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Thread: Who Decides?

  1. #106
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    Quote Originally Posted by mamamax View Post

    I also think it is important not to deem an entire profession corrupt due to the unethical practices of a few.

    Oh, I totally agree with this I'm sure that the vast majority of chiros are ethical and honest, and have no problems working with medically qualified doctors when it is necessary for the best interests of their patients.

    What's worrying is that a lot of those that I've seen promoting themselves on scoliosis websites have been ones that are trying to mislead or scare people, and they're doing the honest members of their profession a great disservice.

  2. #107
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    I totally agree with you Toni! Those in any profession who would intentionally embellish, twist, and distort truth for the sake of misleading (and scaring) others do a great disservice to us all. Lord knows the truth is scary enough without altering it.

    That dern Mayan calender comes to mind as an off topic example - many well respected scientific minds see its ending as a simple reset - but for the sake of entertainment (and profits) there are those making it appear as a terrifying doomsday prophesy.

  3. #108
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    Follow up....


    My dd was dx with scoliosis at 7 yrs old with 40T/23L. That was 2002. It was suggested that we either brace her for somewhere around 10 years, or try growing rods. Both prognoses for treatment were not good according to the orthopedists, so we set out to try all and everything we could find otherwise.

    I do not wish to list the numerous treatments we sought from 7-12 years old, because I do not wish to degrade a treatment, simply because it did not halt my daughter’s progression.

    By Jan 2008, almost 13 yrs old, my dd had progressed to 68T/46L or 70T/42L (depending on who read it). We were considering surgery at this time, but were not convinced we had tried everything. At this time she was pre-menarch, Risser 0, and had a lot of growing left to do.

    In Feb 2008, we immediately began Scrhoth and a Rigo-Cheneau brace. She has been wearing the brace 23/7 (with the exception of Schroth, PE, and the occasional break), and doing Schroth 5x/week for about 45 minutes each (sometimes less). She has been doing this for the last 1 year and 8 months.

    Her current out of brace x-ray reads 59.5T/50L. While, she is nowhere in the clear, she has improved while growing over 4 inches.

    When we saw the surgeons in Jan 2008, they said there was nothing we could do, and that her surgery could not even wait until summer because of the threat of further progression. She was pre-menarch, Risser 0, and still had a lot of growth left. Yet, these indicators were the same reasons we were still able to brace her and have some confidence that it would either stabilize or improve her curve. While her growth was her enemy, it was also her only hope.

    While, scoliosis will always be a part of my dd’s life, I believe our positive experience is a testament to Cheneau/Schroth. My daughter was pre-menarche, Risser 0, and grew over 4 inches, while taking her main curve from 68-70 to 59.5 (60 if you wish). She also improved her lung function (which is over 100%), her alignment by over 4.5 cm, and was able to carry out her growth. I only wonder what improvements she would have had if we had started this sooner (oh well!).

    Since she is currently still growing at 14 yrs, Risser 2, and barely post-menarche, she will remain braced for the next year or so, and then begin the weaning process-at which point, Schroth will be more important for her quality of life. If she chooses surgery in the future, it will be her choice. But, for now, her scoliosis is manageable, and not the emergency it was made to be 2 years ago.

    Anyone interested in more details, can PM me.

  4. #109
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    Quote Originally Posted by bas2101 View Post

    My dd was dx with scoliosis at 7 yrs old with 40T/23L. That was 2002. It was suggested that we either brace her for somewhere around 10 years, or try growing rods. Both prognoses for treatment were not good according to the orthopedists, so we set out to try all and everything we could find otherwise.


    By Jan 2008, almost 13 yrs old, my dd had progressed to 68T/46L or 70T/42L (depending on who read it). We were considering surgery at this time, but were not convinced we had tried everything. At this time she was pre-menarch, Risser 0, and had a lot of growing left to do.

    In Feb 2008, we immediately began Scrhoth and a Rigo-Cheneau brace. She has been wearing the brace 23/7 (with the exception of Schroth, PE, and the occasional break), and doing Schroth 5x/week for about 45 minutes each (sometimes less). She has been doing this for the last 1 year and 8 months.

    Her current out of brace x-ray reads 59.5T/50L. While, she is nowhere in the clear, she has improved while growing over 4 inches.
    Hi Brooke,

    I think it's wonderful that you were able to make your own decisions regarding your daughter's treatment and it has been successful for you. Thank God we live in a country where we are still able to make our own treatment decisions, at least for the moment.

