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  • New here, my daughter having surgery soon!

    Hi:
    last August my daughter was first diagnosed with a 30 degree lumbar curve. 2 braces and 8 months later her lumbar is around 50, and she has a thoracic of around 50 plus another curve near her neck. The dr. started talking about surgery 2 months ago and said we shouldn't wait more than 2-3 months. So the surgery is scheduled for end of july and I'm feeling very rushed and a little paniced. For one--if you look at my daughter, you can't tell that anything is wrong. her posture even looks good. She has no back pain. I know they say history shows it'll get worse--it's just so hard to put her through the risk, when she looks and feels fine.

    Also I made things more confusing by taking her to an osteopath. She passionately believes that she can reduce my daughter's curve. She uses this vibration therapy that she says untethers the muscles that are causing the spine to curve. She really believes that she can help--which makes me wonder if we should give it a try. On the other hand, is the Dr. who is saying that delaying the surgery can cause her back to get worse--so the correction wouldn't be as great and the surgery could be more difficult.

    Has anyone here tried an osteopath before surgery? heard anything about that vibration therapy?

    Julie

  • #2
    Hi Julie...

    If the osteopath actually has even one true life example of straightening curves as large as your daughters, it might be worthwhile. I would definitely be leery of claims without proof. I've never seen proof of anyone helped by the vibration method, it may be worth some research on your part.

    You don't mention your daughter's age or her Risser score. If she's still growing, a 50 degree curve carries a fairly high risk factor for increasing. While a small increase probably won't make much different from a surgical standpoint, a large increase can make surgery more difficult.

    Best of luck with your decision.

    Regards,
    Linda
    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

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    • #3
      Where "near her neck" is the other curve? I assume it is actually below her neck, as a curve in her nect would make her neck curved. My daughter's upper curve is below her neck, but goes basically under her ribs on the right side. It doesn't start curving until right below her neck. Kris

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      • #4
        she's 13 but hasn't had her period yet. I guess i don't know what her rissor score is...

        She has 3 curves, lumbar, very low, thoracis and then one above that just below her neck. The dr. showed me that her neck does look crooked, but it isn't noticable.

        The osteopath told me that she did correct a little girls curve, the girl was about 4 years old.

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        • #5
          Hi Julie...

          If the osteopath can show you x-rays of before and after, and you can see that the child had a large curve, than you might want to consider. Something you should know, however, is that the majority of infants born with scoliosis have their curves resolve on their own.

          You might want to ask the osteopath how long it will take to notice any improvement. You don't have a lot of time to waste. Whatever you decide, be sure to go back to the surgeon every 3-6 months so that he can watch her curves.

          Regards,
          Linda
          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


          • #6
            We highly recommend using some of that critical time gathering more surgical opinions. You will undoubtedly become even more confused as you find wide variations in the recommended treatment and surgical procedures used, but you will also feel that you have done enough research to make your best possible sound judgement. We have found a difference of opinions concerning the type of grafting material, type of instrumention, the upper and lower levels of proposed fusion, and the necessity of having surgery at all. Good luck and best wishes.
            Mark & Jane, Parents of Lisa
            Daughter 15 years old
            Posterior surgery was in October, 2005, with Dr. Paul Sponseller at Johns Hopkins. Fused T2-L2 w/4 rib thoracoplasty. Rib and local autograft. All pedicle screw and stainless construct.
            Before: PT – 33, MT – 63, L – 32, kyphosis – 46.
            After: PT – 7, MT – 4, L – 15, kyphosis – 32.

            Comment


            • #7
              Snoogs - you mentioned your daughter hasn't received her period yet. My daughter was diagnosed at 11 but she already had her period for about six months or so. Her ortho said that that was a good sign as she was in her next growth stage. The following mentions menstruation from a scoliosis article I read.

