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Thread: spinecor

  1. #2671
    Join Date
    Aug 2007
    Posts
    388
    Laura, that's great news about Immy!!!!! Yay! How long was she out of brace before they took those Xrays?

    Emily's Mom, Like you I was told to wait for progression and haven't done so either. We'll never know the definitive "What if" answers (i.e. if we had taken an alternate course) which is so maddening about scoliosis. However, I'm inclined to think that if she progressed so quickly in spinecor (even if it wasn't positioned properly which might have contributed to it) that she probably would have progressed anyway??? I'm thinking maybe its evidence that its a good thing you didn't wait? I forget who suggested it, but maybe if you go back even sooner than they suggested it would give you some more information to work with - like maybe a month or two?

    I don't take the brace apart to wash it either...I through the whole thing in the machine on delicate/cold cycle and use a dryer on low heat; if I understood Dr. Colliard correctly, the pelvic base is made out of something different than it originally was which is why you can put it in the dryer even though the manual (which was printed earlier) says not to?
    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

  2. #2672
    Join Date
    Sep 2007
    Posts
    338
    Allegra--

    Just so you know, the doc said some kids fold up the very bottom of the shorts and even fold down the waistband--he said that's okay. So that would make them shorter. I think Sidney folds up the very bottom band, but I unfolded them so the photo would show all of them.

    Celia--

    I had no idea the SpineCor manual was online. I downloaded it--thanks for posting it.

    And Jill, I'm with you. I have real fears that I don't have the brainpower to keep up with all that's going on with scoliosis and now I'm wondering if I haven't been neglecting the brace itself! I just let Sidney put it on the way he learned to and I haven't been checking the tightness of the bands....

    Mary Ellen

  3. #2673
    Join Date
    May 2007
    Location
    Rugby, UK
    Posts
    269
    Jill,

    I think the fact that the xray was out of brace is a bit of a red herring as she was only out for 5 mins! Mr Mills said that an in brace would show very little difference as her spine had not had enough time to go where it wanted to. He did offer an in brace if we wanted but felt it was not necessary. We were so pleased with the out of brace that we were happy to stick with that! Plan is to have three monthly adjustments, six monthly in brace xrays and annual out of brace.

    We are delighted with the progress but I am aware that many people have seen similar improvement followed by rapid progression in later years. We must remain realistic, although there is certainly more reason for a little cautious optimism.

    Laura x
    UK based Mum of Imogen, 38 degree curve at 9 years old. SpineCor since 15/6/07, 31 degrees in brace.
    10th December 07 - 27 degrees, 23rd June 08 - 26 degrees, Feb 09 - 24 degrees, Aug 09 - 35 degrees, Jul 10 - 47 degrees, Dec 10 - 50+ degrees.
    Surgery due to take place early December 2011 at the RNOH, England.

  4. #2674
    Join Date
    Mar 2004
    Posts
    1,138
    Quote Originally Posted by jillw
    Celia, when you refer to corrective movement, do you manually move your daughter's spine in a certain way before putting on the brace? that's what the manual looks like but in MOntreal they never told me to do any "movements", I just attach the straps as they told me to. Am I missing something important here?

    Also when you talk about the shoulder tilt you mentioned one shoulder being pushed up - Katie has a bit of a shoulder tilt in brace, but its more because her left shoulder (opposite side of her right thoracic curve ) is pulled DOWN by the #4 - that compression does concern me.

    So you have had the tension adjusted on Celia's brace since your concerns about her high thoracic/cervical curve? I recall you mentioning recently that it looked to be gone - was it because of an adjustment?
    Jill,

    I put the brace on exactly the same way you do however I'm careful not to tilt the right shoulder and keep both shoulders level given my daughter's curve classification which according to the spinecor manual is a detorsion of the right shoulder and the thorax which involves the right shoulder sticking out in front of the left but still at the same level and a gentle twisting of the thorax towards the right. It's a very slight adjustment to the tension of the bands. Make sure you know what the brace is intended to do for your daughter's curve classification.

    Keep in mind she has remained straight for two years with a 2 degree curve but the muscular area on the right side of the neck is gone and visually her spine looks completely straight to me. She doesn't complain of neck pain any more.
    Last edited by Celia; 12-11-2007 at 10:53 AM.

    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

  5. #2675
    Join Date
    Aug 2007
    Posts
    388
    Laura, that's still great news as it still represents an improvement!

    Celia, is her Thoracic curve to the right? When you say the detorsion means her "the right shoulder sticking out in front of the left " do you mean that if I was standing in FRONT of her her right shoulder would be protruding forward a bit? Or do you mean if I was standing BEHIND her, that her right shoulder would be pulled back a little more (i.e. be sticking out compared to the left but sticking out behind)?

