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Thread: Who Decides?

  1. #31
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    Emarismom-

    Thank you for your post. I am taking all of my daughter's MRI's to a neurologist, in a few weeks. If he does not feel the syrinx is an issue, then I will go to another. She does not have Chiari or tethered cord. I believe her syrinx was there when she was 7, at dx, because her MRI back then was questionable. The questionable part however, was dismissed to movement during the MRI. Yet, looking now at all 3 MRI's from over the years, it seems evident that the syrinx was there all along, which is why I am not convinced it isn't contributing to her scoliosis. The last neurologist suggested that her braced caused it-which while anything is possible, I find this statement ridiculous.

    Like you, I have seen, and continue to see differing opinions. I weigh them all, but then make the final decisions, with my daughter's opinion part of this now that she is 14. I stopped going to the orthos however, because when we visit them, they find ways to belittle our choices, and have even told us that what we are doing is wrong. I cannot have my daughter hear this every time-it breaks her down, and makes her current efforts feel like they are for nothing. We have even had to switch pediatricians twice, because every time we went in for a cough/fever/whatever they would go on about my daughter's back. No kid need to hear this over and over again. We now see a scoliosis specialist who deals with hundreds, maybe even thousands of children with scoliosis every year-from all over the world. We trust him immensely and are are in good hands.

    Good luck to you and your daughter

    Brooke

  2. #32
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    Hi Brooke,

    I was just curious, at this point what is it that the orthos here in the US that you have seen think you are doing wrong? Is it that your daughter is still at what they consider a surgical level and you are continuing to brace and do PT? Or is it that you are going outside the country and she is not being followed here? I can't see why any ortho would have a problem with her doing Schroth when she also is a Rigo-Cheneau brace full-time, unless it's still that they think she belongs in surgery.
    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

  3. #33
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    At this point, they think she belongs in surgery. Her curve now is above the standard range. I don't blame them for their opinions (at least in regards to surgery), I blame them for not respecting ours. And, I resent that they are the gold standard for treatment, when they offer few choices. This is a disservice to many kids, and adults.

    My dd was too young for fusion at 7, although her curve at that time was just barely within the surgical range. However, their lack of respect for our opinion was the same then. They suggested bracing her with a Boston brace for somewhere around 10 years, or growing rods-all while telling us the prognosis for both was not good, and that she would most likely have fusion in the end anyway. Since their options were clearly not good, in my opinion and in theirs, they should have had no reason to tell us at any time that our choices for treatment were "wrong."

    We were not bracing with Cheneau or doing Schroth back then. We were doing everything else under the sun-things that they may have thought were ridiculous, but for us were at least something. I am not sure how they would have reacted to Cheneau/Schroth, but, I know parents who are not even telling their ortho that they are going about this treatment. Hence, the divide between doctor and patient, that serve neither well. Which at the end of the day, is my real issue:

    Surgeon offers advice, patient is not in accordance with this advice and looks elsewhere, patient's opinion is disrespected by ortho, patient either continues "battling" with ortho, hides alternative treatment from ortho, or discontinues seeing ortho. Loss to all. I know this does not happen with everyone, but I know MANY whom it has, including us. I am not just speaking from my own experience, MANY parents have relayed this similar scenario to me. And, all are dismayed by it, because they do not necessarily know where to turn.

    Luckily, I now I have a specialist who is not against surgery, but is not pro-surgery. A middle ground, who respects our decisions. And, someone who can monitor my dd's scoliosis. I do believe continuity is important, and bouncing all over town trying to find a specialist who can both monitor scoliosis, while respecting a patient's choices-even if they are not in accordance with that specialist, is key to me. Although, ultimately, I believe treatment should take an integrated approach, that includes orthos/specialist, neurologist, brace maker, PT , pediatrician, internist, geneticist, whomever. Scoliosis affects many systems of the body, so I hope that scoliosis treatment heads in this direction.

  4. #34
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    Mariaf-

    I wish I had known about VBS when my daughter was 7, when she was a perfect candidate. But I had never heard of it until years later when her curve progressed past their criteria. In retrospect, I probably would have taken this route. It seems like a promising middle ground.

