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Thread: spinecor

  1. #2746
    Join Date
    Nov 2007
    Location
    Houston, TX
    Posts
    1,757
    Bracegal ... I won't even ask "Where's your Mother - and why isn't she filling you in on YOUR body?" ...

    But this IS your body. Find out the details. Do your research.

    Ask your ortho ... take notes. You may not understand it all, but you have a place to have it explained (here).

    Hugs, Chica. Take control.

    Pam
    Fusion is NOT the end of the world.
    AIDS Walk Houston 2008 5K @ 33 days post op!


    41, dx'd JIS & Boston braced @ 10
    Pre-op 53, Post-op < 20
    Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


    VIEW MY X-RAYS
    EMAIL ME

  2. #2747
    Join Date
    Jan 2008
    Posts
    20
    I know heaps about my back and stuff ive just never asked the drs about the curves!
    They really havent told me either

    Tayla
    HI! I'm Tayla
    I Wore A Boston Brace For 5Years!
    It Was Taken Off May 10.
    But... After a Review in Nov 10 My Back had got badd!!
    Im Now On The Waiting List For Surgery To Get The Bottom Curve Fused.
    pre surgery:
    51 at the top.
    49 at the bottom

    <3 Tayy
    S COLIOSIS
    Makes Us Stronger... <3

  3. #2748
    Join Date
    Nov 2007
    Location
    Houston, TX
    Posts
    1,757
    Quote Originally Posted by BraceGal
    I know heaps about my back and stuff ive just never asked the drs about the curves!
    They really havent told me either

    Tayla
    Tayla, you *don't* know "heaps" if you don't know your curves, their degree and severity.

    That is the FIRST thing you should know.
    Fusion is NOT the end of the world.
    AIDS Walk Houston 2008 5K @ 33 days post op!


    41, dx'd JIS & Boston braced @ 10
    Pre-op 53, Post-op < 20
    Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


    VIEW MY X-RAYS
    EMAIL ME

  4. #2749
    Join Date
    Jan 2006
    Posts
    513
    TX,

    Lighten up a little. She's a kid. Some adults don't know. The way you phrased it was kinda harsh.
    She said she was going to ask.

    HUGS!
    Cheryl
    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.

  5. #2750
    Join Date
    Aug 2007
    Posts
    388
    Sarah, I hope all goes well with the appointment today!

    Bracegal, The theory is that spinecor works better on "milder" curves which is why it would be helpful for you to know the size of your curves. From what you posted, it sounds like they were minor when you were first diagnosed...hopefully they haven't gotten larger since then. I don't know if the other medical issues you referred to would keep you from being a good spinecor candidate but as others have mentioned, you (or one of your parents) could always contact Dr. Rivard in Montreal to get his take on it. Good luck!
    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. #2751
    Join Date
    Nov 2007
    Location
    Houston, TX
    Posts
    1,757
    Didn't mean to sound harsh, I just find it odd to be braced for 2 years and not know your measurements.
    Fusion is NOT the end of the world.
    AIDS Walk Houston 2008 5K @ 33 days post op!


    41, dx'd JIS & Boston braced @ 10
    Pre-op 53, Post-op < 20
    Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


    VIEW MY X-RAYS
    EMAIL ME

  7. #2752
    Join Date
    May 2005
    Posts
    776
    Considering I started this thread, I might as well put you in the picture about our current situation. In line with what happened with melisaa's and cheryyl's daughter, we haven't been doing well at all recently, we had our latest check last wednesday and as feared; not good at all, primary curve; about 31, sec curve at T4 39 degrees, no difference in or out of brace, so she has been taken out of it. Mr Cole (orthopaedic surgeon) doesn't think a hardbrace is likely to make any difference (specially as T4 is hard to brace anyway) and is preparing us for surgery (at 50 degrees) which seems inevitable, and about which he seems very relaxed.

    mixed feelings plenty; just upset, failing and even guild as I fear that some of the steps we took (even the spinecor) might have contributed to deterioration (specially of the top curve)

    not sure what to do next, if anything. Don't think L and her mum can stomach thinking about taking the hardbrace route as no garantee it will work and emotionally so difficult, she surely is currently happy as anything not wearing a brace and interestingly even previously occuring nightmares seem to have disappeared. Prospect of surgery is too far of to bother her now

    Not sure yet what will be more harmful; accepting she is happy now and accepting she will have surgery eventually, or by "encouraging" hardbracing with no garantee of succes, but the garantee of a further couple of years of emotional and physical hardship

    tough one to work out....
    Last edited by gerbo; 03-24-2012 at 05:32 AM.

  8. #2753
    Join Date
    Sep 2005
    Posts
    195
    Gerbo,

    I am so very sorry to hear that Lisanna is progressing. At this moment I truly do feel your pain, as with what has been happening of late, I think many of us are beginning to think of the "what ifs" of surgery in the future.

    Please remind me of where Lisanna was at last check up and how old she is now.

