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Thread: My sweet 8 yr old daughter is about to get her first brace

  1. #46
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    Quote Originally Posted by Resilience View Post
    I feel good about the direction we are headed.
    As well you should :-)

    You have scoured the country, literally from coast to coast, to get your daughter the best care! And since she seems to be an excellent candidate for VBS, you have every reason to be optimistic for a successful outcome.

    Please keep us posted.
    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/

  2. #47
    Join Date
    Sep 2011
    Location
    Virginia Beach, VA
    Posts
    10
    Hi Resilience! It sounds like you and I are on a very similar journey with our daughters. I have been reading your thread and just have not had the time to sit down with thoughtful reply =)

    I am so happy to hear that the bump is nothing to worry about. Funny that you mention a bone cyst as I had never heard of one until recently. But they are quite common from what I understand.

    We are curently trying to decide whether to have the tethering procedure done as PJ's major thoracic curve is too big for VBS. She was also diagnosed in 2010 at age 8.

    We hope all goes well with your daughter's procedure. Please keep us posted.

    @Gayle - It looks like you have had your revision done by now. I hope you are feeling well and that all went well with the surgery =)
    Tracey, 43

    daughter diagnosed 2/10 age 8
    TLSO brace 20 hours 6/10 T27 T31
    TLSO brace 20 hours 10/10 no change
    TLSO brace 20 hours 4/11 T37
    TLSO brace 20 hours 8/11 42T
    TLSO brace 20 hours 1/12 T28 T42 L26

  3. #48
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    Tracey,

    There is another thread about Gayle's surgery. She had to deal with quite a bit of pain, etc. but came home from the hospital and is hopefully now on the road to recovery. The doc said her surgery went well and he does not expect any future problems.
    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/

  4. #49
    Join Date
    Nov 2010
    Location
    San Diego, CA
    Posts
    104
    Mom to PJ,

    Best wishes for your daughter! Do you go to Shriner's Philadelphia too?

    Yes, we are on similar paths.

    We will be at Shriners on 3/29 for an office visit and then check in on 4/24 for VBS on the 25th.
    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

  5. #50
    Join Date
    Sep 2011
    Location
    Virginia Beach, VA
    Posts
    10
    Yes! We did make it to Shriner's and are currently on the waiting list for tethering while we consider our decision. It is amazing to me how many people are dealing with this disease with so little information out there about it. I have met so many adults who suffer from scoliosis since I started talking to people about what is happening with our family. I am a very private person and it is difficult for me to discuss something so personal but I am so glad that I have started. I am so glad that I found this forum. I don't understand why our doctors never even mentioned that there may be alternatives to bracing for so long, especially when the bracing became ineffective, or at least non-preventative. It may have been much worse without the bracing, but her curves continue to worsen even with it.

    Best of luck to you and your family for the surgery. I hope the outcome is everything that you are hoping for and please keep us updated on your daughter's progress after the surgery
    Tracey, 43

    daughter diagnosed 2/10 age 8
    TLSO brace 20 hours 6/10 T27 T31
    TLSO brace 20 hours 10/10 no change
    TLSO brace 20 hours 4/11 T37
    TLSO brace 20 hours 8/11 42T
    TLSO brace 20 hours 1/12 T28 T42 L26

  6. #51
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    Quote Originally Posted by mom to PJ View Post
    I don't understand why our doctors never even mentioned that there may be alternatives to bracing for so long, especially when the bracing became ineffective, or at least non-preventative.
    This was true in my son's case as well. We found out about alternatives (in his case, VBS) on our own, almost by accident. Sad that things don't seem to have changed much in the past 8 years.

    In any event, I'm glad you were fortunate enough to find these alternatives on your own as well. It's actually the main reason we started www.vertebralstapling.com - to make sure people DID know what all their options are and could then make their own informed decision.
    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. #52
    Join Date
    Nov 2010
    Location
    San Diego, CA
    Posts
    104

    Thank you!!!

    Thank you Maria and your friends who pioneered the VBS site.

    Please know that you have made the difference in many children's lives by getting the word out!

    Thank you all for paying it forward!
    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

  8. #53
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    Thanks for the kind words - I will pass them along to the others involved in running the site.

    I also wish to point out that the website could not work or function without all of the wonderful parents who came after us, and who continue to pay it forward as well.
    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/

  9. #54
    Join Date
    Nov 2010
    Location
    San Diego, CA
    Posts
    104

    the countdown to VBS...

    My daughter had her appointment with Dr. Samdani last week and all went well. As others have said, he was sincere and informative and had a calm presence. We discussed the rib cage changes which have developed as a result of her brace and while he said these side effects do not contraindicate the brace, the VBS option is even more appealing in her situation. What I really appreciated was that he was in no way "selling" VBS. He wanted to make sure that we understood all of the options available. We are very much ready for VBS but I appreciated his candor. He said that if it were his daughter he would also want the VBS for her and that was, of course, reassuring to hear.
    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

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