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Thread: congenital scoliosis

  1. #1
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    May 2007
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    Question congenital scoliosis

    Hi, I am new to this forum. My 12 year old daughter was diagnosed with congenital scoliosis while I was pregnant with her. She was born with a hemi-vertebra. She had surgery at 2 1/2 years of age. She had a fusion performed at Shriner's Hospital. She was fused at L3-L5. Her curve had progressed to a 36 degree curvature.
    Now we are dealing with a curve occuring above where she was fused. This curve has progressed to a 60 degree curve. The doctors have told us that they just want to watch her because she has started her menstual cycle and they believe her curve will hold at this. Have any of you dealt with this? If so what happened? I certainly do not want her to have another surgery if she doesn't need one, but am concerned that it will not stop.
    Thanks,
    Mother of Bethany age 12

  2. #2
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    Apr 2007
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    Seattle, WA
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    My son is also 12 & has a hemivertebra @ T10 causing a thoracic curve of 45 degrees & a lumbar, compensatory curve of 60-65 degrees. I've had 4 surgeons recommend fusion surgery which we have scheduled for the middle of July. But my son is not done growing at all like your daughter may be. It would be great for her if she doesn't need another surgery. If she ever does need it though, at least she'll have grown as much as possible & be older. I wish my son could wait but apparently his curves have a high probability of getting much worse over the next year as he continues in his adolescent growth spurt. Good luck with your "waiting & seeing"!
    Laurie

  3. #3
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    May 2007
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    Talking Good Luck

    Laurie,
    Thank you for responding. It is comforting to know that there are other parents out there going through this with you. We will keep your son in our thoughts as you face this surgery. My daughter did very well with her fusion and I hope that your son will too.
    Thanks again,
    Shana

  4. #4
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    Oct 2003
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    Utah
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    Hi Shana,

    Welcome. I'm happy to hear your daughter had a successful fusion at a very young age. Good job.

    My son had fusion surgery at a young age also - he was 11 months when he had a/p fusion (T5-L1). His torso/trunk is quite a bit shorter than it should be. Did your daughter's fusion cause her body to be shorter than it should? Visibly shorter?

    Sometimes kids with congenital malformations in one area have a weaker spine up and down from the fused area. Braydon's spine is "visibly weak" according to the ortho. The ortho was not surprised that Braydon developed a compensatory curve below his fused area just because of the makeup of his spine.

    I know you've probably had quite a history with your current ortho, but I was wondering if you've considered getting a second opinion about the compensatory curve? I don't think it would hurt, and you would have more information to use to make your decisions. I also hope that because she's closer to skeletal maturity that her curve won't continue to progress. I wonder about that. I'd want to make sure the ortho has lots of experience with kids like her.

    Good luck and keep us posted.
    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
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    May 2007
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    Shana

    Hi Carmell,
    Thanks for responding. The doctors are very surprised by Bethany. They tell us that with the degree of curvature that she has she should have a shoulder lower than the other and her hips should not be level, but that is not the case. If Bethany is wearing a tight fitting shirt I can tell but no one else can. We have had her under the care of a local ortho and now we have her back at the Shriner's Hopsital because that is where she had surgery.

    Does your son complain with any back pain? Bethany is very stiff sometimes and says her back hurts. The doctors tell me she should not be having pain. I am not sure anymore what to believe.

    The surgery that they would do this time is to put rods in. That really scares me; although I have heard people do really well. I have rods in my back and do not want that for my daughter.

    I also have other concerns with Bethany. I have Degenerative Disc Disease and have had 3 surgeries and I am facing my fourth. Does anyone know how that would affect someone with congenital scoliosis?
    I appreciate your responding. It really is comforting to know that people are going through the same thing as you.
    Shana
    Mother of Bethany, age 12 Lumbar fusion 2 1/2 years of age

  6. #6
    Join Date
    Oct 2003
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    Utah
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    Hi Shana,

    I don't mean to discount any of the docs you've seen already, but it really sounds like they don't have much experience with CONGENITAL scoliosis and the long term implications that may mean. Braydon's congenital thoracic curve is fused solid at 65 degrees. If you saw him, you'd never know it. His shoulders are even, his hips are even, when he wears his shoe with the lift he has no limp at all, nothing. His spine is just curved and rotated some. Docs who see his xrays, then see him, are amazed that its even the same kid.

