Scoliosis surgery

Children’s and Young People’s Scoliosis Services

All information provided in this leaflet is general and you may have specific advice which varies from this. 

Please follow your surgeon and the specialist nurse’s (SpN) advice at all times.

While you are waiting for surgery

Adolescent Idiopathic Scoliosis (AIS) and pain

AIS is a painless condition. This definition can be upsetting for many people who feel pain and think no-one believes them.

What you are feeling is not due to the spine itself being curved, it is the muscle imbalance caused by it as one side pulls much more than the other. Therefore, although AIS itself doesn’t cause pain, the muscles surrounding the spine can cause you to be uncomfortable.

It is best for young people to avoid regular medication for pain. If needed, try paracetamol with ibuprofen gel applied directly to the affected areas

Heat can sometimes help. When resting, try a hot water bottle, or when active, try heat patches. A Tens machine could be tried, and these are widely available. They work for some people and not others. 

As the pain is coming from the muscles, strengthening them is the key. Back pain takes a long time to get better and doing exercises may initially make it feel worse however you will feel better if you continue the regime and you will have a stronger back for life.

Exercises

Regular swimming 2 or 3 times a week for 30 minutes is the best exercise for the back to help strengthen. 

Yoga and Pilates exercises are beneficial for the back, as are specific exercises we can provide in a sheet from the physiotherapists.  It is best to do some core strengthening exercises as part of your daily routine. 

Diet

Maintain a healthy weight and try to keep a good posture – avoid stooping forward and stand tall. 

What should I do if nothing is helping?

If you are still in pain for at least 6 months and have tried all methods, please speak to your consultant.

You may need a referral to the pain team to help you understand and process the pain. Unfortunately, this service is limited and has a long waiting list, but if needed, you can be referred.

Pre-assessment

• The pre-assessment stage will take 1 to 4 months before you have your surgery
• The first appointment will be around 3 hours
• You will be seen by the SpN first and then the surgeon. This will give you the opportunity to discuss and questions to queries you may have.

X-ray

You will need to change into a gown if you need an x-ray. You may need front standing, side standing, and bending x-rays.

Your consultant will decide if they can be done standing or lying down. These x-rays help with surgery planning by showing the surgeon how flexible your spine is and which levels need to be fused. 

Photographs

You will need to have photographs taken in our photography studio before surgery and 6 months to 1 year after surgery. 

If the pre-assessment day is not a suitable time for photographs to be taken or medical illustration do not have an appointment free, they can be taken at another time. The photographs will show how your back looks and to show how much you can move and bend.

Photographs will need to be taken in your underwear so we can see as much of your back as possible.  

Height and weight

Your height will be taken before and after surgery. This will show how much you grow when your spine is straightened. 

Your weight needs to be taken to work out the correct dose of medicines to give you during and after the operation. 

Lung function test

We need to check how strong your lungs are by a lung function test, which involves blowing hard into a tube. The paediatric respiratory SpN will do this test. 

Blood tests

You will need to have a blood test to check your overall health and to find out which blood group you are in case you need a transfusion during or after surgery. Freezing spray is available to help numb the area if you prefer.

MRSA Swabs

You need a test for the presence of MRSA on your skin. This ‘bug’ is on the skin of many people and doesn’t usually cause any problems. However, when having surgery the skin needs to be clear to avoid infection.  

A swab is rubbed around your nostrils and another at the very top of your legs. You can do these. The swab gets sent to the lab for testing and if positive, you will be given a body wash and nasal cream then re-tested. 

Prescription

You will be given a prescription for a mild laxative to take each day for seven days before surgery. The laxative will not stop you doing your usual activities. It needs collecting from the outpatient pharmacy.

The laxative will make sure you are not constipated when you come in for surgery and reduces the chance of you being uncomfortable when recovering. 

Visit to the ward

You will be shown the children and young people’s surgical ward and the paediatric critical care unit. Here you will get chance to meet some of the team who may care for you when you have your surgery.

British spine registry

The SpN will ask for your and your parents’ consent for basic information about your condition and surgery to be entered onto a national database. You will be given an information sheet about this.

Pain Tools

The SpN will talk to you about pain management after surgery and how the staff on the ward and PCCU will monitor and reduce your pain.

Questions

Throughout the pre-assessment the SpN will answer any questions you have. Please write them down before the appointment if you think you might forget them.

