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Thread: spinecor

  1. #1936
    Join Date
    Mar 2004
    Posts
    1,138
    I know a little about casting and the EDF casts are *very* nonrestrictive with *enormous* cutouts in the front to allow for rib cage expansion and cutouts in the back to allow for ribcage molding. Surprisingly range of movement is not a problem as one would think! Only an expert doctor would know how much time is necessary in these casts given that Lisanna's curve is still manageable and under 30 degrees - I wouldn't go and say that it's two years!!! If Gerbo should decide to follow this route - try to go to the hospital in France where dr. Cotrel practiced as I'm sure they wouldn't give you a hard time with this decision. I recall reading that the very beautiful Renee Russo wore casts as a teenager for her scoliosis and avoided surgery. I don't think one can even tell she has a deformity. Here is a picture of her back.... She doesn't look in the least bit psychologically traumatized


    http://i41.photobucket.com/albums/e2...-picture-1.jpg
    Last edited by Celia; 07-14-2007 at 11:37 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

  2. #1937
    Join Date
    Sep 2005
    Posts
    877
    Nobody has ever offered a cast to us. Is it not done at all for older kids in the United States? I would choose that if it were short-term and if it had a good chance of avoiding spinal fusion. I believe the hard braces were custom made in the past more than they are now. Remember the book Deenie. It was fiction, but that was how the braces were made then and they were probably more effective than they are now.
    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

  3. #1938
    Join Date
    Jan 2006
    Posts
    513
    I know my thinking is different than most. I considered casting from the start. I see every difficulty I have ever been through as something that strengthened me.

    But, I think surgery is radical.

    I am under the impression that because they can do some traction and derotation on the Risser-Cotrell frames(don't know if I have the apparatus named correctly in this post), that better correction can be achieved. They can also make a cast that goes over the shoulder to give added correction to a thoracic curve, if I am not mistaken. I would think they could use the same techniques they use for infantile, even traction for a period of time to allow for more correction. I know teens would hate it, but I have heard of more than one report(albeit second hand) where true correction was achieved with casting in adolescents. It seems it might be at least presented as an option. I tried to find articles last year on this, but was unsuccessful. I probably was not using the right avenue for research.
    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.

  4. #1939
    Join Date
    Mar 2004
    Location
    Maine
    Posts
    28

    casting

    I'm not very good at posting, but thought I should add something here. My daughter had a cast from September of last year until April. Her curve prior to the cast was in the 40's. In the cast it came down to the 20's. She has been back in the spinecor since April and her curve in brace at that time was 33. She is 9. She tolerated the cast very well, but was relieved to be back in the spinecor now. She continued to take jazz class, but did not continue with ballet. She even rode her horse with the cast.

    My daughter has had scoliosis since she was an infant and wore a hard brace for 5 years. This was the first time casting had ever been mentioned. She may go back in a cast again this fall.

    Ann Rairdon
    Mother to 14 year old daughter
    Diagnosed with infantile scoliosis at 6 months (54 degree left thoracic)
    Boston Brace for 5 years.
    Montreal to see Dr. Rivard and Dr. Coillard 7/04 to 1/08(spinecor brace and 3 casts)
    surgery with Dr. Clements Oct. 2008 (8 staples and a hybrid rod)
    3 lengthenings with Dr. Samdani
    Scheduled for fusion with Dr. Samdani

  5. #1940
    Join Date
    Mar 2004
    Posts
    1,138
    Yes! Dr. Rivard cast Ann's daughter even though she had been in the Spinecor brace for quite some time and obviously saw the curve progressing. He told me in the very beginning that if Deirdre's curve progressed that he wouldn't hesitate to put her in a cast.

    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

  6. #1941
    Join Date
    Sep 2005
    Posts
    877
    Of course, it is ridiculous for me to live in the past. But I am wondering why nobody ever suggested casting for Nicole. I am hoping that if it were an option that Dr. Rivard would have suggested it. I wonder if it is for kids who have a lot of growth left, not just 5 inches as was the case with Nicole. When we saw Dr. Rivard, Nicole had just had her period.

    When Nicole was diagnosed at age 11 1/2 she had a 40 degree curve and was about 5 feet tall. Now 2 years later she has two curves around the 50 degree mark and is 5'5 1/2" Don't know why I am rambling on like this. I guess I am just saying she never had a huge amount of growth after diagnosis because she got her period 8 months later.
    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

  7. #1942
    Join Date
    Jan 2006
    Posts
    513
    Melissa,

    I, for sure, don't know. Dr. Sanders ruled out casting for Rachel in April of 2006 because she is a chunky kid. I don't know if he would have said something different if she had been skinny. At that time I didn't know if anything would work. He said nothing would, but he didn't have the option of a skinny kid... She had probably 9 or 10 inches of growth left at that time. She has grown 4 inches this year. I am thrilled to have had correction in the Spinecor. I hope that encourages someone. I guess it doesn't have to be a cast. On the other hand, if the Spinecor does not address your child, I would not rule casting out, if I could find someone that could offer that option with some success or a possibility of it...
    Rachel is still chunky. I planned to make diet and exercise a priority this year and leave the option open for casting. I didn't achieve that. My mom has been really ill and I spent at least 6 or 8 months out of the last year helping them, I have a crazy house that we are adding to and remodeling, William has diabetes, we home schoool, I can't get all my ducks lined up. Nonetheless, God is good to me to have had the results we have had this year. If this next check up brings bad news, I am still grateful. Not that I won't be devastated. Avoiding surgery was as important to me as it is to any parent. I just don't know what I face next week and am always prepared for the worst. This is a crazy disease that as long as it has been around, has few parameters that can be measured to determine progression.

