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  • #61
    Dr. Lenke's comment wasn't based on problems with the instrumentation, it was specifically that there will be additional stress on the unfused vertebrae. Nor did he say that everyone requires additional surgery down the road, he did say my daughter would need it. I'll ask him again at our pre-op appointment if he really believes that, I don't think he says these things lightly, he doesn't strike me as that kind of doctor.

    I looked at Sheena's xrays closely again, L5 is tilted slightly and L4 is wedged into it. Melissa or Laurie, is this how your kid's xrays look?


    Laurie, thanks for the offer, I will be sure to ask if I have more questions. How is Alex doing? Did he recover from his fall ok? I'm just as nervous as ever about the surgery but I've really come to accept it these last few months.

    Comment


    • #62
      Yes, thoracic scoliosis is more common than lumbar scoliosis, and the surgery seems to be a little easier on the patient.

      Dr. Lenke does have a very good reputation, which is why I think he either misspoke, or you misunderstood what he said in terms of your daughter needing multiple surgeries. One way or the other, I think it's a good idea to question him about it, as your daughter may have some unique condition that will require something outside of the norm.

      --Linda

      Originally posted by Sherie
      Linda and Toni:

      I hope you're right, the last thing I want is for my daughter to require surgery ever again. What I know of Dr. Lenke is he's highly regarded amongst his peers (we saw 4 doctors and I asked), performs about 250 surgeries yearly, goes to many seminars to teach other surgeons pedicle screw placement and is heavily involved in research. The rate of complications at his facility also seems quite low at 3.5% so I don't think he means any time in the immediate future.

      Am I wrong in saying that the most common type of scoliosis is thoracic? In those cases wouldn't the fusion be much shorter and wouldn't involve the lumbar vertebrae? It seems to me that these patients recover more quickly and have fewer limitations from the lack of flexibility. Maybe my daughter's case is such that he thinks revision surgery is very probable, her lumbar curve involves L5 but I don't think any doctor would want to fuse that low in an adolescent.

      I guess the point is you have to look at every case individually and not apply what one doctor says to any other patient. What Dr. Lenke told us may be very specific to her but I do trust he has the experience to know what he's talking about. I appreciate what you're saying and it's good to know that there are many out there who are doing fine after so many years.
      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


      • #63
        Sherie,
        What I remember about Alexander's lumbar spine x-rays is that his L3 & L4 do sort of tilt into each other. One surgeon said that because of that we should fuse to L4, two others said they'd see when they were operating whether they'd go to L3 or L4 & the one we chose said going to L4 was not necessary. I'm hoping/praying the latter was correct & that Alexander never needs another surgery.

        Thanks for asking how Alexander is doing: His posture isn't great yet but otherwise he feels pretty good. He started school this week & realized his back didn't like the hard chairs so he's been bringing a pillow to school. He's not happy he can't run around with friends & feels left out of certain activities but otherwise enjoys school. Unfortunately, two of his closest friends are having outdoorsy, camping, skiing or sledding types of birthday celebrations this year & he'll probably not be able to go to those unless special accommodations are made for him. There are a lot of emotional repercussions associated with recovery from this surgery...
        Laurie

        Mother of Alexander & Zachary:
        Alex is 16 years old and in the 11th grade. He has congenital scoliosis due to a hemivertebrae at T10. Wore a TLSO brace for 3 1/2 years. Pre-op curves were T45 & L65; curves post-op are approx. T31 & L34. Had a posterior spinal fusion from T8 to L3 on 7/12/07 at age 12. Doing great now in so many ways, but still working on improving posture.
        Zach is 13 years old and very energetic.

        Comment


        • #64
          Laurie

          I imagine that's hard for a 12 yr old boy, my son is 11 and I know he doesn't want to miss out on anything. I don't have anything to worry about in that respect, my daughter isn't into any sports.

          It seems like a lot of kids have problems with posture, will that improve over time, has the doctor said? Didn't Patrick go to PT for that reason?

