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  1. #1
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    New here

    My 13yo daughter was dxd with scoliosis at her routine physical in March. The pediatrician thought it was probably a 12 degree thoracic, 10 degree lumbar that we should keep an eye on. X-ray revealed a 54-T, 50-L. The orthopedic surgeon in our medical group referred her to an outside spine specialist and told us to expect surgery. Her consultation is next Thursday. This all happened within the span of three weeks, and she did not appear to bave any curve last year. I've tried to find anything that would suggest surgery isn't necessary, but I am a nursing student and haven't found anything evidence based. Ber Risser sign looks like a 2. Anyone think there are options besides surgery? I have her xray but dont know if I can post it.

  2. #2
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    Quote Originally Posted by ChrissysMom View Post
    My 13yo daughter was dxd with scoliosis at her routine physical in March. The pediatrician thought it was probably a 12 degree thoracic, 10 degree lumbar that we should keep an eye on. X-ray revealed a 54-T, 50-L. The orthopedic surgeon in our medical group referred her to an outside spine specialist and told us to expect surgery. Her consultation is next Thursday. This all happened within the span of three weeks, and she did not appear to bave any curve last year. I've tried to find anything that would suggest surgery isn't necessary, but I am a nursing student and haven't found anything evidence based. Ber Risser sign looks like a 2. Anyone think there are options besides surgery? I have her xray but dont know if I can post it.
    Hi...

    Welcome to the group, and sorry to hear about the diagnosis.

    If the xray was measured correctly, the odds that your daughter will need surgery are pretty great. However, assuming that she has already started her period, there probably is no big risk in waiting awhile to have surgery. You may read about some parents who have had their kids try therapies like Schroth. There is no long-term evidence that it works, but if you're the type of parent who feels they need to do SOMETHING, it may be worth a shot. I should warn you, however, that it's not inexpensive, and you and your daughter would have to be the type that will do exercises daily.

    Best of luck.

    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
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

  3. #3
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    I'm not a parent who is willing to put my kid through years of unproven treatments just so i can sleep at night. I have posted her X-ray on my blog. Wondering if it seems to match the dx. If this isn't allowed, please feel free to delete.

    christensbackblog.blogspot.com

  4. #4
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    Hi and welcome. No problem posting radiographs to the group or pointing people to your blog.

    There is no proven non-surgical treatment for curves in that range but there are non-fusion surgical things, specifically tethering but you need to move quickly as 55* is the upper limit. If she has enough growth left (Risser 2 might qualify) and if it works, she will not need fusion. That's the claim anyway, it's still experimental.

    Shriners in Philly or Newton in San Diego do tethering and maybe others.

    Good luck.
    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
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    The other thing is if you have reason to believe the curve actually did move very quickly and it wasn't just that it wasn't noticeable because it was balanced then you should ask about an MRI. My one kid's curve never moved slower than 5* a month and that triggered the MRI study.

    Sometimes fast-moving curves are associate with certain syndromes also.

    Good luck.
    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. #6
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    Wow - so sorry to hear the diagnosis - but better now than much later in life. Your experience sure sounds like ours - life is normal, then boom - regular checkup shows "severe scoliosis" (?!), our son hears the word surgery the day before his 14th birthday, we dive into researching options. Though we chose surgery sooner rather than later due to pain as well as wanting to get (his) inevitable outcome w as much recovery time before starting high school in the fall. Have you seen any scoli surgeons yet to go over options? Chrissy is beyond bracing, but "tethering" is something that's been mentioned here on the forum a lot lately - recommend checking into whether or not she is a candidate. But surgery w a great spine dr is not a horrible thing - I'm amazed & thankful every single day as to what our son is able to do so soon after, & that he's no longer in pain for past few months. Just as an example - his 3rd month surgery anniv was last week -he celebrated by leading us on a 5-mi roundtrip hike in the mountains. And he's back to drumming in band. This is just one small example of how resilient these kids are.
    Feel free to pm w any questions - and good luck to you.
    LeighAnn
    Mom of 14yo son diagnosed Oct 2011
    Surgery 1/3/12 w Dr. Geof Cronen,
    Tampa General Hospital T3 to L1
    Jacob's pre surg curves: T58 & L31 12/28/11
    photos & xrays in "First-Time Surgery" thread "Before & After"

