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Thread: 13 year old/mild autism/3 curves - 1st Ortho Appt

  1. #1
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    13 year old/mild autism/3 curves - 1st Ortho Appt

    Went to our first ortho appointment today. Discovered a leg length discrepancy. Ortho is having us get a heel lift and we go back in 6 weeks for an xray with lift.

    The major curb is lumbar area. First xrays showed a 43 degree curve today's xrays show 50 degree with a risser (not sure of spelling) at 3. I am not sure what the 2 thoracic curves today as ortho was focused on the lumbar area. Last time there was a 28 and 21 degree.

    Anyone have any experience with lifts? When we left today I guess I thought it was going to be as easy as adding a lift and all was going to be good. Then I started reading and found this might be so. Still in the hurry up and wait game to see what happens when the lift is added.

    Just wondering if anyone has any experiences/additonal information.

  2. #2
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    HI. I don't know about the lifts but the reason the surgeon is only interested in the lumbar is because it is the only structural curve. He would have given you an angle on all structural curves but only gave you one. Therefore I conclude she only has one structural curve.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

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  3. #3
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    Quote Originally Posted by Pooka1 View Post
    HI. I don't know about the lifts but the reason the surgeon is only interested in the lumbar is because it is the only structural curve. He would have given you an angle on all structural curves but only gave you one. Therefore I conclude she only has one structural curve.
    I guess he is hoping with the lift to see some correction with the curve. My mom told me not to hold my breath. It sure would be nice if we slap a lift on and it looks better.

    He did mention that her hips look good and then when the xrays were taken with her laying down it appeared that the curve straightened out a bit. I have a friend who is an xray technician and she said that was good.

    Quite honestly I am not sure if yesterday was good news or no news because we are still limbo until we get her xrayed with a lift. Do not like the waiting part!

  4. #4
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    I think all curves, even structural ones, correct some when laying down.

    I don't understand the shoe lift issue at all. If the hips have come uneven due to the curve then that is probably lessening the curve. If the hips are brought back even with a lift then I would think that would worsen the curve. But of course I don't understand this issue as it relates to spinal balance.

    Was that a bending radiograph when the surgeon took one laying down?

    Also how can her hips be better due to the lifts if she just got the lifts and was laying down?
    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."

  5. #5
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    mle
    Quote Originally Posted by Pooka1 View Post
    I think all curves, even structural ones, correct some when laying down.

    I don't understand the shoe lift issue at all. If the hips have come uneven due to the curve then that is probably lessening the curve. If the hips are brought back even with a lift then I would think that would worsen the curve. But of course I don't understand this issue as it relates to spinal balance.

    Was that a bending radiograph when the surgeon took one laying down?

    Also how can her hips be better due to the lifts if she just got the lifts and was laying down?
    I think his thought process is that the hips are uneven due to the leg discrepancy. She hasn't gotten the lift yet since we just discovered discrepancy yesterday. So I guess this is the next step to determine what is causing the uneveness.

    The xrays were taking laying down on her back of her hips and the pelvic area. Then we did another set of the standing xrays. I think the standing xrays that we got yesterday are more accurate then the initial ones.

    I am just wondering if by adding a lift to balance out what has been out of balance if she will experience discomfort. I guess I am happy to see that he is taking a conservative approach and checking all the boxes.

    I have not see very many people talk about gettng leg length discrepancy and scoliosis. But if it is her leg discrepancy that is causing the curve would that not mean that the curve is non-structural??? That would be better than structural right????

    I actually spoke with a nurse yesterday and am having her call be back to go over his notes from our appointment so I can if I can any more from his thought process.

    This waiting game drives me nuts!

  6. #6
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    Quote Originally Posted by 4stoffels View Post
    I am just wondering if by adding a lift to balance out what has been out of balance if she will experience discomfort. I guess I am happy to see that he is taking a conservative approach and checking all the boxes.
    Shooting extra radiographs for no valid reason is not conservative in my opinion. But I am not understanding what is going on with your daughter so there may be a valid reason.

    I have not see very many people talk about getting leg length discrepancy and scoliosis. But if it is her leg discrepancy that is causing the curve would that not mean that the curve is non-structural??? That would be better than structural right????
    I am no anatomical expert but I do not think the hips could be so askew as to cause a 50* lumbar curve and still be able to walk. What was the leg length difference? Are they ascribing all of it to the hip tilt or are her leg bones actually of different length?

    I am not clear of the limits of hip level in affecting a lumbar curve but I suspect it is miniscule.

