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Thread: Providence brace

  1. #1
    Join Date
    Jan 2008
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    Oregon
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    Providence brace

    Our 6 y/o daughter was recently diagnosed with a 30 degree thoracic curve. We finally saw the pediatric orthopedist last week, who by the way is a pediatric scoliosis specialist listed on the Scoliosis Research Society's physician list. We have done a lot of research on our own, but the doctor really didn't give us any info about the "big picture" of how this will likely affect our daughter. He said we could observe her for 6 months, he mentioned casting, and he suggested a Providence night time brace if we wanted to brace her now. He didn't seem to think there was any hurry to brace her. When I finally pressed him, he said he is sure she will need surgery in the future (fusion or growing rods), so it seemed that he felt like it's no big deal to just let her go until she needs a major surgery. Does anyone have any experience with the Providence brace? We have concerns about bracing due to possible rib/chest wall deformities caused by the brace, and about the long course of bracing that our daughter would face. We live in Oregon, so SpineCor is not an option. I wore a Boston Brace myself for two years as a young teenager, and really hated it, so I am personally biased against bracing for my own daughter. I felt the doctor was a little unkind when he told me that I am letting my negative experience with my brace color my opinions about my daighter's treatment. Those years in a brace affected me deeply, and the experience is a part of me now, like it or not.
    We have also been actively researching VBS and have an evaluation with Dr. Betz in Philadelphia in a couple of days (no flames please). We have high hopes for this treatment.
    If anyone has any experience with the Providence brace we would love to hear about it, especially in younger JIS patients.

    Thanks, Gayle
    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

  2. #2
    Join Date
    Jan 2008
    Location
    Connecticut
    Posts
    53
    Hi Gayle,

    My daughter wore a Providence Brace when she reached 25 degrees for about 6 mos at age 13. It was the first step her doctor wanted to take as it is less invasive than a Boston brace because it is only worn at night. After 6 months of wearing the Providence brace, night time only, it was determined that it was not holding the curve and she needed to be braced full time and was fitted with the Boston brace. She wore the Boston brace faithfully for about 3 years. That unfortunately did not help either and she got progressively worse. She had surgery about 6 weeks ago at age 17.

    At times I feel that she went through the emotional turmoil of being a teenager in a brace for nothing. It was a waste. On the other hand, I can't regret my decision as I believe the brace helps 70% of those who wear it. It was a chance we needed to take.

    Did the doctors ask you when your curve started and what degree you are now. (I have a about a 25 degree curve myself) You say that you wore the Boston brace. I take it that it was successful in stopping your progression? That might be a good sign. but given the fact that your daughter is so young and already is 30 degrees the VBS might be a good option.

    Best of Luck,
    Michele
    Samsmom
    Mom to Samantha, Age 17

    64 Degree Thoracic Curve
    42 Degree Lumbar Curve
    Fused T-4 to L-2
    Yale New Haven
    2/5/08

  3. #3
    Join Date
    Nov 2007
    Location
    Houston, TX
    Posts
    1,757
    Hi, Gayle ...

    I suspect you'll get a lot more support here than flames over investigating VBS and Betz ;-). Several moms on here can fill you in on the successes their kids have seen with VBS.

    It also sounds like with an almost certain Risser of 0 (at age 6), and 30/15 curves, your daughter falls into what is considered the "ideal candidate" category. Not to step on anyone's toes, but hopefully she IS, and they can get her stapled and *no* brace will be required.

    ( ... you can see from my signature I was a braced child, so perhaps I'm a *tad* biased on this promising option not available in 1979 ;-)

    I don't know if you've seen the stapling site Amanda put together (they recently moved from their Yahoo groups home), but the address is http://www.vertebralstapling.com. Lots of good info, success stories, and a wonderful group of parents/former patients to answer your questions about both the surgery itself and Philly.

    Best of luck on your consult. I hope this is an option for y'all!

    Best regards,
    Pam

    P.S. - Incase you haven't seen it, Cara put together a vertebral stapling awareness video that'll make you leak. Guaranteed. (awesome job, Cara!)
    Fusion is NOT the end of the world.
    AIDS Walk Houston 2008 5K @ 33 days post op!


    41, dx'd JIS & Boston braced @ 10
    Pre-op 53, Post-op < 20
    Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


    VIEW MY X-RAYS
    EMAIL ME

  4. #4
    Join Date
    Aug 2007
    Posts
    388
    Hi Gayle, Hi - I've seen you over on the VBS boards - we don't have experience with the providence, but when my daughter was first diagnosed, I called to the Shriners in Portland where one of the inventors of the Providence brace is now located. Based upon an over the phone conversation they didn't think she'd be a great candidate for the Providence brace because of her age (6 at the time). They thought she'd probably need 23 hour bracing (we didn't fly out there so she wasn't examined by the to get a definite answer). The other thing they mentioned which another doctor had said, is that the Providence seems to do best with the lower curves (i.e. lumbar and to a certain extent thorolumbar) That doesn't mean that it won't work for someone with a thoracic curve - just that the success rate isn't as good. So even if my daughter (who has a primary thoracic and compensatory lumbar) was older, she still wouldn't have been an ideal candidate given the placement of her curve. It sounds like some of those same issues might apply in your daughter's case? Maybe it wouldn't hurt to call Dr. D'Amatos assistant in Portland to see what they think - I'm guessing they must have more experience with the Providence brace than most other doctors. (when I called I was told Chris at 503-944-1170 was his assistant)

    How annoying that the doctor commented that your brace wearing experience colors your attitude. Duh! Of course it does! As somebody who wore a brace, you are entitled to your attitude based upon first hand experience!

    Anyway, we share your concerns about chest/rib deformities with extended brace wearing and it's hard to know what to do. Some doctors we met with also thought we should just observe and although they didn't come out and say it, I'm pretty sure its the same reason as your doctor's...because they assume she will ultimately require fusion anyway so why put her through the brace. On the other hand, my daughter is young like yours, so even if she does require fusion ultimately, I would like to delay curve progression as much as possible. This will give her spine more time to grow. Also I fear that if she progressed to quickly she would have to go through all the multiple surgeries associated with growing rods and ultimate fusion.

    My daughter's thoracic curve was diagnosed about 10 degrees smaller than your daughter's so at this point her curves are a little to small to qualify for VBS, but should her out of brace curve progress I would seriously consider VBS...

    Good luck with your decision making process!
    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. #5
    Join Date
    Aug 2007
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    388
    Actually, it just occurred to me (from your posts on VBS forume) that you are from the Oregon area so maybe it was the Portland Shriners you were in touch with already....but if not, maybe you could even physically get in and see them?
    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

  6. #6
    Join Date
    Sep 2005
    Posts
    195
    Gayle,

    Has your doctor referred your daughter for an MRI of her spine? If not then you should request it. Is the doctor 100% sure that this is idiopathic scoliosis? My daughter had a 28 degree curve at 5, that was caused by neurological issues. Dealing with those issues has kept her stable for almost four years now. She is now wearing a Spinecor Brace, but that was not as per my ortho, it was my decision to try to reduce the curve prior to adolesence. The jury is still out on whether it is worth the effort, but that is another issue. Please request the MRI.
    Emily's mom-11 1/2 years old
    28 degree scoliosis 9/04
    Chiari Malformation/SM decompressed 11/04
    17-24 degrees 11/04-6/07
    Wearing Spinecor Brace since June 07
    3/31/10- 29 degrees oob
    11/18/09 17 degrees in brace

  7. #7
    Join Date
    Jan 2008
    Location
    Oregon
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    1,160
    Thanks for the helpful replies above. We just got back from Shriner's in Philly a couple of days ago, so I'm catching up now.

    Our daughter did have an MRI last month, which was normal, so at least we don't have to worry about that.

    Jill, I think Leah's situation may be similar to Katie's. Her curve is primary right thoracic with an apex about T9. Her lumbar curve is compensatory, so we were told to not worry about that. When Dr. Betz saw her, her original x-ray was re-measured down to 26 degrees, and now, two months later, it is unchanged. I researched the Providence brace online, and saw as you mentioned that is has better results on the lumbar curves. The stats for thoracic curves were not that encouraging, something like 65% (or less) effective. So I don't think we will pursue that option. We were originally attracted to the possibility of a night-time only brace.

