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13 year old daughter with a 44 degree lumbar curve

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  • #46
    Hi Cool,

    It sounds like you have left no stone unturned in your daughter's care…I am sorry she will need surgery. I do think you have every right to ask any and all questions that you want answers to. My experience is I have gotten very brief answers to any e-mailed questions to doctors, if answers at all. Would it be possible to have another appointment and pose these questions? That way you may have a dialogue that can be more informative.

    Best of luck, and please do let us know how things are going.
    Gayle, age 50
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

    also mom of Torrey, 12 y/o son, 16* T, stable

    Comment


    • #47
      coolblue,

      Glad you checked in. Very sorry about the progression.

      I think if you make a list of questions for the surgeon he or his nurse will respond. I am guessing there will be very little he says your daughter can't do after she recovers from surgery and the fusion is solid. I am further guessing she will likely be restricted from certain activities for about a year, maybe less. He will tell you.

      Your daughter and your family will get through this and move on. It is ~6.5 and ~5 years post surgery for my girls and the subject never comes up. They have moved past this and your daughter will also.

      Best regards,
      Sharon
      Sharon, mother of identical twin girls with scoliosis

      No island of sanity.

      Question: What do you call alternative medicine that works?
      Answer: Medicine


      "We are all African."

      Comment


      • #48
        Cool

        I personally would ask about the robot assist just out of interest....This is a valuable tool.
        http://en.wikipedia.org/wiki/Mazor_Robotics
        http://mazorrobotics.com/the

        Her plumb line and shoulder heights are way off in the October x-ray.....There is quite a bit of difference between both x-rays.

        I really don’t think you can dodge this much longer and agree with the cervical issues and shifting. Her plumb is now way off.

        If I had to guess on gained height, it would be around 2 inches....and end up with a substantial correction. Rib humps are usually improved quite a bit after surgery.

        Ed
        49 yr old male, now 63, the new 64...
        Pre surgery curves T70,L70
        ALIF/PSA T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
        Dr Brett Menmuir St Marys Hospital Reno,Nevada

        Bending and twisting pics after full fusion
        http://www.scoliosis.org/forum/showt...on.&highlight=

        My x-rays
        http://www.scoliosis.org/forum/attac...2&d=1228779214

        http://www.scoliosis.org/forum/attac...3&d=1228779258

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        • #49
          Thank you Gayle, Ed and Sharon. Have sent the list of questions to the Doc. Surgery set for 3rd of Nov. Fingers Crossed.

          Can anyone let me know where to find a checklist for both pre-op and and post-op in the case of adolescent surgery (esp for girls). Am also looking for what to expect kind of a guide.

          Any past posts would be of great help. Shall keep the group posted wrt developements.

          Meanwhile how does one have this post moved to Surgical and its thread title suitably modified. Any suggestions.

          Best regards,

          coolblue

          Comment


          • #50
            Cool, I don’t know what kind of checklist your looking for. I have attached a prep list....

            Ask if you have any questions....

            For example, Grabbers sometimes are provided by insurance companies here in the US. If not, you can save the money and use Barbeque tongs.

            I'm not fond of using step stools on medications, this is a great way to promote a fall. If a patient cant reach something, so be it. It can wait. Do anything to prevent a fall.

            Hope this helps....

            Ed
            Attached Files
            49 yr old male, now 63, the new 64...
            Pre surgery curves T70,L70
            ALIF/PSA T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
            Dr Brett Menmuir St Marys Hospital Reno,Nevada

            Bending and twisting pics after full fusion
            http://www.scoliosis.org/forum/showt...on.&highlight=

            My x-rays
            http://www.scoliosis.org/forum/attac...2&d=1228779214

            http://www.scoliosis.org/forum/attac...3&d=1228779258

            Comment


            • #51
              Wishing your daughter the best on her upcoming surgery. My only last thought is: be prepared for something to go wrong, in my experience in talking with folks, do not be surprised. Most everything is fixable as it just is a bump in the road. We all hope for a very smooth course with surgery because of all of the prep that we do....just be ready for a bump in the road. With my last surgery it was a pulmonary embolism, certainly scary when it happened but really minor in the scheme of things.

              You sound like such a caring, awesome parent. I wish your daughter fast healing and you, peace.