    I really think the Cheneau brace should be studied more here in the U.S. I think it is able to get greater correction than the typical TLSO braces out there, and apparently works three-dimensionally also, and so gets better results than a lot of the braces out there, even on the more aggressive curves.

    I have to say, my daughter has obtained excellent results using over-correcting night braces and exercising the spine daily through ballet, not Schroth. So other things work also, however, I do see the Cheneau/Shroth combo seemingly to work well on the most agressive curves and that should certainly be in the US orthopedists' arsenal....not simply ignored because it's from Europe.

  5. #110
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    Quote Originally Posted by bas2101 View Post
    Maria-

    Thank you for getting the VBS info out there. Even though my daughter is no longer a candidate, she would have been. And, the procedure was around when she was dx, only no one mentioned it to us. I don't expect that the doctors should have recommend it against their better judgment, but they could have at least mentioned it as treatment that was currently being used for scoliosis. I assume they knew it was being used. Then, we at least would of had the option to look into it further. And, would potentially not be in the position we are in today.

    Brooke
    Hi Brooke,

    I just wanted to point out that according to Dr. Betz himself, thoracic curves greater than 35 degrees have "dismal" results with the stapling. They are now starting to use growing rods in conjunction with the stapling on curves greater than 35 degrees which means mutliple surgeries during growth, just like regular growing rods. And still, no longterm follow-up. Bracing has been around a long, long time, and no surgery required.

    Here's a link to the presentation made by Randy Betz MD, regarding the stapling results at this year's POSNA conference in case you're interested.

    Look for the video entitled "Is Non-Fusion Surgery the Answer in AIS? Clinical Outcomes of NITINOL Staples".

    Click on the "One Day Course-Adolescent Idiopathic Scoliosis: Understanding the Deformity and Current Treatment" first.

    http://posna.gmetonline.com/Presenta...onpackageid=31

  6. #111
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    Balletmom-

    Thank you for the information. I will take a look.

    I am glad your daughter is doing well. I hope I didn't insinuate that I think Cheneau/Schroth is the only option out there. I just know it is one option that has worked for some kids-appropriate literature or not. I wanted to relay our experience, and others can take from it what they like.

  7. #112
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    Quote Originally Posted by Ballet Mom View Post
    Hi Brooke,

    I just wanted to point out that according to Dr. Betz himself, thoracic curves greater than 35 degrees have "dismal" results with the stapling. They are now starting to use growing rods in conjunction with the stapling on curves greater than 35 degrees which means mutliple surgeries during growth, just like regular growing rods. And still, no longterm follow-up. Bracing has been around a long, long time, and no surgery required.

    Here's a link to the presentation made by Randy Betz MD, regarding the stapling results at this year's POSNA conference in case you're interested.

    Look for the video entitled "Is Non-Fusion Surgery the Answer in AIS? Clinical Outcomes of NITINOL Staples".

    Click on the "One Day Course-Adolescent Idiopathic Scoliosis: Understanding the Deformity and Current Treatment" first.

    http://posna.gmetonline.com/Presenta...onpackageid=31
    Ballet Mom,

    That link did not work for me unfortunately.

    In any event, it's true that Dr. Betz and others have refined the criteria for VBS to include mainly curves in the mid-30's and below.

    That said, my own son was "stapled" at 40 degress almost six years ago and is doing well. I know several other children who were around 40 degrees when they had VBS performed and are also doing well a few years later. Many were younger children, such as my son who was 5 1/2 at the time of surgery.

    Because the results on curves over 35 are not as good as the results for curves under 35 degrees (which have extremely high success rates), Dr. Betz has chosen that point as the general cutoff - reason being, he does not want to see surgery performed on any child without a very strong chance of success.

    I know this not because of articles I've read online, but because I see Dr. Betz every 4-6 months and I often e-mail him with questions as well. I try to keep up on all the latest data and information with regard to VBS since I co-moderate a VBS website and want to be able to give parents the latest, most accurate information. He's been wonderful and very forthcoming in providing this information.

    It is also important to note that each child is evaluated on an individual basis in order to determine if they are good candidates for VBS. So a child with a curve in the high 30's who is, let's say, very flexible might be considered a candidate, while a child with a 30 degree curve might not - if, say, there was not enough growth remaining for VBS to be effective.

