Results 1 to 3 of 3

Thread: Daughter diagnosed with scoliosis - need your advice!

  1. #1
    Join Date
    Jul 2006
    Location
    New York
    Posts
    70

    Daughter diagnosed with scoliosis - need your advice!

    Hello,

    In 2008, both of my daughters have been diagnosed with idiopathic scoliosis and both of their curves were 14-15 degrees. I suffer with scoliosis since I was 12which is what prompted me to check their backs and we had the first set of xrays in 2008 and were told to wait and watch. In December of 2012, I took my daughters, who are now 8 and 10, for a follow-up and were shocked to learn that my 8 year old's curve progressed significantly. My older daughters curve remains the same at 15 degrees. My younger daughter's curves progressed from 14 degrees in 2008 to T2-T8=25 degrees & T9-L3=30.2 degrees in 2012.

    Having scoliosis myself and having to deal with it all my life, I was really saddened to find out that my daughter's scoliosis had significantly progressed and that she will have deal with scoliosis the rest of her life and wear a back brace until she is done growing. It was just so unexpected because my curves did not progress until I gave birth in my early 20s and I sort of expected the same outcome for my daughters but I was completely wrong. It took me a few days to digest the information and overcome my fear and anxiety about her having to wear a brace. I dont think my daughter fully understands the concept of having to wear a back brace and I really feel bad for her having to deal with the expirience but I do realize that there is nothing I can do about the fact that she now has a scoliosis and I need to find the right brace and treatment for her. I have been trying to find out more about back braces and did not realize that there are so many different types out there like Cheneau, spinecor, boston, etc...The prescription that the doctor gave states a TLSO for juvenile scoliosis. Can anyone give me any sort of direction as to where to start? We were given a business card of the orthotic doctor to see but I would like to be more prepared for the visit so I can ask proper questions. Any advice/tips would be greatly appreciated! Can anyone recommend a good Orthotist doctor in the New York area?

    Thank you.
    Last edited by mariya; 01-03-2013 at 09:47 AM.
    30 yrs, mom to two girls ages 9 and 7
    8/9/04 - 18* thoracic and 42* lumbar
    3/7/06 - 22* thoracic and 45* lumbar (38*kyphosis)
    4/8/08 - 38* thoracic and 50-52* lumbar (54* kyphosis)

    2007 - Scheduled surgery but cancelled due to no major health issues at the time.
    2011 - Back pain, spasms, sciatica, difficulty doing any physical work/activities w/o following back pain and spasms. Revisiting surgery decision and soon to schedule a doctors appointment to determine the progression since 2008.

  2. #2
    Join Date
    May 2009
    Posts
    3,745
    a suggestion...you might want to write to
    "mariaf" (Maria)...and ask about stapling for children...
    bracing is still controversial and there are pros and cons...
    and those who are for and against it...
    just an idea to get all view points...

    good luck with your daughters...
    jess...& Sparky

  3. #3
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    Thanks, Jess. I haven't been on the forum for several days. I have actually been in contact with Mariya in the past :-)

    Mariya,

    First, I am sorry to hear that you received this news. I know it's not what you wanted to hear.

    Regardless of whether you choose to opt for bracing or a fusionless procedure such as VBS (or even tethering, a newer procedure that has also shown promising results), I would urge you to get an opinion at Shriners Hospital for Children in Philadelphia.

    When you said you were handed a business card for the ortho, I got chills because I remember being in your shoes. And while the ortho I was referred to at the time (in NY) was, I'm sure, a very good doctor, she had little experience with younger children or JIS cases - and very little interest in any of the newer techniques. Now this was a decade ago, but even today a lot of doctors will only go with what they know - bracing and fusion. Her plan at that time was to brace my son full time until he was done growing and then fuse him and 'if that didn't work, she'd consider a (traditional) growing rod'.

    The team in Philly sees a LOT of JIS and even IIS cases. We continue to travel to Philly for follow-ups and have been doing so since late 2003. I would not be doing this if I thought he could receive the same level of care in NYC. I don't even like to think of where he'd be if I hadn't followed my gut and sought another opinion in Philly.

    Hard to believe, I know, but for this particular specialty (scoliosis in children/juveniles), I would opt for Shriners in Philly even over some of the docs in NY. This is what they do, day in and day out and they probably see more cases of scoliosis than anybody else.

    The contact info for Janet Cerrone is in my signature but I would be more than happy to 'introduce' you by e-mail if you are interested.

    Best of luck and 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/

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •