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  • Anyone Interested in an Exercise Group in Montreal?

    I am curious if there any people in the Montreal area with scoliosis who want to start an exercise group. Let me explain a bit about myself and why I think an exercise group might be worth trying.

    I have s-curve scoliosis with the largest curve (40 degrees) in the left thoracic spine. I had minimal pain from my scoliosis until my late 20's (I am now 32). Exercise and a hot bath used to alleviate my aches and pains, but I think I may have created too much flexibility in my spine through years of hot yoga, because my spine feels less stable and more susceptible to pain (I can trace the increase in discomfort to when I started doing certain poses in yoga, but the pain could be due to to age or something else as well).

    In April 2010 I got the SpineCor brace (which after a horrible break in period, I find quite helpful in dealing with what feels like muscle pain to me...unfortunately, it does not help much with the stiffness and pressure I feel in my ribs on my convex side). I have also met with two surgeons. I am not willing to try surgery at this point in my life. One of the top spine surgeons in Montreal told me the only thing that surgery is most consistent at doing is stopping progression - not alleviating pain, especially when the pain is in thoracic spine. Please note, I am just repeating what I was told here, I don't want to start a debate about surgery - if I was confident it would take away my pain without dramatically limiting my mobility or creating other degenerative problems, I would do it in a heartbeat - it has just been communicated to me as a gamble that should be reserved as a last alternative, especially if your curve is stable and your main issue is pain. Things would have to get a lot worse for me to take that gamble.

    One of the surgeons I saw referred me to a physiotherapist in Montreal who has a lot of experience with scoliosis patients (he sends many patients to her to see if she can help them avoid surgery). I saw this physio several times and got some decent advice about safe and unsafe movements (but more so about the posture I should strive for when sitting and standing). She costs $100/hr and prefers to give "treatments" than to help me design a plan with specific exercises that I can do on my own. So as knowledgeable as she is, I find her hard to work with and not really understanding of the fact that I am a student who can't spend $300/week on physio. I have also been to a schroth physio in Ottawa who gave good advice as well about posture and positions for sitting and sleeping in, but I found the exercise component of the session very frustrating because I cannot do the exercises correctly on my own, and I can't drive to Ottawa 3-5 times a week for treatment. Finally, I found a personal trainer who I really like (she is all about balancing muscular asymmetries) and I find her more knowledgeable than several physio's I have seen, but I still have to do more workouts on my own than will her.

    After seeing all of these people (dozens others over the years) I have found some exercises help me (in terms of how I feel -- I am not claiming anything about the overall effectiveness exercises or the schroth approach - I just like the fact that the schroth book warns you about certain movements -- most health care practitioners - including the surgeon I saw - tell me to "stay fit and flexible" without any warnings about what may be counterproductive). Personally, I think (no proof - just based on observations about my discomfort) that some exercises are counterproductive. After developing hunches myself about which exercises are counterproductive (back-bending, twisting, and side bending) I ordered the schroth book and learned that all of these movements are discouraged for scoliosis. I wish I learned this before AND was not so stubborn about refusing to be limited by my scoliosis (i.e. refusing to modify or avoid intense, spine related movements).

    What I still find very discouraging about exercise and physiotherapy is that there is a lot of conflicting information out there and it takes a lot of time, money, and experimenting to finding exercises that are beneficial (by "beneficial" I mean feeling strong/supported and more symmetrical, and reducing pain). I have idiopathic scoliosis, so at one point my spine and muscles were much more symmetrical, now the muscles are far from symmetrical, which I think (as the developers and the spinecor and others suggest), when combined with asymmetrical loading, becomes a vicious cycle (i.e. reduces the postural support provided by your muscles, which means your spine has less assistance in dealing with gravity/asymmetrical loading). Once again, this is a hypothesis, but it makes a lot of sense to me and my goal is to do everything I can to give my spine as much support as I can in dealing with asymmetrical loading in the "hope" that it reduces pain and helps to slow progression.

    I am interested in seeing if anyone in Montreal wants to start an exercise group because:

    i) it seems like the non surgical option for dealing with scoliosis is a never ending process of learning and experimenting - and it sounds like many of you in the same boat as me are out there trying everything you can, so pooling our information and experiences might be beneficial;

