

                  Ed
                  49 yr old male, now 63, the new 64...
                  Pre surgery curves T70,L70
                  ALIF/PSA T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
                  Dr Brett Menmuir St Marys Hospital Reno,Nevada

                  Bending and twisting pics after full fusion
                  http://www.scoliosis.org/forum/showt...on.&highlight=

                  My x-rays
                  http://www.scoliosis.org/forum/attac...2&d=1228779214

                  http://www.scoliosis.org/forum/attac...3&d=1228779258

                  Comment


                  • #39
                    Meeting with Dr. Lenke

                    Here are the excerpts of my meeting with Dr. Lenke last week :

                    Surgery looks imminent was his opinion when we met us. He was ok with us waiting and watching while monitoring the progress of the curve. As per the current curve progression he felt that a full fusion from T3 to L3/L4 could be advised. Though from his talk I felt he would try his best to save a lumber level which I felt would be absolutely wonderful.

                    He also felt that my daughter would more likely than not be a candidate for a future (maybe after 20-30-40 years) revision surgery for fusion till the pelvis due to disk degeneration of the remaining lumber levels – a point that has been made earlier in the forum by

                    He felt that our efforts on PT , Yoga, Scroth, TRS which though have not yielded medically proven benefits would not harm but in fact be helpful in keeping the curve flexible which was beneficial in the long run.

                    He advised her to continue to be active in sports as well as concentrate on her studies because that too is important!!! WOW. Spoke to my daughter like a parent does. Also advised her to stay slim.

                    Was gracious enough to be willing to accept her as his patient if and when we do decide to have surgery. Such a relief to have one of the best in the field as her surgeon. He even encouraged us to keep her records posted to him via email after her six monthly xrays are taken to review our call on surgery and help us in monitoring her progress.

                    Also agreed with my logic for waiting to keep options for non surgical treatments that may be round the corner. He said that tethering was an option for thoracic curves but till date so much for lumbar. But seemed hopeful regarding the progress in these areas and something could work out for now. Fingers crossed.
                    He spent a fairly long time with us in the lobby of a hotel reception in which he was staying and attending a conference. It was indeed very nice to have met us in the middle of the conference. To top it all he refused any consulting fees despite our insistence. We really felt humbled by the entire experience to say the least.

                    Thank you Dr. Lenke.
                    Last edited by coolblue; 05-08-2019, 06:36 AM.

                    Comment


                    • #40
                      Originally posted by coolblue View Post
                      He even encouraged us to keep her records posted to him via email after her six monthly xrays are taken to review our call on surgery and help us in monitoring her progress.
                      Very well done....I think you had an excellent meeting!

                      Be sure to keep us posted!

                      Ed
                      49 yr old male, now 63, the new 64...
                      Pre surgery curves T70,L70
                      ALIF/PSA T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
                      Dr Brett Menmuir St Marys Hospital Reno,Nevada

                      Bending and twisting pics after full fusion
                      http://www.scoliosis.org/forum/showt...on.&highlight=

                      My x-rays
                      http://www.scoliosis.org/forum/attac...2&d=1228779214

                      http://www.scoliosis.org/forum/attac...3&d=1228779258

                      Comment


                      • #41
                        Dr. Lenke... what a guy!
                        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


                        • #42
                          I am glad that you are gathering information in making your plan. It must be a challenge to try to negotiate visits from India. Is that where your family lives now? You sound like a great advocate for your daughter. I wish her the best! Susan
                          Adult Onset Degen Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Sev disc degen T & L stenosis

                          2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
                          2014: Hernia @ ALIF repaired; Emergency screw removal SCI T4,5 sec to PJK
                          2015: Rev Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
                          2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone
                          2018: Removal L4,5 screw
                          2021: Removal T1 screw & rod

                          Comment


                          • #43
                            Dr. Lenke is definitely one of the good guys - both in and out of the OR apparently.

                            And Coolblue's daughter is very fortunate since he is willing to literally travel the globe to get her the best care possible.
                            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


                            • #44
                              Thank you Ed, Polka,Mariaf, Susan and others. I simply preparing for the worst and hoping for the best. As probably all of us are. Tomorrow the TTS machine is going to come in. Shall try to post videos and photos of the same.

                              Comment


                              • #45
                                Update

                                Guys,

                                Sorry for the long absence. Since my last post in Feb these we have had two xrays one in Aug and the other in Oct. Both of which are attached here. The lumber curve has increased to 60 and in the second the thoracic has also gone up to 55. Apart from that there is a pronounced cervical tilt and now some noticeable trunkal shift as well.

                                Looking into the above we have decided to no longer delay the surgery and try and book an appointment ASAP. The Surgeon is Coimbatore (India) based Dr. Rajashekheran Reddy who is fairly accomplished in this field.

                                During my meeting with him he did say that he would do the surgery T4/T6 - L4/L5 using latest instrumentation but did not specify which ones. Also heard that he does use some kind of robotic guided surgery but not sure if the same would be used in my daughter's case.Should I ask him ? Also my daughter is keen to know the possible height gain and extent of her curve correction as well as corrections in hump, pelvic tilt and side curves. Shall be asking him via email though not sure he would appreciate us asking him so many specifics. Would love to have your views on the same.

                                Tough decision but whats got to be done - got to be done. Anyways after having tried all possible options at least wouldn't feel that we did not try our best.

                                Thank you all for your encouraging and helpful posts. I'm sure these are read by tens of thousands who are unable to post but benefit from shared experiences.

                                Pls do keep your inputs coming in regarding preparations for the surgery. My daughter is especially keen to know things she can or cannot do after surgery. Have told her that skydiving and rugby is off.... LOL

                                SpineAP 17Oct14.jpg
                                SpineAP 09Aug14.jpg
                                Last edited by coolblue; 05-08-2019, 06:37 AM.

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