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  • #16
    Lori,

    I have a 16 year old daughter and a 19 year old son. Please do not beat yourself up. I can tell you that neither of my kids would wear a brace to high school unless, as you say, they were wrestled to the ground.

    I also remember our former orthotist telling us about a teenage girl who used to leave the house every day with her brace on but he could tell she wasn't wearing it as precsribed. Turns out that she'd leave the house and hide it in a bush and then put it back on before walking in the door from school.

    We can talk, preach, beg - but none of it will penetrate the teenage mind once they have it made up

    In all honesty, thinking back to my own teenage years, I doubt I would have worn one either.


    Good luck,
    Last edited by mariaf; 09-29-2007, 08:33 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


    • #17
      Lori,

      Everyone is so right about not beating yourself up. I wore a brace in my teens and I can tell you firsthand, it was hell although I did finally adapt to wearing it. Turns out, even though I was pretty diligent about wearing it and doing the prescribed exercises, it was a failure for me. When my oldest son was diagnosed, I freaked thinking about him having to go through the same thing. We were "on the fence" with bracing for him. I knew compliance would be a problem b/c he would have had a Milwaukee-no hiding that thing! Dr. was honest in telling us there was a good chance he would need surgery anyway in spite of bracing and with as quickly and aggressively the curves & rotation progressed in the year before his surgery, I knew in my heart this was true. My only regret is that his growth wasn't complete, but to me it was important to consider the emotional impact of being braced, having it fail and having to go through surgery anyway.

      This is so hard, because there are no perfect solutions here. Good luck-

      Renee

      Comment


      • #18
        I know that you are both right, but sometimes you can't help feeling guilty. I feel like I dropped the ball when he was first diagnosed. I took him to our pediatrician after the school nurse found it and he said that the curve was minor and we would just have to periodically check it. Well, how many times were we in that office for sick visits and I never thought to ask him to check it again? I wonder if it was ever in his charts to begin with and why he never checked it again. By the next school exam, it was already in the 30's and the pediatrician sent us to an ortho. who was a total jerk. He yelled at Chris for slouching in his chair and I had all I could do to keep from telling him off and walking out. He sent us for physical therapy (what a waste of time and $) and suggested we go to Childrens Hospital. Live and learn I guess. I have 3 other kids and I'm already scrutinizing their backs and each time they go to the pediatrician, I plan on having him look at their backs!

        Renee, was your son's surgery as bad as you thought it would be? The Dr. told us that he thought an anterior fusion would be better for Chris. Do you know which one (posterior or anterior) is a more difficult surgery? I just wonder what makes them decide on one or the other. Thanks for you help.

        Lori
        Lori

        Mom to Christopher, age 17, Mark, 13, Heather, 10 and Michael, 8
        Chris had surgery with Dr. John Flynn at Children's Hospital of Philadelphia on December 12, 2007. He is fused T4 to L4.
        Dr. Flynn is an AMAZING surgeon!

        Comment


        • #19
          Originally posted by LorDon
          I feel like I dropped the ball when he was first diagnosed. I took him to our pediatrician after the school nurse found it and he said that the curve was minor and we would just have to periodically check it. Well, how many times were we in that office for sick visits and I never thought to ask him to check it again?Lori
          Hey Lori,

          I know it's hard not to blame yourself - we all do it - but think about it - if a doctor, who is supposed to know his/her stuff, tells you something is minor and won't be a problem, we tend to believe them. Nobody is going to insist that the doctor tell them there is something major wrong with their child.

          When we first noticed that David's back didn't look quite right, we brought it to the attention of our pediatrician. Since David was so young, she never expected scoliosis and attributed his asymetry to "extra muscle" on one side. She's alway been on the money so I took her word for it.

          I know how tough it is not to feel guilty or responsible - I kicked myself for a very long time over not pushing harder for an x-ray even though the doctor was telling me not to worry.

          You, like me, may have gotten some bad advice but you did not drop the ball.
          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


          • #20
            Hi Lori,

            You mentioned that your son's curves are 46 and 54...is that 46Thoacic/54Lumbar? If so, then the lumbar curve would be the main structural one. Do you know if the thoracic curve is also structural (its own curve) or compensatory (tries to balance body caused by 1st curve)?

            Posterior approach is used on thoracic and thoracolumbar curves.
            Anterior approach surgeries are used a lot on younger patients with (flexible) thoracolumbar or lumbar curves. The benefit of this approach is fewer vertebrae may be fused, less pain and faster recovery. Smaller incision, less scarring. There may be complications when this approach is used to correct curves higher in the back b/c there may be the need to remove a rib, deflate one of the lungs, and move the diaphragm to access the spine. In this case, a posterior approach is a little less risky but a lot more invasive. With the posterior approach an incision is made down the back, and the tissue surrounding the area to be fused is stripped away. In your son's case, if the thoracic curve is compensatory, there is a chance that the "T" curve could straighten out once the lumbar is corrected.

