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Thread: Waiting and Watching - Parents Beware

  1. #1
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    Waiting and Watching - Parents Beware

    I found this post on someone's blog. I am removing the name and the name of the doctor because I feel a little funny posting identifying information when they may not want it prominently displayed. But to watch and wait at 25 degrees in the middle of a growth spurt? Not even the chance to wear a nighttime brace? And then no brace again when the curve reaches 32 degrees?

    This wait and watch business really infuriates me. Dingo keep doing what you're doing...it's a heck of a lot better than what some of these surgeons are doing. Unbelievable... some of them don't even give the poor kids a chance. I would definitely head to a different surgeon's office if they didn't give my kid a chance to brace.


    My daughter _____ is a beautiful young woman with the most amazing personality! Last year when she was at the doctor getting her eye looked at the doctor asked if she had ever been checked for scoliosis, of course we were shocked and said "no" why?

    The doctor thought it might be a good idea to get it checked. So we did, we went to Dr. ______at the _____ in November and her back had a slight curve in it.

    He said he wanted to watch it and to come back in March, of course I was thinking, no way... this is crazy she is just growing really tall all of the sudden and this was happening because she grew 4 inches in just a few months.

    Well we went back and her back had curved another 7 degrees, it went from 25 to 32..I was sick inside, I am thinking wow...this is crazy! And I have absolutely no control over this thing that is happening to my daughters back and I am supposed to protect her from everything!

    I will never forget when the nurse said "Wow" the next apt we are going to have you see Dr. ____!

    Well this was last Friday! My head is spinning...what! He is recommending surgery and is amazed by the size of her "hump" ..her surgery is July 20, 2009. They are going to put"hardware" in her back and rods to straighten it out!

  2. #2
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    This thread is what I was referring to in the other thread about the huge problem of scientific illiteracy in the general public.

    Textbook.
    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."

  3. #3
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    How so? Please explain.

  4. #4
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    Opinion from MD, PT, other?

    I agree with your comment about frustration over "waiting and watching." You say: "I would definitely head to a different surgeon's office if they didn't give my kid a chance to brace." I think erring on the side of getting a second opinion (or even more) is wise. In addition to seeking opinions from surgeons, parents may want to also ensure they inquire with their pediatrician or family doctor or other clinical experts such as physical therapists. Consider this from a recent Chicago Tribune article:

    Does [physical therapy] help strengthen the spinal musculature and improve breathing capacity? It's possible," said Dr. Purnendu Gupta, an orthopedic surgeon at the University of Chicago.

    Physical therapist Cindy Marti, one of three Schroth-certified therapists at Spinal Dynamics of Wisconsin in Milwaukee isn't surprised. "Scoliosis is traditionally managed from a surgical perspective; surgeons don't typically embrace physical therapy," said Marti, the clinic owner. "But it can and should be explored as an option."

    Read full article here:
    http://www.chicagotribune.com/featur...3305658.column

    Upon request, Marti's office will provide abstracts from about adolescent idiopathic scoliosis and conservative treatment. The clinic's Schroth-certified therapists will also discuss clinical questions with physicians and other
    healthcare providers as well as prospective patients. Call
    414-302-0770 or send email to info@sdwpt.com

  5. #5
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    Ballet Mom, I'm not sure exactly what Pooka means by "scientific illiteracy" but I can hazard a guess. I haven't heard of surgery being recommended for a curve of 32 degrees. If that's the case, the doctor who recommended the surgery is probably the source of "scientific illiteracy" that Pooka is referring to (but I'm sure she'll clarify when she is on next). So this raises 2 thoughts in my mind...either #1) When the daughter was taken back for the third appointment in July, her curve had progressed even further than the 32 degrees to surgical levels but the mother didn't specify what the curve was because she's so busy thinking about the surgery(generally 50 degrees although I hear some start thinking of it in the 40's - especially if there are other factors such as pain and maybe even the large rotation being referred to in this girl's case). If not that, then #2) Wow, this mom really needs a second or even third opinion before considering surgery on a 32 degree curve -i would not be confident with that doctor.

