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  • Seeing Surgeon Tomorrow

    We are going to see Dr. Jarvis at CHEO tomorrow to discuss surgery for Esme. We are still hoping she won't need it but expect he will recommend it.

    Esme has prepared a long list of questions to ask him - like what kind of rods he will use, what type of anaesthetic is used, etc., how long before she can do normal activities again, etc. A very good list from a 13 year old.

    Anyway, not looking forward to this appointment but it must be done.......

    Ruth
    Ruth, 50 years old (s-shaped 30 degree scoliosis) with degenerative disc disease, married to Mike. Mother to two children - Son 18 and daughter 14. Both have idiopathic scoliosis. Son (T38, L29) has not needed surgery to date. Daughter (March 08 - T62, L63).

  • #2
    Good luck today! I hope all goes well. Tell Esme I am proud of her for being so prepared and compiling such a great list of questions for her Dr. It's good she is taking such an active part in her medical treatment.
    Alicia
    Geish
    47 years old, dx at 13
    +30* to the right, +60* to the left, +30* to the right
    Surgery 12-13-07 - fusion from T4 to sacrum.


    http://www.scoliosis.org/forum/attac...tachmentid=267 Pre surgery
    http://www.scoliosis.org/forum/attac...tachmentid=268 Post surgery
    http://i156.photobucket.com/albums/t...s/DSC01091.jpg Xray from the side
    http://i156.photobucket.com/albums/t...1089-1-1-1.jpg Xray from the back

    Comment


    • #3
      Ruth, Good luck with the appointment! I'm thinking of Esme... Let us know how it goes.
      daughter, 12, diagnosed 8/07 with 19T/13L
      -Braced in spinecor 10/07 - 8/12 with excellent in brace correction and stable/slightly decreased out of brace curves.
      -Introduced Providence brace as adjunct at night in 11/2011 in anticipation of growth spurt. Curves still stable.
      -Currently in Boston Brace. Growth spurt is here and curves (and rotation) have increased to 23T/17L

      Comment


      • #4
        Same here. Ruth. I'll be thinking of you both tomorrow. And I was just thinking of how pro-active Esme is being-- and wondered if it would be kind of fun for her to keep a journal of her appointments and what she thought, and how it's all going in between visits, etc. ... and it could be a place where she could jot down questions for "next time" -- anyway, just a thought. I know my girls always thought those blank journals with neat covers were a fun thing... Or maybe she already is doing something like that. Take care!
        71 and plugging along... but having some problems
        2007 52° w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
        5/4/07 posterior fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
        Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

        Corrected to 15°
        CMT (type 2) DX in 2014, progressing
        10/2018 x-rays - spondylolisthesis at L4/L5 - Dr. DeWald is monitoring

        Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

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        • #5
          13 Y/o !

          I wish I was as smart as the 13 Y/O youngsters this day and age! I hope all goes well for y'all, sounds to me like she is a real trooper and is going to handle everything very well! I bet you are totally proud of her.
          Good Luck! &
          God Bless,
          Chris

          Comment


          • #6
            Sounds like Esme is facing this head-on--what a grown-up thing to do! I'm impressed. I know you'll keep us posted during this really challenging time. Looking forward to hearing the outcome of your appointment, and thinking of you both.

            Mary Ellen

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            • #7
              Well, surprise surprise the doctor was not pushing for surgery - he is the head of orthopaedics at CHEO. He said that since her curves are balanced he would not necessarily recommend it. I was floored. He also felt that her curves might not get a lot worse since her period has started and the major growth spurt has already occurred.

              We asked for a pulmonary test and he agreed this would be a good idea. We will also be having some bending x-rays done and a traction x-ray - probably tomorrow since we have to be back at the hospital for our son for a different issue.

              Esme asked all her questions and the doctor answered them. She is writing her scoliosis story and is up to about three pages now.

              I have mixed feelings about this. I know that many doctors would recommend surgery and hope that the doctor isn't telling us what he thinks we want to hear although I really highly doubt that. Besides he said he wouldn't recommend surgery before we said anything or started asking our many, many questions.

              Ruth
              Ruth, 50 years old (s-shaped 30 degree scoliosis) with degenerative disc disease, married to Mike. Mother to two children - Son 18 and daughter 14. Both have idiopathic scoliosis. Son (T38, L29) has not needed surgery to date. Daughter (March 08 - T62, L63).

              Comment


              • #8
                Woohoo, Ruth!!!

                I know you don't have a final answer yet, but doesn't this give you a little breathing room at least?

                Or perhaps it just drags out this painful period of not knowing.....will you get another opinion? I know this must be difficult when you waited so long to get the appointment in the first place.

                Mary Ellen

                Comment


                • #9
                  Mary Ellen:

                  Not sure what to think really. In my heart I am thinking Esme needs the surgery but this doctor is a senior orthopaedic surgeon and he didn't seem to be in any rush at all to do surgery.

                  We have Dr. Rivard's opinion from last month which is to do surgery. We have another younger CHEO doctor's opinion which was to do surgery last February.

