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  • X-rays and our story so far

    My daughter is almost 12. So far she's had 2 x-rays,and another will be happening soon. She's had one with her shoes on,and one with them off! The one taking the X-ray at our local hospital told her to leave her shoes on and i questioned him about it,but he said it didn't matter. Also should the X-ray be taken when the child is relaxed and in the lopsided position,or should the tech try getting the child to stand as straight and even as possible?

    A little background on my daughter,she's got a lot going on so its a little overwhelming,and i'm still not sure what is causing what and what to do,but somehow it all ties in together i'm sure. I would love to hear if anyone else has anything similar.

    She's always had a Pectus Excavatum,but mild. At the time of puberty it seemed to get worse. At her yearly physical ,the ped said she had scoliosis , i noticed her back feeling different,like hump when she was sitting,it came on very quick! We went to the hospital for x-rays and sure enough,she has 2 small curves. We went to the orthopedics Doctor and he took another X-ray,and we ended up with 2 more diagnoses. spinal bifida occulta,and sprengles. At the same time my daughters shoulder was constantly higher then the other,and sometimes it's really exaggerated,she also complains of pain. SO this is where we are at now.
    We go for our second appointment this month.

    Thanks for reading and your help with anything

    Jennie

  • #2
    If she's really tall and lanky, with scoliosis and pectus excavatum (sp?) she should be checked for Marfan's Syndrome.... Those two are associated in this syndrome, the only reason i know is because I am rather tall and (was) really really lanky when I was diagnosed with scoliosis and I was tested for Marfans (either with a ultrasound of the heart, because it can be associated with an aortic defect, or a genetic test). I was not found to have it, but it's worth the check if she does fall under that category.
    aBbiE
    22 yr old F,KU college student
    Kyphoscoliosis...
    Scoliosis (25T, 23L) diagnosed @ 14 yrs old; curves June 08 were 45T, 32L with 18 degree rotation
    Kyphosis of 65 degrees...
    I am missing a lumbar vertebrae

    Surgery 6/30/2008 with Dr. Lawrence Lenke
    Fused T2-L2


    before/after pics
    all smiles!

    Comment


    • #3
      Thanks Abby,

      My daughter is skinny,but not tall. Thanks so much for trying to help. I do believe she has something,but what,I don't know.

      Jennie

      Comment


      • #4
        Maybe I've posted in the wrong section? I am not good with forums.

        The Spine Kids group feels the shoes are always off and no sitting during X-rays. I am very impressed with the kids over there! I was hoping to get some feed back over here too,because i'm wondering how you handle the shoe issue. You would think the hospitals doing this would know the right way.

        Just something to think about ,in case you have the option of shoes on or off.
        Her first X-ray looked alot worse with the shoes on by the way.

        Thanks again for any feedback.
        Jennie

        Comment


        • #5
          I have always had my shoes off. But I must say it depends on who takes the x-rays and how much they know, because sometimes I get people who know nothing about taking scoliosis x-rays and they end up taking way to many. I have learned to speak up and make sure they understand what the Dr. is asking for before we start or i'll ask for a different tecnican.
          Patty 51 years old
          Surgery May 23, 2007(43 Birthday)
          Posterior T3- L4
          Pre surgery curves
          T-53degrees
          L-38degrees
          and a severe side shift to the right.
          Post surgery curves
          Less than 10 degrees
          Surgery April, 2006
          C4 - C6

          Comment


          • #6
            Jennie,

            I'm almost 40 (in July .. ack!), recently (13 weeks ago) fused, and have almost 30 years of films behind me.

            My scoli x-rays began in 1979 (age 10), and I have *never* had an x-ray taken in shoes. It's ALWAYS (without a single exception) been barefoot.

            Even without lifts, *any* shoe heel (even < 1") would alter posture (particularly in a sagittal view). An ortho who would even suggest taking films under those conditions is uneducated at best, incompetent at worst.

            Regards,
            Pam
            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


            • #7
              When my daughter had her most recent x-ray (which is the second one she's taken), I was in the room (I wasn't in the room the first time, one year prior). The tech said that it didn't matter if she had shoes on or not. I thought better of it and told her to take off her shoes.

              But something is still bugging me about that x-ray session. At one point she was turned to the side and I think one foot was up on an incline on this thing she was standing near. I couldn't tell exactly, but it looked like it. I wonder if that affected her x-ray at all? I was thinking that maybe when she gets the next x-ray done in her new brace (sometime in the next month), I may ask if they can take another x-ray of her NOT in her brace, just to see if the other x-ray was faulty.

              I also found out that all x-ray facilities are not created equal. At Stanford hospital apparently they use state-of-the-art digital equipment. At the other hospital (Sequoia, which is closer to our house) they do not. I never would have thought of it -- I mean an x-ray is an x-ray, right? Well apparently not. The doc at Stanford said it was hard to exactly tell her Risser number because the x-ray was fuzzy and he is used to seeing much sharper images. Suffice to say, all her future x-rays will be done at Stanford.
              14-yr-old daughter recently DX'd with 30 degree thoracic curve. Night-time Charleston Brace started in May 2008.