          Comment


          • #65
            Hi Sherie,
            When I spoke with the nurses @ our Children's Hosp. about Alexander's posture, they said it was common & that the back muscles need to adjust to their new position. They said it would take at least 2-3 months. It's been almost 2 mos. now & though he is usually standing more upright, sometimes Alexander still leans his shoulders forward. He is also more able to even out his shoulders but usually the right one is somewhat higher than the left. It's all getting better so I think it will probably be okay & I'm trying not to worry (which is very hard for me sometimes - my life for the past 7-8 years has been worrying about Alexander's scoliosis & whether he'd need surgery, what treatments we should do, etc.) We are so happy the surgery is over with & he doesn't have to wear the brace (TLSO) anymore. I'm hoping that we get the okay to go to physical therapist at his next post-op appt. on Oct. 4th. I've already taken him to a D.O. for cranio-sacral therapy & a chiropractor who did gentle vibrational treatments on his upper back/neck/shoulders (to looses muscles) & used a laser to speed healing.

            Take care,
            Laurie

            Mother of Alexander & Zachary:
            Alex is 16 years old and in the 11th grade. He has congenital scoliosis due to a hemivertebrae at T10. Wore a TLSO brace for 3 1/2 years. Pre-op curves were T45 & L65; curves post-op are approx. T31 & L34. Had a posterior spinal fusion from T8 to L3 on 7/12/07 at age 12. Doing great now in so many ways, but still working on improving posture.
            Zach is 13 years old and very energetic.

            Comment


            • #66
              rigo chaneau brace at VA

              Do you still want this info

              Originally posted by Sherie
              I have looked at the Rahmouni website and seen the results, I also wondered how comfortable is a brace than can achieve that kind of correction. Bzebra is the German lady who had significant correction through the Schroth method as a teenager and has maintained it through her 30's by wearing a Rahmouni-made brace only at night. I'm not sure we have anything comparable in the States, but there is an orthotist who makes Cheneau braces, I don't know much about them, couldn't find a whole lot on the internet except for pictures. Our best chance is continuing with the Spinecor and getting adjustments as necessary, at least I know she'll wear it!
              Mother to Sophie, DOB 10/8/95; diagnosed 45T/31L July 07, 54T/39L Aug 07; Rigo-Cheneau brace & Schroth, Tamars, Rolfing; 54T/36L Dec 07; 51T/34L Apr 08.

              Comment


              • #67
                Thanks, but no, she's going for surgery this Nov., however it wouldn't hurt to post the information for anyone else who may be interested.

                Take care

                Comment


                • #68
                  Our daughter is seeing a chiropractor three times a week, doing daily Pettibon wobble chair exercises, wearing a head weight, doing arm punches, being massaged on a traction table (3 x per week), using a bedroll before sleeping, doing balancing exercises, Hatha Yoga, and doing neck traction. Now the chiropractor is getting a new vibration table to use for her. I want to understand more about this before we agree to this treatment so I am wondering if anyone on this wonderful forum has had treatment with a vibration table with a chiropractor? I think the idea is to work on reducing the rotation.

                  I also noticed on the Spinecor website at this url:
                  http://www.scoliosissystems.com/wholebody.html
                  information about whole body vibration exercise. Wondering if anyone has had any experience with this?

                  Ruth
                  Ruth, 50 years old (s-shaped 30 degree scoliosis) with degenerative disc disease, married to Mike. Mother to two children - Son 18 and daughter 14. Both have idiopathic scoliosis. Son (T38, L29) has not needed surgery to date. Daughter (March 08 - T62, L63).

                  Comment


                  • #69
                    gosh, that is an awful lot of different and varied treatment. And I feel guilty sometimes about "all the things" we ask L to do. How is your daughter taking all that??

                    can i just add that what you refer to is not the spinecor website, but the site of a chiropracter who uses the spinecor brace and uses a lot of spinecormaterial to advertise this. I am just saying this as I doubt that the spinecor people really would want to give the impression that they are involved with or endorse all these alternative approaches as these chiropracters advocate.......
                    Last edited by gerbo; 03-24-2012, 04:41 AM.

                    Comment


                    • #70
                      Gerbo:

                      Thanks for the heads up about the website being a chiro website - will ask Dr. Rivard about the whole body vibration exercises and what he thinks of them.

