Navigating Treatment on the NHS

An article by Spinal Surgeon Tom Marjoram & the team at Norfolk & Norwich University Hospitals

Navigating a scoliosis diagnosis can be overwhelming, but the right guidance makes all the difference. Our latest expert-led resource breaks down the scoliosis care journey for children, adolescents, and adults. From initial GP appointments and diagnostic scans to physiotherapy, bracing, surgery, and long-term pain management, this guide provides essential insights to help patients and families make informed decisions. Whether you’re seeking treatment options or looking for recovery tips, this article is a must-read for anyone affected by scoliosis.

Adult Pathway

Diagnosis

Diagnosing adult-onset scoliosis can be difficult. Most people will initially present to their GP or to a community MSK (musculoskeletal) service. After listening to your concerns, the healthcare professional will usually want to examine you. This will include an inspection of the back and may also involve a wider examination of the arms and legs. This broader examination aims to look for potentially linked conditions and to assess for any nerve issues related to the problem.

Depending on the regional pathway of the area where you live, the GP might be able to access some further imaging. In some regions, these are limited to specialists to help minimise the need for potentially unnecessary repeated investigations.

X-ray

A common starting investigation is a standing x-ray of the spine, usually taken with the elbows bent and touching your shoulders. Ideally, these should be taken without any support for the body (if possible) to ensure they are as true a representation as possible. In adult scoliosis, x-rays taken from the side are particularly important, as it is the imbalance in this direction (tilting too far forwards or backwards) that can have the biggest impact on you. Sometimes, the x-ray will need to include the legs to explore the methods you may use (unconsciously) to compensate for your scoliosis.

MRI

An MRI uses a powerful magnet to produce 3D images of the spine. It provides detailed images of the nerves, discs, and other structures. Having the pictures taken while lying down also allows the surgeon to assess how your spine changes when no weight is placed on it.

To have an MRI, you will be asked a series of screening questions for safety, which is normal and essential to ensure the safe planning and performance of the scan.
Be prepared to remove any metal objects, such as piercings, and you may be asked to change into a hospital gown if necessary.

The scan itself involves lying on a flat surface that moves in and out of the doughnut-shaped scanner. The scanner can be noisy, but headphones are usually provided to help minimise the impact of this. Throughout the scan, the radiographers will be monitoring you and will communicate with you. If you have any issues, you will be given a button to press to pause/stop or to request assistance.

CT Scan

A CT scan is similar to an MRI in that you will be asked to lie on a flat surface that moves in and out of the scanner. However, a CT does not rely on magnets, so the safety questions will differ. A CT scan is excellent for examining the structure of the bones themselves (rather than the bones, discs, and other tissues seen in an MRI). It still produces high-quality 3D images that allow the team to have a comprehensive understanding of the anatomy of your spine to plan ongoing management.

Bone Density Scanning

Bone density scanning, commonly referred to as a DEXA scan, is one method used to assess bone density. Emerging methods are also being explored for this purpose. The scan involves taking specialized x-rays of different bones, usually the spine and hip, to measure their density. This measurement is then compared to known average values to determine whether your bones are of appropriate density. The reason for measuring bone density is to evaluate the quality of your bones, as this can impact the strength of fixation points, such as screws used in surgery.

Physiotherapy

At any point in your pathway, you may be referred to physiotherapy. Seeing a specialist physiotherapist offers many benefits. Regular movement and weight-bearing exercises positively affect bone quality and density. Having strong core muscles and flexible joints (especially in the hips) can help your body compensate for scoliosis and support the spine. With persistence, some people notice significant improvements in both pain and function as their muscles become better conditioned.

The exact physiotherapy approach will vary from person to person, depending on your abilities and pain levels. It usually focuses on increasing mobility and conditioning the core muscles (back and abdomen) to support the spine while staying active. Physiotherapy may sometimes include hydrotherapy (swimming pool exercises), but this will be explained to you by your therapist.

It is important to understand that physiotherapy is something you actively do, not something done to you. The aim of the therapist is to guide and teach you through recommended stretches and exercises, but they cannot do them for you. Keep in mind that it takes time for physiotherapy to show positive results, and if you stop doing the exercises, the benefits will diminish.

The Surgical Team

An appointment with a spine surgeon may not always be necessary. However, if you do meet with the surgical team, it will be to discuss your symptoms and the impact they have on your daily life. If additional imaging is required, the surgical team will arrange these tests to help guide their decision-making.