The SpN will also ask you some questions for the admission documentation, for example, medical and surgical history, allergies, medications taken, dietary restrictions, religion and the names and contact details of everyone you live with. 

Consent

Your consultant will talk about the surgery and will ask you and your parent or carer to sign a consent form. You will also be given an information booklet which details the risks and benefits of surgery and asks you and your parent or carer to sign to say you want to have the surgery done.

Pre-Admission

This appointment is in the week before surgery and is likely to be for 1 to 2 hours. During this time anything we missed in the pre-assessment can be done and also:-

• Blood test to confirm your blood group and to save some units of blood for surgery
• X-rays if not taken recently
• Height and weight checked again
• Urine test, including routine pregnancy test for all girls over 11years of age.
• See your consultant and the SpN to answer any questions

Things to consider bringing into hospital

Toiletries and personal care

• Toothbrush and toothpaste

• Deodorant or body spray

• Any face cleaning products used at home

• Handheld mirror if required, handheld fan and cooling spray

• Baby wipes, face cloth and soap. You can’t shower until the wound is healed
  (After 2 week check)

• Shampoo and conditioner. If you would like your hair washing in bed before you go home. Brush or comb, dry shampoo if required

• Something without metal in it to tie hair up for theatre, if appropriate. Scalp plaits for long hair are useful

• Girls – sanitary towels just in case. Surgery can sometimes bring periods on when they’re not due.

• Lip balm. Lips can become very dry

• Bonjela or similar. Sometimes the inside of the mouth can be a bit sore where the breathing tube was

• Glasses, if worn

Medication

• Any regular medications you usually take (in their original packaging please) so the nurses can put them in the locked cupboards and give you them with your other medications

Clothes

• Pyjamas or nighties. Front buttoning ones are best, to avoid having to reach over your head. You can wear the hospital gowns throughout your stay if you prefer

• Dressing gown. If you wear one or tend to be cold

• Underwear. You probably won’t be comfortable wearing a bra at least for a few days

• Slippers. Make sure these are with non-slip soles

• Something comfortable and loose to travel home in

Other

• Favourite cuddly toy to take to theatre (if you want to!). Pillow and, or blanket from home if preferred

• Food and drink. Anything can be brought in if wanted. It is important to try to eat post-op to build your strength up so if there is anything you particularly like that is not available on the hospital menu, ask someone to bring it in for you

• Money and, or card

Day of surgery

• The day before surgery you can eat and drink up to midnight. Eating after this time can result in your stomach contents entering the lungs
• You can then have sips of water or dilute juice until 6am. Take your regular medication unless advised not to
• After 6am you must have nothing at all. This includes chewing gum, sucking on a sweet or swallowing mouthwash or toothpaste

• Although cancellations are extremely difficult for everyone, they do sometimes happen, even at this late stage. For surgery to go ahead we need the full specialised team to be available, and for there to be a bed on PCCU. If surgery is cancelled we will try to re-book as soon as possible and we will keep you informed at all times.
• The SpN will meet you and admit you to the ward
• The remaining paperwork will be completed
• Your temperature, pulse, oxygen levels and blood pressure will be recorded
• You will have some numbing cream put on the back of both hands so you won’t feel the sharpness of the cannula being inserted in the anaesthetic room.
• You will meet your anaesthetist, who will explain what happens in the anaesthetic room to you and you can ask any questions. You may meet one of the physiotherapists
• You may have some pain medications if your anaesthetist prescribes them
• You will be given a gown to put on
• You will need to walk to theatre, with a parent or carer and the SpN, so you will need some slippers or shoes for this.

Paediatric Critical Care Unit    

Most people spend the first two nights in the unit. This is because there are more nurses to patients and the staff can therefore give you all the attention you need when you have just had major surgery. 

The unit’s experienced team delivers care with a positive outlook that is compassionate and kind. All the staff treat young people and their families how they would want to be treated themselves.  

Although a parent is welcome to stay with their child at any time, during ward rounds and handovers, or if other children and being admitted, having procedures done, or at other exceptional times, parents may be asked to temporarily leave the unit to maintain privacy, dignity and confidentiality.

When visiting the unit please remove outdoor clothing (hooks are available), do not come in ‘working clothes’ and avoid having the residue of second-hand smoke on clothing.

