Scoliosis and Spinal Deformities:
A Guide for Patients
If you or a member of your family has a spinal deformity you probably have questions and concerns. The doctors and nurses in the Children's Hospital Spinal Deformities Program have prepared this booklet to help answer your questions. In it we describe spinal deformities and explain both non-operative and surgical treatment.
Your orthopaedic surgeon and nurse are ready to answer your questions and to help you understand your particular spinal abnormality and treatment. This booklet is not meant to substitute for discussions with the doctor or nurse. No question is too simple to ask. Please write down any additional questions you have and bring them when you come for your next appointment. We welcome your questions.
What is the spine?
The spine is made up of many individual bones called vertebrae, joined together by muscles and ligaments. Flat, soft intervertebral discs separate and cushion each vertebra from the next. Because the vertebrae are separate, the spine is flexible and can bend. Together the vertebrae, discs, muscles, and ligaments make up the vertebral column or spine. Different regions of the spine are named differently. The cervical spine refers to the neck, the thoracic spine to the chest, and the lumbar and sacral spines to the low back.
What are normal spinal curves?
Just as the shapes of peoples' bodies differ, the normal spine varies in size and shape. You may have been told to "stand up straight," but no one's spine is perfectly straight. The healthy spine has front-to-back curves. It's only when these curves become too large that they present a potential problem.
When the backward curve in the upper spine is too great, the condition is called thoracic hyper-kyphosis, round back, Scheuermann's disease, or sometimes simply kyphosis. When there is not enough backward curve in the upper spine, the condition is called hypo-kyphosis. When the inward curve in the lower back is too great, the condition is called hyper-lordosis or swayback.
What is scoliosis?
Although the spine does curve from front to back it should not curve sideways very much. A side-to-side curve is called scoliosis and may take the shape of an "S" (double curve) or a long "C" (single curve).
Scoliosis is more than just a curve to the side. The scoliotic spine is also rotated or twisted, like the stripes on a barber pole. As the spine twists it pulls the ribs along with it, so that one side of the chest becomes higher than the other, or the shape of the breastbone may change. You may have noticed that one of your shoulders is higher than the other or that your clothes hang unevenly at the waist because one hip is higher than the other. To better understand this, compare the drawings of the normal spine and the scoliotic spine. Many people with scoliosis also have hypo-kyphosis. Because of all the possible combinations of curvatures, scoliosis can be very different in different people.
What causes abnormal spinal curves? 
There are many different causes of abnormal spinal curves. Some babies are born with spinal defects that cause the spine to grow unevenly, a condition called congenital scoliosis or congenital kyphosis. Some children have nerve or muscle diseases, injuries or other illnesses that cause spinal deformities, for example cerebral palsy, or myelomeningocele.
Sometimes, however, the back just doesn't grow as straight as it should, and no one knows why. This most common type of scoliosis is called "idiopathic" scoliosis and has no known cause. There is no known prevention. This means that if you have scoliosis, nothing you did caused it, and you could have done nothing to prevent it.
Scientists are studying idiopathic scoliosis, hoping to discover its cause. They have many clues but no real answers yet. They do know it tends to run in families and that girls are eight times more likely to have it than boys. Scoliosis isn't rare, it affects about one in every ten people. Many people have mild scoliosis but are unaware of it and need no treatment for it.
Observation: Keeping watch on curves
Idiopathic scoliosis doesn't happen all at once, it develops gradually over time, and may worsen rapidly during rapid growth in the pre-teen and teen years. Some mild curves never worsen with growth and need no treatment. Some curves worsen only a little and need no treatment. Early detection of abnormal spinal curves by school screening programs and pediatricians is intended to find scoliosis early enough to begin brace treatment and avoid surgery. Once an abnormal spine curve has been detected, it is important to monitor the curve during growth.
The years before and during adolescence are a time of rapid growth and your curve can worsen quickly. Your doctor will decide on your treatment plan and follow-up based upon your x-rays and physical exam. Even though your curve may not bother you now, it needs to be watched all through your growth. Your doctor will show you the curve on your x-rays to help you understand how he measures the degree of curvature and its change.
Why treat scoliosis? Avoiding future problems:
Scoliosis rarely seems a problem to the child or adolescent who has a curve. Why then do we bother to monitor and treat curves? Adults with moderate or severe scoliosis can have progressively worsening curves which cause cosmetic disfigurement, back pain and in the worst cases, difficulty breathing. Treatment after the curve has already become severe in adulthood is much less successful than treatment during childhood or adolescence. By finding progressive curves early, we hope to keep them from becoming problems in adulthood.
