BACKBONE ~ 100th issue ~ BACKBONE CONTENTS

3 Latest News

4 Treatment for Adult Degenerative Scoliosis

7 International Scoliosis Awareness Day

8 Eva Butterly

10 Scoliosis and breathing

14 SAUK Fundraising

17 Regional Representative updates

18 SAUK yesterday and today A note on the front cover

20 Coping with pain This is a special issue of Backbone, we have reached 100 and we wanted to commemorate this by commissioning David Rintoul a unique front cover. Hannah Webb is a 23 graphic design student at Manchester School of Art who is now seven years post Exercises for Adult Degenerative Scoliosis scoliosis surgery. She first created the 24 Wonky Spine illustration for an exhibition at the Whitworth, Manchester called ‘Take Hold’ which celebrated positive body image 27 Scoliosis Campaign Fund - thank you and self-worth. The design is of Hannah’s spine, pre-surgery. She said, ‘at the time I didn’t think it was mighty fine, but now I see Members stories on Adult Degenerative Scoliosis things differently. I hope this will encourage 28 others with scoliosis to feel the same.’

Editors: Stephanie Clark and Claire Curley Designed by: Emily Wilson Cover: Designed by Hannah Webb. Inside cover: Eva Butterly, © Stephen Black photography All uncaptioned images royalty free stock images, © Patrica Wamaitha Ng’ang’a or author’s own. Printed in Great Britain by The Lavenham Press on Pure White Silk, a silk coated, high quality paper made from 100% recycled fibre and fully FSC certified. Produced using 100% recycled waste at a mill that has been awarded the ISO14001 certificate for environmental management. The pulp is bleached with a totally chlorine free (TCF) process. The Lavenham Press holds the FSC Chain of Custody certificate. SAUK has been accredited with The Information Standard. Backbone is outside the scope of this accreditation; however, medical articles are peer reviewed by a medical expert and will carry the Information Standard logo. Please contact us for more information on our accreditation and any sources used in the production of the medical articles. SAUK can accept no responsibility for the accuracy of the notices, letters, or articles in the magazine received from individuals, outside bodies, or organisations, nor does SAUK necessarily endorse such views or material published in Backbone. SAUK reserves the right to edit all letters and other material contained therein. © Scoliosis Association UK, 2019. Registered Charity No: 1181463. Please contact us if you require Backbone in a different format. T: 02089645343

2 BACKBONE | ISSUE 100 LATEST NEWS Farewell Isobel Gray Awards It is with great sadness that we have to Don’t forget to send us your announce we will be saying goodbye nominations for the Isobel Gray to our National Director, Claire Curley. Award and Roll of Honour! Email Claire joined SAUK in 2015 and has run [email protected] for an electronic SAUK alongside our sister charity the version. The Isobel Gray Award British Scoliosis Research Foundation recognises people who have made an (BSRF) for over 4 years. Claire has been extraordinary contribution to SAUK an incredible asset to SAUK, we are very and the Roll of Honour those who sorry to see her go but wish her all the have shown outstanding courage best for the future. while undergoing treatment.

SAUK Raffle 500 Club Marathon and 10K This year’s exciting prizes courtesy of Be in with a chance of winning the The places for 2020’s London William Young Charitable Trust: jackpot. and supporting SAUK. Marathon and ASICS 10K in London will be announced later this month - 1st prize - £750 To buy a number and be entered into keep an on your emails if you sent in 2nd prize - £500 the annual cash draw costs £12 - you an application. Thank you to everyone 3rd prize - £250 can increase your chances by buying who did, we really appreciate you as many numbers as you would like. To wanting to support SAUK. The SAUK Raffle is a vital way for us to find out more or buy your ticket visit: raise money to continue our services www.sauk.org.uk/get-involved/500- as we rely solely on donations. A huge club You write thank you to all our donors and to If you would like to write a letter for everyone who has been selling our publication in Backbone please email tickets over the years. Get in touch [email protected] and If you have had experience with a mention You Write in the subject. The raffle will be drawn in early ScoliSMART Activity Suit please get Although we cannot publish all the December so get your tickets back to in touch, we would love to hear from letters we receive we would be very us in good time - best of luck! you. Email communications@sauk. pleased to hear from you and will do org.uk directly. our best to include your account.

Colour Me Krazy SAUK are delighted to announce we have been chosen as one of the charities supported by Colour Me Krazy. Colour Me Krazy is an exciting race that brings together the challenge of a 5k with a splash of colour. Race founder Matt has chosen SAUK because his mother has scoliosis and she would like to help support the next generation of people diagnosed with the condition. Please visit www.njuko. net/w/77/ for more information or to sign up!

ISSUE 100 | BACKBONE 3 N o n -S u r g i c a l M a n a g e m e n t o f A d u l t D e g e n e r at i v e S c o l i o s i s Sashin Ahuja Consultant Orthopaedic Spinal Surgeon University Hospital Llandough, Cardiff

anagement 3) irregular posture. - Although scoliosis improved control of the spine which would of adult usually causes a sideways bend, patients help with mobility and function. Various degenerate with degenerative scoliosis may also have studies support muscle strengthening scoliosis is loss of sagittal (the anatomical plane which as a useful option to control back pain divides the body in half) spinal alignment symptoms. These above options would in challenging. because they would find that they tend to a way be the mainstay of treatment as they Almost all patients diagnosed with this lean forwards when they stand or walk. This would help the condition and symptoms typeM of scoliosis are usually initially treated loss of spinal alignment can lead to muscle and help maintain function and ongoing non-operatively to help manage their fatigue, which could affect the ability to care. symptoms. walk and mobilise comfortably to carry on with the day-to-day activities and function. Some therapists might use other options Surgery is an option but in some patients it apart from exercises to help the pain such may not be appropriate for various reasons Non-surgical options for as, TENS machines, shockwave therapy, and some patients may select non-surgical management of back pain ultrasound, accupressure, accupuncture options as their treatment of choice. which have mixed evidence for their Surgery in patients over 60 has a high Medication effectiveness but are an option to help with complication rate and unless there is a clear the symptoms and are part of the therapist’s possibility of substantial post-operative Analgesia (pain killers) are the most armamentarium. benefit it is better they be managed common treatment option to help with conservatively. Most patients would be pain which is usually provided by their But on some occasions managing back able to self-manage their symptoms with General Practitioner. There is published pain is difficult despite use of the above lifestyle modification and intermittent use evidence to support the use of analgesia measures and in those scenarios one of of medication to help the pain. to help back pain but prolonged use the options for management would be to of analgesia should be monitored and consider referral for a pain management Some patients may not be able to manage discussed with the doctor to assess the risks. programme via the local pain clinic. The their symptoms by simple measures as various techniques used by the pain team described above. In that case the non- Conservative therapies would usually include the appropriate surgical management would depend on use of medication to help with the pain the type of symptoms patients present Conservative measures - ie, physiotherapy, or injections to help the symptoms. The with. The most common symptoms chiropractic treatment, osteopathy, or injections that could be offered would would be 1) back pain, 2) nerve pain alternative methods which currently are depend on each individual’s symptoms and or nerve related symptoms - ie, pain gathering more support. For instance, potential pain source as per the assessment radiating down the legs like sciatica (pain pilates or yoga are routinely used by by the clinician. The options with regard to caused by irritation or compression of the individuals to help with back pain. There injections for back pain would include the sciatic nerve) or symptoms suggestive are exercise programmes available in following: of neurogenic claudication whereby an some places and the feedback from the 1) Facet joint injections - ie, injection of individual may find that they can walk individuals attending these classes is very steroid into the facet joints, which are the for a certain distance and have to stop favourable. These therapies usually help joints of the spine that lie behind the spinal and sit down to help the symptoms; or the muscles in the back so as to allow cord, and are usually done under local

4 BACKBONE | ISSUE 99 anaesthetic and under X-ray guidance. case-by-case basis a patient could be offered be used to control nerve pain but also to 2) Facet joint denervation - if facet joint a brace that could be used on occassions to help to localise the pain source so that if injections help symptoms for a reasonable help with function and mobility. required the patient could have limited duration then one could consider surgery to decompress the nerve to help undertaking facet joint denervation or Walking aids improve the symptoms. rhizolysis whereby we can ablate (ie, remove) the nerve endings supplying the Some individuals use walking aids that Epidural injection is another option that is facet joint. This procedure could help the help them to be in an upright position used to help with symptoms. It is usually pain arising from the facet joint for a long rather than bending forwards. These aids done under local anesthetic and X-ray time. potentially help with walking and function. guidance and would either be a caudal or They can vary from a walking stick, two a lumbar injection and both go around the The evidence for the use of facet joint sticks, crutches, or the use of other devices, spinal cord rather than a specific nerve root injections and facet joint denervation such as rollator frames. Walking aids are in spinal nerve block. Caudal epidural is in medical publications is variable but usually very useful in managing patients injected just above the level of the tail bone their use for patients with low back pain is with degenerative scoliosis by helping to and the lumbar epidural is injected into the supported by National Institute for Health improve their mobility and function. They lumbar spine, which is roughly at the level & Care Excellence (NICE) as one of the also provide a sense of security and safety of the waist line. The published evidence options to help with symptoms. and help to avoid falls that could have other fairly supportive of spinal nerve blocks or inadvertent consequences. epidural injection. Another option that has benefitted patients with low back pain and could be Non-surgical management of The management options are for the considered to alleviate symptoms is an symptoms related to spinal common mechanical symptoms that intensive rehabilitation programme or nerve pain patients with degenerative scoliosis would functional restoration programme. These present with. One may have to utilise one type of programmes usually include input Some patients with degenerative disease or several of the options to help with the from physiotherapy, pain management, may have nerve-related symptoms symptoms. The decision about the best and psychology. These programmes have because of a trapped nerve causing sciatica options to offer to help with symptoms improved low back pain symptoms. This or difficulty walking any distance. Generally would be based on the clinician’s or treatment option is recommended by NICE such patients prefer to sit after walking therapist’s assessment. for patients with low back pain because a specific distance, which in the medical published evidence is fairly favourable. terms is called neurogenic claudication. Surgery is usually the preferred treatment Non-surgical options for for patients with nerve related symptoms. management of altered posture But such surgery can be challenging, or loss of spinal alignment because if it is done to free the nerve - ie, spinal decompression - it may be Bracing inadequate since the surgeon may have to stabilise either a short segment of the In patients with loss of spinal alignment one spine or a longer segment so as to correct could consider using mechanical measures and realign the scoliosis. Both options have - ie, a brace to support the spine, in addition their inherent risks. But as discussed above, to Conservative treatment. The various surgery may not be an option for everyone spinal braces available range from soft with nerve pain and degenerative scoliosis. corset, which is essentially made of canvas type material, a soft corset supplemented As for back pain, analgesia would be with metal strips supporting the back, or a an appropriate first line non-surgical fully moulded jacket made of thermoplastic treatment. Some of the additional which is usually moulded to fit around the drugs usually prescribed by doctors are trunk. gabapentine, pregabalin, or amitriptyline to help with nerve-related symptoms. These braces can help to support the spine and improve spinal alignment, which could If the pain is persistent despite medication potentially help mobility and function in a spinal nerve block can be tried, which Sources are available from SAUK on request. This article is an Information a similar fashion to a knee brace or braces is done under local anaesthetic and with Standard medical article. There is more used for other joints in the body. Again the X-ray guidance. Local anaesthetic steroid information about the Information published evidence for use of bracing is is injected around the specific nerve root Standard on our website, at www. varied and this method is not commonly to help and control the nerve-related sauk.org.uk/about-us/the-information- uses in day-to-day practice, although on a symptoms. This procedure could not only standard.

