Adolescent idiopathic scoliosis

Adolescent idiopathic scoliosis is a change in the shape of the spine during the child’s growth. It results in the spine curving sideways and twisting at the same time. This twisting can pull the ribcage out of position, often leading to a hump on one side of the ribs. When this happens between ages 10 and 18 it is called adolescent idiopathic scoliosis (AIS).

The word idiopathic means there is no known cause. Research continues into the causes of scoliosis but it does seem to run in families. It is not caused by anything the child or parent did or did not do. AIS affects both girls and boys but is much more common in girls.

The important thing is to make sure that your GP arranges a referral to a specialist unit (within an NHS hospital) that treats scoliosis early on. Diagnosing scoliosis early on can sometimes make treatment more straight-forward.

Diagnosis

The most common time for scoliosis to develop is during adolescence. At this time scoliosis can be difficult to spot as teenagers are often covered up and their parents do not usually see them undressed.

A quick forward bend test (see image below) can help to check whether a child has scoliosis. The test is very easy to do and can be done by a doctor or parent/guardian. The child will need to uncover their back so that their shoulders and spine can be clearly seen. Ask the child to bend forward from the waist and to keep their legs and arms straight. You will need to look at the child from behind. If the child has scoliosis you should be able to see a clear bulge on one side of the back where the ribs are.

As well as the forward bend test, there are some other common signs of scoliosis to look out for. Sometimes one shoulder blade will stick out more than the other, a child might lean a little to one side, or one hip might be higher than the other. The forward bend test is only an aid to check for scoliosis and only a medical professional can make a diagnosis.

The earlier scoliosis is diagnosed and treated the better. If you think that you or your child might have a curvature you should visit your doctor who can check and may be able to give you a diagnosis. If your doctor confirms that you have scoliosis, you will need to see a scoliosis specialist. You should ask your doctor to arrange the referral to a specialist centre as soon as possible.

What happens next?

Your doctor will be able to refer you or your child to the care of a scoliosis specialist. Sometimes your doctor might not have the most up-to-date list of these specialists. If not, you can contact SAUK. We will let you know where your nearest NHS/private scoliosis specialist centre is and the names of the specialists.

After scoliosis has been spotted, the doctor will refer the patient to a scoliosis specialist. The specialist will need to examine the patient. They will also take X-rays.

These X-rays should show the child’s spine from top to bottom and include some parts of the shoulders and hips. The X-rays allow the specialist to see if the spine has any other problems such as extra/missing/fused vertebrae (small bones that make up the spine) or if the spine has developed a curve for no known reason.

CT and MRI scans are sometimes done to show more detailed pictures of the spine and check that there are no problems with the spinal cord.

Treatment

Monitoring

The specialist may recommend waiting and keeping an eye on the curvature. A specialist normally checks on the child’s curve every 6-12 months. If your child is growing quickly they might need to be checked more often. The specialist will check to make sure the curve does not increase. If the curve is getting bigger the specialist might suggest further treatment:

Bracing

The idea is that bracing will slow down the growth of a curve. There are several different kinds of braces for young children and teenagers. Each type is usually made of 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.

A skilled brace maker called an orthotist will fit the brace. You might 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. They should be removed only for washing.

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

For more information on bracing please click here.

Surgery

Sometimes a curve continues to grow quickly. It might reach a large size, which may mean that non-surgical treatments are unlikely to work. In this case, a specialist may recommend surgery to correct the curve. This surgery is sometimes called fusion surgery. Every scoliosis is different, and every operation is different. Your specialist will talk to you about what the advice is for your child’s spine.

Choosing whether surgery is the right option is a big decision. The decision is always taken on an individual basis after discussion between the parents, the scoliosis specialist, and most importantly, the patient.

Teenagers in particular need to be involved in such a major decision so that they feel in control of their treatment, which can help to reduce worry and anxiety.

The advice that surgery might be needed can come as a shock for the child and the family. This can make it difficult to think clearly when you are in the consultation room with the specialist. Sometimes unanswered questions come to mind after the consultation. The best thing to do is to write down these questions, which will help you to remember to discuss them the next time you see the specialist.

Families can also call SAUK as it can sometimes help to talk things through. We can direct you to information and resources that may help. You may find it useful to talk to members who have gone through surgery and discuss their experiences.

Patients and their families should have as full an understanding as possible of what is involved, both before and after surgery. Being prepared for what will happen can greatly reduce anxiety and stress

For further information on AIS surgery, click here to visit the AIS surgery section of our website

Prognosis (outcome)

Techniques for the treatment of AIS 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 the changes to body shape might not be as much as expected. For smaller and more flexible curves the difference might be more noticeable. Most patients are generally pleased with the outcome of surgery.

Frequently asked questions

Here is a selection of common questions we are asked by callers on our Helpline. If there is other information needed or for further advice please do not hesitate to call us on: 020 8964 1166 or e-mail: info@sauk.org.uk

Scoliosis is a sideways curvature of the spine. The most common type of scoliosis is adolescent idiopathic scoliosis (AIS). Idiopathic means the cause is not known. However, there are ways of telling if the curve is likely to progress (get bigger).

Unfortunately this is a really difficult question to answer. In most cases the cause of scoliosis is idiopathic, which means that there is no known cause. In some cases it does seem to run in families. Around a quarter of people with scoliosis have a close relative with a curvature of the spine. 

If you or any of your children are diagnosed with scoliosis it is important that you see a scoliosis specialist. There are around 30 scoliosis centres of excellence across the UK and you can find your nearest specialist by calling or emailing SAUK. You will need to take the names of the specialists to your GP, who will arrange a referral. You will then receive a letter in the post with your appointment date and time.

At your first consultation you will be examined by the specialist, X-rays will be taken, and you will be told the Cobb angle. The Cobb angle is measured in degrees and will tell you how big the curve is.

