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Thread: Only 50% correction after surgery - 15yo daughter devastated

  1. #16
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    Quote Originally Posted by mom2two View Post
    I believe that's correct, Sharon -- the surgeon said the lower part of the spine (no fusion) will straighten out "a little bit." Sorry I'm still unable to upload the image, but the rods go about half-way down the spine (I can count seven screws), certainly not as extensive as most I've seen. I understood his reasoning to be that the lower part of the spine was not actually malformed, but rather reacting to the deformation in the upper part of the spine.
    Well that sounds like he was hoping the compensatory lumbar will straighten if he straightens the thorax and that indeed happens as far as i know. The lumbar came to match the (straightened) thoracic with both my kids but only a surgeon can comment on it really.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

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  2. #17
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    Hi mom...

    I'm going to hold off on making a judgment about whether this could be surgeon error. I do think it's a good idea to get a second opinion. If you want a recommendation, feel free to PM me with your geographic location.

    You're going to need to get preop and postop xrays from the surgeon's office to take to the second opinion. I would call the practice ASAP, and find out their procedure for supplying you with those films, hopefully on a CD. If their xrays aren't digital, I would ask them to pull the original xrays and sign them out to you (temporarily). They may give you some difficulty about getting original xrays (again, if they don't have digital films), but the xrays belong to you and your daughter, so you can always push the issue. Once you've got the CDs, we can help you figure out how to get them posted.

    Regards,
    Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
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  3. #18
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    Well that sounds like he was hoping the compensatory lumbar will straighten if he straightens the thorax and that indeed happens as far as i know. The lumbar came to match the (straightened) thoracic with both my kids but only a surgeon can comment on it really.
    That gives me hope, Sharon, thanks. That's exactly the sense I got from him. It's hard to pin him down on projecting the anticipated outcome; he uses qualifiers "should" "could" "might" in every sentence.

    Linda - I've got an appt with our family doctor this week (who first diagnosed the girls) -- I'm hoping he'll be able to get me in to another surgeon who can confirm that all is well and as is should be. Remember that I'm dealing with a teenage daughter to whom appearance is "everything" and who is also a dancer, to whom lines and symmetry are of exaggerated importance.

    While I'm at it -- does anyone remember the first time their child got out of bed, at the hospital, post-op? Do you remember being horrified at how much worse the shoulder imbalance seemed to be? I attributed it to how she was holding herself (remembering she had multiple broken ribs on one side), but now I wonder. . .
    Last edited by mom2two; 03-25-2014 at 01:46 PM. Reason: spelling

  4. #19
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    I'm trying to upload the post-op x-ray that we took on the camera phone.pic of xray.gif Does that help at all?

  5. #20
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    Okay that looks a lot like my one kid (Kid 2) in this post...

    http://www.scoliosis.org/forum/showt...792#post135792

    I can't really tell in your photo but I am guessing she is fused from about T5 to about L1. There are nine levels fused in any case (count the screws on the rod on the right). My daughter has ten levels fused... T4 to L1.

    My daughter had a false double which is a thoracic curve that has a fairly large non-structural lumbar curve under it. Those curves stabilized at mid 20*s and I have to say it took a few years for her slight lean to resolve. It is my understanding that these curves CANNOT be hyper-corrected because that will leave a high left shoulder. And indeed our surgeon didn't hyper-correct her even though he hyper-corrected her twin who had a different type of thoracic curve (Kid 1 in the post). This leads me to believe the "80% correction" was not meant to be literal or was some misunderstanding if your daughter indeed had a false double like my daughter... you can't do an 80% correction on that and still have even shoulders as far as I know.

    Of course I am not a surgeon and don't really know what I'm talking about! I think you really should get another opinion about this for piece of mind.
    Last edited by Pooka1; 03-26-2014 at 06:54 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."

  6. #21
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    So my kid went from 57* to let's say 25* (the 20* was immediately post op and there must have been some slight settling since) so that's a 32/57 = 56% reduction, close to what your daughter got. That may be as good as it gets if you want even shoulders for the false doubles (if that is what your daughter had). Life is, of course, completely unfair.
    Last edited by Pooka1; 03-25-2014 at 06:15 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."

  7. #22
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    Thanks, Sharon. I spoke to my daughter today about your girls, and how it seems to take quite some time for the lower non-structural curve to respond to the surgical correction of the upper.

    Our surgeon has been telling us all along how important it is for the girls to stay flexible after fusion, encouraging yoga, for example. Exercise is of course part of any healthy lifestyle, but do you know why flexibility is stressed for a fused spine? Do your girls incorporate yoga or dance or anything like that into their routines?

    steph

  8. #23
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    Quote Originally Posted by mom2two View Post
    Thanks, Sharon. I spoke to my daughter today about your girls, and how it seems to take quite some time for the lower non-structural curve to respond to the surgical correction of the upper.

