Understanding spinal braces: Information for people with myeloma

Myeloma can sometimes weaken the bones, so you will have had scans to check your spine. A specialist spinal team has reviewed them and believes a spinal brace is the best option for you right now. Visit our web page about myeloma and bone health to find out more.

There are 2 main types of spinal brace:

• full spinal brace called CTLSO (cervical thoracic lumbar sacral orthotic), which supports your neck and your whole spine (Image 1)
• spinal brace without neck support called TLSO (thoraco-lumbar sacral orthotic), which supports the middle and lower parts of your spine (Image 2)

Both braces help to stabilise your spine and control pain. The type you need depends on which parts of your spine are affected. Your doctor will explain which brace is right for you.

Image 1: Front and side view of a person wearing a CTLSO spinal brace 

Image 2: Front and side view of a person wearing a TLSO spinal brace 

You will receive a custom-made spinal brace. It will be moulded to your body shape and you can choose the colour you prefer.

A spinal brace helps to keep your posture upright while your myeloma treatment works to heal your bones. It may also help to manage your pain and provide some protection if you were to fall.

There is not much research about the risks of spinal braces in people with myeloma. But studies of people who wear spinal braces for other spine problems have found some possible risks. These include:

• skin irritation or pressure sores if the spinal brace does not fit well 
• muscle weakness from less movement 

In some people, new spine fractures may occur, even while wearing the spinal brace. This can happen because the brace supports the spine from the outside but does not strengthen the bones themselves. In conditions like myeloma, the bones may take longer to become stronger. Because of this, fractures can occasionally still happen despite wearing the brace.

Your healthcare team will check your spinal brace regularly and support you to lower these risks. Contact them if you notice pain, redness or changes in how your spinal brace feels. You can find their details further down the page.

Your doctors believe that a spinal brace is the best option for you at this time. The only alternative is to choose not to wear one. If you decide not to wear the brace we give you, there is a risk that:

• your existing spinal fracture may get worse
• new fractures may develop in your spine
• you may damage your spinal cord, which carries messages between your brain and the rest of your body that control the movement and feeling

Your healthcare team is here to guide you and help you make the choice that feels right for you. Please feel free to ask any questions or share any concerns you may have.

Our myeloma team works closely with the neurosurgeons and the spinal advanced nurse practitioners (ANPs) at the National Hospital for Neurology and Neurosurgery. Together, we make sure people with myeloma who have spinal problems get the best care and advice. 

You may also see: 

• an orthotist – a spinal brace specialist
• an occupational therapist who can help you manage everyday tasks, such as washing, dressing or preparing meals
• a physiotherapist who can help to improve movement and physical activity

Waiting for your spinal brace

While you wait for your brace, your healthcare team will tell you what is safe for you to do. Depending on your situation, you may be able to walk around freely, or there may be some restrictions to follow. If you are unsure, please ask your team. 

Making your spinal brace (casting)

• If you are in hospital: An orthotist will visit you on the ward to measure you for your spinal brace.
• If you are at home: An orthotist will contact you to make an appointment to have your spinal brace made. They work at several locations across London and will arrange to see you at the site closest and most convenient for you.

Casting process

• You will wear your underwear and a thin garment called a body stockinette.
• You will usually stand for 10 – 15 minutes while holding on to something for support.
• If you are in a lot of pain or find it difficult to stand, tell your nurse so they can give you pain relief before casting. If needed, the orthotist can take the cast while you are lying down or sitting.
• Where possible, the orthotist will make a plaster mould of your body while you are standing, as this gives the best fit. The process takes about 10 – 15 minutes.
• You can choose a colour for your spinal brace from the colour chart below (Image 3). Some colours may not be available, so please choose a first and second option.
• Your spinal brace will be ready in about 2 to 3 days.

Image 3: Spinal brace colour chart 

Fitting your spinal brace

If you are in hospital, a nurse, physiotherapist or occupational therapist will help you to put your spinal brace on for the first time.  

If you are at home, you will visit the orthotist to collect your spinal brace and have it fitted. 

