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Thread: upcoming surgery

  1. #1
    Join Date
    Oct 2003
    Location
    lockhart, alabama
    Posts
    2

    Unhappy upcoming surgery

    Hi!
    My name is Tracey Thompson. My daughter Lexi is due for surgery on Oct. 20 at Sacred Heart Hospital in Pensacola Florida. They will be putting "growing rods" in. I know very little about this procedure and am hoping that someone can help me out here. Does anyone have any information concerning this procedure? Please help.


    Tracey

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

    Growing rods are similar to the rods my son has. Growing rods are placed to stabilize the spine, yet avoid fusion to allow the spine to grow as the child grows. The rods will require surgical lengthening (usually every 6 months) as Lexi grows. The lengthening procedure is often done as an outpatient procedure.

    Braydon is part of the Titanium Rib Project/VEPTR FDA study. His rods not only support his scoliosis and spine from getting worse, but he has one vertical rod to keep his chest open. This gives his lungs optimal space to grow and function. Pulminary function is new to the orthopedic way of thinking. They are starting studies to document how lung size is related to lung function. Braydon's lung capacity shortly after his implant surgery (2 years ago at age 6) was 51%. One month ago prior to his latest rod expansion surgery, his lung capacity was 71%. Quite a good improvement in lung function. He is overall healthier now and has more energy and is doing very well.

    Does Lexi have a thoracic curve? Does she have congenital scoliosis (malformed vertebrae)? How old is she?

    My best,
    Carmell
    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
    Oct 2003
    Location
    lockhart, alabama
    Posts
    2
    Carmel,
    I appreciate your information. This operation, is it performed through the back or side? I don't have a consultation with Lexi's doctor until the 16th so I don't really know what to expect. Also, did any of your children have trouble walking unsupported? Lexi can walk short distances but not for long and she is stooped over supporting herself on her knees. She has been going to the physical therapist for over a year and has made a lot of progress but does not totally walk on her own. Lexi also only weighs 21lbs. Any enlightment would help.



    Tracey

  4. #4
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Hi Tracey,

    Typically growth rods are placed along the spine, through the back (posterior). They would only go through the side to access the front (anterior) part of the spine. Since they aren't fusing any of the spine (hopefully) there is no reason to get to the front part of the spine. This is a very good question to ask the doc - make sure you understand the procedure and what they plan to do.

    Has Lexi been evaluated for a tethered spinal cord? Has she had an MRI? Scoliosis alone would not give her problems with walking. Braydon had a severe congenital curve from birth (75 degrees) and walked independently at 16 months old, while wearing a TLSO brace and an AFO, following 2 clubfoot repair surgeries (at 9 months) and spinal fusion surgery (at 11 months). At age 3-1/2, Braydon was diagnosed with a tethered spinal cord. He had a tethered cord release surgery just before his 4th birthday. I'm wondering what the underlying cause for Lexi's problems are... hmm...

    Good luck! Let us know how your appt. goes on the 16th.
    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/

  5. #5
    Join Date
    Oct 2003
    Posts
    1

    hello

    my daughter Monica has congenital scolosis and has just been told a tethered spinal cord. what does this mean? We were going to have a spinal fusion which has just been put on hold because of this tethered cord. monica just turned 5. ony info would be great. thaks shane

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