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Thread: What now?

  1. #1
    Join Date
    Jan 2008
    Location
    salt Lake City Utah, lucky enough to be close to Intermountain Shriners Hospital
    Posts
    22

    What now?

    Been awhile since I've logged on here. Jasmine got growth rods back in September. All was going well or so I thought until 2 weeks before her first extension surgery and I noticed her neck was beginning to roll forward at the top of the rods. Finally we get in for the extension surgery, x-rays are done and her Dr notices that one of the hooks has popped off at the top too. UGH! So they have to go in at the top too where they move both rods up one vertebrae and reposition them in the hopes that it will keep them from popping off again and keep her neck from rolling forward. Before going home her dr said that if her neck continues to roll we will have to look for other options of how to treat her scoliosis, namely doing a halo. What I'm wondering s if there are other options besides a halo. I've been trying to do some research but what I've found is all the options we've already tried. She'll be 10 in April, has been braced and cast since she was 1. I looked into VBS which was not an option for her (her curve is too severe, upper curve was 47 lower was 35 and her spine is getting stiff) and VEPTR but decided to go with growth rods. Mostly we went with growing rods because it was what her doctor of 8 years was recommending and I trust him. But now I fear I made the wrong decision and can't go back on it. I really don't want to do the halo mostly because I can't imagine putting Jasmine through that. Does anyone have any advice? Thanks!

  2. #2
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Deep breaths. Honestly, there isn't much to do for "rolling forward". Growing rods do not address kyphosis. VEPTR rods control kyphosis better, but not perfectly. Especially in upper thoracic/cervical kyphosis (which is what it sounds like here).

    Halo LOOKS like it is pure torture. However, all the kids I know who've been thru halo treatment get along MUCH better than the parents. Many even LIKE the halo - gravity is no longer an enemy! They have freedom to do things they couldn't before (these are extreme kids, btw). Try not to dwell on the negative and overwhelming aspect of halo treatment, if that's what she needs. I'm assuming Dr. Smith has not been consulted for another opinion now that she's post-growing rod implant? Maybe he could give you some suggestions.

    Good luck!
    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/

  3. #3
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    Hi Esa,

    I'm truly sorry to hear of the situation you find yourself in.

    I agree that your daughter would probably not be a candidate for VBS, but there are other non-fusion options available. I know, for example, that at Shriners Philadelphia patients with curves too large for VBS alone have received VBS plus a hybrid rod that is similar to VEPTR. I'm not saying THIS is what your daughter needs, only that there are sometimes additional alternatives than we're not aware of.

    Have you gone for a consult in Philly by any chance? I'd be interested in hearing what Dr. Betz has to say - he's one of the best, and has come up with some very innovative options for others.

    In any event, I wish you all the best 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/

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