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Thread: Nate's VBS Update and Photos/Xrays

  1. #1
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    Nate's VBS Update and Photos/Xrays

    I am finally posting a delayed update about my son Nate, and am very happy that I am able to share Great News! Below, I have shared both the background and current info about our son in hopes of providing a clear picture that I really hope can help other parents.

    Nate was diagnosed with scoliosis in August 2007 when he was 11. I had noticed a curve before that, but naively believed that “lots of kids had scoliosis and that it would be just fine” that had been the history I had seen of friends, my sister, and my husband even told me the same of his brother. (Nate had pain in his thoracic region of his back from the time he was 8 years old ~ I believe this was when his curve began to progress, but an mri only showed mild scoli at that time)
    At age 11, the pediatrician determined by scoliometer, and x-ray that Nate should be further evaluated, and I learned that he had a thoracic curve of 38 degrees. Nate pretty quickly decided that bracing was not for him, and both my husband and I agreed that he had very little chance of being brace compliant through college (which is what we were told was a likely scenario bc Dad is 6Ft 5 in. and grew until age 21). We were then told about a procedure called vertebral body stapling which Children’s Hospital Boston was ready to begin selecting candidates for. The doctors we spoke with were very encouraged by the results that had been seen with other patients, and felt VBS could be an effective treatment for Nate’s scoli.

    Nate had VBS in December 2007 at Boston Children’s Hospital. He was out of school for 3 weeks (the last week he definitely could have returned to school but it was the Christmas Vacation). He was playing full contact hockey, and snowboarding before two months post –op. Looking back, I would say he was not 100% but he really wanted to be “back to normal” and there was no medical reason to keep him down. I think that his mental toughness and love for physical activity helped him pushed himself back to participating in everything he loved to do. Over the next 6 months, we saw Nate begin struggling with upper back pain again, and the x-rays were discouraging. His curve ended up returning to almost pre-vbs levels, and he developed a trunk shift. I felt horrible that he had gone through surgery “for nothing” but fortunately had other parents who kept reminding me that the REAL goal of VBS is to maintain the curve, and keep it from progressing, that at 35 degrees he would not need fusion which was our ultimate goal in treatment (either bracing or VBS). We tried PT for about 2 months but the pain continued and his curve progressed. He ultimately developed a trunk shift that really concerned us, as well as his surgeon. We got a second opinion from Dr. Betz who recommended that Nate try bracing again. Both doctors told us that trunk shifts can often improve with bracing, unlike the stats for seeing long term correction with a typical scoli curve.

    We battled with Nate for almost 8 months to wear his brace, and then he had an unfortunate snowboarding accident. He completely shattered his heel when he fell over 20 feet straight down (the staples and his back were fine!). This required surgery (8 screws & a plate) and a recovery that was much longer than VBS. He was in a wheel chair for 3 months, and then crutches, and a “boot” for 3 more months. For obvious reasons, we put the back brace fight on the back burner during this time, and he completely stopped wearing it. His trunk shift had markedly improved from the brace by this time.

    As we went for heel xrays, the spine xrays were also continued and amazingly we saw Nate’s back start to improve. Nate went through a big growth spurt during this time, and the staples did what we had all hoped for, his spine began to straighten, and the pain/tightness disappeared. Each time we went for xrays, the numbers were lower, and his overall balance (trunk shift) improved drastically.

    As they say a picture is worth a million words so I have attached several xrays to show you Nate’s VBS success story. Nate still has one more surgery ahead of him this fall for his heel injury, but in the mean time is enjoying every day to the fullest, and having a great time this summer, golfing, surfing, and fishing……..brace free! Nate still has a lot of growth ahead of him, and I will update here again from time to time to let you know how he is doing. I know there are many members here who are interested in the VBS stories, and I hope by sharing my experience it can help others. I am eternally grateful to Nate’s surgeon (same dr for both back and foot) for all he has done to help our son live the active life he loves!

    Best to all,
    Cara

    (The rest of the pics are on the next post below, bc of size limitations)
    Cara, Mom to Nathan
    Diagnosed 24 deg. in July 2007, progressed to 38 deg. by August 2007
    Boston Back Brace 8/07 – 12/07
    VBS 12/10/07 Boston Children's Hospital
    Dr. Hresko
    40 Degrees before VBS
    11 Degrees now!! (2012)

    Nathan's VBS Video

    www.vertebralstapling.com

  2. #2
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    More X-rays

    Here are the rest of the xrays, including the most recent xray showing how straight his back now is!
    Cara, Mom to Nathan
    Diagnosed 24 deg. in July 2007, progressed to 38 deg. by August 2007
    Boston Back Brace 8/07 – 12/07
    VBS 12/10/07 Boston Children's Hospital
    Dr. Hresko
    40 Degrees before VBS
    11 Degrees now!! (2012)

    Nathan's VBS Video

    www.vertebralstapling.com

  3. #3
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    Wow, that heel is amazing! How did they get that much metal in there?

