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Thread: spinecor

  1. #2641
    Join Date
    Sep 2005
    Posts
    195
    Jill,

    From your mouth to God's ears!
    Emily's mom-11 1/2 years old
    28 degree scoliosis 9/04
    Chiari Malformation/SM decompressed 11/04
    17-24 degrees 11/04-6/07
    Wearing Spinecor Brace since June 07
    3/31/10- 29 degrees oob
    11/18/09 17 degrees in brace

  2. #2642
    Join Date
    Sep 2007
    Posts
    338
    I've been away for a few days and just read the disheartening news. I know that no words I write here can make it better--I imagine myself in your place one of these days, Cheryl--but please know my heart is with yours. My son's T curve is higher than Rachael's, and the ortho we've been seeing hasn't absolutely suggested surgery yet (He may be thinking that, but he hasn't said it). So I think it's really worth it to see more than one.

    Emily's mom: when you see Dr. Ouellette, ask him about the new shorts that are available to replace the pelvic band on the Spinecor brace. My son has them, but I haven't had a chance to post a photo. They may work as an option to keep the straps at the proper tension and placement.

    I'll try to post a photo soon.

    Mary Ellen

  3. #2643
    Join Date
    Aug 2007
    Location
    Ottawa, Canada
    Posts
    369
    Have your children had supine x-rays (on the back, face up) taken? My children always have their x-rays taken standing up. The only time Esme ever had an x-ray lying down was when she was having an in-brace x-ray in the Charleston night brace.

    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).

  4. #2644
    Join Date
    Sep 2005
    Posts
    195
    I can't believe it but I emailed Dr. Rivard this morning explaining Emily's situation, and he has already responded and asked me to email him photos so that he can advise me of what it is best for me to do now. I am so impressed
    with him already, and I have never even met him. It is truly incredible that he responded so quickly, on the weekend, to someone who isn't even his patient. I see why he gets so much praise around here!!
    Emily's mom-11 1/2 years old
    28 degree scoliosis 9/04
    Chiari Malformation/SM decompressed 11/04
    17-24 degrees 11/04-6/07
    Wearing Spinecor Brace since June 07
    3/31/10- 29 degrees oob
    11/18/09 17 degrees in brace

  5. #2645
    Join Date
    Oct 2007
    Location
    CA
    Posts
    16
    emarismom,

    I stitched the crotch band at the adjustment box where the band goes in and out, so it can not change the length of the crotch band.

    We had three different doctors for the numbers. we started with a surgeon in Children Hospital in Oakland CA which he prescribed a boston brace, due to the rash condition, I found out Spinecor with Dr.Deutchmen, he traveled to SanFransico at that time, as you can see the lumbar from 20 to 28 in one month,than we went for Dr.Rivard i am hoping it goes down on next xray.
    Elaine
    Mother to Jennifer, 11 yrs. Initial curve T38L20 07/30/07
    T31L20 09/24/07 out brace (Boston brace)
    T21L18 09/24/07 in brace (Spinecor)
    T34L28 10/26/07 in brace
    T28L27 11/22/07 out brace
    T23L25 11/22/07 in brace

  6. #2646
    Join Date
    Sep 2005
    Posts
    195
    Dr. Rivard already responded again. He says that "the brace is very well fitted if the curve is a thoracic type 1". I believe it is a type 1, as it is a thoracic curve with an apex of T9. She does also have a compensory cervical curve which was at 12 degrees before, and is now at 14 degrees.

    Elaine, thank you for the idea for the crotch bands. Right now since it seems to be on perfectly, I'm not touching it. I think the whole bottom portion will be washed by hand from now on. I don't ever want to take anything apart again!! Good luck at the next xray. When will it be?
    Emily's mom-11 1/2 years old
    28 degree scoliosis 9/04
    Chiari Malformation/SM decompressed 11/04
    17-24 degrees 11/04-6/07
    Wearing Spinecor Brace since June 07
    3/31/10- 29 degrees oob
    11/18/09 17 degrees in brace

  7. #2647
    Join Date
    Mar 2004
    Posts
    1,138
    Reading your posts that Dr. Rivard responded to you made me cry, I'm obviously an emotional wreck at this point.