    I've got to call Dr. Rivard and find out how they have classified Katie's curve...its right thoracic with an apex of T8/t9 and a left compensatory thoracic curve although I don't know the location of that...

    Thanks
    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

  6. #2676
    Join Date
    Jan 2006
    Posts
    513
    Laura,
    I am so happy for you! Sorry I didn't say sooner. I have been in a shell and not really reading, just posting!
    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.

  7. #2677
    Join Date
    Jan 2006
    Posts
    513
    I hope it is some comfort to all of you that I can identify something that we did radically different than what we had been doing before that led to such a rapid progression.
    I know it's most often not anything one can identify. However, I can clearly see the biomechanics of my mistake now.
    I am beginning to come to terms with my serious lapse of judgement that led to this.
    For one thing, every time I have had a huge crisis in my life, God has managed to bring so much good from it, that, if I could go back and never go through it, I wouldn't.
    He heals us better than we were before we were hurt. The bigger the crisis the more good He brings. It amazes me how He does that.
    The scripture is Romans 8:28-30.
    "All things work together for good to those that are called according to His purposes."
    He has done it too many times in my life for me to doubt HIs ability to do so now.
    This was a big hurt with huge consequences. He will bring a really big blessing. Ugh!!!!!!!!!!! It's not always the way I choose.
    He loves to bless me. LOL, sometimes I wish He wouldn't at first. It's usually only in the aftermath that I am grateful to be blessed with a trial.
    I see His hand in everything I have gone through. What others mean for evil, He uses for good. The hardships of this life, He uses for good.
    I do feel blessed.
    I know He will even use my serious lack of judgement that led to harm for my child as a blessing to us both. Even my mistake can not circumvent His ultimate goodness.

    Thank you all for your support and encouragement. I don't know how I would have made it through the past few days without it. You are one of the blessings of scoliosis. If anyone wants to PM addresses and such, I would like to have them. You are an extended family to me and I love you.
    My e-mail is cherylplinder@hotmail.com . You can e-mail me information if you want. My mailbox gets a lot of use and sometimes it fills up.

    Love and Hugs to All
    Last edited by cherylplinder; 12-12-2007 at 09:19 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. #2678
    Join Date
    Mar 2004
    Posts
    1,138
    Cheryl,

    What an emotional rollercoaster this is! We all love you and know how strong you are.


    Jill,

    Deirdre has a left thoracic curve with the apex at T8-T9. Before going into the spinecor brace she had a very slight compensatory lumbar curve going to the right but if you look at her x-rays that has completely disappeared. The thing that was causing me a lot of stress was the upper thoracic curve that came out of nowhere and at first seemed benign and postural (obviously it was) but appeared in the latest x-ray to be a threat. As of today, if you stand behind her, the right shoulder is slightly in front of the left but height wise they are level which is *exactly* what the picture in the Spinecor manual shows and there is also a twisting of the thorax to the right to correct her left thoracic curve. According to the Spinecor manual, a shoulder tilt is prescribed for *very* high thoracic curves so this would explain why she was developing the curve high up. It's important for parents to know what the curve classification for their child is and the principal corrective movement for that curve type because I was tightening the #4 strap thinking this was keeping her thoracic curve in check but in fact it was causing a secondary curve to develop which in time would take the lower curve with it as the spine tried to stay balanced....hence starting a vicious cycle. The latest x-ray is the one with the arrow above the right shoulder.

    http://i41.photobucket.com/albums/e2.../Deirdre10.gif
    Last edited by Celia; 12-12-2007 at 01:02 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

  9. #2679
    Join Date
    May 2005
    Posts
    776
    I hope it is some comfort to all of you that I can identify something that we did radically different than what we had been doing before that led to such a rapid progression.
    sorry cheryl, I have to strongly disagree with you on this one. You are now blaming yourself for the curves progression. You SHOULD NOT!! It is only your theory that the tension in the various bands caused the curve to get worse. I think it is more likely that the curve got worse, because that is what they tend to do!! Full stop!! I think it is very dangerous if and when individual parents, (for understandable reasons) think they can do better than the advice and guidance given by their clinician. If we are not careful , we will be getting, next to the officialmanual, "the spinecor manual according to cheryl" and the "manual acc to celia" and I am sure I could come up with a "manual acc to gerbo"

    I am only saying this as I feel that you are beating yourself up totally unneccessary!!

  10. #2680
    Join Date
    Mar 2004
    Posts
    1,138
    Quote Originally Posted by gerbo
    ... next to the officialmanual, "the spinecor manual according to cheryl" and the "manual acc to celia" and I am sure I could come up with a "manual acc to gerb"

    Oi I can't speak for Cheryl but I'm sure she has some valid points and can offer newbies some valuable advice as to the do's and don'ts. She told us she was making adjustments to the brace on her own and so was I. Do you think I erred in Deirdre's case or the advice given to parents to make sure they know their child's curve classification and the corrective movement for that curve type? If parents follow the Spinecor Manual and instructions given by their doctors and the curve progresses then....yes it's beyond their control at that point. If you look at the literature some curves have completely resolved with the Spinecor so shouldn't we try to understand.... WHY????
    Last edited by Celia; 12-13-2007 at 03:26 AM.