    My daughter also rapidly developed a trunk shift at 35 degrees. It made turning in ballet almost impossible due to the improper center of gravity. And your doctors are right, her nighttime bending brace absolutely fixed the shift. In fact, for the first couple of months after starting to wear her brace, my daughter's shoulders were still shifted to the side even though her spine was standing straight again. Within a few months, her shoulders had moved permanently back to the correct place! I remember that as a very scary and disturbing time.

    Nate's results are great...it's amazing it almost didn't seem to "work" initially. As he still has a lot of growth left, what do the doctors say they'll do should the improvement in the curve continue and it passes the zero degree mark and into negative numbers? Do they remove the staples? Or do they put other staples into the opposite side of the curve or require him to wear another brace? Or do they just let it go and assume that it will end up less than the thirty-eight degrees of the original curve? I'm curious what you do in that case.

    Anyhow, thanks for sharing your experience. It's interesting that he wouldn't even be considered for regular stapling currently since he had a curve greater than 35 degrees. He is apparently a unique and fortunate individual!
    Last edited by Ballet Mom; 07-29-2010 at 07:17 AM.

  4. #4
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    Quote Originally Posted by Ballet Mom View Post
    As he still has a lot of growth left, what do the doctors say they'll do should the improvement in the curve continue and it passes the zero degree mark and into negative numbers? Do they remove the staples? Or do they put other staples into the opposite side of the curve or require him to wear another brace? Or do they just let it go and assume that it will end up less than the forty degrees of the original curve? I'm curious what you do in that case.

    Nate has a long way to go before we would begin to worry about over correction, if it overcorrected to +/- 15 degrees the other direction I believe that is the point they would consider removing the staples, or perhaps even trying a night brace temporarily to get it back closer to zero. For now I am just enjoying the eleven degrees!

    Quote Originally Posted by Ballet Mom View Post
    It's interesting that he wouldn't even be considered for regular stapling currently since he had a curve greater than 35 degrees. He is apparently a unique and fortunate individual!
    Nate definitely could still have been a "regular stapling" candidate today at 35 degrees because of his young age at the time of surgery (11), flexibility of his curve, and the amount of growth ahead. The 35 degrees is not a firm cut off for all VBS doctors, other factors are definitely factored in.

    I am glad to hear that your daughter's trunk shift responded so well to the night brace. I find that interesting because I had really hoped during that time that Nate could have a night time only brace, but was told by the drs, orthotist, (and I even called and spoke with the President of Spinal Technologies who manufactures the Providence brae) that he would need a brace to wear during the day because the trunk shift responds best to bracing when they are standing upright/gravity. We were going to try boston brace during the day & Prov. at night but ended up just with the boston. Anyhow- glad that the bracing worked for both of our kids!!

    Thanks for the good wishes,
    Cara
    Cara, Mom to Nathan
    Diagnosed 24 deg. in July 2007, progressed to 38 deg. by August 2007
    Boston Back Brace 8/07 – 12/07
    VBS 12/10/07 Boston Children's Hospital
    Dr. Hresko
    40 Degrees before VBS
    11 Degrees now!! (2012)

    Nathan's VBS Video

    www.vertebralstapling.com

  5. #5
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    Quote Originally Posted by nate03 View Post
    For now I am just enjoying the eleven degrees!

    /
    /
    I am glad to hear that your daughter's trunk shift responded so well to the night brace. I find that interesting because I had really hoped during that time that Nate could have a night time only brace, but was told by the drs, orthotist, (and I even called and spoke with the President of Spinal Technologies who manufactures the Providence brae) that he would need a brace to wear during the day because the trunk shift responds best to bracing when they are standing upright/gravity. We were going to try boston brace during the day & Prov. at night but ended up just with the boston. Anyhow- glad that the bracing worked for both of our kids!!

    I'll bet you are enjoying the eleven degrees!

    My daughter's success could be due to her using a Charleston Bending Brace at the time...it immediately shoved her spine way over in the opposite direction. Quite a bit different concept than the Providence brace.

