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  1. #1
    Join Date
    Feb 2005
    Posts
    9

    Info needed please

    Hi -- I am writing in the hopes that some of you may have some knowledge about Surgery to Remove a Wedge Vertebrae -- such as success rates, long-term effects on the child (good or bad), the recovery period, advice you can offer, things to be aware of, etc.

    Here's the background:

    Our five year old daughter has been just diagnosed with congential scoliosis, caused by a wedge vertebrae in the lumbar (i.e., lower) section of her back. As a result, she has a 40 degree curve in the lower section of her back, although it is not visible when you look at her.

    How it was found: She was being x-rayed for pain in her hip (that later went away) and the scoliosis was discovered 'by accident.' Although the curve looks very prominent on the x-ray, no one (including doctors) ever caught it when looking at her from 'the outside'. You really can't tell she has it. There are no visible signs of trunk malformation and she is very active and flexible and has no physical limitations.

    Right now, we have seen a pediatric orthopedist and are in the 'wait and see if it gets worse stage.' Our daughter is going back for a second x-ray in four months, to see if it has progressed. She will also be getting an MRI soon to look at tissues in the area, etc.

    The orthopedist thinks it is most likely the curve will become worse due to two factors: (1) that our daughter is young and there is lots of growing time left, and (2) because the curve is in the lumbar/lower section, this apparently creates more problems than curves that are higher up.

    If it does progress (and we of course hope it does not -- and the doctor said that although that *could* happen, it doesn't look likely) surgery is apparently the next/only option.

    The doctor said the most likely course would be to do surgery to remove the wedge vertebrae and 'correct' the position of her spine. If/when that happens, we do not want to rush into anything and want to learn as much as we can.

    So... have you, or anyone you know, ever had a child with scoliosis caused by a wedge vertebrae or similar malformation? How did the child progress? If surgery was done, how did it go? What were the results (good or bad)? What is the recovery period like? Any other thoughts?

    Any information you can provide would be *very* much appreciated. Thank you.

    bluehazelgray@yahoo.com

  2. #2
    Join Date
    Mar 2004
    Posts
    1,140
    Hi,

    Is your doctor planning to do an excision surgery ? Did he say that your daughter has congenital malformed vertebrae ?




    Celia

  3. #3
    Join Date
    Feb 2005
    Posts
    9

    congenital malformed vertebrae

    Yes -- it's a congenital malformed vertebrae, that's acting as a wedge. The excision would be a next step, *if* the curbe keeps geting worse. Ever know anyone with a child with a similar set of circumstances?

  4. #4
    Join Date
    Mar 2004
    Posts
    1,140
    Hi,

    I personally don't know any children who have had that surgery, but I know a few people on this forum who do. From what I hear, it's a very delicate operation that requires VERY skilled hands.

    I'm sure this whole thing has come as quite of a shock for you and I can understand how you feel. Lumbar scoliosis is not easily detected unless you know what to look for. I was told by the orthotist at our hospital that children can have a growth spurt at the age of five That sent me into a bit of a panic since my daughter is now ~ 4 1/2.




    Celia
    Last edited by Celia; 02-18-2005 at 04:04 PM.

  5. #5
    Join Date
    Feb 2005
    Posts
    9
    Thanks. I would appreciate *any* insights people may have.

  6. #6
    Join Date
    Mar 2005
    Location
    KY
    Posts
    5
    Hi Bluegrey
    I just joined and read your thread. I have a six year old son that is diagnosed with congenital double thoracic scoliosis. His is caused by hemivertebraes (that may be the same as wedge vertebrae?) in his lower/lumbar section in his back. Same in the upper curve, but that one has a lesser curve, 30 degrees. The lower is at 47 degrees. Our doctor told us 50 is considered borderline surgery.

    He has been wearing a TSLO Milwaukee brace for the past year, to hold his curvatures until he is skeletally mature. He is on his second brace, neck ring and all. Six months ago we were doing so well, his lower curve got better and was at 38. Just recently the last x-ray the Cobb angle showed it slipped back to 45 just because he grew two inches. So we are at 47 right now.

