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Thread: Vertebral Stapling Support

  1. #1
    Join Date
    Jan 2006
    Location
    Austin, Texas
    Posts
    112

    Vertebral Stapling Support

    Good Morning Everyone,

    I just wanted to let everyone know that there has been a new Yahoo Group started specifically for Vertebral Stapling Support. Parents of children who have either had the procedure done, are contemplating the procedure or anyone looking for information on the procedure is invited to join.

    Here is the link to the group: http://health.groups.yahoo.com/group/staplingsupport/

    Amanda
    Amanda

    Mom to Lorena 7 yrs old
    Diagnosed 8/2005 ~ 26 Degree Curve
    Progressed to 42 Degrees by Dec 05
    Milwakee Brace 1/16/06 - 6/26/06
    Vertebral Stapling on 6/26/06 @ Shriners in Philadelphia
    26 Degree Post Op Curve
    Last X-Rays December 07 ~ 26 Degree Curve
    Email: domingo_amandapompa@msn.com
    Website: www.vertebralstapling.com
    YouTube Video: http://www.youtube.com/watch?v=n6GmX3K7FIs


  2. #2
    Join Date
    Aug 2007
    Location
    Ottawa, Canada
    Posts
    370
    Does anyone know the maximum curve which can be stapled?
    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).

  3. #3
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    Hi Ruth,

    I answered your PM as well.

    But in case you didn't see it - GENERALLY the max is around 45 degrees. However, when David was having his surgery there was a four year old boy with a 51 degree curve getting the same surgery.

    The nurse told me it was because he was VERY flexible. Flexibility is one of the many factors they consider. They want the curve to bend (on a bending xray) to about 25 degrees.

    Hope this helps.

    p.s. the only way to know for sure is to get an evaluation. First step would be to call Janet Cerrone, Dr. Betz's Physician's Assistant (800-281-4050). Perhaps before making the tirp you could send xrays and see if they think it's worthwhile for you to go to Philadelphia. Best of luck!!

    Maria
    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/

  4. #4
    Join Date
    Aug 2007
    Location
    Ottawa, Canada
    Posts
    370
    Thanks for the info. Our daughter has very recently had bending x-rays done for the chiropractor so we can get the measurements - it looked to me like the curves reduced significantly on the x-rays. She is quite flexible - she exercises a lot. Despite her curves being around 50 degrees to look at her you would never know she has scoliosis - she has a very skinny body. Perhaps she might be a candidate for stapling. Going to see Dr. Rivard on Friday about a Spinecor brace - will see how that goes then call about the stapling too. It is probably best to know all our possible options given one doctor here in Ottawa is really pushing for surgery - this is the same doctor who told me last December, when her curves were T42/L38, that stapling is only done on very young children with very low curves!! We have a new orthopaedic doctor now......
    Thank you so much for the contact information - we will pursue this.
    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).

  5. #5
    Join Date
    Aug 2007
    Location
    Ottawa, Canada
    Posts
    370
    Another question....
    Are there any doctors in Canada doing spine stapling?

    Maria: My daughter's Risser is 0 or at best a 1.
    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).

  6. #6
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    As far as I know, there are no doctors in Canada doing the spine stapling - and just a handful in the U.S. with, as you know, the vast majority of these procedures having been done at Shriners Hospital in Philadelphia.

    If you haven't done so already, you may want to visit a website created specifically for sharing of information and experiences regarding the stapling. The link is:

    http://health.groups.yahoo.com/group/staplingsupport/

    Because of your daughter's age and degree of curvature, I would try to see if she's a candidate right away and then you can make your decision.

    Good luck,
    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/

  7. #7
    Join Date
    Sep 2007
    Location
    NJ
    Posts
    131
    Hi Ruth,
    You said your daughter's Risser is a 0 or a 1? What is that?

    Lori

  8. #8
    Join Date
    Sep 2005
    Posts
    877
    Lori,

    If your child is at a 0 or 1, there is still potential for growth. A 5 means that the child is done growing. This helps us determine the risks for curve progression since curves usual progress with growth. Most girls are done growing 2 years after their periods have started. This could mean they are done at 14, 15, 16, for example. Boys are sometimes still growing while they are in college.
    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. #9
    Join Date
    Aug 2007
    Location
    Ottawa, Canada
    Posts
    370
    Lori:
    Our doctor told us the Risser number is determined by looking at the ossification of the hip bone on x-rays. I read on this forum that the Risser can also be determined from an x-ray of the hand. The Risser is a measure of the child's skeletal maturity which is important with respect to spinal curve progression.
    There is a brief explanation of the Risser grading system at this link:
    http://www.medcyclopaedia.com/librar...sers_sign.aspx
    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).

