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Thread: Rigo-Cheneau update for G

  1. #16
    Join Date
    Oct 2008
    Posts
    299

    check-up

    Had the next 6 month interval check-up, clinical exam only. No observable change, so no x-ray. (FYI, the clinical exam first, x-ray only if doctor deems necessary is not standard protocal but at our request.) Next appointment in 6 months. Will have an x-ray at that time. So after a full year of reduced bracewear, things still look good. We go on.
    mamandcrm

    G diagnosed 6/08 at almost 7 with 25*
    Providence night brace, increased to 35*
    Rigo-Cheneau brace full-time 12/08-4/10
    14* at 10/09 OOB x-ray
    11* at 4/10 OOB x-ray
    Wearing R-C part-time since 4/10
    latest OOB xray 5/14 13*
    currently going on 13 yrs old

    I no longer participate in this forum though I will update signature from time to time with status

  2. #17
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,161
    Hi Chris,

    This is wonderful news, and I am so glad to hear G can continue with the reduced wear. I am sure she is thrilled! And good job on minimizing the x-ray exposure.

    Leah will be one year post-op VBS in May, so hopefully we will have some good news to report as well.

    Take care,

    Gayle
    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. #18
    Join Date
    Mar 2009
    Posts
    1,090
    Great news mamandcrm! :-)

  4. #19
    Join Date
    Aug 2007
    Posts
    388
    Good news mamandcrm!

    Gayle, I look forward to your post in May which should have more good news!
    daughter, 12, diagnosed 8/07 with 19T/13L
    -Braced in spinecor 10/07 - 8/12 with excellent in brace correction and stable/slightly decreased out of brace curves.
    -Introduced Providence brace as adjunct at night in 11/2011 in anticipation of growth spurt. Curves still stable.
    -Currently in Boston Brace. Growth spurt is here and curves (and rotation) have increased to 23T/17L

  5. #20
    Join Date
    Oct 2008
    Posts
    299
    Hi Jill, Gayle, and Ballet Mom, thanks.

    Jill, how is your daughter doing? Is she 11 now? Gayle, I look forward to hearing about Leah's recheck! It seems like we are all starting to get to the scary age when they really start growing and all heck can break loose (and I suppose there are other reasons it's the scary age too )
    mamandcrm

    G diagnosed 6/08 at almost 7 with 25*
    Providence night brace, increased to 35*
    Rigo-Cheneau brace full-time 12/08-4/10
    14* at 10/09 OOB x-ray
    11* at 4/10 OOB x-ray
    Wearing R-C part-time since 4/10
    latest OOB xray 5/14 13*
    currently going on 13 yrs old

    I no longer participate in this forum though I will update signature from time to time with status

  6. #21
    Join Date
    Apr 2008
    Posts
    172
    That is so great!!! I wish that Halle did as well with the Cheneau Brace.
    Marlowe mom to Halle (age 11)
    Diagnosed January 11/08
    In Spinecor Brace for 2 1/2 years

    In the Cheneau Brace for 10 months
    Being treated at Sick Kids Hospital - Dr. Reinhard Zeller

    Surgery Scheduled at Sick Kids for May 16, 2011


    http://hallesscoliosis.blogspot.com/

  7. #22
    Join Date
    Nov 2010
    Location
    San Diego, CA
    Posts
    104
    Congratulations mamandcrm and G!
    Resilience

    treated w Milwaukee Brace FT for 3 yrs
    currently 46 with 35 LL and 40 RT curves

    8 yr old diagnosed w Scoli 8/10 with 27 LL and 27 RT
    11/10 TLSO Full Time
    4/11 22 LL and 24 RT on waiting list for VBS at Shriners Phila
    12/11 curves still in the 20s but now has some rib cage changes from the brace
    VBS 4/25/12 with Dr. Samdani. Pre Op: 29 RT and 25 LL Post Op: 17 RT and 9 LL
    10/13: 15 RT and 10 LL

  8. #23
    Join Date
    Oct 2008
    Posts
    299

    More Good News

    Hi All. G just had a new x-ray (it's been a year), and her curve is measuring at 10*. She has continued to wear the Rigo-Cheneau brace 10-12 hours a night. I don't keep close track of her height but she grew over an inch just in the last 3 months. She'll have a clinical exam again in 6 months, and we'll only do an x-ray then if it looks like there is change. She is so straight now, it would be easy to see.
    Last edited by mamandcrm; 10-04-2011 at 01:59 PM.
    mamandcrm

    G diagnosed 6/08 at almost 7 with 25*
    Providence night brace, increased to 35*
    Rigo-Cheneau brace full-time 12/08-4/10
    14* at 10/09 OOB x-ray
    11* at 4/10 OOB x-ray
    Wearing R-C part-time since 4/10
    latest OOB xray 5/14 13*
    currently going on 13 yrs old

    I no longer participate in this forum though I will update signature from time to time with status

  9. #24
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,903
    Wow that is great news! Fabulous.