    We are in the wait and see if it progresses to 50 stage and then we know what we can expect. Surgery to remove the wedges. His next appointment is at the end of this month. Our doctor was saying they could insert a growth rod. At certain intervals when he needs adjustments, they just open up one end or the other and expand it. Going back and forth between the two incisions, doing adjustments until he is skeletally mature. Then the fusion will occur. Otherwise if we fuse it before he is done growing, he will be out of proportion (long legs, short torso).

    Please if you ever want to talk about our similar scoliosis situations between our two children, don't hesitate! God just may have led us here to find each other and maybe support one another, who knows?! I grieve over my son every day, trying to understand and be supportive to him. My email addy is Miranda386@msn.com if you ever want to talk. You are not alone!!

    Respectfully, Miranda

  7. #7
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Hi Miranda,

    I'm very interested in your post about your son wearing a brace while having congenital hemivertebrae issues. Especially in the thoracic spine. Most orthos I know of do not recommend a brace for kids with congenital malformations. A brace can't "fix" what nature didn't create correctly in the first place. Its interesting to hear your story.

    Does your son have any lung function issues? Has he had a pulminary function test? Does he get out of breath easily when running? Does he have any other medical issues? How about his kidneys - are they formed correctly? This is all very interesting because there are several opinions on how to treat these kids.

    You also mentioned that your surgeon was considering a growing rod. The old/traditional growing rods are fused at the top and bottom of the rod placement, along the spine. There is a risk of spinal cord damage because the rods are placed along the spine. There is reduced growth in the fused vertebrae where the rods are placed. Have you talked to your ortho about the VEPTR procedure? My son is a VEPTR patient. I'd be happy to share our experiences with you. My email is boulderfam@hotmail.com

    My best,
    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/

  8. #8
    Join Date
    May 2006
    Posts
    3

    5yrs old congenital scoliosis

    i am new to the computer and to email . my daughter is 5 and has a hemivertabe she as a 31 degree curve and was adveised by two different surgerns that she should have the segment removed. one felt the best way to do this was to enter from the back and the other thought it best to enter from both the front and the back. i am also looking for advise and information.

    Quote Originally Posted by bluegray
    Hi -- I am writing in the hopes that some of you may have some knowledge about Surgery to Remove a Wedge Vertebrae -- such as success rates, long-term effects on the child (good or bad), the recovery period, advice you can offer, things to be aware of, etc.

    Here's the background:

    Our five year old daughter has been just diagnosed with congential scoliosis, caused by a wedge vertebrae in the lumbar (i.e., lower) section of her back. As a result, she has a 40 degree curve in the lower section of her back, although it is not visible when you look at her.

    How it was found: She was being x-rayed for pain in her hip (that later went away) and the scoliosis was discovered 'by accident.' Although the curve looks very prominent on the x-ray, no one (including doctors) ever caught it when looking at her from 'the outside'. You really can't tell she has it. There are no visible signs of trunk malformation and she is very active and flexible and has no physical limitations.

    Right now, we have seen a pediatric orthopedist and are in the 'wait and see if it gets worse stage.' Our daughter is going back for a second x-ray in four months, to see if it has progressed. She will also be getting an MRI soon to look at tissues in the area, etc.

    The orthopedist thinks it is most likely the curve will become worse due to two factors: (1) that our daughter is young and there is lots of growing time left, and (2) because the curve is in the lumbar/lower section, this apparently creates more problems than curves that are higher up.

    If it does progress (and we of course hope it does not -- and the doctor said that although that *could* happen, it doesn't look likely) surgery is apparently the next/only option.

    The doctor said the most likely course would be to do surgery to remove the wedge vertebrae and 'correct' the position of her spine. If/when that happens, we do not want to rush into anything and want to learn as much as we can.

    So... have you, or anyone you know, ever had a child with scoliosis caused by a wedge vertebrae or similar malformation? How did the child progress? If surgery was done, how did it go? What were the results (good or bad)? What is the recovery period like? Any other thoughts?

    Any information you can provide would be *very* much appreciated. Thank you.

    bluehazelgray@yahoo.com

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