            I have to be honest in saying that, yes, Joe's surgery was as bad as I thought it would be. However, he had to be fused T4-L4, a very invasive surgery. Your son may not need as many levels fused. It also depends on their pain tolerance, the pain management they receive...

            Knowing what to expect and being prepared helped get us through this somewhat sanely. This forum was a lifesaver for me, I learned so much from everyone here. This is a great place for information and support. If you have any other questions, feel free to ask.

            Best wishes,
            Renee

            Comment


            • #21
              Hi Renee,
              The curve at the top of his spine is 46 so I suppose that it is 46T/54L. Is that right? I feel so uninformed after reading your post. Your knowledge on this is so impressive! I don't know if the thoracic curve is structural or compensatory. How would you know the difference? I don't remember Chris' doctor mentioning that. He did say that he wanted to do the surgery sooner rather than later because he didn't want the top curve to go beyond 50 because it would complicate the surgery. I was in too much shock to ask how it would complicate it. We were definitely not expecting to hear that he would need surgery. I felt like I was hit with a brick and couldn't even think straight. He did have him bend over and he was twisting his back and hips and he said that the curve was already somewhat rigid. Does that complicate things? I'm guessing that all this stuff will be talked about at his pre-op appt.

              Thanks for all the information. It's so good to be able to talk to people who are going through or have already gone through the same situation. I find myself on this forum many times throughout the day - probably too many! I have to drag myself away and force myself to clean a bathroom or throw in a load of wash!

              Lori
              Lori

              Mom to Christopher, age 17, Mark, 13, Heather, 10 and Michael, 8
              Chris had surgery with Dr. John Flynn at Children's Hospital of Philadelphia on December 12, 2007. He is fused T4 to L4.
              Dr. Flynn is an AMAZING surgeon!

              Comment


              • #22
                Sometimes children have one major curve and then because the body will not walk around sideways, a second curve develops but it is not a real structural one it is considered compensating. Nicole had one of these but it eventually became a real curve that was too rigid to just straighten out on its own. That is why both of her curves were fused. Did Chris always have both of those curves or did he start off with one main one?
                Melissa
                From Bucks County, Pa., USA

                Mom to Matthew,19, Jessica, 17, and Nicole, 14
                Nicole had surgery with Dr. Dormans on 9/12/07 at Children's Hospital of Phila. She is fused T-2 - L-3

                Comment


                • #23
                  Chris started out with one curve. I guess that means that both of his curves will need to be fused.

                  Thanks for the clarification Melissa.
                  Lori

                  Mom to Christopher, age 17, Mark, 13, Heather, 10 and Michael, 8
                  Chris had surgery with Dr. John Flynn at Children's Hospital of Philadelphia on December 12, 2007. He is fused T4 to L4.
                  Dr. Flynn is an AMAZING surgeon!

                  Comment


                  • #24
                    Well, it all depends on whether the second curve is something that could straighten out naturally when they straighten out the other curve. You definitely want to ask what portion they intend to fuse. Dormans' goal is probably the same as Flynn. Do this once, do it right. They don't want to have to go back in there to do another surgery at a later time. So they may be fusing both areas.
                    Melissa
                    From Bucks County, Pa., USA

                    Mom to Matthew,19, Jessica, 17, and Nicole, 14
                    Nicole had surgery with Dr. Dormans on 9/12/07 at Children's Hospital of Phila. She is fused T-2 - L-3

                    Comment


                    • #25
                      Hi Lori,

                      Structural curves tend to be more rigid, compensatory are somewhat more flexible. I believe the dr. usually determines this by exam & bending x-rays. The more rigid the spine is, the less correction may be achieved. If the surgeon wants to do surgery before the top curve reaches 50, that may be because he is trying to avoid having to fuse any higher in the back than he has to. With anterior approach high in the back is where they may need to deflate a lung as I mentioned before. This is just my guess, at your pre-op ask for clarification on this. Also ask which levels will be fused, have him explain what type of instrumentation he will use...hooks, pedicle screws, etc. and which vertebrae they will be placed on. Will stainless steel or titanium be used? Also what material will be used for fusion? autologous bone graft is taken from the hip or off of the vertebrae (spinous processes) at the time of surgery; allograft or donor bone is obtained from cadavers, cleaned and processed and stored in bone bank, or BMP (bone morphogenetic protein) a synthetic substance of protein found naturally in body that stimulates bone formation. I don't know if BMP is FDA approved for use in children yet, but it seems like a lot of drs. are using it now.

                      Renee

                      Comment


                      • #26
                        Renee,
                        Thank you so much for all of the information on the different types of curves. I am going to start taking notes on all the questions that I need to ask at Chris' pre-op appt. If there are any other questions that you think I should ask, please let me know. I appreciate any input that you or anybody else has.

                        Thanks again,
                        Lori
                        Lori

                        Mom to Christopher, age 17, Mark, 13, Heather, 10 and Michael, 8
                        Chris had surgery with Dr. John Flynn at Children's Hospital of Philadelphia on December 12, 2007. He is fused T4 to L4.
                        Dr. Flynn is an AMAZING surgeon!

