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Thread: New here..7 y/o Son has 26 degree curve...

  1. #1
    Join Date
    Jan 2010
    Posts
    4

    New here..7 y/o Son has 26 degree curve...

    Hi -- this is my first time posting. I am the mom of a wonderful 7 y/o little boy who was recently diagnosed with a 26 degree thoratic curve with an 11 degree rotation, and a 23 degree lower curve. The initial assesment with Dr's here in New York was to brace him 18 hours a day in a Boston brace until he stops growing -- ( which would be well into his teens). We have been doing that for about 2 months now-- and he is doing good-- although he hates the brace...and it breaks our heart. With the advice of some wonderful people ( Maria!) on this board, we went to Shriners in Philly to meet with Dr Betz and Janet. They are amazing! They gave us some hope-- when other Dr's said he will be braced till growth stops and very possibly surgery. Right now-- we are just bracing and watching. We did put him on the VBS ( vertebral stapling) waiting list with Dr. Betz incase it gets worse...but right now we are just watching. It is very scary-- not knowing. Dr. Betz told us that some younger children actually stop progressing and just need to wear the brace a night-- which was good to hear! This board has been amazing to get support--I have ben lurking but never posted So thank you !

  2. #2
    Join Date
    Oct 2009
    Posts
    89
    Hi Danigirl

    Today is my first day of posting to the forum too. My daughter is 8. We learned of her scoliosis last year when she was 7. She was about 25 degrees (thoracic) and we waited to watch it before bracing. Then it was 35 degrees within 4 months.

    We started the Spinecor brace last November (11/2/09). In the brace she is about 21-23 degrees.

    One reason I wanted to respond to you is that I was in NYC the past 2 weeks with my daughter. She was in a 2 week intensive program with a doctor there that specializes in the Spinecor brace and Clear Method (chiropractic approach).

    I am from Ohio so we had to do the 2 week intensive program because we do not live close enough to visit 2-3 times per week.

    My daughter was about 30 degrees out of her brace for 48 hours when we started the program. She was about 23-25 when we ended (out of brace) and about 13-18 in the brace.

    My daughter has about 2 hours of exercises to do daily to try and maintain the improvement. It is very early for us to know if we will be able to maintain it.

    Here is the doctor's information.

    Dr. Aatif Siddiqui (Dr. Sid)
    2 w 45th street
    suite 1708
    new york, new york 10036
    T 212 354 2020

    He might be able to give you a different perspective. I enjoyed working with Dr. Sid and his team. My daughter was in treatment about 8 hours per day. She handle it very well.

    The past year I have tried to learn a lot about scoliosis. And when I think I am getting a handle on it I learn more and more. I learned of VBS today. It sounds like we should make a trip to Dr. Betz to learn more and get his recommendation.

  3. #3
    Join Date
    Jan 2010
    Posts
    4
    Thanks for the information Micheal--
    Right now we are very happy with Dr. Betz. When my son is wearing the Boston brace -- he is corrected to 13 degrees and 10 degrees-- which is very good. The dr's told us that they want to see a brace correct atleast 50% in order for them to consider it effective, so they are very happy. It is uncomfortable at times-- but he is a trooper. We just pray that it does not get worse-- but if it does I feel like we are in amazing hands with Dr. Betz! How does your daughter handle it all? It is alot for a 7/8 year old to deal with ...

  4. #4
    Join Date
    Oct 2009
    Posts
    89
    She is doing very good with all of it. She has been in the brace since last November so it has been less than 3 months. She is very disciplined with wearing it. She takes it off in the morning for a couple hours and then puts it on for school. She then takes it off again after school for a couple hours. Then she wears it rest of the evening and night. She wears it about 20 hours per day.

    The brace does not bother her at all. She has really gotten used to it. She is able to do just about everything in it, including playing sports.

    When we were in NYC she was in therapy about 8 hours per day 10-2 and 4-8 for 2 weeks. And now she has to do about 2 hours of therapy/exercises at home each day. Most of the therapy/exercises is her standing on an air disc balancing herself with some weights on her head and shoulder forcing her to stand with a posture that has her spine straighter. The idea is to have the spine straight as possible and strenghten the muscles with the exercises. She does it while watching disney so it helps the time go by.

    As I read through the forums I have found the Cheneau brace and Schroth method very interesting. Some of the people have seen an almost 75%-100% reduction of the curve while wearing it. We are not able to get to that level with the Spinecor. We are closer 50%. We can get closer to it 75%-100% reduction with some of the exercises. We were able to get a 100% reduction with the use of a traction chair that we used during the therapy in NYC. But we have not decided yet to purchase one of these chairs (due to the cost). If we did get it she would be in it about 30 minutes two times a day.

    At this time we are going to try this approach for a period of time and see the results. While it is hard for both of us to have such young kids with scoliosis the good news is that at this young age we have the best chance to get it reduced while the spine is so flexible.

    I appreciate your response. It is helpful to discuss this with others. This includes others who are taking the same approach as well as others who are taking a different approach.

    I wish you and your son the best. I have read nothing but very good comments about Dr. Betz. We should schedule a visit to Dr. Betz to get his recommendation.

  5. #5
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,160
    I believe a rough estimate of the current wait time for VBS at Shriners Philly is approaching a year if not more. We have been waiting since August/September and have little hope for a date anytime soon.

    There are a number of other well-regarded surgeons who perform VBS around the country. There is a list at www.vertebralstapling.com for those who may be interested.
    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

  6. #6
    Join Date
    Jan 2010
    Posts
    4
    We were told the waiting list is about a year long with Dr. Betz and his associates. We put my son on the list and will see how he is when the time comes. Our Dr here in NY never mentioned it either --- just gave us the sentence of bracing until he stops growing-- most likely 8-10 years. I would love to know every option available and make my decision that way.

  7. #7
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    It's sad that things haven't changed much. It was the same story with David - our doctor back then never mentioned VBS, like someone said probably because she didn't perform it. When I brought it to her attention, she brushed it off saying it was "new". I found it funny that "new" was the worst thing she could find to say about it. Everything is NEW at some point.

    Anyway, Gayle's advice is excellent. While the wait for VBS at Shriners Philly is now probably approaching a year, there are a couple of other Shriners hospitals around the country that perform VBS; and for those who can get their insurance companies to cover it, there are several doctors outside of Shriners who perform the procedure. There ARE insurance companies that will cover it, although don't be surprised if the first request is denied. The common scenario seems to be that both the family and the surgeon have to appeal and then several insurance carriers have covered it. We must have well over a dozen doctors (besides the ones at Shriners) listed on the VBS site that we know of who perform VBS (I'm sure there are others that we don't know of) - and I'm sure they would not be performing VBS unless some insurance companies were covering it.

    So don't give up hope
    Last edited by mariaf; 02-08-2010 at 08:51 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/

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