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  • what should i ask

    hi i am mum to 5 children and jodie our 6 year old was diagnosed with severe congenital scholiosis and rib hump in march. we saw the consultant last month and he says she needs to have a plate put on her spine and a wire attatched to it to see if they can pull the ribs back in place. i see that everyone on this site knows the degree of the curve but we didnt get told what jodie's curve measured at. what should i ask the consultant next time we see him. also jodie's school is 600 meters away and she cannot walk to school without being in pain and the teacher reports that jodie is often in pain at school and cannot complete a physical education class is this common with jodie's problem.
    many thanks
    gill

  • #2
    Feeling Rather Despondant That I Have Had No Response

    Originally posted by gillste
    hi i am mum to 5 children and jodie our 6 year old was diagnosed with severe congenital scholiosis and rib hump in march. we saw the consultant last month and he says she needs to have a plate put on her spine and a wire attatched to it to see if they can pull the ribs back in place. i see that everyone on this site knows the degree of the curve but we didnt get told what jodie's curve measured at. what should i ask the consultant next time we see him. also jodie's school is 600 meters away and she cannot walk to school without being in pain and the teacher reports that jodie is often in pain at school and cannot complete a physical education class is this common with jodie's problem.
    many thanks
    gill
    FEELING RATHER DESPONDANT THAT I HAVE HAD NO REPLIES FROM ANYONE SURELY SOME ONE CAN GIVE ME SOME ADVICE

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    • #3
      Hi Gill
      I'm so sorry you haven't had any replies - that's unusual on this site which is very supportive and helpful normally. I'm afraid I don't have any advice to offer - just some sympathy - as my daughter's problems are quite different.
      The only thing I can suggest is that you re-post in the 'other forms of scoliosis' section as this is in the adolescent section where problems and experience are likely to be different.
      Wishing you all the best.
      Lorrie

      Comment


      • #4
        Hi Gill,

        My son has congenital scoliosis, diagnosed when he was 5 years old. He has never had much, if any, pain from the scoliosis. He had a bit of pain after he stopped wearing his brace - from his back muscles tiring too easily after being somewhat atrophied from the brace wearing. But that went away after a few weeks. He also had some brief pain last summer & fall after his back muscles/nerves got strained/stressed on two different occasions. Massages really helped both those times. I'm sorry your daughter has so much daily pain. How awful for her & you as well. I'm sure her orthopedic surgeon will try to figure out the source of the pain & hopefully the treatment plan will address it & try to alleviate it.

        It's so awful when your child is hurting. I do know what that's like. I hope your daughter feels better very soon & that her surgery fixes this problem!

        Laurie
        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.

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        • #5
          Hi Gill,

          Sorry for not responding but I felt that I didn't have any kind of experience with what you were saying. I don't know what that is: a plate and a wire.

          Where do you live? Have you seen an orthopedic? They should be able to tell you the degrees of the curve? Can you get more than one opinion?

          I wish you the best. Keep us informed.
          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


          • #6
            plate and wire

            hi thanks to the replies we are based in the uk, when we saw the consulant he forgot to bring the xray report with him and the wire is to hopefully pull the ribs back into place to avoid having some removed and the plate attaches to the spine/vertebrae and will gradually pull jodie's spine back to a more natural position so we have been told, but the consultant also said that jodie would need a further operation when she had gone through puberty as this would be her last growth cycle.
            many thanks again for the replies
            gill

            Comment


            • #7
              Gill,
              Has your daughter had a full spine MRI to make sure there are no other abnormalities along with the congenital scoliosis?

              Comment


              • #8
                Hi Gill
                Wherabouts in the UK are you? We're in Northumberland and attend the Freeman Hospital in Newcastle.
                Lorrie

                Comment


                • #9
                  mri scan

                  we got told on the 16th june that jodie would be sent for within 6 weeks for a mri scan we hav'nt received an appointment as yet but i am going to chase them tomorrow to see how things are going. we are in bolton lancashire.
                  thanks very much
                  gill

                  Comment


                  • #10
                    Welcome Gill,

                    I agree with the others. It sounds like Jodie needs an MRI to determine if there is an underlying cause to the curve of the spine, and for the pain. Being 6yrs old and not able to walk distances is not typical. I hope you get word about the MRI scan soon. Once the scan is done, request that a PEDIATRIC neuroSUGEON reads the scan, not just the radiologist's report. You want to make sure there is nothing going on that will need medical attention before addressing the scoliosis.

                    My son, Braydon, is now 12yrs old. He was born with congenital scoliosis. He had fusion surgery at age 11months old and VEPTR surgery at age 6yrs old. I'd be happy to share his experiences with you, if you'd like. My email is boulderfam@hotmail.com

                    Braydon also had a tethered spinal cord. The only time he has back pain that isn't associated with surgery is when the cord has been tethered (twice in his life). Back pain is not common with "just" scoliosis, even congenital malformations. Something in the soft tissue is causing the pain. The weakness would be an indication that something is preventing the nerves in the spine from fully functioning. An MRI is very important right now. The rib hump can be addressed later (Braydon also has a rib hump on his left side).

                    My best to you.
                    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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                    • #11
                      Hi Gill,

                      I just read your post and realized that the stapling procedure would not be of benefit to your daughter.

                      Stapling is used on children with Idiopathic Scoliosis and from my understanding of the procedure cannot help children with congenital scoliosis.

                      I wish I could be of more help but I'm not familiar with what you are facing but I'm sure someone who has much much more expertise will chime in soon.

                      You've found a great place for support.

                      Amanda
                      Amanda

                      Mom to Lorena 7 yrs old
                      Diagnosed 8/2005 ~ 26 Degree Curve
                      Progressed to 42 Degrees by Dec 05
                      Milwakee Brace 1/16/06 - 6/26/06
                      Vertebral Stapling on 6/26/06 @ Shriners in Philadelphia
                      26 Degree Post Op Curve
                      Last X-Rays December 07 ~ 26 Degree Curve
                      Email: domingo_amandapompa@msn.com
                      Website: www.vertebralstapling.com
                      YouTube Video: http://www.youtube.com/watch?v=n6GmX3K7FIs

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