Page 1 of 2 12 LastLast
Results 1 to 15 of 16

Thread: Appropriate advice for new scoliosis diagnosis in 11 year old dd?

  1. #1
    Join Date
    Sep 2011
    Posts
    8

    Question Appropriate advice for new scoliosis diagnosis in 11 year old dd?

    Hi all, just looking for feedback in our situation. Our 11 yo dd was just diagnosed with IS at Leatherman Spine in Louisville. She has a 14% curve at this point. Doctor says to return every 3-4 months during her growing period for Xrays. This frequency is because she is growing rapidly and he says we don't want to let it get away from us. If it gets significantly worse he indicated bracing as the option and then surgery if it went past 25 %. Does this all sound right to you? And does anyone have info about any alternative ways of treating IS? Also, can anyone direct me to actual studies about the efficacy of bracing? ....from what I've already read it sounds like it's not all that effective long term.

    Also, last but not least, is there a way to protect my dd from Xray exposure during these repeated Xrays? The curvature is in her lumbar area, and the technician said shielding is not possible.

    Thank you so much in advance for input.
    Loboandbobo

  2. #2
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    7,213
    Hi...

    It does sound like normal treatment. You'll find dozens of alternative treatments if you search the internet. Unfortunately, very few have any research at all, and none have any long-term followup. There are a lot of brace studies, especially in terms of the Boston brace. You can search PubMed (http://www.pubmed.com) and type in the search term scoliosis brace, and you'll find more studies than you can possibly imagine.

    I understand why they can't use a gonadal shield on your daughter, but if they're doing full spine X-rays, they should be shielding her breasts. Also, they're hopefully using a low dose radiation machine.

    The good news for you is that, assuming your daughter is close to menses, there's relatively little risk that her curve will progress. Hope she doesn't beat the odds! If she does beat the odds, and her curve gets to 25 degrees, I would definitely recommend the ScoliScore test.

    Regards,
    Linda
    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

  3. #3
    Join Date
    Jan 2008
    Location
    NC
    Posts
    9,317
    Quote Originally Posted by loboandbobo View Post
    If it gets significantly worse he indicated bracing as the option and then surgery if it went past 25 %. Does this all sound right to you?

    And does anyone have info about any alternative ways of treating IS? Also, can anyone direct me to actual studies about the efficacy of bracing? ....from what I've already read it sounds like it's not all that effective long term.
    Hi. I'm sorry about your daughter's diagnosis. The good news is your daughter's curve is small. Most small curves never need treatment and a fair percentage resolve on their own, sometimes completely.

    You seem to have come up to speed because you are asking all the right questions, the same questions some surgeons are asking (for example, is bracing effective?). The bracing literature is not very clean and a large scale study (BrAIST) is being conducted now to try to get a clearer answer about bracing efficacy. And even that study won't answer whether all bracing only delays rather than avoids surgery for people who are going to progress. The reason why this is even an issue is that brace treatment (23 hours hard bracing) is so difficult mentally and physically and why there are ethical issues of using it when the evidence of efficacy isn't clear.

    Surgery is NOT indicated once the curve goes past 25*. It is indicated when it goes past 50* (or so) or when it is past 40* (or so) and moving like a freight train as was the case of my one daughter.

    Watch and wait for curves under 25*, bracing for curves up to the surgical range, and surgery are the only medically-recommended treatments. PT is also considered a rational conservative treatment in some cases as evidenced by legitimate researchers and surgeons studying it.

    Alternative treatments (chiro, vibrating chairs, modified handheld jigsaws, little massagers, Schroth, rain drop therapy, chanting, etc.) are those dreamed up by untrained lay people. There is no evidence for their efficacy or it would be medicine.

    Science is the only game in town, especially when the stakes are high as in AIS.

    Last, I second the suggestion to get Scoliscore if/when appropriate. Ask your orthopedic surgeon about it. If she has a score indicating her curve won't progress, she may escape bracing. There is some evidence the majority of kids who wore braces never needed them to avoid progression. So again it's an ethics issue.

    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."