              Susan
              Last edited by susancook; 10-19-2014, 07:46 PM.
              Adult Onset Degen Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Sev disc degen T & L stenosis

              2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
              2014: Hernia @ ALIF repaired; Emergency screw removal SCI T4,5 sec to PJK
              2015: Rev Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
              2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone
              2018: Removal L4,5 screw
              2021: Removal T1 screw & rod

              Comment


              • #52
                Surgery Update

                My daughter's had her surgery today. She's fused T4 - L4. Doctor seemed very happy with the correction. Currently she is in the post operative ward and loopy with the sedatives. We hope to have her back in our room tomorrow. Relieved that it all went off well but it is heart wrenching to see your little girl in so much pain. Gingers crossed she will get over this soon and not remember these painful moments later on.

                Thanks again to all the members on this support group and those with whom I have corresponded offline. The journey was much more manageable thanks to your support and inputs.

                Shall keep you updated on the progress.

                Comment


                • #53
                  Glad all is well. What a relief to have her through surgery. The first days are rough but children are remarkable.
                  T10-pelvis fusion 12/08
                  C5,6,7 fusion 9/10
                  T2--T10 fusion 2/11
                  C 4-5 fusion 11/14
                  Right scapulectomy 6/15
                  Right pectoralis major muscle transfer to scapula
                  To replace the action of Serratus Anterior muscle 3/16
                  Broken neck 9/28/2018
                  Emergency surgery posterior fusion C4- T3
                  Repeated 11/2018 because rods pulled apart added T2 fusion
                  Removal of partial right thoracic hardware 1/2020
                  Removal and replacement of C4-T10 hardware with C7 and T 1
                  Osteotomy

                  Comment


                  • #54
                    Glad to hear the surgery went well! My daughter's surgeries start next week, and she'll likely be fused at the same levels, so I'm glad to know someone else whose daughter is going through the same fusion. Hope your daughter recuperates quickly!
                    Karen

                    Mom to Girl Child diagnosed with 84* and 91* curves in Aug 2014 at age 11.5.
                    Surgeries scheduled for Nov 10, 14, and 17.

                    Comment


                    • #55
                      Thanks for keeping us updated. Glad that it went well. Keeping you guys in my thoughts and prayers. Big hugs =)
                      Hugs,

                      hdsluckygirl
                      hdsluckygirl@gmail.com

                      Comment


                      • #56
                        We are back in the room. Day 2 was very rough. They had stopped the morphine because if its nauseating side effect. So when my daughter was not writhing in pain she was uncomfortable with nausea. Thankfully things got better as the day progressed and she was feeling much better after they transferred her in the room yesterday.

                        Yesterday, she could turn on any side as well as sleep on her back. Today they would try making her stand up and walk in the room.

                        Our room is more like a suite so the entire family is with her. During the day my parents too drop by ( they are staying at a service apartment close by). Hopefully things would get better from now on.

                        Comment


                        • #57
                          coolblue! Thanks for that update. It sounds like she is making quick progress!

                          I think you will be amazed how fast the recovery is. Your daughter is a star!
                          Sharon, mother of identical twin girls with scoliosis

                          No island of sanity.

                          Question: What do you call alternative medicine that works?
                          Answer: Medicine


                          "We are all African."

                          Comment


                          • #58
                            So glad that it went well, and she is in a room with family. You sound like you are holding up really well too mom. Give yourself a pat on the back. Big hugs!!!
                            Hugs,

                            hdsluckygirl
                            hdsluckygirl@gmail.com

                            Comment


                            • #59
                              Originally posted by hdsluckygirl13 View Post
                              So glad that it went well, and she is in a room with family. You sound like you are holding up really well too mom. Give yourself a pat on the back. Big hugs!!!
                              Hey Crystal,
                              Thanks for your good wishes. Actually I am the dad but moms been holding up great. Shall give her a hug a desired. .

                              My daughter is feeling constipated today. Any suggestions would be welcome.

                              Coolblue

                              Comment


                              • #60
                                I don't know about kids, but I think most adults are put on this regimen as soon as they start swallowing food and medications. "Mush and push" is the mantra. An over-the-counter senna combined with docusate sodium product will do the trick. Also, tell her to let her bowel do the pushing. Tell her to bring a book or other distraction to the bathroom, and just let nature take it's course. Pushing usually makes things worse.
                                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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