ISSUE 100 | BACKBONE 5 A conversation with... va EBUTTERLY Eva Butterly grew up in Rush, County Dublin, before going on Above: Eva Butterly, to study Drama and Performance at the Conservatory of Music photo credit and Drama in Dublin city. She has worked in theatre and film/ to Stephen television, appearing in Pixies, The Smoker, and The Dame Black Who Wore Red shoes, but most notably as Margaery Tyrell photography Right: Eva Mummer in Game of Thrones. Her main passion though is (left) as exercise. Eva runs her own personal training studio in Rush Margaery where she specialises in training people with scoliosis. Eva is Tyrell Mummer. also the host of The Scoliosis Warrior podcast where she speaks Image with people on different topics surrounding the condition and source: is a strong advocate of body positivity and scoliosis awareness. IMDb.com.

SAUK: Can you tell me about being diagnosed with scoliosis. What is your experience of living with it? What has helped you deal with it?

EB: When I was 12 my teacher noticed that my shoulder was slumped to one side. She informed my mam, who took me lifting, I developed a new-found confidence in myself, which to see a chiropractor, where I was diagnosed with scoliosis. I was very empowering to a previously self-conscious teenage received chiropractic treatment for 6 months, but my back got girl. So I continued to train 4-5 days a week and over the course progressively worse. I was sent to see an orthopaedic surgeon, of a few months my body started to change. I became a lot who advised me that I required immediate surgery because more symmetrical, and my pain pretty much disappeared. my curvature was so aggressive. I had two spinal fusion operations - the first to insert metal rods either side of my I believe there is a misconception when you have chronic pain spine to prevent my curvature from getting worse, the second or scoliosis that lifting weights will further exacerbate the pain. to remove the rods, because the hardware became infected. I This makes you fear exercising, which further adds to your pain wore a body cast for a year after that to secure my spine, and - it is a vicious cycle! However, many studies show lifting weights thankfully there have been no further complications since. not only relieves back pain and improves the functionality of the spine, but it also increases your bone density. Strong Growing up with scoliosis was hard, my body felt very alien muscles have a much easier time holding the spine in place, to me and I had trouble finding clothes to fit. The backs and strong bones help to prevent degeneration of the spine of chairs in schools always caused a lot of discomfort, and as we get older. Another amazing side-effect of lifting weights I felt very different from other girls my age. I would say is the mental strength developed through the practice. hands down the biggest thing that has helped manage my scoliosis has been weightlifting. Strengthening the muscles So my mission is to empower people to take control of that surround my spine has helped tremendously with their health through resistance training. I also advocate pain and also the overall aesthetic appearance of my back. for the importance of well-balanced nutrition and mental health. I want people to know that they don’t have to SAUK: You’ve become a role model for people with scoliosis be a slave to their scoliosis, and there are lots of things and have been on various platforms describing how weight- they can do to help themselves manage the condition. lifting has really helped you. Can you tell me about that about that and your personal trainer mission. SAUK: What message would you have for anyone who has been diagnosed with scoliosis? EB: I started going to the gym at 18. My brother was really passionate about weight training, and he taught me all the EB: Go online and get yourself some support. Thankfully basic compound lifts such as deadlift, squat, and overhead we are living in an age where there are so many shoulder press. Because of the way my body was shaped resources available for those with scoliosis. Don’t be (long legs, long arms, short torso) I was well suited to lifting afraid to reach out, be curious about your condition, ask weights (particularly deadlifts), and I really enjoyed the feeling questions about the best treatment options available. of strength that came with this new practice. For so many Scoliosis is not only physically difficult but it is also a struggle years I didn’t feel in control of my body, I felt like there was mentally, and it is easy to feel very alone on the journey. an outside force governing everything I did. Through weight Reaching out to other people can help lessen the load.

6 BACKBONE | ISSUE 100 About the BSRF

SAUK has a sister organisation, the British Scoliosis Research Foundation (BSRF). The BSRF exists to promote research into the treatment of scoliosis in the UK. Each year the BSRF funds research into scoliosis, and it holds an international symposium every 2 years to spread knowledge gained from research. Although treatment exists, there is currently no cure for scoliosis and in most cases the cause remains unknown. Each year, the BSRF provides funding, subject to a formal application and review process, for those doing high quality research into all aspects of scoliosis. BSRF funded research has provided better understanding of both the causes and treatments of scoliosis, resulting in earlier intervention and better treatment for patients. Currently we are funding grants to people engaged in research into scoliosis.

Current research International Phillip Zorab Symposium

Edge Hill University recieved funding to improve On the 20th and 21st June, 2019, the BSRF hosted its 16th young people’s engagement during planned spinal International Phillip Zorab Symposium in Dublin, Ireland. consultations for adolescent idiopathic scoliosis. BSRF welcomed experts in scoliosis to share and discuss The result was a fantastic animation called What to their research. Highlights included talks and debates from Brian Ciruna, James Sanders, Greg Reading, Amer Expect which talks patients through the diagnosis Samdani, and Emma Clark. The event was a huge success. and treatment process for scoliosis. It can be viewed on our Facebook page: www.facebook.com/ BritishScoliosisResearchFoundation. Travel Grant

The BSRF also gave funding to the University of Bristol The Charles Manning Award provides small grants to to look into the natural history of scoliosis from aged 13- healthcare professionals with an interest in scoliosis, 24 using a population based approach. The Bristol study as a contribution towards travel costs incurred when was building on the ALSPAC (a cohort study of children visiting relevant institutions. Contributions towards born in Avon between 1991 and 1992) to see if scoliosis the cost of attending conferences or meetings directly related to your field of expertise may be could be identified before it fully developed and if considered. To find out more visit www.bsrf.co.uk/ predictions could be made about the curve progressing. research-grants/the-charles-manning-award

ISSUE 100 | BACKBONE 7 coliosis and breathing S Prof Anita Simonds Professor of Respiratory & Sleep Medicine, Royal Brompton & Harefield NHS Foundation Trust

isorders of the likely to progress than adolescent- to the spine if these conditions skeleton affecting onset curves, and can be associated occur in childhood or adolescence, the spine and rib with spinal cord conditions such as before spinal growth is complete. cage fall broadly syringomyelia and Arnold Chiari syndrome. into the categories How can scoliosis affect of scoliosis (lateral curvature of spine), Infantile scoliosis occurs after birth but breathing? Dkyphosis (backwards curvature), lordosis before the age of 4 years and is quite rare, (forward curvature), and pectus (breast with an incidence of 4% of scoliosis cases. The major effect of skeletal chest wall and bone) abnormalities. The degree of lateral By contrast with adolescent-onset and neuromuscular disorders on pulmonary curvature in scoliosis is expressed by the juvenile-onset scoliosis, it is more common function is to cause a restriction in lung Cobb angle, and is calculated from a in boys, and the curve is more likely to be size, which is called a restrictive ventilatory standing X-ray as shown in Figure 1. There to the left side of the chest, than right. defect. Any significant scoliosis or kyphosis must also be a rotatory element. results in a loss of height, so that arm These early-onset curves, in particular, may span instead of height is required to The existing classification of scoliosis is also be linked with pulmonary hypoplasia predict normal lung volumes. In general, via causation: congenital (seen at birth), (under-developed lung) and thoracic individuals who have a thoracic Cobb neuropathic (caused by neurological cage abnormalities, increasing the risk of angle greater than 70° are subject to or neuromuscular problems such as long-term lung and heart complications. clinically significant lung size limitation. In muscular dystrophies or poliomyelitis), Congenital scoliosis often occurs as a result children with early-onset scoliosis, serious and syndromic (associated with other of failure of normal vertebral development conditions, -eg, Marfan and Klippel during the fourth to sixth week of Feil syndrome). Each has particular pregnancy. It is associated with congenital consequences for breathing. However, cardiac defects in about 10% of cases. by far the most common subtype is idiopathic scoliosis (75%), and most For scoliosis, such curves are related to of such curves develop in adolescence. underlying neurological or neuromuscular Idiopathic means the cause is not known. conditions such as cerebral palsy, muscular dystrophies, and spinal muscular atrophy. Adolescent idiopathic scoliosis (AIS) is curves, in contrast to idiopathic curves, can be diagnosed between the ages of 10 and more rapidly progressive and may advance 18 years. In total there is an incidence after maturity. Furthermore, pulmonary of 3% for curves between 10° and 20° function will be related to chest wall and 0.3% incidence for curves greater restriction but additionally by underlying than 30°. The female to male ratio of respiratory muscle weakness if present.. curves greater than 30° exceeds 10:1. Acquired structural scoliosis may occur Figure 1: Spine showing measurement Juvenile idiopathic scoliosis occurs in as a result of thoracic surgery, traumatic of Cobb angle from intersection of children aged 4 - 10 years and accounts onset spinal cord paralysis, a tumour horizontal lines drawn at top and for 15% of scoliosis cases. It is more affecting the thoracic spine, or radiotherapy lower vertebrae of curvature.