    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. #2648
    Join Date
    Aug 2006
    Posts
    369
    emarismom

    I just throw the whole brace in laundry bags and in the washer.I don't take anything apart. I wash once a week. On delicate, cold, no fabric softener. I even put it in the dryer on low heat. We are going on almost 1 1/2 years with the origenal parts. (per Dr. Colliards instruction)
    from CT, USA
    6 year old daughter diagnosed 7/06 33* T9

    Spinecor 8/06 - 8/2012
    8/06 11* 3/07 5*-8/07 8*-2/08 3*
    10/08 1* 4/09 Still holding @ 1*
    10/09 11* OOB 4/10 Negative 6*
    10/2011 Neg.11* IB 11yrs old 0 rotation
    4/2012 12* OOB 0 rotation
    8/2012 18* OOB for 2 weeks. TSLO night time
    2/2013 8* OOB 3 days TSLO nightime
    3/2014 8* Out of Brace permanently

  9. #2649
    Join Date
    Sep 2007
    Posts
    338

    New spinecor shorts

    For those who are interested, here are photos of the new SpineCor brace shorts that replace the pelvic band.

    Mary Ellen

  10. #2650
    Join Date
    May 2007
    Location
    Rugby, UK
    Posts
    269
    Good news at Immy's 6 month review. New out of brace xray 27 or 25 degrees (consultant v orthotist measurement). All looking good. Ribs look more 'normal'. Slight lumber compensatory curve (never measured) has disappeared. Rib hump measurements down to 6 & 0.

    We're over the moon! Although accept that this does not mean that she won't progress to surgery at some point in the future.

    Merry Christmas!!!

    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.

  11. #2651
    Join Date
    May 2005
    Posts
    776
    fantastic Laura; this thread needs some good news!

    gerbo

  12. #2652
    Join Date
    Aug 2007
    Location
    Ottawa, Canada
    Posts
    369
    Great news Laura. I agree with Gerbo - I was feeling a little discouraged but Laura's news helps to restore my hope.

    Mary Ellen: The new Spinecor shorts - is everything attached with velcro? Looks interesting. Is it comfortable? It looks like there is just one strap underneath the groin area - I am wondering if that might be uncomfortable for girls.

    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).

  13. #2653
    Join Date
    Jan 2006
    Posts
    513
    IMPORTANT NOTICE OF BAD ADVICE!!! PLEASE READ!!!!

    I wanted to post, just in case I had passed on to anyone my contraption of tying Rachel's #4 strap to keep it from popping loose, that I think that was the reason her curve went so haywire.
    When she grew a good bit in July and August and her shoulders were really uneven, I kept tying it just as tight. There was no where for her curve to go but sideways.

    I hope I didn't cause anyone else to err.

    When Rachel grew so much in 2006, I would measure her every day. If she started to loose height when 4 was tight, I loosened it just a bit. I also loosened 3 when I loosened 4, to keep things even.
    I forgot about it during the past few months.

    If the brace had been allowed to function as normal, that 4 strap never would have stayed snapped. You can only force a curve so far for correction without adverse effect.

    I should have taken her in October when I saw her growth. That was my other error.

    If you have a good bit of growth, you should go back sooner.

    Maybe this will save someone else from making the same mistakes.

    Since no one else ties their brace, it probably wouldn't happen.

    But it is a possible senario with the new shorts. That velcro is going to hold like that shoestring. If you force that strap to be too tight, I think there will be an adverse effect.

    I am 99.9% sure that I have identified the error. You should have seen how tight I had that strap.

    I eventually will let myself move forward, but right now regret is eating my lunch.
    Last edited by cherylplinder; 12-10-2007 at 10:40 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.

  14. #2654
    Join Date
    May 2005
    Posts
    776
    oh Cheryl, do not beat yourself up. we all have our own theories of what might work and what might not work, things we should try and things we could do different. The one message I have got from reading and contributing to this forum is that there just isn't that sure way of preventing the progression of soliosis if it is going to happen. we all do it, searching, looking, considering, re considering, re-re considering till we're blue in the face, discussing the pro's and cons of our chosen methods, fighting to defend our methods, but in the end, que sera, sera, the professionals cannot agree on what should be done or not, brace or not brace, exercise or not, how can you, however hard you try, be expected to "know" what is going to make the difference???

    I so feel what you are feeling as so often I have so similar thoughts and feelings; "if only i'd do this, or if only......."

  15. #2655
    Join Date
    May 2007
    Location
    Rugby, UK
    Posts
    269
    Cheryl, Please don't be hard on yourself. You have done the very best you can for Rachel. As parents we're always looking for ways to shoulder the blame... IT IS NOT YOUR FAULT THAT RACHEL HAS SCOLIOSIS. YOU ARE A FANTASTIC PARENT.

    What do the doctors think of your theory? If you are right and the curve has grown because of your adjustment can the progression be reversed over the next few months??

    Thinking of you,

    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.

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