  4. #4
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,158

    Gonadal shielding IS possible-demand it

    Hi there,

    I am so sorry to hear of your daughter's diagnosis. Hopefully, starting with such a small curve, it will not progress. As Sharon said above, surgery is not usually considered until the curve is above 40-45 degrees. A few children (including my daughter) have fusionless VBS surgery at lower numbers (curves under 35 degrees), but there are typically younger children.

    I really want to comment on the shielding however. It IS entirely possible and should be considered mandatory to shield your daughter. It can be done, just the techs hate to do it because they are afraid they will cover up view of part of the spine and have to repeat the x-ray. I have had to struggle and insist to have my daughter shielded properly since she was diagnosed at age 6. I have talked to many radiology techs about and it IS possible. Like I said, you will just have to politely insist on it. Please do for your daughter's sake. You will be told it's low-dose radiation and "nothing to worry about" but there is no excuse for not shielding gonads and breasts properly. The techs may need to use tape to hold the shields in the proper position. If the techs refuse I would take your daughter to another facility. Period.

    Good luck,
    Gayle, age 50
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

    also mom of Torrey, 12 y/o son, 16* T, stable

  5. #5
    Join Date
    Oct 2008
    Posts
    299
    I had to talk to the doctor about the shielding issue. She now writes it on the order so there is no dispute when we get to x-ray. However, I had to purchase and bring my own shield, as they don't have any.
    mamandcrm

    G diagnosed 6/08 at almost 7 with 25*
    Providence night brace, increased to 35*
    Rigo-Cheneau brace full-time 12/08-4/10
    14* at 10/09 OOB x-ray
    11* at 4/10 OOB x-ray
    Wearing R-C part-time since 4/10
    latest OOB xray 5/14 13*
    currently going on 13 yrs old

    I no longer participate in this forum though I will update signature from time to time with status

  6. #6
    Join Date
    Sep 2011
    Posts
    8

    where to buy shielding?

    Quote Originally Posted by mamandcrm View Post
    I had to talk to the doctor about the shielding issue. She now writes it on the order so there is no dispute when we get to x-ray. However, I had to purchase and bring my own shield, as they don't have any.

    thanks for replying - where did you purchase your shielding and how do you know you're getting the right kind? Are you talking about shielding for both breasts and uterine region? Thanks!

  7. #7
    Join Date
    Sep 2011
    Posts
    8

    Question Question for Gayle about shielding

    I really appreciate your feedback. The facility we are at is Leatherman Spine in Louisville Kentucky. It's one of the very well respected doctors there and the way the visit worked was we came upstairs and a nurse saw us, then we went to the Xray room which was right there around the corner, and then we finally saw the doctor. So, obviously I could take it up with the nurse first and maybe ask the doctor to come see us first, but I don't know if that would work, as they seem to have their way of doing things. And other thing is since this place is already the best in town, how would I go about finding somewhere else to get the Xray done? I mean they have the facilities to do them right there as part of the appointment with the spine expert. Forgive me if this is a stupid question. Thanks loads.

  8. #8
    Join Date
    Sep 2011
    Posts
    8
    Quote Originally Posted by Pooka1 View Post
    Hi. I'm sorry about your daughter's diagnosis. The good news is your daughter's curve is small. Most small curves never need treatment and a fair percentage resolve on their own, sometimes completely.

    You seem to have come up to speed because you are asking all the right questions, the same questions some surgeons are asking (for example, is bracing effective?). The bracing literature is not very clean and a large scale study (BrAIST) is being conducted now to try to get a clearer answer about bracing efficacy. And even that study won't answer whether all bracing only delays rather than avoids surgery for people who are going to progress. The reason why this is even an issue is that brace treatment (23 hours hard bracing) is so difficult mentally and physically and why there are ethical issues of using it when the evidence of efficacy isn't clear.

    Surgery is NOT indicated once the curve goes past 25*. It is indicated when it goes past 50* (or so) or when it is past 40* (or so) and moving like a freight train as was the case of my one daughter.

    Watch and wait for curves under 25*, bracing for curves up to the surgical range, and surgery are the only medically-recommended treatments. PT is also considered a rational conservative treatment in some cases as evidenced by legitimate researchers and surgeons studying it.

    Alternative treatments (chiro, vibrating chairs, modified handheld jigsaws, little massagers, Schroth, rain drop therapy, chanting, etc.) are those dreamed up by untrained lay people. There is no evidence for their efficacy or it would be medicine.

    Science is the only game in town, especially when the stakes are high as in AIS.

    Last, I second the suggestion to get Scoliscore if/when appropriate. Ask your orthopedic surgeon about it. If she has a score indicating her curve won't progress, she may escape bracing. There is some evidence the majority of kids who wore braces never needed them to avoid progression. So again it's an ethics issue.

    Good luck.

    Sharon, wow, thanks for all the info and the thoughtful replies to my questions. I truly appreciate it. The Scoliscore.... sounds like it is a screening tool that is fairly accurate in predicting curves? I will check that out. I see what you mean about the brace being an ethics issue. I'm aware of all these type issues due to having undergone an unnecessary cesarean 16 years ago...so I've done much research in the cesarean/VBAC arena... that's why I ask questions. Or at least I try to. Anyway. That is what I'm wondering, brace worth doing.... we'll see how she looks at the next appointment. Thanks.

  9. #9
    Join Date
    Sep 2011
    Posts
    8
    Quote Originally Posted by LindaRacine View Post
    Hi...

    It does sound like normal treatment. You'll find dozens of alternative treatments if you search the internet. Unfortunately, very few have any research at all, and none have any long-term followup. There are a lot of brace studies, especially in terms of the Boston brace. You can search PubMed (http://www.pubmed.com) and type in the search term scoliosis brace, and you'll find more studies than you can possibly imagine.

    I understand why they can't use a gonadal shield on your daughter, but if they're doing full spine X-rays, they should be shielding her breasts. Also, they're hopefully using a low dose radiation machine.

    The good news for you is that, assuming your daughter is close to menses, there's relatively little risk that her curve will progress. Hope she doesn't beat the odds! If she does beat the odds, and her curve gets to 25 degrees, I would definitely recommend the ScoliScore test.

    Regards,
    Linda

    Linda, who knows if she is close to menses? That is a good question. She's started to develop this year, but I think I went another year after development before menses started. so I don't know. Didn't know that those two variables are related. And thanks for mentioning the scoleScore test, I was unaware of that. Thanks.

  10. #10
    Join Date
    Jan 2008
    Location
    NC
    Posts
    9,317
    Quote Originally Posted by loboandbobo View Post
    The curvature is in her lumbar area, and the technician said shielding is not possible.
    I forgot to mention... lumbar curves don't tend to progress as much as other curves, notably thoracic curves. This difference is so much so that a large bracing study had the results basically disregarded because the lumbar curves were inadvertently stacked in the brace group and the thoracic curves were inadvertently stacked in the watch and wait group. It was later shown that thoracic curves are much more likely to progress than lumbar curves so the whole study was nonsense, unfortunately, because they didn't balance the curve types in the brace and control groups.

    So that's also in your favor besides having a very small curve. While nobody can say what a curve will do, you have a lot in your favor on this not going anywhere. I certainly hope that is the case. :-)
    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
    Join Date
    Oct 2008
    Posts
    299
    I bought a lead half-apron, maybe a child size, not sure, which works fine from a medical supply company. Did it online. It has a velcro strap that holds it in place. It needs to be positioned carefully below the hips so as not to block the curve and growth plates which may be harder for your girl because she has a lumbar curve, but is do-able. The techs should be able to handle it. We haven't started using breast shields yet. That will come up at her next x-ray in a year. She does have ALL her x-rays done in the PA position (posterior/anterior, ie, from behind) so her breast tissue is facing away from the machine. The technician sometimes wants to turn her around but I get that on the order as well. Our doctor writes our order for x-ray for the follow-up visit while we are there for our appointment, so it is easy to get it done, but I'm sure you can ask for some way to have a standing order entered for your daughter about your wishes. You may have to push quite a bit.
    mamandcrm

    G diagnosed 6/08 at almost 7 with 25*
    Providence night brace, increased to 35*
    Rigo-Cheneau brace full-time 12/08-4/10
    14* at 10/09 OOB x-ray
    11* at 4/10 OOB x-ray
    Wearing R-C part-time since 4/10
    latest OOB xray 5/14 13*
    currently going on 13 yrs old

    I no longer participate in this forum though I will update signature from time to time with status

  12. #12
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    7,213
    Leatherman is really well known, and widely respected for scoliosis surgery. I doubt you'd get 36" films too many other places in Louisville.

