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  • Vertebral Stapling ~ 1 Yr Post Op

    Hi Everyone,

    Just wanted to let everyone know that Lorena had her 1 yr post op appt @ Shriners in Philadelphia last week and everything looks great!

    There has been no change in her curves at all since surgery. She's grown a total of 3 inches since the surgery most of which was between Sept-March; growth along with stability of the curve is exactly what they want.

    Luckily they've given us the okay to get x-rays done locally so we don't have to travel back to Philadelphia until June of next year.

    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
    Even though I already heard this wonderful news, CONGRATS, once again!! Lorena is an adorable little girl and I'm sure she'll continue to do very well.

    And you have given so much support to families this past year

    Keep up the good work on all fronts.
    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/

    Comment


    • #3
      Thanks for sharing the great news, Amanda. I think its fabulous her curves have not progressed, even with a 3-inch growth spurt. Good news. Take care and here's to another year of good news.
      Carmell
      mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

      Comment


      • #4
        "No change in curves"...what sweet words! Congratulations and hope things continue to go well for Lorena and you in the coming years.

        Renee

        Comment


        • #5
          Amanda,

          I'm so happy for you and Lorena!!!!! I noticed by your signature that Lorena was diagnosed with a 26 degree curve and they didn't brace her at that point - did they give you a reason for not bracing and only waiting until the curve reached 42 degrees?


          *

          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

          Comment


          • #6
            Hi Celia,

            When she was first diagnosed her x-rays were 26* then after her MRI and another set of x-rays her curve was 23* so her ortho said that because she was very flexible he wanted to monitor her very closely and if she stayed in the lower 20 range he didn't feel she had to be braced well 3 months later ~ 3 inches taller and 42*.

            Luckily he was very open minded and gave us the info on the stapling and Dr. Betz.

            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

            Comment


            • #7
              Vertebral Surgery Cancelled

              Hello Amanda,

              I just read your post and it makes me want my son to have the surgery now more than ever. It sounds like it was a great success.

              My son, Mathew is 8 and his top curve is 42 and the bottom is 31. He was scheduled to have the Vertebral Body Stapling on July 18th by Dr. Braun in Burlington, Vermont and the surgery was cancelled this last Tuesday. We drove all the way there (3 hours) for his pre-op appointment and Dr. Braun notified us that the hospital would not allow him to perform the surgery.

              How hard is it to get into Philadelphia with Dr. Betz? Do you think we can get an appointment before his curve progresses? We are in Vermont and Philadelphia is a long way from home. How long do you think Mathew would have to stay down there since it's so far from home. Sorry for so many questions. We are just so worried.

              Thank you for any help you can give us.

              Take care,
              Candi Sawyer

              Comment


              • #8
                Hi Candi,

                I know that Amanda will be responding too - but I wanted to offer my advice. You should call 1-800-281-4050 and ask for Janet Cerrone. She is the Physician's Assistant who works with Dr. Betz and she handles all of the stapling patients. She's great and she'll give you tons of information.

                Realistically, you should be able to get a date within a couple of months. I know someone who just got scheduled for August so you may be looking at surgery in September if you can get in there right away.

                We live in NY and spent nearly a week in Philadelphia for David's stapling surgery. They will help you with everything you need. One parent can stay in the child's room and a second parent can stay at a nearby hotel (at a discounted rate) or a nearby Ronald McDonald House.

                Please e-mail me if I can be of any further help.

                Best of 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/

                Comment


                • #9
                  Hi Candi,

                  Sorry for not responding sooner ~ it never fails that I'm so overwhelmed once I get home that going online just doesn't happen.

                  Anyway, I'm sorry to hear that Matthew's surgery was cancelled you'd think this is somethig that would have been ironed out prior to your appt.

                  Maria is 100000% correct call Janet Cerrone she is usually pretty quick about responding to her messages; since he was already scheduled for the surgery I assume he is a good candidate for the procedure. I would explain your current situation and you may even ask Dr. Braun if he'd be willing to call Dr. Betz, that may help expidite things a little.

                  Dr. Betz and his entire team is awesome. Lorena was only in the hospital for a total of 4 days (including surgery day) and she was up and walking doing some site-seeing around philly the day after she was discharged. We travel from Texas to Philly but it's worth the travel.

                  If you need help with travel expenses/lodging/food, etc. Shriners can also provide assistance for those things as well ~ the actual cost of the medical care is completely free for you.

