Scoliosis in teenagers

People with scoliosis rarely feel any symptoms. Some teenagers have back pain or tension around their shoulders. But most people have back pain every now and then anyway, so it's not clear whether that’s due to the scoliosis.

The main sign of scoliosis is visible changes in the upper body. For instance, the back, shoulders, chest or hips may start looking "wonky" or crooked. This is particularly noticeable when the person bends forward. Then one side of their ribs forms a visible hump.

The curve in the spine can vary from person to person. The degree of the curve (the “Cobb angle”) is determined with the help of an x-ray.

In around 80% of teenagers with scoliosis, the spine in the upper back curves to the right (see illustration). Curving in the lower back is less common. Sometimes the spine curves in both the lower and upper back. This also tends to be rare.

It is not clear what causes scoliosis in young people. Adolescent idiopathic scoliosis (AIS) develops between the age of 10 and the time when the spine has stopped growing.

Scoliosis has nothing to do with poor posture. It isn’t anybody’s fault when a young person develops it. And there aren't any known ways to prevent it.

One known risk factor is a family history. In an estimated 10% of teenagers with scoliosis, their mother or father had scoliosis too. Experts also believe that scoliosis is more likely to develop if some parts of the spine grow unusually long or short.

An estimated 2% of people between the ages of 10 and 16 have scoliosis. Most of them only have a slightly curved spine:

• 75% of them have mild scoliosis (a Cobb angle between 10 and 20 degrees),
• 15% have moderate scoliosis (20 to 30 degrees),
• 5% have severe scoliosis (30 to 40 degrees) and
• 5% have very severe scoliosis (over 40 degrees).

Scoliosis is more common in girls than in boys. Girls are also much more likely to have severe scoliosis.

It is not possible to say for sure whether scoliosis will get worse. But doctors can at least give an estimate based on the Cobb angle and how far the person's bones have developed overall (their skeletal maturity). The more severe the curve and the less mature the bones, the more likely it is that the scoliosis will get worse. Once the bones have stopped growing, the curve in the spine won't get worse – unless the scoliosis is very severe, with a Cobb angle of more than 50 degrees.

Doctors can assess skeletal maturity with the help of an x-ray of the back of the pelvic bone (iliac crest). If a lot of bone tissue has already formed on the iliac crest, that means the skeleton has already developed quite far and the bones aren't likely to grow much more. Skeletal maturity is divided into stages known as “Risser stages,” on a scale of 0 to 5. Risser stage 0 means that the bones are still very much in the growth phase. At Risser stage 5, growth is complete.

The following table shows the likelihood of scoliosis getting worse for different angles and stages of skeletal maturity.

Scoliosis cases with a Cobb angle smaller than 10 degrees are considered to reflect normal variation in spine development and don’t need to be treated.

There is hardly any data on the outlook for scoliosis with an angle of more than 30 degrees. One of the reasons for this is that scoliosis of this severity is always treated when it starts to get worse (at the latest). But very severe scoliosis with an angle of more than 50 degrees nearly always gets worse with age if it isn’t treated.

Scoliosis can lead to more "wear and tear" on the vertebrae (spine bones) and the spinal disks. This can cause back pain in adulthood, especially if the scoliosis is in the lower back. But it’s often difficult to say whether back pain is actually caused by scoliosis because back pain is very common anyway. Research on the link between back pain and scoliosis has produced conflicting results.

In severe scoliosis, the curve in the spine can cause the ribs to press down on the heart and lungs. As the person gets older, this can cause breathlessness and stop the heart pumping blood properly. But these types of complications are very rare.

There are no medical reasons why women with scoliosis shouldn't have children. Research has shown that pregnancies in women who have scoliosis are usually no different to those in women who don’t have scoliosis. There is also no evidence to suggest that pregnancy makes scoliosis worse.

The doctor will begin by ruling out other possible causes of the curve in the spine – for instance, having one leg that is longer than the other. They will ask you about

• your current symptoms,
• past medical problems,
• other people in your family who have scoliosis,
• when you first became aware of the curve in your spine and
• how it has developed since then.

The doctor will then do a physical examination to check your posture and structural features of your body. You will need to strip down to your underwear for this so that they can see if anything is "wonky." The doctor will check

• whether your shoulders, chest and waist are in the correct position in relation to each other,
• the shape of your spine,
• whether your legs have different lengths, and
• whether the ribs form a hump on one side when you bend forward (the “forward bend test”).

For the forward bend test, you have to stand with your knees straight and bend forward with your arms dangling and palms together.

