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Expandable Rod Surgery for Six Year Old Boy

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  • Expandable Rod Surgery for Six Year Old Boy

    My son Will had a Chiari Decompression in December 05. His curves have progressed 10 degrees since the surgery and his doctor is now recommending expandable rod surgery with expansion surgeries every six months followed by a spinal fusion at 12 y.o. or so. He has other health issues ... Coates Disease (blind in left eye), occasional malignant reactions to anesthesia and born with a self correcting VSD. His curves are 55/43.

    We're trying to connect with other parents who have gone through this to find out about recovery, activity post-surgery and any other information. His doctor has just ordered a Providence brace that we'll get in a couple of weeks but the docs are not optimistic that the brace will arrest the curves (they could only attain 50% correction).

    It would also be great to hear from parents whose kids have scoliosis secondary to Chiari to find out what your experience has been.

    Many thanks.

  • #2
    Hi and Welcome.

    I'm sorry to hear Will's scoliosis is not improving after his decompression surgery. I know how hard it is when you are hoping for good news (no progression) and get not-so-good news.

    My Braydon is now 12yrs old. He doesn't have Chiari, but I know several kids who do. Braydon does have expandable rods which were placed at age 6yrs old (just about Will's age). He has two VEPTR rods. Did your ortho say what kind of adjustable rod he/she is recommending? There are very different types of devices available. Have you considered having an evaluation for vertebral stapling? I wonder if he would be a candidate. If his vertebrae are not malformed, and if the curves are thoracic/lumbar, and if he has good growth potential, maybe stapling would be an option. Stapling would not require as many surgical procedures and expandable rods. With his "occasional malignant" reactions to anesthesia, I'd be scared to death about sedation. But, if the docs know him and are confident they can avoid malignant reactions, this would be a minor issue.

    The recovery from any back surgery is a big deal. The initial implant of the rods usually means major manipulation of the spine. The subsequent surgeries are often done as outpatient and are not nearly as invasive. Braydon has had 12 expansion surgeries to date and has done very well with them. His quality of life has been more than he hoped. If you saw him on the street, you would never guess what his little body has been through. The VEPTR procedure has given him this great quality of life.

    I'd be happy to share more details about Braydon's experiences. There are several messageboard/email lists of families going through very similar experiences that you are. Let me know if you are interested in finding out more.

    Take care.
    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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    • #3
      Originally posted by Carmell
      Have you considered having an evaluation for vertebral stapling? I wonder if he would be a candidate. If his vertebrae are not malformed, and if the curves are thoracic/lumbar, and if he has good growth potential, maybe stapling would be an option. Stapling would not require as many surgical procedures and expandable rods.
      Hi Will's Mom,

      I believe we have corresponded by e-mail but I also wanted to provide the link to a support group for people considering vertebral stapling. The group (and the procedure) have seemingly been a Godsend for many. Here's the link:

      http://health.groups.yahoo.com/group/staplingsupport/

      Good luck - and I'll talk to you soon
      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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      • #4
        Exploring the Surgical Options

        Hi Maria and Carmell,

        Thanks very much for the advice and guidance. We are exploring our surgical options and are seeing docs at OrthoCarolinas, Emory Spine Center, Shriner's in Greenville and Dr. Tim Oswald in Atlanta.

        I'm really hoping that Will is a candidate for the vertical stapling, especially after talking with Maria. We'll know more after the 22nd. According to his first doctor, his curves are rigid.

        We've also been in touch with Shriner's in Philadelphia and hope that we can find some other option to so much surgery in light of Will's anesthesia problem and other surgeries (seven so far).

        I really appreciate having knowledgeable people to come to with questions.

        Many, many thanks,

        Lindsay

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