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Thread: DD recently diagnosed -- any suggestions?

  1. #121
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    Quote Originally Posted by Pooka1 View Post
    Oh hey sorry about losing the story line there! Yes high school. :-)

    It must be hard trying to learn under these conditions but it can be done. My colleague's daughter managed to complete a boatload of AP classes and got into UNC. Very cool.
    You know, I will say that I've been impressed with how the high school has done hybrid learning. It's mostly a question of scheduling -- making sure that the kids have enough work to do offline on homework days. Much better than my elementary-aged twins were all remote (it's just really hard for younger kids to learn remotely). And, like I said, the fact that she has practice or games six days a week means that she gets out and interacts with other kids almost every day, which is huge. She seems really happy.

  2. #122
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    Quote Originally Posted by Concerneddad View Post
    Freshman year is going as well as could be hoped for under the circumstances. In-person school two days a week (two homework days and one remote learning day), and her HS basketball team is giving her a good outlet to be around kids her own age almost every day. No back pain, and no noticeable height loss except maybe after pounding on the court at practice for two hours.

    Speaking of, she's killing it. Started every varsity game as a freshman, averaging double figures, leading the team in scoring, and she's in the top five in the state in scoring for freshmen. The season is about half over. We've gotten to go to about half the games and had to watch half on streaming. I spent one night watching the second half of a game from a window outside the gym when it was like 10 degrees out when the school camera wasn't working. It was worth it!

    Hope everyone is doing well.
    I hate to rain on your parade, but do the kids play sports in masks? They certainly don't socially distance.

  3. #123
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    Quote Originally Posted by Tina_R View Post
    I hate to rain on your parade, but do the kids play sports in masks? They certainly don't socially distance.
    They play in masks. There really hasn't been much evidence of spread on the court, which surprises me a little. What I've been told is that the public health types think that the masks really help, plus although it's an indoor sport, it's played in big huge gyms that more mimic the outdoors. It's also something where the kids aren't actually that close to any other kid for more than 5-10 seconds at a time.

    They also allow minimal or no spectators. That's where the real risk is -- the major outbreaks this past summer at kids' sports events came from spectators and not the participants.

  4. #124
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    Yearly check-up

    Doc measured 40T/32L. He remeasured the last one from November 2020 since he used T8 and not T9 (which is slightly more crooked) on that one and came up with 39T/32L -- so he said the slight increase could just be measurement variance. I haven't been able to print out in high definition and measure myself, but just using the printout that he gave us, I get 39T/30L -- right on par with the last one (I got 39T/32L on that one). So, she appears to be pretty stable. Late Risser 4 -- the gaps on the hips have ALMOST closed but not quite yet.

    He wants to see her one last time in a year just to be sure that there is no unexpected progression -- but he said that it was "highly unlikely" and she would be "one in a thousand" if so.

    Now on to high school basketball season!

  5. #125
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    Hey Concerneddad, that's very good news.

    I am copying/pasting results from a SRS talk along with the link which doesn't go directly to the talk but here are the results... point #4 is relevant to your daughter...

    http://srs.gmetonline.com/ViewPresen...onpackageid=12

    1. post brace progression rate higher than natural history

    2. Curve magnitude at completion ALONE is predictive of post-brace surgical progression. (This is what the BrAIST authors need to address in their results. Because they didn't publish the post-bracing curve magnitudes, and because curves up to 49* with up to 25% growth remaining were bracing "successes", it is IMPOSSIBLE to use their results to determine how much bracing avoids surgery.)

    3. >80% of patients who completed bracing at > or = 45* reached post-brace surgical progression.

    4. no patient who completed bracing with < 40* failed.

    5. no patient with brace initiation at Risser II had post-brace surgical progression.
    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. #126
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    Quote Originally Posted by Pooka1 View Post
    Hey Concerneddad, that's very good news.

