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  • Newly Diagnosed

    Hi all,

    I've been reading up on posts here, trying to take in anything I can without getting myself too worked up or overwhelmed in the process. Our 11.5 year old daughter was just diagnosed with scoliosis in August, and by the time we found it, her curves were already spinal fusion territory at 84* and 91*. Her pediatrician had screened for it in March 2013, but looking back at pictures, it probably started 4-6 months later and progressed at lightning speed. We are going through Leatherman Spine Center in Louisville, KY, and her surgeries will take place in November. Our surgeon (Dr. Campbell) initially wanted to do 2 surgeries with anterior and posterior fusion from T4-L3, but he's pored over her films and MRI and doesn't think he can stop at L3 given the way her curve looks. He'll be breaking things up into 3 surgeries now, one on anterior lumbar, one on anterior thoracic, and the last on posterior placing rods/screws/hooks. He's told us the kids usually bounce back really well, and that the stress is a lot more on parents with the worry. Obviously this has been a lot to take in in a very short time. She currently has some pain, and the surgery should help with that at least in the near term. She also has one leg longer than the other, so I'm hoping that will improve after surgery. I worry a lot about how her back will be in 20-30 years (or 40 or 50!), but I know spine surgery has progressed a lot in the past 20-30 years, so will only be that much better in the next 20-30.

    I really wish I'd known/understood how heritable and serious scoliosis can be; my mother-in-law made an off hand comment probably 15 years ago about doing exercises for scoliosis in gym class and a niece of hers having rods put in her spine, and now that Girl Child's been diagnosed, I learned that MIL's father had it too. I don't think there's ever been any question of family history of scoliosis at either the OB or ped's office, and I really wish with the decreased school screenings that there was more effort to discuss this and raise awareness for parents who might need to keep a closer eye on their kids given a family history. I think our school district still does them, but not until 7th grade, and that seems far too late for girls.

    Anyway, there's tons more, as I'm sure most of you can imagine, but that's the Reader's Digest version anyway. I appreciate that there are forums like this available for information and support; the next few months will almost certainly be an emotional and physical roller coaster for us...
    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.

  • #2
    hi Karen
    question....have you consulted with a few surgeons just
    for other opinions....?
    i am not questioning need for surgery with such huge curves...
    just wondering where your surgeon will end the fusion....
    that is something you might want to consult with more than
    one surgeon about...

    wishing your daughter a future without pain...
    jess...and Sparky

    Comment


    • #3
      We haven't talked to anyone else yet, and that probably sounds horrible. However, Dr. Campbell teaches through UofL and gives conferences on spine surgery, and Leatherman Spine Center is really good. We have a pre-surgery consult later this month to go over the final plan, and I do want to clarify with him if he consulted with the other surgeons in the practice (two of them are on the board of the Scoliosis Research Society, and he's a member himself). While he wanted to stop at L3, he thinks her curve will progress if he doesn't go to L4. But you're right that we should get other opinions. It's just been a whirlwind. To be honest, Dr. Campbell so far has been kind and very focused on studying her curves and thoroughly pre-planning the surgery; we've felt like he's been giving us honest answers. But definitely the prospect of fusing to L4 is...daunting...
      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


      • #4
        I guess it might help if I put her xray on here:
        xray-sm.jpg
        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


        • #5
          wow....
          poor sweet girl...

          they must have progressed quickly....cannot imagine any physician missing curves that bad....

          hope your dear girl has successful surgery soon and has an uneventful
          recovery....

          jess

          Comment


          • #6
            Yeah it looks like it went from zero to train wreck in a year, starting (conveniently) several months after her ped screened her. The Mom Guilt for not catching it myself before that point is pretty massive
            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


            • #7
              Karen

              (Sigh) After a lifetime of battling scoliosis, and posting for many years now you would think I would get used to this. Usually what I say is learn how to breathe and take those deep breaths, they help out considerably.....Try to take care of yourself, your daughter needs you now.

              I have to agree with your surgeon about parents having it harder. Kids have this built in survival system that is one of the most amazing things....they really are the bravest of the brave. They also heal so quickly!

              There are many parents here that will chime in....in the meantime, if you have any questions at all, go ahead and ask away. There are no dumb questions.

              How is your daughter handling all this? It is a lot to absorb.....and with such short notice.

              Welcome to the forum

              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


              • #8
                Karen5, welcome to the forum.

                Very helpful comments upthread from folks.

                Please don't beat yourself up over not seeing this. Few parents know what to look for so you are in good company.

                I understand the surgeon trying to stop at L3. You might want to get a consult with Dr. Lloyd Hey in Raleigh. I have never met him but I would consult with him if my girls had problems in the future. Anyway I mention him because he has posted cases of his wherein he stood on his head doing various things to keep fusions into the lumbar as short as possible on kids. What I'm saying is this is an important issue with him which is good. Here is his blog...

                http://drlloydhey.blogspot.com/

                The Sept 23 post is for a 77* curve.

                You and your daughter will get through this.

                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


                • #9
                  Thank you both! I know we'll get through it, and this certainly isn't the worst scenario we could face in life.

