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  • Hi Elisa,

    No problem being nosy - I brought it up.

    As best I can discern, people with high thoracic scoliosis and/or kyphosis (both of which my son has) are more likely to start curving forward above the fused segment. So, although their main curve is fused, they start getting a severe head-forward posture.. Since my son's head forward posture is his *main* complaint now (and it's much, much better than it used to be), surgery could actually make his condition worse. If the curve above the fusion gets too bad, then they have to fuse into the neck.

    So, yeah, if it weren't for that, I'd be more on the fence about surgery. But, given his risk of further complications with surgery, we're open to just about anything to avoid it.

    I keep saying this, but I'm just completely shocked at how little focus there is on this in the literature. If "regular" scoliosis fusion made the complementary curve *increase," the literature would be full of it and doctors would be working furiously to resolve the problem (and would likely not be doing so many surgeries). But, I guess, because it's a somewhat small subset who have this risk, the literature is fairly mute on the matter.

    Comment


    • Originally posted by hdugger View Post
      Hi Elisa,

      No problem being nosy - I brought it up.

      As best I can discern, people with high thoracic scoliosis and/or kyphosis (both of which my son has) are more likely to start curving forward above the fused segment. So, although their main curve is fused, they start getting a severe head-forward posture.. Since my son's head forward posture is his *main* complaint now (and it's much, much better than it used to be), surgery could actually make his condition worse. If the curve above the fusion gets too bad, then they have to fuse into the neck.

      So, yeah, if it weren't for that, I'd be more on the fence about surgery. But, given his risk of further complications with surgery, we're open to just about anything to avoid it.

      I keep saying this, but I'm just completely shocked at how little focus there is on this in the literature. If "regular" scoliosis fusion made the complementary curve *increase," the literature would be full of it and doctors would be working furiously to resolve the problem (and would likely not be doing so many surgeries). But, I guess, because it's a somewhat small subset who have this risk, the literature is fairly mute on the matter.
      Thanks for explaining that hdugger. I am only beginning to learn about this 'severe head forward posture' thing you are referring to so I need to do more research on that. With the x-rays I've posted here, do you/and others think my son has a high thoracic curve? Looking at him right now, his head posture looks pretty normal to me, maybe he leans/turns his head a bit more to the side but I don't see a front lunge look if that's what you mean.

      I've been analyzing his back lately/as usual and it actually seems somewhat straighter or less crunched up than it was. He's been hanging upside down regularly on that exercise bar as well as visiting the chiro once a week and has not been complaining of backaches lately nor has he been using any of that deep muscle cream. Is it possible that this recent growth spurt has stretched him out a bit as well?
      Son 14 y/o diagnosed January 20th. 2011 with 110* Curve
      Halo Traction & 1st. surgery on March 22nd. 2011
      Spinal Fusion on April 19th. 2011

      Dr. Krajbich @ Shriners Childrens Hospital, Portland Oregon



      http://tinyurl.com/Elias-Before
      http://tinyurl.com/Elias-After

      Comment


      • I think your son's curve is a little lower then my son's. Here's his xray

        http://www.flickr.com/photos/45701845@N05/4195964145/

        His curve is something like T2 to T7

        Comment


        • Okay, I'll try this again b/c I got the wrong image.

          Yes, your son's curve does look a bit higher up than mine but my son's curve seems a lot more severe.
          Attached Files
          Son 14 y/o diagnosed January 20th. 2011 with 110* Curve
          Halo Traction & 1st. surgery on March 22nd. 2011
          Spinal Fusion on April 19th. 2011

          Dr. Krajbich @ Shriners Childrens Hospital, Portland Oregon



          http://tinyurl.com/Elias-Before
          http://tinyurl.com/Elias-After

          Comment


          • Originally posted by Elisa View Post
            With the x-rays I've posted here, do you/and others think my son has a high thoracic curve?
            I think Linda might know how surgeons define "high thoracic curve."

            It's hard to say because I don't know what the hell I'm talking about and the radiographs are very hard to read especially when one doesn't know what they hell they are talking about.

            But with that said, I think your son has a Type 1A Lenke curve (single thoracic) with an apex of about T7. I am guessing that is not considered a "high" T curve but of course I don't know what the hell I'm talking about. (smiley face)

            I am further guessing they will not need to go into the lumbar at all and that the curve is not high enough to worry about proximal junctional kyphosis (PJK, bending forward) post op.

            Of course your surgeon will tell you the straight dope on all of this. Ask him specifically about PJK if you are worried.
            Last edited by Pooka1; 12-25-2010, 09:56 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."

            Comment


            • Hi chaps, I believe "high thoracic curves" are generally considered to have an apex at T7 or above, and a TLSO brace would be ineffective in attempting to control such curves - in former years the Milwaukee would be advised instead. I could be wrong though, Linda will certainly know more.

              I've not personally known of anyone who has developed post-op PJK when they only had scoliosis; all the cases I know of (sadly, there are quite a few) are in people who had kyphosis/kyphoscoliosis with forward head position preoperatively.