    That's why her shoulders were so unnerving to me. She immediately was standing straight, but her little shoulders still jutted out to the side! And in a ballet leotard, quite noticeable every night! Fortunately it was short-lived.

  6. #6
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    Hi Cara,

    Wow, even though I've followed Nate every step of the way, there were some things I had forgotten. You have one incredible (and active!) young man there. I can't stop looking at that x-ray of 11 degrees!!! His back looks great, especially since he - like David - had a considerable curve before VBS.

    It's easy to see why VBS was such a great choice for Nate - not only because he had a tough time with the brace, but because he is such a daredevil

    David is a lover of sports as well, particularly baseball (he's attending a local baseball camp as we speak) so I have a younger (albeit perhaps a slightly less adventurous) version of Nate right here - LOL!
    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/

  7. #7
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    I love hearing Nate's story. I feel like Liv's story is so similar and his amazing results always help keep me optimistic!

    Interesting about the trunkshift. That is the only thing still visible on Olivia...her higher shoulder is barely noticable anymore. I'm hoping for a disapperance of that trunkshift as well! Hopefully the staples along with the brace will help do the trick!

    Nate's most recent xray is absolutely amazing......I can't believe how straight he is I'm so happy for him - he's been through a lot!

  8. #8
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    Nate's VBS Surgery Details

    Nate's surgery took about 4+ hours, he then went to the PACU (Post Anesthesia Care Unit) for a few hours before he was transferred to his room. He did not go to PICU at all - even fusion patients are not regularly sent to Intensive Care at Boston Children's Hospital. The nurses on his floor who cared for him are used to taking care of fusion patients, and they couldn't believe how great he was doing. (Nate was the first VBS patient at Children's Hospital. They kept asking, he had a fusion?? And when they saw what he had done instead with the staples they were amazed. )He had a little bit of a rough first night - mostly trouble trying to cough.

    He needed the chest tube for 48 hours (most kids need it for less than 24) and once that was out his recovery came along very quickly! The surgery was on a Monday, and he came home Friday. He might have even been able to come home on Thursday but there was a huge snow storm, and because he didn't have the chest tube out until Wed evening they thought they would keep him one more night. He walked a little bit "hunched over" for a couple of weeks - favoring the side of the incisions, and he needed pain medication for about a week after we came home just at night.

    Nate's post-op week was not as easy as some - Several children I know had the chest tube removed within the day, were home within 3 days, and back to school at one week post-op. But overall, I would say he had a decent, uncomplicated post-op experience! The day we came home from the hospital he asked if he could go sledding :-)
    Cara, Mom to Nathan
    Diagnosed 24 deg. in July 2007, progressed to 38 deg. by August 2007
    Boston Back Brace 8/07 – 12/07
    VBS 12/10/07 Boston Children's Hospital
    Dr. Hresko
    40 Degrees before VBS
    11 Degrees now!! (2012)

    Nathan's VBS Video

    www.vertebralstapling.com

  9. #9
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    I wanted to follow-up with a further explanation after receiving a Private Message about my son being "lucky".................it is truly our family's outlook that makes my posts so positive about our experiences with Nate. Do I have times that I feel badly for him that he can't try out for the JV Golf team this fall, or get a chance at his High School hockey team this year (two of the golas he has had since kindergarten!)? YES of course I do, any parent would - but I know it is much more beneficial for him when we focus on what he can do,and will be able to do in the future, despite the cards he's been dealt the past couple of years.

    We also try to share motivational stories with him as often as possible..........and for anyone who hasn't seen Nick Vujici, it is truly inspiring, and one of my favorites. I think it really touches everyone who watches it:
    http://www.youtube.com/watch?v=H8ZuK...eature=related

    I hope that by sharing Nate's story we too can help encourage other families and kids dealing with scoliosis, bracing and surgery.

    -Cara
    Cara, Mom to Nathan
    Diagnosed 24 deg. in July 2007, progressed to 38 deg. by August 2007
    Boston Back Brace 8/07 – 12/07
    VBS 12/10/07 Boston Children's Hospital
    Dr. Hresko
    40 Degrees before VBS
    11 Degrees now!! (2012)

    Nathan's VBS Video

    www.vertebralstapling.com

  10. #10
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    Quote Originally Posted by nate03 View Post
    As they say a picture is worth a million words so I have attached several xrays to show you Nate’s VBS success story. Nate still has one more surgery ahead of him this fall for his heel injury, but in the mean time is enjoying every day to the fullest, and having a great time this summer, golfing, surfing, and fishing……..brace free! Nate still has a lot of growth ahead of him, and I will update here again from time to time to let you know how he is doing. I know there are many members here who are interested in the VBS stories, and I hope by sharing my experience it can help others. I am eternally grateful to Nate’s surgeon (same dr for both back and foot) for all he has done to help our son live the active life he loves!