The orthotist, nurse, physiotherapist or occupational therapist will: 

• show you and your family how to put the spinal brace on and take it off 
• teach you how to care for your skin 
• show you how to look after your spinal brace 
• talk to you about what level of physical activity is safe and appropriate for you 
• check if you need equipment or extra support at home 
• teach you how to manage daily activities, such as washing, dressing, getting in and out of your bed and chairs, using the stairs or doing light tasks 
• refer you to other services if needed, such as physiotherapy, social services, psychology, dietetics or pain support service 

Please note: It is normal for the spinal brace to feel uncomfortable, heavy or hot at first. It may take some time to get used to it.

Going home (if you are in hospital)

You can go home when: 

• your health is stable and your pain is under control
• you can move, get in and out of bed and a chair, wash, dress and use stairs safely
• any equipment or support you need at home is ready for you

You will need someone to accompany you home. You can use public transport unless your healthcare team tells you not to. If someone is driving you, please read our tips on how to get in and out of the car. You can find them further down the page. 

Follow-up checks

• 6-week check: About 6 weeks after your spinal brace is fitted, you will have an in-person appointment with a spinal advanced nurse practitioner (ANP). This will take place at our National Hospital for Neurology and Neurosurgery.   The nurse practitioner will examine you, check your spinal brace and request an X-ray of your spine. If needed, they may also request other scans, such as CT or MRI. They will talk to you about this during your appointment. 
• 12-week check: About 12 weeks after fitting, you will have another follow-up appointment with a spinal advanced nurse practitioner (ANP). This may be in person or by phone. They will decide if you can stop wearing your spinal brace or if you need it for longer.  

How long you need to wear your spinal brace depends on your condition and how your treatment is progressing. Your healthcare team will guide you and show you how to safely stop wearing your spinal brace.

If you have not received an appointment for your 6-week or 12-week check, please contact us. You can find our contact details further down the page.

Please wear your spinal brace whenever you are sitting or standing, and remove it before you lie down in bed.  

Putting on your CTLSO

It is difficult to put on your CTLSO by yourself, so you will need someone to help you fit it safely. This could be a family member or a friend. If that’s not possible, let us know and we will arrange for a carer to support you.

1. Place the back section of the spinal brace against your back. Make sure the curve fits the hollow of your lower back.
2. Check that the sides sit snugly against your waist and the top fits tightly over your shoulders.
3. Place the front section so it overlaps the back section at the top and sides.
4. Fasten the shoulder straps, then the side straps (Image 4 below).
5. Start loosely, then pull both sides at the same time to tighten. This keeps the spinal brace even.
6. Look straight ahead. Your chin should rest on the spinal brace.
7. The spinal brace should feel tight and secure, but you should still be able to breathe, eat and drink.

Image 4: Fastening the straps of a CTLSO brace

Putting on your TLSO

1. Put the spinal brace on like a jacket. Gently stretch the opening and slide it on around you. Avoid twisting or turning too much. If it feels difficult, ask for help. 
2. Make sure the curve fits the hollow of your lower back. Check that the sides sit against your waist.  
3. Fasten the straps loosely at first. Then pull both sides at the same time to tighten and keep the spinal brace even (Image 4 above). 

How to make sure your spinal brace fits well

• Put your spinal brace on while standing.
• Fasten it tightly so it can work properly.
• It should feel snug and secure, but you must still be able to breathe, eat and drink.
• The spinal brace should not be too tight around your armpits. This can damage your skin.
• Check the spinal brace when you sit down. If it rises, tighten it.

Signs your spinal brace does not fit properly 

Orthotists recommend checking for the following signs: 

• The gap at the front of your TLSO brace should not be wider than 10cm (4 inches).
• The front edges of your TLSO brace should not overlap, and the brace should feel secure rather than loose.
• For a CTLSO brace, the front and back sections normally overlap at the top and sides. However, if they overlap and the brace still feels loose, it may need adjusting.
• You notice red marks or patches on your skin that do not fade after removing the spinal brace. This may mean the brace is applying too much pressure and needs adjusting.

It is normal to have some red marks on your skin after removing the spinal brace, but call for advice if they:  

• last longer than 2 to 3 hours
• are painful
• look like they may blister

If you notice any of these signs, please email the orthotist team at westlondonorthotics@gmail.com as soon as possible. They check their emails 7 days a week and will respond as soon as they can. If you have not heard back from them or you do not have access to an email account, please contact the UCLH haematology helpline number You can find their details further down the page. 

