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Thread: spinecor

  1. #2296
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    Sep 2007
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    Ruth--

    How difficult it must be to get such conflicting and discouraging information from the Montreal docs. My heart goes out to you--with the knowledge that, while we hope for the best, we may be in the same situation not too far down the road. My son is a bookworm, too! And I'm hoping for very good results for Esme.

    On the practical side, I want to offer some information I got from Dr. Ouellette, who says he works with both the current Spinecor manufacturers and trainers and Drs Rivard and Collard in Montreal, who he highly respects. He mentioned that in his opinion as a chiropractor, the Montreal docs like to situate the hip belt too high on the pelvis--Ouellette places it lower so that the elastic bands that snap to it can be held tight enough. Is it possible that the higher hip belt is causing the chafing and discomfort? My son (who is admittedly very thin) is having no trouble with either the crotch straps or thigh bands, and sitting is a non-issue. Two weeks into the brace, he is now wearing it 20 hours a day.

    I realize there are strong opinions on this forum regarding chiropractors vs surgeons and a strong (and justified!) allegiance to the inventors of the brace, so I hope everyone will take this for what it is--just another piece of information that we all have to take (or not take!) and make our own decisions on. I'm not suggesting anyone do anything differently than what they're doing now.

    Ruth, I hope in the next few days things will calm for you and you'll be able to see clearly the next step. That's the best we can all hope for as we move ahead on this journey.

    Mary Ellen

  2. #2297
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    Quote Originally Posted by WNCmom
    ...so I hope everyone will take this for what it is--just another piece of information that we all have to take (or not take!) and make our own decisions on. I'm not suggesting anyone do anything differently than what they're doing now.

    Ruth, I hope in the next few days things will calm for you and you'll be able to see clearly the next step. That's the best we can all hope for as we move ahead on this journey.

    Mary Ellen

    My sentiments exactly! We can only offer suggestions as to what we would do in similar circumstances and it's up to you to make the final decision... good or bad. If you want to do the weights on the head go ahead

    Canadian eh
    Daughter, Deirdre born Oct 2000. Diagnosed with 60 degree curve at the age of 19 months. Serial casting by Dr. Hedden at Sick Kid's Hospital. Currently being treated by Dr. Rivard and Dr. Coillard in Montreal with the Spinecor brace and curve is holding at "2" degrees. Next appointment 2008

  3. #2298
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    Quote Originally Posted by jillw
    Celia, I had been wondering the same thing! I believe that MaryEllen's son is treated in Atlanta so I don't know if the folks in Montreal will be the same, but I'm curious to hear what happens when you call. Thanks!

    I got a message back from the secretary in Montreal and they don't do physio in Montreal. They only do it in Spain and dr. Coillard doesn't feel Deirdre needs it. I was looking into it because of the neck curve but maybe it's a non-issue? I do tend to stress over things that turn out to be insignificant in the end.

    Canadian eh
    Daughter, Deirdre born Oct 2000. Diagnosed with 60 degree curve at the age of 19 months. Serial casting by Dr. Hedden at Sick Kid's Hospital. Currently being treated by Dr. Rivard and Dr. Coillard in Montreal with the Spinecor brace and curve is holding at "2" degrees. Next appointment 2008

  4. #2299
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    Ruth, I hope the Spinecor works in your situation! 10% doesn't seem like great odds....but then again the odds of getting scoliosis severe enough to require treatment is well under 10% and we've all beat those odds (to our chagrin) already! I hope it holds the curve for you or that you find whatever treatment that can hold the curve.

    MaryEllen, that's interesting about Dr.Oullete's theory on hip placement...i wonder if Dr. Coillard has changed that because one of the things to me is that it seems like Katie's belt is so low! - although it will go a little higher on the back side than the front which I know its not supposed to but I can't quite get it to stay symetrical yet.

