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Thread: Articles on Infantile Idiopathic Scoliosis

  1. #16
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    Some curves are just inflexible to begin with - it's just random bad luck.

    Toni,
    despite such a large, inflexible curve from such a young age, your back looks amazing You really should post one of your pictures.

  2. #17
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    Thanks Celia, yes I know I have been extremely fortunate to have had such a brilliant surgeon. He treated me for 27 years before he retired. Most of the cosmetic correction was achieved by the thorocoplasty operations as I still have a 45/35 degree curve and they never did manage to derotate my spine because they used a Harrington rod.......this is why I am such an advocate for thorocoplasties! My spine is still extremely twisted round but the rib hump has been flattened as much as possible

    I think I was also very lucky to have a double major curve. Despite the initial severity of both curves, they did balance each other out. A smaller, single curve would probably have had more of a cosmetic effect.

    I sometimes wonder if my curves held for so long *because* they were always so stiff. Maybe if they were more flexible they'd have deteriorated a lot quicker!

    There are photos at the gallery at scoliosis-support.org and also at the Yahoo infantile scoliosis group if anyone would like to see them :-)

  3. #18
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    Quote Originally Posted by tonibunny
    Thanks Celia, yes I know I have been extremely fortunate to have had such a brilliant surgeon. He treated me for 27 years before he retired. Most of the cosmetic correction was achieved by the thorocoplasty operations as I still have a 45/35 degree curve and they never did manage to derotate my spine because they used a Harrington rod.......this is why I am such an advocate for thorocoplasties! My spine is still extremely twisted round but the rib hump has been flattened as much as possible
    That's interesting ! I read somewhere that spinal fusion on infantile curves does not correct the deformity in any significant way because the rib hump continues to progress even after the fusion surgery. So even though your surgery was done at ten years of age, you still ended up with a significant rib hump that was corrected through a thorocoplasty.

    I've attached a few pictures of Deirdre for those who haven't seen it. I think we were/are so fortunate to have two of the BEST doctors in the world treating her: Dr. Douglas Hedden who is now Chief of Surgery at Stollery Children's Hospital in Edmonton, Alberta and Dr. Charles Rivard in Montreal, Quebec (both Canadians by the way ) I've included the initial x-ray at 19 months of age for comparison purposes.

    http://i41.photobucket.com/albums/e2...Picture144.jpg
    http://i41.photobucket.com/albums/e2...Picture133.jpg
    http://i41.photobucket.com/albums/e2...Picture129.jpg
    http://i41.photobucket.com/albums/e2...Picture135.jpg
    http://i41.photobucket.com/albums/e2...Picture077.jpg
    Last edited by Celia; 03-10-2006 at 09:23 PM.

  4. #19
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    Quote Originally Posted by Celia Vogel
    That's interesting ! I read somewhere that spinal fusion on infantile curves does not correct the deformity in any significant way because the rib hump continues to progress even after the fusion surgery. So even though your surgery was done at ten years of age, you still ended up with a significant rib hump that was corrected through a thorocoplasty.
    I already had a significant rib hump by the time I was ten Here's a photo taken six months before my surgery, which I think you've seen before - it's not very clear but you can sort of see:

    http://img.photobucket.com/albums/v2...show_slife.jpg

    (cool outfit hey!)

    It's interesting that you say that infantile rib humps continue to progress after fusion. Mine did but I didn't know this was common in infantile scoliosis. I had one costoplasty at 18 and another one when I was about 26. I had a huge amount of rotation but barely any kyphosis, which meant that I had a very sharp "shark's fin" type of hump.

  5. #20
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    Whoa! That 60 degree curve is impressive. Very scary.
    Her correction is also impressive!
    She's beautiful!
    God has used scoliosis to strengthen and mold us. He's good all the time!On this forum these larger curves have not held forever in Spinecor,with an initial positive response followed by deterioration. With deterioration, change treatment.The first year she gained 4 or 5 inches and was stable at around 20/20 in brace, followed by rapid progression the next year.She is now 51/40 (Jan2008)out of brace (40/30 in Spinecor) and started at 38/27 out of brace(Jan2006.) Now in Cheneau.

  6. #21
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    Thanks Cheryl The initial x-ray gave me quite a fright the first time I saw it. To look at her, you wouldn't think she had such a significant curve. I remember having my two little ones in a double stroller that day and they couldn't see me because I was behind them pushing the stroller - I was crying all the way home. I was a total mess. If we had a different doctor, I'm sure Deirdre would have had spinal fusion or the VEPTR by now.