8 BACKBONE | ISSUE 100 ventilatory limitation is unlikely if the curve impairment and the extent of curvature simple analogy is blowing up a balloon – is less than 30°. Lumbar or even low thoracic is complex and cannot be predicted expanding it initially is much harder than curves are unlikely to impair pulmonary accurately from the Cobb angle alone. The increasing its volume once it has grown to function because they do not restrict the four underlying major determinants of a the size of say, an orange. The lung consists lungs. reduced FVC are the number of vertebrae of small air sacs (alveoli), and changes in involved in the curve, the higher the position pulmonary characteristics largely arise from The simplest breathing tests measure the of the curve, the Cobb angle, and the an alteration in alveolar forces caused by total volume of air breathed out in one degree of loss of normal thoracic kyphosis. chronic breathing at low lung volumes. In second (forced expiratory volume, FEV1) In paralytic scoliosis, lung volumes are neuromuscular patients, collapse of some and the total volume breathed out after a reduced not only by chest wall restriction, of the alveoli or larger lobes of the lung may maximum breath in (forced vital capacity, but also by inspiratory muscle weakness. complicate the picture as the respiratory FVC) – see Figure 2. muscles fail to expand all areas of lung. Gas transfer or diffusing coefficient However, in early-onset scoliosis, failure of While both scoliosis and kyphosis (KCO) is a measure of the ability of lung development (pulmonary hypoplasia) diminish lung volumes, a lateral (sideways) the lungs to transfer oxygen into the and undergrowth of the pulmonary vascular curvature has a more profound effect on blood stream. This tends to be raised in bed may occur. Diaphragm weakness chest wall functioning. Restriction implies scoliotic patients, because extra-thoracic and loss of lung stretchability may inhibit that both FEV1 and FVC are reduced in compression squeezes more air than alveolar development in fetal and early life, proportion, so the FEV1/FVC ratio remains blood out of the lungs, thereby decreasing causing further loss in lung volume and gas normal. This distinguishes scoliosis from accessible alveolar volume. Importantly transfer ability. Recurrent pneumonia may conditions such as asthma and chronic a low KCO value is suggestive of problems occur in neuromuscular patients who have obstructive pulmonary disease where FEV1 such as pulmonary hypertension (high weakness of the swallowing muscles, or is disproportionately reduced compared to pressure) in the pulmonary circulation an ineffectual cough. Pulmonary scarring FVC. A significant obstructive ventilatory or intrapulmonary disease, so should be is also seen in patients who have old defect is rare in adults with scoliosis investigated further. tuberculosis, and these individuals may and kyphosis, unless the individual has have areas of lung damage that can lead to coexistent asthma, chronic obstructive With respect to chest wall mechanics frequent infections (bronchiectasis). Cystic pulmonary disease, or upper airway seems like an odd word to use when lung changes affect some individuals with obstruction. However, in some patients applied to breathing but is a physiological neurofibromatosis or Marfan syndrome. with scoliosis and lordosis, bronchial term describing how difficult it is to expand torsion (twisting) or bronchial compression the chest and take breaths. Compliance During sleep we rest our muscles, including by adjacent vertebrae can occur. This is indicates how stretchy the chest wall is, most of our breathing muscles, instead an important catch that measuring lung and scoliosis can make it stiffer. Chest wall relying on our diaphragm. In addition, volumes can help us identify. If bronchial compliance is an important determinant our drive to breathe from the brain is compression or torsion is suspected a of lung volumes and the work of breathing. reduced, especially during rapid eye computerised tomography (CT) scan of the Individuals with a Cobb angle of less than movement (REM) sleep, resulting in more chest can be done to help to confirm this. 50° experience a minimal reduction in chest gentle breathing at night, but in people wall compliance, whereas compliance is with moderate and severe scoliosis this The relationship between breathing likely to be greatly reduced if the Cobb angle process can be magnified (nocturnal is great than 100°. A direct relationship hypoventilation). between Cobb angle and compliance is not seen in patients who have neuromuscular In individuals with respiratory muscle disorders, since respiratory muscle weakness and chest wall restriction, weakness contributes independently to nocturnal hypoventilation in REM sleep is chest wall stiffness. Alteration in chest wall seen when FVC falls below 60% predicted properties cannot solely be attributed to and tends to extend to non-REM sleep - the mechanical condition of scoliosis, as a ie, the whole night when vital capacity is decrease in compliance has been recorded less than 40%. In a study of patients with in patients affected by chronic respiratory nocturnal hypoventilation as a result of muscle weakness in the absence of mixed respiratory muscle and chest wall scoliosis. disorders, 70% progressed to daytime ventilatory failure within 12 months and Although lung expansion is compromised 90% within 2 years of the first appearance by chest wall properties, primary lung of symptomatic nocturnal hypoventilation. pathology is unusual in adult patients Nocturnal hypoventilation is therefore who have idiopathic scoliosis. However, an indication to start breathing support Figure 2: Measurement of FEV1 and lung compliance is reduced because small at night with nocturnal non-invasive FVC using handheld spirometer lungs are more difficult to expand. A ventilation. because treatments such as non-invasive oxygen level drops and carbon dioxide How can you measure ventilation are highly effective. Factors to (waste gas) level rises. This can be treated breathing? look at to predict those at risk are, firstly, with a small breathing machine at night. age at onset of the scoliosis. In patients Usually this treatment is needed for those Lung volumes should be measured as who developed cardiorespiratory problems with muscle or syndromic conditions, or shown in Figure 2, or in a pulmonary function attributable to their scoliosis, 90% had early onset scoliosis. It is most unlikely to lab. Arterial blood gas measurement (O2 an early-onset curvature. A vital capacity be needed in people with adolescent onset and CO2 level measured in an arterial blood of 50% predicted is an important cut- scoliosis. Recently we have been able to sample), and assessment of respiratory off figure, since those with a value less help many children and young people muscle strength with mouth pressures are than 50% predicted at presentation are with scoliosis and neuromuscular disorders helpful, particularly in the group who has much more likely to develop respiratory such as Duchenne muscular dystrophy neuromuscular disease. Mouth pressures decompensation than those who have and spinal muscular atrophy. Many now are measured by a simple inspiratory and larger lung volumes. In an historic untreated grow to adulthood, which was not possible expiratory test. Cough effectiveness can also cohort with idiopathic scoliosis followed before the development of non-invasive be measured by blowing into a mouthpiece for 20 years, respiratory failure occurred in ventilation. device. 25%, all of whom had a vital capacity less than 45% predicted and a thoracic Cobb How can I keep healthy? A fall in FVC greater than 15% predicted on angle greater than 110°. lying in the supine position (flat on your Mostly this is common sense. Importantly back) indicates significant diaphragm What can be done to help don’t smoke, exercise regularly and keep weakness. A high daytime CO2 level is breathing? to ideal body weight. Even putting on associated with an inspiratory mouth a little weight can make people with pressure less than 30% predicted. As well For people with scoliosis and breathlessness scoliosis breathless. Influenza vaccination as inquiries about daytime breathlessness as a result of chest wall restriction the first is recommended in those over 65 years, or if and exercise tolerance, individuals should step is to see your GP who can measure you have an additional breathing problem be asked about symptoms of nocturnal your breathing or refer you to a respiratory such as asthma. If possible, keep an eye on hypoventilation (morning headache, poor medicine department to be assessed in your vitamin D level and take supplements sleep quality, frequent wakening from sleep, more detail. if this is low. Many people are vitamin D nocturnal breathlessness), and if any are deficient so it could be argued that all present, the individual should be referred If there is a significant restrictive ventilatory scoliosis patients should take vitamin D for monitoring of respiration during sleep defect and breathlessness is problematic, supplements. A bone densitometry scan - a sleep study carried out by Respiratory a pulmonary rehabilitation course can is helpful in showing if individuals have Medicine or Sleep Hospital departments. be helpful. This course consists of an osteoporosis, which can be treated with Simple overnight measurement of oxygen exercise programme tailored to personal bisphosphonate tablets +/- calcium, as level (oximetry) can be done at home with a needs, coupled with advice on breathing advised by your GP. Upper respiratory clip on the finger or ear. More detailed tests control and healthy living. There is good tract infections are usually viral and settle involving assessment of carbon dioxide evidence that pulmonary rehabilitation, with symptomatic measures such as level and respiratory pattern can be done in particularly the exercise component, paracetamol and rest. If symptoms don’t hospital overnight. reduces breathlessness and enables the settle within a few days and are associated individual to walk further. The specific with production of green or yellow phlegm Who is at risk of breathing programme will take into account the and increased breathlessness, then a check- problems? scoliosis, and problems with any pain or up with your GP is advisable as an antibiotic truncal (torso) asymmetry. It is crucial to might be required. The good news is that almost all individuals continue the exercise after the course ends, who have a thoracic spinal curvature will otherwise the benefits are lost. Your GP not develop cardiorespiratory problems as or respiratory physician can refer you to a most have small curves, that are more likely pulmonary rehabilitation course either to be adolescent in onset, and therefore do in the community or at a local hospital. not require long-term respiratory follow- Courses usually last around 6-8 weeks, with up. twice weekly attendance. But clearly, it is important to be able to identify the small number at risk of If the vital capacity is less than 50% problems so that appropriate monitoring predicted and/or there are symptoms of and timely therapeutic intervention are Sources are available from SAUK on sleep disturbance such as waking with request. This article is an Information done. Decades ago heart and lung failure breathlessness or morning headaches, a Standard medical article. There is more were the primary cause of death in patients sleep study may be done. In those with information about the Information with severe idiopathic thoracic scoliosis. very small lungs this may show nocturnal Standard on our website, at www. Such an outcome is now hardly ever seen hypoventilation during sleep. Here the sauk.org.uk/about-us/the-information- standard. 10 BACKBONE | ISSUE 100 DAVID RINTOUL

Photographed by Lord Patrick Lichfield for SAUK’s Getting It Straight Campaign, 2002

ilee Harrison kindly invited me to be looking metal throne. The Throne. Anyway, terms were negotiated, I was Aa patron of the Scoliosis Association The Throne in The Game of Thrones. whisked off to North London in an UK when I was playing ITV’s Doctor Finlay automobile of spectacular specification, some 25 years ago. We made four series, it It happened like this… fitted with a fetching white wig and given was popular both here and in the USA and, a fearsome non-disclosure agreement personally, led to a fair amount of public My agent asked me to go up for an to sign. It was when I dropped a few recognition - people saying hello to you in un-named part in the series, the only indiscreet hints to my niece, a great shops, appearing on chat shows - that sort description being that he should ‘have fan of the series, and she guessed that of thing. Unless you’re very well established authority and be stark raving mad’. I ‘You’re playing Him?’ that I realised that side of an actor’s life tends to come turned up to join a roomful of people the magnitude of what I’d agreed to. and go, Dame Fortune’s a Fickle Jade. who I flattered myself were much more suitable candidates than I was. I was I was flown out to Belfast and spent an A couple of years ago I was playing the given a short script and ranted a bit into agreeable day shouting my silly head Ghost and the Player King in Andrew the camera. A few days later my agent off in the old Harland and Wolff’s paint Scott’s Hamlet at the Almeida Theatre rang and said that I had got the part. shop which is now the permanent and in the West End. Andrew, of course, ‘It’s just a day’s filming, David’. Oh. ‘Just set for the Game of Thrones’ Throne played Moriarty in BBC One’s Sherlock a few lines’ Oh. ‘But it’s to play The Mad Room. I called Joanna, my niece, as I and he was met with a great queue King’ Who? (I hadn’t seen the series). was sitting on the iconic Throne. She was of admirers after each show after an impressed. So that was that; a day’s work. autograph, or these days more commonly For those of you who are in the same selfie, hunters all of whom he very boat let me fill you in. Familiar from I’ve just finished 7 months filming the generously obliged. I slipped out of the advertisements for the series is a very pretty, third series of ‘The Crown’. Because stage door confident that I would get very blonde young woman, the heroine, I’ve signed another fearsome non- home a good half hour before he did but Daenerys Targaryen. I’m her Dad. Another disclosure agreement I can’t tell you was often met with a sub-queue of my hugely well known (to the aficionados) anything more. I can say, however, that own. The photograph that I was asked character is Jaime Lannister, otherwise I spend a lot of screen time with the to sign bore only a passing resemblance ‘The King Slayer’. I am the King he slew and delightful Olivia Coleman. Meanwhile, to my everyday self - a wild-eyed lunatic the slaying was very briefly re-imagined by at the time of writing, I’m back on stage in a white wig, sitting on a dangerous- the backward-seer Bran Stark. Got all that? playing a Leningrad sewage worker.

