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Thread: seen ORthopedic today :)

  1. #1
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    seen ORthopedic today :)

    The Orthopedic was very nice and informative.....we learned so much today...finally have some answers....

    They took more radiographs, from the pictures her lower lumbar curve improved from 28.5 degrees to 25 degrees. The Ortho stated that her left leg is same length as right...good news. She is borderline for a brace....he rec waiting 3 months since she improved.

    Then get a brace. I feel relieved to have some answers. She is still growing so change can happen.

    I feel good that we have been doing those core exercises, it may have helped correct the hips alignment....anyway pictures look better.

    ITs not a perfect angle...and so we will continue to do core exercises with balance. I also use an invert back board to help lengthen the back.

    I still want to look into PT for her, leaning toward Schroth therapy.
    age 15
    Daughter diagnosed at age 13
    T20 l23 10-09
    T27 L27 1/2010

    T10 L 20 in brace 4/2010
    T22 L25 12/2010 out of brace
    T24 L25 7/2011 out of brace

    Type 1 diabetes- pumping
    Wearing a Boston brace and Schroth therapy
    Faith, Hope, and Love- the greatest of these is Love


  2. #2
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    Hi Bigbluefrog,

    I'd love to know how you came up with your handle. Very cute.

    I'm sorry to hear that your daughter has been diagnosed with scoliosis along with diabetes. My daughter has been trying to deal with serious acne along with scoliosis....really annoying to have two disfiguring conditions to deal with, especially when she loves ballet and needs to look lovely for it. It really is hard to deal with two serious medical conditions at the same time.

    I just saw your posts and just wanted to suggest that since your daughter is thirteen she could very easily be in a large growth spurt and her curves could be increasing very quickly. It is very odd in my book for these doctors to wait to document progression and have these curves increase than to just do a left hand x-ray and determine if your daughter has significant growth left (did he or she do that x-ray)?. If your daughter is pre-menarchal she would probably have lots of growth left with which the curve can become much worse. I believe that if you are diagnosed with a 25 degree curve you are supposed to be prescribed a brace, not just wait to see if there's progression. There are too many kids on these boards whose curves get much larger because they are told to wait and watch. It is sad to see.

    Your daughter is still in the range to be braced with a providence brace and if you wait, she might be out of the range for that. My daughter has been in a Charleston Bending Brace and has been very successful with it, she only wears it at night. And it really hasn't been that much of a problem after she got used to it the first few nights. She even takes it on sleepovers. Perhaps you could get a second opinion with a different doctor, or ask this doctor whether a nighttime brace would be okay for her, or whether he could do a hand x-ray to determine physical maturity. As I tell everyone with a scoliosis diagnosis, time is of the essence.

  3. #3
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    Quote Originally Posted by Ballet Mom View Post
    Hi Bigbluefrog,

    if your daughter has significant growth left (did he or she do that x-ray)?. If your daughter is pre-menarchal she would probably have lots of growth left with which the curve can become much worse. I believe that if you are diagnosed with a 25 degree curve you are supposed to be prescribed a brace, not just wait to see if there's progression. There are too many kids on these boards whose curves get much larger because they are told to wait and watch. It is sad to see.

    As I tell everyone with a scoliosis diagnosis, time is of the essence.
    He did do a special xray measurement for growth, basicly she will grow more she hasn't started her menses yet.

    I know that it can change suddenly, he stated it could only change a degree a month at most...is that true? followup in Jan.

    Something worked...for now, crossing my fingers and praying we made the right decision. Lots of tears and prayers over here.
    Last edited by Bigbluefrog; 03-10-2010 at 08:59 PM.
    age 15
    Daughter diagnosed at age 13
    T20 l23 10-09
    T27 L27 1/2010

    T10 L 20 in brace 4/2010
    T22 L25 12/2010 out of brace
    T24 L25 7/2011 out of brace

    Type 1 diabetes- pumping
    Wearing a Boston brace and Schroth therapy
    Faith, Hope, and Love- the greatest of these is Love


  4. #4
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    Quote Originally Posted by Bigbluefrog View Post
    I know that it can change suddenly, he stated it could only change a degree a month at most...is that true? followup in Jan.
    No.

    My one daughter's curve moved on average 5* a month for at least five months. It was never documented to stop until her surgery of course.

    My other daughter has a start and stop curve, both in and out of brace. In other words, the curve was stable in and out of brace and moved in and out of brace. Clearly the brace wasn't working despite the excellent correction in brace.

    Ask you surgeon about the evidence case for bracing. Given the issue with the pump, if she were my daughter I wouldn't consider a brace at all. But please ask you surgeon about the evidence in hand for bracing rather than read the various opinions from lay folks on this site.

