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Thread: Getting Started

  1. #1
    Join Date
    May 2010
    Posts
    49

    Getting Started

    I took my 11 year old daughter to Johns Hopkins today and we saw the PA Kristen Venuti. She diagnosed her curves to a greater degree than the local orthopedic surgeon who referred us to JH.

    She has a 20* curve up high, near her neck, a 25* curve in the upper back and a 17* curve in her lower back. Risser score of 0. She recommend wearing a brace 23 hours a day. She wrote the Rx for the Cheneau brace. We live in Northern Virginia pretty close to Orthotic Solutions.

    She's handling this remarkably well.
    Last edited by JessicaNoVa; 06-05-2010 at 09:49 AM.

  2. #2
    Join Date
    May 2010
    Posts
    49
    DD had her first in brace x-ray today. She's been wearing her RSC brace for two weeks now and is up to 23 hours a day. the results:

    Before brace:
    lumbar curve: 17*
    thoracic curve: 25*
    cervical curve: 20*

    After Brace:
    lumbar curve: 5* (whoohoo!)
    thoracic curve: 18*
    cervical curve: 20*

    We go back to the othotist in a week and he'll adjust her brace to try and reduce the 18* curve a little bit more.

  3. #3
    Join Date
    Dec 2009
    Location
    Mississippi
    Posts
    70

    Great news!

    I am glad the brace is working for her!!
    "With God All Things Are Possible"
    Mom to Mandy,age 11, surgery on Jan 14,2010
    to correct 51 degree T and 63 degree L curvatures.

  4. #4
    Join Date
    May 2010
    Posts
    49
    DD had her 4 month check up yesterday. Her curves, out of brace, were:
    lumbar curve: 7.5*
    thoracic curve: 17*
    cervical curve: 20*

    Her Risser score has moved up from 0 to 1 and the PA said she thinks she'll wear the brace for another 18-24 months. She told us that her curves will probably eventually go back to their pre-bracing levels but that those are small enough to not impact her life too much.

    I don't know - reading posts on here I'm thinking the brace is nothing more than a placebo at best, akin to middle age leeching at the worst.

    DD has a wonderful attitude about wearing it, though, so we'll continue.

  5. #5
    Join Date
    Oct 2009
    Posts
    89

    Back To Pre-Bracing Level

    Hi

    Did you get your brace at Orthotic Solutions? I have considered getting a Cheneau brace there for my daughter (9).

    I am surprised that they feel the curves will go back. My daughter is bracing (SpineCor and Broston braces) and I hope that we can reduce the curve, and it will stay there and not bounce back.

    I have heard that it is key to keep it under 30 degrees, but that it is best to get it down to 15 degrees or less to reduce the longer term impact and progression.

    I think the Cheneau brace is an excellent brace and I hope to have my daughter in it before her growth spurt (maybe around 11). She is 9 right now. Maybe get her into it now.

    But great results.

    Have you researched VBS for your daughter? Her original measurements made her an ideal VBS candidate. We visit Dr. Betz in Philadelphia at the Shriners Hospital. My daughter was once a VBS candidate but her curves have reduced and is no longer a candidate, but we still have her checked by them. Usually the best time for it is before the growth spurt, around 11 or so for girls. I just wanted to mention it, especially if you were feeling that the brace was only temporary.

    I have mixed feelings about bracing. There is so much research that says it does not work for adolescents. But I guess if it controls the curve through the growth spurt years, then maybe that is most important. Of course, this may be the hardest time for our daughters to wear a brace (11-14 yrs. old).

    However, with VBS, it is more like an internal brace for life. I like that idea. We were all ready for VBS and then told to do bracing because my daughter's curve was reducing (down from 36 deg to about 20 deg). But I have not seen a lot of studies on juveniles with 36 deg curves, down to 15-20 deg curve through bracing, that had no issues later in life (with the curve not progressing during adulthood). So, I feel bracing is a very big risk, especially if the spine returns to pre-brace levels. That would be 36 deg for us. Of course VBS is a risk too since it is surgery.

    Mike

  6. #6
    Join Date
    May 2010
    Posts
    49
    Yes, my daughter is in a RSC brace made by Orthotic Solutions. We didn't really look into VBS and since she's 11 and just had her first period, it's probably too late for her at this point.

    I think the point the PA was trying to make was that even if her curves don't stay this small, wearing the brace will help keep them from getting so large that they negatively impact her life.

    I'm hoping they'll stay small but I also know that surgery in her future is certainly not ruled out.

  7. #7
    Join Date
    Oct 2008
    Posts
    299
    Hi Jessica NoVa,

    It's so much harder when you are addressing multiple curves like your daughter has, particularly when the most significant is up high, which I think is a tougher nut. But it's great that, after 4 months, her lumbar is so improved and everything else holding steady. You are in good hands and your daughter obviously is working hard at this. Good for her, you must be very proud of her. Whatever comes to pass, she is doing an amazing job, and I wish her the greatest success. Hang in there, you just really never know what you might get. It sounds like your experience at Johns Hopkins has been a positive as well and that's good to hear.

    And, no, it's not too late for you to consider VBS. It is a procedure that may be appropriate for girls up to the age of about 13, but of course it depends on the particular child and diagnosis. If you are interested, you should look into it. Philly Shriners is an easy drive from NoVa. Your daughter's curves are low so she may not be a priority but it doesn't hurt to explore your options and get your foot in the door. I am a huge fan of the RC brace but we also consulted about VBS when G was at 35*, and if things had not turned out for us as they have, we would have continued to give it consideration (our daughter was adamant that she did not want the surgery, would rather wear a brace, a sentiment that we respected but also realized might change with time. Obviously for us it is backburned now).

    Anyway, congratulations on your great results so far and continued good luck
    Last edited by mamandcrm; 11-21-2010 at 04:47 PM. Reason: extra I forgot
    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

  8. #8
    Join Date
    Nov 2010
    Posts
    9
    Hi,
    I just had my daughter put in a rigo cheneau brace by orthotic solutions the other week. This is her first brace, she was just diagnosed with scoliosis that is border line surgery, her highest curve is 40. She has adjusted very well to wearing the brace. We haven't yet had in brace xrays as our dr at CHOP wants to do them 8 weeks after she's in the brace. That seems like a long time to go before checking the in brace correction?
    Our dr did not discuss her risser with us, in fact the only thing he really talked about was surgery. But she hasn't had her first period yet so I am hoping to get some correction, even though at her stage is problaly unlikely. She will be 11 in January, so I am sure there is a growth spurt coming. We will be combining this with Schroth, has anyone tried that with the RCS brace?
    Karen

  9. #9
    Join Date
    Oct 2008
    Posts
    299
    Hi KJD, we typically had our in-brace x-rays 1-2 weeks after picking it up. I suppose if it's a first-time brace, maybe 1-2 weeks more to allow her to get up to full-time first.

    I don't know why your doc is talking about surgery for an 11-year old with a 40* worst curve. That is not a severe curve. Maybe there is something else going on that is prompting the discussion now. Our surgeon told us she would not consider surgery before 50-55* for our daughter. I definitely would not jump into surgery before getting another opinion, perhaps at Shriners if you are in PA.
    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

  10. #10
    Join Date
    Nov 2010
    Posts
    9
    I have been hearing alot of talk about Shrinners on the message board, I want to see how she does in this brace and then I may try to see one of the doctors over there. We are just outside of Philly so wouldn't be a problem. The appointment we had at CHOP was her first appointment with an orthopedic surgeon. Her pediatrician noticed her scoliosis at a routine physical back in setp. She told me to get her to an orthopedic dr and gave me the number for chop and a prescription to have xrays done immediatly. I had xrays done that day, then again on Nov 2 which was the first available appointment for the Ortho surgeon, he also took xrays that day. If there is something else going on with her which is why he is talking surgery, he didn't mention it to us which you would think... he would. In fact, he examined both sets of xrays and told us there was no progression since the xrays in Sept. He also reccommended a boston brace but then implied it may not do any good, suggested she have surgery not immediatly but within the year. We left the dr in shock and of the mindset that we're going to wait a few months and see what happens. That night I started researching and realized there was no time to wait we had to do something now.

