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Willow's 8 month appt and ancillary discussion

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  • Willow's 8 month appt and ancillary discussion

    The radiographs look good and the surgeon hit the balance in both planes with this kid also. The residual curve in the lumbar did not resolve completely like with her sister. I would say it looks exactly like the initial radiographs so it hasn't gotten worse I don't think. I don't know how big it is but I think it's at least 15* (eyeball guess) and maybe more. I asked him about it and he said that will be stable. The top is dead straight which is why she is thought to be stable with the lower curve and that agrees with what Dr. Hey said in one of his blog posts. That total straightening through the thorax drove most of the lumbar correction but there is some left. Her rods are almost completely superimposed on sagittal view so she has virtually no rotation left.

    The guy is a spine artist.

    It's amazing how different their cases were. The first kid had much more rotation and was a more complicated case but has almost no residual curve in the lumbar (and has absolutely perfect balance in coronal and sagittal views - it's amazing to my little lay eye). This second kid had a simpler case, much less rotation but has a residual lumbar curve. There are probably a bunch of other differences that the surgeon could point out. It's remarkable.

    He does not have digital radiographs so I can't post Willow's or her sister's easily. I have called the nurse to find out how to get copies. If I have to get their whole medical files just to get the radiographs then I will request that through the hospital but I don't anticipate that. The girls should have copies of their radiographs.

    She is released from restrictions and she has to return in a year.

    Two down, none to go.

    Oh, forgot to mention the Marfan's discussion. Apparently, there are two groupings of Marfan-related curves, one group that has multiple curves and may show fast progression and one group that present exactly like AIS. So Flerc's surgeon may have been correct about Marfan's curves being different although they aren't always different according to our surgeon. So you can't use an AIS-like curve to rule out Marfan's as I think Flerc's surgeon was trying to do but you might suggest possible Marfan's if you have the multiple/fast curves. And he continues to think that my girls don't have Marfan's. He has seen frank Marfan's cases and he doesn't feel my kids meet that (or at least don't have enough skeletal indicators to suggest it). I live for that affirmation.
    Last edited by Pooka1; 06-14-2010, 11:06 AM.
    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."

  • #2
    It's good to hear good news for your girls! I can't even imagine, as a parent, how difficult this must have been for you. It always seems easier if it's our own problem. I think I can speak for all parents when I say I would rather have it, than see my kids go through it. I'm glad they are both okay and hopefully Marfan's free.
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

    Comment


    • #3
      I second that, Rohrer.

      Pooka, great news and thanks for posting. I'm enjoying thinking of your twins going to school with their straight backs and not a care.

      I have three kids, none of them with scoliosis, and sometimes when I'm feeling sorry for myself with my weird back, I remind myself that I could be in the position of saying, "If only it were me." It is me, and that's better than any of them. I'm glad your kids are through the gauntlet. None to go.
      Amy
      58 yrs old, diagnosed at 31, never braced
      Measured T-64, L-65 in 2009
      Measured T-57, L-56 in 2010, different doc
      2 lumbar levels spondylolisthesis
      Exercising to correct

      Comment


      • #4
        good job, Sharon.....you picked the right doctor...may they go on to have happy and healthy lives!

        jess

        Comment


        • #5
          Great news, Sharon.

          I couldn't be happier for you and your girls!!
          mariaf305@yahoo.com
          Mom to David, age 17, braced June 2000 to March 2004
          Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

          https://www.facebook.com/groups/ScoliosisTethering/

          http://pediatricspinefoundation.org/

          Comment


          • #6


            Thanks for sharing that info. !!

            So happy for your girls!!

            Comment


            • #7
              Good news Sharon !!! You must be so happy with the results, and the girls balanced and straight

              I'm still at one down one to go stage and can't wait until I can type DONE!

              I sure understand how different it can be between sisters - mine are not twins, 3 years a part. Found the issue in the oldest - had the youngest checked and she was the one that progressed to surgery this past winter.

              Oldest has the same curve (not the same degree), but Dr. said also has kyposis - so fusion will be much longer.

              Since she is the oldest I wonder if her sister was prevented from this issue or will it appear later.

              I look forward to being in the same place you are now.

              Dee
              Dee - Mother of two daughters, both with scoliosis KateScoliKid (16yo) 52* Lumbar curve
              Fusion Surgery 2/9/10 T-11->L-3 @CHKD Norfolk VA
              Jes (20yo) T 3 -> L 3 w/ Kyphosis

              Comment


              • #8
                Sharon

                Nice to have good news... They made it, and so did you! ( Also, their surgeon, think about their journey)

                Could you imagine having to go through this years ago, without the internet? and without NSF? (You know, the "dark ages")
                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

                Comment


                • #9
                  That is just such good news Sharon, I can only imagine how great it was for you to hear that. Your wonderful daughters have a full "straight" life ahead of them.

                  Lorraine. xx
                  Operated on in 1966, harrington rods inserted from T4 to L3, here in Australia. Fusion of the said vertebrae as well. Problems for the last 14 years with pain.
                  Something I feel deeply,"Life is like money,you can spend it anyway you wish, but can only spend it once.

                  Comment


                  • #10
                    Thanks everybody

                    I was out of town doing field work (in a beautiful locale!) or I would have responded sooner.

                    I appreciate the kind thoughts. We had a great surgeon and some good luck. My husband is really grateful that we ended up here in Raleigh because we ended up with the surgeon we had. Nothing superstitious... just grateful at the turn of events.

                    Dee, you'll be through to the other side too. And so will Twinsmom but some roads are longer than others. Life is unfair and uneven and inexplicable.

                    Ti Ed, I like the internet and NSF but the linchpin was the surgeon who we were referred to by another surgeon who we got as a referral from the pediatrician. No electrons involved.

                    My husband and I have several more gray hairs over this extended episode and probably have some time shaved off our lives with the mental burden but I'm sure it will not compare to what awaits for us during the remainder of their teen years with dating and other sources of histrionics.
                    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


                    • #11
                      Originally posted by Pooka1 View Post
                      My husband and I have several more gray hairs over this extended episode and probably have some time shaved off our lives with the mental burden but I'm sure it will not compare to what awaits for us during the remainder of their teen years with dating and other sources of histrionics.
                      Hey Sharon,

                      Unfortunately, you are so right!

                      Having two children who are now young adults, I can assure you that reaching this point has put more gray hairs on my head than there are grains of sand on the beach - I think we should all run out and buy stock in companies who make hair dye because business will continue to boom - LOL!!
                      mariaf305@yahoo.com
                      Mom to David, age 17, braced June 2000 to March 2004
                      Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

                      https://www.facebook.com/groups/ScoliosisTethering/

                      http://pediatricspinefoundation.org/

                      Comment


                      • #12
                        ahhhh...hair dye...but it's good for the economy...

                        so glad to hear the good news about the kids.....hope things get easier from here on in...at least until they start dating...

                        jess

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