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  • Recently diagnosed

    My 12-year old daughter was recently diagnosed with AIS. She has a 57 degree thoracic curve. Her pediatrician was the first to notice anything, and now we're shocked to hear that she needs surgery on her spine! She is healthy and playing sports is her favorite thing. We're going for a second opinion tomorrow.

    I'd like some reassurance that she will be able to eventually continue playing softball, soccer, touch football, and all of the other activities she loves. Can anyone comment on this?

    I've read some of you talk about more than one surgery. Is it common to end up having more spine surgery later in life?

    Does anyone know about the minimally invasive surgery that is done from the side, with 3-5 small incisions, using an endoscope? I wonder if my daughter would be a candidate and whether this procedure has good success.

    Any comments would be appreciated. Thanks and good luck to all of you and your children!

    jb
    jb

  • #2
    Hi jb,

    I can understand the overwhelming feelings you must be going through, hearing that your "healthy" child needs a major/invasive surgery. Dealing with the emotional effects of scoliosis is something every family must go through. Some go through the stages differently - there isn't a right or wrong way to feel. Having a board like this to know that your feelings are validated helps in the process of understanding the short and long term issues you need to consider.

    There are several surgeons in the country who are well-versed in the endoscopic way of treating scoliosis. If your daughter's scoliosis is a thoracic (middle of the spine) then she may be a good candidate. Lumbar curves can not be done endoscopically (my daughter's curve is a lumbar curve). A good place to find out information about this endoscopic procedure, as well as reading about other stories is http://www.iscoliosis.com

    There are many more success stories than complications, especially with young patients. Younger patients tend to recover quicker and more fully than older patients. Our surgeon told us that if our daughter needs surgery, it would be best to do it while she's still a teenager, rather than waiting into adulthood. The recovery and correction tend to be less complicated the younger they are. It is not common to have more than one surgery, unless there are more issues that "just" scoliosis.

    I also know that most surgeons advise patients with instrumentation to avoid full contact sports. Other than that, patients can resume full activity when their recovery is complete (typically 6 months or so).

    Remember that when an xray is read and measured, there is a +/- 5 degree margin of error, even when the same doctor is doing the measurement. Don't be too worried if you hear various degrees of measurements in her curve. Also, some people's spines are very flexible and get different measurements at different times of the day (it may be more severe in the late afternoon, after gravity plays a part). Having a flexible spine is a good thing.

    Good luck and I also agree that getting at least one other opinion is a good idea. The more informed you, the parent are, the better you will feel about the decisions you make.
    Last edited by Carmell; 10-15-2003, 12:51 PM.
    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/

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    • #3
      Thank you, Carmell, for replying. The second opinion specialist also recommends surgery, and says that my daughter wouldn't be a good candidate for the endoscopy procedure. They say she has two curves, a small one up high and then the larger one just below it. They're going to do the posterior procedure and they say they can usually accomplish a 60-70 degree correction.

      The doctor/nurse said my daughter will be restricted from taking gym class and sports activities for one year, which seems like a very long time, especially when you're 12. She's being very brave about it though.

      I guess the important thing is that this is something that can be treated with a good degree of success. As a result, she should suffer less or not at all later in life from back pain, etc. I pray that she'll lead a normal, happy life. It probably won't be easy, but we're confident that things will turn out well in the end.

      Best of luck to you and your daughter. If she has the surgery, I hope it is a great success.

      Julie
      jb

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      • #4
        Quick question, Julie. Did the surgeons recommend posterior surgery for the larger/lower curve only? Do they think by correcting the lower curve, the upper curve will straighten out on it's own? I would hope that her situation allows a minimal fusion - giving her more flexibility in the end, with a bigger chance of being painfree and healthy and strong for the rest of her life.

        The only negative thing I've heard about posterior fusion only in children who have not reached skeletal maturity is that sometimes they have complications called crankshaft phenomenon - which means the anterior (front) part of the spine grows, but the fused posterior part won't - causing the spine to rotate. Maybe you could ask the surgeons about their history and experience with fusing girls before they have reached skeletal maturity. Make sure she is less likely to have this type of complication later on.

        I have a neighbor who's daughter had posterior only fusion at age 11. She is now 20 and doing very well! Her curve prior to surgery was 50 degrees. They were able to correct her to 10 degrees post-op. She has not had any problems since. There are many success stories out there.

        I wish you the best.
        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/

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        • #5
          Carmell,

          I think they're hoping the upper curve will straighten out too, but I'll have to ask about that at our next appointment. Thanks for the question and the suggestions. It's great to hear about success stories. I'm hoping my daughter will be one too.

          Best of luck...
          jb
          jb

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          • #6
            Hi JB,

            I couldn't help but think of my mother when I read your note. I was also 12 when I was diagnosed with scoliosis. It was found initially in the school screening. By the time I got the note home and went to Childrens Hospital in DC, my curve was in the 50's on top and 40's on the bottom, a true "S".

            Needless to say I had surgery a few months later. I dont want to be too long winded, but just want to tell you that there are a lot of positive outcomes to this! I have had quite an experience, but like your daughter was very involved in sports etc. That actually helped me mentally get through all of it. I believe at that age it has to be harder for the parents to watch us go through it.