    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

  11. #2681
    Join Date
    May 2007
    Location
    Rugby, UK
    Posts
    269
    Cheryl, I'm with Gerbo on this one. Rachel's progression is following a very similar pattern to many others. Around 12 years old seems to be the most dangerous time for girls with Juvenile Scoliosis (ie first diagnosed when under 10). I'm sure Melissa will agree that Nicole's progression was not her fault, just as Rachel's is not yours. This would have happened anyway. There was some progression in the early part of this year, which certainly indicated that more was to come. We're all doing the best we can to deal with this insidious condition, please don't blame yourself.

    Have you spoken with your doctors? Do they have an opinion on this?

    You are blessed to have such strong faith to help you through difficult times.

    with tough love,
    Laura
    UK based Mum of Imogen, 38 degree curve at 9 years old. SpineCor since 15/6/07, 31 degrees in brace.
    10th December 07 - 27 degrees, 23rd June 08 - 26 degrees, Feb 09 - 24 degrees, Aug 09 - 35 degrees, Jul 10 - 47 degrees, Dec 10 - 50+ degrees.
    Surgery due to take place early December 2011 at the RNOH, England.

  12. #2682
    Join Date
    May 2007
    Location
    Rugby, UK
    Posts
    269
    Celia, Where's your Canadian eh gone??
    UK based Mum of Imogen, 38 degree curve at 9 years old. SpineCor since 15/6/07, 31 degrees in brace.
    10th December 07 - 27 degrees, 23rd June 08 - 26 degrees, Feb 09 - 24 degrees, Aug 09 - 35 degrees, Jul 10 - 47 degrees, Dec 10 - 50+ degrees.
    Surgery due to take place early December 2011 at the RNOH, England.

  13. #2683
    Join Date
    Mar 2004
    Posts
    1,138
    Did you like it? I can add it back on

    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

  14. #2684
    Join Date
    Sep 2005
    Posts
    877
    Cheryl.

    When Nicole and Rachel were diagnosed they were both told that they would eventually need surgery. Why? Because statistically at their age and with their risser and their large curve, they would need surgery. There is no mystery here. Possibly we gave our daughters some extra time with the Spinecor. You thought you would beat those odds. I thought we would, too. Nicole had an amazing initial correction. Better than many. She also had some really great appts. where her curve decreased. But we all know what happened in the end. We never tampered with the brace. Nicole wore it religiously and perfectly. She even did her ballet in it (along with jazz, tap, and every other physical movement). We even made a DVD for Dr. Rivard of Nicole dancing in her brace. We would have dedicated our lives to the Spinecor and spread the word of its success. That is how devoted and dedicated we were to it.

    Nicole and Rachel progressed because they have the type of curves that even Spinecor can't stop. Every top orthopedic in Phila that we saw told us that. But they also respected and supported our decision to try something to avoid surgery.

    It was always out of your control and our control.

    I hope you can find something else to avoid surgery for Rachel.

    But if you can't. We will be here to support you every step of the way.

    Once you get through it, you really do wonder why you carried on as if the sky was going to come down if you had to do the surgery.

    I pray for you that you can let go of this guilt that absolutely does not belong to you. Please let go of it. You did not cause the curve to increase. You do not have that kind of power. Give this all up to God and continue on your journey.

    Big hugs and prayers to you for peace in your heart.

    Love,

    Melissa
    Melissa
    From Bucks County, Pa., USA

    Mom to Matthew,19, Jessica, 17, and Nicole, 14
    Nicole had surgery with Dr. Dormans on 9/12/07 at Children's Hospital of Phila. She is fused T-2 - L-3

  15. #2685
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,805
    Cheryl,

    I don't know much about Spinecor, but I must agree with Melissa and everyone else that your daughter's progression is NOT because of anything you did or did not do.

    I remember when David wore a brace, I would panic if the doctor said that a strap had to be adjusted or that something needed to be tightened because she thought it was not fitting properly. But she told me that, over a couple of months, something like that would NOT affect the ultimate outcome. Braces, by their nature, very often need adjusting and fixing. Kids grow, their bodies change - it would be unreasonable to expect them to fit perfectly ALL the time.

    I am not saying that a good fit is not important and it is certainly what everyone should try to achieve. But what you did or did not do with the brace is NOT what caused Rachel's curve to increase.

    Please do not blame yourself. If we were able to control our kids' curves, they would all be at 0 and none of us would be on here
    Last edited by mariaf; 12-13-2007 at 05:56 AM.
    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/

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