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What is Congenital Scoliosis?

In response to many questions NSF has received about congenital scoliosis, we recently interviewed Dr. Robert Winter with the Minnesota Spine Center, Minneapolis, and a Founder and past President of the Scoliosis Research Society.

Q: Dr. Winter, would you begin by providing us with a definition of congenital scoliosis?
A: Doctors would describe it as a condition due to congenitally anomalous vertebral development, but it's easier to say it is a curvature of the spine caused by birth defects in the spine itself.

Q: What sorts of birth defects cause congenital scoliosis?
A: The most common birth defect is called hemivertebra, which means half of one side of a vertebra forms while the other side doesn't. Another defect is called a unilateral bar, a condition where you will find three to four vertebrae stuck or fused together on one side. At present, no one knows what causes these defects.

Q: In the case of hemivertebra, how does it create a curvature?
A: All growing bones have growth centers, but if you're born with half a bone on one side and the other side is missing, the side with the growth center will grow faster than the other, and you end up with a curvature.

Q: Does congenital scoliosis occur more often in girls than in boys?
A: Yes, it occurs about 60% of the time n girls, 40% in boys. We do not know why this is so

Q: When are doctors most likely to see signs of congenital scoliosis in children?
A: We seldom see it at birth unless an x-ray has been taken for some other purpose, such as pneumonia, or unless the child is born crooked. I have seen a few children a week old who had 40-50 degree curves, but that's fairly rare. More than likely, we'll see it show up later in life--for example, in a teenager who's going through the growth spurt.

Q: In the case of the teenager, how would you know the youngster had congenital scoliosis and not idiopathic scoliosis?
A: When you look at an x-ray and see abnormal bone, you know is congenital. With idiopathic scoliosis, you won't see any abnormal bone. As your readers will recall, idiopathic means a disorder that has no known cause.

Q: How many individuals in the U.S. population are affected by congenital scoliosis?
A: Congenital scoliosis is not a common problem: approximately one person in every 10,000 is affected, and that number has remained fairly stable over the years.

Q: Do congenital curves always worsen?
A: No. A small number, only about 1-2 % of congenital curves, will get better by themselves. Another 2.5% stay right where they are and never require treatment, though we will monitor these twice a year with x-rays to make sure they've stabilized. Roughly 75% do worsen and require treatment.

Q: How far would a congenital curve have to progress for you to begin thinking about treating it?
A: There is no magic number of degrees, quite different from idiopathic. If it's progressing, it needs treatment!

Q: Would you tell us about the treatments that are available for those who's curves get to that point?
A: Treatment of congenital is quite different from treatment of idiopathic scoliosis. For example, with congenital bracing seldom works; the bones themselves are crooked or deformed and a brace on the outside simply can't affect a discrepancy on one side or the other of the vertebral column. The only treatment that works is surgery.

Q: Tell us about the surgical techniques.
A: As I've said, with congenital scoliosis, one side of the spine is growing faster than the other, so to solve the problem- -since we cannot put growth tissue in a place where it doesn't exist--we do anterior (front) and/or posterior (back) 'growth arrest' surgery. Basically, this means we fuse the outside convex side of the curve, perhaps 4-5 vertebrae in all. By doing this, we stop the growth in the fused area.

Q: How does this affect a child's future growth?
A: It will affect future growth, but remember--the right surgery at the right age will give the child a taller spine than he would have had without surgery.

Q: Do surgical patients usually wear post surgical brace or cast?
A: Because we're fusing a portion of the spine, and we're not usually inserting rods and/or wires that would help stabilize the healing spine--we really must have these patients wear post-surgical braces or casts for protection.

Q: What is the likelihood of a surgical patient having to undergo more surgery later in life?
A: Two-thirds of the time, one early surgery solves the problem and the child will bounce back with incredible speed and grow up well after the problem is solved. Roughly 33% of the time, there will be an additional operation.

Q: Do the alcohol or drug habits of parents cause congenital scoliosis?
A: We are starting to see some cocaine babies with congenital abnormalities, but in our Center, we haven't seen any congenital scoliosis that appears to be related to, say, marijuana or heroine use, or alcohol abuse.

Q: Is congenital scoliosis hereditary?
A: Ironically, congenital is much less hereditary than idiopathic scoliosis, but we don't know why. One of our surveys of 1,200 patients from our clinic showed there were only 12 hereditary situations. Interestingly, in identical twins, it's extraordinarily unusual for both twins to have it; it's more common that one would have it and the other wouldn't.

Q: Do you expect the treatment of congenital scoliosis to change or improve in the future?
A: In the last ten years, we've seen an explosion of better surgeries for these individuals. In my training period, for example, all you could do was a fusion, but now you can actually take out the hemivertibra and do a local correction. That use to be considered dangerous, but with recent advances with spinal cord monitoring and other techniques, it's a fairly common and quite safe procedure.

Q: Are there any prenatal tests which pick up signs of congenital scoliosis?
A: At our Center, we've only seen one child whose congenital scoliosis was picked up on ultrasound, but that's pretty rare. Unfortunately, congenital scoliosis defects are subtle--there's so much cartilage relative to the amount of bone that the anomalies simply don't show up.

Q: What other problems might one find in conjunction with congenital scoliosis?
A: Congenital scoliosis patients tend to have other problems as well, such as kidney dysfunction's or urinary tract abnormalities. In fact, 25-30% of patients have kidney-bladder problems as well. 40% of patients have other nomalies of spinal cord development. 10% have congenital heart problems.

Q: Is there pain associated with congenital scoliosis?
A: No.

Q: Can physical therapy help reduce or stabilize a congenital curvature?
A: This has been tried, but no, it doesn't help at all.

Q: Are there any signs that parents might look for?
A: There may be signs such as a rib hump or a small "bump" on the back. There may be foot problems, such as a club foot, which could be a tip off. Quite commonly, one will find a hair patch somewhere along the spine. If you notice any of these signs, take your child to a scoliosis specialist immediately.


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