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Thread: latest x ray: no progression

  1. #1
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    May 2011
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    Talking latest x ray: no progression

    Can't believe it! We've not moved since December. Still sitting at 41 thoracic and 26 lumbar. We've been progressing 1 degree a month (braced) since we were diagnosed and even in brace. This latest x ray shows no movement at all. Stunned! DD14 also got her first period and grew three inches since last May, so we are hoping we have slowed/stopped.

    Dr ordered new brace (old one is too small) and said the goal is to keep her under 50 while she's growing and monitoring her after she's done growing (to see if it progresses). 50 degrees or progressing after skeletal maturity would mean surgery. He said she's in the surgical gray zone right now. She seems to have little discomfort out of brace (three days out for x ray) which is a nice change.

  2. #2
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    Hi,

    Wonderful news! You must be thrilled. It sounds like she may be on the home stretch---it would be great if she could avoid surgery.

    Since she now has her period, did the doc say how much longer the brace would be needed?

    Thanks for sharing the news,
    Gayle, age 50
    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)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

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

  3. #3
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    May 2011
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    Yes he did. He said that she would need to wear the brace for at least one more year. He wants her to come back and have another x-ray three months after she is in the new brace.

  4. #4
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    Mar 2010
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    Cello_mom,
    This is amazing news for your daughter. I'm sure she's happy. She's sitting pretty close to where I was when I was first diagnosed, after menarche. I never wore a brace, am in my 40's with a similarish curve size to begin with, and have had no major progression (still in the 40*'s). Maybe she'll squeak by with no surgery like I did. I hope the new brace is more comfortable for her.
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  5. #5
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    May 2011
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    That would be wonderful!

    I have offered her the option of only wearing the brace at night for just the week of sleep away camp this month. She has been wearing it non stop (she's 100% compliant+) since she got it. I decided to play Dr. mom that she would be *safe* for one short week and be allowed to wear cute clothes and shorts that she has longed for. She can always put it back on, but I thought we might just be lenient this one time.

  6. #6
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    Mar 2010
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    Just out of curiosity, what age was she diagnosed and with what degree?

    I was diagnosed with AIS at age 16. I think I really have JIS because I started having back pain at age 8. In fact, I remember formulating a stretch that I would do every morning while lying on my right side. It would relieve the achiness and I could fall back to sleep for a little bit. I just wish that stretch worked now! ;-) My curve was noticeably large to me by the time I was about 12, maybe as early as 11. I remember being in junior high (I skipped a grade so was a year younger, 11 for 7th grade and 12 for 8th). So I can only guess that the curve was there prior to 10 years of age. I also had late onset menarche. I started the summer before my sophomore year in high school (talk about embarrassing!). I thought I would be a "little girl" forever!

    So the reason I ask is because, despite some progression "in brace", I've read here on the forum that bracing works much better in JIS than in AIS. I've also brought up the issue many times the question of how they know who's JIS and who's AIS. It's basically determined by the age of diagnosis. To me that's a bunch of bologna! So someone like me is diagnosed "late" and that puts me in the AIS category? It doesn't seem right to designate curves that way because JIS responds differently to treatment. Or it may be that those caught late don't respond well to treatment because of their age, so whether it's JIS or AIS doesn't really matter?

    I'm rambling with my thoughts, sorry. Whether your daughter is JIS or AIS, the bracing seems to be working. It held her through a tremendous growth spurt and THAT is AMAZING news!

    Take care. =)
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  7. #7
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    Quote Originally Posted by cello_mom View Post
    Can't believe it! We've not moved since December. Still sitting at 41 thoracic and 26 lumbar. We've been progressing 1 degree a month (braced) since we were diagnosed and even in brace. This latest x ray shows no movement at all. Stunned! DD14 also got her first period and grew three inches since last May, so we are hoping we have slowed/stopped.

    Dr ordered new brace (old one is too small) and said the goal is to keep her under 50 while she's growing and monitoring her after she's done growing (to see if it progresses). 50 degrees or progressing after skeletal maturity would mean surgery. He said she's in the surgical gray zone right now. She seems to have little discomfort out of brace (three days out for x ray) which is a nice change.
    Wow that's great news! There are certainly testimonials to people getting to that angle and beyond who did not progress further for decades.

    My one daughter who wore a brace had periods of progression and stability in and out of the brace. Brace wear seemed irrelevant to whether or not her curve was moving. She had a Charleston and was 100% compliant because she thought it would work.

    There is reason to hope. 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."

  8. #8
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    Quote Originally Posted by rohrer01 View Post
    Or it may be that those caught late don't respond well to treatment because of their age, so whether it's JIS or AIS doesn't really matter?
    This is the most logical reason I have ever seen suggested for why surgeons do not do more to rigorously differentiate between JIS and AIS given the vastly different responses to conservative treatments observed. I bet that is the real reason. Until now it was a total mystery to me.

    Thanks.
    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 cello_mom View Post
    That would be wonderful!

    I have offered her the option of only wearing the brace at night for just the week of sleep away camp this month. She has been wearing it non stop (she's 100% compliant+) since she got it. I decided to play Dr. mom that she would be *safe* for one short week and be allowed to wear cute clothes and shorts that she has longed for. She can always put it back on, but I thought we might just be lenient this one time.
    That's wonderful news for your daughter!!!

    For what it's worth, I agree with your logic about letting her ditch the brace for a week of camp. I've heard doctors say that in the grand scheme of things, as long as you're compliant over the long haul, a few days or even a week once in a blue moon isn't going to make or break the success of the bracing. They site instances of a child getting the flu, etc. where they need to be out of the brace for several days. I have rarely heard a doctor say that a child shouldn't be given a break so long as they are few and far between; and it sounds to me like your daughter has really earned this break :-)
    Last edited by mariaf; 06-15-2013 at 08:33 AM.
    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/

  10. #10
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    Hi cello_mom,

    I also agree completely about letting her ditch the brace for the week of camp.. These small concessions are so important to their overall acceptance of wearing the brace, and I think it really important to balance brace wear with allowing them to have a normal childhood once in a while on special occasions. I do not think one week will matter one bit. After all, her doc calls for several days out of brace before x-rays, so really it is just the same as that. She will be fine!
    Gayle, age 50
    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)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

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

  11. #11
    Join Date
    May 2011
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    76
    Quote Originally Posted by rohrer01 View Post
    Just out of curiosity, what age was she diagnosed and with what degree?
    She was diagnosed at 12 years old and she was at 22 thoracic and 18 lumbar I believe. She progressed like a clock one degree every single month until just last December. She started wearing the brace at 13 (last January).

  12. #12
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    May 2011
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    Thanks everyone! Today we went to Kohls and got some cute shorts and some tops that don't look maternity. I had no idea what size she wore really since everything has always been so large on her. I am going to see if there is any way we can get the new brace adjusted so she can wear normal pants (not over the brace but under). She has always complained that pants worn under dig into her skin painfully, or get pushed down at the waist band because of how the brace sits on her hips. Maybe we can do something better this time.

    We have our new body casting for the brace next Tuesday morning. There goes my insurance deductible. Last time it cost me $2000!

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