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Thread: DD recently diagnosed -- any suggestions?

  1. #61
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    By the way the Janzens seem to think that just because a kid is wearing a brace, the brace did something. They are not running a controlled study so they can't say how successful the treatment is. This is why controls are needed.

    The BrAIST study showed that about half the kids who didn't wear a brace were "successes" compared to 73% of the braced group. That means most of the "successes" in the braced group were not due to the brace. Then there were the bracing failures.

    I think they calculated that they had to treat about 4 kids just to get one "success" from bracing.

    Since some of the "successes" may have included kids with up to a 49* curve with up to 25% growth remaining, I think they should have also calculated the percent of kids who were "successes" at the end of the study but who will likely or almost certainly need surgery. That would be any kid with a >40* curve with no growth remaining or any kids with 35* curve or better with any growth remaining. Any kid with >30* curve at maturity is at risk of progressing to surgery in their life time.

    The main elephant in the room is what is the Janzeneseses base for calculating success rate? There is no way they are that successful when even BrAIST was not. There is something very funny here.
    Last edited by Pooka1; 10-19-2019 at 03:55 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."

  2. #62
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    Quote Originally Posted by Pooka1 View Post
    Since some of the "successes" may have included kids with up to a 49* curve with up to 25% growth remaining, I think they should have also calculated the percent of kids who were "successes" at the end of the study but who will likely or almost certainly need surgery. That would be any kid with a >40* curve with no growth remaining or any kids with 35* curve or better with any growth remaining. Any kid with >30* curve at maturity is at risk of progressing to surgery in their life time.
    This is only a minor quibble (I'm generally in agreement with Sharon that the BrAIST study didn't show nearly what the authors said it did), but I'd view postponing fusion on a teenager for a decade or two a success, especially for kids (like mine) with low lumbar curves that very likely would result in pretty big limitations if fused all the way down. At least personally, if bracing means that she gets to experience high school and college and early adulthood before being fused, I'm chalking that up as a win. (Plus, who knows what surgical techniques will be available in 15-20 years. Tethering is younger than that.)

  3. #63
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    Quote Originally Posted by Concerneddad View Post
    This is only a minor quibble (I'm generally in agreement with Sharon that the BrAIST study didn't show nearly what the authors said it did), but I'd view postponing fusion on a teenager for a decade or two a success, especially for kids (like mine) with low lumbar curves that very likely would result in pretty big limitations if fused all the way down. At least personally, if bracing means that she gets to experience high school and college and early adulthood before being fused, I'm chalking that up as a win. (Plus, who knows what surgical techniques will be available in 15-20 years. Tethering is younger than that.)
    Oh hey I completely agree and I think surgeons do also. They sometimes seem to not fuse below L3 or L4 on kids because they just don't want to. Dr. Hey talked about a case where he stood on his head to remodel the vertebra just to shorten a lumbar fusion on a teenager. These are double majors or L curves that would likely get fused to the pelvis in a mature adult.

    I think they need to get tethering up to speed yesterday for lumbar curves in not just kids but everyone.

    Progression potential in L curves is less than in T curves to the point that if a study is stacked with L curves in the treatment group and T curves in the control group the results are guaranteed to be nonsense. I think there was at least one such study though the stacking was not deliberate. I don't know where double majors fall in terms of progression likelihood but they are less likely to progress than T curves as far as I know. Nothing is more likely to progress than T curves at least in AIS.
    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. #64
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    Update

    Four month scan (about 27 hours OOB). Thoracic curve grew a little -- this doc previously measured it at 32, he now measures it at 38. I previously had it at 34 (as did another ped-ortho, which leads me to believe that this doc just lowballed it by a few degrees the first time he measured), and now at 36-37. He said not to worry about it because even absolute worst case it can be fused without going past T12 or L1 tops.

    Lumbar curve was a huge success. He previously had it at 35 and now has it at 36. Even better, I previously had it at 33-34 and now have it at 31-32. I've remeasured like five times and I'm pretty confident it is a couple of degrees smaller. Given her relative maturity, it's unlikely (and perhaps even highly unlikely) that it reaches surgical status, at least any time in the foreseeable future.

    Maturity is weird because her hips have different Rissers. The left hip is for sure Risser 3 and maybe even closing in on Risser 4. The right hip is at least Risser 2 with some patches of ossification that suggest maybe Risser 3. He thinks she has probably 4-6 months of slow, steady growth and then another 6-12 months of residual growth. Maybe another inch in all. She also has grown about 3/4" in four months, which is completely unsurprising because she's now at least 1/2" taller than me. Her basketball coaches will be thrilled.

    He wants her to keep bracing for six more months and anticipates that will be it. He is reasonably confident that she will hit maturity under 45, and probably under 40 (especially the lumbar). At this point we're mostly trying to save degrees to reduce the probability of adult progression. Bottom line: He thinks that it's a problem she'll need to monitor the rest of her life, but she probably won't have to have surgery as a teenager (and if she does ever have to have surgery, it likely won't be a low fusion).

  5. #65
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    Overall that dos sound like good news. The curves are balanced and probably not noticeable to people who don't know what to look for.

    Are you sure both curves are structural? There was a woman on here a while go with two curves, NEITHER of which was structural. Her T curve was fused anyway just to save future damage to her lumbar from the curve IIRC. Very VERY unusual. There is something about your daughter's case that made me think of that woman.
    Last edited by Pooka1; 12-12-2019 at 07:51 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."