    Also you might consider vertebral body stapling in lieu of bracing.

    Good luck.
    Last edited by Pooka1; 10-15-2009 at 07:24 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. #5
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    I'm very happy to hear that your doctor actually performed an x-ray to determine if your daughter still has growth to occur. It sounds like your daughter is under the care of a good ortho. Did the doctor explain how to manage the diabetes with a scoliosis brace, or does it come down to not being able to use the insulin pump? You are facing some tough choices. I feel for you.

    Yes, scoliosis curves can progress much faster than one degree a month during the adolescent growth spurt. I have heard of many cases increasing extremely quickly, including my own daughter, and several others on this site and other sites. I think that typically curves are slower in order to explain the orthopedists saying that one degree a month is a maximum, but they certainly can and do move fast in some kids. And you have to be aware that your daughter is now at the point where the disfigurement can become much more noticeable with additional growth.

    It is my belief that exercise will not hold a curve in the adolescent growth spurt without a brace. (Until evidence on torso rotation exercises is actually available and valid). I believe that Schroth also uses braces during the growth spurt. My daughter was in ballet 6-7 days a week and it certainly did not hold the curve and many other ballet students are diagnosed with scoliosis also, and ballet definitely works the spine muscles. And this is two hours every day.

    Also, please realize that the process to make the brace can be a long process also, so once you make the decision to brace, if you do...add in quite a bit of time before your daughter actually receives the brace.

    Anyhow, just things to think about. Good luck to you and your daughter, and remember that she will cue off your response to bracing. If you are against the bracing, she will most likely not accept wearing the brace for long or enough to allow it to work.

    Sending hugs to you and your daughter!

  6. #6
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    BalletMom, we dont know that he did a hand xray. SHe said he "did a special xray for growth". That might imply just assessing her Risser sign.
    Bigbluefrog, Here are my two cents:
    I think everyone will agree that the doctors assessment of a maximum curve increase of 1 degree/month is not correct.
    Attached is a figure from Sanders 2007 showing individual curve changes for a cohort of girls. Some are fairly stable and others show very rapid progression. The thrust of the paper was trying to determine just WHEN does the rate of increase for curves start (and what are reliable indicators for timing this (menses, age, Risser sign, skeletal maturity from hand xrays, etc). This figure is illustrative of the huge variability in curve progression however it pretty clearly shows your doctors statement as being somewhat, shall I say, misleading.
    Both BalletMom and Pooka make valid points.
    BalletMom notes that your daughter is at an age when curves are likely to progress rapidly (if she happens to fall in the category of having an advancing curve – she may not). IF your daughter falls into the category of having an advancing curve, in a very short time her curve could progress such that you loose the option of night bracing (or VBS). These two techniques seem to work best on smaller curves.
    Pooka notes that the evidence for bracing efficacy is weak and our understanding of the natural history of scoliosis is incomplete. She is pretty much saying that you may subject her to bracing unnecessarily or, even if you do brace, she may progress to require surgery anyway.
    That leaves you in a conundrum. You have two smart people, both experienced with dealing with children with scoliosis and aware of the strengths and weaknesses of the literature giving you somewhat opposing advice. It is going to come down to a personal decision, and, although you might second guess yourself in the future, you can not know now if there is a “right” decision. Do some soul searching but don’t beat yourself up over whatever you decide.
    Now, if I were you, this is what I would do (and it leans towards BalletMom’s advice).
    I would consider getting a second opinion. Does the doctor you saw specialize in scoliosis? Is he a member of the Scoliosis Research Society (SRS) – while not a litmus test for a good doctor, it does give you some indication of his experience in treating scoliosis.
    I would educate myself about scoliosis. You have obviously started to do this. Try to understand both sides of the debates about bracing and exercise therapy.
    Try to get that new genetic test from Axial Biotech. It might provide an additional data point to help you make a decision.
    IF you are inclined to brace your daughter, give some serious thought to a night brace. It seems like a reasonable compromise (Note that both BalletMom and Pooka choose that route after weighing their options).
    If you are considering a night brace, try to determine if that is an option your doctor (either the existing one or the second opinion one) offers. If you are considering VBS, try to get an appointment with one of the doctors who specialize in that.
    There is no right or wrong answer. This whole thing is a crap shoot. You can go to different doctors, each equally informed, and get different advice.
    And remember, no one on these forums are qualified to give medical advice. We are just offering our opinions and these should be taken with a grain of salt.
    Good luck and keep us informed.