    Our surgeon has been telling us all along how important it is for the girls to stay flexible after fusion, encouraging yoga, for example. Exercise is of course part of any healthy lifestyle, but do you know why flexibility is stressed for a fused spine? Do your girls incorporate yoga or dance or anything like that into their routines?

    steph
    Hi Steph,

    No they don't do anything physical. They are not sporty. They are very limber and flexible without doing anything due to a connective tissue disorder of some type which we hope isn't Marfans. It's pretty benign so far whatever it is besides the scoliosis of course! As long as their aortas don't enlarge they are out of the woods most likely and there is no sign of any enlargement to date.

    They are consumed with college and sleeping(!)... no time for much else.

    In the meantime, they enjoy their tall, slim physiques that go along with some of these conditions. One is 5' 10" and the other is 5' 11". :-)
    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."

  9. #24
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    I'm glad they're healthy, Sharon. They sound wonderful.

  10. #25
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    Steph,
    It looks like T4-T12 to me. Did the doctor say which vertebrae were fused? Both girls look almost identical on x-ray!

    I'd go ahead and get the second opinion, but there may be still more time for the lumbar to straighten out.

    The two of you have daughters with very similar looking spines. WOW! Yes, that was a redundant statement.

    I think there's a lot of hope for your daughter. It looks to me like her whole lumbar was spared. I thought I saw the little residual rib that sits at T12 where the fusion ended. Her lumbar flexibility shouldn't be affected at all. I'm wondering if she's having some reaction to the medications still being in her system and a hormonal teenager, of course. Is she still on pain meds and/or muscle relaxants? Sometimes people act differently when they are on those meds.

    I hope you get things figured out. You've definitely come to the right place. You and Sharon seem to have a lot in common.
    Do you have another daughter that needs surgery?
    Last edited by rohrer01; 03-25-2014 at 10:08 PM.
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    but we are alive today!

  11. #26
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    Quote Originally Posted by rohrer01 View Post
    It looks like T4-T12 to me. Both girls look almost identical on x-ray!

    I'd go ahead and get the second opinion, but there may be still more time for the lumbar to straighten out.

    The two of you have daughters with very similar looking spines. WOW!
    Well, my surgeon did say that this was the most common curve, even though each case is quite individual.

    When the lumbar straightens out, that would level out the hips as well, right?

  12. #27
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    Quote Originally Posted by rohrer01 View Post
    I think there's a lot of hope for your daughter. It looks to me like her whole lumbar was spared. I thought I saw the little residual rib that sits at T12 where the fusion ended. Her lumbar flexibility shouldn't be affected at all. I'm wondering if she's having some reaction to the medications still being in her system and a hormonal teenager, of course. Is she still on pain meds and/or muscle relaxants? Sometimes people act differently when they are on those meds.

    I hope you get things figured out. You've definitely come to the right place. You and Sharon seem to have a lot in common.
    Do you have another daughter that needs surgery?

    You see, that's what I need to hear and also to tell my daughter: that the whole lumbar was spared.

    Can you go into any detail about the "little residual rib"? She's saying that one side of her rib cage (front) ends with a "V" shape, while the other is rounded (as it should be).

    She's was never on muscle relaxants and is off meds except for the occasional Tylenol at night (if she's done too much during the day). She's been back to a normal school schedule for the past 3 weeks.

    steph

  13. #28
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    Quote Originally Posted by rohrer01 View Post
    Do you have another daughter that needs surgery?
    Yes, she's the older of the two, but wanted to be finished high school before taking the time necessary for the surgery and recovery.

  14. #29
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    Quote Originally Posted by mom2two View Post
    You see, that's what I need to hear and also to tell my daughter: that the whole lumbar was spared.

    Can you go into any detail about the "little residual rib"? She's saying that one side of her rib cage (front) ends with a "V" shape, while the other is rounded (as it should be).

    She's was never on muscle relaxants and is off meds except for the occasional Tylenol at night (if she's done too much during the day). She's been back to a normal school schedule for the past 3 weeks.

    steph
    It's just normal anatomy. Our last thoracic rib is very short, like not even a third the length of the rest of the ribs. It doesn't attach to anything except the 12th vertebra like the other ribs do. My husband doesn't have scoliosis and one of his "little ribs" sticks out. It could be her normal anatomy.

    If the 12th thoracic rib sticks out, it will stick out of her side, not her rib cage. If her rib cage is different it's probably because her spine was straightened and the ribs attach to the spine.

    I'll bet almost everyone can lay on their back and look at both sides of their rib cages and see differences. Like our faces aren't perfectly symmetrical either. We have one ear higher than the other, or one eyebrow shaped differently than the other. It's the way we develop and it's perfectly normal.
    Last edited by rohrer01; 03-26-2014 at 12:47 AM.
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  15. #30
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    I think she's probably being a little hypersensitive about her physique. No one has a "perfect" body, even if they don't have scoliosis.
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

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