    In addition, Dr. Betz and his team often recommend bracing if they feel it is the best option for a particular child.

    For these reasons, the best thing to do - if one is interested in VBS or any other treatment method for that matter - is to seek a consult by a doctor who is trained in these treatment methods.

    While the hybrid rod being used at Shriners (which is more similar to the VEPTR in how and where it is attached, and therefore does not cause spontaneous fusion like traditional growing rods) is a surgery that requires lengthenings 1-2 times per year, for some children (whose curves have proven to be too aggressive for either bracing or VBS to be effective), it is the only option (other than fusion). I know a girl who just had a lengthening this past week and she was back in school within 2 days! That is NOT to take any surgery lightly - but again, some curves do require a more aggressive form of treatment, in the hopes of avoiding fusion if possible.
    Last edited by mariaf; 11-14-2009 at 09:10 PM.
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  8. #113
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    Quote Originally Posted by Ballet Mom View Post
    Bracing has been around a long, long time, and no surgery required.
    I have to assume you mean that no surgery is required IF bracing is successful. Of course, we all know patients for whom bracing failed and they went on to fusion.

    I'm not knocking bracing - just trying to clarify the statement.
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  9. #114
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    Hi Maria,

    That link did not work for me unfortunately.
    I think the site maxed out on it's broadband quota, try again today.


    In any event, it's true that Dr. Betz and others have refined the criteria for VBS to include mainly curves in the mid-30's and below.

    That said, my own son was "stapled" at 40 degress almost six years ago and is doing well. I know several other children who were around 40 degrees when they had VBS performed and are also doing well a few years later. Many were younger children, such as my son who was 5 1/2 at the time of surgery.
    I was talking about thoracic curves. Dr. Betz states that six of the eight thoracic curves greater than 35 degrees progressed past fifty degrees. That is dismal. The lumbar curves have a much better success rate with stapling. Of course, bracing is also more effective on lumbar curves than on thoracic curves.
    ...

    It is also important to note that each child is evaluated on an individual basis in order to determine if they are good candidates for VBS. So a child with a curve in the high 30's who is, let's say, very flexible might be considered a candidate, while a child with a 30 degree curve might not - if, say, there was not enough growth remaining for VBS to be effective.
    That is also cherry-picking the kids who would be most-likely to be successful with bracing, i.e. those with a flexible spine. It is interesting that by stapling the thoracic curves that are less than or equal to 35 degrees, Dr. Betz had a success rate of 79 percent...defined by an increase of ten degrees or less, apparently. That doesn't seem much better than bracing by itself.

    I'm sure this surgery has its uses, if my child was going to spend ten years in a brace I might be looking into it, or if I had a child that absolutely refused to wear a brace. However, if my daughter had been stapled with her 35 degree thoracic, extremely flexible curve, she may very well have ended up with fusion surgery.
    Last edited by Ballet Mom; 11-15-2009 at 10:33 AM.

  10. #115
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    Quote Originally Posted by mariaf View Post
    I have to assume you mean that no surgery is required IF bracing is successful. Of course, we all know patients for whom bracing failed and they went on to fusion.

    I'm not knocking bracing - just trying to clarify the statement.

    I meant no surgery is required to begin or during brace treatment. If the treatment fails, then surgery may be required, as we all know.

    The whole purpose of my post was just to let Brooke know that it was appropriate that her orthopedists didn't refer her onto this procedure because now that more data is in, her daughter most likely would have ended up with fusion surgery.

  11. #116
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    Quote Originally Posted by bas2101 View Post
    Balletmom-

    Thank you for the information. I will take a look.

    I am glad your daughter is doing well. I hope I didn't insinuate that I think Cheneau/Schroth is the only option out there. I just know it is one option that has worked for some kids-appropriate literature or not. I wanted to relay our experience, and others can take from it what they like.
    I think it's great you shared your details. I think your data should help convince people that the Cheneau brace should be studied in more detail here in the States. Thank you.

  12. #117
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    I am not necessarily convinced that VBS would not have been an option for my daughter. She was only 7, and very flexible. While 6/8 progressing to surgery seems dismal, it is only 6/8. Not a very large group. But, what is past is past, and I'll never know. So, hopefully others will.