  7. #7
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    There is no right or wrong answer. This whole thing is a crap shoot. You can go to different doctors, each equally informed, and get different advice.
    Doesn't that just sum it all up right there! Thanks CD, good post.


    Actually, on thinking about it, that's not quite true. I think you can increase your odds of success quite a bit by bracing with a good brace, but of course, nothing is guaranteed.
    Last edited by Ballet Mom; 10-15-2009 at 11:13 AM.

  8. #8
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    “Never heard of the SpineCor”? That suggests to me that this person is not current with the medical literature. I mean, come on. You can’t help but “hear” about the SpineCor if scoliosis is your speciality. You might not believe in it, but you would have at least heard about it.

    If you’re going to try conservative treatments (bracing or exercise) you should find someone who is on top of their game. A good “surgeon” does not necessarily equate to a good “bracer”. Yes, you want an orthopaedic doctor/surgeon, but be SURE he specializes in scoliosis not knee replacements.

    When you say your daughter is Risser 1, is that what you were referring to when you said the doctor did a special xray to assess her skeletal maturity? What BalletMom was referring to was an xray of the hand. Recent credible medical research has shown that to be a superior indication of skeletal maturity. HOWEVER, the fact that she is pre-menarchal affirms the suggestion that she still has significant growth remaining.

    I would go to SRS.org and see if the doctor you saw was listed as a member. I would also see what other doctors in your area are members.

    I am sorry to plant doubts in your mind about your doctor. I do not intend to offend. But, I’ll through this one other thought out there for what it is worth.

    Exactly who read your daughters xray? Was it from a single film of her spine or was it across 2 films? The reason I ask is that the original doctor (radiologist) who read my daughters xrays did NOT use the standard full spine xray but rather taped together two (upper and lower) spine xrays and read her curve to be significantly LESS than what it actually was. Your daughter has a double curve. They are more challenging to measure. Maybe, just maybe, you are in a similar situation (hopefully opposite) and your daughters curve was read incorrectly. At your daughters age, big difference between 25 degrees and 20 degrees. Big difference.

  9. #9
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    Quote Originally Posted by Bigbluefrog View Post
    The Pediatrician never heard of Spinecor, but she was very supportive of Schroth and has seen good results. I scheduled an evaluation there. And trying to get insurance coverage.
    Note to Concerned Dad who misread this... the PEDIATRICIAN never heard of Spinecor. There was no statement about an orthopedic surgeon not hearing about it which would have been unbelievable frankly.

    Interesting that you state a 5* change in a month....ouch. We will have to definitely get a second opinion. Who would you see? besides an Orthopedic surgeons.
    I find it jaw-dropping that a pediatric orthopedic surgeon told you that a curve couldn't move more than one degree a month. I am guessing this guy doesn't work on spines AT ALL. This is not the most uncommon finding out there. Is it possible you misunderstood him? Maybe he said if your daughter stayed under 50* at maturity that her curve would only be expected to move a degree a year on average? I've heard that one.

    Correct me if I am wrong, it appears some will get better some progress no matter what and others stay stable...is it a YSMV kinda deal?
    YSMV= your scoliosis may vary....everyone is unique and you could do everything right and still need surgery.
    You got it in one. Absolutely nailed it. Good work.

    I wanted to bring up the issue of the BRAIST Study wherein there is an honest admission up front that the bracing literature (i.e., evidence) does NOT support the use of bracing as the standard of care. This is a very curious situation indeed. Because of this lack of evidence, they are recruiting now for a large controlled trial... kids are randomly assigned to either brace or observation. This is the first study that has some hope of finally answering the question of whether or not bracing is effective.

    http://braiststudy.com/

    About 20 institutions have signed up to participate. That is more than a few surgeons who are doubtful enough about bracing such that they think having an observation group is ethical.

    Food for thought.
    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. #10
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    Quote Originally Posted by concerned dad View Post
    IF you are inclined to brace your daughter, give some serious thought to a night brace. It seems like a reasonable compromise (Note that both BalletMom and Pooka choose that route after weighing their options).
    It is not accurate to say I "chose" a brace. The surgeon suggested it and I went along, not knowing at the time the miasma of uncontrolled studies that constitutes bracing "research" to date.

    When you look at the relatively few papers that deal with the abysmally low efficacy of bracing with connective tissue disorders, it is okay to tell you daughter she can stop wearing it. At the time my daughter was prescribed the brace, she didn't have the hypermobility diagnosis. That, in conjunction with the small literature would have caused me to push back a bit and question the bracing more.

