Spina bifida and associated pain

Many people with spina bifida will experience pain at some time. There are many different things that can cause the sensation of pain in the body. Some of them are minor and some are more serious. If your child is experiencing pain, it is important to talk to their doctor so they can help you manage or treat it.

Back pain

Back pain is quite common in spina bifida. It can come from the muscles, bones, joints and spinal cord, at sometimes your kidneys, bladder or bowel. Your doctor or physiotherapist will help you work out what is most likely causing your back pain.

Muscles, bones and joints

When you have spina bifida, the bones, muscles and joints around the area of your spina bifida may not have fully formed. This means that you could be more likely to get injuries around the area leading to pain. Sometimes the walking patterns people with spina bifida use, will put extra strain on the back and spine leading to pain and discomfort. When muscles and joints are affected, your physiotherapist can give you some exercises to help strengthen the muscles to protect your back.

Spinal cord

Pain in your back can be coming from the spinal cord, in particular tethering of the spinal cord. If the cord is stuck down and not moving freely, it can lead to pain in the back and/or legs. Your doctors and physio will ask you specific questions about your back pain to try to work out whether it is caused by a tethered cord. They will also look at your muscle strength, sensation, and reflexes to look for signs of cord tethering. Your doctor might recommend an MRI scan of your back to see if there are any changes related to cord tethering. Very rarely, people with spina bifida need surgery to release the tethered cord to manage the back pain.

Kidneys, bladder or bowel

Infections in your bladder or kidneys (urinary tract infections) can cause back pain. Constipation might also give you some back pain. It is important to mention this pain to your doctors so they can help you work out what is causing the pain and what other tests might be needed.

Headaches

Headaches are common and most people have them at some point in their lives. For people with spina bifida and hydrocephalus, very rarely a bad headache or more frequent headaches might be a sign of problems with your shunt. Your doctor will help you to work out whether headaches are likely related to your shunt or another cause. If your headaches are severe, affecting your vision, causing you to feel sick or vomit or making you sleepy, it is important to talk to your doctor quickly. If the symptoms persist or become worse, you should present to your hospital emergency for review.

Shunt problems can be life threatening. It is important to know the signs of shunt malfunction and where to go for help. These include:

• Headache
• Vomiting and nausea
• Sleepiness or difficulty waking
• Confusion, difficulty concentrating or change in school performance
• Irritability
• Vision difficulties
• Seizures
• Loss of coordination

Knee pain

Knee pain is a common complaint for people with spina bifida especially if you walk or have been a walker when you were younger. Some of the patterns of walking that people with spina bifida use because of the weakness in the lower limb muscles can increase your risk of getting knee pain. Your orthopaedic surgeon or physiotherapist might recommend orthotics or crutches to reduce the chances of you developing knee pain. Talk to your doctor or physiotherapist about knee pain.

Shoulder pain

If you use a wheelchair or walking aid to get around, you might get pain in your wrists, shoulders or neck. This pain can make wheeling, transferring and bottom lifts more difficult. It is important to talk with your physiotherapist about this pain as there may be some exercises that they can give you to make sure your muscles are as strong as they can be for wheeling. The physiotherapist might also need to look at your wheelchair set up, your transfers and how you propel the chair to see changing these can help your pain.

Keeping a diary

When you feel pain, your care team will ask you lots of questions about it. Where the pain is, when it comes on, what you were doing when the pain started? etc.  Some people find it helpful to start a diary and write down their symptoms. You can fill out the table below and bring it with you your next appointment.

Pain symptom diary

Developed by the Queensland Paediatric Rehabilitation Service, Queensland Children’s Hospital. We acknowledge the input of consumers and carers. Resource ID: FS374 Reviewed: August 2023.

Disclaimer: This information has been produced by healthcare professionals as a guideline only and is intended to support, not replace, discussion with your child’s doctor or healthcare professionals. Information is updated regularly, so please check you are referring to the most recent version. Seek medical advice, as appropriate, for concerns regarding your child’s health.