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Thread: DD recently diagnosed -- any suggestions?

  1. #76
    Join Date
    Aug 2019
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    99

    Pretty Profound

    Quote Originally Posted by titaniumed View Post
    I think its a good idea even if it "might" be influencing his decision.....The now or never urgency of the situation. You will have to see how he reacts.

    I wrote a post the other day (which I deleted) on the physical therapy subject which included around 30 different things I have done battling scoliosis over the many years, and at the end, I had "Beatles White Album"

    So, for those out there that are waiting for surgery, (Plenty of us) and maybe not old enough to know, or forgot, there is a Beatles song I think of, (Over the years now) and the beauty of art means you can decipher the words any way you like...

    https://www.youtube.com/watch?v=Man4Xw8Xypo
    This is a Paul McCartney composition
    Blackbird singing in the dead of night
    Take these broken wings and learn to fly
    All your life
    You were only waiting for this moment to arise

    Blackbird singing in the dead of night
    Take these sunken eyes and learn to see
    All your life
    You were only waiting for this moment to be free

    Blackbird fly, Blackbird fly
    Into the light of a dark black night

    Ed
    Nicely framed Ed.It is like closing your eyes & jumping off the highest cliff into the unknown -A leap of faith. I am 1 who not only remembers the Beatles but especially the White album- sure do miss them.

  2. #77
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    Aug 2019
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    44
    Quote Originally Posted by titaniumed View Post
    I think its a good idea even if it "might" be influencing his decision.....The now or never urgency of the situation. You will have to see how he reacts.
    I exchanged messages with the doc. He isn't considering VBT because she would be a marginal candidate at Risser 3 anyway, and he doesn't want to gamble on a borderline surgery for a thoracic curve in the mid-to-high 30s on a relatively mature kid. If it was the lumbar curve that appeared to be progressing* and it was a question of gambling to avoid fusion down to L3/L4, his opinion very well could be different. But the bottom curve appears to be holding. In her case, if we gamble that the top curve stays sub-surgical and lose, the downside (fusion from maybe T7/T8 to T12/L1) isn't as big of a deal, and given that she doesn't have a ton of growth left, he thinks there is a good chance we'll win the bet and she'll avoid surgery altogether.

    * I didn't say anything to him, but measuring and remeasuring her curves a bunch over the past few days, I'm really unconvinced that the top curve is progressing all that much. I keep on getting it at 34 or so from the first scan to 36 or so in the second. I really think this is an issue where he was a couple of degrees low back then and is a couple high now (both well within intra-observer error!), which is giving the appearance of modest progression where it's really minimal (if any).

  3. #78
    Join Date
    May 2008
    Location
    reno,nevada
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    4,104
    Quote Originally Posted by Scared View Post
    Nicely framed Ed.It is like closing your eyes & jumping off the highest cliff into the unknown -A leap of faith.
    Its only unknown by one's choice. "Take these sunken eyes and learn to see".

    The lyrics are so simple yet so brilliant. And yes, there is a lot of faith required. I would not have made it without faith. This goes for parents and patients.

    Ed
    49 yr old male, now 61, the new 61...
    Pre surgery curves T70,L70
    ALIF/PLIF 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

  4. #79
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    May 2008
    Location
    reno,nevada
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    4,104
    Quote Originally Posted by Concerneddad View Post
    I exchanged messages with the doc. He isn't considering VBT because she would be a marginal candidate at Risser 3 anyway, and he doesn't want to gamble on a borderline surgery for a thoracic curve in the mid-to-high 30s on a relatively mature kid. If it was the lumbar curve that appeared to be progressing* and it was a question of gambling to avoid fusion down to L3/L4, his opinion very well could be different. But the bottom curve appears to be holding. In her case, if we gamble that the top curve stays sub-surgical and lose, the downside (fusion from maybe T7/T8 to T12/L1) isn't as big of a deal, and given that she doesn't have a ton of growth left, he thinks there is a good chance we'll win the bet and she'll avoid surgery altogether.

    * I didn't say anything to him, but measuring and remeasuring her curves a bunch over the past few days, I'm really unconvinced that the top curve is progressing all that much. I keep on getting it at 34 or so from the first scan to 36 or so in the second. I really think this is an issue where he was a couple of degrees low back then and is a couple high now (both well within intra-observer error!), which is giving the appearance of modest progression where it's really minimal (if any).
    This person is a good surgeon, and he is probably glad you asked....

    Thanks for explaining about your daughter. It all sounds pretty good.

    How is she coping with the brace?

    Ed
    49 yr old male, now 61, the new 61...
    Pre surgery curves T70,L70
    ALIF/PLIF 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

  5. #80
    Join Date
    Aug 2019
    Posts
    44
    Quote Originally Posted by titaniumed View Post

    How is she coping with the brace?

    Ed
    OK. She's not really the type to care about the aesthetics of it, so that part is easy. It's not comfortable, of course, and we sometimes have to nag her, especially on the weekends where the normal school day schedule is thrown off (she normally wears it from about 9:00 pm the night before until 4:30 pm the next day, then takes it off after school for basketball practice and dinner and the like), but she's pretty responsible about it. I remember reading a study about how older girls are generally much more compliant, which as the parent of a teenage girl, made total sense. They're a lot more (emotionally) mature and responsible, and there is usually a light at the end of the tunnel, so I totally get why 13 or 14 year-olds are normally more compliant than 10 year-olds.

    I guess the good news is that we're timing it so that she'll be able to stop bracing right before she starts high school. We even coordinated with the high school coach so that her (hopefully last while bracing) scan will be right before summer league/summer camps so that she'll get to do those without a brace. (Btw, her eighth grade season is going smashingly. She's leading the team in virtually every statistical category except rebounding -- where she's second, behind her 6'2" friend -- and they're 9-2 with two close losses to a much bigger school. She's also leading the competitive high school feeder league in scoring, and her three-point shooting percentage would rank in the top ten in the state if she was in high school.)

  6. #81
    Join Date
    May 2008
    Location
    reno,nevada
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    It sounds like she has adapted to the brace which is not an easy thing to do.....but then again, we do have that built in determination. (scoli kids)

    Congratulations on her sucessful sports endeavours....it was something that I also had on my mind during my teenage days.

    Scoliosis didnt stop me.

    I take it the next set of x-rays will be in about 6 months?

    Ed
    49 yr old male, now 61, the new 61...
    Pre surgery curves T70,L70
    ALIF/PLIF 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

  7. #82
    Join Date
    Aug 2019
    Posts
    44
    Quote Originally Posted by titaniumed View Post
    It sounds like she has adapted to the brace which is not an easy thing to do.....but then again, we do have that built in determination. (scoli kids)

    Congratulations on her sucessful sports endeavours....it was something that I also had on my mind during my teenage days.

    Scoliosis didnt stop me.

    I take it the next set of x-rays will be in about 6 months?

    Ed
    Yes, six months. We’re really hoping to see curves below 40 (well lumbar for sure, if the top is a smidge over we won’t be too gutted) and a mostly mature spine.

    And yes, her determination is off the charts. Kid doesn’t know how to give up.

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