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Thread: new to all of this and i could use help

  1. #1
    Join Date
    May 2006
    Posts
    3

    Unhappy new to all of this and i could use help

    hi i know i am making a mess of this i dont even know how to use this for em of web sight. i keep looking for instructions but i can't find any.

    my daughter is 5 and she has congenital scoliosis. we have already gone to see two different doctors on long island, NY. they both feel surgery is necessary. it makes sense but what questions should i be asking?

    they both want to remove the hemivertebrae and fuse the segment with screws. one of the doctors wants to enter only from the back and one wants to enter from the front and the back.

    the two doctors are

    Wesley V. Carrion- stonybrook,ny
    Ronald Lewis -East meadow, NY
    David Feldman- NY,NY we have an apt with him in two weeks.

    please if you know any thing about these doctors let me know.

  2. #2
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Welcome,

    Congenital scoliosis is not a common condition. There is a great email list for parents (and adult patients) who have congenital scoliosis issues. You can sign up for this Yahoo group here: http://health.groups.yahoo.com/group...liosisSupport/

    I don't have personal experience with the docs you mentioned. You would want to ask questions that are specific to your daughter, especially if she has any other medical issue that would complicate scoliosis treatment.

    Ask things like when will we schedule a full-spine MRI? Do we need to have her kidneys examined (kidneys develop around the same time the bone structure of the spine does during fetal growth)? What is the long term prognosis for her if we choose posterior only surgery? What about anterior and posterior surgery? Where is the hemivertebrae? If it's a lumbar vert, the excision procedure is relatively common. Is the scoliosis progressing? Is the spine stable? Is her overall body balance stable? What are the risks of future progression if we choose no surgery now?

    Good luck and keep us posted.
    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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