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Thread: DD recently diagnosed -- any suggestions?

  1. #16
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    Concerneddad,

    Based on what you wrote about scheduling, I hope the appointment today goes well.

    I wanted to add I really like your attitude. I would single you out as having an extremely straightforward and reasoned approach to your daughter's treatment. That is hard to do. I am guessing you have some science background.

    One point about the comment of only 1 in 5 patients are accepted for VBT Ti Ed mentioned... that is for one surgeon (Newton). He seems to be picking the best candidates so the procedure will be successful. There can be a fairly high rate of complications even among these "best" candidates. I have gotten the impression that the ABC doctors have a much higher acceptance rate likely because they are doing osteotomies among other reasons. I wonder how their complication rate compares to Newton's rate.
    Last edited by Pooka1; 09-16-2019 at 07:03 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."

  2. #17
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    Update

    Thanks for the kind words, Sharon. Yes, I have a science degree (well, one of them is, at least) and for much of my career have worked in a health care-adjacent field.

    We saw the second doctor this morning. DD liked him better -- he took much more time to explain a lot of stuff to her (plus he is younger and played basketball too!). He measured the curves from the same x-ray at 32T/35L. He also gave a much more definitive assessment of her skeletal maturity -- Risser 1-2 (ossification right up to the 1/2 boundary) and Sanders 5. Likely 12-18 months of growth left, probably closer to the latter. He said that although she's a bit on the mature side, she'd probably be a good candidate for VBT because her curves are small enough that she wouldn't need a ton of growing to pull them straight, and her likely remaining growth may well be enough.

    Given that there is a bit of a ticking clock, he recommended checking again four months from the last x-ray (so mid December), and bracing in the meantime. If there is any progression *at all* at that point -- even just five degrees or so -- we seriously consider VBT, even if the curves are a bit shy of 40, and even though she'd be in the low end of what is appropriate for the procedure. His rationale was that the bottom curve is big enough (relative to the top) that they couldn't not fuse it if she progressed to needing fusion, and it's low enough that they'd probably have to go down to L4. According to him, that's a big enough deal -- especially in light of the fact that she's a competitive athlete with possible college aspirations -- that it would be reasonable to err on the side of VBT.

    Thanks again all, and I'll keep you updated. Her next scan is the in-brace one in a few weeks to make sure it's pushing in the right places. She's building up to 16-17 hours a day (currently at 10). She seemed to be getting used to it, though we forgot to take her tank tops out of the wash before drying, and now they shrank a little and are rubbing the wrong way. I'll probably get her more tonight.

  3. #18
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    Question

    So doing a little research, it seems relatively rare that they caught her in Sanders 5 -- kids apparently blow through that quickly, which is why the big progression studies only have a couple of Sanders 5 cases. That's fine and all, but I'm a little worried because a lot of docs will only do VBT on Sanders 5 and below. Her doc just says that patients have to be "skeletally immature" and doesn't specify further.

    I'm a little concerned that by December (when she has her next check) she will be early Sanders 6, and thus may be too mature for the docs that will only do Sanders 5 and below. OTOH, if he thinks she has enough growth to pull a smaller curve straight left now, it's hard to think that she wouldn't in 2-3 months, even if she technically matures to very early Sanders 6.

    So, question -- should I send her doc a note asking about this? I don't want to bother him or come across like an annoying parent, but on the other hand, I do want to put it on his radar so there isn't a nasty surprise in a few months. Theoretically we could also bump the check up a month, though I get that at some point there isn't enough time between scans to see if the curve is growing (even if it's growing by a lot).

  4. #19
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    You are dealing with opposing things which you completely understand. You can send a note but I don't think anything will change given the ~40* trigger angle for VBT versus her skeletal maturity reaching a threshold for VBT. One of those two considerations will govern what happens. It might be different if her curves were moving fast. I guess you only have the one set so you don't know how fast they are moving. My one daughter's curve moved ~5 degrees a month for several months. Her twin's curve moved almost as fast. I hope your daughter is not in that category also.

    I don't understand why they were talking ever having to fuse her lumbar. I would hope they stop doing that in kids and always try a tether first. My one kid may need an extension of her T fusion into the lumbar at some point but I told her she should try to find someone who will try tethering first. She may never need more surgery and maybe by the time she might need surgery, they will be tethering all lumbars. Who knows.
    Last edited by Pooka1; 09-24-2019 at 03:54 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."

