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Thread: not sure what to expect

  1. #31
    Join Date
    Aug 2006
    Posts
    10

    kyphosis question-rigid spine?

    Hi, all! My son has had 2 surgeries, been thru several rounds of chemo, and has worn a milwaukee brace for 14 months now. He was just fitted for a new brace, and the "brace guy" ( affiliated with a Shriner's hosp) was unable to get the correction he wanted for the kyphosis and said they suspected his curve has become "rigid"...what exactly does this mean?

    I haven't posted for some time because the scoliosis end of his care has been on the back burner, but now it's time for me to start researching again, given this latest potential development.....Anyone? Carmell? We still have to see the orthopedist again to confirm/deny the rigid diagnoses....but thought I'd do a little investigating in the meantime.

  2. #32
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Hi again, Dawn,

    Sounds like you have been busy the past year and a half. Hopefully your son is healthy and able to work on scoliosis/kyphosis treatment now.

    A rigid spine means there is little flexibility in the ligaments/disk space between the vertebrae. If he were laying down, can they manipulate his back to a more correct position? If not (or if very little) then they would label his spine as rigid.

    When is your next appointment with the ped. ortho? I know the Erie Shriners has been going through changes in surgeons. Would you consider going to Shriners in Philly? They may have more experience successfully treating kids like him. He's still very young with lots of growth remaining. You want to find someone who will be able to follow him for years to come and give you the best recommendations to meet his unique needs.

    Kyphosis (the forward bending, hunchback position) is often more difficult to treat than scoliosis (side to side curve of the spine). When you talk with the doc again, make sure you understand the kyphosis condition and understand the long term "plan" for him. Hopefully someone will be able to explain it to you so you understand well.

    Take care 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/

  3. #33
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,762
    Hi Dawn,

    I just wanted to comment on Carmell's suggestion to consider going to Shriners in Philly. I know there have been some changes in Erie and it's true you should be with someone who will be there for the long haul and have a long-term plan. You'd be hard pressed to find someone with a better vision on what's best in the long run for kids with complex spinal issues than Dr. Betz. He's always involved in the latest technology - whether it's VEPTR II, VBS, etc. He's one of a small group of orthos around the country that seem to be "a cut above" the rest. He has been overseeing my son's care for four years and we couldn't be happier with him.

    Good luck!
    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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