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  • Surgery On 11 Year Old

    Hello,

    If anyone can offer advice/opinions on following:


    11 year old daughter diagnosed at 9 years old with a 17 degree thoraciac curve. 17 degree curve went to 35 in 1 year previous doctor suggested nighttime bracing(CHARLESTON BENDING BRACE) I decided against that. Last checkup 11/8/04 with another doctor showed a progression to 43 degrees in 5 months. He suggests a boston brace for 6 months to a year to allow for more growth currently she is a risser 0. He said the brace will hopefully halt further progression but at this point will not correct it. She has a very protruding right shoulder blade, left rib hump, 18 degree pelvic rotation and constant pain in back and pelvis. pelvic sonogram was normal. What are drawbacks of surgery sooner rather then later. Please help I am going out of my mind!!!!!

    Linda

  • #2
    Hi Linda,

    As you probably already know, there are many variables to consider when making a decision about surgery for your child. Things like the rapid progression she seems to have had, the pain/discomfort, the physical appearance, etc. all are good arguments for surgery sooner than later. However, there are things to cover before making that decision. Has she had a full spine MRI to rule out spinal cord or soft tissue problems? Has she tried muscle strengthening techniques to help ease the discomfort? Does she have any other medical issue that might complicate a scoliosis surgery? There are many more questions to ask.

    Have you considered getting another opinion from a different scoliosis specialist? I'm sure you will receive differing opinions, even if surgery is still suggested. The opinions on what kind of surgery and the involved details will be different. Having multiple options to choose from may make your decision harder, but in the long run, you will have a better chance at making the right decision - does that make sense?

    Some drawbacks that I know of include crankshaft problems. This crankshaft problem tends to happen when a posterior-only surgery is done on a child who isn't skeletally mature. After surgery, the child will have a growth spurt and the front (anterior) part of the spine grows but the back (posterior) part doesn't, causing the spine to twist/rotate. This can lead to multiple issues later on. Also, I know of one mom who had scoliosis surgery at 11yrs old herself. She has a much shorter trunk than her siblings. She believes that her trunk growth was impacted by the early fusion surgery.

    Remember that scoliosis surgery is rarely an emergency decision. Use this time to gather information, get other opinions, help her stay as healthy as possible, etc. You can make a decision about surgery when the details and surgeon are right for her, and when the time is right for her. Multiple opinions doesn't mean that only one procedure or method is right for her. Each patient is unique and must be treated that way. This is one area where parenting should come with a user's manual - making the decision for surgery is not easy at all.

    Good luck - Hope I haven't confused you more.
    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/

    Comment


    • #3
      Carmell,

      Thank you for your reply. You have not confused me more at all. In response to some questions we have gone to physical therapy for 6 months 3 times a week, this made her stronger and more flexible but not much difference in the pain department. She has not had an mri I am assuming that would come later however I will bring it up at next visit. Her surgeon said she is a great canditate for the less invasive side entry surgery, however there is a problem with bone density that must be addressed before the less invasive sirgery becomes an option. She is going to Manhattan for bone density study on December 8. Other then scoliosis related health issues and her very small stature, which is 52 inches in height and 58lbs in weight she has no known medical conditions. I am taking your advice in absorbing all the info I can both online and in some wonderful books I purchased at time of her diagnosis.
      Linda

      Comment


      • #4
        Hi Linda...

        I totally agree with Carmell. But, I'd also encourage you to get your daughter into a brace ASAP. While it seems that there is a good chance your daughter will have to have surgery, there is a small chance that she might be able to avoid surgery. And, even if she has to have surgery, the brace may keep her curve from becoming too large.

        Best of luck.

        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


        • #5
          LINDA,

          My daughter has already beem measured for the boston brace and I am patiently waiting for it to be made. Im sure insurance issues arent helping. It has been about 2 weeks so I should hear soon. She must wear it for 23 hours a day and I am really hoping she can handle it since she does have lower left abdominal pain from the scoliosis. I am hoping the brace may actually help that.


          Thank you and God bless,
          Linda

          Comment


          • #6
            Hi Linda...

            I'm surprised to hear you say that your daughter has lower left abdominal pain from scoliosis. I don't think I've ever heard of that. I could be wrong, but I've communicated with hundreds of scoliosis patients/parents. Is the doctor sure that it's from scoliosis?