    I am copying/pasting results from a SRS talk along with the link which doesn't go directly to the talk but here are the results... point #4 is relevant to your daughter...

    http://srs.gmetonline.com/ViewPresen...onpackageid=12

    1. post brace progression rate higher than natural history

    2. Curve magnitude at completion ALONE is predictive of post-brace surgical progression. (This is what the BrAIST authors need to address in their results. Because they didn't publish the post-bracing curve magnitudes, and because curves up to 49* with up to 25% growth remaining were bracing "successes", it is IMPOSSIBLE to use their results to determine how much bracing avoids surgery.)

    3. >80% of patients who completed bracing at > or = 45* reached post-brace surgical progression.

    4. no patient who completed bracing with < 40* failed.

    5. no patient with brace initiation at Risser II had post-brace surgical progression.
    Yep, she was at 39 in May 2020 when she started weaning off of bracing, and also 39 in November 2020, so she barely slipped under that wire. She also may have been Risser 2 when she started -- that was when she had a bad scan and they couldn't see the outside of the hips and all they could tell was that she wasn't Risser 3 or 4.

    I'm actually a little curious about the overlap between bracing being initiated at Risser 2 and everyone who stopped bracing under 40 being successful. Given that they wouldn't have started bracing above 40, I wonder whether there was a large cohort of Risser 2+ kids who were bracing successes. And if so, whether that just means that if you make it to Risser 2 with a < 40 curve, you are mature enough that it is unlikely that your curve will progress to > 49 regardless of what you do.

  7. #127
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    Also, one thing that the doc did say that I hadn't heard before: her rotation is a lot less than he'd expect in a 40 degree curve. He said that he'd normally expect 20+ degrees, but hers is only 8-9 degrees. He said that this is often a good indication as to whether it will progress as an adult -- if he has kids with smaller curves but a lot of rotation, he'll be concerned that even if they hit maturity in the high 20s or 30s, they'll still progress a lot more quickly. I haven't seen that in the literature before, so no clue if it's just his experience or whether that's a documented thing. (He also said that the fact that her curves are reasonably well-balanced is a big plus, because those also tend to progress less/more slowly in adulthood, but I had heard that before.)

  8. #128
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    Interesting comment re rotation. Both my daughters had similarly large curves but one was sort of pure thoracic which was highly and obviously rotated to the naked eye and the other had a false double (looked like a double but the lumbar bent out to single digits) and did not appear to have much rotation to the naked eye. It may be doubles can only rotate so much given the change of direction to the other curve.

    With my one daughter, there was only a small compensatory curve which may have been incompetent to prevent the huge T rotation. The surgeon did not get our hopes up on fixing the rotation completely but he must have been hedging because you can't see it unless you know what to look for. I think they were shooting for the moon as she had a neuro episode when they woke her so they may have backed off on the rotation correction. They did not back off on the straightening as she came out less than 10 deg no scoliosis per the rad report.
    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. #129
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    Quote Originally Posted by Concerneddad View Post
    Also, one thing that the doc did say that I hadn't heard before: her rotation is a lot less than he'd expect in a 40 degree curve. He said that he'd normally expect 20+ degrees, but hers is only 8-9 degrees. He said that this is often a good indication as to whether it will progress as an adult -- if he has kids with smaller curves but a lot of rotation, he'll be concerned that even if they hit maturity in the high 20s or 30s, they'll still progress a lot more quickly. I haven't seen that in the literature before, so no clue if it's just his experience or whether that's a documented thing. (He also said that the fact that her curves are reasonably well-balanced is a big plus, because those also tend to progress less/more slowly in adulthood, but I had heard that before.)
    CD, Thats very good news...

    8-9 degrees rotation....not bad. Below is my CT to show what rotation looks like in scoliosis (After surgery) I dont know if you have seen this. You can see the screws and the angle of about 30 degrees at the apex "after correction". Of course this was starting with a 70/70 S curve. My surgeon drove those screws in almost sideways....(Picturing this on the operating table) The left screw looks like it's at about a 45 degree angle. I don't know what my rotation was before surgery, but it was bad. The view is looking "feet to sky".

