Results 1 to 5 of 5

Thread: Questions about complications with growing rod

  1. #1
    Join Date
    Mar 2005
    Posts
    2

    Questions about complications with growing rod

    Hi, my name is Kristy. I am new to this board. I had a question about the growing rod.

    First, my daughter is 6 years old and has Prader Willi Syndrome. She was diagnosed with scoliosis when she was 1 years old. Since then she has been braced about 22 hours a day, without stopping the progession of the curve.

    Her scoliosis is over 60 degrees. In January she went in for surgery to put in the growing rod. In February, we had the doctors check her because there was a discharge from her incision. They admitted her and did surgery that day to remove the rod. It broke loose from the bone and was actually poking through the skin in her back.

    Today we found out we need to brace her some more and then attempt to do this same surgery again (in 2-3 months) with extra reinforcements (wires) to keep the rod in place. We are going for a second opinion next month to see what other options are out there. Has anyone ever heard of this ever happening?

    We are really concerned about this and feel like we are at a complete loss.

    Any words of advice would be appreciated.

    Thanks,
    Kristy

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

    I'm sorry about your growing rod experience. How hard on both you and your little one. I hope she heals well and can get back to being active and as healthy as possible.

    I would suggest that you find an orthopedic surgeon who has extensive experience in treating children with multiple medical issues. Growing rods have their time and place, but maybe your daughter needs a different procedure. The VEPTR procedure is also a vertical, expandable device, but it is not fused into place, and is not placed along the spine. This allows as much growth of the spine as possible, while supporting the spine to prevent the scoliosis from getting worse. The VEPTR procedure also addresses any lung function problems she may have.

    There are several hospitals in the USA who are routinely treating children with the VEPTR implants. They are located in San Antonio, Boston, Philly, Pitts, SLC, Los Angeles and Seattle. Other hospitals are beginning to do this procedure, but I don't have a full list yet. You can find a hospital with the locations link on the site http://www.veptr.com

    My son is a VEPTR patient and has had many more benefits and a better outcome than we had ever hoped. I'd be happy to share our experiences, if you are interested.
    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
    Mar 2005
    Posts
    2
    Carmell,

    Thank you for your reply. I checked out the website for VEPTR and it sounds interesting. I will ask the doctor about it next month when we see him for the second opinion.

    The orthopedic surgeon she is going to see next month seems to be really familiar with Prader Willi Syndrome (PWS) and the complications they face with surgeries.

    According to the doctor that put the growing rod in, the complications we had are because of the PWS and soft bones. The rod broke through one of the bones in her back because she has soft bones.

    Sorry, I am not all that educated on scoliosis. I try to be but there is a lot more information out there now than when she was first diagnosed. I need to research into it more.

    Her current orthopedic surgeon seems to be fairly confident that putting the growing rod in with the extra reinforcements will work. We are hesitant about trying it again though. The only options they gave us were to try it again, brace her really well (which hasn't worked before), or to fuse the rod permantly to her spine. At 6 years old, we don't want to fuse it because of growth. So I will read some more on VEPTR and ask the doctor about it.

    Once again, thanks for the information.

    Kristy

  4. #4
    Join Date
    Mar 2005
    Location
    novato, ca
    Posts
    83
    Kristy,
    Sorry to hear about the set back. From what I know about bracing with my daughter is that it doesn't correct the curve. What it can do is to help slow down the progression. Eventually surgery is almost likely. I liked the idea of putting off being invasive as long as possible.
    This June will be Shelby's first operation with extension rods. I was just happy that she didn't have to start at age 6, but got to put it off to age 9.
    I hope everything goes better for you, Emily

  5. #5
    Join Date
    May 2005
    Posts
    1

    VEPTR comment

    Kristy,

    I'm always nervous about telling someone "this is the way you should go." Partially because I'm not a doctor, and partially because each child is unique and I don't know all of the facts, and partially because I'm afraid of being wrong. What I can tell you is what I know.

    I have been told that growth rods are prone to "breaking" the fusion where they are attached and there are risks that come with a broken rod puncturing something it shouldn't. They also tend to promote kyphosis. One of the problems that they don't seem to address is breathing problems that are caused by scoliosis (aka Thoracic Insufficiency Syndrome). My limited understanding is the ribs will mesh together. When you try to correct it with rods, brace, or anything really, you can't get any correction because the malformed ribs are holding the spine in place.

    This is something that the VEPTR procedure does different. Often they cut the ribs apart allowing the chest cavity to open up, which in turn allows for fuller breaths and bigger eaters (more room!)

    Talking with Dr. Kit Song (of Seattle Children's), I've been told that they very rarely have trouble with kids prosthetics "breaking lose", which is very different from what I've been told about the growth rods (from Doernbechers' in Portland, OR) He told me of a story of a girl being brought in by panicked parents because she had fallen out of a tree. Turns out she had a break. A broken arm. Her prosthetic was in tact and fine.

    Now, that's not to say there isn't problems with VEPTR. For one, its typical to have surgery every 4-6 months. Most of these surgeries are fairly minor, and I know of many patients that go home the same day (I've yet to have that kind of fortune with my girl)

    At the end of the day, I would advise to:

    1) Read a lot. Know as much as you can. Doctors are human and have hundreds of patients. Your girl has only one Mommy, and no one can be as good as an advocate for your child as you, make sure you do your best in that role.
    2) Get several opinions. Its likely there will be more set backs, but try to minimize the number of set backs due to "changing the plan".
    3) Always consider the risks and benefits. Why are we trying to correct the scoliosis? Is it because she has organs that will be threatened if the curve gets worse? What is our goal? Is it to make sure she's able to function well and enjoy life? I'm sure you've already thought about these things. If your child struggles to recover from surgeries, then every 4 months is probably scary. You have to weigh the benefits against the risks in every decision.
    4) Keep your chin up! Its easy for these sorts of struggles to get you down, or to slowly wear you out. You both can do it, and she needs a healthy mom with a healthy lifestyle supporting her, so take care of yourself.

    For a little more info on VEPTR: http://www.riblets.org/modules/xoops...hp?cat_id=3#q4

    I'm glad we decided on VEPTR for our girl, if it fits your girls needs, I think you'd be glad with the same decision.

    God Bless,
    Josh
    http://www.riblets.org/

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •