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Thread: Consult yesterday, didn't really help, going to our last on Monday

  1. #1
    Join Date
    Feb 2013
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    Consult yesterday, didn't really help, going to our last on Monday

    We say our 4th surgeon yesterday and we shocked to hear he recommended BRACING! My son is T55, L42. He said he sees adults in his practice that started with AIS curves like his and they are doing okay. He said statistically he is due to progress, but you never know. He could wear the brace to halt it and see what happens, but it would not cure him of course. That we'd need annual XRAY's to monitor.

    Honestly, I just think he wants to have a more appointments with us, he did not even measure his curves "technically" as he put it. Did not look at the bending Xrays we brought either.

    Forcing the surgery question, I did get him to estimate fusion level of T3 to L1 or L3. He said there wasn't much difference between L1 and L3!

    I am just shocked at how different this consult went.

    Hoping for better consult on Monday in Miami.
    Mom to son with new straight spine 8/15/2013 T16, L16
    Pre op T65, L?
    diagnosed 2/21/13 T55, L42

  2. #2
    Join Date
    Mar 2010
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    2,755
    Sorry your appointment didn't go so well. It doesn't sound like this doctor has it together at all.
    How old is your son? Is he still growing?
    Do you mind telling us who this doctor is?
    Sorry for all the questions. I would be upset, too. I wouldn't take my child back there either. 55* is WAY out of range for bracing.
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  3. #3
    Join Date
    Jan 2008
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    Bracing a 55* is clearly outside the standard of care. If you don't mind, I think we need to identify this guy for the sake of others.

    Also, there is no guarantee wearing a brace would stop the progression. My daughter wore her brace as instructed and still progressed.

    I doubt there is a single kid would would wear a brace, presumably a hard brace for 23/hours a days, for several years who is in your son's shoes and who was honestly told the facts. I would question their understanding of the situation if they agreed to wear the brace. It simply is not rational. It is masochistic.
    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."

  4. #4
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    She listed the consults in another post. I'm betting this guy is Mason at Shriners Tampa. I'm guessing he never wore a brace. Just a wild guess.
    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."

  5. #5
    Join Date
    Feb 2013
    Location
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    No we did not see Dr. Mason. In thinking about it, I think the Dr. was presenting an option to brace for 2 months so the curve wouldn't progress. (I realize there are no guarantees) As this disease is so unpredictable, he was giving us an option to watch my sons curves. I guess he feels comfortable doing the surgery later should he progress. As if the outcomes would be similar enough, not to rush surgery. This is what I was expecting to hear at our first consult and would have taken that path.

    In having these consults I have realized the importance of being comfortable, technically and personally, with the doctor and what I need to be comfortable may not be the same as other patients. -C
    Mom to son with new straight spine 8/15/2013 T16, L16
    Pre op T65, L?
    diagnosed 2/21/13 T55, L42

  6. #6
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    Sep 2003
    Location
    Northern California
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    6,802
    Hi...

    You might also think about just watching without a brace. There is probably a small risk that your son's curve could increase rapidly, but I sense that you're very observant, and think you'd probably recognize any significant increase. One of the surgeons I work for is very conservative, and I'm guessing he'd recommend that there isn't a lot of risk in waiting for awhile. Fusing a 65 degree curve isn't very different than fusing a 55 degree curve.

    Hope you can settle on an opinion that gives you and your family some peace of mind.

    Regards,
    Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
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    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
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  7. #7
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    Waiting a while on a 55* T curve on a 14 yo boy and trying to determine progression rate is not outside the standard of care to my knowledge.

    Bracing a 55* T curve is. I will be shocked if insurance pays. I doubt Kat's mother got her insurance to pay for her brace. She also had to go quack-shopping just to get the damn thing and probably had to get a chiro to prescribe it. These are potential clues as to how far outside the standard of care bracing a 55* curve is.
    Last edited by Pooka1; 04-19-2013 at 07:50 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."

  8. #8
    Join Date
    Oct 2012
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    One of our opinions also suggested bracing our son when he was measuring 55 degrees but said it would most likely only buy him time and might have a very small chance of pushing him into the gray area. With thought we realized that the extra time was not helpful and he would have to wear the brace and still have surgery so we opted not to go that route. But evidently some doctors still consider bracing to buy time.

  9. #9
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    Quote Originally Posted by tkare View Post
    One of our opinions also suggested bracing our son when he was measuring 55 degrees but said it would most likely only buy him time and might have a very small chance of pushing him into the gray area. With thought we realized that the extra time was not helpful and he would have to wear the brace and still have surgery so we opted not to go that route. But evidently some doctors still consider bracing to buy time.
    There's no evidence bracing a 55* buys any time. I would bet my house they would all admit this. It is completely unstudied to my knowledge. There is absolutely no basis whatsoever for a surgeon to suggest this.
    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."

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