                      My daughter is happily doing all the exercises, yoga, etc. - she never, ever complains. She is very much against having the surgery and is determined to do all she can to help herself - when she makes her mind up about something she can be very, very determined - this can be both good and bad!! (She decided she would learn how to do the Rubik's Cube and mastered it in one month - she can do it in 28 seconds now and will be competing in the Speed Cubing competitions in near future). She has a very good understanding about the mechanics of scoliosis and how the exercises can potentially help her. She is very annoyed with the surgeons for not telling her about Spinecor when her curves were lower and wants to write to them about it asking them to start recommending it to children with lower curves.

                      She hates all medicines, needles, medical tests, etc. so going through a surgery this major with her would be an ordeal for everyone - to take a blood sample three people had to hold her down last time! Fortunately, she likes exercising. I really hope the exercises and bracing help to hold her curves - she does understand, sad though it is, that they may not.
                      Ruth, 50 years old (s-shaped 30 degree scoliosis) with degenerative disc disease, married to Mike. Mother to two children - Son 18 and daughter 14. Both have idiopathic scoliosis. Son (T38, L29) has not needed surgery to date. Daughter (March 08 - T62, L63).

                      Comment


                      • #71
                        (She decided she would learn how to do the Rubik's Cube and mastered it in one month - she can do it in 28 seconds now and will be competing in the Speed Cubing competitions in near future).
                        you mean to say there is a logic to it which you can learn?? Is it not pure luck then?/ That's what i always have been counting on. needless to say i never resolved the cube, three same colours in a row is the best i ever got, got nice patterns though.

                        good to hear she is so motivated. i am sure though that i do not need to tell you there is a point that you need to prepare her for the possibility that she might need surgery, and that really surgery isn't that bad!! There is a risk that surgery becomes synonimous with failure, which it isn't as so many here will happily confirm (melissa and nicole being the most recent people having taken that route and coming out smiling)

                        Comment


                        • #72
                          Gerbo:
                          The Rubik's Cube can be solved using assorted math algorithms which can be learned - I do believe you have to be able to think three dimensionally though.
                          Ruth, 50 years old (s-shaped 30 degree scoliosis) with degenerative disc disease, married to Mike. Mother to two children - Son 18 and daughter 14. Both have idiopathic scoliosis. Son (T38, L29) has not needed surgery to date. Daughter (March 08 - T62, L63).

                          Comment


                          • #73
                            i don't think that I ever got on particularly well with math algorithms. (whatever they are)

                            Comment


                            • #74
                              Sherie:

                              From your posts I read that your daughter did the intensive Pettibon treatment and she wore Spinecor. Yesterday we went to Peterborough, Ontario to see Dr. Horseman, DC about a new Pettibon approach to scoliosis management. He told us Pettibon have found that they can decrease the curve with the intensive treatment but are admitting it doesn't last. He says they need to work on muscle strength too to hold any correction achieved - this takes longer. He recommends two day visits for intensive treatment every couple of months. The treatments now include a TLSO customized brace for four hours a day, with a continuation of the Pettibon exercises, weights, traction, etc.

                              We would like Esme to wear Spinecor for the remaining hours of the day to keep constant pressure on the spine. I notice from your posts that the lumbar curve was your main concern - for us the thoracic is the structural curve...lumbar is compensatory. I am wondering if you think the approach outlined above is worth pursuing based on your own experience with the combination of Pettibon and Spinecor? I am wondering how regularly your daughter had chiro Pettibon treatments and what treatments she received from the chiropractor? Also how often she do the exercises?

                              Also - were Dr. Rivard and Dr. Coullard aware of the combination of Spinecor and chiro treatments and if so, were they okay with this? We thought we saw on their website that no other treatments should be received other than the Spinecor and their physiotherapy program.

                              It is really hard to decide what to do and any advice or experience you have with this would be most appreciated. Thanks.

                              Ruth Tremblay
                              Ruth, 50 years old (s-shaped 30 degree scoliosis) with degenerative disc disease, married to Mike. Mother to two children - Son 18 and daughter 14. Both have idiopathic scoliosis. Son (T38, L29) has not needed surgery to date. Daughter (March 08 - T62, L63).

                              Comment


                              • #75
                                Ruth

                                There was so much involved I think it might be easier if I discussed this with you on the phone. I also have manuals that were made for Sheena and I could fax the pages showing the treatments to you if you have access to a fax machine. Let me know if this would work for you and we can exchange phone #'s by PM.

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