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Thread: Newbie: need info about congenital kyphosis scoliosis

  1. #1
    Join Date
    Oct 2006
    Posts
    2

    Newbie: need info about congenital kyphosis scoliosis

    I have 10-month old twin boys, Ryder and Cage, and from the moment Ryder was born I noticed a small bump in his back. They were 2 months premature and spent 2 weeks in the NICU to learn how to suck properly. We felt very lucky because there were no other issues with the boys, or so we thought.

    My husband and I both work for the studios and were under the impression that we had the best insurance until I had to go to their network of pediatricians. We only had one choice and that was Valencia Pediatrics, a group of 8 doctors who have the monopoly out in Santa Clarita, CA. I saw almost every doctor there and repeatedly pointed out the bump and the fact that Ryder seemed to lean to the right. I was told I was a paranoid new mother who was just having a hard time adjusting to her new life with twins. Needless to say I told them where they could go and found a new pediatrician who I adore. She immediately agreed that something seemed wrong and sent me to Dr. Skaggs at Children's Hospital. Ryder was diagnosed with congenital kyphosis scoliosis at 4 months with the curve centered on L3 which is where the hemivertebrae is located. We recently returned to Children's for new x-rays which showed his curve has worsened since July from 22 to 28 degrees. He not only leans to the right but forward as well and the bump in his back is getting worse.

    We scheduled an MRI and CT scan for Dec. 15th and I'm just beside myself because the thought of putting him under scares me to death. He will have to have surgery soon and the potential risks and complications are overwhelming. I've research kyphosis and know it is more serious than just scoliosis but that is about all I've found. I would appreciate any info or personal stories to help me better understand what we're in for. I don't even know what to ask the doctor!

    Thanks!

  2. #2
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Welcome!

    First, take a few very deep breaths and relax. You are not alone. There are a handful of families dealing with very similar issues that you are. In fact, I have a mom who I'd like to connect you with. Her little one was born in February 2006 and has a very similar lumbar kyphosis. Let me know if you are interested.

    Even tho Dr. Skaggs is a great surgeon, I would encourage you to get another opinion, just so you understand fully the recommendations and why. Kyphoscoliosis is not common. You want to make sure you have 100% confidence in the recommendations being given to you.

    I also saw that you signed up for the CongenitalScoliosisSupport yahoo list. There are several families in various stages of treatment for kyphosis who can help by sharing their experiences. I look forward to reading your introduction there.

    BTW, my Braydon was born with congenital scoliosis and has had several surgeries to keep his body well-balanced and his chest supported. His congenital malformations are in his thoracic spine, potentially affecting the lungs, etc. I'd be happy to share our experiences with you, if you are interested. Feel free to email me privately at boulderfam@hotmail.com
    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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