    ii) Exercises have to be done pretty regularly (like several times a week) to be effective, yet many of the schroth-inspired exercises for people with scoliosis are hard to do on your own (sometimes all you need is someone to tell you if your shoulders are level, or if a particular movement is enhancing your curve or not). If I still lived in the same city as my family (I moved to Montreal for school), I would recruit them to help me with the exercises, but as an adult on my own in a new city, I am dependent on costly practitioners for everything. I keep thinking there has to be a better way (especially for some of the simple stuff) and I think a work out group (helping each other with basic exercises that we get from a physio) might be that better way for people in the same situation as me. I can even take a carpool of people to the Schroth practitioner in Ottawa for help on starting a exercise group. I am not suggesting starting an exercise group to by-pass physio therapists or trained health professionals altogether (I strongly recommend seeing these people to get your spine assessed (you really need to know what type of curve you have) and advice about movements and exercises), but if there are others like me who have a few simple exercises to do that they need a little help with (even just feedback) to make sure they are performed correctly, perhaps we can form a group to meet a local gym to work on exercises together instead of having to go a physio therapist or a personal trainer for everything, or excising infrequently because it is cost prohibitive. Another alternative is getting a group together to get a group rate from a personal trainer or physio therapist to monitor exercises. In the city I used to live in I saw physiotherapist who would run rehabilitative pilates classes for small groups of people (max 4 people, but usually 2-3 only attended). She charged us $25/session and gave us a physio receipt for our insurance, which made working with her on regular basis doable. I have not been able to find a similar option in Montreal, but perhaps if there is a group of us we can negotiate such an arrangement.

    iii) Finally, I am curious if anyone else in Montreal has the SpineCor Brace and is trying to exercise with it. Although the developers of the brace are from Montreal, I have found very little support for adults who use it (the developers of the brace only deal with children, adults have to get the brace from a chiropractor who wants you to sign up for a very costly treatment regimen with her if she is going to treat you). I got turned off from seeing her when she told me that she was committed to treating me, but would only see me as a patient if I proved that I was committed to my treatment and well-being by signing up for a costly package (like $11,000/year including the SpineCor brace) and gave her my banking information so her clinic can take pre-authorized payments from my account on a monthly basis for this regimen. I ended up buying the brace from her but I just go in for brace adjustments on occasion. I would love to find other SpinceCor users in Montreal who are trying to exercise with it.

    Well that was rather long winded!

    If any of this sounds of interest to you, please let me know!
    Last edited by FiniteJane; 09-04-2011, 01:44 PM.

  • #2
    Bonjour Jane,
    I'm from Québec city, I will undergo surgery in Montreal at the end of the month. So I won't be a member of the group! But I find your suggestion very interesting. Just like you, I tried many ways to reduce my pain in the last years (I finally accept surgery because my curves are progressing and I"m now 70 and 60 degrees). The most interesting (to me) is "antigymnastique" (an approach invented by the french physical therapist Thérèse Bertherat). I have been practicing it for almost 2years now and it's amazing, it helped me with posture and it relieves me. There is a good practitioner in Montreal (she has a scoliosis herself, not an idiopathic one however). It is worth a try. If you want to see what it looks like, there is a good website (just google "antigymnastique"). I'm curious: could you tell me who are the 2 surgeons you have seen in Montreal?
    I wish you find 3-4 fellows scoli friends ready to go for the exercice group, experience has proved me that movement is an important key to managing scoliosis.
    Bamboo

    Diagnosed age 17 in 1975
    no treatment
    Never knew I would need any follow-up
    Now 53 years old
    Curves in late 2010 Lumbar 70, Thoracic 65
    Has been fused T2 to L4 on september 22th 2011
    Dr. Stefan Parent, Hôpital Sacré-Coeur, Montréal

    Comment


    • #3
      Re: exercise group

      Thank you for your reply Bamboo! I will definitely look into antigymnastique!

      I am sorry to hear curve progression has been an issue for you and I hope your surgery goes well. There are enough people who report good results to give those of us facing it a lot hope.

      The two surgeons I saw are: Dr Rivard (one of the developers of the SpineCor) and Dr Jean Ouellet. My visit with Dr Rivard had more to do with the SpineCor (I needed a note from him for my insurance company) - he only operates on children. I got in to see Dr. Ouellet after sending him a sad email about the rapid increase in my pain, an x-ray report that placed my curvature about 10 degrees higher than it had been in the recent past, and how much difficulty I was having getting in to see anyone (other than chiros and physios) about my spine. His secretary called me about a week later and I got in to see him immediately. I have so much respect for that man - he took new x-rays, looked at old ones, and took a lot of time to answer my questions. His measurements were within the margin of error from the figures I have consistently been given over the past 8 years. His advice was to see him again in about 5 years to see if there is any change and to see a particular physiotherapist he sends a lot of patients to (Ginette Caron in NDG). He told me that I could push for surgery if I wanted, but the area that I am having pain in (my ribs in the area of my rib hump) is the least likely to be alleviated by surgery, so the only justification for surgery that I should go by is curve progression.

      Do you mind me asking what surgeon you are seeing?