                        Comment


                        • #27
                          Hi Lori,

                          I haven't forgotten about you, it's just been a really busy day. I will look for my notes to refresh on what questions I asked. You might want to find out if your son will need to donate blood for his surgery. If so, it would be a good idea to have him start taking a multivitamin now if he isn't already & eat lots of proteins and iron-rich foods. Actually, this is a good idea even if he doesn't need to donate blood.

                          Some questions I asked:

                          An estimate on how much correction surgeon thinks may be achieved
                          About how long will the surgery take?
                          Who will be assisting in the operating room and what will their job be?
                          What type of anesthesia is used?
                          What kind of complications might occur with this surgery? what are the most common? How are they handled?
                          How is the post-op pain managed? What type of medication?
                          Will he be given a stool-softener after surgery? (constipation can be a problem from the meds, more on this later)
                          What is average hospital stay for this type of surgery?
                          Ask if you can speak to patients that have had surgery similar to what your son will have, they can also give you good info on the hospital, staff, etc.
                          If your son is still in school you will want to know how long until he is able to return

                          Also, we were given a hospital tour the week before surgery. The surgical coordinator walked us through and showed us everything from where to check in, o.r. & post-anesthesia monitoring room (this is where we first got to see Joe after surgery) and the patient recovery rooms. She also showed us the type of equipment he would be hooked up to after surgery and also showed us a model of the spine with instrumentation attached. I really appreciated this-since I already knew what to expect and what everything was for, it took away a lot of the shock factor and we were able to immediately focus on other aspects of his care.

                          These are things that come to mind. I will look over my notes and see what other questions I come up with-kids need computer for homework.

                          Take care,
                          Renee
                          Last edited by flowerpower; 10-03-2007, 10:52 AM.

                          Comment


                          • #28
                            My daughter's curves were 61T and 53L, with the lower curve thought to be compensating. She was fused T2-T11 on Aug 22. The doctor made the final call on the morning of surgery to take the chance that her lumbar curve will straighten itself out and not to fuse it (he had told us he may fuse to L3). He based this on visual exams and the bending xrays (her curve straightened to 15 on the bending xrays), he left a 15 degree curve in her corrected thoracic spine to allow them to be even. She was risser 0, premenstral, and still has alot of growing to do. For these reasons, and the fact that the lower curve was very flexible, he (and I) believed it was worth taking the chance that the curve would straighten itself out.

                            She has grown 2 inches at her 4 week postop appt. Her lower curve isn't really a curve any more, it's hard to describe, but it's like an angle of 25 degrees between 2 vertabrae. We go back in 8 weeks, and he has talked about her wearing a boston brace again to force the lumbar back into position. He says its not where he would have liked it to be at this point in time. She looks great, but definitely her waist is off, she has to bend 1 knee to really be straight through the waist.

                            In our case, she always had 2 curves, but the lumbar curve was always less than the thoracic. She was diagnosed about the age of 7 with 18T and 12L. Her lumbar curve was always talked about as being compensatory. You could see when she bent over that the lower curve went away. Her curves rapidly progressed during about the last year, and the lumbar was quickly and suddenly becoming more fixed and "real" from the exam in March to July of this year. I could see the difference when she bent over. When he started talking about fusing to L3, we knew we could no longer put off the surgery. Now, we are praying that this curve continues to even itself out, it definitely is better than when she first left the hospital, but, I don't see it continuing to improve much since then. I've heard, and the doctor says, it can take months to even a year before it will settle into where it's going to be. We didn't have good compliance with the boston brace before (and, I have gotten over beating myself up because I didn't enforce it harder-it's not worth it to yourself to keep doing that, I am quite interested in alternative methods, if it comes to that, and this curve doesn't continue to improve itself.

                            Good luck, nothing in scoliosis is an exact science, and noone can really tell you what would happen in the future, if you should have done more or less, worn the brace exactly as prescribed... It is very frustrating, hopefully you get the best results that you can for your child.
                            Last edited by emma12; 10-03-2007, 10:13 AM.

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                            • #29
                              I pray that your daughter's curve improves or stays the same and that she doesn't need surgery. That must have been a tough decision to make at the time. Unfortunately there is so much we don't know and it is only later when we can look back and know what the answers should be.

                              You have all of our support.
                              Melissa
                              From Bucks County, Pa., USA

                              Mom to Matthew,19, Jessica, 17, and Nicole, 14
                              Nicole had surgery with Dr. Dormans on 9/12/07 at Children's Hospital of Phila. She is fused T-2 - L-3

                              Comment


                              • #30
                                Matjesnic, thanks for the prayers, I agonized over it, and let the doctor make the decision, but, he knew that was what we also wanted. We were all surprised at how rapidly her curves had worsened, and how quickly the lumbar curve was becoming "real". We were originally scheduled for surgery in April, had anyone known that this curve was suddenly going to have a bigger affect, we would have gone ahead with it then, even though none of us were mentally prepared for that. But, it may very well have had the same outcome anyways. You are right in saying there are so many unknowns, and looking back with what you know now that you may have made different choices.

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