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Thread: I'm back... DD's curve is now at 41

  1. #1
    Join Date
    Feb 2007
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    I'm back... DD's curve is now at 41

    It has been awhile since I posted. Oldest DD's scoliosis stopped at around 32-34 (but she'll continue to get checked annually). Youngest DD (age 16) went for check-up today. She sleeps in a night brace (she loves it!). She is supposed to NOT wear the brace for 3 days before her check-up.. but she/we forgot.. so it is possible her real "out of brace" curve reading of 41 today could be higher. Progressed from 37 six months ago. She is a late bloomer, bone age has always run behind actual age.

    We're going back at the end of January. I worry that surgery may be in our future. How long is the recuperation period for lumbar surgery fusion? Is that what is typically done? Ugggh, I know nothing and feel I need to prepare.
    Last edited by Hanaliy; 10-23-2012 at 08:29 PM. Reason: added sentence

  2. #2
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    Apr 2012
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    155
    One year. Keep in mind that I'd she will be operated on the lumbar area she won't be very flexible because u bend in the lumbar. She will see her surgeon everyday in the hospital, a month after surgery, three months after surgery, 6 months after surgery(she will be back to normal but will still be restricted. She can't go on roller costers, play tackle football, etc), and 1 year after surgery and she can do what ever she wants.
    "You never know how strong you are, until being strong is the only choice you have."~Bob Marley

    “There is something beautiful about all scars of whatever nature. A scar means the hurt is over, the wound is closed and healed, done with.”~Harry Crews

    3+ years post op
    Fused T4-L1
    Pre-op curve: 64*
    Now no more than 15*

  3. #3
    Join Date
    Apr 2012
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    155
    Can u post her xrays? I can tell u were she will be operated most likely. The surgeon will drill holes in her spine and place screws and rods. He will add a little lordosis so she will have perfect posture. Surgery isn't that bad believe me! I was worrying about my mom before surgery
    How she will react. Paralysis is rare there r more chance to get striked by lighting than to be paralyzed. If her scoliosis is slow and doesnt progress in length I suggest wait until she's 18 when she's fully developed. Go to a children's hospital because the staff is used to seeing this surgery believe me! Does she have lordosis, kyphosis, flat back,etc? I wanna be a pediatric orthopedic spinal surgeon for spinal disorders. Or a neuro surgeon when I get older I wanna get a head start in life so I study the spine even now. I plan on shadow my surgeon soon and may be see him operate on a pateint(if he will let me) if u have any questions I'm right here!
    "You never know how strong you are, until being strong is the only choice you have."~Bob Marley

    “There is something beautiful about all scars of whatever nature. A scar means the hurt is over, the wound is closed and healed, done with.”~Harry Crews

    3+ years post op
    Fused T4-L1
    Pre-op curve: 64*
    Now no more than 15*

  4. #4
    Join Date
    Feb 2007
    Posts
    13
    The "sport" she likes is aerial silks. Its yoga and gymnastics in the air (ex: www.theskygym.com) She just started it this past year. She's worried that if she has to have surgery then she won't be able to do that anymore b/c it is all about bending and stretching.

    I have her Xray at work. Will try and post it next workday - but not completely sure how to post. I don't know what other diagnosis she may have. I really have stuck my head in the sand, have not asked any questions and am not familiar with the terminology. Now I feel I need to get educated quickly. Better to be prepared even it things work out for the best. So all information will be appreciated.

  5. #5
    Join Date
    Apr 2012
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    155
    DO you know her risser number? I used todo gymnastics but my surgery was recent so I will fiNd out my flexibility soon. I can't really say anything untiL I see her X-rays. I
    Would be worried about that too. I have a friend who is fused in the lumbar area I will ask her tomorrow. She had heR surgery in november 2011. If you don't have the xrays do u at least know the levels that is curved example I was curved around t4-l1 and i know this is personal but from how log did she have her umm......... Mensi I guess u can say. It has a HUGE impact in treatment. I have to got to
    Sleep and won't answer until tomorrow.

    Kat
    "You never know how strong you are, until being strong is the only choice you have."~Bob Marley

    “There is something beautiful about all scars of whatever nature. A scar means the hurt is over, the wound is closed and healed, done with.”~Harry Crews

    3+ years post op
    Fused T4-L1
    Pre-op curve: 64*
    Now no more than 15*

  6. #6
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,797
    Kat...

    Thanks for trying to help on this thread, but when you post, please mention your experience only. When you respond in the parents forum, it's quite likely that people probably will not know that you are teenager. I'm OK with you posting, but please just talk about your own experience as opposed to stating facts. Please understand that there can be a very large range of experiences, especially in terms of scoliosis surgery.

    Regards,
    Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

  7. #7
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    Quote Originally Posted by Hanaliy View Post
    It has been awhile since I posted. Oldest DD's scoliosis stopped at around 32-34 (but she'll continue to get checked annually). Youngest DD (age 16) went for check-up today. She sleeps in a night brace (she loves it!). She is supposed to NOT wear the brace for 3 days before her check-up.. but she/we forgot.. so it is possible her real "out of brace" curve reading of 41 today could be higher. Progressed from 37 six months ago. She is a late bloomer, bone age has always run behind actual age.