  7. #7
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    Quote Originally Posted by LSKOCH5 View Post
    Wow - so sorry to hear the diagnosis - but better now than much later in life. Your experience sure sounds like ours - life is normal, then boom - regular checkup shows "severe scoliosis" (?!), our son hears the word surgery the day before his 14th birthday, we dive into researching options. Though we chose surgery sooner rather than later due to pain as well as wanting to get (his) inevitable outcome w as much recovery time before starting high school in the fall. Have you seen any scoli surgeons yet to go over options? Chrissy is beyond bracing, but "tethering" is something that's been mentioned here on the forum a lot lately - recommend checking into whether or not she is a candidate. But surgery w a great spine dr is not a horrible thing - I'm amazed & thankful every single day as to what our son is able to do so soon after, & that he's no longer in pain for past few months. Just as an example - his 3rd month surgery anniv was last week -he celebrated by leading us on a 5-mi roundtrip hike in the mountains. And he's back to drumming in band. This is just one small example of how resilient these kids are.
    Feel free to pm w any questions - and good luck to you.
    LeighAnn
    LeighAnn, it might be good to post your son's radiograph just in case new folks don't realize what can be done in some cases (i.e., back to straight, no scoliosis).
    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
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    Quote Originally Posted by Pooka1 View Post
    LeighAnn, it might be good to post your son's radiograph just in case new folks don't realize what can be done in some cases (i.e., back to straight, no scoliosis).
    Oh sorry! I see you pointed to it in your signature.
    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. #9
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    Overwhelmed

    Thank you all for your responses and for even taking the time to look at the X-ray. I am overwhelmed by your kindness. It's all been moving so quickly, and people keep implying or straight out telling me that I am rushing into surgery. To add to the drama, my 8yo is in this.minute having her x-ray because the dr. Noticed the same hump on her.If surgery is imminent for Chridten, I'd rather get it done now, while its nearly summer and shes still young.

  10. #10
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    Quote Originally Posted by ChrissysMom View Post
    Thank you all for your responses and for even taking the time to look at the X-ray. I am overwhelmed by your kindness. It's all been moving so quickly, and people keep implying or straight out telling me that I am rushing into surgery. To add to the drama, my 8yo is in this.minute having her x-ray because the dr. Noticed the same hump on her.If surgery is imminent for Chridten, I'd rather get it done now, while its nearly summer and shes still young.
    First, don't assume your other daughter will progress to surgery. Most kids don't.

    For your older daughter, you might want to list out pros and cons to doing surgery sooner versus later.

    I don't think it is technically correct to refer to "rushing into surgery" on a curve that is over the universally agreed on trigger level. Your concern about scheduling it over the summer is right on.

    The biggest issue by far in my opinion were it my child is that waiting may mean the difference between on surgery that stops at L3 for life or a first surgery that ends below L3 and a likely second surgery to sacrum. Were it me, I would be physically standing on desks to get a surgery date with a top surgeon if it means being able to end the fusion at L3 or above. Did they tell you your daughter has a double major curve? Is the lumbar structural?

    Kids with thoracic only curves have more breathing room to wait. Kids with thoracolumbar and lumbar curves do not seem to have that luxury. You need to find out from the surgeon where the fusion will end if you do it right away versus where it might end if you wait.

    Your daughter will bounce back quickly. Both my daughters were back in school school time 3-4 weeks after surgery. They look and feel normal.

    Good luck.
    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. #11
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    Quote Originally Posted by Pooka1 View Post
    First, don't assume your other daughter will progress to surgery. Most kids don't.

    For your older daughter, you might want to list out pros and cons to doing surgery sooner versus later.

    I don't think it is technically correct to refer to "rushing into surgery" on a curve that is over the universally agreed on trigger level. Your concern about scheduling it over the summer is right on.

    The biggest issue by far in my opinion were it my child is that waiting may mean the difference between on surgery that stops at L3 for life or a first surgery that ends below L3 and a likely second surgery to sacrum. Were it me, I would be physically standing on desks to get a surgery date with a top surgeon if it means being able to end the fusion at L3 or above. Did they tell you your daughter has a double major curve? Is the lumbar structural?

    Kids with thoracic only curves have more breathing room to wait. Kids with thoracolumbar and lumbar curves do not seem to have that luxury. You need to find out from the surgeon where the fusion will end if you do it right away versus where it might end if you wait.