  7. #22
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    You are such a valuable resource for the parents dealing with infantile, juvenile, and adolescent scoliosis. Thanks for all you share. I have learned so much from you and Gerbo.

    I don't understand why casting is not more widely used in infantile scoliosis. It seems that until YOU tell the parents about it, they are completely unaware of the possible benefits. Not only that, but the lack of urgency that seems to prevail among the physicians that are treating these children is alarming.

    Go figure.

    The lack of concern, interest, and knowledge exhibited by many physicians is staggering to me.
    Last edited by cherylplinder; 03-09-2006 at 11:38 AM.
    God has used scoliosis to strengthen and mold us. He's good all the time!On this forum these larger curves have not held forever in Spinecor,with an initial positive response followed by deterioration. With deterioration, change treatment.The first year she gained 4 or 5 inches and was stable at around 20/20 in brace, followed by rapid progression the next year.She is now 51/40 (Jan2008)out of brace (40/30 in Spinecor) and started at 38/27 out of brace(Jan2006.) Now in Cheneau.

  8. #23
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    Quote Originally Posted by cherylplinder
    The lack of concern, interest, and information exhibited by many physicians is staggering to me.

    I find most doctors/parents have a very blase attitude towards infantile or even juvenile scoliosis - they confuse it with the adolescent variety. Parents are lulled into a false sense of security by orthos who tell them that their child probably has the "resloving" type of infantile scoliosis without doing the necessary tests to determine this !!!! Parents are told that 90 % of infantile curves resolve - are these percentages accurate Has anyone done a conclusive study to determine this ? I think not ! Parents are told to "watch and wait" and to return for a followup clinic appointment in 4 or sometimes even 6 months !!!! An infantile curve can potentially progress 30 to 50 degrees within that time frame. Progressive infantile scoliosis is a ticking time bomb, it can lead to severe, crippling deformity where the only recourse is surgery. I've heard people say that scoliosis is not an "emergency situation" well... IT IS for infantile curves. Furthermore, many parents believe that surgery is a "cure all" nothing could be further from the truth ! Even after surgery, these children will STILL have very significant deformities and cardio pulmonary problems which will last a life time. The best treatment is to treat it early and treat it aggressively ! Can you tell this is a topic that makes my blood boil


    Toni, that dress is too cool ! Deirdre wore a lot of tent dresses too She now wears a lot of groovy girl clothes.
    Last edited by Celia; 03-09-2006 at 07:30 AM.

  9. #24
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    I have learned so much from you and Gerbo.
    that makes me a bit nervous, I am just making it up as I go along. Results wise, I have nothing to show for at all (yet), unlike Celia who has got "living evidence" of the benefits of the approach advocated by her.

  10. #25
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    Quote Originally Posted by gerbo
    that makes me a bit nervous, I am just making it up as I go along. Results wise, I have nothing to show for at all (yet), unlike Celia who has got "living evidence" of the benefits of the approach advocated by her.
    No worries!

    I am confident from what I've read, that this is at least worth a shot, and am currently pursuing my other options if I get bad news in April. The level of integrity and concern I found in Dr. Rivard also gave me comfort and confidence. I think he is a rare breed.

    But I really appreciate the time and effort you both put into posting research articles. There is no question that it is of tremendous benefit.

    I know that you are guarded in your recomendations at present. I feel the same. But is of immeasurable benefit to the other parents dealing with these issues to at least have the benefit of knowing their options.

    I think you are both treasures! Thanks!
    God has used scoliosis to strengthen and mold us. He's good all the time!On this forum these larger curves have not held forever in Spinecor,with an initial positive response followed by deterioration. With deterioration, change treatment.The first year she gained 4 or 5 inches and was stable at around 20/20 in brace, followed by rapid progression the next year.She is now 51/40 (Jan2008)out of brace (40/30 in Spinecor) and started at 38/27 out of brace(Jan2006.) Now in Cheneau.

  11. #26
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    cheers

  12. #27
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    Cheryl,

    You know, I've been called a lot of things.....but definitely NOT a treasure
    Although.... I must admit Gerbo is a real gem
    Last edited by Celia; 03-10-2006 at 09:47 AM.

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