    There are so many people on this site that talk about needing facts and figures to prove this and that. To me, giving the RCS brace and schroth a try before surgery seems to be the common sense thing to do since surgery can not be reversed. If she is not in the percentage that benefit, so be it, at least she knows I tried.
    -Karen

  11. #11
    Join Date
    Oct 2009
    Posts
    89

    Some Additional Thoughts

    Just some thoughts on the conversation.

    My daughter is 9. Last year she was at 36 deg and is now down to somewhere around 18-20 deg. She is wearing a SpineCor and Boston brace. But while she was wearing the brace and doing some CLEAR treatment, we also visited Shriners in PA (Dr. Betz) to make sure we clearly understood our VBS options.

    I am doing everything I can to keep my daughter away from surgery, or postponing it as long as possible. However, VBS vs Spinal Fusion is very different in that VBS needs to be done sooner than later (before/during growth spurt) while Spinal Fusion is best to do as late as possible (spine as mature as possible).

    The key with VBS is that it is most successful with girls under the age of 13 and with curves 35 degrees or less. And if the curve is 35-45 degrees then a hybrid rod is added. So, the VBS options are driven by age and size of curve. And with the waiting period for surgery being several months, it is good to get in the schedule sooner than later, especially at Shriners.

    And if bracing works, then no need for it. But if bracing does not work, then there is a place in the schedule. For my daughter, at 36 deg, VBS with hybrid rod was recommended. Fortunately, 3 months after bracing she was no longer a candidate for VBS (even though I am thinking it may be best for her).

    It is important to make the distinction between VBS which is minimal invasive surgery vs spinal fusion. VBS has the potential of helping the curve with little to no impact on mobility.

    While my daughter is no longer considered a VBS candidate, I think it still may be the best solution, because there are no or very few studies to support bracing will hold her curve when she is 11-13 and goes through a growth spurt.

    So, just suggesting, may want to brace and meet with VBS doctors at the same time. VBS doctors will suggest bracing if it can postpone or prevent surgery. The doctor suggested bracing for my daughter to try and keep her from having to have surgery. And so far it has worked. But we have them keeping an eye on her to make sure she does not miss the VBS opportunity, especially when she reaches 11-12 years old.

    Good Luck

    Mike

  12. #12
    Join Date
    May 2010
    Posts
    49
    My daughter had her six month check yesterday. We went to Children's National Medical Center and saw Dr. Blakemore instead of going back to Johns Hopkins. I was very happy with Dr. Blakemore and we will continue seeing her.

    At JH, my daughter wore her brace right up until her x-ray. Dr. B had her out of it for 24 hours before her x-ray. Her results show her to be almost exactly where she was a year ago when she began wearing her brace. 17*L, 24*T, 22* C

    Her curves aren't progressing and we consider that good news.
    Mom to 11 year old DD who was:
    diagnosed 5/09: 8*L, 8*T
    braced 7/10: 17* L, 25*T, 20*C
    x-ray 11/10: 7*L, 17*T, 20*C (x-ray immediately OOB)
    most recent x-ray 06/11: 17*L, 24*T, 22* C (x-ray 24 hours OOB)

  13. #13
    Join Date
    Oct 2008
    Posts
    299
    Glad you had a good experience and the curves are stable!
    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. #14
    Join Date
    Nov 2010
    Location
    San Diego, CA
    Posts
    104
    congratulations on your daughter's curves holding stable. according to the medical literature, that is the goal with bracing!

    24 hours out of brace for an OOB X Ray is also the standard, to get a true measurement, according to all the articles that I've read.

    best wishes!
    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

  15. #15
    Join Date
    Aug 2007
    Posts
    388
    good news that she's holding stable out of brace!
    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

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