    I really hope it works for you son.

    Brooke

  5. #35
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    Do you go to Dr. Rigo's clinic in Barcelona? Feel free to PM me if that's better...
    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. #36
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    There is obviously an unmet need here in the United States regarding scoliosis treatment. Chiros are stepping in to fill that gap, unfortunately, they are not medical doctors, even though they love to pop out the "doc" title every instance they can in order to win people's trust who may not know better. I don't wish to fly to Europe for treatment, and most people can't afford it, but I will never be or have any of my family under the "treatment" of a chiro, the misinformation that comes out of them never ceases to amaze me.

    Therefore, I think the solution is that some doctors who are not orthopedic surgeons need to specialize their practice around conservative scoliosis treatment here in the United States, located within the general regions of the country. Any medical doctor could do it, perhaps family medicine, seeing as they are all trying to abandon their profession due to the hugely long hours and relatively low pay. The insurance companies should like it because they won't be needing to pay orthopedic surgeons at their phenomenally high rate of pay for reading an x-ray every four to six months. The surgeons can be left to do what they enjoy most, which is surgery.

    The medical doctor with a scoliosis specialty would be able to learn the great techniques that the Europeans have developed and would actually support the parents in this lifelong treatment. They would be doctors who wouldn't have a problem with bracing kids and thinking what a terrible, horrible, thing to have to do to the poor fluffy bunnies. They would be able to monitor, and easily refer patients to an orthopedic surgeon if necessary and in discussion with the parents.

    These MDs would also run their x-ray rooms with people who can actually follow the safety procedures for these scoli patients. It is unbelievable to me that the best children's hospitals and orthopedic surgeons can't even get an x-ray with the patient's back facing the machine. These scoliosis specialist MDs, because they were interested in it and not too busy running to the operating room, would make sure the safety guidelines were ensured.

    It sounds like a total win-win to me!

    Brooke, I take it that Dr. Rigo is not an orthopedic surgeon, but some other type of medical doctor?

  7. #37
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    Can't tell you how many battles I've had to fight in the x-ray room--even when the order specifically says PA and "must shield".
    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

  8. #38
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    Balletmom-

    I absolutely agree, and hope that scoliosis care heads in this direction- although there are some chiropractors whom I believe could play a part in treatment/therapy/pain reduction.

    As far as x-rays, don't even get me started. My daughter has had some x-rays taken so inappropriately, it is beyond my comprehension-again, all at top hospitals. As in, the technician hasn't got a clue and fully zapped her. As, in, after thoroughly discussing breast/ovary coverage with the head of radiology, the technician covered her thighs as opposed to her ovaries. As, in her breasts were not covered because then "we won't see the curve." How hard is it to create small pads to put over the breast area? I have tried to become an expert in this area, despite not being one-and I probably know more about covering here than the people that do this every day.

    Having to go to Spain for treatment is not practical or economical (unless you have no insurance-then going, staying, and getting a brace will probably cost you less than getting it here. This is not my reason for going however). Dr. Rigo is an MD.

  9. #39
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    Quote Originally Posted by Pooka1 View Post
    Chiros, being practically the only people in the US offering the brace, have a built in clientele that they would not otherwise have. That is "a" reason to go to a chiro at the moment.
    I agree.
    Once you have a diagnosis and a qualified orthopaedic doctor has ruled out other issues and says the child is an appropriate candidate for bracing, and, if bracing with the SpineCor is the route you decide to go, then I think it reasonable to consider going to the Chiro's in the states that offer it.

    I suspect that some may have more experience than the inventors.

    But, I also suspect you might be offered or encouraged to incorporate some additional, perhaps more questionable, treatments such as vestibular testing. You can always decline those if you dont feel they are appropriate and likely still get a brace correctly fit.

    But, you're right. Given the choice, most would probably opt for an orthopaedic doctor. Unfortunately, here in the states, that choice is severely limited.