                  Ruth
                  Ruth, 50 years old (s-shaped 30 degree scoliosis) with degenerative disc disease, married to Mike. Mother to two children - Son 18 and daughter 14. Both have idiopathic scoliosis. Son (T38, L29) has not needed surgery to date. Daughter (March 08 - T62, L63).

                  Comment


                  • #10
                    Gee Ruth - that's a tough call for you and Esme! Wow! I can't believe he doesn't think it necessary? Maybe there is something in that her curves are balanced and so therefore not causing any problems. But, what about the old saying that once it goes over 50 degrees curves will continue to progress into adulthood? That would be my major concern.

                    Hope everything turns out okay in the long run - haven't been on the forums much as so busy with back to work and the new pup.

                    Cyber hugs
                    Del
                    Elysia 16 in Feb 2010
                    Sydney - Australia
                    Feb 2008 Fused T5-L1 and 5 ribs removed.
                    Dec 2009 - Crankshafting
                    Dec 10 - Revision surgery...3 vertebrae taken down, hooks removed, at T11-L1 - screws inserted, fusion extended down to
                    L3 using Pedicle screws, some rib removed to try to derotate. Praying for things to settle.

                    Comment


                    • #11
                      Hi Ruth,

                      I was just thinking the same things that Aussiemum said. I can see how he might feel that she doesn't necessarily need surgery right now if she is balanced w/no severe asymmetry or rib hump, but it is my understanding that curves that high will intend to increase about 1 deg. a year, so she might need surgery at some point. Wouldn't hurt to seek another opinion, but definitely keep an eye on it.

                      Best wishes,
                      Renee

                      Comment


                      • #12
                        Does anyone know what a traction x-ray is?

                        Ruth
                        Ruth, 50 years old (s-shaped 30 degree scoliosis) with degenerative disc disease, married to Mike. Mother to two children - Son 18 and daughter 14. Both have idiopathic scoliosis. Son (T38, L29) has not needed surgery to date. Daughter (March 08 - T62, L63).

                        Comment


                        • #13
                          Hi Ruth,

                          I know it's yet more limbo-land, but I can't help feeling it's good news. I think I'd be delighted

                          Re traction x-ray - I'm guessing but I imagine it's an xray taken whilst traction is applied to see how much the spine will straighten. Could well be wrong though, I expect someone will be along in a moment with a knowledgable answer...

                          Laura x
                          UK based Mum of Imogen, 38 degree curve at 9 years old. SpineCor since 15/6/07, 31 degrees in brace.
                          10th December 07 - 27 degrees, 23rd June 08 - 26 degrees, Feb 09 - 24 degrees, Aug 09 - 35 degrees, Jul 10 - 47 degrees, Dec 10 - 50+ degrees.
                          Surgery due to take place early December 2011 at the RNOH, England.

                          Comment


                          • #14
                            Esme had her bending x-rays and traction x-ray today.

                            The traction x-ray is done by a doctor pulling from the neck with a little harness and another person pulling from the feet and then the x-ray is taken. I was concerned this might be painful for Esme but she said it wasn't that it just hurt her teeth a bit.

                            Will be seeing the doctor again once the pulmonary test has been done.

                            Ruth
                            Ruth, 50 years old (s-shaped 30 degree scoliosis) with degenerative disc disease, married to Mike. Mother to two children - Son 18 and daughter 14. Both have idiopathic scoliosis. Son (T38, L29) has not needed surgery to date. Daughter (March 08 - T62, L63).

                            Comment


                            • #15
                              Ruth, I am in agreement with Aussiemom & Flowerpower. I just went through something very similar with my daughter Laura. When her curve was holding around 50 degrees, 3 different surgeons told us it was ok to NOT do the fusion, especially because she was skeletally mature (Risser 5). However, once she progressed to 66 degrees, it was another story. Today is one week since her surgery.
                              Here's what we were told: There was a 75% chance that her curve would increase beyond the 66 degrees, even though she was finished growing & started her period 1 1/2 yrs. ago. The higher the curve got, the less flexible it would become (what did Esme's bending xrays show?), & more vertebrae would have to be fused as well, resulting in the operation being much more difficult.
                              I don't mean to scare or upset you. I just want you to be sure that NOT doing the surgery is the right thing. It doesn't sound like you are 100% confident with the surgeon's explanation for NOT fusing her now.
                              Perhaps you really should get another opinion. Where is her surgeon/hospital located?
                              Martha
                              Mother of Laura, Age 19
                              Diagnosed with S curve at Age 13 (49*T/32*L)
                              Wore brace for one year (Wilmington Jacket)
                              Posterior spinal fusion on April 17, '08 with Dr. Flynn at CHOP (Age 16)
                              Fused T2-L2
                              Pre-op curves: 41*UT/66*T/34*L
                              Post-op curves: 14*UT/19*T/19*L
                              Note: At 1 yr. post-op appt, UNFUSED lumbar curve improved to 14*!!
                              OK to email me at: malka22@comcast.net

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