              Comment


              • #8
                Nikkismom,

                I would be concerned too,but i'm sure the curve was still significant enough for a brace,can you see her curve? 30 sounds like a lot,but i am so new to this ,so i don't know what 30 looks like.
                Our X-rays done at the hospital,look a lot worse then the one done at the orthopedics office! They make sure she is straight as can be and the feet are even.
                I read in your other post your daughter just got braces too. We are going through the same thing. Next week my daughter gets a palate expander and then in 2 months braces. My feeling is ,since her lower spine is now apparently twisted she will be getting a brace too. This is just awful!

                Is your daughters brace plastic?

                Jennie

                Comment


                • #9
                  As the others say, the shoes should definitely be off because they can impact the reading. While it might be close enough to make an initial diagnosis of scoliosis, they will need to be able to track her curve over time. Xrays need to be taken in a consistent manner so that if the curve is measured at a different size (within a few degrees margin of error), you will be able to compare the progress/trend. In fact where my daughter has her xrays taken, they have a spot marked on the floor where she has to put her feet every time so that she is standing as consistently as possible from xray to xray. Good luck!
                  daughter, 12, diagnosed 8/07 with 19T/13L
                  -Braced in spinecor 10/07 - 8/12 with excellent in brace correction and stable/slightly decreased out of brace curves.
                  -Introduced Providence brace as adjunct at night in 11/2011 in anticipation of growth spurt. Curves still stable.
                  -Currently in Boston Brace. Growth spurt is here and curves (and rotation) have increased to 23T/17L

                  Comment


                  • #10
                    Originally posted by borngmama
                    Nikkismom,

                    I would be concerned too,but i'm sure the curve was still significant enough for a brace,can you see her curve? 30 sounds like a lot,but i am so new to this ,so i don't know what 30 looks like.
                    I think ~30* curves can have a range of appearances depending, in part, on how much rib rotation accompanies it.

                    Savannah's curve has always been more noticeably I suspect because she had more rotation. If I recall correctly, at about 30* or even a bit less, Savannah's curve/rotation was so noticeable my friend mentioned it. That's when I took both my daughters to the ped for the diagnosis. Savannah also held her right shoulder noticeably higher at all times.

                    Willow has a 33* curve and very little rotation. Even knowing she has a 33* curve, I have trouble seeing any assymetry. There is almost none looking from the side (i.e., almost no rib hump). But if she is wearing a tight shirt, knowing what to look for (ribs slightly closer to the right arm when the arm is hanging down) then I can see it. It is not noticeable to me if she is not standing straight with both arms hanging. Her shoulders and hips are even and she walks evenly. I doubt anyone would note a problem in Willow if they didn't know what to look for.

                    I also think it's the case that Savannah's curve never stopped progressing (until her "cosmetic" surgery to correct it of course )whereas we know Willow's has gone months without measurable change. The two girls clearly have different trajectories on many fronts.

                    Long irrelevant aside...

                    My concern with Willow is even if the curve stabilizes below surgery territory now, I'm not convinced it won't move in the future. That is, I think the idea that curves that hold through adolescence will not likely move later on may need to be revisited. A single 33* curve just doesn't seem like it can be stable over a lifetime. I think the compensating lumbar curve will worsen per se as a result. If she's going to need surgery, I want her to get it as a kid. I am worried the brace will hold the curve for now and only delay when she needs surgery. That's another reason I think she should consider not wearing the brace.

                    I think in the long run, bracing for Willow might actually be a very bad decision because of this. Alternatively, if she doesn't wear the brace and the curve doesn't move, she's over a barrel anyway because she will be into adulthood without the surgery and may have to face it later as an adult. Because of this, I think she got the worse deal between her and her sister in my opinion.

                    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


                    • #11
                      Savannah

                      I will get the report Monday to see what we are looking at now,but on my daughters last X-ray both curves were under 20 but its noticeable,especially with the shoulder being higher,which is supposedly from the sprengles,and not the scoliosis, its so confusing!
                      What age was Savannah's when she had her surgury? What degree was her curve when she had surgury?

                      Comment


                      • #12
                        Savannah had her surgery in March this year. She is 13. She had a thoracic curve of 58 degrees. She was diagnosed in early fall of 2007.
                        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


                        • #13
                          jillw nailed a point not yet mentioned: I don't know *exactly* how much shoes (surely it depends on the heels) can affect Cobb measurement via x-ray, but x-rays need to be taken consistently.

                          Honestly, I'd never even heard of an x-ray tech (much less had one try to) who x-rays a patient in shoes. And again, that's in 30 years of x-rays for me (I've been radiated enough I should glow in the dark ).