  13. #118
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    Quote Originally Posted by Ballet Mom View Post
    Hi Maria,



    I think the site maxed out on it's broadband quota, try again today.




    I was talking about thoracic curves. Dr. Betz states that six of the eight thoracic curves greater than 35 degrees progressed past fifty degrees. That is dismal. The lumbar curves have a much better success rate with stapling. Of course, bracing is also more effective on lumbar curves than on thoracic curves.
    ...



    That is also cherry-picking the kids who would be most-likely to be successful with bracing, i.e. those with a flexible spine. It is interesting that by stapling the thoracic curves that are less than or equal to 35 degrees, Dr. Betz had a success rate of 79 percent...defined by an increase of ten degrees or less, apparently. That doesn't seem much better than bracing by itself.

    I'm sure this surgery has its uses, I know if my child was going to spend ten years in a brace I'd be looking into it or if I had a child that absolutely refused to wear a brace. However, if my daughter had been stapled with her 35 degree thoracic, extremely flexible curve, she may very well have ended up with fusion surgery.
    Hi Ballet Mom,

    By the way, my son's curve is thoracic (which I actually never thought of pointing out but I guess it's relevant).

    I agree with bas2101 that 6/8 is a very small group. In fact, I personally know another child, besides my son, that had two curves (T/L) and started out at 42 degrees before VBS and is now also in the mid 20's about 3 years post op. Can these be the two successes? I find that strange but I guess it's possible.

    You make a very good point though when you say that curves that will respond well to VBS may very well be some of the same ones that respond well to bracing (although, as in my son's case, bracing was only holding the curve, whereas VBS can reduce it). That's why VBS is sometimes referred to as an alternative to bracing.

    Would I opt for VBS if my child had, say, a 30 degree curve and only had a year or two of bracing remaining in order reach skeletal maturity? Of course not.

    But there are so many factors to take into consideration (size and location of curve, how much growth is remaining, whether or not the curve is flexible, whether or not compliance with bracing will be an issue, etc.).

    It's so hard for any of us to say whether bracing, or VBS, will prevent fusion for a particular patient. I doubt the doctors even know. So all we can do, as parents, is educate ourselves, get a few opinions from doctors trained in the treatment method(s) we are pursuing (whichever ones they may be), and make a decision from there based on our child's particular situation.

    I will all of our children the best possible outcome
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  14. #119
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    Hi Brooke,

    That's great that your dd's curve has improved. Hopefully with the months remaining she will see more improvement. I have become a believer in the Cheneau brace for many kids. That a child with a curve as progressed as your dd's can improve is a valuable thing. And she is not the only one I know of. I have personally spoken with the parent of a teenager at surgical level (who does Schroth as well) who is now under 30*. My gut (and experience with with what I know of in the practice we are in) is that younger, more flexible children with less advanced curves (under 45?) can see some fantastic results and that needs to be explored. But to be able to pull a surgical level child back from the brink is a really good result. Soon she will be mature, and surgery if she chooses it may still be in her future, but not as a young child. That's great. Thanks for posting.
    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. #120
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    Prescriptions

    We travel 12 hours to Luke for my daughter's Cheneau brace and I got the prescription by going to the appointment with my orthopedist and asking specifically for it. She is so convinced that we need surgery eventually that she did it to humor me. She also wrote me a script for Shroth PT and she'll do whatever we want just to prove to us we need surgery. If it works, then fine, but I have my scripts and that is all that matters. We also see a chiropractor who practices the Pettibon technique and who has great insight into alternative care for scoliosis (he's a hidden jewel among chiropractors). Between the two, I have a balance of information from the two opposing sides. My chiropractor is who recommended Luke, not my Orthopedist. When the day comes when the Orthopedist says it's time for surgery (and it will come), I'm not sure what we'll do, but I have a team of knowledgeable people in place to help guide me. I understand your frustrations, and I like a person who thinks outside the box
    Blessings to you!
    Tina

    • Mom of Cynthia, age 8, 67 degree curve, former Spinecor Patient and current Cheneau Brace wearer
    • Mom of Vaughn, age 5, 18 degree curve - not yet braced, but closely monitored
    • Wife of Andy, adult with 26 degree curve, diagnosed as a teenager, no bracing or surgery

    www.scoliosisfamilyadventures.wordpress.com
    www.EmBracedInComfort.com

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