              ***The progression of a curve is dependent on a number of factors. Generally, curves that present at a younger age and curves that are larger tend to progress more rapidly. Children who present with a small curve at an older age tend to have less progression of the curve. Scoliosis progresses most rapidly during the years of active growth, with the rate of progression of a curve much diminished once a child begins menstruation or approaches physical maturity.***

              My daughter's curve was 18 first diagnosed and would go up and down - the highest was 28 so she was not a candidate for surgery. It is now back in the upper teens. I would imagine since your daughter hasn't received her period, and her curves are high at her age, that the curves would progress. I know it's so confusing and stressful but go for a second opinion to make you feel better. I would not consider being treated by the osteopath. Good luck with your daughter. LYNN
              1981 Surgery with Harrington Rod; fused from T2 to L3 - Dr.Keim (at 26 years old)
              2000 Partial Rod Removal
              2001 Right Scapular Resection
              12/07/2010 Surgical stabilization L3 through sacrum with revision harrington rod instrumentation, interbody fusion and pre-sacral fusion L5-S1 - Dr. Boachie (at 56 years old)
              06/11/14 - Posterior cervical fusion C3 - T3 (Mountaineer System) due to severely arthritic joints - Dr. Patrick O'Leary (at age 59)

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              • #8
                ProudParents, I too have researched until I feel like I could perform the surgery myself, yeah right. I wonder if you have any information I missed. I am interested in bone grafting choices, type of instrumentation, etc., too. I know most of what is written/discussed regarding what is available, but I want to know what will be recommended in my daughter's case. I may find out at pre-opt, but I wonder if I can get more info before that. How is your search going? I read David Wolpert's book, and recently ordered the new edition. Also, I agree that Julie needs to consider how the future would be without surgery. That, and the fact that the higher the curve that you start with, the higher the curve you will end up with after surgery, most likely. My daughter is scheduled for surgery July 18. Kris

                Comment


                • #9
                  Yes, Kris, we know what you mean about performing the surgery ourselves, but the guy at Home Depot never heard of pedicle screws, so we will have to leave it to the professionals.

                  Our search is progressing well, we suppose. We are learning everyday. Our next appointment is mid-July. We have spent a great deal of time researching the subject, but certainly not an inordinate amount, considering the seriousness of the surgery. Unfortunately, we have only scratched the surface when compared to the knowledge of the fine doctors who we have met so far. In the end, we as a family, can only make the best decision possible based on that limited knowledge. It is confusing when, all too often, research reveals conflicting data as indicated in these two statements taken from medical studies we have read: 1.) Autograft is the gold standard and assures the highest fusion rates; 2.) There is no difference in the fusion rates between autograft and allograft, therefore it is not necessary to risk the complications of additional hip surgery. Who’s right? We aren’t qualified to answer that.

                  When we went for our second opinion, we were under the impression that the surgical procedures would be similar and we would be choosing the surgeon based primarily on our comfort level, the doctor’s experience, and possible references. That was not entirely the case. We have seen renowned doctors and their recommendations have varied as follows: 1.) Fuse T4 - T12, use autograft from the hip, titanium rods, nine pedicle screws and some wire. 2.) Fuse T2 – L3, use freeze dried allograft, stainless steel rods, 28 pedicles screws. Now that’s a big difference of opinions! It was explained to us by one doctor, that doctors tend to base their opinion on what has worked successfully for them in the past and stick with it.

                  Well, we wish you the best on the upcoming surgery.
                  Mark & Jane, Parents of Lisa
                  Daughter 15 years old
                  Posterior surgery was in October, 2005, with Dr. Paul Sponseller at Johns Hopkins. Fused T2-L2 w/4 rib thoracoplasty. Rib and local autograft. All pedicle screw and stainless construct.
                  Before: PT – 33, MT – 63, L – 32, kyphosis – 46.
                  After: PT – 7, MT – 4, L – 15, kyphosis – 32.

                  Comment


                  • #10
                    Hi Mark & Jane...