  6. #66
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    Quote Originally Posted by Pooka1 View Post
    Overall that dos sound like good news. The curves are balanced and probably not noticeable to people who don't know what to look for.

    Are you sure both curves are structural? There was a woman on here a while go with two curves, NEITHER of which was structural. Her T curve was fused anyway just to save future damage to her lumbar from the curve IIRC. Very VERY unusual. There is something about your daughter's case that made me think of that woman.
    Yes, the only signs of the curves are the humps when she bends over and her left hip is slightly higher. You'd have to be looking for it to notice.

    No, we don't know if one or both or neither is structural. The lumbar was slightly bigger four months ago, now the thoracic is slightly bigger. The fact that the brace only corrected 15-20% is probably evidence that they're both structural, but it could also just be a crappy brace. Based on her maturity and bracing results so far, I'm expecting the top curve to grow a few more degrees in six months, and then she probably hits maturity (solid Risser 4/Sanders 7) around 40T/35L, which I'm OK with. She may want to fuse the top curve in her 30s (or late 20s or early 40s), but that's an adult daughter decision.

  7. #67
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    Quote Originally Posted by Concerneddad View Post
    Yes, the only signs of the curves are the humps when she bends over and her left hip is slightly higher. You'd have to be looking for it to notice.

    No, we don't know if one or both or neither is structural. The lumbar was slightly bigger four months ago, now the thoracic is slightly bigger. The fact that the brace only corrected 15-20% is probably evidence that they're both structural, but it could also just be a crappy brace. Based on her maturity and bracing results so far, I'm expecting the top curve to grow a few more degrees in six months, and then she probably hits maturity (solid Risser 4/Sanders 7) around 40T/35L, which I'm OK with. She may want to fuse the top curve in her 30s (or late 20s or early 40s), but that's an adult daughter decision.
    Did they ever do a bending xray? That's the way to determine if a curve is structural.

    CurveCorrection.jpg
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

  8. #68
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    Quote Originally Posted by LindaRacine View Post
    Did they ever do a bending xray? That's the way to determine if a curve is structural.

    CurveCorrection.jpg
    No, no bending x-rays. If the curves had jumped to surgical territory I was going to ask for them today because that would matter for VBT. But they're still sub-surgical.

  9. #69
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    Quote Originally Posted by Concerneddad View Post
    No, no bending x-rays. If the curves had jumped to surgical territory I was going to ask for them today because that would matter for VBT. But they're still sub-surgical.
    On the tethering subject, what Cobbs are they looking for?

    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

  10. #70
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    It just seems to me if they are not structural that you could get the T curve tethered below the threshold (because it is not the usual case) which would drive the lumbar pretty straight hopefully and avoid disc damage. She wouldn't notice any restriction in her T curve and you save the lumbar.

    It's a long shot.

    The poster was king14.

    http://www.scoliosis.org/forum/showt...ghlight=king14

    In her second thread she wrote...

    http://www.scoliosis.org/forum/showt...hed&highlight=


    with Dr. B today and I don't have any definitive answers except to meet with his partner and then decide what the best options are for me.

    Thoracic 56 - bends to a 17 degree

    Lumbar 53 - bends to a 4 degree.


    Classification wise, neither are structural because they both bend to less than 25... So I'm waiting to have a follow up appt with both of them, so they can pow wow and figure out next steps...
    And

    So verdict thus far is T4-L1 to try and save as much of the lumbar spine as possible.
    Here are all her threads she started...

    http://www.scoliosis.org/forum/searc...archid=1746743
    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."

  11. #71
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    Blast from the past.

    You know King is an actress.....We do have someone from Hollwood here!

    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

  12. #72
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    No I didn't know she is an actress. I know she does "mudders" which impressed the heck out of me.
    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. #73
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    Quote Originally Posted by titaniumed View Post
    On the tethering subject, what Cobbs are they looking for?

    Ed
    40 seems to be the norm. Some docs will do high 30s, *especially* lumbar. I think with my daughter, he didn't suggest it because (1) at Risser 3, she's probably outside the maturity criteria (though he previously indicated that he'd be willing to tether a more mature spine if the curves were smaller and didn't need much correction), and (2) since we're talking the top curve that's in the high 30s, it's not as urgent to avoid fusion.

    I may drop him a line along the lines of "are you sure we shouldn't be considering VBT" though.

  14. #74
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    Quote Originally Posted by Pooka1 View Post
    It just seems to me if they are not structural that you could get the T curve tethered below the threshold (because it is not the usual case) which would drive the lumbar pretty straight hopefully and avoid disc damage. She wouldn't notice any restriction in her T curve and you save the lumbar.

    It's a long shot.

    The poster was king14.

    http://www.scoliosis.org/forum/showt...ghlight=king14

    In her second thread she wrote...

    http://www.scoliosis.org/forum/showt...hed&highlight=




    And



    Here are all her threads she started...

    http://www.scoliosis.org/forum/searc...archid=1746743
    Thanks for the new rabbit hole to go down!

    My daughter isn't super flexible (in fact, on the basketball court, she's generally known as the big, stiff, slow white girl -- the one who is deadly from the three point line, though), and again, the fact that the brace could only push the curves into the high 20s probably suggests that the curves aren't very bendable. But none of that is dispositive or anything, and as I mentioned to Ed, it does make sense to ask the doc whether tethering the top curve is something we should consider. At her maturity it's kind of now-or-never if we did want to do it.

  15. #75
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    Quote Originally Posted by Concerneddad View Post
    I may drop him a line along the lines of "are you sure we shouldn't be considering VBT" though.
    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 50 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
    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

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