Decisions regarding surgery can be complex, depending on the severity of your condition and the results of any investigations. There may be several treatment options, ranging from simpler interventions such as injections to more major surgeries. However, surgery is not always the best option, and sometimes other treatments, like physiotherapy, may be more appropriate. Each management decision will carefully consider both the risks (which can be significant) and the benefits (which are not always clear and never guaranteed). If surgery is not recommended, it does not mean the healthcare system has given up on you. In fact, ruling out surgery can sometimes open up other treatment options!

Pain Management

Many people with adult scoliosis will eventually work with the pain management team at some point during their journey.

The role of the pain management team is to manage the pain you are experiencing. While they may provide interventions to reduce pain, they also focus on teaching coping strategies to minimize the impact of pain on your daily life. Their approach differs from that of the surgical team, which focuses more on the physical aspects of your condition. The pain management team often uses a broader strategy, incorporating various modalities, including psychological aspects of pain and, in some cases, group sessions.

It’s important to approach pain management with an open mind to fully engage with the service and get the most benefit. Pain management often works well alongside physiotherapy, helping to manage pain while improving function.

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

Child and Adolescent Pathway

GP Diagnosis

Often, the first healthcare professional you will see will be your general practitioner (or another member of the practice). Some people who have contact with other healthcare teams may see a specialist physiotherapist or another member of the healthcare team.

The person you initially see will usually listen to any concerns you have about your (or your child’s) back and ask you some initial questions, perhaps including when you first noticed the issue and how it affects you.

You should be prepared for an examination of your back, as well as your tummy, arms, and legs. Doctors will often take note of any differences in the shape of the body on one side compared to the other or a difference in the height of the shoulders.

The most common examination test involves simply asking you to bend forwards, allowing the healthcare team to get a line of sight down the spine, which highlights any rotation of the spine. The rotation causes one side of the spine to move forwards and the other to move back, making one side appear more prominent when looking down the spine in the bent-forward position. This is often called the Adams’ forward bend test (after the person who first described it).

If the person assessing you suspects you may have scoliosis, you will most likely be referred to someone more specialised in the assessment and management of scoliosis.

Smaller Spinal Curves

May be referred to Physio

Physiotherapy can be key to the management of scoliosis. The spine receives much of its support from the muscles that surround it. Having strong, well-conditioned muscles can really help you. In many cases, the discomfort felt by patients is due to the uneven pull on the ligaments and the uneven work of the muscles that control and support the back.

It is also important to consider that the muscles of the arms and legs can become tight as your bones grow. The muscles can often take a little time to catch up with this growth. In the meantime, they can become tight and restrict normal movement, which can put more strain on the spine. Some simple stretches performed regularly can help improve this tightness faster, allowing the body to move more freely.

The physiotherapist will assess you and your back to identify any tight muscles and any weak muscles. Some people may be given specific exercises to target certain muscle groups. You will also receive advice regarding general back care and the importance of doing some form of exercise/activity that you enjoy on a regular basis.

It is important to know that physiotherapy and exercises cannot ‘correct’ structural curves, but in very minor curves, they may be able to slow or limit progression.

May have an X-ray or MRI

An X-ray is performed while you are standing so that we can appreciate the shape of the spine when you are in an upright position. It will be explained to you how to stand exactly (and there can be some slight variation in this), but the image below gives an idea.

When having an X-ray (if you are female), you should be prepared to answer a question about pregnancy – this is not a judgement but an important safety question.

(From: Spine Deformity Study Group Radiographic Measurement Manual, 2008)

An MRI

An MRI is a magnetic scanner that gives the team a 3D image of the spine and its nerves. This is not essential for providing you with a diagnosis, but it can sometimes offer the team some really useful information to plan ongoing care.

Because it involves a large magnet, there are several safety questions you should expect to be asked – this is entirely normal. If you have any piercings, you’ll need to remove them to have an MRI.

The MRI scanner itself can be noisy, and often you’ll be given headphones to help with this.

You’ll always be closely monitored during the scan, and there is always a mechanism (often a button to press) if you feel as though you cannot carry on.

You may be referred to the Scoliosis Team and have ongoing monitoring

Some healthcare teams can make a decision without the involvement of the spine surgery team for smaller curves. This might involve ongoing assessment to check that the curve does not progress or get larger.

Often, once a diagnosis of scoliosis is suspected, you’ll be referred to the scoliosis clinic. This usually consists of a variety of people, including a spine surgeon, specialist physiotherapists, and specialist nurses (each clinic can be different).

If the curve is smaller, the initial decision may be to simply keep a watch on the curve. You’ll usually be seen again at an appropriate time interval to see how the curve changes over time.