    Best to all,
    Cara
    Cara, great update.

    Those radiographs are amazing. VBS appears to alter the natural history of some of these curves. I suspect it will become a standard of care at some point.

    Best regards,
    sharon
    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."

  11. #11
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    Isn't that the truth, Sharon - I could look at Nate's x-rays all day long!

    I recall how positive Cara remained through it all - even when Nate hit some bumps in the road - and I could not be happier that things turned out so well for them!
    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
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    Hi Cara,

    I just found your updates about Nate and wanted to add my congratulations. His x-rays are truly amazing, especially the latest one with 11 degrees! This should be very encouraging especially for those that are stapled with larger curves--what a great result that he went from over 40 degrees pre-op to 11 degrees now.

    My daughter's surgeon, Dr Luhmann in St Louis (partners with Lenke and Bridwell) has also had great success with VBS, and he told me he has an article being published in 2011 with his results so far. I found it very interesting that he has had great success doing VBS alone on curves up to 40 degrees--he has not found a need to add the hybrid rod. I am looking forward to that article, and once it is published I will post the abstract here. Dr Luhmann has done at least 45 VBS surgeries, which I am guessing is more than any other doctor aside from those at Shriners Philadelphia.

    My daughter had VBS with Dr Luhmann in May, and she has done incredibly well. She had surgery on a Monday afternoon, went home Thursday, we flew home 2000 miles Saturday, and she went back to school on the following Thursday. There has been no stopping her, and her back looks great. I will try to post some x-rays as soon as I figure out how!

    Thanks again for sharing Nates story, Cara. When Leah was first diagnosed I was so devastated at the idea of her being braced for 9-10 years, especially since I had been braced myself as a teen and hated it. VBS has been a wonderful option for us, and I believe it will keep Leah from being fused in the future.
    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

  13. #13
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    Leah's x-rays

    Hi Cara,

    I have attached Leah's pre-op x-ray measured at 30 degrees, and her one-month post-op x-ray, measured at 18 degrees. I am thrilled with how good her back looks. She is beyone thrilled to be entirely brace-free.

    Take care,
    Last edited by leahdragonfly; 08-09-2010 at 08:46 AM. Reason: attachment edited
    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

  14. #14
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    Thanks for sharing those x-rays, Gayle.

    I really enjoy hearing these stories, especially one like Leah's, knowing your struggles with bracing and how diligently you worked to get her on the list for surgery, while trying to be patient at the same time.
    I just read another happy update from a mom on the VBS site - she posted that at her daughter's one year check-up last month, the child's lumbar curve has gone from 38 degrees pre-op to 6-7 degrees currently! I actually have met this family and I'm so happy for them. Last summer, another parent (whose daughter also had VBS - and who also lives in the area) had a get-together at her house; and it was such a joy to see their girls and my son running around brace-free, swimming and looking pretty darn straight. I'm getting off-topic, but connecting with other families in this way really makes the world seem like a much smaller place
    Last edited by mariaf; 08-09-2010 at 01:40 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/

  15. #15
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    Gayle, That is great news about your daughter! Congratulations - so happy to hear that she is feeling so well, and that the staples are providing correction. I am very happy for her and your whole family ~ I know it is a relief for you all to be able to put that brace away!

    Leah is an amazing young girl, and such a trooper...........I know she didn't like the brace, and I was so impressed that even at her young age, she adapted to wearing it with very little complaint, and then to see her strength to recover from surgery and get herself back to normal so quickly, she is a determined little lady :-) I love kids like that - so inspiring............nothing will keep them down! Go Leah - I wish her continued success with VBS!!

    Take care,
    -Cara
    Last edited by nate03; 08-10-2010 at 05:40 AM.
    Cara, Mom to Nathan
    Diagnosed 24 deg. in July 2007, progressed to 38 deg. by August 2007
    Boston Back Brace 8/07 – 12/07
    VBS 12/10/07 Boston Children's Hospital
    Dr. Hresko
    40 Degrees before VBS
    11 Degrees now!! (2012)

    Nathan's VBS Video

    www.vertebralstapling.com

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