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  1. #1
    Join Date
    Aug 2014
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    33

    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. #2
    Join Date
    May 2009
    Posts
    3,745
    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

  3. #3
    Join Date
    Aug 2014
    Posts
    33
    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.

  4. #4
    Join Date
    Aug 2014
    Posts
    33
    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.

  5. #5
    Join Date
    May 2009
    Posts
    3,745
    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

  6. #6
    Join Date
    Aug 2014
    Posts
    33
    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.

  7. #7
    Join Date
    Mar 2005
    Location
    Ukiah CA
    Posts
    891
    Hi Karen. That a severe curve your daughter has. Good luck with her surgeries. My surgeon trained at leathermen spine center. There's this website for girls with scoliosis called curvy girls scoliosis
    Last edited by kennedy; 10-16-2014 at 01:40 PM.
    Kara
    25
    Brace 4-15-05-5-25-06
    Posterior Spinal Fusion 3-10-10
    T4-L2
    Before 50T
    After 20T

  8. #8
    Join Date
    Aug 2014
    Posts
    33
    Quote Originally Posted by kennedy View Post
    Hi Karen. That a severe curve your daughter has. Good luck with her surgeries. My surgeon trained at leathermen spine center. There's this website for girls with scoliosis called curvy girls scoliosis
    Thank you, Kennedy! And yes, we've seen that site! There's supposed to be a monthly CG meeting not terribly far from us, but we haven't heard back on when they ended up scheduling it. Hopefully we can get to one of those meetings at some point, though.
    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.

  9. #9
    Join Date
    Aug 2014
    Posts
    33
    Well, we've done her pre-op labs (all came back fine) and met with the surgeon one last time to go over the plan and ask any last questions. It becomes more real every day, I guess. Dr. Campbell was great answering all our questions, showing us a spine model with rods, hooks, and screws, talking about risk for future issues and fusion given she'll have to be fused to L4. While the ultimate risk is hard to quantify due to so many variables, he did say that she had less risk for issues if she maintained a healthy weight and engaged in exercise. That makes sense to me, though I'd kind of figured exercise like running would ultimately be bad for those last couple discs due to the impact forces. He said that shouldn't be a problem, but she's not really a runner anyway, preferring to swim, which is low impact either way. The only question I forgot to ask was about lung functioning since she's having 2 anterior procedures (one to access lumbar and one to access thoracic). She plays clarinet in her school band, so I wasn't sure what to expect in terms of her returning to playing, and I've found conflicting info online. But ultimately, it doesn't change anything in terms of going through with the surgery; it's just that I wanted to know what to expect, so I'll be asking about that while at the hospital. We asked how many inches she might gain with surgery, and he told us the most he's ever given anyone was 3 inches with the average 1.5 inches. He figures she'll probably get a couple. She's grown another inch since we last saw him 10 weeks ago, and she now stands at 5ft even (She came back from measuring her height saying she was 4ft 12" lol). I 'm not sure how she could possibly have gained any vertical height with her curves being as large as they are, but I'm glad for anything given she won't grow much after surgery.

    The nurses at the hospital who did her pre-op labs were great (we're going through Kosair in Louisville), and they were very thorough at explaining all the procedures for that day and what would happen when she comes back.

    She's since celebrated her 12th birthday with a sleepover party, and we've gone ice skating a couple times since she won't be able to do that for awhile after surgery, and she really enjoys it. She doesn't know it, but I ordered her a shirt with the periodic table listing for Titanium. I figured it would be kind of fun, but then I'm kind of a geek Anyway, I think the next 10 days are simultaneously going to be the longest and shortest of our lives.....
    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.

  10. #10
    Join Date
    Oct 2014
    Posts
    43
    This is my very first post, so forgive me if I do it wrong =) I will tell my story on the correct thread, but wanted to share what helped me when I was diagnosed at the age of 12. My mom supported me in everything, Dr visits, helping me to remain strong, allowing me to cry when needed, but not letting me fall into the "why me" pit for too long that I stayed there. It was a very scary thing, but from what you have posted, it sounds like you and your family are handling it the way that I would think is healthy. While I am currently trying to decide when to have my surgery, my mom passed away a few months ago, and I sure wish she was here now! But I know that she is always with me and will be forever. I myself find that educating myself and this forum help immensely. I just started reading a book that allot on here refer to that is invaluable as well titled "Scoliosis Surgery" by David Wolpert that has been very informative. Keep up the good work, and don't let the guilt of you not noticing bother you. Trust me, that is the last thing that your daughter is thinking about through this, and ever... My parents didn't notice mine either, and until I read that in your post, I never even considered that they should have noticed it. Things happen in due time, when they are meant to be. Please don't beat yourself up over it. Keep the sense of humor, laughter is good for the soul =) Hugs...

    Crystal
    Diagnosed in 1985
    Currently 62 degree curve, pending deciding on spinal fusion or not...

  11. #11
    Join Date
    Aug 2014
    Posts
    33
    Thank you for your kind words and perspective, Crystal. I'll look forward to reading more about your story!
    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.

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