                  As for how Girl Child is handling things, she's holding up remarkably well. The first visit with Dr. Campbell when he said she'd need surgery, of course that was her worst fear. He told us he wanted to get more xrays and walked out of the room to talk with the radiologist, and she just lost it. The radiologist came in the middle of her crying jag, and she was very comforting. The rest of that day, Girl Child didn't want us to even say the word surgery because it was so scary to her; she decided she would dub it "Fluffy Ice Cream", and that we should use that as her euphemism. We figured we'd give her whatever emotional space for that kind of thing that she needed. The next day she announced she was no longer scared of the word or the reality. Dr. Campbell ordered a full spinal MRI, and she completely rocked it with no nervousness (and thankfully has no underlying issues like tethered cord). When we went back for the follow up after the MRI and to get bending and traction xrays, he answered all of our questions that we had at that point, and he addressed her just as much in the conversation. In fact, at one point, she mentioned how she was tired, and he very seriously asked how he could help her that day. The tiredness had nothing to do with the scoliosis, so there wasn't really anything for him to do, but I think that the way he has addressed her, taken her concerns seriosuly, joked around with her during the traction xrays, I think all that has helped put her at ease. He was honest with her that having a rib removed would cause pain, but promised she would have a pain pump and have her pain controlled. We've always been very honest (at an appropriate age level of explanation) about things with our kids, so it's nice to have a doctor who has had a similar honest but gentle attitude. Last week Girl Child got her blood drawn to have it typed, and I remember being very scared of that kind of thing at her age. But she was actually hoping it would be a vein and not finger stick, and she said "Guess I should get used to that stuff!" I'm sure part of this is that the surgery is still quite a ways away, and she doesn't know the myriad of things that could possibly go wrong that we worry about. We've also talked about how since the "Why me??" question is not a question that will ever get an answer, it's not going to help any of us to dwell on it and ask it. We have to just face things and move forward. I suspect as we get closer to the date, there's going to be a ton more anxiety on all our parts, but for now, I'm really impressed at how well she's holding up.
                  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


                  • #10
                    Wow your daughter and your family have the exact right attitude in my opinion! That's how we approached it also. I think that is really the best way forward.

                    Your daughter is a star. :-)
                    Last edited by Pooka1; 10-02-2014, 09:04 PM.
                    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
                      Sounds great!....She is already being proactive as far as needles are concerned....its proof of her bravery since needles and shots are scary things for kids.

                      The “why me” question always surfaces and of course blaming someone or blaming yourself always creates problems....We all know its nobodies fault, things happen.

                      My Goddaughter is in her residency over at Kosair Children’s hospital. She will be a pediatric surgeon one of these day’s. I noticed that one of the scoli surgeons at Leatherman teaches at Kosair. Her name is Dr Crystal English. It’s a small world....

                      There have been studies at UCSF about using multiple surgeons and the studies and results show that it is positive. I had 2 scoli surgeons and a vascular surgeon in the playing field, and around a dozen other doctors that were there. There was extensive planning that happened, and the team did a fantastic job! I would bet your surgeon will have a great team. It’s a good question to ask.

                      Its really hard trying to follow all the medical terminology and we do the best we can. I am wondering if you have heard anything about “Halo traction”

                      I’m also wondering about her stage dates? What will be the period of time between surgeries?

                      I always have a million questions....(smiley face)

                      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


                      • #12
                        I have heard of halo traction, but figured she must not be quite to that level? Dr. Campbell did say she isn't the worst he's ever seen, which was actually sort of comforting to me. He said he saw a 17 year old girl with 127* curve, and I just can't imagine...

                        Her staging dates are Nov 10, 14, 17. He said she'll need a few days after each of the first two to make sure her lung functioning is good again (those are the anterior surgeries). I think he said each of the first two will be 2-3 hours, and the last would be 4 or 5. He said he could do it in one long surgery, but it would be like 12 hours, and he doesn't want to leave her under anasthesia that long. I know he'll have a pediatric pulmonary or thoracic surgeon with him for the first two because of the anterior approach, but not sure with the last one.
                        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


                        • #13
                          Originally posted by Pooka1 View Post
                          Wow your daughter and your family have the exact right attitude in my opinion! That's how we approached it also. I think that is really the best way forward.

                          Your daughter is a star. :-)
                          Thank you! I come from very stoic, pragmatic stock, so that just tends to be our coping strategy. That and dark humor. We've talked about doing an after party for Girl Child, once she's healed up. Party games to include "Guess how many inches she grew from surgery" and "Pin the rod on the spine". You have to laugh or else you cry....
                          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


                          • #14
                            Originally posted by Karen5 View Post
                            Thank you! I come from very stoic, pragmatic stock, so that just tends to be our coping strategy. That and dark humor. We've talked about doing an after party for Girl Child, once she's healed up. Party games to include "Guess how many inches she grew from surgery" and "Pin the rod on the spine". You have to laugh or else you cry....
                            Excellent!
                            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


                            • #15
                              if your daughter still likes Halloween, please tell her for me
                              she should dress as Wonder Woman or another super hero...
                              because she truly IS...
                              she is handling it better than most adults i know of...

                              the great thing she has on her side is that, as Ed mentioned,
                              kids heal a whole lot faster than most adults do...

                              i am sure the surgeon wants to keep as much flexibility for your
                              girl as he can....without making revision necessary.

                              please let her know her attitude is impressive...
                              she is a total hero....

                              jess...and Sparky

                              Comment

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