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Thread: How do I find the right surgeon for my son's surgery?

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  1. #1
    Join Date
    May 2012
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    How do I find the right surgeon for my son's surgery?

    Hello,

    My 17 year old son has a 48 degree C curve. The doctors say he should have surgery within the year. Now that I have stopped crying (finally), I need to find the best surgeon. We live in Fort Collins, CO and have been to the Children's Hospital in Denver. I haven't heard good things about them and would like to explore other options. Does anyone have a surgeon they highly recommend? Also, should we get an MRI? His curve changed fast so I haven't had time to do a lot of research on the process. Please guide me.

    Jill

  2. #2
    Join Date
    Aug 2009
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    1,164
    I'm so sorry to hear that you son has scoliosis. As a parent of a son with scoliosis, we cried a lot of tears as well.

    Our doctor (who is a member of the scoliosis research society) told us that, because scoliosis in boys is rare, they often do an MRI to rule out any other underlying cause. In my son's case, the MRI revealed that he had congenital (and not idiopathic) scoliosis. But, lots of boys have idiopathic scoliosis, just like girls.

    Best wishes - it does get better.

  3. #3
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    May 2012
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    Quote Originally Posted by hdugger View Post
    I'm so sorry to hear that you son has scoliosis. As a parent of a son with scoliosis, we cried a lot of tears as well.

    Our doctor (who is a member of the scoliosis research society) told us that, because scoliosis in boys is rare, they often do an MRI to rule out any other underlying cause. In my son's case, the MRI revealed that he had congenital (and not idiopathic) scoliosis. But, lots of boys have idiopathic scoliosis, just like girls.

    Best wishes - it does get better.
    Thank you for your kind support. Is the treatment the same for congenital? How is your son?

  4. #4
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    Feb 2013
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    Tampa, FL
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    Sorry to hear about your son's Dx. I know who how shocking it can be and worrisome. We had a quick Dx for my son also and are looking at surgery in the next few months. My son is 15 and was just diagnosed in Feb with a T55, L42. So far we've had 5 consults to find the right surgeon. It is hard, since like us, you probably haven't had the years of consults, Xrays and bracing appointments to build a rapport with the doctor. But in a way that is a good thing!

    I came to realize from reading the posts and talking to other moms in person, that people get this surgery done all over the world, there are lots of great doctors for Scoilo surgery. Yes it is scary and a big deal, but it is doable. Lots of surgeons can handle it.

    Another great resource is the book "Scoliosis Surgery: The Definitive Patient's Reference" by David K. Wolpert. This forum a lot of the same info, just not as organized.

    Everyone on this board is so helpful and supportive, you've got support here!

    All the best for you and your son!
    Mom to son with new straight spine 8/15/2013 T16, L16
    Pre op T65, L?
    diagnosed 2/21/13 T55, L42

  5. #5
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    Aug 2009
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    Quote Originally Posted by jille View Post
    Thank you for your kind support. Is the treatment the same for congenital? How is your son?
    And thank you

    He's great - just about to head off to graduate school and very well-adjusted, happy, etc.

    We had an odd path through our diagnosis. He wasn't diagnosed until he was 16 (with a 33 degree curve) and then we were told through several appointments that he was done growing and his curve wouldn't increase, all while his curve *was* increasing. So, he hit adulthood with a 50-something degree curve.

    Because he's an adult, the treatment plan is different. Adults don't have surgery unless they're in pain or progressing. So, he hasn't had surgery, but managed to *look* straighter through a combination of massage and exercise. I assume he'll eventually need surgery, but it hasn't happened yet

  6. #6
    Join Date
    Aug 2004
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    ny
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    Hi Jill,

    I'm sorry to hear about your son's diagnosis. Please know that we all can relate to what you are going through. The Shriners Hospital in Salt Lake City has an excellent reputation for treating scoliosis. You might want to check them out for another opinion.

    Best of luck to you and your son. Please keep us posted.
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  7. #7
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    May 2012
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    This is the first day I have not cried while discussing my son's scoliosis. It's because I feel the kindness and support from all of you-- you are giving me strength. I have an appointment in August with Dr. D'astous who is with the Shriner's Hospital in Salt Lake City. I feel like this is a place where money is not the main objective, unlike Children's Hospital in Denver.

    I hope I can be the one who helps the scared mom in the future

    Thank you all!

  8. #8
    Join Date
    Jan 2008
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    NC
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    Quote Originally Posted by jille View Post
    Hello,

    My 17 year old son has a 48 degree C curve. The doctors say he should have surgery within the year. Now that I have stopped crying (finally), I need to find the best surgeon. We live in Fort Collins, CO and have been to the Children's Hospital in Denver. I haven't heard good things about them and would like to explore other options. Does anyone have a surgeon they highly recommend? Also, should we get an MRI? His curve changed fast so I haven't had time to do a lot of research on the process. Please guide me.

    Jill
    Well I can tell you the reason my one kid had an MRI was because the curve moved fast... 5*/month for the entire observation period before it was fused. So fast progression is definitely an indication for an MRI to my knowledge.

    Her identical twin's curve moved fast at times but not that fast and she never got an MRI. I can't say whether or not if part of that reason was because her identical twin's MRI was normal.

    Good luck.
    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
    Join Date
    Oct 2012
    Posts
    39
    I have a son with scoliosis also and we had several opinions none of them asked us to get an MRI done. I think maybe because the kind of curve he had was typical of AIS. One surgeon said he would do it if it would make us feel better but did not think it was necessary in our sons case.

    As for finding a doctor, scoliosis research society is a good starting place they can give you information about doctors in your area. You should be able to find them with a google search. It's very helpful to have a second opinion. Good luck with everything. It is a roller coaster but you have found a great place for helpful information.

  10. #10
    Join Date
    May 2012
    Posts
    4

    Finding a Surgeon

    Thank you for your kind support. Knowing it gets better is very comforting I will look at that website. Is the treatment different if the scoliosis is not typical?

  11. #11
    Join Date
    Aug 2009
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    1,164
    Some treatments work differently with kids with congenital scoliosis - bracing, for example, is felt to be ineffective for these kids, since they have mispshapen or fused vertebrae. Surgery may be a little different, again since the curve tends to be a little stiffer. But, there are effective treatments for all kids, no matter what causes the scoliosis. As proof of this, the forum is full of concerned parents, but I rarely see a teen on here and, when I do, they seem uniformly upbeat. So, it's awful for us, but the kids all seem to do fine.

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