    Your daughter will bounce back quickly. Both my daughters were back in school school time 3-4 weeks after surgery. They look and feel normal.

    Good luck.
    Thanks. Those are some excellent things for me to ask next Thursday. This will be the second orthopedic surgeon, because the in network Dr. wanted her referred out to a spine specialist. I haven't met the Dr. yet, but I researched him. There are no malpractice or license issues. He was a resident orthopedic surgeon at Loma Linda for ten years, and completed a fellowship at Beth Israel. I have heard he is a brilliant surgeon, but a bit of a snob. I don't care if he is snotty, as long as he fixes my kid, right?

  12. #12
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    Quote Originally Posted by ChrissysMom View Post
    Thanks. Those are some excellent things for me to ask next Thursday. This will be the second orthopedic surgeon, because the in network Dr. wanted her referred out to a spine specialist. I haven't met the Dr. yet, but I researched him. There are no malpractice or license issues. He was a resident orthopedic surgeon at Loma Linda for ten years, and completed a fellowship at Beth Israel. I have heard he is a brilliant surgeon, but a bit of a snob. I don't care if he is snotty, as long as he fixes my kid, right?
    Yes I agree with that! You need the best guy.

    I can tell you there are at least two cases on this group where the surgeon operated BELOW the trigger angle of 50* just to save levels in the lumbar. Also, there is a surgeon who goes the extra mile shaping the vertebrae below L3 just so he can end the fusion there on kids. I am a lay person but I can see where that train is going... it is important to try to save levels in the lumbar, especially in kids.

    You and your daughter can do this. You both will move on in life like my daughters and our family have done.
    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. #13
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    Relief!

    Quote Originally Posted by Pooka1 View Post
    First, don't assume your other daughter will progress to surgery. Most kids don't.

    For your older daughter, you might want to list out pros and cons to doing surgery sooner versus later.

    I don't think it is technically correct to refer to "rushing into surgery" on a curve that is over the universally agreed on trigger level. Your concern about scheduling it over the summer is right on.

    The biggest issue by far in my opinion were it my child is that waiting may mean the difference between on surgery that stops at L3 for life or a first surgery that ends below L3 and a likely second surgery to sacrum. Were it me, I would be physically standing on desks to get a surgery date with a top surgeon if it means being able to end the fusion at L3 or above. Did they tell you your daughter has a double major curve? Is the lumbar structural?

    Kids with thoracic only curves have more breathing room to wait. Kids with thoracolumbar and lumbar curves do not seem to have that luxury. You need to find out from the surgeon where the fusion will end if you do it right away versus where it might end if you wait.

    Your daughter will bounce back quickly. Both my daughters were back in school school time 3-4 weeks after surgery. They look and feel normal.

    Good luck.
    Good news! DD #1 and #3 had beautifully straight spines, and DD #1 is a Riser 5, so she is in the clear. Their X-rays were so beautiful. DD #1 said "it almost looks weird to see a straight spine." This is probably so weird, but I just kept marveling at their perfectly symmetrical rib cages and evenly spaced vertebrae. I've gotten so used to Christen's "S", that a normal spine seemed odd. DD #3 is only 8, and has a bit of a rotation, but still well within the wait and watch range.

  14. #14
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    Quote Originally Posted by ChrissysMom View Post
    Good news! DD #1 and #3 had beautifully straight spines, and DD #1 is a Riser 5, so she is in the clear. Their X-rays were so beautiful. DD #1 said "it almost looks weird to see a straight spine." This is probably so weird, but I just kept marveling at their perfectly symmetrical rib cages and evenly spaced vertebrae. I've gotten so used to Christen's "S", that a normal spine seemed odd. DD #3 is only 8, and has a bit of a rotation, but still well within the wait and watch range.
    Yes very good news!

    Scoliosis can also twist the minds of parents. :-)
    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. #15
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    Quote Originally Posted by Pooka1 View Post
    Oh sorry! I see you pointed to it in your signature.
    Can I put direct link in signature? & how? Thanks.
    Mom of 14yo son diagnosed Oct 2011
    Surgery 1/3/12 w Dr. Geof Cronen,
    Tampa General Hospital T3 to L1
    Jacob's pre surg curves: T58 & L31 12/28/11
    photos & xrays in "First-Time Surgery" thread "Before & After"

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