    In any case, I'm sorry to hear of the progression of this girl's curve. It really is a shame that bracing wasn't even discussed at the 2nd appointment when the curve hit 32 degrees...
    Last edited by jillw; 07-13-2009 at 04:07 PM.
    daughter, 12, diagnosed 8/07 with 19T/13L
    -Braced in spinecor 10/07 - 8/12 with excellent in brace correction and stable/slightly decreased out of brace curves.
    -Introduced Providence brace as adjunct at night in 11/2011 in anticipation of growth spurt. Curves still stable.
    -Currently in Boston Brace. Growth spurt is here and curves (and rotation) have increased to 23T/17L

  6. #6
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    The scoliosis has increased 4 degrees since the last visit in March, 3 months ago. ________ has open growth plates meaning that she has quite a bit of growing left to do. For this reason, It is likely the curve will continue to increase during ________'s growth spurt.
    Apparently there was another appointment in June with an increase in curve. Amazing what happens when curves are just watched during the growth spurt. Why, it's almost predictable!

    I actually think they should be bracing between twenty and twenty five degrees when diagnosed if the child hasn't finished their adolescent growth spurt yet. Why would you wait another several months after you hit 25 degrees unless there was no intention of ever bracing? It just makes it harder for bracing to work on a larger curve.

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    Curve reduction in one case with schroth and bracing


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    Quote Originally Posted by Ballet Mom View Post
    I actually think they should be bracing between twenty and twenty five degrees when diagnosed if the child hasn't finished their adolescent growth spurt yet. Why would you wait another several months after you hit 25 degrees unless there was no intention of ever bracing? It just makes it harder for bracing to work on a larger curve.
    Don’t forget what Danielson said in his paper which followed up on the large 1995 SRS bracing study:

    As 70% of the observed patients during the original study period did not require any other treatment, 70% of the initially braced patients can therefore be regarded as having been treated unnecessarily. One major question is as follows: is it worth overtreating such a high percentage of patients to realize the goal of “saving” only 10% of the patients from surgery, the percentage in the group of observed patients?

    So, you start bracing kids at 20 degrees and how many kids are going to be needlessly braced. As a parent, we want to “do something”. But, would you do it if YOU had to wear the brace? How sad would it be to wear a brace and STILL need surgery. How sad would it be to wear the brace during your youth and find out later it DIDNT do a darn thing.

    The decision to brace or not should not be taken lightly. Personally, I would rather live with the guilt than have my daughter live her childhood wearing a brace needlessly. I respect others who have opposing views but I believe it is something we should all, at least, ponder before advocating bracing.

    I think a night brace or perhaps the SpineCor (or even Schroth or Clear maybe) is a better compromise given the poor level of our understanding about the positive affects of bracing. Our grandchildren may benefit from the current bracing study. Hope they do it right this time.

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    It would be interesting to know if the doctor was a scoliosis specialist.

  10. #10
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    It would be interesting to know if the doctor was a scoliosis specialist.
    I just checked and the surgeon is a member of the Scoliosis Research Society. Does that make him a scoliosis specialist?

  11. #11
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    The decision to brace or not should not be taken lightly.
    CD, it doesn't sound to me like she was given the choice to brace or not to brace. How unfortunate to not even let the parent and child help make that decision. That major decision was taken away from them. I am of the opinion that a doctor should be able to explain the ramifications of either decision to the patient. I am simply trying to help parents make an informed decision and offering an alternative to them should they happen to enter into a surgeon's office who does not offer bracing to their child.

    Even the Braist study site states the following:
    Bracing is currently the standard of care for preventing curve progression and treating AIS.
    http://clinicaltrials.gov/ct2/show/NCT00448448

    She obviously did not receive the standard of care after presenting with a 25 degree curve.

    is it worth overtreating such a high percentage of patients to realize the goal of “saving” only 10% of the patients from surgery, the percentage in the group of observed patients?
    I would respond with an emphatic yes! I thank God for my daughter's wonderful results. Nobody is forcing anybody else to brace, they can make their own decision. I'm glad nobody took our choice away from us. That response is a financial response for beancounters, not a medical one. I guess they shouldn't operate on most brain cancers or advanced cancers of any kind as they're just basically prolonging their life for a little while.

    Do you still have a link or a title for the Danielson paper? I guess I would like to read it. Thanks.

    Our grandchildren may benefit from the current bracing study. Hope they do it right this time.
    I don't see how it is going to be very beneficial at all. They're using one type of brace and doesn't sound like they're going to account for factors like the patient being overweight, or having a flexible spine. Things that DO matter in bracing. And I'll be amazed if they get enough people in the study to make it actually mean anything.