    At the time, my daughter wanted to try the Charleston though. Given that, I would have gotten it for her even if I was 1,000 percent convinced it would be a waste of time. She gets to try whatever she wants in my book (except overtly quacky stuff which I will not pay for).
    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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    Talking

    Quote Originally Posted by Pooka1 View Post

    I wanted to bring up the issue of the BRAIST Study wherein there is an honest admission up front that the bracing literature (i.e., evidence) does NOT support the use of bracing as the standard of care.

    I'm not so sure that is an accurate portrayal. Most bracing studies DO support bracing as the standard of care. Braist study researchers pretty much stated that not everyone agreed on bracing, and voila, equipoise, and voila our study is ethical, even though most of the doctor's opinions showed that the doctors do agree that bracing helps, they just disagree on how much, if I recall correctly.

    My daughter's curve didn't just magically stop on its own.

    Bigbluefrog,

    If you get a second opinion, you definitely need to have her seen by an orthopedic surgeon, preferably in the Scoliosis Research Society, as her curve is at a critical point and with her only at Risser 1, she can progress substantially very quickly. She shouldn't be being seen by anyone other than an orthopedic surgeon.

    It's just my opinion, but I would stay away from the Spinecore since your daughter is in her adolescent growth spurt. We have not seen anyone successfully get through this tremendous and forceful growth spurt using the Spinecor on this forum. We are still looking though and hoping that someone might possibly do so, however, I wouldn't want my daughter being the umpteenth to fail this critical growth stage.

    At least your doctor must think your daughter can use a Boston brace with the pump. I'm quite sure your daughter is not the only one that's been in that situation. They can hopefully make cutouts in the brace to help her with her pump. Your orthotist and doctor will be the best to advise you on those issues. Hopefully your daughter could try out the Providence brace. It is useful on smaller double curves, however, it's not available in all parts of the country. You can always ask your current surgeon who sounds highly recommended if a nighttime brace is an option for her. She just needs to have a flexible spine and curves under 35 degrees, I believe.

    Concerned Dad,

    We did not choose my daughter's brace either. That is what the surgeon recomended for her. He told me that is what he'd put his daughter in if she had scoliosis. I think that's actually a proper method, at some point, a patient needs to rely on the doctor's expertise. I think most surgeons tend to want to use a TLSO brace as a first choice and then those children or parents that balk at the brace might be given a nighttime brace. I think that may vary in warm climates where the surgeons tend to prescribe nighttime braces because due to experience, when the kids get too hot, they won't wear their braces and therefore the bracing fails.

  12. #12
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    Okay, I have no idea where that super smiley face came from at the top of my last post and I can find no way to delete it!

  13. #13
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    Quote Originally Posted by Pooka1 View Post
    When you look at the relatively few papers that deal with the abysmally low efficacy of bracing with connective tissue disorders, it is okay to tell you daughter she can stop wearing it. At the time my daughter was prescribed the brace, she didn't have the hypermobility diagnosis. That, in conjunction with the small literature would have caused me to push back a bit and question the bracing more.
    I don't believe being hypermobile is considered a connective tissue disorder in terms of bracing either working or not working because of it. It's really not considered a disorder at all unless someone's joints start hurting or dislocating from it.

  14. #14
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    Quote Originally Posted by Ballet Mom View Post
    My daughter's curve didn't just magically stop on its own.
    Actually, you have no good evidence it didn't stop on its own. The only change in measurement occurred between two different offices (the first one not an orthopedic surgeon IIRC) and we know the inter-operator variability has been documented at +/- 10*.

    That plus if the difference in measurements is real, it is unprecedented (over 16* in less than a month). That may in fact be impossible, pointing back to the variability between offices.

    Since you don't have any measurement done in the same office that shows any change, the most conservative conclusion that is also consistent with know maximal rates of curve movement is that the curve stopped BEFORE you started bracing.

    I think if you are going to make these statements to new mothers trying to figure this out, you should just post the measurements, dates, and offices where they were done and let others make their conclusions.

    It is very misleading to state your conclusion that the brace worked when you really have no good evidence for that statement.

    Bigbluefrog, please look at Balletmom's data and make your own conclusions. Always do that with everyone's posts, mine included (except Ti Ed who is wise beyond his years).
    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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    Pooka,

    I think it's shameful that you are trying to convince every new parent on these forums to go directly to surgery. Shame on you.

    My daughter was twelve, premenarchal by almost a year, and Risser zero when she was diagnosed and was progressing in front of my eyes. I was able to watch her spine doing battle with her brace during the bracing period. She has grown three to four inches since she got her brace and her curve has not progressed at all. I think it's ridiculous for you to be drawing any kind of conclusion other than the brace stopped the curve in its tracks.

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