              Comment


              • Thanks, Toni. Yes, I think all of the cases I've seen (and my pre-surgical son) have some kyphosis before surgery.

                Have any of the cases you've seen advanced to surgery to fuse the PJK? Or did they resolve in some other way?

                Comment


                • I've seen a case where a fusion was extended up from T2 to T1 specifically to help the PJK, but no surgeries into the cervical region. The other people I know who are dealing with post-op PJK are managing as best they can with physio, but I'm not sure how effective it is.

                  Comment


                  • Originally posted by jrnyc View Post
                    i managed for decades without pain, and then for another decade with little pain...
                    the difficult thing is to have a lot of pain and worsening of progression at an older age, because infirmities often come later in life, and that is when one's health is not at the most optimum level...so it can be a lot to deal with, if one's back is bad, then the knees go, and who knows what is next! not that scoli is easy at ANY age...

                    if, as the doctors and surgeons tell me, many/most adults are more likely to herniate disks at an older age, then those with scoli may be at risk at that point, because progression can accelerate with the hernation, as it did for me...and so can the pain!

                    i am not knocking living with a small curve for many years without trouble...just saying that it makes one more vulnerable...at any age...if any injury happens to the spine...

                    oh...i think maybe it is time to change the name of this thread...?

                    jess
                    Unfortunately, I've read medical papers that actually state the odds of getting pain for those who have been fused depending on which end vertebrae is used, which can be quite high....so I don't think fusing the spine stops the pain of scoliosis with age.

                    Comment


                    • Originally posted by skevimc View Post
                      You all are already mentioning this, but if the scoliscore is cornering the market on who will need surgery and who won't, then another area of research begins to develop in order to improve/decrease the curve.
                      I personally believe there is an effort in this country to start treating scoliosis as it is or was treated at Our Lady's Hospital for Sick Children in Dublin, Ireland. Which is to not treat it at all, unless it reaches surgical territory, as reflected by the study done by CJ Goldberg et al, in Ireland.

                      They just have to convince the public and medical communities that people should be satifisfied with no medical treatment of scoliosis unless it is going to reach surgical territory, when it has become a very large deformity and who cares about all those kids who stopped between 30 and 50 degrees...they'll just have to deal with it.

                      I believe the change agents are already in place trying to effect that change in thinking.

                      Comment


                      • My case:big fusion-no pain

                        Originally posted by Ballet Mom View Post
                        Unfortunately, I've read medical papers that actually state the odds of getting pain for those who have been fused depending on which end vertebrae is used, which can be quite high....so I don't think fusing the spine stops the pain of scoliosis with age.
                        I am 68. I was fused T-4 to sacrum 8 years ago. I am absolutely, delightfully pain free.

                        My original,(1956) old fashioned, non-instrumented fusion T-4 to L-2 lasted 46 years. I had a triple curves. The compensatory curve below the original fusion doubled in the last 20 years before my revision.

                        I really shudder when I hear parents with children having large curves delay surgery. It always gets worse and really damages the psyche of an adolescent--during the time when body image is so important.
                        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

                        Comment


                        • Originally posted by Karen Ocker View Post
                          I am 68. I was fused T-4 to sacrum 8 years ago. I am absolutely, delightfully pain free.

                          My original,(1956) old fashioned, non-instrumented fusion T-4 to L-2 lasted 46 years. I had a triple curves. The compensatory curve below the original fusion doubled in the last 20 years before my revision.

                          I really shudder when I hear parents with children having large curves delay surgery. It always gets worse and really damages the psyche of an adolescent--during the time when body image is so important.
                          Agreed on all counts. There is a lot of blind leading the blind leading the naked misleading statements put out there.

                          What I find truly disconcerting is the relative ease with which some folks leap to conspiracy theories. Day to day existence seems taxing for some folks. I think a scoliosis diagnosis actually breaks some parents based on certain posts here on the forum. Life is cruel and unfair.
                          Last edited by Pooka1; 12-27-2010, 03:14 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."

                          Comment


                          • I'm pretty certain none of us are qualified to do psychological evaluations.

                            As one of those "parents of children with large curves," we're all doing a balancing act between doing the most good vs. doing the least harm. For some people, that calculation will lead directly to surgery, and for some it won't.

                            I feel like I'm saying this endlessly these days, but these decisions lie solely between parent, child, and doctor. Noone outside that circle has the necessary qualifications or information to second-guess those decisions.

                            Comment


                            • Originally posted by hdugger View Post
                              I'm pretty certain none of us are qualified to do psychological evaluations.
                              Well, lay folks might be on firmer ground with that compared to, say, biochemistry which is an actual science.
                              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


                              • Psychological diagnosis is within the medical realm, regardless of our opinions of the caliber of the research. As with all medical decisions, it's best left to someone with training.

                                Anyone is qualified to read, make sense of, comment on the available research in general and as it applies to their own treatment.

                                Noone currently participating on this forum is qualified to diagnose illness or treatment of fellow board members. Those decisions lie solely between patient and doctor.

                                Comment

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