    Sorry for the repitition for those reading the VBS list also. Dr. Betz wants to observe Leah's curve very closely in a part-time boston brace, with x-rays every 3 months. She will need to wear the brace 16 hours a day, so at least she can go to school without it. Leah can be a high-maintenance little girl, who is not very tolerant of small discomforts like scratchy clothes, etc. So I just don't know how well she will adjust to the brace, but maybe she will surprise us.

    Dr. Betz wants to see if the curve is progressive before proceeding to VBS, to avoid any risk of overcorrection, while controlling the curve with the brace so it can't shoot up too quickly if she starts to progress. We very much want to avoid growing rods, and if we could ultimately avoid fusion we would be very happy. Jill, it sounds like Katie's curve is not progressive currently, am I right? If so, what is the long-term outlook for treatment? At some point can bracing be discontinued?

    Leah's care is being transferred to Shriner's Portland for now, which is about 90 minutes by car away from our home. This is not where she was seen originally. We feel satisfied with Dr. Betz's plan. It's hard, though, to have a child with a spinal deformity requiring medical care and uncertainty that will be a part of their entire childhood, since scoliosis can't just be treated and cured.

    Gayle
    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

  8. #8
    Join Date
    Aug 2007
    Posts
    388
    Leah, I saw your posting on the VBS board also but didn't have a chance to respond. It sounds like you got a good plan to work with - and I also found their thoughts on wanting to see progression first or letting her grow another year very interesting. What I like about Dr. Betz and co is that they don't seem to have a one size fits all approach. You are right that Leah and Katie are in very similar situations.

    I don't really know if Katie is progessing yet since I have limited information. She was diagnosed in late August and her last "pre brace" xrays in mid October showed a curve a couple degrees higher. Given that the xrays were taken at a different place and read by a different doctor, it is well within the "margin of error" - maybe she progressed slightly or maybe its just the margin of error. In brace, her curve reduced and we go back next month for the next in brace xray. I feel that will be a telling xray because 5 months will have passed and she has definitely grown in that time period (whereas she hadn't really grown between August and Oct). It seems like she is starting to "outgrow" the current fitting of the brace so I hope that doesn't cause trouble (if it is the case).

    They say that spinecor needs to be worn for at least 2 years. If Katie was older and had maintained smaller curves for that time frame, they might start to wean her off the brace. However in Katie's case, in 2 years she would be 9 years old and just starting or about to start that period of rapid spine growth so they would most likely require her to continue wearing the brace since that is a dangerous period. While the doctors do say there is a chance somebody who is young curves might not progress, I think they all realize that it is highly unlikely they will finish growth without progression. I did see one person post here who's young daughter's curves did actually regress! She still has many years of growth left, though, so I'm hoping that in the years to come we hear that her daughter's curves held.

    We haven't gone to Philly yet, but they are our Plan B. I did speak to Janet at Shriners for some time when Katie was diagnosed and she said that Katie's curve (at 19 degrees) was too small for VBS, but that if she progressed to 25 degrees they would consider her.

    Is Dr. D'Amato the person at Shriners Portland that they referred you to? It's great that the two doctors will work together .
    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

  9. #9
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,160
    Hi Jill,
    There are two pedi scoliosis specialists at Portland Shriner's: one is Dr. D'Amato, who is the one you talked to I think, and the other is Dr. Kraibich. Dr. Betz suggested the latter, I think because he is Chief of Staff at Portland, but I reviewed their credentials, and I am sure either would be fine.

    The part about trying to buy Leah a year of growth was interesting to us, too. Dr. Betz told us they don't have as much data on 6 y/olds, but have quite a lot of experience with VBS in the 7-10 y/o age group. He told us all kids experience a growth spurt somewhere between age 5 and age 7, but you never know when it will be. He felt if Leah's curve continues to be non-progressive until she is 7 then the risk of over- correction (a curve forming in the other direction) from VBS will become a non-issue, as we understand it. If she progresses while in the boston brace, then the worry about possible over-correction is removed. And also, then I guess we would know that a conservative approach failed to avoid surgery.
    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

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