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  • Newly diagnosed twins; some questions

    Greetings. We are in Raleigh, NC.

    My identical twin daughters (S and W) were diagnosed with dextroconvex thoracic curves a few months ago. They also have kyphosis. They turned 13 in Nov 2007 and haven't hit puberty.

    I am trying to remember the angles but they were in the 20's and possibly the low 30's. The pediatric orthopod took a wait and see approach. On the next visit four months later, one daughter was up to 48 and the other is 31 if I recall correctly. I am told S needs surgery and W needs a brace.

    We have appointments for both with the surgeon in early February which will be a second opinion but since he will be doing any surgery we elect, I will likely get a third opinion also on both girls.

    I am told the surgery is well tolerated and S will never need a brace nor have to think about scoliosis again. It will be cured as good as it will even be with the surgery and will not get worse.

    I was told that if he saw W without knowing how quickly S progressed, he would predict her curve would be stabilized with a brace (or without... I'm not clear). But because S progressed so quickly, W is very likely to progress to needing surgery irrespective of what we do.

    W is scheduled for a brace but I need to investigate stapling instead for her.

    I have some questions... the first one useless...

    1. Should both have been braced at the first visit? Upon reading some of these posts, I'm thinking so. Yet the doctor said that a certain percentage of the medical community doesn't believe bracing works (I assume in the long term) so he took a wait and see approach. And I must say, my initial scans of the posts here corroborate that feeling. That is, despite bracing, folks goon to need surgery anyway.

    2. What are the statistics for progression to surgery with each type of brace and with doing nothing or going with staples? Does bracing just postpone surgery?

    3. W is interested in Spinecor for obvious reasons. It seems that Spinecor works for a while and then stops working. Our doctor didn't seem too keen on it but then again, he didn't seem too keen on any bracing. He used to do the surgery but doesn't while he is on a cane (or doesn't do it any more...I don't know which). So I don't think he is just fishing for surgical patients. He is very positive about the surgery and frankly, so am I based on what I have learned so far. Of course I need to research it more.

    4. I don't fully "get" the strong aversion to the fusion surgery among those on this board. It seems like a very rough month or two in exchange for a lifetime of forgetting about scoliosis and never needing a brace. I feel incredibly lucky that such successful surgery even exists for my daughters' condition. I even told W that since she has a high chance of needing surgery despite any bracing that, if it were me and looking at possibly wearing a brace for 3 years and ALSO needing surgery, I would forgo the brace and just do the surgery. W, however, wants to try bracing even if there is only a small chance it will work. I will let her do whatever she wants in this regard.

    Thanks in advance for any perspective on these matters.

    sharon
    Last edited by Pooka1; 01-28-2008, 04:16 PM.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  • #2
    Welcome, and I am sorry that you are going through this with your twins. I can't tell you what to do but I can only answer the question you have about the surgery and why people here seem so negative about it. For me, it was a few things. First, the thought of my daughter having to endure such a major surgery was something I couldn't face at first. I had never had major surgery nor did I know anyone who did. This may have been why I had such a difficult time dealing with it. Secondly, the thought of my daughter having to go through the rest of her life with a back that is fused and full of rods and screws as opposed to the back she was born with made me even more upset. Then you start worrying about her future and wondering if she will have back problems later on in life. And of course now you worry about her flexibility and will she be able to do all the things she wants to do in life. You are right, we are fortunate to have this surgery as an option. I just had a really difficult time accepting it for my daughter. You sound like a very strong Mom and that is awesome. The best of luck with your decisions.
    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

    Comment


    • #3
      Originally posted by Pooka1
      W is scheduled for a brace but I need to investigate stapling instead for her.
      sharon
      Hi Sharon,

      If you are interested in the vertebral body stapling or VBS (which IMHO is a great option for certain kids), here's a link to a VBS support site:

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

      You can speak to dozens of parents who have been there - and read about how these kids are doing thus far. There's a ton of information and support there. We started this group specifically because there was not much information out there on VBS.

      Also, please feel free to e-mail me as well with any specific questions.

      If you are considering VBS, I would contact Janet Cerrone at Shriners Hospital in Philadelphia. She has a new e-mail address specifically for parent inquiries - it is janetcerrone@comcast.net. Or call 1-800-281-4050 and ask for her.