  10. #10
    Join Date
    Sep 2007
    Location
    NJ
    Posts
    131
    Thank you both for your explanations. I don't remember Dr. Flynn mentioning any of this at our last visit. When Chris was seen in 2006 he was 16 and they did an xray of his hand and said that he wasn't done growing since his growth plate was still open. Obviously, that could have changed over the year, so I'm wondering now why they didn't do another one. Does it matter? I'm so confused.

  11. #11
    Join Date
    Aug 2007
    Location
    Ottawa, Canada
    Posts
    370
    The last time our son was seen by the doctor he didn't mention his Risser number so we have asked for the hospital radiology report hoping it might he on this. We were told since he is 16 that his curves won't progress further but I have learned from this forum this may not be the case. I am confused and uncertain about his future with scoliosis at this point. We thought he had been lucky and would not need surgery but I am not so sure any more. He will be seeing a new orthopaedic doctor in early November.
    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).

  12. #12
    Join Date
    Sep 2007
    Location
    NJ
    Posts
    131
    Ruth,
    When Chris was seen last year at CHOP, I was ecstatic that the doctor said he "would blow smoke out of the office" if I asked him to do surgery at that time. His curves were 32 and 37. I was practically skipping out of the office I was so happy. It didn't last long. In the past 17 months, they have progressed to 46 and 54. Our faces dropped down to our knees when we looked at the current xray next to last years. I wanted to cry. So, I know how you feel. I feel like I was clueless on how quickly a curve can really progress. Chris is my oldest child and our first experience with scoliosis and I really regret not researching it more prior to him needing this surgery. I feel so guilty and guilt is a tough feeling to have when it comes to your kids.

    Lori

  13. #13
    Join Date
    Sep 2005
    Posts
    877
    Lori,

    Was Chris in a brace at all? Please try not to waste all of your precious energy on guilt. You could have found his curve when it was at 10 degrees, put him in a brace until he stopped growing and still found yourself with a boy with very large curves. I have talked with many Parents who have lived that particular scenario. I believe these stubborn aggressive curves will continue to progress no matter how often we monitor them, agonize over them, brace them, etc. Nicole had an amazing initial correction in Spinecor. For a while, it looked like she would beat the odds. I don't have to tell you how that worked out. There are too many things that are out of our control when it comes to scoliosis. You just have to accept what you are dealing with now and make the best decision for Chris that you can.

    You are going to a wonderful hospital and we will all be here for you to help you get through this.
    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. #14
    Join Date
    May 2006
    Location
    Near Houston, TX
    Posts
    495
    Lori

    Melissa is so right, I went through a period of guilt even though I did try bracing and therapies. I wasn't as tough as I should have been about enforcing the rigid brace wearing but she was struggling in it so much. I do feel she would have progressed regardless of bracing. If this makes you feel any better, I've had several orthopedic surgeons tell us that bracing isn't as effective for large lumbar curves, one even said he would not have put her in a brace at all because of the type of curve she has. As for alternative therapies, the ones we tried weren't effective, so I don't have regrets that there was something else out there we should have tried.

    I would switch places in a heartbeat with Sheena if I could, but I guess this is her burden in life and I can't take it away, I can only ease her way and help her as much as I can.
    Best wishes,

  15. #15
    Join Date
    Sep 2007
    Location
    NJ
    Posts
    131
    Chris was never in a brace. When he was seen by Dr. Spiegel at CHOP in 2006 he told us that we could try a brace but he would have to wear it for 22 or 23 hours a day. He said that bracing is much more sucessful in girls than boys, compliancy is a huge factor, and there was an 85% chance that it would help prevent his curves from progressing. We talked it over with Chris and he told us flat out that he won't wear it. His refusal to wear it sealed the deal. How can you force a 16 year to wear a brace to school everyday? Wrestling him to the ground every morning and strapping it on him didn't seem like such a good idea. I know that socially it would be horrible for him which I totally understood. The mother in me wanted to force it but I knew it would be a losing battle. I have a hard enough time making him wear his retainers at night!! So, we opted to wait and watch. We lost that gamble.

    Sherie and Melissa, it does make me feel better knowing that you braced your kids and it still didn't make a difference. I guess I need to back off thinking about the "what if's". It's pretty pointless, I guess. Thanks for your support.

    Lori

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