    Celia, I'm not too surprised to hear they don't offer directions on the "spinecor" physio since I recall reading on the board that others had been told that those in Montreal believe that wearing the brace is a form of ongoing physio. I, too, tend to stress over things so I can relate to how you feel...the problem is while some of these issues might not matter in "the end", our children have a good 8 or more years before we've really hit "the end" so its hard to know what is insignificant and what matters, isn't it? That's what drives me crazy! And while our children may not need physio, per se, I can't help but wonder if there is a chance it could help as an adjunct??? At least that's how I feel about Katie. I'm hopeful Spinecor will work for her but I also want to give her every advantage that it would work. Given the nature of scoli, it seems to me that there is no one thing that can control it for sure, but that a more holistic approach might help push the odds in our favor (at least maybe for those at high risk of progression because of their age but whose curves aren't too large yet). I'd love to see more studies on the role of physio or exercise on those with "milder" scoli curves. I scheduled an appointment with a Pilates instructor for Katie this weekend. Assuming we actually continue this over time, I figure that while it may not help the curve directly, that a person with strong core muscles is better than somebody who does not. My daughter's natural muscle tone is a little low to begin with (hypotonia) so I don't want her to be disadvantaged by that. They seemed willing to modify some exercises to accomodate areas that might need extra stretching and those that need extra strengthening...we'll see..... (in fact if Katie didn't hate it too much I'd love for us to do some mother/daughter pilates!!! This mother's core could benefit from some extra strengthening also!
    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

  5. #2300
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    Esme made it through the whole 8 hour school day with her brace. All the teachers had been told she would be wearing it and were very considerate with her about it - letting her move around if she needed to and take it easy in gym, etc. Her friends all seem to think it is pretty neat and are encouraging her so this helps - no one is making fun of her which is a big relief. I have loosened the crotch straps a bit hoping this will make it a bit more comfortable for her.
    Ruth
    Ruth, 50 years old (s-shaped 30 degree scoliosis) with degenerative disc disease, married to Mike. Mother to two children - Son 18 and daughter 14. Both have idiopathic scoliosis. Son (T38, L29) has not needed surgery to date. Daughter (March 08 - T62, L63).

  6. #2301
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    Quote Originally Posted by jillw
    Given the nature of scoli, it seems to me that there is no one thing that can control it for sure, but that a more holistic approach might help push the odds in our favor (at least maybe for those at high risk of progression because of their age but whose curves aren't too large yet). I'd love to see more studies on the role of physio or exercise on those with "milder" scoli curves. I scheduled an appointment with a Pilates instructor for Katie this weekend. Assuming we actually continue this over time, I figure that while it may not help the curve directly, that a person with strong core muscles is better than somebody who does not. My daughter's natural muscle tone is a little low to begin with (hypotonia) so I don't want her to be disadvantaged by that.
    Just wanted to comment on you're remarks and echo that sentiment. Also wanted to add something to this whole Pilates wave going on. These comments aren't directed at you Jill, just a general blurb.

    I'd agree completely with you on taking a more "holistic" or comprehensive approach, regardless of the degree of curvature. I think it's important to understand that even if someones curve is not yet moderate or severe it doesn't mean that they can't benefit from treatment... In fact they are more likely to respond at that stage because there is less bony/disc deformation. Once it gets to the moderate and severe stage it's tremendously more difficult to change what has happened.

    I think it's worthwhile to avoid taking the same approach to scoliosis that we take to health care... Waiting for the crisis to occur before taking action. There is a lot to be said for preventative medicine here, and elsewhere.

    On core strength... Despite Pilates popularity these days I think it's important to note that core strength is often overdone in the pilates world. Too much pilates for too long ends up creating too much rigidity in the pelvis and spine. Sure, that makes for a "stable" back because it doesn't articulate very much (like wearing a muscular corset). You should be very careful about introducing Pilates to a scoliotic individual. Usually with scoliosis there is a marked increase of tonus and shortening of the inner thigh muscles (adductors) and psoas/iliacus in the lumbopelvic region. These are major areas that influence a scoliotic curve and are also conversely influenced by the curve. Pilates focuses very heavily on these muscles with all of the hip flexion and abdominal strengthening.... Which is precisely not what you need to be tightening any further. There are many top Drs/PhDs in the field of pelvic and spine biomechanics and rehab who disagree strongly with what Pilates is doing to people.