  5. #20
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    Thanks, Sharon. Yeah, he said that it's "possible" that she'd need to be fused down to L4 if it comes to it. He said it in a way that I interpreted as "yeah, that's what I'd probably have to do." It's understandable -- her lumbar curve is just so low, and it's probably a major curve, so it's not like they can just do the thoracic and hope the lumbar straightens out. The lumbar is the problem! I actually think that's why he'd be willing to tether despite her being *relatively* mature -- the two alternatives are doing nothing to a mid 30s curve that's probably going to get worse or fusing down to L4, and both of those really suck.

    I'm still undecided whether I'm going to say something. He's a smart guy. He's already implied that the only reason he'd do VBT in someone at her maturity (again, Risser 1-2/Sanders 5 -- so she still has a good bit of growing!) is that the curves are small so she doesn't need a ton of growth to straighten them. I assume he's aware that kids pass through Sanders 5 in a blink of an eye. He's got to know that she easily could be Sanders 6 in 2.5 months. OTOH, it might make sense to put down a marker so that everyone is on the same page that this might happen.

    Oh well. So much to worry about.

    PS -- I have twins as well. Boys, 9 yo.

  6. #21
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    I agree you should probably lay this out in an email to the surgeon and get some response that makes you feel better about the present course you are on. Hopefully there will be explicit acknowledgement of the pros and cons of doing something versus not beyond what he told you. Tell him you need to toss it around some more because you need more info to feel like you are on the right path.

    Seen this? Although there are large ranges, the (median?) chance of progressing to >50* with a Lenke 3 at 35* is zero.

    https://www.semanticscholar.org/pape...e112/figure/10

    Seems like they are reluctant to do anything because the chances are low she will progress. Just a guess.
    Last edited by Pooka1; 09-23-2019 at 07:31 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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    Quote Originally Posted by Pooka1 View Post
    I agree you should probably lay this out in an email to the surgeon and get some response that makes you feel better about the present course you are on. Hopefully there will be explicit acknowledgement of the pros and cons of doing something versus not beyond what he told you. Tell him you need to toss it around some more because you need more info to feel like you are on the right path.

    Seen this? Although there are large ranges, the (median?) chance of progressing to >50* with a Lenke 3 at 35* is zero.

    https://www.semanticscholar.org/pape...e112/figure/10

    Seems like they are reluctant to do anything because the chances are low she will progress. Just a guess.
    Actually, I think I've convinced myself not to say anything. I don't think I'd be raising any points that they don't already know. She's just in a place where the curves are a bit too small to do anything but brace, and by the time we know whether they'll progress past that, she may well be too mature for non-fusion laternatives (at least based on current medical knowledge and best practices). It's not ideal, but there it is. We can only do what we can, which at the moment is brace and hope for the best.

    That study is really interesting for a couple of reasons. They're running a logistic projection to identify the Sanders vs. Cobb angle at which surgery is indicated -- basically trying to figure out when they should operate on even low (30*-35*) angles. It's not assessing risk of progression to >50*. If you actually look at the raw data, it's kind of weird. The sole 35*/Sanders 5 case (and there were only seven Sanders 5 kids in the whole study, demonstrating that kids fly through the stage) progressed to surgery, as did 3/5 of the 35*/Sanders 6 cases -- but then only 1/9 35*/Sanders 4 cases progressed! I think what this is saying is that once you hit the mid Sanders stages (4-6), curves progress or not based on something independent of relativity maturity by that point (or, at least, maturity is far less important than something else that we don't know).

    https://www.semanticscholar.org/pape...423c3/figure/5

    Anyway, I completely agree that I'm probably dwelling on stuff that isn't super productive. Grrrr.

  8. #23
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    Well you have me there... I did not read the article. I will. But with those n's, I am not sure why it was publishable. Scoliosis is so variable that I am not sure a study could be run with sufficient patients.

    ETA... I can't find the article online. I requested it from the authors thru Researchgate. Let's see if they give it to me.
    Last edited by Pooka1; 09-23-2019 at 09:16 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."

  9. #24
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    I wrote: "Just as an aside, I am glad they showed C.I.s and not p's. P hacking is rampant and some top medical journals are not only discouraging publishing p stats but some have banned it."

    Those are p's. I don't use them much and thought they were always shown as lower case so I assumed "P" was something else.

    I read the paper and have notes written on it but can't find it. I think it is at work. I may comment further. I think this was the study that was good in that they had one person reading all the radiographers.
    Last edited by Pooka1; 10-11-2019 at 06:08 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."