Treatment without surgery: Exercises and braces
The treatment of scoliosis depends on the location and degree (severity) of curvature. Slight curves (curves measuring less than 20 degrees), usually require no treatment, but must be watched carefully for worsening during growth. If your curve shows significant worsening or is already greater than 30 degrees, and you are still growing, your doctor will probably recommend a bracing program.
The scoliosis brace is designed especially for you and your particular curve. It holds your spine in a straighter position while you are growing to try to partly correct your curve or prevent it from increasing. A bracing program may help you avoid surgery. You will need to wear your brace almost all the time until the end of growth. Almost all braces can be hidden beneath normal clothing, and you can continue to do all athletic activities. Usually there are other adolescents in your school who wear braces, but since you can't see their brace you don't know it!
Your doctor works with a team of professionals who
help you adjust to this treatment since a bracing program can be difficult and you may need help in organizing your activities and school day. The team offers both support and experience in guiding you through the process. The team includes your doctor, orthotist (a specialist who makes braces), a physical therapist, and a nurse. Your doctor and the orthotist decide which brace design is right for you. The braces are made of firm plastic and fit closely over the hips, and are worn under clothes. A few have metal pieces extending to the chin, but these are usually only necessary to treat hyperkyphosis and are usually worn part time.
The physical therapist evaluates your posture, muscle strength and flexibility and gives you a home exercise program which is designed specifically for you. This program helps to stretch and strengthen your muscles so you are more comfortable in your brace. Each time you visit the clinic, you see the physical therapist.
The nurse helps you and your parents with all your questions and your appointments. She teaches you how to care for yourself and your brace, gives you a schedule to follow, and helps you plan your day-to-day activities. If you are interested she will also help you meet others who wear braces. Following a brace program may sound like a lot of work and effort, but if your curve can be controlled with a brace and you can avoid surgery, it will be worth it!
Surgery
Some curves do not respond to bracing despite everyone's best efforts, and some curves are just too large to begin with (greater than 40-45 degrees). If you have this type of curve, you will probably need surgery. If your doctor recommends surgery, you'll want to think about it seriously and ask many questions.
The goal of the surgery is a usually a solid fusion (solidification) of the curved part of the spine. A fusion is achieved by operating on the spine, adding bone chips and allowing the vertebral bones and bone chips to slowly heal together to form a solid mass of bone called a fusion. The bone chips (bone graft) may come from your hip (iliac crest) or from the hospital's bone bank. Often, the spine is partially straightened with metal rods and hooks or wires (instrumentation). The rods or sometimes a brace or cast hold the spine in place until your fusion has a chance to heal. Once the fusion has healed (usually 3 to 12 months) the abnormal section of the spine cannot curve more. The rods, hooks or wires can usually be left in your back without causing any problems.
Posterior Fusion
Anterior Fusion
Anterior and Posterior Fusion
Further Information about Surgery:
A separate booklet: GETTING READY FOR SPINAL SURGERY is available and describes the surgical experience in more detail.
Glossary of Terms
Anterior Fusion: Fusion performed on the front of the spine, usually by replacing intervertebral discs with bone chips.
Bone Age: An X-ray of the left hand and wrist is compared to the average appearance of the bones at different ages. An estimate of remaining growth is obtained.
Bone Bank Bone: Bone graft obtained from donors.
Bone Graft: Pieces of bone used to create a fusion, obtained from the patient's iliac crest, rib, or from the bone bank.
Boston Brace: A type of spinal orthosis (brace) developed at the Children's Hospital, Boston. The Boston Brace System starts with prefabricated, symmetric spinal orthotic modules of different sizes. Individual braces are customized to fit a particular patient's body shape and spinal curvature. The brace or orthosis is designed according to a 'brace blueprint' drawn from the spinal X-ray. The Boston Bracing System is commonly used throughout the United States and Europe.
Brace: A semi-rigid plastic (and sometimes metal and leather) device which pushes on the muscles and ribs adjacent to the spinal column. The brace (also called an orthosis) is designed to lessen the abnormal spinal curvature while worn.