                  We've actually turned our trips to the east coast into mini vacations; on our last trip up we spent 5 days in philly and took the train into NY one day and spent some time with Maria (her son David) and another mom on this forum Laura (her son Brian) ~ what an awesome time we had. The downside to Lorena's great appt is we won't get to see them again for another year but I'm not complaining.

                  Each child is different but from what I've heard and seen most kiddos are up and moving within 3-4 days and then 100% pain free within about 2 weeks.

                  Please feel free to email me if you'd like; I'd be more than happy to share more detailed info with you. domingo_amandapompa@msn.com

                  Talk to you soon.

                  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

                  Comment


                  • #10
                    stapling

                    hi can you explain to me what this stapling is and how it is done please, sorry if i sound a bit uneducated but my daughter only got her diagnosis in march so we are still learning.
                    many thanks
                    +
                    good luck
                    gill

                    Comment


                    • #11
                      Gill,

                      If you'd like to e-mail me, it might be easier. I have some articles and information on the stapling that I can send you. I also recently put together a support list of parents who are either looking into the stapling for their kids - or whose kids, like mine, have already had the stapling.

                      We'd love to add you to the group

                      best,
                      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/

                      Comment


                      • #12
                        I think it should be stressed to parents looking into this procedure that although vertebral stapling seems to be a very attractive alternative to spinal fusion, it is in fact an alternative to bracing and there is no guarantee whatsoever - and I pray this doesn't happen to any of the great parents whose children have gone through with this procedure - that spinal fusion won't be required later during the adolescent growth spurt. Phew.....that was a long sentence! It's EXPERIMENTAL and it's surgery.

                        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

                        Comment


                        • #13
                          Celia,

                          that is all true - it is an ALTERNATIVE to bracing for those who wish to make that choice. I agree with you that no treatment - be it the spinecor, casting, stapling, traditional bracing, etc. - GUARANTEES that spinal fusion will not be required later on or during the pubertal growth spurt. Rest assured, too, that Dr. Betz and his team at Shriners in Philadelphia, where most of these procedures are done, make sure everyone goes in with their eyes wide open.

                          all that being said, I - and many others - see it as one of the very best alternatives out there for certain kids, including our own.

                          The stapling has only been done for about 5 or 6 years - but so far many of these kids HAVE gone through their major growth spurt and the success rate for stapling is better than that of bracing.

                          I, for one, have never regretted my decision and I thank God every day that this option was available for David. It has truly been a Godsend.

                          Bear in mind that no alternative is without drawbacks - and, yes, many of us prefer this sugery, with a relatively quick recovery, to years of bracing. In addition, I know some older kids, who were able to participate in the decision, and also chose a relatively minor and VERY safe surgery to years of bracing they'd be facing. My older children were teens when David had his surgery and they both said that if it were them in his place, they'd choose the stapling over wearing a brace in a heartbeat.

                          Whatever methods we choose for our kids, I wish them all the very best outcome.
                          Last edited by mariaf; 07-09-2007, 01:34 PM.
                          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/

                          Comment


                          • #14
                            Originally posted by mariaf
                            The stapling has only been done for about 5 or 6 years - but so far many of these kids HAVE gone through their major growth spurt and the success rate with stapling is better than that of bracing.
                            Which article are you referring to ?

                            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

                            Comment


                            • #15
                              The statistics were given recently to another mom by Dr. Betz the "inventor" (for lack of a better word) of the procedure. I just asked her for the exact stats - for lumbar and thoracic curves - and will post - but both success rates were in the 80's. This woman's husband is also a doctor and he checked them out as well.

                              I don't know why you are so anti-stapling. It's a great alternative that has been a blessing to a lot of children - and Dr. Betz is one of the world's most highly regarded and well respected spinal surgeons in ANYONE's book. You'd be hard pressed to find anyone who'd say he's not an excellent, leader-in-his-field doctor. (In fact, when Melissa's daughter was told recently that she needed surgery, your doctor Rivard in Montreal recommended two doctors - and guess who one of them was? Dr. Betz!). Many doctors are now recommending the stapling. You are of course entitled to "dislike" the option, but I would just hate for folks not to be aware of what amounts to another alternative for them to consider - which is why I will continue to tell folks about it so that THEY can make an informed decision. We're all intelligent adults who can research each method, weigh the facts, and then decide.
                              Last edited by mariaf; 07-12-2007, 08:21 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/

                              Comment

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