      Comment


      • #4
        Re-bonjour Jane,
        My surgeon is dr Stefan Parent (hôpital Sacré-Coeur). He is the first I have seen. I wanted to see Dr Ouellet to have a second opinion, but his secretary told me I doesn't take new patients, so I went to Lyon in France and see a top surgeon, dr Pierre Roussouly. He said in everything the same that dr Parent, and that helped me to make the decision to undergo surgery.
        Thanks for the PT's name, it could be useful, the PT knowing well scoliosis are not numerous.
        I recognise myself a lot in your first message, especially when you say that what is hard is that the different methods and approaches to exercise for scoliotic persons often contradict each other, that doesn't help patients... Good luck, and keep coming on this forum and tell us how the group progresses.
        Bamboo

        Diagnosed age 17 in 1975
        no treatment
        Never knew I would need any follow-up
        Now 53 years old
        Curves in late 2010 Lumbar 70, Thoracic 65
        Has been fused T2 to L4 on september 22th 2011
        Dr. Stefan Parent, Hôpital Sacré-Coeur, Montréal

        Comment


        • #5
          Exercise

          Originally posted by FiniteJane View Post
          I am curious if there any people in the Montreal area with scoliosis who want to start an exercise group. Let me explain a bit about myself and why I think an exercise group might be worth trying.

          I have s-curve scoliosis with the largest curve (40 degrees) in the left thoracic spine. I had minimal pain from my scoliosis until my late 20's (I am now 32). Exercise and a hot bath used to alleviate my aches and pains, but I think I may have created too much flexibility in my spine through years of hot yoga, because my spine feels less stable and more susceptible to pain (I can trace the increase in discomfort to when I started doing certain poses in yoga, but the pain could be due to to age or something else as well).

          In April 2010 I got the SpineCor brace (which after a horrible break in period, I find quite helpful in dealing with what feels like muscle pain to me...unfortunately, it does not help much with the stiffness and pressure I feel in my ribs on my convex side). I have also met with two surgeons. I am not willing to try surgery at this point in my life. One of the top spine surgeons in Montreal told me the only thing that surgery is most consistent at doing is stopping progression - not alleviating pain, especially when the pain is in thoracic spine. Please note, I am just repeating what I was told here, I don't want to start a debate about surgery - if I was confident it would take away my pain without dramatically limiting my mobility or creating other degenerative problems, I would do it in a heartbeat - it has just been communicated to me as a gamble that should be reserved as a last alternative, especially if your curve is stable and your main issue is pain. Things would have to get a lot worse for me to take that gamble.

          One of the surgeons I saw referred me to a physiotherapist in Montreal who has a lot of experience with scoliosis patients (he sends many patients to her to see if she can help them avoid surgery). I saw this physio several times and got some decent advice about safe and unsafe movements (but more so about the posture I should strive for when sitting and standing). She costs $100/hr and prefers to give "treatments" than to help me design a plan with specific exercises that I can do on my own. So as knowledgeable as she is, I find her hard to work with and not really understanding of the fact that I am a student who can't spend $300/week on physio. I have also been to a schroth physio in Ottawa who gave good advice as well about posture and positions for sitting and sleeping in, but I found the exercise component of the session very frustrating because I cannot do the exercises correctly on my own, and I can't drive to Ottawa 3-5 times a week for treatment. Finally, I found a personal trainer who I really like (she is all about balancing muscular asymmetries) and I find her more knowledgeable than several physio's I have seen, but I still have to do more workouts on my own than will her.

          After seeing all of these people (dozens others over the years) I have found some exercises help me (in terms of how I feel -- I am not claiming anything about the overall effectiveness exercises or the schroth approach - I just like the fact that the schroth book warns you about certain movements -- most health care practitioners - including the surgeon I saw - tell me to "stay fit and flexible" without any warnings about what may be counterproductive). Personally, I think (no proof - just based on observations about my discomfort) that some exercises are counterproductive. After developing hunches myself about which exercises are counterproductive (back-bending, twisting, and side bending) I ordered the schroth book and learned that all of these movements are discouraged for scoliosis. I wish I learned this before AND was not so stubborn about refusing to be limited by my scoliosis (i.e. refusing to modify or avoid intense, spine related movements).

          What I still find very discouraging about exercise and physiotherapy is that there is a lot of conflicting information out there and it takes a lot of time, money, and experimenting to finding exercises that are beneficial (by "beneficial" I mean feeling strong/supported and more symmetrical, and reducing pain). I have idiopathic scoliosis, so at one point my spine and muscles were much more symmetrical, now the muscles are far from symmetrical, which I think (as the developers and the spinecor and others suggest), when combined with asymmetrical loading, becomes a vicious cycle (i.e. reduces the postural support provided by your muscles, which means your spine has less assistance in dealing with gravity/asymmetrical loading). Once again, this is a hypothesis, but it makes a lot of sense to me and my goal is to do everything I can to give my spine as much support as I can in dealing with asymmetrical loading in the "hope" that it reduces pain and helps to slow progression.

