Scoliosis in muscle wasting conditions

Kyphosis is also common. This is where the spine curves forwards making the upper back look more rounded.

Scoliosis can start at any age but is most common in children, when the spine is growing. It can affect your or your child’s body shape (posture) when you’re sitting or lying down. It can also affect standing and walking.

The symptoms of scoliosis vary between muscle wasting conditions and even between people with the same condition.

Scoliosis can worsen over time, but management can help to prevent pain and other complications.

You may find it helpful to read this page together with our page on looking after your posture.

Muscle wasting conditions can cause weakening of the muscles around the spine and centre of the body. This can lead to a curve in the spine. The curve usually affects the whole spine, making an S or C shape.

Scoliosis affects everyone differently, but it can cause complications, such as:

• Problems doing daily activities – for example, you or your child may need help with personal care
• Difficulty sitting or standing – you or your child may need equipment to support you when you’re sitting down or standing up
• Back pain
• Areas of damaged skin and tissue (pressure ulcers)
• Breathing problems
• Heart problems

Speak to your GP, neuromuscular team, or physiotherapist if you notice any changes to your, or your child’s, body shape. If you have scoliosis, they may refer you to a spinal team for further assessment. You may have a spinal X-ray to look at the curve in more detail.

A team of health professionals will work with you to agree how to manage your or your child’s scoliosis. This team may include:

• Doctors – for example, those who specialise in treating children, nerve and muscle problems, and spinal problems
• A physiotherapist – a health professional who helps manage symptoms through movement, exercise, and manual therapy
• An occupational therapist – a health professional who can help you live as fully and independently as possible
• Wheelchair services
• A psychologist – a health professional who can offer emotional support to you or your child
• A nurse – who can give you further support and information

Non-surgical or non-operative conservative management can include observation, seating, bracing, and physiotherapy.

Not all options are suitable for everyone. Your healthcare team will explain which options may benefit you or your child.

Observation

Your doctor or physiotherapist will monitor the curve in the spine. If it stays the same, they will carry on observing it every six to twelve months, especially during growth. If the curve is worsening or causing complications, they will talk to you about other management options.

Seating

Your healthcare team can give you seating to help your posture. This can help you sit in a more balanced and comfortable position.

If you or your child use a wheelchair, you can use supports, inserts, and straps to sit in a more symmetrical position. For children who are still growing, this equipment will need to change as their spine grows and changes shape.

Bracing

Wearing a spinal brace around your torso can improve position and posture. The brace is sometimes called a thoraco-lumbar-sacral-orthosis (TLSO).

An orthotist will make a brace for your or your child’s curve. The spinal team will tell you how long to wear the brace each day. Usually, it’s worn during the day, especially when you feel most tired.

Your healthcare team can tell you whether they’re a good option for you or your child.

Physiotherapy

Although it’s difficult to prevent curving of the spine, symmetrical exercises are important for preventing an uneven posture (where one side of the body does not match the other). Symmetrical exercises help avoid strengthening one side of the spine more than the other. Swimming is a great example, as it encourages balanced movement and helps keep the spine mobile and flexible.

Surgery aims to improve posture and help you or your child sit or stand in a balanced and comfortable position.

Your healthcare team may recommend surgery if:

• The curve in your spine is severe or progressing quickly
• Your sitting or standing position is becoming less balanced and causing discomfort

Pre-operative assessment

Your healthcare team will assess you or your child to see whether surgery is a safe and suitable option.

They will talk to you about how surgery can help and what the possible risks are.

You or your child will have some tests, which may include:

• An X-ray of your chest and spine
• An MRI scan
• Blood tests
• A test to measure oxygen levels in the blood
• Lung function tests, such as spirometry or a sleep study – read more about these on our breathing page
• Heart function tests, such as an ECG or echocardiogram – read more about how muscle weakness affects the heart

A doctor (anaesthetist) will make sure you or your child are able to have a general anaesthetic for the operation. It’s important that your anaesthetist knows about your or your child’s muscle wasting condition. You can read more about this on our anaesthetics and muscle wasting conditions page.

Type of surgery

The type of surgery you or your child has will depend on:

• Your or your child’s age
• How severe the curve is

Possible options include using growing rods and spinal fusion.

Traditional growing rods are usually used for children aged under 10 years. They help stop the spine curving while a child is growing.

The surgeon attaches the rods to the bones in the spine using screws. They will lengthen the rods often until the child is ready for a spinal fusion. The surgery and lengthening are done under a general anaesthetic.

Spinal fusion involves permanently attaching two rods to the spine using screws to hold it in position. Over time, the bones will fuse together.

This helps to straighten the spine and stop the curve worsening. It can also make the spine stiffer than before. Spinal fusion may be suitable for older children and adults.

After surgery

After the operation, you or your child will move to a ward. This could be an intensive care, high dependency, or orthopaedic ward.

You will have pain relief, which may include a pump you control yourself (patient controlled analgesia).

Your healthcare team will help with your recovery in hospital. The team will include a physiotherapist and an occupational therapist.

Before you can go home, you will need to be eating and drinking and have passed urine and poo. An average time spent in hospital is seven nights.

Once you’re home, you will have follow-up appointments as an outpatient. Your healthcare team can give you advice about returning to activities and exercise. Your child should be well enough to return to school four to six weeks after the operation.

Possible complications

Your surgeon will talk to you about the benefits and risks of surgery. The chances of having complications varies depending on your muscle condition and how curved your spine is.

Possible complications include:

• Wound infection
• Failure to reduce the pain
• Rods breaking or not working
• Blood loss
• Breathing problems
• Skin problems caused by the rods
• Damage to the spinal cord

The healthcare team will monitor you during and after surgery to help prevent or treat any complications.