  12. #12
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    The decision to brace or not should not be taken lightly
    .

    CD, it doesn't sound to me like she was given the choice to brace or not to brace. How unfortunate to not even let the parent and child help make that decision. That major decision was taken away from them. I am of the opinion that a doctor should be able to explain the ramifications of either decision to the patient.
    I agree with you 100%.



    is it worth overtreating such a high percentage of patients to realize the goal of “saving” only 10% of the patients from surgery, the percentage in the group of observed patients?
    I would respond with an emphatic yes! I thank God for my daughter's wonderful results. Nobody is forcing anybody else to brace, they can make their own decision. I'm glad nobody took our choice away from us. That response is a financial response for beancounters, not a medical one. I guess they shouldn't operate on most brain cancers or advanced cancers of any kind as they're just basically prolonging their life for a little while.
    I don’t think I agree with you on this point. I suspect many of the formerly braced folks here who nevertheless went on to have surgery would also disagree. I think the issue goes to just how onerous the treatment is. It is certainly “worthwhile” giving 100 patients high blood pressure meds to save 10 from a stroke. But a brace is not the same as a daily pill. IIRC, your child is in a night brace, isn’t she. I wonder if your view would change if she were wearing a 23 hr Boston brace for 5 years.

    I don’t think the “beancounters” care about the degree of difficulty of the treatment. If they can spend $30k ($3k times 10 patients) to save $150k for one surgery then they should be “all for” bracing and I suspect they are. But, for those 9 kids who where braced and wouldn’t have progressed to surgery anyway: what’s the value you could put on a childhood unfettered by a back brace.

    I do agree totally that the choice should not be taken away from the parent and child. An informed decision should be made. Key data is missing to make that decision and the BRAIST trial, even with the limitations you correctly note, will help folks in the future make those decisions.

    Do you still have a link or a title for the Danielson paper? I guess I would like to read it. Thanks.
    You can email me at concerned.dad.2 AT gmail.com and I’ll set you up.
    The reference is:
    A Prospective Study of Brace Treatment Versus Observation Alone in Adolescent Idiopathic Scoliosis
    A Follow-up Mean of 16 Years After Maturity
    Aina J. Danielsson, MD, PhD,* Ralph Hasserius, MD, PhD,† Acke Ohlin, MD, PhD,†and Alf L. Nachemson, MD, PhD*
    SPINE Volume 32, Number 20, pp 2198–2207

  13. #13
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    Quote Originally Posted by Ballet Mom View Post
    I just checked and the surgeon is a member of the Scoliosis Research Society. Does that make him a scoliosis specialist?
    I'm surprised to find that there's a scoliosis specialist who apparently feels so strongly that bracing doesn't work that he wouldn't give the parents a choice.

  14. #14
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    It is good that Ballet Mom didnt include the doctors name. It is not unlikely that the mom she quoted missed some detail that is relevant.

    The doctor apparently waited for evidence that the curve was progressing. The fact that the girl had already gone through a significant growth spurt (4 inches in a few months) suggests the possibility that he felt she was close to the end of her growth. I believe it is standard protocol to demonstrate a progressing curve in a post menarchal girl before bracing (for curves below 25).

    What is baffling is why surgery at 32 degrees. Maybe the original poster left out mention of significant pain or rotation/deformity. Or Maybe the doctors boat payment was due. In any event, another good reason not to post second hand dialogues which include physicians names. What with patient confidentiality and all, the guy couldnt defend himself if he wanted to.

  15. #15
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    Quote Originally Posted by concerned dad View Post
    It is good that Ballet Mom didnt include the doctors name. It is not unlikely that the mom she quoted missed some detail that is relevant.

    The doctor apparently waited for evidence that the curve was progressing. The fact that the girl had already gone through a significant growth spurt (4 inches in a few months) suggests the possibility that he felt she was close to the end of her growth. I believe it is standard protocol to demonstrate a progressing curve in a post menarchal girl before bracing (for curves below 25).

    What is baffling is why surgery at 32 degrees. Maybe the original poster left out mention of significant pain or rotation/deformity. Or Maybe the doctors boat payment was due. In any event, another good reason not to post second hand dialogues which include physicians names. What with patient confidentiality and all, the guy couldnt defend himself if he wanted to.
    Very good points.

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