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Thread: Confused

  1. #1
    Join Date
    Apr 2012
    Posts
    13

    Confused

    I am still very new to both this board, and scoliosis in general. DD#2 is 13yo and has a double major curve of 54/50. Surgery is going to happen for her. The Dr. decided to x-ray the other two kids, as she noticed some curvature in DD#1-14yo and DD#3 who is 8yo. I peeked at the x-rays and thought they looked perfect, but I guess I was just so used to looking at the crazy curves on DD#2, because I got called today to let me know that both the other girls have 13-thoracic and 13-lumbar curves and the 8yo has rotation already. They both need to see an orthopedist. Now, DD #1 doesn't have me all that worried. She's 15 next month and a Risser 5, so I really feel like she is probably out of the woods. I am very worried about my 8 year old, as her rotation is in the exact same spot as her sister who is having surgery. I was devastated when I found out my DD#2 was going to need surgery, but in a way it saved her from dealing with years of bracing before she needed surgery, anyways. Deciding on treatment for #2 was relatively easy, and honestly I expect her to have an excellent surgery and to be able to put this behind her quickly. Now I am worried that DD#3 is going to spend years in a brace. This has all happened so quickly that I don't know if I am just overwhelmed by it all, but I feel so sad at the thought of years of irritation and discomfort for her.
    DD #2 fused T-2 through L-5 07-03-12
    DD #3 9y/o progressing. 19 degrees as of 01/13

  2. #2
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,901
    Quote Originally Posted by ChrissysMom View Post
    Now I am worried that DD#3 is going to spend years in a brace. This has all happened so quickly that I don't know if I am just overwhelmed by it all, but I feel so sad at the thought of years of irritation and discomfort for her.
    That's a normal reaction, especially when there are no guarantees with bracing. Bracing is still experimental and all the ethics have not been worked out.

    The good news is that at T13* L13* in JIS, you have some time to explore some non-fusion surgical options including vertebral body stapling (VBS) and tethering should the curve prorgess (which is less likely than either stability or regression as I understand it). These are being developed precisely because the ethics of bracing a JIS curve for years and years are dicey for many parents.

    Here is a web site run by some members here for VBS. You can ask questions there.

    http://www.vertebralstapling.com/

    Good luck.
    Last edited by Pooka1; 04-20-2012 at 11:43 AM.
    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."

  3. #3
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    Thanks, Sharon.

    Chrissy's Mom,

    I co-moderate the VBS site. VBS, or vertebral body stapling, is a one-time surgery which can be an alternative to years of bracing. It is, in essence, an internal brace.

    Please feel free to e-mail me (address is in my signature), or go on over to the VBS site and check it out. Folks do need approval to access certain parts of the site (just to protect the privacy of our kiddos), but if you would like access, we would of course be happy to have you so that you can learn more about this procedure should you be interested.
    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. #4
    Join Date
    Apr 2012
    Posts
    13

    so grateful

    Quote Originally Posted by mariaf View Post
    Thanks, Sharon.

    Chrissy's Mom,

    I co-moderate the VBS site. VBS, or vertebral body stapling, is a one-time surgery which can be an alternative to years of bracing. It is, in essence, an internal brace.

    Please feel free to e-mail me (address is in my signature), or go on over to the VBS site and check it out. Folks do need approval to access certain parts of the site (just to protect the privacy of our kiddos), but if you would like access, we would of course be happy to have you so that you can learn more about this procedure should you be interested.
    I am so thankful that I found these boards. I am excited to see that there are several Drs. within an hour drive of my home who perform this surgery, which makes it a real possibility if DD#3 progresses. I would like to say that I can travel wherever I need to for surgery, but that just isn't an option. I guess I finally found an upside to living in the Los Angeles area.
    DD #2 fused T-2 through L-5 07-03-12
    DD #3 9y/o progressing. 19 degrees as of 01/13

  5. #5
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    Quote Originally Posted by ChrissysMom View Post
    I am so thankful that I found these boards. I am excited to see that there are several Drs. within an hour drive of my home who perform this surgery, which makes it a real possibility if DD#3 progresses. I would like to say that I can travel wherever I need to for surgery, but that just isn't an option. I guess I finally found an upside to living in the Los Angeles area.
    Chrissy's Mom,

    I'm happy you feel better after perusing our site - that is exactly the reason we created it, to help parents like you learn about these treatment options.

    Even though VBS is now performed much more widely than it was even just a few years ago, it's not routinely offered everywhere as a treatment option, even in cases where it would be appropriate. Tethering, which is even newer procedure - but which so far looks extremely promising, is mainly performed in Philly and in CA by Dr. Newton - although I'm sure it will catch on, much the same way VBS did, but some kids don't have 5 to 10 years to wait!
    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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