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  1. Sounds like your school district is in a slight...

    Sounds like your school district is in a slight mess right now. You may have to wait until the teachers and administration return for the new year to finalize your plans for a 504 and other issues. ...
  2. Hi, It's good to have a surgery date, finally,...

    Hi,

    It's good to have a surgery date, finally, but it also adds lots of degrees of stress knowing what the future holds. I CAN tell you that you are in wonderful hands at Shriners in SLC. They...
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    I totally understand the dilemma here. My...

    I totally understand the dilemma here. My Braydon (turning 15 in May) has a significant rib hump. It bothers him because sitting against anything hard (hard chair back, hard bench, hard anything)...
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    When Braydon had his fusion surgery (11 months...

    When Braydon had his fusion surgery (11 months old) and then his VEPTR surgery (6yrs old) he slept on a slant with a sheep skin under the sheet. This provided a softer surface to sleep on. He was...
  5. Thread: Abr

    by Carmell
    Replies
    3
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    3,067

    In children who have congenital malformations of...

    In children who have congenital malformations of the spine (bone structure did not form correctly in one or more vertebrae) no amount of "therapy" will make it structurally correct. Therapy can help...
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    This is SUCH A COMMON issue post-surgery. I wish...

    This is SUCH A COMMON issue post-surgery. I wish all ortho surgeons would help their patients with this during the post-up recovery. Your daughter's correction was amazing. Big correction. Great...
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    In addition to what Pam said, I would try to...

    In addition to what Pam said, I would try to remind her (gently, of course, teenagers...) that the risks of failed fusion are high still. The last thing on the planet she wants is an area of failed...
  8. Thread: Filum terminae

    by Carmell
    Replies
    18
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    10,187

    Hi Jennifer, This is all in jest... you...

    Hi Jennifer,

    This is all in jest... you obviously didn't see a PEDIATRIC neurosurgeon or orthopedic surgeon in SLC about your fatty filum/TC issues. They know what that means. This is another...
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    Hi Tina, I don't know if you posted anywhere...

    Hi Tina,

    I don't know if you posted anywhere else, but this is the post I saw first, and am replying to...

    Two of my three children have scoliosis. My oldest (daughter) has scoliosis. The...
  10. Just a few thoughts... 1. Physical Therapy CAN...

    Just a few thoughts...

    1. Physical Therapy CAN help with discomfort. Having scoliosis makes the body asymmetric. When you have strain on the muscles pulling on one side, it can be uncomfortable....
  11. I know of several children with SMA who have had...

    I know of several children with SMA who have had VEPTR rods placed for severe scoliosis. Let me know if you are interested in emailing them. Most I know are younger than your son.
  12. Rosemary, I agree with everyone else. You are...

    Rosemary,

    I agree with everyone else. You are in good hands. Keep asking questions. You need to understand all the complexities involved. Having a 14yr old son with congenital scoliosis, I...
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    Your situation sounds very different than any...

    Your situation sounds very different than any other I've heard of. Not that I've heard many differences, a few though. Common sense says to me that removing growing rods after 4+ years and...
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    Glad to hear Paula is doing relatively well after...

    Glad to hear Paula is doing relatively well after surgery. Re: headaches - yes, the oxycontin can be a contributing factor. Another thought - is she drinking enough water/liquids? Dehydration can...
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    Best wishes to you and your son. I can imagine...

    Best wishes to you and your son. I can imagine the anger and frustration you feel for not knowing what the docs already knew, and didn't tell you. You can't undo what happened. That doesn't help...
  16. Thread: What to Expect

    by Carmell
    Replies
    6
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    2,824

    Sending Best Wishes your way! Ask lots of...

    Sending Best Wishes your way! Ask lots of questions. And, since you already (probably) know what works best for him pain-wise, be sure to tell EVERYONE what works and what doesn't work. Every body...
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    Welcome. The only concern I have about fusing...

    Welcome.

    The only concern I have about fusing a 12yr old boy is future growth of the spine. This could (in some cases) create a problem when the unfused parts of the spine are trying to grow,...
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    Sara, Welcome. First, take a deep breath. ...

    Sara,

    Welcome. First, take a deep breath. You have time to do research and figure things out - one step at a time - before you panic. There are several variables that play into this. First,...
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    Big hugs to you, Sherry. You have double the...

    Big hugs to you, Sherry. You have double the responsibility - hubby and John. Best wishes with them both. I wish you had someone (at least a few days) to help with hubby.

    NON-SKID slippers are...
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    If there is indeed a true leg length difference...

    If there is indeed a true leg length difference (actual bones are measured at different lengths, rather than the legs being off because of uneven hips) then a shoe lift will DEFINITELY help. It will...
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    Doin' the happy dance for Savannah! I hope you...

    Doin' the happy dance for Savannah! I hope you celebrate this wonderful anniversary. Glad to hear she continues to do well (anyone expect less?).
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    My Braydon (age 13yrs old) has had several MRIs...

    My Braydon (age 13yrs old) has had several MRIs in his life. He was able to lay still at age 6yrs old to have a scan done, but that's just because he is has calm personality and has experience...
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    Ramona, I'm very sorry this is stressing you...

    Ramona,

    I'm very sorry this is stressing you so badly. I wish I had good answers to give you some peace of mind. I also think it is odd that the chest is crankshafting while the spine is solidly...
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    Hi Nola, You already know my opinion on this...

    Hi Nola,

    You already know my opinion on this topic, so I won't bother you with it again. Just wanted to say that I hope you find peace in the decisions you make. Not easy, I know. You'll do...
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    Hi ambchalise, I'm sorry to hear your little...

    Hi ambchalise,

    I'm sorry to hear your little one has scoliosis. I have lots of questions running through my head! If I knew the answers to the questions, I'd feel better about helping. My son...
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