Looking after your skin

• Check your skin before and after every use. Use a mirror if needed. If you find this difficult, ask someone to help.
• It can help to cover any skin that comes into contact with the spinal brace. For example, wearing a short-sleeved, breathable top rather than a camisole can help to protect your skin and reduce rubbing.
• In hot weather, you may sweat more. If your skin gets damp, remove the spinal brace and dry your skin before putting it back on. 

Looking after your spinal brace

What to do 

• Check your spinal brace before each use. Look for sharp edges, loose parts or anything inside that could hurt you. 
• Clean it with a damp cloth and warm soapy water. Let it dry naturally.  

What not to do

• Do not pad the spinal brace yourself. This can increase pressure on your skin.
• Do not get it soaked in water.
• Do not heat, glue, bend or try to repair the spinal brace.
• Do not use strong cleaning chemicals.
• Do not dry the spinal brace with heat, such as radiator or hair dryer. This can damage it.
• Do not try to toughen your skin with alcohol or other products.

What to expect

Your spinal brace is designed to keep your spine safe. Because it limits movement, you may feel stiff or restricted when wearing it. In warmer weather, the spinal brace can also feel hot and uncomfortable. Some people find that using a handheld fan helps them to stay cooler.

Remember, this is only temporary. Following your healthcare team’s advice will help you recover well in the long run.

At home

Small changes at home can make daily life easier:  

• Move everyday items to waist height to avoid bending. 
• Take extra care when using ovens, fridges or low cupboards. See the guidance on picking things up from the floor detailed later on this page. 

Shopping and housework

It is important to stay active and keep your routine where possible. You may still need to make some adjustments or ask for help:

• Avoid lifting more than 2kg (about the weight of a bag of sugar or a full kettle).
• Ask family or friends to help you with heavier tasks, like food shopping or housework.

Daily activities

Sleeping

Do not wear your spinal brace in bed. You can move freely in bed and sleep in any position that feels comfortable.

Sitting

You may find it hard to get comfortable when sitting. Many patients have told us that firm, straight-backed chairs are the easiest to use when wearing a spinal brace.

• Avoid low chairs and sofas because they push the spinal brace up.
• Use cushions or pillows behind you or under your arms for support.
• If sitting for a long time, you may loosen the straps slightly. Remember to tighten them again when you stand up.

Getting in and out of bed 

Use the log roll technique to protect your spine. This technique helps you turn over while keeping your spine straight and aligned.

To get out of bed:

1. Position yourself close to the side of the bed.
2. Roll onto your side.
3. Bend your knees and lower your legs over the edge of the bed.
4. Push up with your arms to sit up.

To get in bed: 

1. Sit down on the bed.
2. Move your bottom back towards the middle of the bed.
3. Bend your elbow and lower yourself onto your side.
4. Lift both legs onto the bed.
5. Roll onto your back and get into a comfortable position.

Showering

Remove the spinal brace before showering. If possible, have someone nearby in case you need support. To stay safe: 

• use a shower seat or non-slip mat if you feel unsteady
• avoid bending or twisting
• try a long-handled sponge to wash without straining

Dressing 

Wear thin, breathable clothing under your spinal brace to protect your skin. As bending can be difficult while wearing your spinal brace, many people find that slip-on shoes or trainers make it easier to stay independent.

• Avoid twisting your body when dressing.
• When dressing your lower body, lift your leg while sitting instead of bending your back.
• Ask an occupational therapist about dressing aids if you need help.  

Using the toilet 

You can use the toilet normally. If lowering is difficult, an occupational therapist may suggest temporary equipment.  

Picking things up from the floor 

You can safely pick things up from the floor by following the advice below. First make sure your balance is good and your legs are strong. 

1. Stand close to the object with your feet shoulder-width apart.
2. Bend at your hips and knees, not your waist.
3. Keep your back straight and your core engaged to support your spine.
4. Pick up the item and hold it close to your body.
5. Straighten your hips and knees to stand up.

You may also find a grabber tool (Image 5) useful for picking up lighter items.

Image 5: Grabber tool for picking up lighter items 

Sexual activity

If you feel ready to have sex, you can try positions that don’t cause pain, such as lying side by side (spooning). For more advice, talk to a spinal advanced nurse practitioner (ANP).  

Driving

Do not drive while wearing your spinal brace as you cannot safely check mirrors or blind spots. Wait for your spinal team to tell you when you can safely drive again. 