    I would suggest going to a PT for the purpose of your daughter developing strength/stability to address her hypotonicity. Pilates instructors have very little anatomy training and virtually no pathology background, especially rehab type work. Only Pilates instructors who are also PTs should be working with these types of individuals... otherwise you're taking quite a risk and you won't know the effects generally until it's too late.

  7. #2302
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    Quote Originally Posted by jillw
    ... I, too, tend to stress over things so I can relate to how you feel...the problem is while some of these issues might not matter in "the end", our children have a good 8 or more years before we've really hit "the end" so its hard to know what is insignificant and what matters, isn't it? That's what drives me crazy! And while our children may not need physio, per se, I can't help but wonder if there is a chance it could help as an adjunct???
    This is exactly how I feel! I don't think physio with a P.T. in Canada is covered by OHIP unless it's prescribed by a doctor and therefore it's an out of pocket expense - I'll have to check into this. Come to think of it....I don't think we can get physio without a doctor's script!!!!
    Last edited by Celia; 10-27-2007 at 01:01 PM.

    Canadian eh
    Daughter, Deirdre born Oct 2000. Diagnosed with 60 degree curve at the age of 19 months. Serial casting by Dr. Hedden at Sick Kid's Hospital. Currently being treated by Dr. Rivard and Dr. Coillard in Montreal with the Spinecor brace and curve is holding at "2" degrees. Next appointment 2008

  8. #2303
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    Structural, thanks for the information-there are so many things to think about!!! I wish I had millions of dollars because I would sponsor all kinds of research into how to prevent earlier curves from progressing... the doctors either seem to frown on exercise/physio or say that no study has shown it helps...I'd like to see studies that specifically focus on those with smaller curves, because as you say, intuitively it seems to me that intervention at that time might have a higher likelihood of success. So do you think one 1/2 hour pilates class a week with a little work at home for 15-20 minutes or so a couple times more a week would do damage? They know we are coming because of her scoliosis and they are working with a few other scoliotic (adults) also. I want (and plan) to look into physio also; however it will take me longer to research who I'd want to bring my daughter to...I thought in the meantime I'd get some sort of toning work started (although had been thinking at the mild amount of exercise we'd be doing it that it might not really make much of a difference). What are your thoughts on the Schroth method of physio? (you've probably posted elsewhere about that, I"ll look up your old posts)

    Celia, in the states we need a script also...since we're seeing dr. rivard I don't think a script from an out of country doctor would work. Our insurance will only cover a limited number of sessions, but I would very much like for her to do it (and nobody by us does Schroth). I'm thinking that if I could find somebody who has a scoliosis focus, I'd try to get our pediatrician to write a script. Then maybe we could go for tuneup sessions from time to time even if I had to pay out of pocket.
    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

  9. #2304
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    Celia:

    You are right that you need a doctor's prescription for physio in Ontario to have it covered by OHIP. Only some physiotherapists are OHIP authorized too. We have a script from the Children's Hospital for physio so I faxed it in to the hospital physio clinic hoping to get Esme in for treatments. They wrote us a very nice letter explaining it would be months before she would be seen because they are so busy - we are not impressed!! We are currently looking for an OHIP authorized physiotherapy clinic that works with scoliosis patients.

    Last night I found (on the internet) an osteopath in Ottawa who is also a physiotherapist so I have written to him to find out if he is working with scoliosis patients. We are interested in exploring the structural integration too and my husband thinks he has found someone in Ottawa doing this.

    While we are hoping the Spinecor brace will hold Esme's curves where they are we think the chance of this is greater if she has some other treatments as well. Also to achieve curve reduction she will definitely need some other treatments.

    Ruth
    Ruth, 50 years old (s-shaped 30 degree scoliosis) with degenerative disc disease, married to Mike. Mother to two children - Son 18 and daughter 14. Both have idiopathic scoliosis. Son (T38, L29) has not needed surgery to date. Daughter (March 08 - T62, L63).

  10. #2305
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    Somewhere I read of a clinical trial that was specifically focusing on what was thought to be weak muscles on one side of the spine that were allowing scoliosis to progress (or even develop). They were using a machine that was designed to specifically work particular muscles in the back. I can't remember where, but it was within the last year, unfortunately they were taking only those with curves of less than 45 degrees (my daughter's already exceeded that), so I didn't look into it too much. I believe it may have been at Cleveland Clinic or somewhere in that area.

    My daughter used an exercise program combining the exercise ball with pilates. Although her curves were rapidly progressing during this period, she was not brace compliant (and one doctor told her to quit wearing the brace - curves were already beyond the point of bracing), something kept her spine flexible. I believe the exercising with the ball, and the stretching, rolling over it to flex the spine...helped tremendously with keeping the curves flexible.

  11. #2306
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    Emma: Was the clinical trial Torso Rotation?
    Ruth
    Ruth, 50 years old (s-shaped 30 degree scoliosis) with degenerative disc disease, married to Mike. Mother to two children - Son 18 and daughter 14. Both have idiopathic scoliosis. Son (T38, L29) has not needed surgery to date. Daughter (March 08 - T62, L63).

  12. #2307
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    Sep 2006
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    Scroth

    Jill,

    Scroth is a great way to go as far as physiotherapy is concerned for scoliosis.

    structural

  13. #2308
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    rtremb,

    I didn't think it was the torso rotation, however, I just spent some time looking for the trial on line, and the only one I can find now that sounds similar is the one with the torso rotation machine---so, perhaps that is it??? I don't know, I really can't find the exact site that I read before. Sorry====if I come across it again, I'll save the link and post it.

  14. #2309
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    May 2005
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    ruth, i hate to say it, but i would be so, so surprised if the spinecor would make any difference at all and really you need to be planning your next moves (which i am sure you are doing already.

    neither do i think that with a curve like that any osteopath or chiropracter is going to make any bit of difference.

    torsorotation is still "my hope", but if it works at all, it is with smaller curves (although "list contains somebody with 50 degrees who improved) http://www.medxonline.co.uk/fileadmi...tscoliosis.pdf

    i can only see one obvious way forward (and by al means give the spinecor a month) and that is to accept that surgery is your main option, and start getting used to that idea!! People get through surgery ok and have an excellent correction and quality of life after; it is not the disaster we all feel it is (I am half talking to myself here)

    the only other "remote" option one could consider would be a very aggressively correcting hard brace, but you would need a hell of a lot of correction to have any chance of improvement.

    where to get one from is quite difficult to work out as there are no figures available showing initial correction rates of different clinicians/ hospitals (there should be!!)

    on the subject of these cheneau braces, in the end it is more about the person who makes them rather then the exact model or make.

    i am not aware of anybody ion the UK making them

    the only pure hearsay reports i have picked up re succesful bracing in big curves have come from a german forum; http://www.skoliose-info-forum.de/index.php , they do a english thread so you can make your own enquiries and they are very good in replying. On there they are very lyrical (similar to enthousiasm on this forum re dr coillard and rivard) about one specific bracemaker, a mr rahmouni, with very high initial correction rates reported (but possibly hell to wear, and little info about final outcomes)

    you could have a look at his webpages to get an idea of the amount of correction he "promises/ suggests he achieves" http://www.rahmouni.de/

    whether it is worth considering or not; i really don't know and in alll fairness, in our case, i think it would really be very hard for our daughter to revert back to a hardbrace, with no garantee of succes.......

    i just though i share these thoughts.....
    Last edited by gerbo; 10-29-2007 at 12:10 PM.

  15. #2310
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    Mar 2004
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    Gerbo,

    Is Lisanna doing the Spinecor physiotherapy through Mr. Mills? If so, what is involved?

    Canadian eh
    Daughter, Deirdre born Oct 2000. Diagnosed with 60 degree curve at the age of 19 months. Serial casting by Dr. Hedden at Sick Kid's Hospital. Currently being treated by Dr. Rivard and Dr. Coillard in Montreal with the Spinecor brace and curve is holding at "2" degrees. Next appointment 2008

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