More examinations are needed to assess the severity of the scoliosis and the possible outlook:

• An x-ray of the spine while standing: The x-ray image shows how severe the curve is. It is used to work out the Cobb angle. The doctor begins by marking the two vertebrae at the top and bottom ends of the curve on the image. They are the spine bones that tilt sideways the most. Then the doctor draws a line from each of those vertebrae, parallel to the top of the upper vertebra and the bottom of the lower one. The Cobb angle is measured at the point where the two lines meet (see illustration).
• Assessment of growth stage: The doctor or assistant will first measure your height and ask whether you’ve already had a growth spurt. If you’re a girl, they will also want to know whether you've had your first period yet. Based on this information, the doctor can assess how much more the spine is likely to grow. This is because the spine is usually more or less fully developed around two years after a girl’s first period.
• Assessment of skeletal maturity: If the doctor needs more information about your skeletal maturity, your Risser stage can be determined based on an x-ray of the back of your pelvic bone (iliac crest). Alternatively, this can be done based on an x-ray of your left hand instead.

There are various treatment options for scoliosis:

• Active surveillance: This means the spine is checked every four to six months while it’s still growing. It is important to go to these check-ups. If the curve gets worse, treatment is started.
• Physical therapy: Certain types of physical therapy (like the Schroth method) were developed especially for scoliosis. They involve specific stretching, posture, breathing and strengthening exercises. The aim is to straighten the spine. But there are only a few good-quality studies on their effectiveness. Other physical therapy treatments can be used to strengthen the muscles or ease symptoms.
• Back brace (spinal orthosis): By putting pressure on certain parts of the spine, orthopedic braces stop the curve getting worse. They are worn until the spine stops growing.
• Surgery: This involves using small rods, wires, hooks and/or screws to straighten the tilted vertebrae. Surgery is only considered if the scoliosis is very severe. This is because very severe scoliosis usually continues to get worse even after the person’s bones have stopped growing.

The right treatment option for you will depend on how curved your spine is and your skeletal maturity – but also on what you would prefer.

Sports and exercise can't stop scoliosis from progressing but they are a helpful part of an overall treatment approach. They can improve your general wellbeing and fitness, strengthen your back muscles and help to prevent back pain. Strengthening the back muscles is particularly important if you wear a back brace.

There is no proof that other treatments, such as electrical stimulation or chiropractic treatment, have any effect on scoliosis.

Scoliosis treatment is often given in an outpatient setting (without an overnight stay). But if you’re in great pain, the outpatient treatment isn’t enough or the scoliosis is greatly affecting your quality of life, inpatient rehabilitation treatment is an option. In Germany, various specialized rehabilitation centers offer inpatient scoliosis treatment lasting roughly between three and six weeks. The treatment may include things like physical therapy, patient education classes (to learn how to use a back brace, for example) and counseling support to help reduce emotional stress caused by scoliosis.

Being diagnosed with scoliosis often leads to a number of worries in teenagers. They are in a phase of life where they just want to belong and not be different. On top of that, the treatment (wearing a brace, for instance) often takes a long time and raises a lot of questions: Will I cope with the brace? What clothes can I wear now? How will other people react?

The good news is that the restrictions caused by scoliosis usually have much less of an impact on friendships, hobbies and leisure activities than you might first think.

It is mainly the adjustments in everyday life that need time and patience. For instance, it often takes a good few weeks to get used to wearing the brace. It can also take time for physical therapy exercises to become a normal part of your daily life.

Although scoliosis poses a number of challenges, it’s important to know that there is effective treatment and it will end in the foreseeable future. When things are difficult, it’s often helpful to think about the positive things in your life and stay optimistic: Most teenagers who have scoliosis will be able to lead a completely normal life.

Talking to other teenagers with scoliosis can help too – for example, through a support group near you or online.

If you’re a parent, it’s important that you take your child’s worries seriously and involve them in any decisions about the treatment. They can usually cope better if they understand and know what scoliosis is, what the treatment is for, and what to expect. You can also encourage your child to ask the doctor questions themselves. If they do that, it’s a good idea to make a note of the questions beforehand so nothing is forgotten.

When people are ill or need medical advice, they usually go to see their family doctor first. Information about health care in Germany can help you to navigate the German health care system and find a suitable doctor. You can use this list of questions to prepare for your appointment.

There are many places in Germany where teenagers with scoliosis can get support. They include support groups and information centers. This list may help you find the support you’re looking for.