    I do find it irritating and misleading that they go by the title "Dr". I suspect a few people erroneously give that title the same weight as a MD. But that is the convention here. We cant blame an individual Chiro for that and I suspect the good ones are ethical and would refer a patient to a MD if they suspect the situation warrants.

  10. #40
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    Blood from a stone

    Quote Originally Posted by bas2101 View Post
    And, I resent that they [surgeons] are the gold standard for treatment, when they offer few choices. This is a disservice to many kids, and adults.
    This is very unfair. You are asking surgeons to get to blood from a stone and then blaming them for not doing it.

    Either there are viable, effective non-surgical choices or there aren't. You seem to be claiming there are all these wonderful effective conservative choices out there but surgeons are withholding them from patients for, what reason? Because they are evil? Because they are too dumb to know an effective conservative treatment when they see one?

    If they are withholding conservative treatments it's because they haven't seen evidence of efficacy and are unwilling to experiment on kids outside of a controlled study.

    You mentioned you don't want to post your daughter's curve measurements and dates until you have more data (or something... I forget). That's fine but I suggest the people here who are interested in the alternative treatments you tried would like to see those numbers. Can you post them? Have you found an alternative treatment that worked to slow the curve? You mention your tried many so that suggests that all but the last one that you are trying now did not work. Is that correct? If true, you should post so others coming along will know.
    Last edited by Pooka1; 11-06-2009 at 02:41 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."

  11. #41
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    bas2101,

    Good luck with the nuerologist. There is a known connection between syrinx and scoliosis. The exact mechanisms of this connection are unknown at this time. When a syrinx is present- scoliosis progression is usually very rapid. I suspect this may have been the situation with your daughter. I find it strange that the orthopedics disregarded the syrinx. Immediately upon seeing my daughter's large curve at such a young age, we were sent for an MRI. Then no orthopedic would touch her until we dealt with the Chiari/Syrinx. This is the protocol as far as I know it.

    As far as using a chiro- I initially struggled greatly with this idea. In fact, I planned on going to Montreal. But as life would have it, this particular person was training someone within 5 miles of my home. I saw him, heard what he said. Watched and waited a while longer then decided to try it. There are now chiros closer to me that I could use, but I don't. Instead I travel to see this person because he does have extensive experience using the Spinecor brace. He only braces my daughter. There are no adjustments of any kind. There is no vestibular testing or anything else. These were the conditions that I decided on -having an understanding of ALL of her conditions- not just the scoli.

    I have no "proof" nor "evidence" that any of this will work. Up to this point it is causing her no harm. I asked her today if she could get rid of the brace today, would she? Her response was, "I really don't care." This makes it worth a try. If it were harming her in anyway, affecting her self esteem, making her uncomfortable, then I am sure I would have given up by now.
    Emily's mom-11 1/2 years old
    28 degree scoliosis 9/04
    Chiari Malformation/SM decompressed 11/04
    17-24 degrees 11/04-6/07
    Wearing Spinecor Brace since June 07
    3/31/10- 29 degrees oob
    11/18/09 17 degrees in brace

  12. #42
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    Pooka1-

    I am not sure I am blaming them for what they lack, but if you would like to call it blame, then fine. I resent that they are the standard for scoliosis treatment, and that they do not vigorously focus on prevention. And, when a patient takes their own care into their own hands, they dismiss that patient's ability to make their own choices (many of them at least).

    How many of them are focusing on moving beyond watching/waiting, bracing, and surgery as options? How many are looking at etiology, beyond ordering an MRI, which only tells a fraction of possible causes? How many are looking at genetic factors, aside from the visibly obvious? Why will one parent hear about VBS and another doesn't? Why did your surgeon spot possible under-lying Marfan's and I had to hear it from a PT? Why offer bracing when bracing is not always proven effective? Is this not experimenting? Why experiment here and not with exercise or PT? Do I think they are evil? Do I think they are purposely withholding information? No. But, they can be ignorant. And, in my opinion, they do not explore the many facets of this disorder that they should be exploring if they are going to hold the throne for treatment.