    The CT was shot looking for gall stones, not a scoliosis problem.

    Is she an "S" curve? I think I might have asked that question but don't remember.

    Here is a 2008 paper on Rotation measurement....Starting With Dr Cobb (1945?) using spinous processes. (Old School) and other methods used through the years.
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2587463/

    Today I did some searching for an EOS machine (Low Dose radiation) for someone in NJ. (New School) The company has a locator map.
    https://www.hss.edu/condition-list_eos-imaging.asp

    https://www.youtube.com/watch?v=nNSu...el=WVUMedicine

    Was she shot in an EOS machine?.....I would imagine the software calculates the vertebral rotation...(with more accuracy).

    Ed
    Attached Images Attached Images
    Last edited by titaniumed; 11-11-2021 at 11:00 PM.
    49 yr old male, now 63, the new 64...
    Pre surgery curves T70,L70
    ALIF/PSA 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. #130
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    Quote Originally Posted by Pooka1 View Post
    With my one daughter, there was only a small compensatory curve which may have been incompetent to prevent the huge T rotation. The surgeon did not get our hopes up on fixing the rotation completely but he must have been hedging because you can't see it unless you know what to look for. I think they were shooting for the moon as she had a neuro episode when they woke her so they may have backed off on the rotation correction. They did not back off on the straightening as she came out less than 10 deg no scoliosis per the rad report.
    Interesting.....They did a wake up test? (In 2008) Do they still do these today?

    My surgeon woke me up for 10 seconds (between surgeries) to get permission to continue on to the 2nd surgery. (By Law) This only proved that the jaw worked, not the toes. (Smiley face)

    They did not wake me up for the 2nd surgery.

    Ed
    49 yr old male, now 63, the new 64...
    Pre surgery curves T70,L70
    ALIF/PSA 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. #131
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    I think they did wake her up but I don't have the notes. Are there other ways to check?
    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."

  12. #132
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    Yes, SSEP and MEP spinal monitoring

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2072895/

    History of spinal cord monitoring

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2072901/

    Some worry about waking up but for me, it was like a dream....I woke up and saw my surgeons face with the mask, the next thing I was out. I didn't feel a thing.

    Ed
    49 yr old male, now 63, the new 64...
    Pre surgery curves T70,L70
    ALIF/PSA 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

  13. #133
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    Quote Originally Posted by titaniumed View Post
    CD, Thats very good news...

    Is she an "S" curve? I think I might have asked that question but don't remember.

    This is actually an interesting question. She is an S-curve, and initially they thought it was a true double curve because both were about the same at diagnosis. But because the top curve is now about 25% bigger, much more displaced, and a bunch more rotated, the doc thinks that it's probably a primary thoracolumbar curve, with a mostly compensatory lumbar curve at the bottom. In the unlikely event that she did need to be fused in the next few years, he thinks that they would just need to do the top one. The only problem there is that even the top curve is low enough that they'd probably need to go to L2, which is when the bad stuff starts to happen. (If it came to that, we'd probably see if there was an alternative that would spare that level like an anterior approach or a hybrid.)

  14. #134
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    I thought the way they tell if it is structural is how much it bends out, no? Did your surgeon do bending films?
    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."

  15. #135
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    Quote Originally Posted by titaniumed View Post

    My surgeon woke me up for 10 seconds (between surgeries) to get permission to continue on to the 2nd surgery. (By Law) This only proved that the jaw worked, not the toes. (Smiley face)
    Nope, no such law (then or now). The only reason they'd wake a patient up for permission is if they either didn't know they'd stage the surgery, or they forgot to get permission prior to anesthesia.
    Last edited by LindaRacine; 11-12-2021 at 01:55 PM.
    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

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