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Shriner's Recomendations?

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  • Shriner's Recomendations?

    My 13 yo daughter has kyphosis with T8-T10 fused anteriorly (by God not surgeon) and ant. wedging of T11 she also has mild scoliosis. Her Dr. in Atlanta has recomended surgery. I want to get a second opinion from Shriner's. I'd like to get some feedback from those of you who have knowledge of the Kentucky and/or South Carolina Shriner's Hospitals. Does anyone know if a particular Shriner's specializes in spine surgeries vs other orthopedic conditions? The Dr. in Atl. told us that he has never seen this conditon before. He had her worked up by a Ped. Rheumatologist for ankylosing spondylitis but that was negative. I just don't have a good feeling about this. Help!!!
    Mom to Chelsea - 13yo with 60 degrees kyphosis due to Sheuremann's Disease. T8-T12 have fused together (on their own) anteriorly.
    Dr. Betz (Shriner's Philladelphia) states that she needs anterior release and posterior fusion
    .

  • #2
    Hello and Welcome,

    We travel from NY to the Shriners Hospital in Philadelphia for my son's care. I would strongly recommend them. Dr. Betz and Dr. D'Andrea are the two spine specialists and they treat complex spinal disorders on a regular basis. Sometimes kids from other hospitals are even referred to Philly because they offer procedures and treatments not available elsewhere.

    Please feel free to e-mail me if you want more information. It's mariaf305@yahoo.com.

    Good luck
    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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    • #3
      I agree with Maria. The team of orthos at Shriners in Philly will have seen a case similar to your daughter. You will want to have someone with experience treating her. That is very important. Also, you want to have any surgery (if surgery is needed) at a facility that knows how to take care of the post-op needs of these kids. Good luck and let us know how things go.
      Carmell
      mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

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      • #4
        I agree!

        I flew my daughter from MI to Phili to Dr. Betz at Shriner's hospital in 2003. At that time, he was doing procedures that no one else in the world was doing (i.e. vertebral stapling as an alternative to bracing). I can't imagine seeing any kinder, more skilled surgeon anywhere. My daughter, Sarah, is too old at 22 to be seen there now but I will always appreciate his patience, honesty, and generosity and so will she.

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        • #5
          hi! My name is Leelee and I go to the shriner's hospital in Lexington, Kentucky. My experiences there have been pretty good. The hospital is rather small, but I think that kind of makes it better. The nurses and everyone are all very nice, and it's very kid-friendly. The only bad thing I can say about shriner's is that they are very very busy, they deal with a lot of kids with very very serious issues, and a lot of times some one like me, who just has regular idiopathic scoliosis gets pushed aside a lot so that they can deal with the more serious patients. You have to wait a long time to get an appointment, and they are really slow. Like if you have an appointment it takes like the entire day. I even live right in Lexington and when I have an appointment I have to count on missing the entire day of school. But I guess that doesn't really matter for you guys beause I'm assuming you live far away from Lexington anyway, because you mention a doctor in Atlanta. But over all I'd recomend shriner's, I see Dr. Henry Iwinski there, he's really nice, but a lot of times I end up not seeing him, I end up seeing another doctor or an intern or something. That's another I don't really like. But I still think it's a really good hospital, with nice staff, and a pleasant surrounding.
          ~Leelee ♪
          [-] 17 years old
          _[-] 12th grade
          [-] scoliosis, 45T and 42 L
          _[-] kyphosis, 67*
          [-] Boston brace for 4 years
          _[-] Stopped 6/8/05 at 4:32 PM

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