  10. #25
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    Well, a little late with this post...

    You could send an e-mail, but since he has set the 3 month appointment from the initial visit, probably best now to just wait and see. X-rays can vary +/-5 degrees, so this can make things a little harder on making it a slam dunk decision over 3 months unless she moves a substantial amount.

    With the new FDA approval last month, the insurance companies "might" have new parameters set... Usually, the insurance companies have a few requirements that they want, things like bracing history, curve progression and so forth. I cant imagine them "not" having a minimum Cobb requirement. 40 degrees seems logical regardless of maturity. These parameters will probably run similar to fusion surgery parameters.

    Below are CDC growth charts for girls and boys. Girls pretty much stop growing at age 16, boys still keep growing after age 16.

    If you blow up the chart and look at the top growth curve on girls, from 13-1/2 to maturity, it looks like she only has 1 more inch to go. (with a straight spine)
    https://www.cdc.gov/growthcharts/dat...l/cj41c072.pdf
    https://www.cdc.gov/growthcharts/dat...l/cj41c021.pdf

    Comparing Sanders with Risser
    https://pediatrics.aappublications.o...ngAbstract/647

    Ed
    49 yr old male, now 60, the new 55...
    Pre surgery curves C12,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

  11. #26
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    Looking at those charts....

    I remember having problems doing sit-ups in gym at age 10. I would sit up to one side.....Age 10 is accurate since we moved to a new home and I remember that date, it was also in a new school. 5th grade.

    There were no clues, humps, or shoulder lean etc and no x-rays shot at that time.

    I didn't say anything....

    Ed
    49 yr old male, now 60, the new 55...
    Pre surgery curves C12,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. #27
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    The author sent me the paper. I will read it as soon as possible.
    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. #28
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    Quote Originally Posted by titaniumed View Post

    Below are CDC growth charts for girls and boys. Girls pretty much stop growing at age 16, boys still keep growing after age 16.

    If you blow up the chart and look at the top growth curve on girls, from 13-1/2 to maturity, it looks like she only has 1 more inch to go. (with a straight spine)
    https://www.cdc.gov/growthcharts/dat...l/cj41c072.pdf
    https://www.cdc.gov/growthcharts/dat...l/cj41c021.pdf

    Comparing Sanders with Risser
    https://pediatrics.aappublications.o...ngAbstract/647

    Ed
    I've always thought those growth charts were spooky accurate. DD has been pegged just above the 97% line since the minute she was born and really hasn't wavered in the 13 years since. (She actually just turned 13 last month -- according to growth charts, scans, pretty much everything, has about 1.5 inches left to go. But point taken. It's not a ton of growth remaining.)

  14. #29
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    Sharon nailed it in post #19. It will be interesting to see what happens at the next x-ray.

    The charts, yes, they are spooky. I was looking at those last night till my eye's were bleeding....

    And you wonder what went wrong? When did it start? What did I miss? Was it 10 degrees at age 10? No school screening, but then what can they do? Not much except try bracing on small curves to hold.

    There are a TON of old bracers here on this forum...If Linda started a sticky brace thread, most of us (Idiopathics) would chime in. Hard braces are an acquired taste. I still have 2 braces in my closet, someday, I will make a planter out of them. They remind me how thin I was in the old days...Since I grew 4 Inches after surgery, my BMI allowed me to eat a lot more. I have a whole list of scoliosis excuses, and I do use them. (smiley face)

    My friends daughter is 13 and they mentioned scoliosis to me so I started looking. 8 degrees on the x-ray, I couldn't find anything at all. Nothing. No asymmetry, no humps, no shoulder lean, nothing at all. They weren't looking for scoliosis since she has had kidney stone problems. (Huge 1" stone, surgically removed from posterior surgery) It seems many of us are discovered by accident doing an x-ray looking for other things...

    The best thing that can happen is that she does not progress, and needs no surgery at all.

    Ed
    49 yr old male, now 60, the new 55...
    Pre surgery curves C12,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

  15. #30
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    I have never understood the use of height measurements in the context of scoliosis. The height is a net function of linear growth of the skeleton minus the "collapse" rate of the increasing curvature. When my one daughter's curve was increasing at about 5 degrees a month, she was also in a growth spurt (hence the curvature rate). We weren't measuring her height but I doubt she grew and may even have shrunk. She gained about 2 inches when she was hyper corrected. That reflects the true growth and could only be discerned after the fact of correction, not any measurement taken during the growth spurt.
    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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