    With Emily's bad news recently, I have been thinking alot about what I will do if I am faced with the fact that she has begun to progress. I have come to the conclusion, that I will not bother with a hard brace. It is almost like adding insult to injury in my mind. If the spinecor does not work, which may be the case with Emily, I will let her progress until surgery. It is not my call, but I do believe that Lisanna should be happy. I know that the prospect of surgery is scary, I have been there, and may one day be there again. But the truth be told, these young children bounce back so well. Emily dealt with her surgery, and forgot about it. It is me, who is still reliving it.

    I haven't posted this yet, but I did visit Dr. Brian in Atlanta over the holidays. He refitted Emily's brace again. I have made an appointment with him again in late March.
    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

  9. #2754
    Join Date
    May 2007
    Location
    Rugby, UK
    Posts
    269
    So sorry to hear your news Gerbo....

    It's so hard for us parents to know what to do. I really don't think right & wrong come into it. We all do the best we can & still end up feeling guilty - that's what being a parent is all about

    Is Mr Cole positive it will progress? Lisanna is nearly 14, if she is nearly fully grown perhaps it won't get any worse now? Maybe not wearing the brace will stop the secondary curve from progressing?

    If surgery does become necessary will Lisanna only need a small portion of her spine fused? I imagine that fusion of the thoracic area will have less impact on flexibilty than lumber???

    Sending you & your family love & support. Thank you for all you've done for us. I can't imagine how awful Immy's life would be now in a hard brace. I don't expect the outcome to be any different using Spinecor but I know that it makes this time so much easier to bear.

    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.

  10. #2755
    Join Date
    May 2005
    Posts
    776
    thank you Renee, emarismum and Laura; every bit helps

  11. #2756
    Join Date
    Jan 2006
    Posts
    513
    Hey my friend,

    I just wanted to post Dr. Sanders opinion again.
    Lisanna and Rachel had very similar profiles. Rachel's curve was 33 to 38. Dr. Sanders measured her at 33 in April of 2006. So did Dr. Conklin in December of 2005. The 38 was in Montreal in Jan of 2006, between the two 33 degree measurements. I was never sure whether the 38 was within the margin of error or if there had been progression and then correction.
    He told me in April of 2006 that nothing would hold Rachel's curve, given her risser age and degree of curvature. He felt Spinecor would hold her as well as anything.
    He refused to cast her. He didn't say lose that extra 10 pounds and I'll cast her, which I think he would have done had he thought it would help. He just didn't want to cast her.
    He didn't think any other brace would be more effective.

    Let go of the guilt, my friend. You helped me let go of mine.
    You are such a great dad! Lisanna could no have had a better advocate. We have all done our best!
    You have said before that many have travelled the road to surgery successfully. Lisanna will also, if that is the only choice. Her life is going to be great! I know it!
    If she is anywhere near as wonderful as you are, and she is YOUR daughter, she will make her way fabulously! Her trials will only serve to add to her strength and compassion.
    I love you! I will be praying for you all!

    BIG HUGS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
    Cheryl
    Last edited by cherylplinder; 01-14-2008 at 10:37 PM.
    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.

  12. #2757
    Join Date
    Sep 2005
    Posts
    877
    Gerbo,

    You know how I feel. I am sharing all the emotions you have as I can relate to them. Being helpless to do anything is the worst part of this scoliosis. When you have the progressive type it is so far out of our control. I am so glad to see that Lisanna is coping with this so well and no longer having nightmares. You have my support throughout all of this. You are not alone. You are a wonderful Dad.

    Cheryl,

    Your post brought tears to my eyes. And I am sorry I don't remember who said this, but it is true, Nicole is going on with her life and I am the one who is harping on the cruelty of it all. I am the one having a difficult time letting go of it.

    We really are all on this journey together. We are all in different stages. But thankfully we all have one another to lean on.
    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

  13. #2758
    Join Date
    Aug 2007
    Location
    Ottawa, Canada
    Posts
    369
    Gerbo:

    So very sorry to hear Lisanna's curves have progressed. There is still a chance that her curves won't get any worse given her age. Do you know her Risser?

    Were the in-brace and out of brace x-rays taken a couple of days apart? Dr. Rivard told us that you have to be out of the brace for at least 24 hours before the out of brace x-rays will show the actual real curves. Just wondering.

    Have you tried the SI (Rolfing) and yoga?

    Ruth
    Last edited by rtremb; 01-15-2008 at 01:22 AM.
    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).

  14. #2759
    Join Date
    Nov 2005
    Location
    SPAIN
    Posts
    64
    Gerbo, so sorry to hear about your latest news. I use to come to this thread to see how all you are doing with the spinecor; I feel I know you, after years of reading your post.... We had a similar appointment nearly two years ago, when my daughter was still wearing the spinecor. As Cheryl has pointed out before, when one treatment falls, its time to start another one, and if surgery is in the future, we have read lots of successful stories in this and other forums.

    I wish you the best
    Hugs!
    2004: Daughter diagnosed at 13 L38. Risser 0.
    Treatment: Cheneau brace
    2009: Brace free, 18 years old, Risser 5, L25

  15. #2760
    Join Date
    Jan 2006
    Posts
    513
    Sarah,
    I hope all went well at your appointment.
    Cheryl
    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.

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