                    Just wanted to say that you sound like you've done a good job of research. Unfortunately, as you know, there's no way of ever knowing if you're choosing the right doctor. I think that if you've checked references, and know that the surgeon does a lot of scoliosis surgeries, you have to let them do what they think is best.

                    Regards,
                    Linda
                    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


                    • #11
                      ProudParents, do you have a surgery date yet? It may take a while to wait. We had a date with one doctor while we researched and then changed to Shriners immediately when our daughter miraculously chose Shriners during her visit to Shriners. Even then, we had to wait and are finally approaching that surgery date. We started plans to actually have surgery around Feb, 2005, I think. Sugery is July 18. Maybe your daughter's curve is not progressing as our daughter's was, though. Her curve changed about 3-4 degrees per month during a 6 week period, so we are aggressive about getting the surgery done. Thanks for the info. Also, you have a good point Linda, to a certain extent we have to trust the final details to the surgeon. I notice Dawn is having to let the surgeon decide during surgery exactly where to get the bone. Some of the decision is probably made after the doctor can judge the condition of the bones in the body and whether they will fuse as well as from the bone bank, etc. The types and sizes of hardware are also dependent on the flexibility and size of the spine and child. In my case, I know that one of 2 doctors will perform the surgery at Shriners. I had many doctors in on my youngest son's delivery, as the doctors changed shifts, so I will trust whoever ends up on the schedule at the time. At least I know I have 2 of the 3 best surgeons in the western Carolinas performing the surgery. I would like to know as much as possible about the choices that may be made before the last 2 days of pre-opt, when I will feel more pressured to understand and possibly make final decisions. Kris

                      Comment


                      • #12
                        No, Kris, we don’t have a surgery date yet nor have we decided on what doctor to use as we still have one more appointment scheduled in July. Lisa’s curve is progressing, so unfortunately avoiding surgery is becoming less of a viable option. Again, we wish your daughter the best. Shriner’s has a great reputation so you should do just fine.

                        In the end, our daughter will be in the doc’s hands, but until then we have more work to do ourselves. References and experience will weigh heavily on our decision, but we also rely on the surgeon’s explanations as to why he chooses a certain level of fusion, or uses a certain type of instrumentation, etc. The explanation that is the most logical, and makes us the most comfortable wins. At some point a little luck is involved, because as Linda once posted on a previous thread, “Even good surgeons have bad days.” A successful friend of ours once told us that the harder he works the luckier he gets. Hopefully our efforts will give us a little extra luck.
                        Mark & Jane, Parents of Lisa
                        Daughter 15 years old
                        Posterior surgery was in October, 2005, with Dr. Paul Sponseller at Johns Hopkins. Fused T2-L2 w/4 rib thoracoplasty. Rib and local autograft. All pedicle screw and stainless construct.
                        Before: PT – 33, MT – 63, L – 32, kyphosis – 46.
                        After: PT – 7, MT – 4, L – 15, kyphosis – 32.

                        Comment


                        • #13
                          Just adding my .02¢ here...

                          Scoliosis surgery is RARELY an emergency situation. You have time to research and find out what the best plan for your child is. You need to consider multiple things - i.e., timing of the surgery or treatment, age of the child, Risser score, if there is pain involved, rotation of the curves, balance of the neck and pelvis, etc. These things must be considered. If a surgeon treats patients all the same (suggesting that ONLY because her curve is over 50 degrees so now she needs surgery) that probably isn't the surgeon you want treating your child. No two scoliosis cases are the same, and each must be treated that way. Its important to have 100% confidence in the surgeon and their recommendations.

                          Ask the surgeon questions that are specific to your daughter. Find out if he has other patients who have had similar surgeries. Ask if these patients have had complications due to adolescent growth AFTER surgery. Ask about things that will be directly involved in her situation.

                          Good luck and I hope all goes well.
                          Carmell
                          mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

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