    We're going back at the end of January. I worry that surgery may be in our future. How long is the recuperation period for lumbar surgery fusion? Is that what is typically done? Ugggh, I know nothing and feel I need to prepare.
    Hi. I'm sorry about the progression.

    In re night-time braces and being out of brace before radiographs, my daughter wore a Charleston and I was told there is no need to skip even the night before to get an accurate reading the next day. Apparently they are not like the full time braces in that regard. I am not sure this applies to all night-time braces but I expect so.

    Also, three days out of brace is very thorough, let's say. Based on testimonials and reading I have done, 24-48 is more the norm I think. The longer out of brace, the more accurate reading but three days may be overkill in that regard.

    Are you saying her curve is in the lumbar? Most people with a surgical curve have a thoracic curves so that would be most "typical." Kids tend to bounce back very quickly... both of mine we back to school full time between three and four weeks post op which according to our surgeon is typical and is stated in the written material I was given.

    Good luck.
    Last edited by Pooka1; 11-01-2012 at 05:22 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."

  8. #8
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    Quote Originally Posted by Hanaliy View Post
    The "sport" she likes is aerial silks. Its yoga and gymnastics in the air (ex: www.theskygym.com) She just started it this past year. She's worried that if she has to have surgery then she won't be able to do that anymore b/c it is all about bending and stretching.

    I have her Xray at work. Will try and post it next workday - but not completely sure how to post. I don't know what other diagnosis she may have. I really have stuck my head in the sand, have not asked any questions and am not familiar with the terminology. Now I feel I need to get educated quickly. Better to be prepared even it things work out for the best. So all information will be appreciated.
    Deep breaths. Ask the surgeon what type of scoliosis she has and what levels are involved. He will probably say adolescent idiopathic which accounts for about 80% of cases in that age group I think. Then you can start your research. Is she very flexible or hypermobile by the way?
    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 Kat3573 View Post
    DO you know her risser number?
    Hey Kat, the OP is all over the bone age - chronological age issue. It's covered.
    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."

  10. #10
    Join Date
    Apr 2012
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    155
    Quote Originally Posted by Pooka1 View Post
    Hey Kat, the OP is all over the bone age - chronological age issue. It's covered.
    Ohhhhhh..... Okay now I know! My phone sometimes randomly capitalize things so don't think I'm yelling XD
    "You never know how strong you are, until being strong is the only choice you have."~Bob Marley

    “There is something beautiful about all scars of whatever nature. A scar means the hurt is over, the wound is closed and healed, done with.”~Harry Crews

    3+ years post op
    Fused T4-L1
    Pre-op curve: 64*
    Now no more than 15*

  11. #11
    Join Date
    Feb 2007
    Posts
    13
    Sorry, I stuck my head in the sand and tried not obsess about this over the past couple of months. We go back to the spine doc on Tuesda - this time DD stopped sleeping in her brace on Friday, so I hope we'll get an accurate read.

    To answer some of the questions posted: Her scoliosis is idiopathic. She was diagnosed about 2 - 3 years ago. When she was young she was very very flexible, now not as much.. can't touch her toes or do a split anymore. She has two curves - one in the lower back and one up around the shoulder area, so hers is "S" shaped. Her hip has hurt some this past month, but am not sure it's related to the scoliosis. Will post an update after the doctor's visit on Tuesday.........

  12. #12
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    Jan 2008
    Location
    Oregon
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    Good luck Tuesday. Keep us posted.
    Gayle, age 49
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    5/10 VBS Dr Luhmann Shriners St Louis
    5/16 6 yrs post-op, 24*T/ 22* L, mild increase in curves, watching

    also mom of Torrey, 12 y/o son, 16* T, stable

  13. #13
    Join Date
    Feb 2007
    Posts
    13

    Great news!

    Our visit to the spine doc went extremely well today. This time DD was out of her brace for 4 nights before being X-rayed... and guess what? Her curves measured the same as the last visit - 41 degrees on lower curve and 27 degrees on top curve. Doc says her growth plates are almost closed, so we may be out of the woods, thank goodness! DD will continue to wear her brace. We go back in June. Doc wants her to stop wearing the brace for 4 weeks in advance of her next visit.

  14. #14
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    Quote Originally Posted by Hanaliy View Post
    Our visit to the spine doc went extremely well today. This time DD was out of her brace for 4 nights before being X-rayed... and guess what? Her curves measured the same as the last visit - 41 degrees on lower curve and 27 degrees on top curve. Doc says her growth plates are almost closed, so we may be out of the woods, thank goodness! DD will continue to wear her brace. We go back in June. Doc wants her to stop wearing the brace for 4 weeks in advance of her next visit.
    That's very good news about no progression despite still having growth remaining. Excellent.
    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."

  15. #15
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    ny
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    Excellent news, indeed!

    I'm so happy for you guys!
    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/

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