    JIS certainly appears to respond to bracing. That's what Dr. Hey said in the one blog entry. I wish they would study that more to rule out spontaneous improvement. I wonder if anyone has ever seen a 35* JIS curve spontaneously improve. If not then the brace was effective.

    Congratulations.
    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. #25
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,161
    Hi Chris,

    Congratulations on more wonderful news! I am sure you are all thrilled.

    Leah will turn 10 in January and she has been growing like crazy the last 6 months (2-3 inches during that time). So far, so good...her next x-ray is May 2012.

    Thanks for sharing the good 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

  11. #26
    Join Date
    Aug 2007
    Posts
    388
    Wonderful news! Thanks for sharing.
    daughter, 12, diagnosed 8/07 with 19T/13L
    -Braced in spinecor 10/07 - 8/12 with excellent in brace correction and stable/slightly decreased out of brace curves.
    -Introduced Providence brace as adjunct at night in 11/2011 in anticipation of growth spurt. Curves still stable.
    -Currently in Boston Brace. Growth spurt is here and curves (and rotation) have increased to 23T/17L

  12. #27
    Join Date
    Nov 2010
    Location
    San Diego, CA
    Posts
    104
    Such wonderful news! So happy for you and your daughter!
    Resilience

    treated w Milwaukee Brace FT for 3 yrs
    currently 46 with 35 LL and 40 RT curves

    8 yr old diagnosed w Scoli 8/10 with 27 LL and 27 RT
    11/10 TLSO Full Time
    4/11 22 LL and 24 RT on waiting list for VBS at Shriners Phila
    12/11 curves still in the 20s but now has some rib cage changes from the brace
    VBS 4/25/12 with Dr. Samdani. Pre Op: 29 RT and 25 LL Post Op: 17 RT and 9 LL
    10/13: 15 RT and 10 LL

  13. #28
    Join Date
    Oct 2008
    Posts
    299
    Thanks, all. I feel like she now has made it safely through the growing rods minefield, and we go on now to adolesence and whatever that will bring. Our next hope is to get her safely to maturity without needing any surgery or full-time bracing. She has been a star throughout this whole process. It has been so valuable to me to be able to have this time where the pressure and worry has lifted, to be able to educate myself without the panic I felt at the beginning over 3 years ago.
    mamandcrm

    G diagnosed 6/08 at almost 7 with 25*
    Providence night brace, increased to 35*
    Rigo-Cheneau brace full-time 12/08-4/10
    14* at 10/09 OOB x-ray
    11* at 4/10 OOB x-ray
    Wearing R-C part-time since 4/10
    latest OOB xray 5/14 13*
    currently going on 13 yrs old

    I no longer participate in this forum though I will update signature from time to time with status

  14. #29
    Join Date
    Aug 2011
    Location
    Wales
    Posts
    248
    Quote Originally Posted by mamandcrm View Post
    Thanks, all. I feel like she now has made it safely through the growing rods minefield, and we go on now to adolesence and whatever that will bring. Our next hope is to get her safely to maturity without needing any surgery or full-time bracing. She has been a star throughout this whole process. It has been so valuable to me to be able to have this time where the pressure and worry has lifted, to be able to educate myself without the panic I felt at the beginning over 3 years ago.
    I feel your deserved pride, your daughter is a star. Inspiring. Thanks for sharing.
    07/11: (10yrs) T40, L39, pelvic tilt, rotation T15 & L11
    11/11: Chiari 1 & syrinx, T35, L27, pelvis 0
    05/12: (11yrs) stopped brace, assessed T&L 25 - 30...>14lbs , >8 cm
    12/12: < 25 LC & TC, >14 cms, >20 lbs, neuro symptoms abated, but are there
    05/13: (12yrs) <25, >22cms height, puberty a year ago

    Avoid 'faith' in 'experts'. “In consequence of this error many persons pass for normal, and indeed for highly valuable members of society, who are incurably mad...”

  15. #30
    Join Date
    Oct 2008
    Posts
    299

    I haven't posted in a couple years...

    For those of you who are are in the early onset JIS world, my daughter is almost 13 and while she is not at maturity yet, it appears bracing has been a success for her. Her 35* curve at age 7 has held under 15* out of brace for almost 6 years, with one 16-month stint of full-time bracing at age 7-8, and the remaining years night-time only. She is now post-menarchal, has shot up significantly in the last year, and in her doctors opinion probably through her most intense period of growth, and on her last brace (which we just picked up). Bracing has always been OK for her, not presenting any physical or emotional problems. So that's the report, and I won't appear again except to modify my signature when she is done with her treatment.
    mamandcrm

    G diagnosed 6/08 at almost 7 with 25*
    Providence night brace, increased to 35*
    Rigo-Cheneau brace full-time 12/08-4/10
    14* at 10/09 OOB x-ray
    11* at 4/10 OOB x-ray
    Wearing R-C part-time since 4/10
    latest OOB xray 5/14 13*
    currently going on 13 yrs old

    I no longer participate in this forum though I will update signature from time to time with status

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