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Thread: Help with congenital scoliosis

  1. #1
    Join Date
    Jan 2011
    Posts
    2

    Help with congenital scoliosis

    I live in North Florida. I have an 18 month old that has been diagnosed with congenital scoliosis. He has a hemi vertebrae and several segmented vertebraes. At his last scan he was 23.5 degree curve. I have been in contact with Shriners in Tampa and it is out of their scope. I have been using Shands at UF and I am a little aggitated by them. I am looking for recomendations on doctors. Anything would be apreciated. Also trying to understand what we are in store for.

  2. #2
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,762
    Hi,

    I was a bit surprised when you were told by Shriners Hospital in Tampa that your child's case was 'out of their scope'. What about recommending a doctor at another Shriners Hospital? Shriners often will do that if the child needs a sub-specialty. For example, I know the staff at Shriners Philadelphia has treated all sorts of complex scoliosis cases, including congenital scoliosis, infantile scoliosis, etc. Perhaps you could even find a Shriners Hospital closer to you that would be able to help - it's just that my experience has been with the Philadelphia Hospital (who are awesome by the way).

    Another suggestion I have is to check out www.infantilescoliosis.org. There are links to several other sites there as well.

    I believe there is also a specific support group/forum for parents dealing with congenital scoliosis but I don't have that exact information. However, if you like I can try to get it for you.

    Best of luck and please keep us posted.
    mariaf305@yahoo.com
    Mom to David, age 16, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently holding in mid 20's)
    Under the care of Dr. Randal Betz since 2004
    http://www.spineandscoliosis.com/the...dal-r-betz-md/

    Link to VBS Website: www.vertebralstapling.com

    Janet Cerrone, PA to Dr. Betz jcerrone@spineandscoliosis.com or (609) 912-1500

  3. #3
    Join Date
    Mar 2005
    Location
    Ukiah CA
    Posts
    740
    at also the shriners I know the staff at Shriners Sacramento has treated all sorts of complex scoliosis cases, including congenital scoliosis, infantile scoliosis, neuromuscular. from my experience at Shriners Sacramento most of the leaders in scoliosis works there. even the surgeon i have now works there he treats both kids and adults. kids and teens at shriners and adults at uc davis
    Last edited by kennedy; 06-28-2011 at 02:25 AM.
    Kara
    22 years old
    Posterior Spinal Fusion March 10,2010
    Foot Surgery November 25,2014

  4. #4
    Join Date
    Jan 2011
    Posts
    2
    The Tampa facility is the one that said it is out of their scope. They did refer me to the Philadelphia facility. However due to work, money and personal issues I don't know that travel is possible. I was hoping to stay in Florida but if that isnt possible I will make Philly possible.

  5. #5
    Join Date
    Nov 2010
    Location
    British Columbia
    Posts
    929
    Quote Originally Posted by tmcwatters View Post
    The Tampa facility is the one that said it is out of their scope. They did refer me to the Philadelphia facility. However due to work, money and personal issues I don't know that travel is possible. I was hoping to stay in Florida but if that isnt possible I will make Philly possible.
    You have to go where you have to go. No one in my province was going to do anything about my son's SEVERE scoliosis so I applied to a charity hospital (Shriners in Portland, Oregon) and they are now seeing my son. It's two states down and across the border but that's fine by me. I am so thankful to the BC/Yukon Shriners who have been with me all along the way.
    Son 14 y/o diagnosed January 20th. 2011 with 110* Curve
    Halo Traction & 1st. surgery on March 22nd. 2011
    Spinal Fusion on April 19th. 2011

    Dr. Krajbich @ Shriners Childrens Hospital, Portland Oregon



    http://tinyurl.com/Elias-Before
    http://tinyurl.com/Elias-After

  6. #6
    Join Date
    Nov 2010
    Location
    San Diego, CA
    Posts
    104
    Best Wishes to you! A lot of people do travel. I know it's hard. At least you can drive. There's a Ronald McDonald House in Phila associated with Shriners. We're flying to Philadelphia in April for a consult. Your child is fortunate to have you advocating for them!
    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

  7. #7
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,762
    To add to what Elisa and Resilience put so well, please keep in mind that Shriners may be able to help with travel. Perhaps Elisa knows more about this as she is currently dealing with her local Shriners. In fact, I was going to suggest getting in touch with your local Shrine temple to see what, if any, assistance they can offer in terms of travel and travel expenses.

    There are 3 Ronald McDonald Houses in the vicinity of the Philadelphia Shriners Hospital. I know that it's a long way to travel and there is much to consider, but they make it as easy as possible to be away from home - and, with a little help from Shriners, it might not be as daunting a task as you think :-)

    Best of luck and please keep us posted.

    If you have any questions about the Philly hospital, please also feel free to e-mail me. We have been going there for over 7 years and the care has been top notch all the way.
    mariaf305@yahoo.com
    Mom to David, age 16, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently holding in mid 20's)
    Under the care of Dr. Randal Betz since 2004
    http://www.spineandscoliosis.com/the...dal-r-betz-md/

    Link to VBS Website: www.vertebralstapling.com

    Janet Cerrone, PA to Dr. Betz jcerrone@spineandscoliosis.com or (609) 912-1500

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