    Do honestly think that most of them are aggressively attempting to further the preventative knowledge base, except for maybe trying to figure out if bracing works or not (even this I doubt is an aggressive effort), and improving surgical techniques? I doubt it. But, then I wouldn't want my surgeon focusing on this either, I would want them improving their surgical skills. Which again, is why I do not think they should be the standard in scoliosis care, until a patient chooses surgery.

    I never once claimed there are a whole bunch of great options out there. Quite the opposite-I know from trying many of them that they don't work-or rather, they did not work for my daughter. While I can not say whether or not any of our past treatments slowed my daughter's curve (I will never know this), I know they did not stop it. I will not outright name the long list of everything we have tried, because for some people, these treatments have helped in one way or another. And, for us, many of the practitioners we sought were invaluable to us in other ways. No practitioner we ever got treatment from ever guaranteed they could reduce my daughter's curve. Never, once.

    As far as my daughter's current treatment, I will post her numbers after her x-ray next Tuesday. You can make your own opinion at that point. If she has progressed, I will be concerned and re-think our approach. But, I will not regret our treatment, or claim it is ineffective for everyone. Even if she has progressed, her alignment, posture, and lung capacity have all improved-do Cobb angle numbers wipe all of this out? Our choice of treatment has helped other kids to reduce their curves. Why is there no documentation of this? I don't know. It is a disservice. But, these parents have x-rays to prove it. Hopefully, their evidence will come out.

  13. #43
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    emarismom-

    The ortho did not dismiss the syrinx, the neuro who was handling it did. The ortho ordered the MRI, and then sent us to a neuro who felt it was insignificant.

    I have also have no proof, at least in my hands, except what I know of other kids who have been helped by our current treatment. Nothing we were offered by the orthos was proof either-no proof that a Boston brace would work, no proof that surgery will take away her pain, or not cause other pains, or not need to be revised in the future.

    Like you, I don't see the harm in at least trying. I always ask my daughter how she feels about her current treatment. As far as bracing, it is hard, but she has found ways to wear it without it showing at all. Physically, the brace does not bother her at all. Schroth is hard to keep up, but for some kids, it is no big deal, and they do it every day without a problem. If she tells me she is done with all of this, then I will respect that and move on to other pastures.

  14. #44
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    Quote Originally Posted by bas2101 View Post
    Pooka1-

    I am not sure I am blaming them for what they lack, but if you would like to call it blame, then fine. I resent that they are the standard for scoliosis treatment, and that they do not vigorously focus on prevention. And, when a patient takes their own care into their own hands, they dismiss that patient's ability to make their own choices (many of them at least).
    Well you are paying for their expertise. If you don't want it then you shouldn't go to a surgeon. (But you open yourself up to possible withholding treatment charges though.) They are simply trying to give you your money's worth. I realize you don't view it that way but as an outside person reading your testimonial, that's how it seems to me. Had they not done that you could have reported them for malpractice (whether you see it that way or not). So maybe they are doing a CYA - covering their bases. Either way, I don't see that the surgeons you dealt with had any latitude to act differently. (N.B. The EPO thing, if reported accurately, is outrageous in my opinion. I think at some point you would have had to sign a waiver that you were participating in a study so I doubt you never would have know the experimental nature, though.)


    How many of them are focusing on moving beyond watching/waiting, bracing, and surgery as options? How many are looking at etiology, beyond ordering an MRI, which only tells a fraction of possible causes? How many are looking at genetic factors, aside from the visibly obvious? Why will one parent hear about VBS and another doesn't?
    Aside from VBS, you are asking them to step outside their specialty and into biochemistry, neurology, medical genetics, etc. People get PhDs in these subjects and do years of research to know what the heck they are talking about (aside from Dingo who thinks he is picking this up in his spare time with no training whatsoever). I wouldn't go to a surgeon who seemingly had the time to have more than one specialty but that's just the kind of hairpin I am.

    Why did your surgeon spot possible under-lying Marfan's and I had to hear it from a PT?
    Actually, he never mentioned Marfan's. I mentioned it and asked what he thought. The pediatrician also never mentioned it. I mentioned it and asked what she thought. I had to mention it to her as I needed a referral to a pediatric cardiac surgeon and a geneticist because I figured out that they might have Marfan's, not that this requires any great skill... anyone who can read a list of signs/symptoms and has a kid with scoliosis and certain other signs/symptoms could figure out that Marfan's might be something that needs to be ruled in/out.