      Best of luck to you!
      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


      • #4
        Originally posted by MATJESNIC
        Welcome, and I am sorry that you are going through this with your twins. I can't tell you what to do but I can only answer the question you have about the surgery and why people here seem so negative about it. For me, it was a few things. First, the thought of my daughter having to endure such a major surgery was something I couldn't face at first. I had never had major surgery nor did I know anyone who did. This may have been why I had such a difficult time dealing with it. Secondly, the thought of my daughter having to go through the rest of her life with a back that is fused and full of rods and screws as opposed to the back she was born with made me even more upset. Then you start worrying about her future and wondering if she will have back problems later on in life. And of course now you worry about her flexibility and will she be able to do all the things she wants to do in life. You are right, we are fortunate to have this surgery as an option. I just had a really difficult time accepting it for my daughter. You sound like a very strong Mom and that is awesome. The best of luck with your decisions.
        Hi Melissa.

        Thank you for this interesting perspective.

        I have had two life saving emergency surgeries (appendicitis and ruptured ectopic). I would be dead without either one. That has colored my view of surgery I guess!

        My daughters will not be in an emergency situation so that is better than my situations. Plus I am investigating the minimally invasive spinal fusion for S and the stapling for W.

        http://www.spineuniverse.com/display...ticle1450.html

        From what little I have read, the laproscopic spinal surgery is just much much better in all regards if the patient is a good candidate. I'm hoping S will be a good candidate. If she is, I will fly her anywhere necessary to get that surgery. The same with W and the stapling.

        Thanks again so much for your response, Melissa.

        sharon
        Sharon, mother of identical twin girls with scoliosis

        No island of sanity.

        Question: What do you call alternative medicine that works?
        Answer: Medicine


        "We are all African."

        Comment


        • #5
          Originally posted by mariaf
          Hi Sharon,

          If you are interested in the vertebral body stapling or VBS (which IMHO is a great option for certain kids), here's a link to a VBS support site:

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

          You can speak to dozens of parents who have been there - and read about how these kids are doing thus far. There's a ton of information and support there. We started this group specifically because there was not much information out there on VBS.

          Also, please feel free to e-mail me as well with any specific questions.

          If you are considering VBS, I would contact Janet Cerrone at Shriners Hospital in Philadelphia. She has a new e-mail address specifically for parent inquiries - it is janetcerrone@comcast.net. Or call 1-800-281-4050 and ask for her.

          Best of luck to you!
          Thank you for this! Very good information! Yes I will be investigating this as I think W is a candidate and possibly even S.

          Do you know if the stapling procedure is available anywhere near Raleigh, NC?

          sharon
          Sharon, mother of identical twin girls with scoliosis

          No island of sanity.

          Question: What do you call alternative medicine that works?
          Answer: Medicine


          "We are all African."

          Comment


          • #6
            Originally posted by Pooka1
            It will be cured as good as it will even be with the surgery and will not get worse.
            If you were told that your daughter's scoliois will be cured, you were sadly misinformed. There is no cure for scoliosis. Surgical management of this disease in its worst form is the only treatment the medical profession can offer scoliotics.

            Chris

            Comment


            • #7
              Originally posted by CHRIS WBS
              If you were told that your daughter's scoliois will be cured, you were sadly misinformed. There is no cure for scoliosis. Surgical management of this disease in its worst form is the only treatment the medical profession can offer scoliotics.

              Chris
              Okay now I'm trying to remember exactly what I was told. I specifically remember being told:

              1. she would not ever need a brace, and

              2. It would not ever get worse than the correction achieved with surgery.

              I think I translated that into "cure" meaning she is done with scoliosis decisions.

              Is that correct? Are you saying there are long-term complications of the surgery? What are they?

              sharon
              Sharon, mother of identical twin girls with scoliosis

              No island of sanity.

              Question: What do you call alternative medicine that works?
              Answer: Medicine


              "We are all African."

              Comment


              • #8
                Originally posted by Pooka1
                Thank you for this! Very good information! Yes I will be investigating this as I think W is a candidate and possibly even S.

                Do you know if the stapling procedure is available anywhere near Raleigh, NC?

                sharon
                Hi Sharon,

                I am not sure if there are any surgeons near Raleigh, NC doing vertebral body stapling at this time (I know a child coming from South Carolina to Philadelphia next week for the VBS).

                Up until recently, the only place to have the stapling was at Shriners, Philadelphia. (In addition, they have done the vast majority of staplings and some folks are just more comfortable going there because of that). However, little by little, other surgeons are learning the technique from Dr. Betz. Most recently, Dr. Hresko at Boston Children's Hospital performed the first VBS with Dr. Betz assisting.