    Hugs,

    Cheryl
    Last edited by cherylplinder; 07-14-2007 at 06:35 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.

  8. #1943
    Join Date
    Sep 2005
    Posts
    877
    Cheryl,

    I want the best for Rachel. I hope, as you do, that this is a good appt. I wish you all the best.
    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

  9. #1944
    Join Date
    Sep 2003
    Location
    NJ
    Posts
    1,293

    casting... my personal experience

    I usually have no business on this thread but I will add my experience as a "castee".

    My original treatment in 1956/57 involved a series of casts with a turnbuckle/hinge apparatus attached to gradually straighten me. This cast encased part of my head down to one knee and the other hip. Every day my doctor would turn the thing gradually stretching my spine.

    Once the maximum amount of correction was obtained a limited spinal fusion was performed through a hole in the back of the cast. NO HARDWARE was ever used those days. Six months after the fusion I was placed in a smaller cast and 4 months after that a "walking" cast. I was totally bedridden that whole year and had to learn to walk again. One would think all that casting would really do it... plus the fusion yet. The correction was disappointing and I still had a significant rib hump. And surgery those days was far more dangerous than now.

    My age 59 I had ended up with curves of C30/T80/L40 needing a revision.

    The cast was very hot and smelly. My mom had to change the stockinette frequently but the plaster really smelled. The plaster now is probably better.

    Casting may immobilize very well but in my case my spine was marching to its own drummer.

    In my case the decision, those days, to intervene was based on skeletal maturity looking at the iliac crests for a ridge. Supposidly the curves would have stopped so that the unfused portion would not curve(it did).

    Despite all that I've lived a relatively painfree(until my 50s), productive life becoming a registered nurse and later nurse-anesthetist.

    My children (adopted) did not develop scoliosis but If I had a child facing progressive curves despite a reasonable try at bracing I would not wait for it to get worse but would not hesitate to go the surgical route---finding the best surgeon/facilities around-- from what I have seen and experienced.
    Last edited by Karen Ocker; 07-15-2007 at 01:35 PM.
    Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
    Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

  10. #1945
    Join Date
    Sep 2003
    Location
    NJ
    Posts
    1,293

    spincore, bracing and casting studies

    Last edited by Karen Ocker; 07-15-2007 at 02:28 PM.
    Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
    Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

  11. #1946
    Join Date
    Jul 2007
    Posts
    14
    Gerbo - I am fairly new at the beginning of my journey with my daughter and don't have any practical advice to give, but please know you are in my thoughts. Your daughter is so lucky to have such concerned parents doing their very best for her. As you have been so kind and supportive to everyone, I thought it important to let you know you are in our prayers.
    Amy
    Mother to Olivia age 12. Diagnosed with idiopathic scoliosis November 2006. Currently measured at 24/25 out of brace, 16/18 in brace. Is being treated by Dr. Rivard and Dr. Colliard in Montreal. Has been in Spincecor since 8/15/07. We live in rural upstate NY - thankfully quite close to Montreal.

  12. #1947
    Join Date
    Jan 2006
    Posts
    513
    Karen,
    Thank you for the abstracts and your input. I know I speak for all of us when I say that I am grateful that sugery is an option when bracing fails. What a relief to know that excellent treatment is available no matter which way it goes.
    I really appreciate all of you and your support. I know I say it pretty frequently, but frequently I feel a tearful joy at your presence, concern, and support! This would all be really hard without you. You make me feel blessed.
    Hugs to all!
    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.

  13. #1948
    Join Date
    Sep 2005
    Posts
    877
    Karen,

    I am also very appreciative of your posts. Thanks so much for sharing. In my wildest dreams I never thought I could ever accept Nicole having a spinal fusion. But here I am, with little choice but to accept it. Thank God these surgeries have come a long way and I see many examples of happy and healthy teens who have come through with flying colors. Do I wish Nicole didn't have to go through this. Obviously, yes. But I have to believe that everything will end up being okay. Thank you to all of you who have helped me every day so that my husband and I don't feel so alone. You give me strength and then I am strong for him when he needs my strength. You are all a blessing.
    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

  14. #1949
    Join Date
    Sep 2005
    Posts
    195
    Gerbo,

    My thoughts and prayers are with you as you continue to look for the
    best treatment for your daughter.

    We are all very lucky to have surgery as a final option should it ever come to
    that. At least we know that should all our efforts fail, surgery will be able to
    provide these children with a good quality of life. Of course, God willing, some of us may be able to avoid it, and if we can't, as least we as parents can HONESTLY say we tried everything.

    Emily's first follow up is this Friday, my nerves are now beginning to peak.
    At least there are others who understand this.
    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

  15. #1950
    Join Date
    May 2007
    Location
    Rugby, UK
    Posts
    269
    Good luck to Rachel & Emily, our thoughts are with you & we're looking forward to hearing that everything went well. Michelle - We found the follow up appointment to be a bit of an anti-climax as, after weeks of looking forward to it, not much was said. It was reasonably possitive but because there were no x-rays it doesn't stop the worrying - I suppose we have years of worrying ahead.

    Celia - If you manage to get to an internet cafe, I hope you're all having an amazing holiday!
    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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