You may be seen by an Orthotist for a Brace and Monitored (this includes what a brace is, how it is worn, the reason for wearing a brace, etc.)

An orthotist is a specialist who can measure and create equipment to support the body – this can include a brace for scoliosis.

What is a brace? – A brace is a tight-fitting, hard plastic jacket (with padding) that aims to slow the progression of a scoliosis curve by applying pressure to the body to affect the spine. You should not expect a brace to improve the shape of your scoliosis – only to slow its progression.

Different braces are advised to be worn for different numbers of hours throughout the day. Your team will explain this fully to you. Often, the recommendation will be to wear the brace both day and night to get the maximum effect.

It should, however, be taken off for exercise, and the brace should not stop you from moving and being active. Having good-quality muscles is important for scoliosis.

What to do if there is rapid progression of spine curvature?

If you feel as though your spine is getting worse, you should communicate this to the team looking after you. It does not always mean that urgent intervention is required, and you should continue to be active. How quickly a curve progresses can vary from one person to the next, and sometimes people can feel as though their curve worsens during a period of rapid growth.

Larger Spinal Curves

You may still be referred to Physio for Assessment

This is just as important as with the smaller curves. Keeping the muscles around the spine (the core) strong and keeping the surrounding muscles (particularly the hamstrings) flexible can have a very positive impact on your symptoms. It can also help with any recovery if you have a procedure.

You will probably be referred to the Scoliosis Team

They will arrange for you to have appropriate imaging (X-ray +/- MRI – see above), and based on the results, they will advise you on their opinion about the best management. This may involve advice to monitor the spine and review you after an appropriate timeframe with further X-rays to see how the curve is changing over time. It may also be to refer you to the orthotics team for a brace.

You may be recommended Surgery

Surgery for scoliosis can sometimes be recommended. This will always be a joint decision, with the patient and family being involved in the final decision. The scoliosis team will explain why they feel surgery would be beneficial and will discuss what the surgery involves. Not everyone likes to hear the details around this, but it is important that the risks of any surgery are explained to you so that these can be used to weigh up if the procedure is the right decision for you.

There is no ‘rule’ about who should and should not have surgery, and it is a very individual decision, taking lots of different things into account. What is right for one person may not be for the next. This is also the case when a surgeon decides what exactly to do to control the scoliosis. Some operations may involve fusing the spine so that it cannot progress further, while some aim to control the spine while still allowing it to grow (sometimes with a plan to fuse it when the growth is sufficient). Your scoliosis team will be able to explain their decision to you, so please do ask any questions you might have.

After Surgery

The journey after surgery can vary depending on the type of operation that you have. The scoliosis team will be able to explain the details of any pathway to you, which may vary. Please use the below explanations as broad information only – any advice from your treating team overrides anything in this document, and if you are in doubt, please do ask your treating team.

In general, you should expect to have a review of the surgical wound at around the 14-day mark. This will involve removing any dressings and inspecting the wound for good healing and to ensure there are no issues. If everything is going well, then you will likely be allowed to get the wound wet shortly after this appointment (usually not soaking in the bath, however).

It will take a while for you to get used to the new body shape, and it will be normal to feel tired and have some pain (painkillers can help with this). People often find that regular movement helps to make the pain feel better (it also has some other benefits).

Initially, you’ll likely be given some breathing exercises to really make sure the lungs get air all the way to the bottom. It’s also important to keep everything moving – often you’ll be advised to do some simple exercises with the shoulders and hands, as well as the knees, feet, and ankles, to keep the joints from getting stiff.

If you can, walking should be gradually built up over the first 6 weeks, doing just that little bit more every day. By 3 months, you should be able to manage some longer walks, perhaps with some hills. By 6-12 months, we would expect you to be at a level normal for you.

Swimming can be really helpful for recovery but should be approached with some caution – obviously, you shouldn’t get into a pool until the wound is fully healed. Initially, it might involve starting with walking in the water for that little extra resistance. You should be careful around the potentially slippery pool edges. Your scoliosis team will guide you through this.

Cycling on a static bike can usually be introduced gradually from about 6 weeks, gradually building up to short outdoor rides on flat ground by 3-6 months.

Running should not be undertaken in the first 3 months due to the repetitive jolting activity (and most people would find this difficult to tolerate anyway). When it is introduced, it should be very gradual and built slowly.

Other sports should usually be avoided initially and then very gradually introduced – concentrating initially on control and gentle, limited movements and slowly building up. Contact elements in sports and those which involve impact/risk should generally be avoided for at least 1 year to allow any fusion to fully mature.

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

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