            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


            • #7
              Linda,

              The doctor did not tell me it was from the scoliosis. That was my assumption since pelvic and abdominal sonogram were both normal. My theory which I guess is now wrong was that with everything rotating and being crooked that pain in that area was a given. Her pain is under the left rib hump. and sometimes shoots down to the lower left pelvic area.

              Many thanks,
              Linda

              Comment


              • #8
                Hi...

                Did your doctor mention that your daughter's curve is unusual? Most thoracic curves are right curves, so the rib hump is on the right. I'd definitely encourage you to push for an MRI, as left thoracic curves, especially in girls, are usually an indication of other things going on.

                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


                • #9
                  Hi Linda,

                  I agree with Linda R. - your daughter's symptoms and physical appearance sound like she needs further examination to make sure she is getting the right care. My daugher (age 18) has a typical adolescent idiopathic scoliosis. Her curve is a right lumbar curve with some rotation of the upper spine. She has discomfort in the upper part of her back, between her shoulderblades. When she keeps up with her upper body exercises, she has less pain/discomfort. For her, the pain is muscle related for sure.

                  My son was born with severe congenital scoliosis - a left curve. His rib hump is on the left side (left shoulderblade). The right side of his body is shorter and concave. Did the doc say if your daughter has any malformations of the bone structure of her spine? Or is her bone structure normal, albeit curved? An MRI would be a good way to make sure there isn't something else contributing to the scoliosis. A few things come to mind when you mentioned the shooting pain coming from under her rib hump. Something in her spinal cord (like a syrinx or something tethering the cord) could be causing a disruption in the nerves of her spinal cord, leading to the shooting-type pains. Or, there could be a pinched nerve from the seemingly rapid progression of the scoliosis. It sounds like soft tissue problems, regardless. Only a doc can tell you for sure.

                  Has anyone suggested having her kidneys examined? You said she had an abdominal sonogram, but I wonder how much of the renal system they actually focused on. Your description of her sounds like this is something they would like to rule out as an issue for her. Some patients with chronic (but minor) renal/kidney issues are small in stature. My Braydon is 9yrs old and is 48 inches tall and weighs a whopping 45 pounds.

                  I wish you the best in finding out how to help your daughter. Please keep us posted.
                  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/

                  Comment


                  • #10
                    Linda and Carmell,

                    First off I want to thank you both so much for all the interest, time and knowledge you have shared with me. My daughters kidneys were closely examined by a pediatric urologist, what I find strange is that the pain typically is in the morning hours upon rising from bed. There are normal bowel movements I would say 2-3 within a 1 hour period upon waking. . Usually at that time the pain decreases. We are still in the process of trying to find out what this is, I am leaning toward possible IBS which I suffer from as well. My other daughter had a very small stature as well with her first period coming at age 15 which is why I worry so much about Amanda, when I think of all the growing she has left it scares me. My older daughter is still growing at age 16. I misinformed you earlier, the right thoracic curve is located between T5-L1, the rib hump is a slight one on the right side, not the left. I am so confused but my daughter just set me straight on that. I look at her back and I cant believe what I see. I will definetely request MRI at next visit as that seems quite important.
                    Many many thanks,
                    Linda

                    Comment


                    • #11
                      Linda,

                      Your latest post rang a loud bell in my head! Constipation can be a problem for some kids, and sometimes we never know about it until the problem gets to be huge. Braydon is prone to constipation. He takes laxatives daily to empty his bowels. His problem is from the birth defects and the tethered cord which damaged some of the nerves in the bladder/bowel area. A person can be constipated and still have a daily bowel movement. Are her stools soft or very firm? If she's having 2-3 before the day gets started, it seems she would need help to empty once a day, completely. A pediatric GI doc would be able to help you with that. If she's had a recent back xray, you can have the ped. or GI doc look to see if she's impacted at all. Getting her "cleaned out" my help with that pain you mentioned.

                      Braydon has a neurogenic bladder, but is fully continent. When he's constipated, even slightly, it can trigger painful bladder spasms. The problems with him being constipated can be numerous, so keeping him "moving" is critical.

                      I'm glad her kidneys were checked out and are okay. Hopefully you will begin finding answers soon! Keep us posted.
                      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/

                      Comment


                      • #12
                        carmell,

                        Thanks once again!!!! I am taking in all your advice, jotting notes etc. I will keep you updated. Pediatric GI doc will be my next step.

                        Linda

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