            It sounds like you are really on top of everything and having this website is clearly a good resource! Good luck with the surgery and keep us posted! When is it by the way?

            Take care!

            Patti
            Patti

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            • #7
              My 16 year old daughter is facing surgery soon for her 62 degree thoracic curve (50 degree compensatory lumbar). We are searching for a surgeon in the Chicago area who is qualified to perform the endoscopic procedure to find out if her condition would be correctible with this procedure. I have two questions:

              First: Does anyone know of a doctor who is experienced in endoscopic/minimally invasive procedure in the Milwaukee/Chicago/Indianapolis area?

              Second: This question is addressed to anyone who has had the traditional, long fusion - my daughter lives to dance and is terrified of the prospect of having to give it up. Realistically, how much can a person move after this surgery has healed? It is so hard to imagine the reality of it and the doctors we have spoken to give vague reassurances at best. What physically can't you do (as opposed to "shouldn't do")? She loves all forms of dance (except ballet - not a favorite); will she still probably be able to do it well?

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              • #8
                Paulasue,

                To address your second question, the level of flexibility one has after surgery is primarily a function of how many vertebrae ("levels") are fused. If your daughter's surgeon only fuses her thoracic vertebrae, she'll maintain a fairly high level of flexibility. The thoracic vertebrae do not normally bend much, so fusing them doesn't have much impact. 6 of my 12 thoracic vertebrae are fused, and I barely notice a difference in flexibility. I can't arch my back as much as I used to, or twist and bend quite as much, but these things don't impede my daily life. Certain forms of dancing might take some extra practice and adjustment, but I would guess she could still do most of what she did before.

                Now, the lumbar vertebrae are heavily involved in flexibility, so if these were fused the unfortunate truth is that she'll most likely notice a significant reduction in flexibility. Even so, that still doesn't mean she can't dance; it would probably mean that she just couldn't dance as gracefully as before.

                If her lumbar curve is truly just compensatory, your surgeon will probably only fuse down to L1 or maybe L2. Fusing L1 won't have much of an impact. Preserving motion at L3-L5 is the most important for maintaining flexibility.

                You also mention an interest in the endoscopic approach. There probably isn't a strong benefit to this approach over the traditional posterior approach in your daughter's case. Endoscopic techniques are still fairly new and have some significant risks that would probably be hard to justify.

                I hope this helps.

                Dave

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                • #9
                  Hello!
                  I had surgery in 1994 in Chicago. If you would like to e-mail me with any questions I would be glad to help!!!!

                  Kelly, Chicago, IL
                  dansuer111@msn.com

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                  • #10
                    i have scoliosis and it is bloody painfull and is really peeing me off
                    Ben Thrower

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                    • #11
                      The minimally invasive surgery is generally for moderate thoracic curves. Many thoracic curves also have lower lumbar curves that may be "scoliotic" or merely "compensatory." If the lower curve is truly compensatory and not too great in size, it is assumed that it will correct itself when the thoracic curve is fused. There is disagreement in the medical community as to how to ascertain whether or not a lower curve is compensatory (and will self-correct) or actually scoliotic and must be included in the fusion. No one wants to fuse "too short" only to find out that the lower curve won't correct; but on the other hand, the fewer vertebrae included in the fusion, the better. Dr. Lawrence Lenke in St. Louis is leading the research on a new classification system that helps doctors to better predict which of these curves are compensatory (and can be left unfused). If your daughter has a lumbar curve as well as the 57* thoracic curve, you would need to know whether it has to be included in the fusion. If it does, then she can't have the minimally invasive surgery. My daughter was seen by Dr. George Picetti in California (mentioned on iscoliosis.com) in hopes that she could have this procedure done, but her lower curve had to be included so she wasn't a candidate. He is a wonderful person and you might want to contact him either to see him or ask for a recommendation for a local doctor who performs this technique. Currently there aren't too many that have been trained to do this yet, but it seems to be increasing. One other difference is that Dr. Picetti said he braces all his patients post-op for 3-6 months because there is only one rod used in the procedure.

                      Another new thing you might want to check into is a new vertebral stapling method being used for skeletally immature patients. Dr. Randal Betz in Philadelphia is leading the charge here.

                      My daughter ended up having the traditional posterior fusion on March 18 (we are also in the Chicago area and her doctor is Steven Mardjetko - WONDERFUL - and is recovering quite well.
                      He has told her that she should not be involved in contact sports or extreme sports like acrobatic snowboarding sort of stuff, but regular snowboarding, skiiing, biking, swimming, cheerleading (no "flying"), dancing, roller blading, horseback riding (no jumping horses), basketball, volleyball, softball, track, lacrosse for girls, are all OK AFTER THE VERTEBRAE HAVE FUSED. Depending on what vertebrae are fused, she probably won't be able to do gymnastics because so much bending is required. There is a period of pretty significant restriction right after the surgery, and it seems to vary from doctor to doctor as to what is or is not allowed.

                      Trying to absorb all this information is somewhat bewildering at first - just know that this isn't an emergency and you don't have to react like you are in a crisis. Take your time. Good luck!

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