    I would definitely talk to the doctor, and confirm that the shield(s) cannot be used. In other words, I would not take the word of the x-ray technician. Bringing your own shields sounds like a bad idea for me. I'd be shocked to find out that the clinic x-ray department doesn't have their own shields.

    --Linda
    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

  13. #13
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,158

    call ahead prior to next appointment

    Hi lobo,

    I would start by placing a call to the nurse for your daughter's doctor. Tell him/her you are concerned that your daughter was not shielded, and that you will not allow any further x-rays without shielding. Ask if they can make sure your daughter has proper shielding ordered ahead of time, so there is no argument with the x-ray tech.

    Here's an example of what happened to us when my daughter was 6. She had a PA (back to front) x-ray done, and I was very nervous so not paying full attention to the tech's procedure. I did notice she put the shield on my daughter's tummy, not on her back where it should be, but she did it all very quickly and then we went in to see the doc. After we got home I called the office, explained my concern to the nurse, and they eventually put me through to the x-ray tech. This gal very callously explained to me that my daughter had millions of cells die every day, so it didn't matter if a few more died from her x-ray. This is an exact quote. I was quite shocked to say the least, and told her that was the wrong thing to say to a child's mother! I called back to the nurse, and insisted she ask the doctor about proper shielding. The nurse called back and said he had no opinion or knowledge of proper shielding, and left it up to the x-ray tech. The next time we went back, I told the tech I wanted my daughter shielded properly, from the primary beam, which is considered the most damaging. She told me she shields from the scatter radiation (which is completely incorrect). I had to be extremely firm, and told her that since we disagreed, to please my daughter shielded from both sides, which she did but I could tell was disgusted about--but who cares! I told her "I am the Mom you are going to hate." After a few more visits to this office I switched my daughter's care to Shriners.

    BTW, I am a nurse in invasive cardiology where we work with radiation every day, so I am very familiar with the topic of radiation safety.

    Good luck,
    Gayle, age 50
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

    also mom of Torrey, 12 y/o son, 16* T, stable

  14. #14
    Join Date
    Oct 2008
    Posts
    299
    Just FYI, there are no appropriate shields available at the National Children's Medical Center department where we go. If there aren't any there, it is probably not that uncommon. Our doctor had no problem with the shield we purchased.
    mamandcrm

    G diagnosed 6/08 at almost 7 with 25*
    Providence night brace, increased to 35*
    Rigo-Cheneau brace full-time 12/08-4/10
    14* at 10/09 OOB x-ray
    11* at 4/10 OOB x-ray
    Wearing R-C part-time since 4/10
    latest OOB xray 5/14 13*
    currently going on 13 yrs old

    I no longer participate in this forum though I will update signature from time to time with status

  15. #15
    Join Date
    Sep 2011
    Posts
    8
    Quote Originally Posted by Pooka1 View Post
    I forgot to mention... lumbar curves don't tend to progress as much as other curves, notably thoracic curves. This difference is so much so that a large bracing study had the results basically disregarded because the lumbar curves were inadvertently stacked in the brace group and the thoracic curves were inadvertently stacked in the watch and wait group. It was later shown that thoracic curves are much more likely to progress than lumbar curves so the whole study was nonsense, unfortunately, because they didn't balance the curve types in the brace and control groups.

    So that's also in your favor besides having a very small curve. While nobody can say what a curve will do, you have a lot in your favor on this not going anywhere. I certainly hope that is the case. :-)


    Sharon, thank you for this information and your kind thoughts!

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •