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Thread: JIS Recommended Treatment For 30+ Curves (Bracing VS VBS)

  1. #1
    Join Date
    Oct 2009
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    89

    JIS Recommended Treatment For 30+ Curves (Bracing VS VBS)

    This is similar to a thread I just started in Adolescent category regarding holding a juvenile curve reduction through the adolescent years. However, this one is more focused on the treatment options we have with our JIS children who have already reached 30+ deg (or others who are less than 30+ deg but showing significant curve progression). These options are primarily focused on bracing and VBS (vs other alternative/non-surgical methods).

    My daughter is 8 diagnosed Feb 2009 when she was 7 with a 23 deg curve. Then Oct 09 she was 36 deg. And at this point we started bracing and some other treatments. As of Mar 2010 her 36 deg (T4-T12) curve is reduced to about 24 deg but within the T4-T12, the T5-T10 curve measurement is about 28-30. It has remained consistent but I expect it to be less at our next x-ray.

    I have also seen several threads/posts of JIS children who were in there mid 30s and had their curves reduced to low teens. These were results with different braces (SpineCor, Rigo-Cheneau, and Boston). In each case there was significant in-brace correction.

    So, what are the options for all of us with our JIS children who have already reached mid 30s (or in 20s showing significant curve progression), which puts them at high risk of ongoing curve progression?

    Here are my thoughts:

    1. Do nothing (would not be my recommendation). But some doctors make this recommendation with the assumption that bracing has no impact on a curve that is high risk of progression.

    2. Brace full-time or part-time to hold it or reduce it. This would be bracing until maturity, maybe 6-8 years. That is a long time.

    3. Brace full-time or part-time to hold it until older, maybe 11-12 (maybe before significant growth spurt) then do VBS.

    4. Do VBS now as a juvenile and do no bracing (unless part-time bracing was required to help after VBS).

    And VBS is done for curves up to 35 deg and VBS/Hybrid Rod is done for curves up to 45 deg (generally speaking for thoracic curve). So, this is a decision we need to make while the curve is 25-30, or 25-35 deg. So we have to make it quickly if there is curve progression. However, successful bracing can give us some time to make that decision.

    One of the questions or concerns I have is that there are studies that show a curve can continue to progress up to 3 deg per year between the ages of 16-20 and up to 1 deg per year beyond the age of 20. So, a curve that is held in the low teens or 20s could continue to progress to the 30s and beyond over the years after maturity.

    So, if we assume no bracing after maturity (maybe age 15-16 for girls, 17-18/19 for boys) what solution is best right now for a JIS child who has already demonstrated to be a high risk for curve progression (i.e. mid 30s curve).

    Would VBS as a JIS or AIS (before growth spurt) be better in reducing the curve progression beyond maturity or would it have no impact?

    If it would impact the curve progression beyond maturity then VBS might be recommended for a JIS or AIS child, even if the child is willing to wear a brace to maturity.

    What is the best solution to control the curve progression after maturity? Has anyone seen any recommendations, studies, or have any experience? I assume with VBS we have very few children who have reached maturity and beyond to let us know whether VBS has impacted any curve progression beyond maturity.

    It would be unfortunate for a child to wear the brace until maturity (6-8 years) only to see the curve progress back to the mid 30s or higher when the brace was removed. I have read some threads/posts recently that this is exactly what happened to some people after wearing a brace for many years until maturity. Over time it eventually progressed back to the mid 30s and in some cases into the 40s and 50s and now they are considering spinal surgery (or maybe some type of adult bracing) to help with some pain and/or stop the continued curve progression.

    I am interested in any experience or studies around this subject for JIS children. I assume many parents are faced with this question of bracing, part-time or full-time (and which brace) but now also the question of VBS and when should it be done, especially if you are getting great results (significant curve reduction) with bracing.

    It would probably be best if the replies to this stayed focused on Bracing vs VBS and not other JIS alternative methods (which I do support, but would prefer to keep this focused on bracing and VBS).