• Please keep valuables with you at all times
• No-one should visit if they have symptoms of any virus or infection, including cold, flu, diarrhoea or vomiting.

When your child is staying in the PCCU, we aim to offer you a parents’ room to stay in. These have ensuite shower rooms, a fridge and facilities to make a hot drink. They also have a direct line telephone to PCCU (54667) so you are only a phone call away from your child’s bed side.

It is important to get as much rest as possible during this time, as when you leave PCCU you will start to take over more of your child’s care to prepare for discharge home, and this will involve being woken during the night.

Lack of sleep in both the child and parent can make the hospital stay more stressful and slow recovery

Ward 22 (Children’s surgery and trauma)  

The ward staff care for babies to 18-year-olds who have had accidents or need surgery.

There are a wide range of specialities who admit patients to this ward, including the spine team. The ward is usually very busy and you will go back to the ward when you have recovered from the surgery enough to begin the process of rehabilitation ready for discharge home.

You will have a nurse allocated to you but they will have several other patients and could be busy with them or even off the ward. Please therefore be patient and they will get to you as soon as possible.

Chaplaincy team

The chaplaincy team will visit anyone, regardless of faith. They can be contacted at any time for support, blessing or baptism. There is also a chapel in the hospital.

Smoking

The hospital buildings, car parks and grounds are all ‘No Smoking’ areas.

Parking

Parents staying with children in hospital do not currently pay parking fees. When you are ready to go home the ward staff will phone security and they will raise the barrier when you leave. 

Questions and answers about scoliosis surgery

How long does the surgery last?

The anaesthetic preparation and surgery take a long time – usually all day. You will go down to theatre around 9 to 9.30 and will be back any time after about 5pm but it could be much later.

The theatre team will have your parent or carer’s mobile phone number to contact them if they are needed but generally the team concentrate on doing the surgery and will not speak to your parent or carer until the surgery has finished. 

What tubes will I have in? 

There will be quite a few, at least for the first couple of days

• A urinary catheter. This goes to your bladder and lets urine (wee) come out without you having to get up and go to the toilet. This is put in when you are asleep, and the nurses take it out after a few days. It feels a bit strange but does not hurt.
• Wound drains. These are to remove any blood from the wound area and are removed when there is not much coming out of them, usually around 3 days.
• Chest drain. If you have surgery anteriorly (a wound at the side), or if you have a pneumothorax (collapsed lung) you will have a chest drain inserted. This is to clear any blood, fluid or air, allowing the lung to expand properly. These drains will usually be removed on the second or third post-operative day. It will be uncomfortable but is quick and you will be given pain medication beforehand. You will need a chest x-ray following removal.
• Monitoring. You will also have a monitor attached to one of your fingers or toes and a blood pressure cuff on your arm. In PCCU you will also have wires attached to 3 stickers on your chest which monitor your heart.
• Oxygen. You may have an oxygen mask or nasal prongs when you are recovering from the anaesthetic and sometimes for a while afterwards.
• Cannula. Some medications and fluids will be given through a cannula (small plastic tube) into a vein, usually in your hand or arm. You may have 2 of these in case one stops working.
• Central line. You will also have a line into a vein in your neck from which the nurses can take blood samples and give blood, fluids or medications.

Will I be in pain after surgery?

Scoliosis surgery is a major operation and will involve some pain and discomfort, but this is minimised as much as possible.

During the operation you may get some medicine which numbs the spinal area and this area stays numb for a couple of days.

The anaesthetist will give you sufficient pain relieving medications in theatre and recovery, and you will get more as needed by a Patient Controlled Analgesia (PCA) device. This is a button you can press to give you more pain relief medicine when you need it. It has a special ‘lock out’ setting that does not allow you to give yourself too much medicine so it is safe. 

Sometimes you may also have a constant low-dose morphine infusion through one of the lines you have. The ward staff will also give you regular medications by mouth and you will go home with the same ones that keep your pain under control when you are on the ward.

Will I get pain or discomfort anywhere other than my back?

If you have a chest drain, the site of the chest drain can be sore. You may find the urinary catheter a bit uncomfortable. You may have mild, temporary skin reddening where your bones stick out at your hips, shoulders and, or knees, or on your face.

This is due to the positioning required for surgery and is common after long operations. 