    Why offer bracing when bracing is not always proven effective?
    I think surgeon's do this because of a combination of the following:

    1. it is the standard of treatment despite having no good evidence of efficacy,

    2. they are hopeful it might work and certainly nobody has shown it can't work under the right circumstances, and

    3. some parents simply will not watch and wait even though watching and waiting isn't obviously worse than bracing or PT for permanent curve halting or regression.

    Is this not experimenting?
    It is not experimenting when it isn't done within the context of a controlled study. It is just scattershot usage.

    Why experiment here and not with exercise or PT?
    That's a reasonable question. I think its because orthotics has traditionally been the game of orthopedic surgeons moreso than PT but I don't really have a good answer.

    Do I think they are evil? Do I think they are purposely withholding information? No. But, they can be ignorant. And, in my opinion, they do not explore the many facets of this disorder that they should be exploring if they are going to hold the throne for treatment.
    All you have to do is walk in there with a bunch of controlled clinical trials for these other treatments. That would cure their ignorance. Of course like the ped. neurosurgeon Samdani in that torso rotation video, he is familiar with what has and has not been published in the PT field which is precisely what drives his skepticism. It's what drives everybody's skepticism.

    Do honestly think that most of them are aggressively attempting to further the preventative knowledge base, except for maybe trying to figure out if bracing works or not (even this I doubt is an aggressive effort), and improving surgical techniques? I doubt it. But, then I wouldn't want my surgeon focusing on this either, I would want them improving their surgical skills. Which again, is why I do not think they should be the standard in scoliosis care, until a patient chooses surgery.
    Who should be the gold standard then?

    I never once claimed there are a whole bunch of great options out there.
    Well that's how it read. Apparently I misunderstood you. Apologies
    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. #45
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    Yes, I was paying for their expertise, but this was in the beginning, years ago when I knew of no one else to go to. When I returned years later, I went precisely because I feared my daughter was well within surgical territory, which she was.

    I assume the ortho would have had to legally have us sign something in regards to the EPO use, but was he planning on this on the day of surgery? Could he not have told us this when I inquired about it beforehand?

    I am actually not asking them to step outside of their specialty, I wish they would step outside of their role as the standard for scoliosis treatment-aside from surgery of course.

    I didn't mean to insinuate that I have an issue with bracing just because it is not "proven." I actually am for it, in the sense that my daughter is braced. I do however believe there has to be a better way. I merely mentioned it as a point on experimentation.

    I suppose anyone could walk in with a bunch of controlled clinical studies that prove something, but are these surgeons just waiting around for them? How many of them are driving the search? Again, this is why I don't think they should be the standard.


    The gold standard? I mentioned earlier in the thread, that scoliosis should treated with an integrated approach between many physicians, including the surgeon, if need be. Since scoliois affects many systems of the body-nervous, skeletal, muscular, immune, respiratory, endocrine (potentially), and also connective tissue, lungs, heart, genes, and so on, there should as many specialists, treating a patient in tandem. Including orthorist & PT if need be. Perhaps this sounds crazy, but in not approaching it this way-that to me is crazy. Why over look something, especially since scoliosis can be caused by, and cause many different problems? Doesn't it bother you that you had to address the Marfan's yourself? While the signs may have been obvious to you, they are not obvious to every one else. It bothers me that I have had to search out several doctors on my own with mostly my own research; cardiologist, optometrist, rheumatologist (just in case), geneticist (this is next), endocrinologist (potentially next) and the numerous other therapists we have been. I at least have a pediatrician who knows my aim. A one-stop shop for scoliosis would be nice. I do not think it is too much to ask for, considering what our kids, and us as parents, have to go through will all of this.

    In the meanwhile, I do not think the orthos should be filling this gap-they are too specialized in one area. If anything, they should be begging for an integrated approach, considering what they don't know. Who should? I don't know.

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