    Thank You
    Michael

  2. #2
    Join Date
    Sep 2005
    Posts
    195
    I have gone back and forth with these issues for years. At this point in time there is not a RIGHT answer or a treatment that is best. Since there are no long term studies for JIS progression with VBS or reliable studies that show any type of bracing to be effective in holding these curves, it is up to parents to consider all of the options, get opinions from several doctors, and then detemine how much risk they are willing to take.

    In my case, my daughter had brain surgery at 5 right after the scoli,CM,SM were diagnosed. She has been adamant that she NEVER wants to have surgery again. So we have opted to try full time bracing with Spinecor instead of VBS. I refused to even attempt a Boston brace because I couldn't live with that. Up until this point it appears the Spinecor is working, but it very well could be that her curve has not progressed at all and the bracing is having no true impact. Her ortho told me not to brace her at all until recently. Now since she is a little higher cobb angle- 28 degrees (equivalent to initial baseline of 28 degree at age 5), he does tell me to keep her braced. He still classifies her a a non progressor because we have not surpassed the initial baseline yet. However, in the last five years we have been in the mid teens for long periods of time, so this 28 looks like it could be progressing to me.

    Your child is very lucky to have you advocating for her and trying to find a treatment that will work. Unfortunately, there is no guarantee with any of the current available options. Those of us in this situation have to chose the options that we are comfortable with and go from there.
    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

  3. #3
    Join Date
    Oct 2009
    Posts
    89
    Thanks

    You are definitely at that point that I am most concerned: a curve around 30 and beginning the growth spurt years (11-13). My daughter started with the SpineCor brace Nov 2009 when we learned she was 36. Then when we met with Dr. Betz Mar 2010 he suggested the Boston brace. So she wears the SpineCor brace to school and sports and the Boston brace at home and at night. She does not mind wearing the SpineCor. She does not care much for the Boston brace. However, she does get better in-brace correction with the Boston brace.

    Over the past year we have met with 4 pediatric orthopedic surgeons, 3 orthotists, and 3 chiropractors to learn about the different surgical options, bracing options, and other non-surgical treatments. This has been very helpful.

    So far we feel the bracing is working to help reduce the curve. We realize that curve reduction may only be possible during these JIS years. And we feel some of the other non-surgical treatments are working too.

    I know one of my concerns with the SpineCor is its ability to hold a progressing curve during the adolescent years, especially during the period of greatest growth (11-13). We are leaning towards full-time hard brace during this period of time (if we are still bracing). Maybe we will stay with part-time hard brace and part-time SpineCor brace if we have the curve into the teens or low 20s.

    So, one option is for us to do the same as you, and that is continue bracing to reduce/stabilize the curve until she is around 11. This is the point where I feel we have to make the bracing vs VBS decision. It is either full-time (possibly hard brace) or VBS (stapling only). VBS is normally recommended for girls less than 13. It sounds like it may be most effective if performed before any adolescent growth spurt.

    I have sent an email to Dr. Betz and his assistant to try and understand the pros and cons to having VBS at 8 vs 11. Assuming a person can stay below 30-35 deg during this period of time, I would like to know if there is an advantage of doing it now vs later? It will be interesting to see what he recommends.

    The good news is that we know for now we should focus on bracing and any other treatments that we feel can reduce the curve. I know in the past Dr. Betz has suggested that if a child can tolerate bracing that they should continue bracing. I assume he is going to tell us the same. And while she does not like the bracing, she does tolerate it. It is tough though. I watched her toss and turn almost all night last night (in the Boston brace).

    The other consideration is her rotation (approx. 15 deg) and rib hump. It is noticeable. I don't know whether we are going to be able to reduce it or stabilize it through bracing. I know some braces like the Rigo-Cheneau brace emphasize derotation. We have done some research on it and have talked to an orthotist about it. But maybe her rotation will influence the decision.

    Thanks again for your comments. They are very helpful. I wish you and your daughter all the best.

    Thanks
    Michael

  4. #4
    Join Date
    Mar 2008
    Posts
    19

    VBS Success

    My son was diagnosed with scoliosis at age 9. His curves were both around 16 degrees when first measured. Over the following year they continued to progress. When they reached 26 degrees the doctor said we needed to start some form of intervention because the curves were definitely progressing. We considered both bracing and VBS. He would need full time bracing for years if we went that route, potentially 6 years or more. After hearing the options my son voted for VBS surgery rather than bracing. We don't have any long term studies on VBS, but we felt the potential for success was great and worth trying. There have been plenty of studies that indicate that if you can keep the curves below 40 degrees at maturity the chance of progression goes way down.

    We had to make a decision quickly. My son was at a risser 0, but based upon his older brother's growth, we knew he was about to start his growth spurt. The studies have also shown that after 35 degrees the success rate for VBS drops. We did go ahead with the VBS knowing that a brace might still be in his future.

    The surgery was at the begining of summer and he was totally healed and cleared for all activities (even roller coasters!) before school started in the fall.

    Here is what I really want you to know: My son's double curves were 30 degrees before VBS surgery. After 11 months and 4" of growth, his curves are 7 degrees thoracic and 11 degrees lumbar! Staples were placed only on the thoracic curve. His surgeon jokingly called him the "poster child for VBS."

    Two to three months to heal with no loss of flexibility verses 6 years in a brace with fusion surgery still a possibility... For us we were willing to take a chance on VBS.

    Teresa
    Teresa
    Age 46; Diagnosed at age 11, 4 years Milwalkee Brace
    62/66 degrees pre-op
    Surgery 6/09/10 with Dr. Lenke - T4-S1, 2 cages
    20/17 degrees post-op
    SCOLIOSIS RUNS IN THE FAMILY!
    Mom to:
    Ryan, diagnosed @ 13 w/24 degree curve; Lauren diagnosed @ 10 w/10 degree curve; Bryce diagnosed @ 9 w/19 degree curve. Bryce underwent vertebral stapling 5/11/09, 28 degrees pre-op to 7 degrees one year post-op. Vertebral Stapling ROCKS!

  5. #5
    Join Date
    Oct 2009
    Posts
    89
    Teresa

    Thank you. Congratulations on your son's success with VBS.

    I am looking at it the same way. My daughter is 8. She will be 9 in September. So, even if we are successful with bracing, she could be in a brace for another 6 years. And in the end, even if we are able to hold it, does it mean it will stay stable. Some of the doctors, including some of the VBS doctors, feel that once a curve has reached 36 it will eventually work its way back.

    If that is the case, then bracing may be a waste of time. It is sometimes hard to move forward with the surgery when you think maybe we can reduce the curve to low 20s or maybe even low teens. But to do that, and hold it, I have to assume it will take on-going bracing for many years (until maturity). I have seen some with a 30+ deg curve reduce it to low teens and then either stop bracing or go to part-time bracing only to see it increase back to the 30s again. And the riskiest years are yet to come when she is 11-13. During those years it is almost a guarantee she needs to be in a brace (if we don't do VBS). And she will probably need to be in a hard brace full-time to be safe.

    It seems with VBS, while we are back down below 30, it would be a good time for her to have it done. I am trying to weigh the pros and cons of having it done now, around 9 vs waiting until she is about 11.

    One of the challenges in all of this is also insurance coverage. While it can be done at Shriners for free they are getting very busy. So, getting it done there sooner than later may be best. It is hard to tell whether our current insurance or some other insurance in a couple years will pay for it. One VBS doctor was supposed to be getting us insurance pre-certification but I have not heard back from him for quite some time and for some reason he is not responding to emails. I will need to give him a call.

    I hope we will be meeting Dr. Betz in June for our next checkup. At that time it will interesting to see if Dr. Betz recommends it be done now or later. I know if a child is tolerant of bracing he likes to continue bracing instead of doing VBS. It will be interesting to see that if my daughter gets down into the low 20s or teens whether he would still do the VBS or wait until she progresses again.

    While I thought we had missed the VBS window when she reached 36, we may still be able to get VBS. Dr. Betz in February said he would recommend VBS/Hybrid Rod because she had already reached 36 at one point. However, he said if she could get down below 30 consistently he would consider VBS. If we get down below 30 consistently, maybe we should just do it and not take the chance she increases above 35 again and we have to do VBS/Hybrid Rod. That might be a key factor for us.

    I very much appreciate you sharing your experience with me. You have definitely taken the one option that looks appealing to us. Also, if the VBS can help with her rotation/rib hump that is an additional bonus compared to bracing for years. I have not seen much improvement in the rotation/rib hump with the bracing.

    Thank You
    Michael

  6. #6
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,903
    Quote Originally Posted by Greenthumb View Post
    My son was diagnosed with scoliosis at age 9. His curves were both around 16 degrees when first measured. Over the following year they continued to progress. When they reached 26 degrees the doctor said we needed to start some form of intervention because the curves were definitely progressing. We considered both bracing and VBS. He would need full time bracing for years if we went that route, potentially 6 years or more. After hearing the options my son voted for VBS surgery rather than bracing. We don't have any long term studies on VBS, but we felt the potential for success was great and worth trying. There have been plenty of studies that indicate that if you can keep the curves below 40 degrees at maturity the chance of progression goes way down.

    We had to make a decision quickly. My son was at a risser 0, but based upon his older brother's growth, we knew he was about to start his growth spurt. The studies have also shown that after 35 degrees the success rate for VBS drops. We did go ahead with the VBS knowing that a brace might still be in his future.

    The surgery was at the begining of summer and he was totally healed and cleared for all activities (even roller coasters!) before school started in the fall.

    Here is what I really want you to know: My son's double curves were 30 degrees before VBS surgery. After 11 months and 4" of growth, his curves are 7 degrees thoracic and 11 degrees lumbar! Staples were placed only on the thoracic curve. His surgeon jokingly called him the "poster child for VBS."

    Two to three months to heal with no loss of flexibility verses 6 years in a brace with fusion surgery still a possibility... For us we were willing to take a chance on VBS.

    Teresa
    Fabulous testimonial!
    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."

  7. #7
    Join Date
    Mar 2008
    Posts
    19

    Insurance and VBS

    Michael,

    I would contact your insurance carrier yourself and see what you can find out. Thankfully our insurance covered the surgery. The cost before insurance was just over $168K. Even though it is a fairly new procedure it has been performed long enough that it is no longer viewed as experimental.

    Teresa
    Teresa
    Age 46; Diagnosed at age 11, 4 years Milwalkee Brace
    62/66 degrees pre-op
    Surgery 6/09/10 with Dr. Lenke - T4-S1, 2 cages
    20/17 degrees post-op
    SCOLIOSIS RUNS IN THE FAMILY!
    Mom to:
    Ryan, diagnosed @ 13 w/24 degree curve; Lauren diagnosed @ 10 w/10 degree curve; Bryce diagnosed @ 9 w/19 degree curve. Bryce underwent vertebral stapling 5/11/09, 28 degrees pre-op to 7 degrees one year post-op. Vertebral Stapling ROCKS!

  8. #8
    Join Date
    Oct 2009
    Posts
    89
    Thanks Teresa

    I will contact them again. I had contacted them before and they said it was experimental and would probably not be covered. I asked them for some type of pre-authorization and they said they did not do that.

    The same day I asked them about something else (not VBS but still scoliosis related) and one person said yes, absolutely covered. Later I talked to someone else and they said no. Again, I asked for some documentation so I would know if it was covered before incurring the expense, and they said they could not provide anything. They suggested I just do it and then submit it for insurance purposes.

    I have UnitedHealthCare - Golden Rule insurance.

    I was letting the doctor do it because he said they do it all the time and can get pre-authorization very quickly. I had an in-network VBS doctor but not sure what is going on with him. I have heard some negative comments on him and cancellation of surgeries. I was feeling good working with two VBS doctors, Dr. Betz and an in-network doctor.

    We should be able to meet with Dr. Betz in June. At this time we will get his recommendation on whether to do it now or wait. I am leading towards the VBS because even with bracing and all the risks of progression at some point, I am not confident that bracing will ever fix the 15 deg rotation and rib hump. That in itself may be one of the main reasons to go with VBS. The last time I met with Dr. Betz he tested my daughter and said he would be able to fix the rib hump.