                Actually, since there is so much interest in VBS, and not much information on the web, we are in the process of expanding the current support site into a website - and one of the things we want to have is a list, by state, of doctors whom Dr. Betz trained that perform VBS. In the meantime, I would contact Janet Cerrone. Even if you decide that you do not want to travel to Philadelpiha, Janet could do a PRELIMINARY evaluation (which usually consists of sending her x-rays and giving some medical history) to see if one or both of your children would be a candidate. In addition, she could tell you if Dr. Betz trained anyone in your area to perform VBS.

                I hope to see you on the VBS site!
                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
                  Sharon:

                  It is my understanding that even after surgery the spine does not stay corrected but worsens again and often surgical correction has to be repeated.

                  I think the stapling is intended to prevent the need for fusion of the spine and in most cases it seems to be working as intended.

                  Scoliosis and the Human Spine by Martha Hawes is an interesting book to read.

                  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).

                  Comment


                  • #10
                    Oh, BLAH ... Hawes "cured her own scoli". Get real.

                    If it were *that* easy, none of us would be planning surgery. Apply a bit of skeptism, Ruth.
                    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

                    Comment


                    • #11
                      Hi Sharon
                      Sounds like we may have the same othopedic in Raleigh - sit back and patiently watch and wait until the time they need surgery.

                      After 3 years of watching and waiting we switched Drs and opted for a SpineCor brace. We're very happy with our decision.

                      Seems like their are quite a few folks in the triangle area on this forum - maybe we need to start our own support group.

                      HaleyMom
                      Mom to Haley, 13.5 yrs old
                      Diagnosed at 6 yrs old - 18T.
                      Boston Brace at 9.5 yrs old - 34T/18L
                      Switched to SpineCor at 10 yrs old
                      Stable at ~22T OBX until 12.5 yrs old
                      Adolescent growth spurt was brutal - scheduled for surgery Dec 7th.

                      Comment


                      • #12
                        Originally posted by rtremb
                        Sharon:

                        It is my understanding that even after surgery the spine does not stay corrected but worsens again and often surgical correction has to be repeated.

                        I think the stapling is intended to prevent the need for fusion of the spine and in most cases it seems to be working as intended.

                        Ruth

                        Hi Ruth,

                        When you say "even after surgery the spine does not stay corrected but worsens again and often surgical correction has to be repeated" what surgery are you referring to?

                        If you are referring to stapling (and I am not sure if you are), then the statement is NOT at all accurate. My own son had VBS four years ago and his spine HAS remained corrected. The overall results are by and large similar or better than our own experience so I am guessing you are NOT referring to VBS.

                        Thanks for clarifying this if you would.
                        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


                        • #13
                          Originally posted by mariaf

                          I hope to see you on the VBS site!
                          Thanks for this information. I'll look forward to your site.

                          Best regards,
                          sharon
                          Sharon, mother of identical twin girls with scoliosis

                          No island of sanity.

                          Question: What do you call alternative medicine that works?
                          Answer: Medicine


                          "We are all African."

                          Comment


                          • #14
                            Originally posted by rtremb
                            Sharon:

                            It is my understanding that even after surgery the spine does not stay corrected but worsens again and often surgical correction has to be repeated.
                            Which surgery are you referring to and what is the evidence that surgery must be repeated? I think you are referring to spinal fusion, yes?

                            That is NOT what the doctor said (not that he can't be wrong). But if you have evidence that all spinal fusions need revisions then I want to know about it.

                            Thanks in advance,
                            sharon
                            Sharon, mother of identical twin girls with scoliosis

                            No island of sanity.

                            Question: What do you call alternative medicine that works?
                            Answer: Medicine


                            "We are all African."

                            Comment


                            • #15
                              Originally posted by HaleyMom
                              Hi Sharon
                              Sounds like we may have the same othopedic in Raleigh - sit back and patiently watch and wait until the time they need surgery.

                              After 3 years of watching and waiting we switched Drs and opted for a SpineCor brace. We're very happy with our decision.

                              Seems like their are quite a few folks in the triangle area on this forum - maybe we need to start our own support group.

                              HaleyMom
                              Maybe we do. In my preliminary reading, the watch and wait thing isn't obviously out to lunch but may be a bad decision in some cases.

                              W wants to try Spinecor but I have read some testimonials that it can stop working after a while. It would kill me if W had to wear any brace for a few years and still need surgery. That's too much for me to stomach but it's her decision. She has done as much or more research on this at this point as I have. So has S.

                              I'd love to exchange emails with other Raleigh folks about doctors and treatments.

                              Best regards,
                              sharon
                              Sharon, mother of identical twin girls with scoliosis

                              No island of sanity.

                              Question: What do you call alternative medicine that works?
                              Answer: Medicine


                              "We are all African."

                              Comment

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