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Thread: Dissapointing Visit

  1. #1
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    Dissapointing Visit

    Totally unexpected news at post-op visit. Of course I am beginning to get used to unexpected news these days. I knew by the look on his face that it is not what the doctor was expecting either. Katelyn's lumbar curve that was supposed to straighten out is now going the opposite direction.. This is the reason for her lean to that side now. He wants her to wear her brace again. She is soooooooooo upset He doesn't think it will be for long- maybe a few months but he can't gaurantee its going to fix it either. I am trying very hard to heed my own advice about "one day at a time" and thats what I am doing but it seems like there is never just a "Good Visit" so to speak. I know it could be worse though. Did any of your kids have to wear a brace after surgery??? and did it work??? Thanks.

    Sharon

  2. #2
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    There are testimonials of kids who wore braces for a few months after surgery. I can think of at least two. Maybe they will explain the circumstances as I don't remember them.

    Never lose hope. These guys can fix most things.
    Last edited by Pooka1; 02-20-2009 at 06:26 AM.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
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  3. #3
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    Oh, Sharon, I'm so sorry for the news!

    Please know we're thinking of you. I agree with Sharon as well. These doctors are experts in their field. They also have colleagues with whom they consult.

    Hang in there and know we are with you!

    Marian

  4. #4
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    Sending big hugs to Sharon and Katelyn. I can imagine how "punched in the gut" you feel. Hopefully the doc is right and that bracing for a few months will be the support her lumbar spine needs to stay straight. How old is Katelyn? I wonder if this has anything to do with more adolescent growing? Hopefully it isn't just from surgical overcorrecting. Know we are sending our best wishes your way.
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

  5. #5
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    Quote Originally Posted by Carmell View Post
    I wonder if this has anything to do with more adolescent growing?
    She was just fused several days ago. I don't see how any significant growth could have occurred.

    Hopefully it isn't just from surgical overcorrecting. Know we are sending our best wishes your way.
    She had a T52 and L52. Her fusion is T2 to T12. I don't see how the fusion could have caused the lumbar to switch curve direction. It's one thing to say the fusion wasn't long enough in which case I assume the same curve might progress in its old direction. But this lumbar curve switched. And virtually instantaneously. Incredible.
    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. #6
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    Sorry for the news, Sharon.
    Thinking about you guys.
    Bethany

  7. #7
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    Quote Originally Posted by smileyskl View Post
    ... Katelyn's lumbar curve that was supposed to straighten out is now going the opposite direction.. This is the reason for her lean to that side now.
    Sharon, I'm sorry y'all didn't get better news ...

    I'm assuming her lumbar curve corrected on opposite bending (because a true double major/double structural would have required fusing both curves). What does it do now on opposite bending?

    Hang in there.

    Pam
    Last edited by txmarinemom; 02-20-2009 at 02:24 PM.
    Fusion is NOT the end of the world.
    AIDS Walk Houston 2008 5K @ 33 days post op!


    41, dx'd JIS & Boston braced @ 10
    Pre-op 53, Post-op < 20
    Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


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  8. #8
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    I am sorry that you got bad news.

    Quote Originally Posted by smileyskl View Post
    He wants her to wear her brace again.
    If her curve has changed directions, shouldnt the brace be changed (or adjusted) to reflect that?

  9. #9
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    Has anyone ever heard of a curve switching direction just a scant few days after fusion???

    And the entire spine was straight immediately after the surgery.

    This sounds incredible. Unique perhaps?
    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."

  10. #10
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    Thanks everyone,

    I am not sure really how to explain what has happened. On the initial X-ray after the surgery (taken in the OR I assume) it is perfectly straight top to bottom but within ten days is now leaning. I am not sure why he didn't go into the lumbar area and do it all at one time. I have a lot of questions about that when we see him in a week. Obviously, this is not what any of us expected and I was sort of but not totally in shock when I saw the new x-ray. I knew something was up because of her lean but wasn't prepared for that.

    Concerned Dad,

    Yes, she will have to have the brace repadded and maybe even get a different brace. We still have to consult on that, but he wanted her to just wear the one she had until then and get used to wearing it again. He says we are talking about months, not years.


    I am hoping that since it went from straight to leaning so fast that maybe it will correct just as fast. Maybe if its held that way a while it will stay??

    I don't know, I need more info from the doctor - I was just wondering if others experienced this.

  11. #11
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    Sharon,

    It is more of a slant, not a curve, if that makes any sense, I need to clarify because I said curve, but very noticiable making her hips completely uneven and also her shoulders.

    Sharon
    Last edited by smileyskl; 02-20-2009 at 03:26 PM.

  12. #12
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    Quote Originally Posted by smileyskl View Post
    I am hoping that since it went from straight to leaning so fast that maybe it will correct just as fast.
    Excellent point.

    Also, if it's a lean then it sounds like the junction between the fused and unfused portions is bending (about that point) and the lumbar is staying straight?

    Good luck, to you and your daughter, 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."

  13. #13
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    Quote Originally Posted by smileyskl View Post
    Sharon,

    It is more of a slant, not a curve, if that makes any sense, I need to clarify because I said curve, but very noticiable making her hips completely uneven and also her shoulders.

    Sharon
    You mean like a trunk shift?
    Fusion is NOT the end of the world.
    AIDS Walk Houston 2008 5K @ 33 days post op!


    41, dx'd JIS & Boston braced @ 10
    Pre-op 53, Post-op < 20
    Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


    VIEW MY X-RAYS
    EMAIL ME

  14. #14
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    Exactly, it is bending from where the rods stop but yes it is straight, just drastic.

    Sharon

  15. #15
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    I know it is obviously very flexible, because when he was holding her hips straight, she looked straight. I guess thats the idea with the brace.

    Sharon

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