    So, the main decision now may be more on when to do it and where to do it.

    But meanwhile I will contact insurance company again and also research other VBS doctors who may be in-network.

    Thank you for the suggestion.

    Michael

  9. #9
    Join Date
    Aug 2007
    Posts
    388
    Teresa, Do you mind me asking which insurance you have? Was it approved immediately or was it initially rejected and then approved upon appeal?

    Unfortunately many insurance companies are still rejecting VBS coverage although some do seem to cover it upon appeal.

    By the way, glad to hear of such great results for your son. Good you periodically post with updates on his progress? We love to hear about people's post VBS journies.
    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

  10. #10
    Join Date
    Mar 2008
    Posts
    19

    VBS and insurance

    We had Blue Cross PPO. It was approved immediately.

    From the time we made the decision we had to do the surgery quickly. My husband was transfered from Kansas City to Houston. We were afraid that if we waited until after we moved and established a relationship with a new surgeon we might miss the window of opportunity to do it at all.

    The doctors were awesome. They canceled clinics one day so they could do Bryce's surgery before we left. He had three surgeons. His doctor who was dept head, the doctor experienced in VBS insertion, and the head of the endoscopic surgical unit.

    We decided, had insurance approval, and actual surgery within less than a two month period.

    The surgery has been done for more than 5 years. It is not new. It is not experimental. There are just no long term studies yet.

    Teresa
    Teresa
    Age 46; Diagnosed at age 11, 4 years Milwalkee Brace
    62/66 degrees pre-op
    Surgery 6/09/10 with Dr. Lenke - T4-S1, 2 cages
    20/17 degrees post-op
    SCOLIOSIS RUNS IN THE FAMILY!
    Mom to:
    Ryan, diagnosed @ 13 w/24 degree curve; Lauren diagnosed @ 10 w/10 degree curve; Bryce diagnosed @ 9 w/19 degree curve. Bryce underwent vertebral stapling 5/11/09, 28 degrees pre-op to 7 degrees one year post-op. Vertebral Stapling ROCKS!

  11. #11
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    Hi Teresa,

    WOW, that is a great VBS success story!!! I'm so happy for your son.

    There's another boy whose mom belongs to the VBS site who has had similar success - he had about the same size curve as your son before VBS and he is now around 6 degrees and if I am correct it's about two years since his surgery. It seems that particularly when you start below 35 degrees, the results are often very, very good.

    I would also like to say that if you are so inclined to join our VBS support group we'd love to have you - I think other parents would love to hear your story.

    In any event, I wish your son continued success - and yes, he does get my vote for "VBS Poster Child"

    p.s. Not that it makes a huge difference, but I wanted to also share that VBS has been done longer than five years. My son is over six years post op - and at the time of his surgery, VBS had been performed for a couple of years (I recall speaking to one mom right before my son's surgery in early 2004 whose daughter was about 18 months post-op, so I guess it was being done at least as far back as late 2002). So, I agree with you that it should no longer be considered 'experimental'.
    Last edited by mariaf; 04-28-2010 at 12:07 PM.
    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/

  12. #12
    Join Date
    Mar 2008
    Posts
    19
    Maria,
    Somewhere along the line 5 years was mentioned to me for something related to VBS...oh well. The longer the better for justification with the insurance companies!
    T
    Teresa
    Age 46; Diagnosed at age 11, 4 years Milwalkee Brace
    62/66 degrees pre-op
    Surgery 6/09/10 with Dr. Lenke - T4-S1, 2 cages
    20/17 degrees post-op
    SCOLIOSIS RUNS IN THE FAMILY!
    Mom to:
    Ryan, diagnosed @ 13 w/24 degree curve; Lauren diagnosed @ 10 w/10 degree curve; Bryce diagnosed @ 9 w/19 degree curve. Bryce underwent vertebral stapling 5/11/09, 28 degrees pre-op to 7 degrees one year post-op. Vertebral Stapling ROCKS!

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