What is idiopathic scoliosis?

Adolescent idiopathic scoliosis (AIS) is a change in the shape of the spine during the child’s growth. The word ‘idiopathic’ means that the cause of the condition is unknown.

Adolescent idiopathic scoliosis normally starts in children over the age of 10 and results in the spine curving sideways and often twisting at the same time. This twisting can pull the child’s ribcage out of position, sometimes leading to a hump on one side of the ribs.

How will my child’s adolescent idiopathic scoliosis be diagnosed?

The most common time for scoliosis to develop is between the ages of 10 – 15 years old. Parents or carers are often the first to notice that their child may have adolescent idiopathic scoliosis. Many adolescents with this condition are otherwise healthy and able to live comfortably with a small curvature in their spine. Other adolescents may need treatment to manage the condition.

What signs of adolescent idiopathic scoliosis should I look out for?

• The child’s rib cage may stick out on one side, especially at the back
• The child may have uneven shoulders, or one shoulder blade may stick out more than the other
• The child’s hip/waist may stick out
• As the child becomes old enough to walk, they may lean to one side
• As the child becomes old enough to walk, they may lean to one side
• The child’s head may tilt over to the side
• The child’s clothing may not fit as well as they used to
• The child may not be able to stand up straight
• The child may be in regular physical pain or discomfort

How do I check for signs of scoliosis in my adolescent child?

One of the best ways to check for signs of scoliosis in older children is to take the ‘Adam’s Forward Bend’ test. This test can be undertaken with a doctor or parent/guardian present and, although this is not a formal diagnosis, the findings can put you on the right path to receiving specialist support.

Adam’s Forward Bend Test

• The child’s back will need to be uncovered so that their shoulders and spine are visible.
• The child should bend forward from the waist whilst keeping their legs and arms straight.
• If scoliosis is present, you may be able to see a bulge in the ribs area on their back.
• If a curve is noticed your GP will give a referral to see a scoliosis specialist.

What will happen when we meet a scoliosis specialist?

Your doctor will organise a consultation with a scoliosis specialist. At the first consultation it is likely that the child will be examined by X-ray to help measure the size of the curve. You will then be informed of the Cobb angle, which is the name given to the exact degree of the curve.

These X-rays will also show the spine from top to bottom, including some areas of the shoulders and hips allowing the specialist to distinguish if there are further issues in spine that need investigating, such as extra, missing, or fused vertebrae.

CT scans or MRI can also be undertaken and will show more detailed pictures of the spine.

What treatment will my child receive?

Your scoliosis specialist will advise about the best treatment for your child. This advice will depend on the type of scoliosis your child has, the size of the curve in their spine, and how fast it is growing.

Monitoring
A specialist may recommend monitoring any changes to your child’s spinal curve over a period of time. Your child’s curve will likely be assessed every 6-12 months. If your child is growing quickly they may need to be assessed or consulted more often. If the curve becomes larger the specialist might suggest further treatment, such as bracing or surgery.

Bracing
Bracing aims to slow down the growth of a curve. There are several different kinds of braces for young children and teenagers and they are usually made of a lightweight plastic, your child will be able to choose the colour and design. The brace is fitted to the shape of the body and it has padding and straps to hold it in place and are made by a skilled brace maker called an orthotist. The orthotist will also fit the brace and you may need to visit the orthotist more than once to make sure the brace fits comfortably. Braces are usually worn for at least 18 hours a day and should only be removed for washing.

Not all scoliosis specialists offer bracing as a treatment, because bracing does not always stop the patient from needing surgery later on, and some curves are not suitable for bracing. Your specialist will be able to inform you of this.

Surgery
Sometimes a curve continues to grow quickly reaching a large size which may mean that non-surgical treatments are unlikely to work. In this case, a specialist may recommend surgery, often called ‘fusion surgery’, to correct the curve.

Choosing whether surgery is the right option is a big decision and is only taken on an individual basis after discussion between the parents, the scoliosis specialist, and most importantly, the adolescent with the condition. Teenagers, in particular, need to be involved in decisions surrounding surgery so that they feel in control of their treatment, this can also help to reduce worry and anxiety.

Being advised that surgery might be needed can come as a shock, it can be difficult to think clearly when you are in the consultation room with the specialist and sometimes unanswered questions come to mind, after the consultation. The best thing to do is to write these questions down so you can discuss these with the specialist at your next consultation. Families can also call our helpline on 020 8964 1166 as it can sometimes help to talk things through.

Patients and their families should have the procedures, both before and after surgery, explained to them carefully by their specialists. Being prepared for what will happen can greatly reduce anxiety and stress

How will adolescent idiopathic scoliosis affect my child?

Techniques for the treatment of adolescent idiopathic scoliosis have advanced a lot in recent years. How well a treatment works for each patient depends mainly on the size and nature of the curve. Sometimes when a curve is very large and stiff the main aim of surgery is to stop the curve from getting bigger. Therefore, changes to body shape might not be significantly different, for smaller and more flexible curves, the difference might be more noticeable. However, most patients are generally pleased with the outcome of surgery.

If you need help or advice please call our Helpline on 020 8964 1166 or e-mail: info@ssr.org.uk.