The specialist will then talk to you about your scoliosis and possible treatments. For smaller curves the specialist will probably want to start by checking you regularly to see if the curve is getting bigger. For larger curves treatment will probably be recommended. It is important to remember that every scoliosis is different and there is no standard treatment, so getting the advice of a specialist is very important.

In general, AIS should not stop patients from taking part in physical activities. Patients who have mild scoliosis and are being monitored by a specialist can usually carry on as normal.

Patients may be monitored to start with to see if the scoliosis is progressing (getting worse) and at what rate. This monitoring usually means being checked regularly by a specialist. X-rays will be taken to see if the curve is getting bigger. Some patients will not need further treatment but for patients who have a large curve surgery may be recommended. For information on AIS surgery click here

Scoliosis can only be prevented when it is due to rickets or poliomyelitis, which can both be treated. Happily both these diseases are now very rare. 

Scoliosis is not caused by bad posture, carrying a heavy backpack, or anything the child or parents did or did not do.

It is very common for a parent not to notice a curvature straightaway. Scoliosis most often appears during adolescence, when the body is developing and changing. Young people are more likely to undress privately and it’s often on holiday or when they are wearing something tight that the curvature is noticed. Scoliosis can progress very quickly, so a curve can seem to appear suddenly that might not have been easy to spot just a few months earlier.

As a parent the most important things to focus on are:

  • that the curvature has been spotted
  • that your child is getting the right specialist supervision
  • giving your child lots of support

Having scoliosis does not stop most young people doing what they always do. If they are not in pain and are under specialist care they can go on as they always have. Exercising and taking part in sports is a good idea and helps to keep you healthy and flexible. However, it is a good idea to check this with the specialist. It is particularly important to check in the case of sports like rugby or horse riding.

Wearing a brace shouldn’t stop a child from being active. If surgery is needed, patients should slowly ease back into gentle exercise. Many patients will be back to normal activity levels by around 6 months. For high impact exercise and contact sports it will take longer.

Please do note that every case is different, so ensure that you consult your scoliosis specialist.

It is normal to feel confused about what course of treatment to choose for you or your child. There is a lot of information to take in and some of the questions about scoliosis have no clear answer. It is absolutely fine to ask your specialist further questions, and perhaps another appointment to go through everything again. It is usually helpful to have list of questions for the specialist so that you get all the information you want. If need be you could ask for a second opinion.

If you need names of other centres or specialists then you can get this information from us by calling or emailing the SAUK Helpline. You may also find that it helps to talk through the specialist’s advice with someone. The friendly SAUK team are always happy to offer advice, support, and a listening ear. You can ask us as many questions as you like and we will try to help. It sometimes helps to speak to people who have been in a similar position. If you would like to speak to people affected by scoliosis, the SAUK membership scheme can help you to do so.

Many of our members have happy, healthy families. It is always sensible to discuss the management of labour in advance with the medical staff who will take care of you during the birth. Your scoliosis may affect the position you take during labour and delivery. Sometimes if you have had a spinal fusion operation you will not be able to have an epidural.

Although idiopathic scoliosis sometimes runs in families, the risk of the baby developing scoliosis is low.

Everyone reacts differently to being diagnosed with and living with scoliosis but it can be a lonely and worrying time for a teenager. Young people often dislike anything that makes them different from their friends and may worry about what scoliosis will mean for their future.

It is important for teenagers to be involved in discussions about their health and given the chance to ask questions of the specialist if they wish to do so. It is a good idea to get them to write down any questions or concerns before the appointment.

Try to discourage them from surfing the internet for information about scoliosis and let them know that what they read online will often not be accurate. It is helpful to provide them with information from trusted sources as learning more about scoliosis can help to reassure them.

Speaking with other teenagers who also have scoliosis can help them to feel less alone. Our membership scheme allows us to put families in touch with each other who have been through similar experiences so teenagers can contact each other or meet up. 

If your teenager has been put on the waiting list for surgery this can be a very difficult and often upsetting time for the whole family. Being prepared can really help to reduce anxiety and distress so we have put together some guidelines to help with preparing your child for surgery.

Encouraging a young person to wear a brace can be really hard. There will be times when it feels hot and uncomfortable. Brace-wearers often feel self-conscious and different from their school friends. At SAUK we believe that young people find it helpful to speak to others who have been through a similar experience. If you are a member we can give you contact details of other young people with scoliosis in your area. If your child feels comfortable you could ask your child’s school to have a talk or assembly about scoliosis will raise awareness of the condition, and increase understanding at school. We can provide leaflets to the school and talk to them about how to best support a child with scoliosis.

Every person is very different when it comes to recovery. For young people, a usual hospital stay is about a week after the operation, but this time can vary depending on how extensive the operation is.

Once at home, most patients would be able to do basic things for themselves and be able to go up and downstairs but might need some help. They can slowly build up their activity levels as they recover.

The general guideline for going back to school is around 6 weeks but some people feel well enough to return sooner. Many patients will be back to doing their normal activities by around 6 months after the operation. For some activities such as football and other contact sports it will be longer ̶ usually around 9 months to a year after the operation.

It is your right to ask for a second opinion from another specialist at the same or a different hospital.

Also every hospital has a patient advice and liaison service (PALS). If you are unhappy with the way that you have been treated or have any other worry or concern about your care, you can seek advice from the PALS service linked to your hospital, which will be happy to help.

For patients in Scotland you can contact the Patient Advice and Support Service http://www.patientadvicescotland.org.uk/

Patients in Northern Ireland can contact http://www.patientclientcouncil.hscni.net/

If you would like to talk further about any aspect of scoliosis, SAUK is here to help; please call our helpline or contact us via post or using our e-mail address info@sauk.org.uk.