C-D Rods: Drs. Cotrel and Dubousset designed this popular form of spinal instrumentation, which was the first type of rod system to use multiple hooks on one rod which could be turned in either direction. C-D, TSRH, and other similar systems are popular because they offer more strength of fixation, more points of attachment to the spine and can help preserve or restore normal spinal contours of thoracic kyphosis and lumbar lordosis.
Disc: The intervertebral disc is a strong, rubbery and gelatin - like structure which normally separates the individual vertebral bodies and allows movement between them. Discs are usually removed from the portion of the spine undergoing anterior fusion and replaced with bone chips to create a fusion.
Fusion: A continuous mass of bone which solidifies and immobilizes the desired part of the spine. A fusion is created by adding bone graft to the surfaces of vertebra and then immobilizing that part of the spine with instrumentation or with a cast. A solid fusion cannot bend or curve more as time passes.
Harrington Rod: Designed by Dr. Harrington, the Harrington rod was the first modern means of spinal instrumentation which reliably produced correction and immobilization.
Hook: A hook is that portion of the spinal instrumentation which grasps the vertebra.
Incision: The cut made through the skin for the purposes of operation.
Instrumentation: The metal rods, hooks, screws, etc. which are attached to the spine to change spinal shape and immobilize the spine while fusion occurs.
ISIS, Quantec, or Ortelius: A computerized system used to document the three-dimensional contour of the spine using light beams and a scanning device.
Inclinometer or Scoliometer:: A simple device using a level to measure the 'rib hump'. Useful for detecting and screening for scoliosis.
Kyphosis: Curvature of the spine with the convexity pointing toward the back. It is normal to have some kyphosis in the thoracic (chest area) spinal column. Sometimes there is too much kyphosis in the thoracic spine, called "hyperkyphosis," Scheurmann's kyphosis, or "round back." When there is not enough kyphosis in the thoracic spine (as is usually the case with idiopathic scoliosis), it is called thoracic hypokyphosis.
Lordosis: Curvature of the spine with the convexity toward the front. It is normal to have lordosis in the cervical (neck) and lumbar (waist area) portions of the spine.
Luqué Rods, Wires: Named for Dr. Luqué, these spinal rods use sublaminar wires (wires looped around the back part or each vertebra) for attachment. Luqué type instrumentation is commonly used in paralytic scoliosis such as that seen in cerebral palsy.
Milwaukee Brace: The Milwaukee Brace was the first modern spinal orthosis used for scoliosis, and in its modified form, is still used for Scheurmann's kyphosis and some spinal curves.
Moiré Photograph: Moiré photography uses light projected through a grid and then photographed to record the three-dimensional shape of the back.
Orthosis: A spinal brace.
Posterior Fusion: A fusion performed on the posterior or back surface of the spine.
Rib Hump: The prominence formed by ribs on the convexity of a curve, caused by rotation of the spine and attached ribs.
Risser Sign: The top of the pelvis bone matures in predictable stages referred to as Risser stages. These give some indication of growth remaining in the spine.
Scoliosis: Lateral (sideways) curvature of the spine greater than 15 degrees. (Fifteen degrees or less of sideways curvature in adults is probably normal and should probably not be called scoliosis.)
Skeletal Maturity: When the bones (and spine) are finished growing, skeletal maturity has been reached.
Spinal Column: The spinal column is composed of individual vertebral bones, ligaments, and discs. It surrounds the spinal cord.
Spinal Cord: The spinal cord travels through the spinal column and consists of nerves which carry and receive signals to and from the arms, legs, and many internal organs.
Sublaminar Wires: See Luque' Instrumentation
TLSO (Thoraco-Lumbar-Sacral-Orthosis): A brace or spinal orthosis which does not extend above the shoulders.
TSRH Rods: Similar to C-D rods, named after the Texas Scottish Rite Hospital.
Vertebra: Individual bones which comprise the spinal column.
Vertebral Body: The front portion of the individual vertebra.
Acknowledgements
This guide was prepared by the Children's Hospital Orthopedic Surgical Foundation for use by the Spinal Program.
Outpatient Nursing Advisor: Margaret Gartner, R.N., B.S.N.
Inpatient Nursing Advisor: Mary Beth Giacobbe, R.N., B.S.N., M.S.
Consulting Editor: Judith S. Mitiguy, R.N., M.S.
Medical Advisor: John B. Emans, M.D.
Drawings: Modified from Gail Kass
Photography: James Koepfler
Copyright 1993 - Children's Orthopaedic Surgical Foundation
Updated8/15/2005
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