Getting in and out of the car

1. Stand with your back to the car seat. 
2. Bend your hips and knees while keeping your back straight.  
3. Lower yourself slowly onto the seat, using your hands for support if needed. 
4. Turn your bottom and bring your legs into the car. 
5. Adjust your seat and loosen the straps of your spinal brace slightly if needed. 

Being physically active while wearing your spinal brace

Staying active is important for your recovery. Try to move every day, even if your exercise options are limited.

• Avoid high-impact activities such as running or jumping, as well as twisting, bending or heavy lifting.
• Walking each day is safe and helps to keep you strong and fit.
• Your physiotherapist will give you an exercise plan tailored to your needs.

Stairs and kerbs

You may find stairs and kerbs more difficult because you can’t easily look down. To stay safe, we recommend that you: 

• always hold the handrail when using stairs
• go up or down sideways for better balance
• ask someone to guide you when stepping off kerbs or walking on uneven ground

Eating and drinking

This type of spinal brace can make eating and drinking more difficult because it restricts head and jaw movement.  

• Use a straw for drinks. Allow hot drinks to cool first.
• Wipe the inside of the neck area of your spinal brace after meals in case food has slipped down inside. This will help to protect your skin.

Using the toilet

A CTLSO brace can also make personal care more difficult, especially reaching to wipe after using the toilet. Some people may need help from a family member or carer. Others may find toileting aids helpful for maintaining independence, such as a long-handled wiping aid.

Your healthcare team will let you know when it is safe to stop wearing your spinal brace. This is usually based on how your recovery is progressing and the results of your recent scans.

How to gradually stop wearing your spinal brace (weaning)

• Start by taking your spinal brace off for 1 to 2 hours at a time, twice a day, while at home. You can do this for 3 to 4 days.
• If you stay comfortable after this time, you can try not wearing the spinal brace at all while at home.
• After about 10 to 14 days, you can start going outside without the spinal brace on.
• For the first month, you still need to wear the spinal brace when travelling in a car, bus or train.

If you feel you need more time to adjust, that is completely fine. Go at your own pace. The goal is to eventually stop wearing the spinal brace altogether. 

What to expect

• It’s normal to feel some muscle aching when you stop wearing the spinal brace. This usually improves with time and with support from your physiotherapist. 

• If you notice a sudden increase in spinal pain, put the spinal brace back on straight away. Contact your local haematology team as soon as possible. If you cannot reach them, go to your nearest Emergency Department (A&E) and call the UCLH haematology helpline:

  020 3447 7359 (Monday to Friday, 9am to 5pm)
  07852 220 900 (out of hours, weekends and bank holidays)

For the first month, stick to gentle exercise such as:  

• walking
• using a static bike
• exercises given to you by your physiotherapist

Please avoid high-impact exercise such as:

• running
• heavy weightlifting
• rowing machines
• road cycling

Your healthcare team will give you individual guidance based on your progress.

Call the UCLH haematology helpline on 020 3447 7359 (Monday to Friday, 9am to 5pm) or 07852 220 900 (out of hours) if you:

1. have not heard from the orthotist to make your spinal brace
2. have not heard from the orthotist about your spinal brace not fitting correctly
3. cannot email the orthotist because you do not have an email account
4. notice:
   • new numbness or tingling
   • increase in pain
   • more difficulty moving or doing daily activities
   • trouble peeing or pooing

Email our orthotists, West London Orthotics at westlondonorthotics@gmail.com if:

1. your spinal brace does not fit correctly
2. your spinal brace is broken
3. there are any other issues with your spinal brace
4. you have red marks on your skin that last longer than 2 to 3 hours, are painful and look like they may blister

The orthotist team monitors emails 7 days a week and will respond as soon as they can.

Call the National Hospital for Neurology and Neurosurgery if you have not received your 6-week or 12-week follow-up appointment with the spinal advanced nurse practitioner (ANP).

Admin team telephone numbers (Monday – Friday, 9am – 5pm):

020 3448 3568

020 3448 3150

020 3448 3514

020 3448 3395

Myeloma UK

Myeloma bone disease – Symptoms and complications Infoguide

Managing Spinal Fractures in Myeloma – Myeloma Infoguide

UCLH cannot accept responsibility for information provided by other organisations.