                          Dark humor aside, I don't recall whether it was this thread or another, but while individual x-rays are considered within "acceptable" radiation levels, I'd be furious if a tech attempted to x-ray my child without a shield over the reproductive area.
                          Originally posted by Pooka1
                          Willow has a 33* curve and very little rotation. Even knowing she has a 33* curve, I have trouble seeing any assymetry. There is almost none looking from the side (i.e., almost no rib hump). But if she is wearing a tight shirt, knowing what to look for (ribs slightly closer to the right arm when the arm is hanging down) then I can see it. It is not noticeable to me if she is not standing straight with both arms hanging. Her shoulders and hips are even and she walks evenly. I doubt anyone would note a problem in Willow if they didn't know what to look for.
                          Sharon, this was exactly the case with me (my curve was barely visible to the untrained observer), and I had a ±53° right thoracic curve, apex at T9 ... and a +2 rotation.

                          My rib hump never showed (Really. Not at all.) unless I bent over. If I bent over to deliberately show someone, THEN they'd proclaim "Oh, MY GOD!". If I bent over in a normal day to retrieve something I'd dropped, no one ever commented.

                          My shoulders were level. My right shoulder, however, was rotated forward in the socket; I learned to compensate posturally to a large extent. I was also able to tighten my abs and temporarily flatten out the right front protruding rib cage edge area.

                          This shot was taken in a photoshoot I did about 2 years ago, and you tell me ... do you see a ±53° curve there? It certainly doesn't resemble what you'd think my pre-op A/P x-ray would show in "real life", eh?

                          Originally posted by Pooka1
                          My concern with Willow is even if the curve stabilizes below surgery territory now, I'm not convinced it won't move in the future. That is, I think the idea that curves that hold through adolescence will not likely move later on may need to be revisited. A single 33* curve just doesn't seem like it can be stable over a lifetime.
                          I believe a ±33° - or higher - curve CAN remain stable: Mine held at ±53°, and as I said earlier, I had 30 years of x-rays to track it.

                          Understandably, you can't be convinced Willow's curve will remain stable because they don't know enough about why some progress and some don't.

                          What I will tell you is it's widely believed a curve in the range of ±50° can *generally* (in fact, most often) be expected to progress at a rate of ±1° per year. Mine did not.

                          I'd ask you to consider all this when you decide whether bracing (especially since it's currently just a nightime regimen) is worth it for Willow. My case (anomaly or not) proves not only that a curve *can* hold, but a curve quite a bit more severe than ±33° can hold.

                          Willow could very well fall into a subset of patients who ARE held in check by a brace, and I'd hate to see her progress unnecessarily. And, yeah ... I know ... "where's my ^*%& crystal ball?!". Only you can decide what's best for her, but I'd ask that you remember my case when you do.

                          Yes, I went on to have fusion as an adult, but ONLY for pain; NOT to halt a progressing curve.

                          Originally posted by Pooka1
                          I think the compensating lumbar curve will worsen per se as a result.
                          If you look at my x-ray timeline, my compensatory lumbar curve appears to have worsened *post-op*. Actually, correction of my structural thoracic curve simply forced my body to compensate in areas that were tight. I fully expect as time goes on (and Hanson has told me continued correction can be expected for 6 months or more), my compensatories will "fall out" as those muscles loosen. Hanson has also projected that to be the case from very early on. I'm quite excited to see my next round of x-rays ... the last batch was taken at 8 weeks post-op.

                          Honestly, I wouldn't be overly concerned with her lumbar curve if it's truly compensatory. It's easy to understand your worry, but it's also not a case of "if you make that face it's going to stick that way!".

                          If Willow's structural curve stays under surgical intervention level, her lumbar compensatory will simply balance it. Remember, many people have balanced curves in the ±30-40°+ range, and they live with no pain. Just like everything else about scoliosis, nothing is a given.

                          If she progresses, and *does* need surgery, her compensatory will be addressed via correction of the structural curve - and more likely than not, she'll suffer no ill effects from compensation.

                          Originally posted by Pooka1
                          If she's going to need surgery, I want her to get it as a kid. ... if she doesn't wear the brace and the curve doesn't move, she's over a barrel anyway because she will be into adulthood without the surgery and may have to face it later as an adult.
                          From some of the stories on here, I can well understand your fear of adult surgery. I also understand you want definite answers to questions you just can't get right now.

                          Sharon, don't think of it as "if she doesn't wear the brace and the curve doesn't move, she's over a barrel anyway ...". This isn't BAD, this is the best imaginable scenario (and I'm sure it doesn't feel that way).

                          ±33° is actually a mild to very moderate curve, and I don't know of any surgeon who would perform fusion surgery (without a solid history of progression) on an adolescent OR adult at that level of curvature.

                          Please keep in mind that the adult stories you read on here are just as likely to be *atypical* as *typical*. People who don't experience difficulty with fusion surgery aren't generally going to gravitate to a support forum.

                          Yes, adolescents are *generally* expected to have better outcomes, better correction and easier recovery. That also doesn't guarantee fusion is as easy on every teen as it was on Savannah, Kimmy or Elysia - nor does it guarantee fusion is a nightmare for every adult. Unfortunately, there are teens on here who had a *much* tougher recovery than I did at 39 years old.

                          Bottom line is all you can do is wait and watch right now. Willow can increase her chances of successful surgical intervention (IF ever required) by doing all she can to stay limber and flexible.

                          I wish I could be of more help, but all I can do is offer you hope. Hang in there.

                          Regards,
                          Pam
                          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

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