          I am interested in seeing if anyone in Montreal wants to start an exercise group because:

          i) it seems like the non surgical option for dealing with scoliosis is a never ending process of learning and experimenting - and it sounds like many of you in the same boat as me are out there trying everything you can, so pooling our information and experiences might be beneficial;

          ii) Exercises have to be done pretty regularly (like several times a week) to be effective, yet many of the schroth-inspired exercises for people with scoliosis are hard to do on your own (sometimes all you need is someone to tell you if your shoulders are level, or if a particular movement is enhancing your curve or not). If I still lived in the same city as my family (I moved to Montreal for school), I would recruit them to help me with the exercises, but as an adult on my own in a new city, I am dependent on costly practitioners for everything. I keep thinking there has to be a better way (especially for some of the simple stuff) and I think a work out group (helping each other with basic exercises that we get from a physio) might be that better way for people in the same situation as me. I can even take a carpool of people to the Schroth practitioner in Ottawa for help on starting a exercise group. I am not suggesting starting an exercise group to by-pass physio therapists or trained health professionals altogether (I strongly recommend seeing these people to get your spine assessed (you really need to know what type of curve you have) and advice about movements and exercises), but if there are others like me who have a few simple exercises to do that they need a little help with (even just feedback) to make sure they are performed correctly, perhaps we can form a group to meet a local gym to work on exercises together instead of having to go a physio therapist or a personal trainer for everything, or excising infrequently because it is cost prohibitive. Another alternative is getting a group together to get a group rate from a personal trainer or physio therapist to monitor exercises. In the city I used to live in I saw physiotherapist who would run rehabilitative pilates classes for small groups of people (max 4 people, but usually 2-3 only attended). She charged us $25/session and gave us a physio receipt for our insurance, which made working with her on regular basis doable. I have not been able to find a similar option in Montreal, but perhaps if there is a group of us we can negotiate such an arrangement.

          iii) Finally, I am curious if anyone else in Montreal has the SpineCor Brace and is trying to exercise with it. Although the developers of the brace are from Montreal, I have found very little support for adults who use it (the developers of the brace only deal with children, adults have to get the brace from a chiropractor who wants you to sign up for a very costly treatment regimen with her if she is going to treat you). I got turned off from seeing her when she told me that she was committed to treating me, but would only see me as a patient if I proved that I was committed to my treatment and well-being by signing up for a costly package (like $11,000/year including the SpineCor brace) and gave her my banking information so her clinic can take pre-authorized payments from my account on a monthly basis for this regimen. I ended up buying the brace from her but I just go in for brace adjustments on occasion. I would love to find other SpinceCor users in Montreal who are trying to exercise with it.

          Well that was rather long winded!

          If any of this sounds of interest to you, please let me know!

          You can come to Ottawa if you would like to learn the Scoliosis specific Schroth exercises , we have group and individual appointments available .
          Odpcphysio@sympatico.ca

          Comment


          • #6
            Originally posted by FiniteJane View Post

            What I still find very discouraging about exercise and physiotherapy is that there is a lot of conflicting information out there and it takes a lot of time, money, and experimenting to finding exercises that are beneficial (by "beneficial" I mean feeling strong/supported and more symmetrical, and reducing pain).

            i) it seems like the non surgical option for dealing with scoliosis is a never ending process of learning and experimenting - and it sounds like many of you in the same boat as me are out there trying everything you can, so pooling our information and experiences might be beneficial;

            ii) Exercises have to be done pretty regularly (like several times a week) to be effective, yet many of the schroth-inspired exercises for people with scoliosis are hard to do on your own (sometimes all you need is someone to tell you if your shoulders are level, or if a particular movement is enhancing your curve or not).
            Agree. We're on another continent though, but here's an alternative. Video. I do 2 - 3 hours exercising per day with my daughter (T35, L27), including a lot of Schroth. We have improved her curves. Video. A bog standard digital camera on a tripod, while each member of your group explains what they're doing (assistants can explain too), could bridge the miles.
            We'd definitely be interested if it was tightly focused group, etc. PM me if you think this is a way to proceed.
            07/11: (10yrs) T40, L39, pelvic tilt, rotation T15 & L11
            11/11: Chiari 1 & syrinx, T35, L27, pelvis 0
            05/12: (11yrs) stopped brace, assessed T&L 25 - 30...>14lbs , >8 cm
            12/12: < 25 LC & TC, >14 cms, >20 lbs, neuro symptoms abated, but are there
            05/13: (12yrs) <25, >22cms height, puberty a year ago

            Avoid 'faith' in 'experts'. “In consequence of this error many persons pass for normal, and indeed for highly valuable members of society, who are incurably mad...”

            Comment

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