    The only way to tell if the lumbar is structural or not is a bending radiograph to my knowledge.
    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."

  7. #7
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    First of all, WELCOME.

    It's my understanding that anatomically we are not the same on both sides of our bodies. If the leg length discrepancy is large, then I can understand the lift. I have a small leg length discrepancy and had to wear a lift for about a year. It felt extremely odd, made me walk with a limp and did not help. To top things off, I was limited to only one pair of shoes (the one with the lift). As an adolescent, that was embarrassing. I'm not trying to be negative about it. If your daughter actually NEEDS the lift due to a large discrepancy, my advice would be to have several pairs of shoes altered so that she's not limited in her choice of shoes. I personally have a thing for shoes. I like shoes and have lots of them! Oddly enough, they NEVER took x-rays with my shoes on, ever. My curve was not in the lumbar, either. I have a perfectly normal lumbar so I don't understand why they did this to me....??? So that's my personal experience. I hope your daughter has a better experience and that the lift helps her curves.
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  8. #8
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    Chicken and egg issues

    I would like to know how orthopedic surgeons sort out the following:

    1. Whether scoliosis can cause uneven hips which causes one leg to appear longer than the other.

    2. Whether actual leg bone length difference can cause uneven hips.

    3. Whether uneven hips due to leg length differences can affect scoliosis one way or the other.
    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."

  9. #9
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    Quote Originally Posted by rohrer01 View Post
    First of all, WELCOME.

    It's my understanding that anatomically we are not the same on both sides of our bodies. If the leg length discrepancy is large, then I can understand the lift. I have a small leg length discrepancy and had to wear a lift for about a year. It felt extremely odd, made me walk with a limp and did not help. To top things off, I was limited to only one pair of shoes (the one with the lift). As an adolescent, that was embarrassing. I'm not trying to be negative about it. If your daughter actually NEEDS the lift due to a large discrepancy, my advice would be to have several pairs of shoes altered so that she's not limited in her choice of shoes. I personally have a thing for shoes. I like shoes and have lots of them! Oddly enough, they NEVER took x-rays with my shoes on, ever. My curve was not in the lumbar, either. I have a perfectly normal lumbar so I don't understand why they did this to me....??? So that's my personal experience. I hope your daughter has a better experience and that the lift helps her curves.
    It is not a huge discrepancy - 2cm. I was also wondering about the limits of shoes. Fortuneatly due to Autism she typically only wears tennis shoes or sandals. But then my thought was if she is not wearing any shoes around the house what happens.

    Clearly when we go back I have a lot more questions.

  10. #10
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    Quote Originally Posted by Pooka1 View Post
    Chicken and egg issues

    I would like to know how orthopedic surgeons sort out the following:

    1. Whether scoliosis can cause uneven hips which causes one leg to appear longer than the other.

    2. Whether actual leg bone length difference can cause uneven hips.

    3. Whether uneven hips due to leg length differences can affect scoliosis one way or the other.
    Me too! As this appears to be our issue!!!!! You definately bring ups some good questions and points. It is nice to be able to post and get some feedback.

    My mom used to be an RN so when she says don't hold your breath about this I think I am going to listen to her and not put all my eggs in this basket and expect some sort of miracle..... but then you never know.

  11. #11
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    Quote Originally Posted by 4stoffels View Post
    It is not a huge discrepancy - 2cm. I was also wondering about the limits of shoes. Fortuneatly due to Autism she typically only wears tennis shoes or sandals. But then my thought was if she is not wearing any shoes around the house what happens.

    Clearly when we go back I have a lot more questions.
    I was required to wear the shoes at all times unless I was in bed or bathing. I had to wear them in the house, too. Typically, it was our "house rule" that no shoes be worn in the house because of where we lived (there were a lot of a particularly obnoxious type of thorn that would ride in on shoes) so I felt kind of smirky about that one (it was my step-dad's rule). That was the ONLY "positive" thing I felt about wearing them. LOL... I know it sounds kind of bratty, but hey, I was a kid!
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  12. #12
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    autism and fragile x

    Hello, I have scoliosis and a doctor tried to give me inserts. Needless to say they didn't work. I wanted to tell you that I am a fragile x carrier. Carriers can often have scoliosis amoung other things. I also wanted to let you know that fragile x is the most inherited form of autism. It is a genetic condition passed through families. With your daughter experiencing autism as well as scoliosis, it might be something to bring up to her pediatrician. There is also a great website fragile.org. Just thought I would pass this information on because I know alot of people are unaware of this possible connection. Good luck with everything!

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