As you have been lying on your front for many hours you may find that your face is quite puffy for a day or two following surgery. 

What do I need to tell the surgeons and medical or nursing staff about?

Anything at all that concerns you. 

• Any limb weakness or numbness should be reported.
• Leg pain can occasionally be caused by irritation of the nerves or inflammation.

Chest pain

• Difficulty breathing
• Not able to pass urine
• Feeling sick
• Vomiting should also be reported.

Will I need a blood transfusion?

Your own blood lost during surgery is saved whilst in theatre and put through a filtering machine, then given back to you. Additional blood from a donor may be required whist you are recovering in hospital if your blood tests and symptoms show that this is needed. 

When can I eat and drink?

During the first few days after surgery you probably won’t feel like eating much, due to the anaesthesia, operation and because you are not moving about as much. 

You will be given some fluids directly into your bloodstream to make sure you don’t become dehydrated. You may find that you feel sickly. The nurses can give you medicines to try to stop this.

When you are able to eat, it is a good idea to eat foods high in fibre (fruits, vegetables, wholemeal bread and cereals) and drink plenty of fluids as these will reduce constipation. 

What will my wound look like?

Depending on the exact type of surgery the position and length of the wound will vary. 

• You will have stitches hidden under the skin which do not need removal and will dissolve within 3 weeks.
• There will be paper strips covering the wound and these are removed two weeks after surgery with the dressings if the wound has fully healed.
• You will be given an appointment with the SpN to review your wound, or if it is easier you can go to see your GP practice nurse.
• You will have a scar in the middle of the back for surgery done posteriorly (through the back of the spine) and scars at the side of the chest if the procedure is done anteriorly (through the front of the spine).
• Scars may fade to a certain extent after 18 months.

Some people are prone to keloid scarring, which results in an enlarged, raised scar. This is more prevalent in darker skin and if it occurs your consultant can refer you to a plastic surgeon for advice and treatment. 

Sometimes the scar widens, usually at the top. Again, if this is a concern, you can be referred. 

When can I get up after surgery?

You will be helped to get up by the physiotherapists as soon as you feel comfortable after surgery, you will be allowed to sit up after surgery – at first this will be in bed, but you can sit in a chair as you progress.

On the second or third post-operative day you will be standing and walking a few steps in the room. 

Will I be able to sleep well?

You may have trouble sleeping after surgery. This is due to a number of things – being in a strange environment, discomfort, worries and anxieties. The disruption to normal routines can also make you tired so you might fall asleep at times during the day. 

How long will I be in hospital?

For most people, surgery is single stage and usually you stay for around 4-6 days, but this depends on how well you have recovered. You need to be able to mobilise, eat and drink and be comfortable before you can be discharged home.  

Will I look completely straight afterwards?

The aims of scoliosis surgery are to partially correct the curve as safely as possible and to prevent the curve getting worse. You will stand straighter and be taller after surgery.

Everyone is different and there are lots of different possible outcomes. Your surgeon will have discussed this with you. As your body and brain adapted to your spinal curve before surgery, it can take a while for them to adapt to the new you. 

The muscles that support your spine will take time to adapt after your surgery.

• Try standing in front of a mirror to see what your new posture looks like as it is easier to adjust this way.
• Ask your family and friends to remind you to stand or sit up tall when you are with them
• Try standing with your back to a wall pushing your shoulders back so they touch the wall.

How flexible will I be?

Your spine can be divided into three parts – the cervical (neck), thoracic (rib cage area) and lumbar (lower back).

Most scoliosis surgery involves fusing the thoracic and top of the lumbar spine. Fusing the thoracic spine can limit rotation movement and fusing the lumbar spine can limit bending. Most patients will lose some movement of their spine, but the hips and upper spine compensate and so the body adapts well. A lot depends on how flexible you were pre-operatively.

For those who are flexible they can often still touch the floor with their fingers, even after having surgery down to the L4 level near the bottom of the lumbar spine. 

When can I go in the shower?

It is safe to shower when the wound has been seen by the specialist nurse or GP practice nurse and it has healed fully – about 2 weeks after surgery.  

Always pat the wound dry rather than rubbing. You will need help initially, as you may feel weak when you stand. You may also need help washing your hair and drying your legs and feet. 

We try to offer to wash your hair in bed before you go home as the staff have special equipment to enable them to do this for you. 

What will my back feel like as I recover?

The wound site may itch as the skin heals, and then may be a bit numb – it may take up to a year for the feeling to come back. Sometimes the skin can be very sensitive. This should settle, but if it is prolonged and causing problems, we may be able to refer you for desensitisation therapy.

Occasionally you may be able to feel the metalwork, especially if you are very slim. You will get used to this!

As the muscles heal you can get quite sharp, shooting pains, especially in the shoulders. This can happen for months after surgery. 

Will I have a brace after surgery?

Occasionally a brace is needed after surgery to support the spine further. This decision is made during surgery and will be discussed during recovery, to be arranged either when you are still in hospital or at an outpatient appointment afterwards. 

After discharge home when should I call the team or GP?

Please inform the SpN of any concerns or if you have general questions, but if the specialist nurse is not available for advice, please contact the appropriate service: 

• Wound – redness, discharge, gaping
  Contact surgical team (via the secretary)
• High fever
  Contact GP
• Numbness, weakness, severe shooting pains in the legs
  Contact surgical team
• Increase in pain at the wound site
  Contact surgical team
• Excessive swelling in the legs and, or calf muscle swelling
  Contact urgent care centre
• Urinary problems, such as pain when passing urine
  Contact GP
• Constipation
  Contact GP
• Vomiting or abdominal pain
  Contact GP

When can I stop the pain medication?

When you feel comfortable – there is no set time.

• Reduce the frequency of morphine doses first, the Ibuprofen, then lastly the paracetamol.  
• If you need more morphine, the GP will prescribe it for you. 
• Paracetamol and ibuprofen can be bought over the counter.

What aftercare will I have?

You will be seen in clinic at around 6 to 8 weeks, 6 months, 1 year and 2 years. You can contact the team at any time if you have concerns. 

Travelling

• You can travel in a car on discharge from hospital, but you may get uncomfortable on long distance journeys
• You should not drive for 6 weeks, and you need to check with your insurance company
• After 6 weeks you can take a short flight, up to about 3 hours
• Long haul flights you should wait about 3 months.

When can I go back to school or college?

You should be able to return after 4 to 6 weeks.

It might be useful to speak to the school or college about going in for half days at first. Until then, the hospital teaching service will liaise with schools to ensure you don’t miss too much work and may arrange home tuition.

Can I sunbathe?

You should protect the scar from sunlight for a year then follow the usual precautions for sunbathing.

Will I need further surgery and will the metalwork need to be removed?

This rarely happens. The metal acts like a scaffold for one to two years until the fusion of the spine occurs. The metal is not usually removed, unless in the rare event it causes any problems.

Will the metalwork set off airport security scanners?

The metal is titanium and, or cobalt chrome.  Walk through scanners are not usually activated but handheld ones could be. A quick explanation to the security staff beforehand may ease your worries. You could carry a copy of your post-operative x-ray when you travel. 

Will I be able to have a baby?

Your surgery does not prevent you conceiving, carrying a baby or having a normal delivery. You should, however, let your midwife know at the booking in appointment that you have had scoliosis surgery.

If your surgery extended to your lower back, then epidural analgesia during labour may be difficult. When you attend for delivery, make sure the team know and show them a copy of your x-ray.

Most women get back pain during the later stages of pregnancy and your risk is only slightly higher. Building up your back muscle strength regularly before pregnancy is recommended.

Further information:

• www.sauk.org.uk
• www.srs.org
• www.southtees.nhs.uk/services/children-and-young-people/speciality/childrens-spine-service/

Videos

https://www.youtube.com/watch?v=NRqQshJxRR4

https://www.youtube.com/watch?v=TjbLzPGyac8

Patient experience

South Tees Hospitals NHS Foundation Trust would like your feedback. If you wish to share your experience about your care and treatment or on behalf of a patient, please contact The Patient Experience Department who will advise you on how best to do this.

This service is based at The James Cook University Hospital but also covers the Friarage Hospital in Northallerton, our community hospitals and community health services.

To ensure we meet your communication needs please inform the Patient Experience Department of any special requirements, for example; braille or large print.

T: 01642 835964
E: [email protected]

The James Cook University Hospital, Marton Road, Middlesbrough, TS4 3BW.
Telephone: 01642 850850

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