FAQ
Here is a selection of questions that we get asked by callers on our helpline. If there is other information needed or for further advice please do not hesitate to call us on: 020 8964 1166 or e-mail: info@sauk.org.uk.
I have just been diagnosed with scoliosis, what is going to happen now?
>>When diagnosed with scoliosis by your GP, PE teacher or school nurse, it is important to remember that it isn’t the end of the world. We speak to many people with scoliosis, some of whom have had bracing, and some of whom have had surgery, and the key thing about them all is that they have gone on to lead the lives that they would have done, with or without scoliosis. After diagnosis you should ensure that you are being seen by a scoliosis specialist; there are around 35 scoliosis centres of excellence across the UK and you can find your nearest specialist by calling or emailing SAUK. At your first consultation you will be examined by the specialist (please note, the majority of scoliosis specialists are men), X-rays will be taken and you will be told the degree of curvature (called a Cobb angle), then the course of treatment will be discussed; for minor curvatures observation will be recommended; for moderate curvatures bracing might be considered; and for more major curvatures surgery will probably be what is recommended. It is important to remember that every scoliosis is different and there is no standard treatment, so consulting a specialist is essential.
Should I have noticed my child’s curve sooner?
>>Many parents feel that they have let their child down for not spotting scoliosis sooner. These feelings are very common, but unfounded. At the time when scoliosis starts to develop, which is usually during adolescence, most young people spend their time covered up in baggy clothes and don’t allow their parents to see their bodies. Young people get undressed in their bedrooms, wrap themselves up in towels and go in changing rooms on their own; so it is no surprise that a curvature can be tricky to spot. Most parents first notice scoliosis when the family is on holiday, since this is the one time of the year when a child’s bare back is exposed while wearing a swimming costume. Scoliosis can progress really rapidly, so over the course of a few months what was once a straight back could show signs of curving. As a parent the most important things to focus on are that the curvature has been identified, getting the child the right specialist supervision and giving them support.
Could the scoliosis have been prevented?
>>Scoliosis can only be prevented when it is due to rickets or poliomyelitis, which are both treatable diseases; happily both these diseases are now very rare. Nearly all British children are inoculated against poliomyelitis when they are babies, and rickets, which is caused by a vitamin deficiency (common in malnourishment), is easily prevented by a healthy diet.
Why has this happened to me?
>>Unfortunately this is a really difficult question to answer. In most cases the cause of scoliosis is idiopathic, which means that there is no known cause. Scoliosis in juvenile and adolescent patients is usually idiopathic. There is a genetic connection, with around 25% of those with a scoliosis having a direct relative with a curvature. The British Scoliosis Research Foundation (BSRF) is funding research into the causation of the disorder. For patients with neuromuscular or syndromal disorders, scoliosis is a secondary condition. In patients with congenital scoliosis the condition is usually a result of a spinal abnormality that is present at birth. Degenerative scoliosis in older people can often arise as a result of osteoporosis and arthritis.
Should I be seeing a scoliosis specialist?
>>It is fundamental to ensure is that you and your child are being seen by a scoliosis specialist. There are around 30 scoliosis specialist centres across the UK with only a handful of specialists at each. These specialists have expert knowledge of scoliosis and its treatment and see scoliosis patients all the time. To ensure that you are being seen by a scoliosis specialist please contact SAUK office who will give you details of your nearest specialist centre.
I have seen a scoliosis specialist and I am still unclear as to what to do and feel that I need a second opinion to make a decision on what course of treatment to have
>>It is quite usual to feel confused about what course of treatment to choose for yourself or your child, especially since some of the questions about scoliosis have no answer. It is absolutely fine to ask for a second opinion. If you need names of additional centres or specialists then you can get this information from us by calling or emailing the SAUK office. You may also find that it helps to talk through the specialist’s advice with someone, so calling the helpline may be beneficial and you can ask us as many questions as you like and we will try and help.
Will scoliosis mean that my child can no longer participate in sporting activities?
>>Having scoliosis places little limitation on a young person. If they are in no pain and under observation they can continue as they always have. Exercising and participating in sports is encouraged to keep healthy and flexible. However, it is advisable to avoid contact sports and extreme activities such as rugby, boxing, bungee jumping, skydiving and horse riding because these sports can put the spine under greater strain and increased risk.
Also, wearing a brace shouldn’t restrict a child too greatly; again avoidance of contact sports is strongly advised. After surgery, patients are strongly advised to slowly and gradually ease back into gentle exercise, waiting for at least a year to get back to high impact exercise and sporting activities.
Please do note that every case is different, so ensure that you consult your scoliosis specialist.
How can I encourage my teenager to wear their brace?
>>Encouraging a young person to wear a brace can be really hard. At SAUK we feel that offering support through other young members in the organisation can be very positive. If you are a member we can give you contact details of other young people with scoliosis in your area. You may also find that asking your child’s school to have a talk or assembly about scoliosis will not only raise awareness of the condition but also generate understanding among the child’s peer group as to why they are wearing the brace. This way children will learn about scoliosis and the difference will no longer be a taboo subject. It may even encourage new support for a child. We can provide resources to the school to give them a head start on potential lesson plans or posters and leaflets to decorate a noticeboard.
How long does it take to recover from scoliosis surgery?
>>Every person is very different when it comes to recovery. It can take between 5 and 14 days for recovery in hospital. Once at home, dependent on age, a patient will be resting and slowly building their strength for 6 weeks. Young people bounce back from scoliosis surgery and can expect to be back to school after 2 months, begin PE after 6 months, and by a year they are regarded as fully recovered. Older patients take a bit longer to get back on their feet, with the fusion taking between 9 months and a year to properly heal, and it will take 12-18 months for them to be fully recovered.
Will I have any problems with pregnancy?
>>Having a trouble free pregnancy is absolutely possible despite having scoliosis. In most cases there will be few, if any, problems, and many of our members past and present have happy, healthy families. In a very few cases, breathing can be restricted (especially in people who also have a neuromuscular condition). It is always sensible to discuss the management of labour in advance with a midwife, GP, obstetrician, anaesthetist, or pre-pregnancy councillor, because certain factors, such as the position adopted during labour and delivery, are important to be aware of.
Although idiopathic scoliosis sometimes runs in the family, this is unusual so parents can be reasonably reassured that the risk of the baby developing scoliosis is low. For more information about Pregnancy and Scoliosis, you can purchase a publication dedicated to the topic from our online store.
How can I manage my pain?
>>Pain management is a difficult subject because everyone has different experiences. Over the-counter painkillers such as paracetamol and ibuprofen can help some people. If these drugs are ineffective, then it is advisable to ask to be referred to a pain management clinic (there should be one at the nearest hospital). The patient will be prescribed stronger medication on prescription to help with the pain. As well as drug treatment, the patient may be advised to do light exercise such as swimming or walking, and Pilates can have some benefit. If Pilates is too strenuous then hydrotherapy and gentle massage can be of real benefit.
For more in depth information about pain management please download our online info sheet.
Can I drive after surgery?
>>In general it is better not to drive until you have been seen by the surgeon at your first outpatient appointment (6-8 weeks postoperatively). Patients often find that their car insurance company will not cover them to drive unless they have been given medical permission to do so.
I am not happy with how I have been treated by the specialist or at the hospital
>>Every hospital has a patient advice and liaison service (PALS). If you are unhappy with the way that you have been treated or have any other worry or concern in relation to your care, you should seek advice from the relevant PALS service, which will be more than happy to help.