    Which Shriners did her fusion surgery? Fusion with rods (typical teenage scoliosis surgery) is a HUGE deal. You know personally what its like to have rods in your back. Your experience sounds like its not been a perfect situation. I do worry about Degenerative Disk Disease (DDD) with Braydon, but in MOST cases, it is from areas above and below fusions - the wear and tear on the UNfused disks in the spine.

    Braydon rarely has back pain (knock on wood). When he did have back pain, it was from a tethered spinal cord (and some discomfort due to growth spurts that restrict the rods before lengthenings are done). Scoliosis itself shouldn't be painful. Things that cause back pain could be nerve issues or pulling/tension on the muscles and soft tissue. If its chronic pain, you will want to find the source of the pain. Having scoliosis shouldn't be a painful thing. Does she ever complain of leg or foot pain/tingling? Does she ever have changes in her bladder or bowel habits? Is her back pain in the low mid-section of her back?

    I bet no one has mentioned the statistics that as many as 25% of kids with congenital scoliosis (especially with lumbar malformation) have some type of tethered spinal cord (TC). A TC would cause one or all of the above mentioned symptoms. Bethany is at the prime age for outward signs/symptoms of a TC to happen. Did she have a full-spine MRI done before they did her fusion as a toddler?

    Has Bethany seen a pulminologist or had pulminary function tests done to make sure her lungs are healthy and strong? Scoliosis surgery in older kids is a big deal. If I were in your shoes, I would make absolute certain this was the right procedure for her, at the right time, by the right doc. I still think getting another suggestion from a ped. ortho who has lots of congenital scoliosis experience is a good idea. Doesn't mean you need to change anything. Just means you will get more informaiton, likely.

    Good luck.
    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/

  7. #7
    Join Date
    May 2007
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    Shana

    I appreciate your responses and the information that you have given me to check on. We use the Shriners Hospital in Greenville, SC. That is the nearest to our home. I will be asking more questions because of the information that you have given me. We have had other orthos check her but unfortuanatly the area we live in does not have a pediatric ortho. We have to travel 6-7 hours which we are considering doing with the information that you have given us. We all just want the best for our children.
    Bethany has not had any changes in bowel movements that I am aware of, but it is something that I will pay closer attention to. YOu are right when you say that the doctors that we see are not that familiar with congenital scoliosis because Bethany is one of a handful that this hospital has seen. She was one of two when we took her the first time, but the chief of staff had seen cases before. He handled her case. Bethany has never had a full MRI only x-rays. Do you think that I should push for her to have one? Her pain is not severe just irritating is how she describes it. She does have asthma and is under the care of a doctor for that. We have had a scan done of her kidneys and had her heart checked because those are things that develop when your spine does.
    I really appreciate your responses and the information that you are giving us. We had the surgery when she was small and was told that we just needed to do x-rays every 6 months and watch for the next growth spurt. No one ever told us that there was a possibility of a compensatory curve occuring just that she may have to have surgery when she was older and had a growth spurt. Her compensatory curve jumped from around 20 degrees to 42 degrees in Sept of 2006 then to 60 degrees in December and has held the last two times she has had x-rays.
    I will be doing more to find answers with the doctors that we may go to.
    Thanks,
    Shana

  8. #8
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    Oct 2003
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    Utah
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    Me again,

    As you already know, Greenville Shriners isn't one of the top places for kids with congenital issues. They are good for generic scoli issues, and other orthopedic things, but not this. You are going to have to go out of state to find someone who treats congenital cases routinely. Maybe you can call a Shriners facility that knows about congenital scoliosis and see about transferring, at least for a consultation. The Shriners in Philly would be a great place for you to go, if you can work it out. Drs. Betz, D'Andrea and Samdani are all very good. Dr. Samdani is a neurosurgeon, but works closely with the orthopedic surgeons with congenital scoliosis patients.

    I do believe she needs a full spine MRI. The intermittent/irritating pain needs to be addressed. If the MRI is normal (I'm assuming it will be) you will have some peace of mind knowing that if she does need more spine surgery, there aren't any spinal cord issues that would complicate it.

    You mentioned she has asthma. Is the doctor treating her for asthma a pulminologist? Especially since she has asthma and a 60+ degree thoracic curve, getting a pulminary function test done to determine her "baseline" lung function is a good idea.

    Again, it sounds like you need to get a better understanding of Bethany's entire spine situation before making any decisions about surgery or intervention. Good luck and keep us posted. Feel free to email me directly if you want more of my ramblings - LOL 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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