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Thread: Syringomyelia What to do??

  1. #1
    Join Date
    Mar 2006
    Posts
    3

    Syringomyelia What to do??

    About 10 am this morning my DD care specialist from shriner's tampa called and said that My DD has Syringomyelia.
    She cannot have her scoliosis surgery until this is taken care of. She is at 57. I am waiting to hear when the appt is with the neurosurgeon which will be in St Pete.
    We live in Mary Esther, Florida at the top of Florida near Pensacola and Mobile, Al. and all our appt are in Tampa and St Pete. This is 8+ hour drive for us.
    When it was decided that surgery was the next step we never realized that we would find other things in her body.
    I thank God that she doesn't understand everything. She is slightly mentally disabled and has the best attitude. She just goes with the flow. If it has to be then it is.
    Yes, I am a Christian. The past few months I have really come to realize that God gave me this precious child to make my life better. Even when she is driving me crazy, and she does, I can look at her smile and know that she is here for a reason.

    Thanks for letting me vent
    Rose

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

    Try to take this all one step at a time. You and your DD and your family are not alone dealing with scoliosis and syringomyelia issues. I don't have personal experience with syrinx issues, but I know several children who have had surgery to drain the excess fluid. They have all had very good results and recoveries. I would ask lots of questions. Since you live so far away from the docs, see if you can call ahead with questions or at least get information so that when you do make the trip to Tampa/St. Pete, it will be a successful one! We try to do the all-in-one shopping with doc appointments - it helps a lot.

    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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