ISSUE 100 | BACKBONE 11 huge thank you to all of our amazing supporterson for ationPaul Minter, Andy Minter,s Cristian Mircea, SAUKyour generous donations. We greatlyD appreciate all Mihaela Mircea, Alyson Mitchell, Lee Moore, Jenny Morning, Calvin Morrice, the donations we receive and you are vital in ensuring Roger Morris, Jackie Moss, Darren A Moss, Briony Moss, Stewart Moulton, we can continue our important work, providing support and Alison Mower, Robert Moyney, Sophie information for people with scoliosis. Moylan, Erica Moylan, Ian Mullin, Vicky Mullins, Clare Munden, Ellie Murphy, Cathy Acaster, Adetomike Adeniji, Jane Faber, Sarah Facer, Sally Farmer, Iain Nikki Murphy, MA Murphy, M Murphy, Jeanette Akunebuni, Jennifer Airlie, Ami Farquhar, Chloe Farquhar, Jordan Firth, Roisin Murphy, Caroline Nicholas, Simon Andrews, Tita Ann, Michael Antoniou, Agnieszka Fisher, Alina Fisher, David Niebuhr, Amy Noble, John Noble, Mariusz APS Legal and Associates, Kath Arina, Flanagan, Dave Forbes, Emma Forbes- Nowak, Michael O’brien, Alison O’neil, Jess Alex Ascham, Fazeela Ashraf, Matthew Laird, Margaret France, Lola-Rose Freer, O’shea, Tina Owens, Helen Page, Lorraine Atkinson, Val Aviv, Frances Ayrton, Clare Freer, Nick French, Jacquie Galloway, Parrott, Zara Parkes, Emanuelle Paulson, Julia Aziz, Debbie Balaam, Chris Banks, Andrew Gascoyne-Cecil, Nicole Gillen, Debbie-Anne Paxton, Corren Perks, Lydia Weronika Baranowska, Sarah Barnes, Rosie Gilks, Gary Good, Scott Goodall, Perry, Peter Phillips, Karen Pickard, Lavva Soph Baxendale, Gillian Beaton, Michelle Shirley Goodgroves, Mica Gooding, Playmobilette, Aimee Poole, Derek Porter, Beesley, Sam Belk, Vron Bell, Paul Bell, Sarah Goodsell, Chris Graham, Claire Margaret Porter, Harley Potter, Debbie Caroline Bell, Jack Bellamy, Richard Graham, Liz Graham, Margaret Grahame, Potter, Sue Preston, Joe Puckrin, Hana Belson, Matthew Bevin, Lorna Bennett, Charlotte Green, Erica Greene, Emilia Purslow, Lorna Raper, Sandra Reason, Mary Birch, Ian Birdsey, Avril Bishop, Greenfield, Hannah Grennall, Debbie Katie Redgell, Karen Reding, Nikki Reeves, Lorraine Black, Michelle Blackman, Groom, Menald Gumallaoi, Tiggy Gurney, Douglas Rew, Julie Richards, J Anne Rillon, Sophie Bostridge, Martin Bourne, Andrea Tess Gurney, Michi Hacken, Angharad Tom Roberts, Carolyn Roberts, Allen Bowers, Kate Bown, Donald Boyd, Stuart Haddock, Monika Hall, Carol Hambly, Roebuck, Jade Rose, Kerry Rosier, Claire Boyes, Victoria Bragg, Claire Brennan, Alex Harding, Steve Harper, Sallyanne Rowan, Abbie RS, Sharon Sams, Tara Laetitia Bridge, John Bridgewater, Janice Harris, Harrison, Nicola Harrison, Helen Satyanand, Peter Saunders, Jacky Scarlett, Brisband, Ngaire Broadbelt, Craig Brown, Haseltine, Lindsay Hastings, Ann Healy, David Scranage, Daniel Sclare, Kim Shaw, Michael Brown, Dawn Bryan, Louise Dawn Heath, Alan Heeks, Charlotte Dan Shelton, Andrea Shippey, Alison Buckle, Terri Buffery, Josh Bull, Helen Heeks, Alisha Hellard-Smith, Sharon Shorten, Luke Sifleet, Tracy Simmonds, Butcher, Marissa Cacayan, Charlie Calcutt, Herron, Victoria Hiley, Elissa Hill, Rebecca Yvonne Simmonds, Caroline Simpson, Ian Christine Calladine, Debbie Calland, Hill, Jon Holloway, Waltraud Holzer, Simpson, Sandy Simpson, Simmo Simpson, Mollie Campbell, Katie Campbell, Gordon Bernice Hopper, Angela Horler, Phil Rhona Sinclair, Georgina Smith, Adam Cargill, Kezia Cargill, Caitlin Cargill, Laura Hurley, Emily Hurley, Margaret Hurley, Smith, Colin Smith, Mel Smith, Nikki Carlin, Ali Chambers, Anna Chapman, Frances Hutchison, Kayleigh Irvine, Liana Spence, William Stark, Julie Stead, Slade Lisa Charman, Chelsie Charvill, Neil Isadora, Marina Jakovleva, Barbara Stevens, Linda Stewart, Peter Stewart, Ian Chittick, Harry Chinn, Ellis Chiverton, Ian Jane, Emma Jane, Wendy Jarret, Helen Stickland, Alex Stickland, Chrissy Stone, Churchward, Lynn Clafton, Tracey Clare, Jenkin, Vicky Johns, Sarah Johnson, Flora Katie Story, Claudia and Paul Stroomer, Sarah Clarke, Alan Clarke, Emma Clarke, Johnston, Stuart Johnston, Sarah Jones, Tracey Summers, Martin Symons, Paul Clyde, Kim Cocks, June Cole, Sophie Hannah Jordan, Nat Joyce, Beverley Suzanne Symonds, Suzanne Symonds, Ella Cole, Anthony Colgrave, Marie Conlon, Kane, Aidan Keelaghan, Keith Keen, Jo Symonds, Michel Taddei, Caitlin Tawse, Stella Cook, Rachel Cooley, Anna Corbett, Keenan, Lily-Beth Kelley, John Kelly, Roger Eben Taylor, Petter Thams, Eliza Thom, Nicky Cordiner, Nicky Cornish, Nina Kerrison, Stanley Kiki, Jane King, Ethan Sarah Thompson, Tori Thompson, Kelly Corrin, Julie Costello, Joan Cottington, Jade King, Joanne King, Allan Kissack, Andrew Timson, Phil Timson, Paul Titman, Rick Cotton, Andy Cotton, Ruby Courtenay- Knapp, Helen Knight, Jennifer Lack, Wendy Todd, Louise Toms, Danella Tracey, Lynn Flack, Gilly Cox, Mike Llywelyn Cox, Alex Lakin, Stefan Lander, Jennifer Langridge, Travis, Michaela Tucker, S Tumath, Joanne Cozens, Mackenzie Crompton, Peter Cross, Samantha Langston, Charlie Laryea, Tunney, Leanne Van Niekerk, Jennifer Kevin Cruickshank, Thomas Cumberland, Henry Latham, Dawn Laville, Marie Le Vanstone, Nikki Von Glehn, Nigel Walker, Dale Cunningham, Molly Cunningham, Novere, Sue Ledwidge, Andrew Lee, Henry Adi Walwyn, Richard Wand, Hellen Daniel Currall, Lizzie Cutts, Alan Dagnall, Lee, Katy Lee, Saskia Lee, Laila Leisibach, Ward, Neil Warren, Jez Warrener, Mike Angela Dale, Brian Dallison, D’almeida, Hannah Lerwill, Martin Liebeck, Liz Warriner, Anna Waterhouse, Mr & Mrs Georgia Danziger, Howard Davies, Paul Lieven, Ddiane Llocherty, Albert Lorenzo, Watson, Pam West, Kath Wharton, Lisa Davies, Pam Davies, Claire Davies, Cathy Rebecca Loudon, Victor Lourenco, Kirsty White, Paul White, Edwina White, Dawn Davis, Nick Day, Heidi de Schouwer, Low, Kay Manzoor, Victoria Margeson, Whitear, Lauren Wilkie, Helen Wilkins, Fiona Dearden, Simon Dennis, Lisa Steven Marshall, Karen Marshall, Elliott Marion Willatt, Barbara Williams, Dennis, Cheryl Denny, Annette Dolman, Marter, Jason Martin, Karen Martin, Elizabeth Williams, Fiona Williams, Lisa Matthew Drapper, Jim Driebeek, Lorne Yvonne Matthews, Patryk Matuszewski, Williams, Sam Williams, Taylor Williams, Dryer, Janet Dufton, Nicola Dugard, Gerry McCann, Sarah McCann, Steven Kate Willis, Claire Wilson, Helena Wilson, Evan Dunn, John Dunnet, David Dyer, McCracken, Rebecca McComiskey, Kirsty Tracey Wilson, Fifi Wise, Janet Wise, Faith Stewart Eaton, Michelle Edser, Siacn McDonald, Medbh Mcgowan, Robert Withington, Charl Wllams, Natalie Wong, Elisabeth, Sarah Elizabeth, James Ellis, Mcintyre, Graham McKay, Stewart McKay, Alan Wright, Graeme Wright, Kathryn Ellen Ellis, Joanne Ellis, Alison Ellwood, Lizzy McKean, Fiona Mclaughlin, Vicki Wright, Lindsay Wright, Maureen Wright, Uchechi Eluwa, Christina Evans, Harry Mclellan, Ruth Meredith, Joyce Miller, Mingxi Zhang, Sophie Zinonos Bruce Evans, Bethy Faber, Steve Faber, Sarah Flora Miller, Angela Mills, Naomi Milner,

12 BACKBONE | ISSUE 100 huge thank you to all our amazing fundraisersun for dyour raisers SAUKfantastic efforts to support - us. PeopleF have run, swum, A cycled, walked, baked, and danced in the name of SAUK. There have been talks, book sales, and a night at the opera. We are so grateful for all your hard work over the past few months; we really couldn’t continue our work without you.

Grev Kartz completed the Carol & Kim Gordon walked from £200 Birmingham Velo 100 mile bike ride London to Brighton and raised £505 Mr & Mrs Dunsheath raised £770 by and raised £901.25 Waitrose and Partners Westfield requesting donations in lieu of gifts at Nicola Carlin-Lander ran the Derby organised a collection and raised £400 their recent wedding Half Marathan and raised £371.25 Ann Liebeck completed the ASICS Nottingham University Academy Lauren Murphy completed the Great 10K and raised £53.25 of Science & Technology 6th North Run and raised £412.50 Janice Olsen hosted an ISAD cake Formers raised £95.30 with a Jill Tindale completed a sponsored sale and raised £303 fundraising event walk raising £1565 Foys Solicitors and Toni Cheetham Mrs Northedge raised £140 by selling Monica & Lucy Duffy completed the raised £500 her crocheted butterfly keyrings Kilt Walk and raised £1100 Diana Scott organised a Fundraising Stephanie Stanley sent £40 from Liz Graham tackled the Peak District Raffle & Art Exhibition that raised the annual Brighstone Christmas Tree Challenge and raised £538.75 £262 Festival in aid of SAUK Gemma Porter completed the Run Marie Steel raised £316.25 Doreen Lindgaard donated her Disneyland Paris 2019 and raised Joe Ward completed the 2018 £30 fee for a talk she have about her £836.25 Prudential Ride, London-Surrey and late brother Colin Pillinger (Beagle Kimberley & Nigel Scarle organised raised £43.75 2 Mission 2 Mars) as well as a further a go-karting day and raised £800 Alison Barnes raised £125 £100 for a talk at Rotary Club, Bristol Lee Henry ran the Bath Marathon and Mike Warriner ran the London Alex Marchant sent SAUK £150, raised £316.25 Marathon and raised £942 from Amazon royalties pertaining to Martin Symonds completed his Gaby Welch completed the 2018 Grant Me the Carving Of My Name, an Coast to Coast 10th Anniversary Ride Simply Health Great South Run and anthology of Ricardian short fiction. 2019 and raised £484.58 raised £790 SAUK received £19 from the christening Abbie Hill raised £205 with her Fillongley Young Farms Club raised collection of Darcy Grace Borkett fundraising activities £150 with a fundraising event Blagdon Estate held a coffee Gemma Beer hosted an ISAD cake Mrs Schofield held a fundraising morning and raised £80 for SAUK sale and raised £50 collection at her yoga class raising

In memory of... £225.80 was received in memory of Facebook birthday fundraisers Our thoughts are with those who Leo Burke £231 was received in memory of have lost loved ones and we are so Georgia Alison, Clare Johanna Ansell, Claire Hodgkinson Liam Aston, Lily Bermingham, Ava- grateful they chose to donate to £680 was received in memory of Maria Birch, Eleanor Bloomfield, SAUK in their memory. SAUK member Christine McCoy Lucy Burton, Donna Campbell, Olivia £300 was received in memory of Cargill, Stephanie Clark, Hannah £232.72 was received in memory of Betty Barr Clements, Shannon Cordiner, Lee- Stephen Albert Allen £105 was received in memory of Joan Gemma Crockford, Neil Dallison, £212.75 was received in memory of Beechey Paula Desseaux, Rawden Enever, Peter Francis Roberts Further cheques were received in Megan Fisher, Nikita Gilkes, Natalie £152 was received in memory of memory of Joan Paine, bringing the Good, Alicia Hamilton, Frances total to £215 Head, Julie Hughes, Nina Marie Pauline Mary Fielden Ibbotson, Austin Ikponmwosa, Kaiya Kaltio, Madeleine Kerrison, Soninha Lourenco, Monica Lumsden, Samara Mezher, Denise Minter, Elle Morgan, Legacies Aaron Moss, Samantha Owers, Mared Emlyn Parry, Angela Rillon, Cathy Patricia Hill left SAUK a very generous legacy earlier in the year Robinson, Bethany Smith, Emma Somerville, Lauren Taylor-Carbis, and we’ve received a further legacy of £14,768.06 bringing the total Sarah Louise Todd, Caroline Toms, to £63,747.65. We are incredibly grateful for being remembered by Shui Tse, Olivia Tunn, Emily Warrener, Patrica. Richard Williams, Lauren Wright

ISSUE 100 | BACKBONE 13 Diana Scott’s SAUK fundraising raffle and art exhibtion

Jill Tindale sponsored walk event

Kimberley & Nigel Scarle organised a go-karting day 14 BACKBONE | ISSUE 100 Martin Symonds during his Coast to Coast Challenge

Monica & Lucy Duffy completing the Kilt Walk

Nicola Carlin-Lander after completing the Derby Half Marathan ISSUE 100 | BACKBONE 15 International Scoliosis Awareness Day

SAUK Photoshoot and lunch

To celebrate ISAD SAUK hosted a photoshoot and lunch in Finsbury, North London. The day was a scorcher, 33°!

A huge thank you to all our amazing volunteers for coming and modelling for us, we really Christine Jaureguiberry - Yoga Challenge appreciated you making the trip to London on a very hot day. Thank you to Patricia and Beatrice for producing the wonderful photos. Christine Jaureguiberry organised two Instagram challenges:

#scolimotions with @yogaberry.scoliosis @backupyogi @korsinina @scoliyogagirl

This was a 7-day challenge focusing on the emotional effect that scoliosis has. We talked about our diagnoses, fears, effects on relationships, and our self-image. Liz Graham - Peak District Challenge #WeYogaForScoliosis with @yogaberry. scoliosis @backupyogi @marypowellyoga Liz completed the Peak District @scoliyogagirl @raunchyyogi Challenge to celebrate ISAD and raised an amazing £538.78 for SAUK. This This was a 10 day yoga challenge where was an ultra event, covering 100 km we had a different yoga pose every day. To of beautiful Peak District countryside enter people posted their version on the over the 2 days. Liz has scoliosis, which Libby Warren- School cake sale pose on Instagram and we did a prize draw is why she wanted to raise money for at the end to win some places on Yoga for the charity. Having tried the distance Libby organised a cake sale at her school Scoliosis courses and memberships. before and not completing because for ISAD. She helped make all the cakes of back pain, she was really pleased herself with help from mummy and to finish this time! Physiotherapy nanny, and was extremely excited to exercises to increase core and glute sell them to her friends. Libby raised a strength have been really helpful in wonderful £55 for SAUK. supporting her to complete this event. Rachel Simpson - Cotswold Way 100km Ultra Challenge

Rachel walked 100km over 2 days in order to raise money for SCF.

Natasha Sutton - Zumba Challenge ISAD weekend also happened to fall on the 20th anniversary of losing her mum Natasha organised a Zumbathon at her to pancreatic cancer. She wanted to do local gym in Telford. This was 2 hours of something special to mark the occasion. uninterrupted dancing like a loony in a Shona Keane- ISAD Fun Day She also did it to show support for her gym with other amazing people - raising a daughter Issy who was diagnosed with fantastic £163 for Scoliosis Campaign Fund Shona organised a Fun Day and raised scoliosis last year. Rachel raised an (SCF). an incredible £ 629.68 for SCF. amazing £780 for SCF.

16 BACKBONE | ISSUE 100 e are grateful to all our amazing fundraisersha for alln yourk you SCFhard work over the past- few monthsT organising various W events and raising an incredible amount of money for SCF. We really couldn’t continue to do what we do without you, so a massive thank you!

Left: Helen Maitland-Evans. Right: Rachel London Marathon Murdock. Centre: Lisa Riding and family. Bottom: Mark Fosker and family We were absolutely blown away by our London Marathon team this year. Donations A huge thank you to our fantastic A huge thank you to our generous team who collectively raised an donors: incredible £15,900.06! Michael Robinson Josh Angus raised £3925.26 Maria Senner Mark Fosker raised £ 2789 David Smith Leon Jones raised £1559 James Greenway Helen Maitland-Evans raised £ 3566.25 Nicki Icke Lisa Riding raised £ 3921.18 Adam Smith raised £ 139.37 In memory of... Clive Newton donated £292.20 in ASICS London 10K memory of his wife Sally. Victoria Feaver donated £62.62 in We had another excellent group of memory of her mother Mrs Susan people running for SCF in the ASICS Pridmore. 10K who raised an amazing £2798.25. Thank you so much for your support. We would like to thank you both for Sophie Moore raised £897.50 your generous donations, we are Rachel Murdock raised £ 333.75 incredibly grateful. Our thoughts Luke Herbert raised £1063.75 are with you and your loved ones Ann Liebek raised £56.25 during this time. Simi Bali raised £ 447 Fundraising Challenge and raised £488 Carl Basker completed the National Three Sue & Jude Widdicombe’s cycle Peaks Challenge and raised £716.75 challenge raised £623.25 Jess Bishop participated in a sponsored Rachel Lafferty completed a 5K North silence and raised £288.75 Coast Beach Run raising £47.50 Lynette Linkson completed the Jurassic Laura Sherlock ran the UK Fast 10k at the Coast Challenge and raised £1048.75 Etihad Stadium raising £596.25 Paige Newman ran a 5K raising £325 Natasha Sutton organised a zumbathon Ellie Newton and her son Alfie took part raising £163 in the Wirral Coastal Walk raising £456.25 Neil Grosse completed Race to the King Coedi Preston completed the Yorkshire (back to back marathons) raising £745 Carl Basker Rob Watson and friends Three Peaks Challenge and raised £285 Rebecca Chaffe organised a cake sale and Chantelle Thompson ran the Bristol 10K raised £364.76 raising £476.25 Anotonio Phillips abseiled down the Robert Watson completed the Hackney Spinnaker Tower and raised £330.51 Half Marathon, raising £1285 Harry Loftis swam the Serpentine raising Amy Wilson ran the Sheffield Half £487 Marathon, raising £355 John Gallagher completed the Rachel Simpson completed the Manchester Marathon and raised £552.93 28Cotswold Way 100km Ultra Challenge Anthony Liot completed Mountain and raised £780 Mayhem and raised £1323.75 Jo Woods completed the Cotswold Way Shona Keane’s ISAD day raised £629.68 Neil Grosse and Mike Chantelle Thompson ISSUE 100 | BACKBONE 17 SAUK yesterday and today

Stephanie Clark, Co-founder and Chair of the Trustees

One day about 38 years ago Ailie older members will recognise these Harrison said to me that one of Dr names! Phillip Zorab’s patients, Isobel Gray, had said to her, ‘You know, what we Ailie set up the SSHG, registered need is a self-help group for people it as a charity, and ran it from her with scoliosis’. That sowed a seed dining room for several years before Ailie Harrison, Co-founder of SAUK that grew into what SAUK is today. moving to an office in the Disabled Ailie asked me to join her and we Living Foundation, London. The approached Phillip Zorab for help. organisation grew quickly and He wrote to 500 of his patients and before we knew it we had about about 200 replied and formed the 3000 members from all over the UK first members of what was then and Eire. At that time scoliosis clinics known as the Scoliosis Self-Help were few and did not offer the kind Group (SSHG). of support we were able to give. Our early Trustees were Ailie, myself, Ailie and I, together with Stuart Isobel Gray, Andrew Minns, and Miss Spencer, now one of SAUK’s Trustees, Min Mehta, FRCS, who used to treat all worked with Phillip Zorab at babies at RNOH Stanmore. Pauline the Cardiothoracic Institute at the Grey and Brenda Sullivan joined us Brompton Hospital in London – to help Ailie as the organisation got hence our interest in scoliosis. I very busy, and it was a great little started my time there working with team. We used to hold regional Dr Yves Cotrel at L’Institut Calot in meetings, much as we do today, and Stephanie Clark, Co-founder of SAUK Berck Plage, France. There were about our newsletter appeared four times a with Isobel Gray 400 children with scoliosis receiving year and was written by Ailie. As we treatment at that institution and expanded our remit and activities they had a hard regimen to follow of we decided to change the name months of intensive physiotherapy to Scoliosis Association (UK). We and treatment with plaster casts also moved to Ivebury Court. There or traction. Once they were fairly Denise Aulsbury joined us and is straight they would have spinal still with us today. She and she and fusion with Harrington rods. The her husband Mick have helped us results were amazing, but the out on many occasions completely patients were in hospital for at least voluntarily. 10 months and saw their families only at weekends. It was tough for SAUK could not have done as much them. Phillip Zorab used to check to help people with scoliosis, their the lung function of patients before families, and their friends without they were operated on by Mr Charles the help of our many volunteers. Dr Phillip Zorab, Scoliosis Specialist Manning at the Royal National Quite early on we recruited members Hospital in Stanmore. Many of our from around the UK who were based

18 BACKBONE | ISSUE 100 in the NHS areas at the time. People as I mentioned before, and our latest Linford Christie, Ailie Harrison, Min Mehta, who wanted to be put in touch with recruit Nicolas Jones is one of Ailie’s Carol & Hannah Richards, and Laura Blows others with similar experiences grandsons and a doctor of medicine. was very busy, to which Ailie replied were, and still are, referred to their ‘nothing at all’! However, he did come local representative who helps One of SAUK’s main aims from up trumps for us in our awareness them by matching their needs with the beginning has been to raise campaign. those of others. Originally called awareness of scoliosis and one of Regional Secretaries, our Regional Ailie’s many projects was to do Our latest project on raising Representatives as they are now just that. About 20 years ago Ailie awareness is a collaboration with known also do a lot of fundraising applied on behalf of SAUK for a the Royal College of General for us and hold meetings for their lottery grant and was successful. Practitioners, conceived and area. Many areas have more than This allowed us to have three parts organised by Nick Jones to one representative and now we hold to the project. The first was a schools incorporate a module about scoliosis training days for them every two teaching pack, which was part of the in the GP training programme. SAUK years. biology syllabus and taught pupils has been very fortunate to receive about scoliosis. It was so successful some large legacies lately and we Our Trustees play a vital part in our that many schools asked for further have been able to fund this venture activities. Anita Simonds is one of Dr packs the following year. The second from those. We have also set up a Zorab’s successors at the Brompton part was a wonderful exhibition of fund from the legacies to help people Hospital. She has written our photographs taken by Patrick, Lord with travel expenses, which can be booklet on pregnancy and scoliosis Lichfield, of people with scoliosis, very high, and purchasing of items and is a world renowned practitioner celebrities, and a scoliosis surgeon. such as equipment, known as the and researcher. Thanos Tsirikos is The exhibition had a marvellous Hill, Pedder, Minns fund. Our present a scoliosis surgeon in Edinburgh, launch in London, which was National Director, Claire Curley has which at present is the only centre attended by many of the celebrities been instrumental in getting these in Scotland that treats scoliosis and Lord Lichfield. It then travelled projects off the ground. patients surgically. Carol Richards to Salford, Edinburgh, Belfast, and is the mother of a daughter with Cardiff. https://www.sauk.org.uk/ SAUK has grown and expanded its scoliosis and a long time Trustee. about-us/our-history The third activities tremendously and I have She designed and entered a scoliosis part was a letter to over 30 000 GPs been able to touch on only a few here. garden to the Chelsea Flower Show telling them about SAUK’s work None of it could have been achieved some years ago to raise awareness and urging them to refer patients without the fantastic support of of the disorder. Linford Christie, who to scoliosis centres for assessment our members and some generous was an active Olympian runner at and treatment. This all took place organisations. SAUK will, I hope that time, opened the garden for us, in 2001-02. We were very fortunate continue to serve its community to which was a great success. Susannah to have Lord Lichfield as Patron at the best of its ability for many years Kraft has scoliosis and a family history that time, until his death. He had his to come. One big thank you from of the disorder. She is marvellous at studios near SAUK’s office and Ailie us all to you all for your wonderful helping out with financial matters walked in one day and asked him efforts and strength in coping with and much needed. Stuart Spencer to be a Patron. His reply was ‘what scoliosis. and myself did research into scoliosis, would I have to do?’, implying he

ISSUE 100 | BACKBONE 19 o p i n g w i t h pa i n C Masood Shafafy Consultant Spinal Surgeon Nottingham University Hospitals

dult degener- year old spine may not show any sign of of nerves or spinal cord, which is not very ative scoliosis degeneration whilst the spine of a 40-year- common. That said, the risks depend on is a common old may be degenerate from top to bottom. the size and type of the curve. The curve in condition, Some environmental factors such as heavy degenerative conditions is often stable and thought to affect about one in 3 adults. In physical jobs and smoking have shown progresses very slowly, if at all. most people the condition affects all three some association with this, disorder but we A Is degenerative disease in planes, ie, sideways (scoliosis), front to back do not have all the answers. adults always painful? (kyphosis) and cross-section (rotational). Does spinal degeneration Occasionally in some degenerative always cause degenerative Degenerative disease could exist for conditions, one vertebra slips forward or disease and if not, why? many years without the patient knowing sideways from the one below. about it and is discovered when the The pattern of degeneration in the spine How does degenerative patient is investigated for other reasons scoliossi arise? is not always symmetrical, similar to the and the curvature of the spine is picked way shoes wear out. It is not completely up. It is, therefore, reasonable to assume understood why but, in some individuals, In most cases, degenerative scoliosis that scoliosis may remain without any discs are worn out before other small joints happens out of the blue with no pre-existing symptoms for many years. What triggers of the back (facets) and sometimes the spinal conditions, in which case it is called the symptoms is not entirely clear. discs are worn out more on one side than de-novo scoliosis. In other circumstances, the other. This pattern may be influenced What do symptomatic patients degeneration (wear and tear) occurs by the way that we are programmed to with degenerative disease in someone who is known to have had walk, carry things, or do tasks. Whatever present with? childhood scoliosis. Conditions can also the reason if several discs of the spine are develop after previous spinal surgery either worn out on one side more than the other The most common complaint is pain at the site of that surgery or above or below side it is natural for the whole spine to lean which in terms of severity could range from it. Whatever the form, the underlying cause to one side. This is an extremely simplistic minor discomfort to severely disabling and is malalignment of the spine. way to look at spinal conditions because in terms of character could take the form of a minor annoying dull ache, to sharp Why does it develop and what other factors such as protective muscular is degeneration? spasms or leaning forward or sideways to stabbing, to burning. Location of the pain relieve nerve compression may make the could be around the area of maximum The process of degeneration is a fact of spine look curved. curvature or in areas or joints where life. Just the same way that skin becomes compensation is taking place to balance wrinkled, hairs become grey, other tissues Is degenerative disease a the body upright. It could also present as of the body including spine will undergo dangerous condition and is it sciatica type pain (pain caused by irritation likely to progress? degeneration. The speed, pattern, and or compression of the sciatic nerve) in the extent of degeneration varies according distribution of a nerve or nerves which, as a Generally, it is neither dangerous nor to each individual and is determined result of the combination of wear and tear sinister unless associated with other by the interplay of the genetic make-up and curvature, have been pinched. Other conditions or if there is serious compression and environmental factors. Some 90- complaints may include numbness or

20 BACKBONE | ISSUE 100 weakness in the distribution of the pinched severe curves. Under these circumstances, stenosis (the literal meaning of stenosis is nerves, loss of height as the discs lose efficient line of gravity falls either in front the abnormal narrowing of a passage in the their height and the curve folds on itself, of the body called sagittal imbalance, or body). Spinal stenosis can cause nerve pain or simply appearance of the curve itself side of the body called coronal imbalance described above as well as a different type becomes unacceptable. or combined called global imbalance. of pain called spinal claudication. This is an Under these circumstances, the muscles unpleasant cramping pressure felt in the What could be the cause of have to work much harder to maintain lower back, buttocks, the back of the thighs pain in this type of scoliosis? an upright posture and therefore express and calves when standing and walking And is pain a sign of continuing the unhappiness of their overwork by pain and relieved by rest and sitting. Although damage leading to my back and spasm. This pain that a lot of people the symptoms are often symmetrical (felt crumbling? find difficult to describe can be sharp, on both sides equally) the pattern and stabbing, catching, or continous pressure severity vary in different people. The pain As I mentioned above, degenerative like someone digging a blunt object in that due to pinching of the nerves sometimes scoliosis is not always painful but when pain area. can be associated with tingling and pins is present – like all pains – it is perceived and needles, sometimes numbness and as a sign of damage. However, the pain Initially and if adjacent parts of the spine much less commonly, weakness. Although associated with degenerative scoliosis, in or nearby other joints such as hips and any of the above can occur in the absence the absence of other conditions, is mostly knees still are supple and have flexibility, of scoliosis, degenerative scoliosis is not a sign of continuous damage nor an the patient compensates, and this is called commonly associated with them. Pinching indication that the spine is crumbling. This compensated imbalance. For example, and irritation of the nerves can also happen pain can be attributed to various causes if the line of gravity falls in front of the due to the condition alone. When the spine directly or indirectly related to the condition body, in order to maintain a forward line is bent sideways, the nerve holes on the and depending on the cause, pain can of vision, the patient may have to extend side where the spine is bending (concavity present with different characteristics, their necks and hips which in turn leads of the curve), naturally get narrower which, patterns, severity, and location. They to pain in the back of their neck and at the if severe could pinch the nerve. Conversely, include but not limited to the following front of their hips. When the limit of this nerves on the side where the curve is circumstances: mechanism is reached then the patient bending away from (convexity of the has to bend their knees, which leads to pain curve) can be stretched leading to similar 1. Pain of muscular origin can take the felt in their thighs and at the front of their symptoms without any physical pinching. form of muscular fatigue, exhaustion, knees. In rare circumstances, the whole overwork, or protective spasm. When compensatory mechanism fails - known 3. Pain due to actual degeneration of the spine in the area of the curve. Although the process of wear and tear is slow and often not painful, occasionally this process, for Generally, adult degenerative some individuals, becomes irritated and inflamed and therefore painful. The spine “ scoliosis is neither dangerous or vertebral column is formed by joining nor sinister of individual bones called vertebrae. The the spine is straight, the line of gravity as a decompensated imbalance in which a adjacent vertebrae are joined by discs in passes through the energy-efficient line person cannot maintain an upright balance the middle of the front of the spine and for muscles to maintain the posture in even with help. two small joints on either side of the back of different activities. However, when there” is a the spine called facets. The pain can come spinal condition even when mild and there 2. Pain due to pressure on a nerve is called from the inflamed discs, facets, or both. is no significant disturbance in the line of neuropathic pain. The process of wear and This pain is likely to be a continuous ache gravity, muscles on either side of the spine tear can sometimes narrow the routes taken or even pain with stiffness which presents have to work differentially to maintain the by individual nerves travelling from the at both rest and movement. There may be upright posture, which leads to exhaustion spine to supply different parts of the limbs. some night discomfort and turning in bed and overwork of a group of muscles. This in As a result, these nerves can be pinched. The can also cause pain. There may also be an turn presents like a dull ache with a bit of pain as a result of this is a sharp, annoying, associated protective muscle spasm. burring or hot feeling or even numbness or and unpleasant and sometimes makes odd sensation in that group of muscles. This people nauseous. The pain is typically 4. Mechanical and instability pain. feeling is typically not felt when lying down continuous but is worse at rest which is Occasionally when scoliosis is severe and the or resting, or early in the morning, and is felt why people with this pain stand and walk trunk gets shorter as a result of wear and tear, mostly at the end of the day when standing around to relieve it. It can also cause sleep the patient tilts on one side. Consequently, on your feet for a length of time. Carrying disturbance. It may cause protective muscle the lower ribs on the concavity of the curve shopping, rucksacks and other weights spasm in the back. Degeneration can also knock on the top of the pelvis and this often make it worse. Muscle overwork cause narrowing of the whole of the spinal causes a mechanical pain. This pain is called and pain becomes worse with more canal leading to a condition called spinal costo-pelvic impingent. In such cases, there

ISSUE 100 | BACKBONE 21 will be no space between the pelvis and the professionals show signs that either they ribs. As explained earlier, occasionally one do not understand their description of pain vertebra may start to slip either forward or or worse they do not believe them. More sideways called anterolisthesis and lateral recently in some pain clinics, there has been listhesis respectively. When the slippage is a move towards the use of images to help excessive, sudden movement in line with patients describe their pain. the direction of slippage causes a sharp pain followed by longlasting muscle spasm What is the best treatment for and a dull ache. degenerative scoliosis?

5. The types of pain described above need In the management of such disease, one size to be distinguished from those due to more does not fit all and the best treatment for serious underlying problems, which when each patient is the one that is individually present require more urgent attention. tailored for that patient having taken into These types are: account the symptoms, condition, fitness, and patient’s choice. If the pain is unrelenting and continuous, day and night with sometimes history of “I have tried physiotherapy loss of appetite and weight loss or if there is and did not work. How could a history of previous treatment for a tumour you correct my curve with or cancer; that?” If the pain is associated with fever, and night sweats; Physiotherapy as part of a comprehensive If the pain is associated with a recent history physical therapy programme remains of fall or accident after which the pain has the initial and mainstay of treatment for become worse; degenerative scoliosis in adults If the pain is associated with significant . numbness and weakness in one or both As mentioned above some symptoms in limbs, particularly if there is a history of this condition relate to muscular overactivity disturbance in bladder and bowel control. and spasm as a result of imbalanced psychotherapy including cognitive posture. Although physiotherapy will not behavioural therapy is helpful. Thus, adults with degenerative scoliosis be able to correct the curve, it will improve may have one or a combination of different the tone and strengthen the muscles to types of pains. The problem remains “Are you saying I am imagining cope with the condition better. Physical all of this?” how the problem can be explained to therapy, however, needs to be supervised the professionals and how professionals at least initially so that it takes into account There is no doubt that degenerative can work out what type of pain is being characteristics of that individual so that scoliosis in some cases can cause disabling described and try to relate that with if the patient cannot cope with one set pain but why some people cope with this the patient’s history, examination, and of exercises a different regimen is tried. pain better than others may at least in investigation. This remains the most Furthermore, sufficient time needs to be part have an explanation in the patient’s challenging part of trying to help a patient allowed for improvement to be perceived. psychological well-being and coping with degenerative scoliosis. Pain is entirely It will also need to be of multimodality mechanisms. subjective and for that reason people including massage and local treatment. cannot often fully describe the physical, Along this line, yoga, pilates, swimming Continuous pain combined with a fear of the emotional and psychological burden and overall remaining active have shown to unknown together with a sense of getting that their pain has put upon them. More help. Along with physiotherapy, sometimes frustratingly for them is when their treating old and hence a failing body is known to lead to psychological maladjustment and even clinical anxiety and depression. That is why combining physical and psychological Pain is entirely subjective and therapy is effective in treating chronic pain. Some people can simply cope with the pain for that reason often people and some people find it difficult for the “ reasons above. It doesn’t mean you’re mad cannot fully describe... [the] but it is how the mind works. Everybody is burden that their pain has put different. “By taking pain killers, am I upon them going to mask the pain so that 22 BACKBONE | ISSUE 100 ” Big surgery for ADS is not “ the inevitable end... there are many other ways that patients’ symptoms can be helped and controlled be avoided if there is a history of severe radiofrequency treatment of facets can give asthma, blood pressure, or gastric ulcer. some longer-lasting pain relief which can Your GP is the best person to be” consulted be repeated in the future. in this respect.. !Is big operation the only way “Can bracing help? Can it out or I can be helped with a correct the curve?” smaller surgery?”

Overall bracing has not proved as effective There are occasions such as those described in adults as when it is used for scoliosis in above, in which the most troublesome children. In severe rigid forms of scoliosis, symptoms can be tied to a localised its usefulness is very much in doubt since problem. Injection therapy sometimes can it can cause pressure problems and sores help to determine that. and sometimes respiratory compromise in at-risk individuals. In some milder and Under these circumstances, a localised slightly supple cases, it can help with pain decompression (taking the pressure off the and spasm of muscles; however, long-term nerve or nerve) plus or minus a localised use of a brace can make the muscles weaker limited fusion surgery can be extremely I can damage my back further and hence be counterproductive with effective in getting rid of or limiting most of without realising? Do the physical therapy, which is trying to build the symptoms. painkillers have side-effects?” and improve the muscle condition. Bracing is also reported by some patients to control In summary, big surgery for degenerative Sensible and safe use of painkillers is some of the sharp pains experienced scoliosis in adults is not the inevitable end. beneficial and effective in controlling pain in when there is lateral or anterior slippage Although corrective surgery can be effective this group of patients. No evidence to date associated with their condition. Bracing, and successful, it is associated with a high has shown that the use of painkillers will however, is not effective in the presence level of serious complications, which is not mask the pain, nor has it shown that it will of spinal stenosis and can make the acceptable to some if not most patients. lead to more structural damage. In fact, to symptoms worse because brace takes away There are many other ways with lower risks be able to comply with the physical therapy the protective and relieving mechanism of that patients’ symptoms can be helped programme, it is often recommended that leaning forward. and controlled with allowing the patients the patient should go on a short course of to a have a reasonable quality of life before pain killers during the initial period. Overall “Can I be helped in any other resorting to corrective surgery. input from a multidisciplinary team is way?” helpful. The type and duration of painkillers depend on the type of pain, as well as the With degenerative disease, sometimes a patient’s medical history and previous use specific type of pain related to a specific of pain killers. area predominates and if it was not for that, the rest of symptoms arising from A general rule of thumb is to keep it simple, the condition itself can be coped with. For regular, and short course. Strong drugs such example, a nerve being pinched in one area as opiates (morphine family) should be or a few facets in the concavity of the curve avoided, particularly over a long period. being overloaded and particularly inflamed and irritated. Under these circumstances, Sources are available from SAUK on request. This article is an Information a targeted nerve root block or a diagnostic All painkillers have side-effects and certain Standard medical article. There is more cautions need to be exercised to reduce facet medial brunch injection can help. information about the Information this risk. For example, non-steroidal anti- If the medial brunch block is positive in Standard on our website, at www. inflammatory drugs (NSAIDs) should getting rid of pain, then a procedure called sauk.org.uk/about-us/the-information- standard. ISSUE 100 | BACKBONE 23 REGIONAL REPRESENTATIVE UPDATES Lynda Williams, South Wales Representative SWS Cymru volunteers outside Welsh Government Gemma Beer, South Wales Representative

Saturday 29th June saw a group of Information booklet explains what volunteers from SWS Cymru head off to scoliosis is and how easy it is to detect, Cardiff Bay armed with lots of goodies. using the Touch Your Toes To Diagnose We spoke to over 500 members of the Test and explains that if they think To celebrate International public and we were amazed by the there is a problem to go to their GP. very positive response we had! Scoliosis Awareness Day, Gemma This we hope will empower parents organised a cake sale at her work, We had a group photo with friends who often ask ‘Why didn’t I find it JCP Solicitors - Cardiff office. who are affected by scoliosis on the earlier?’ It will also allow the child steps of the Senedd - Welsh Assembly to have a choice of treatment. We Her efforts raised a fantastic £50 Building. We publicised our aim to know that if a child chooses to wear for SAUK. Everyone at JCP Solicitors encourage the Welsh Government to a brace, they can often stop the enjoyed eating cake (every day for take onboard our suggestion to email curve progressing and in some cases a week) and raising money for a a simple booklet into schools and ask children have an improvement in their fantastic cause at the same time. them to send the booklet to parents curve. Even if the brace is not successful of children in years 6, 7, 8 and 9. The it helps to make surgery less complex.

Janice Ohlson, North East England Representative Janice organised a coffee morning which she hosted in her garden. It Guests at Janice’s coffee morning went really well, and the sun shone! It was so lovely to see everyone chatting together, sharing their scoliosis stories and experiences, and supporting each other through their very varied scoliosis journeys. We had lots of cakes, bags of ISAD sweeties, and a raffle, and we raised £303 for SAUK. It is so lovely to see the friendships growing in our group with each event we host, and to see young and old joining together to support each other. E x e r c i s e s f o r A d u l t D e g e n e r at i v e S c o l i o s i s Francesca Howes Extended Scope Physiotherapist in Spinal Surgery The Royal London Hospital, and Practice Manager of Forest Hill Physiotherapy

dult degenerative strengthen the muscles around the high cholesterol. It is important to do scoliosis (ADS) is a spine and take some of the pressure cardiovascular exercise, regardless of condition in which off painful areas to potentially achieve your level of activity - for example, by the spine develops some pain relief. It can also help doing aerobic exercise such as using an increased maximize mobility and strengthen a stationary bicycle or stair climbing lateral (side-ways) curve secondary the areas surrounding the lower or activities like swimming and brisk Ato degenerative changes within the spine, such as the neck, shoulders, walking. spine. pelvis, and hips. This is particularly important in those undergoing Suppleness, or flexibility, refers to It can arise through progression of surgery, which often involves fusing the range of movement of joints. an already existing scoliosis from some of the vertebrae (spinal bones) Because of the lateral curve, people adolescence that was not severe together with metalwork to prevent with degenerative scoliosis often enough to warrant treatment at that further progression of the curve, at the end up with some muscles becoming time, or through the degenerative expense of mobility in the spine. shortened (tight) and others processes in a spine that was originally lengthened. Exercises to develop straight. As the joints degenerate they What exercises should I do? suppleness include gentle stretches cause a malalignment in the back, for the tight muscles and working resulting in a bend or curvature. Regardless of whether conservative joints through their range of motion. or surgical treatment is taken there This malalignment can cause back and/ are five general exercise principles 2. Stick to low impact exercise or leg pain because of muscle fatigue everyone should follow. (when muscles get weak, painful, As a general rule, putting excess and tired), and nerve impingement 1. Remember the three pressure on your spine is best avoided. and may lead to a condition known as S’s: Strength, stamina, and Consider replacing heavy weightlifting lumbar stenosis (a narrowing of the suppleness. and high-impact sports and exercise spinal canal causing compression on for low-impact exercise such as, the nerves in the lower back). Stenosis Strength training develops the swimming, gentle yoga and/or bicycle can lead to sciatica (leg pain) and a rides. feeling of tiredness in the legs. strength and size of muscles. In degenerative scoliosis it helps prevent Degenerative scoliosis is most fatigue and wasting of the spinal 3. Pacing common in the lower back and most muscles that maintain good posture frequently occurs in people over 65. It and should be included as part of all Learning to pace activities is an can be treated conservatively through exercise regimens. important part of treatment, since the use of medications, injections, most people tend to do either too physiotherapy and exercise, or with Stamina, or endurance exercise helps much or too little for too long. surgery. Surgery is usually the last improve your cardiovascular fitness. Changing habits is hard but important option if the scoliosis is severe, Performing it regularly increases the in improving activity levels. conservative treatment has failed, and efficiency of the heart, promotes quality of life is poor. better mental health, and increases 4.Aim for exercising two to life expectancy. In scoliosis, more three times a week What is the role of exercise? severe curves can affect the ability of the lungs to expand and make you feel General exercise guidelines Exercise is important in non-operative out of breath when exercising. Many recommend that adults of all ages management as well as in post- people will therefore avoid it, which should undertake moderate aerobic surgical recovery. It helps maintain can have the detrimental effect of activity for 150 minutes a week and or improve activity levels and weight gain, lethargy (tiredness), and strength exercises twice a week. manage symptoms better. It aims to secondary health problems such as ISSUE 100 | BACKBONE 25 5. Make it enjoyable maintain an upright position, without straining through your neck or low back. With scoliosis it may be difficult to meet the ideal posture but it is advisable Exercise should be a lifestyle habit to get as close to it as possible and practice regularly throughout the day. and maintaining this long-term is far easier if you enjoy it. Don’t try swimming if you don’t like getting wet and can’t swim, and don’t spend lots of money on a bike if the idea of cycling in the colder months fills you with dread. Think about your interests and lifestyle and pick exercises that fit around them. For example if you’re an early riser, plan exercise in the morning. If you prefer social activities, look into group classes in your area. Consider researching your local leisure centre or look on the AgeUK website, which have lots of programmes for the over 60s. What exercises can you do after scoliosis surgery?

After surgery, it is often necessary to make some lifestyle changes to minimise your recovery time. For instance, bending, heavy lifting and twisting should all be avoided in the weeks immediately following a spinal fusion procedure, because your spine Pelvic tilts and incision will need time to heal. The pelvis is at the bottom of the spine, Later in the recovery process, you where the legs are attached. Keeping can start to consider your regular the pelvis neutral means it is not tilting exercise routine, which should be forward or backwards. Imagine the under the guidance of your surgeon, pelvis is a bucket of water. If the pelvis who will be able to tell you when you tilts forward the water would spill out are sufficiently healed, alongside a of the front of the bucket and if the physiotherapist who can guide you pelvis tilts backwards water would spill back to more physically demanding out of the back. Only when the pelvis exercises and activities. is neutral will the bucket be level and no water spill out. Aim to practice this exercise regularly throughout the Several exercises for day. For those who have had a spinal degenerative scoliosis are fusion, please check with your surgeon available that you are ok to do this exercise. Posture practice Supermans Poor posture uses lots of energy, meaning our bodies need longer It is common to have weak core for rest to recover. Good posture in muscles with degenerative disease. degenerative disease might be difficult. Core muscles include the deep Often people will lean forwards and stomach and back muscles as well as sideways and to avoid doing this they gluteal (group of muscles which make might bend their knees and tilt the up the buttocks) muscles and this pelvis backwards. exercise targets some of these. Ideal standing posture involves having How to do it: position yourself on your weight evenly spread between both hands and knees on a stable surface. feet. That way each joint is loaded Keep the spine in a neutral position equally. The neck should be straight, without over arching or bending your the hips level, and the pelvis in spine. Draw one arm forwards keeping neutral rather than tilting forward the neck straight with the eyes focused or backwards. The knees should be between the hands. At the same time straight or if there is a leg length slide the opposite leg back along the difference, then one knee straight, the floor and if you can, lift it up to hover other slightly bent. Check your posture off the floor. Hold for 3 seconds, slowly regularly in the mirror, or get others to lower and continue on the opposite check it for you. Think about drawing arm and leg. Perform 10 times and your diaphragm up into your rib cage to consider up to 3 sets in one sitting. 26 BACKBONE | ISSUE 100 Sit to stand out of the two positions continuously for up to 45 seconds. Focus on the Sit to stand is another exercise for symptomatic side where you get leg strengthening your gluteal and leg pain, which for some people might be muscles. It is a functional exercise we both legs. If any tingling or numbness do often throughout the day but also in the legs occurs, stop the exercise. an easy one to do whilst watching TV or reading the newspaper. How to do it: sit forwards in a chair with your feet shoulder width apart and flat on the floor. Hold your arms across the chest to avoid using them. As you breathe OUT, bring the chest slightly forwards over your knees, push the feet down into the floor, squeeze your bottom and stand up. Slowly return back to sitting, focusing on a Tandem walking controlled landing. Repeat 10 times and consider doing three sets of the Balance naturally declines with exercise. To make it easier or harder age and people with scoliosis often alter the height of the sitting surface have poor balance caused by altered for instance by using pillows. posture, which can make daily tasks Side bending difficult. Tandem walking is a dynamic balance exercise, meaning it works Side bending is only for those who balance on the move, rather than just have not had surgery and works to holding one static position. strengthen the spinal muscles needed How to do it:try to walk in a straight to maintain good posture. line on the floor, placing one foot in front of the other, heel to toe or just in How to do it: Position yourself lying a straight line. Do it next to a wall for on your side with knees bent and support if you generally struggle with weight on your forearm, directly balance. Practice for a few minutes under your shoulder, hand facing a day. As it gets easier try it whilst forwards. Lift through your shoulder turning the head from side to side to girdle and then lift through your waist further challenge your balance. to hover the bottom just off the floor if you can. If you can’t fully lift it just try to activate the same muscles. Hold this position for 5 seconds, relax and try repeating up to 10 times. As it gets easier consider holding the position Scapular squeezes for longer. Do it on both sides.

Because of changed posture caused by scoliosis the neck tends to poke forwards causing tight muscles on top of the shoulders, and around the back of the neck, leaving the deep muscles at the front of the neck and the middle of the shoulder blades lengthened and weak. This exercise aims to strengthen these muscles. How to do it: stand in front of a mirror with your elbows bent, palms Sciatic nerve glider facing up. As you breathe out, rotate your hands out to the side and gently Some people with degenerative squeeze your shoulder blades back scoliosis have leg pain caused by and down towards your opposite back compression on the nerves exiting the pocket and draw your chin inwards as spine. If this is the case, nerve-gliding It is normal to get some mild if creating a double chin, lengthening exercises can help lubricate the nerve discomfort when practicing new the neck and drawing the crown of and improve its mobility, particularly exercises but if any of these exacerbate the head up to the ceiling. Hold this after being decompressed by surgery. your pain levels for longer than 24 position for 5 seconds, relax and hours please discontinue. Finally, if repeat 10 times. How to do it: while sitting hold onto you have degenerative scoliosis it one of your legs. Flex the head forwards is worthwhile being reviewed by a and flex the toes of the supported leg Physiotherapist who can assess your up to the ceiling. Then slowly extend posture and physique and prescribe the head gently up, straighten your exercises tailored to you according to knee and point your toes on that same your activity levels, pain levels, and side. Repeat the action and flow in and lifestyle.

ISSUE 100 | BACKBONE 27 MEMBERS’ STORIES Living with scoliosis as an adult In response to the feedback we have to give me a clean bill of health, but I doubt that I will continue to explore any received we made this issue of Backbone persuaded him I would not have any time technique that will keep me active as I an adult-focused issue, so we asked off due to illness with back problems, if advance further into old age. members to share their experiences he passed me fit for training. A promise I of living with scoliosis as an adult. We kept throughout my nursing career with Sue Olver wanted to gather a wide variety of stories the help of osteopathy. ************************************ and portray honest accounts of people’s y parents married in 1938 and experience. We are so grateful to everyone Fast forward to the age of 62 and after waited till almost the end of who sent us their story. Unfortunately several major surgeries, one involving the war, 1943, before having me. we haven’t been able to include all of removal of several ribs, my scoliosis M I have been very lucky and had a very them in this issue, but we will hopefully deteriorated, badly resulting in a happy and fulfilled life gaining a degree be able to use them in future issues of Cobb angle of 65°. I had problems with in fine art which has led me to a teaching Backbone. Some of the accounts have also ordinary activities, such as household career that goes on today. been edited slightly because of space chores/ walking distances/ gardening, restrictions, and names of specialists and DIY, and was taking painkillers on a My degenerative scoliosis was almost companies have been removed . regular basis. This despite turning to my found by accident in 2015. I was having ************************************ tried and tested osteopathy severe pain in my lower back and it his year I reach the age of 72, 58 extended down my right leg. It seemed years from when I was diagnosed I decided that I would attend a Schroth no one could find the answer to the with Scheuermann’s disease, a Clinic in London for an intensive casue. It was only when I was referred T physiotherapy course of treatment. They developmental disorder of the spine to the urology department, with a resulting in upper back kyphosis. have developed a unique programme possible diagnosis of kidney stones, that using the Schroth method and it is a an X-ray showed degenerative changes I was referred to an orthopaedic central part of their treatment. They in the lumbar spine. Although a small consultant aged 14, when my mother also use other well-established kidney stone was also diagnosed it noticed I was slouching and after therapeutic techniques such as, Pilates was not thought to be the cause of the undergoing examination and X-rays was amongst other things. By this time, I pain and I was further referred to the prescribed physiotherapy. An operation was a far from fit 68 year old, exercising spinal unit at the Nuffield Hospital, was not an option in those days. alongside youngsters who were 15-20. I Oxford. There I was given a series of must confess I found the 4 week course appointments with the physiotherapy Physiotherapy took place weekly, onerous, exercising 5 hours per day, 5 department to help me cope with the beginning for some reason with placing days per week. Consequently, by the pain. At this time I was also prescribed my feet in warm wax baths, which was end of week 3 I became ill and had to diclofenac to be taken as a suppository quite pleasant and apparently helped give up. But my scoliosis had improved, to ease the pain in my lower back and with my flat feet. I also had to walk up the pain reduced, and I had an improved down my leg. I hated taking painkillers and down whilst the physio observed quality of life returning to some normal but found I could not really get a good and corrected my posture, and I was activities. night’s sleep without it. Throughout this given a series of exercises to help correct time, I continued to lead a very active the curve in my back. Scoliosis has not until recently interfered life and indulge my great passion for with anything I wanted to do at work or gardening. I could not do long sessions By chance, at the age of 17, I discovered socially, although I have always been and sometimes I overdid it and paid the osteopathy. An elderly man was conscious that my back is not straight, price with much pain. A Pilates class was practising osteopathy in the same and I have been careful with my choice recommended for me but I found that building where I had a temporary job. of clothes. Apart from osteopathy and it gave me more pain. I think this was This treatment had a noticeable effect at times acupuncture, exercise has been because I was not thoroughly examined on my posture and the curve of my part of life for me including walking, before the class to find out what spine, and when I had my next X-ray I gardening, yoga, Pilates, dancing exercises would be particularly good remember the consultant singing the (when I was younger!). When I retired for me. In the end I paid privately for a praises of how physiotherapy could have I found visiting the gym an enjoyable highly recommended physiotherapist a stong effect on scoliosis. I did not have experience, with a programme tailored in Henley. The physiotherapist threw the courage to tell him I had been seeing to strengthening my back and I also me a lifeline. Her straight talking an osteopath since at that time it was joined a Pilate’s class which improved frank approach was wonderful. After not an accepted practice in the medical my muscle strength and flexibility. an examination she gave me a set of field. My recent discovery is the Alexander exercises that particularly suited me. Technique which has helped to improve Around that time, I had been accepted my ageing posture and recreated By 2017 the pain was getting worse and for nurse training and had to undergo an awareness of how I walk, sit, and I took myself off to the GP. She kindly a medical by my GP who was reluctant undertake other activities. I have no referred me to the Nuffield Hospital

28 BACKBONE | ISSUE 100 and after waiting nearly 6 months for and that this showed most clearly an appointment I was seen in October the seriousness of the operation. My 2017. After an initial X-ray the specialist reasons for thinking about surgery were confirmed degenerative scoliosis with to remain active for the latter part of my apex L3/L4 and a Cobb angle of 48°. This life and have the operation while I was had clearly got worse since the X-ray fit and well. of 2015 had shown a Cobb angle of 22°. The consultant recommended a nerve The consultant ordered a CT scan to look blocker for the pain down the right at bone density to see if an operation leg. This was done at the hospital and would be possible. Many thoughts eased the pain in the leg tremendously. about the operation went through my head. I absolutely love my gardening As the curve in my spine becam and think it is a very important part of my life and spiritual well-being. The more pronounced I revisited the doctor Diana Seidl painting to ask for some new insoles to be made 6 month recovery time is also quite for my shoes. Initially I was referred to daunting, normally very active and busy radiotherapy. It was 1977, and I was 11 the local podiatry clinic. They gave me I am not sure if I could cope with this years old. Radiotherapy was quite a new some off the shelf insoles which made period of enforced rest. All has to be treatment back then and not as well the pain in my back worse. I pushed weighed up carefully in the light of long understood and as precise as modern for some custom made insoles and term fitness after an operation. times. The treatment did improve these new insoles really helped my the skin surface of the tumour and walking. It was around this time that I Visiting the hospital again for the results temporarily shrank it a little. told myself I must find out more about of the CT scan confirmed that the bone the condition of degenerative scoliosis. density was fine to do the operation. Over the next few years I continued I had never heard of this before, thank However the consultant thought that to have check-ups. The tumour itself goodness for the Internet. There was at this moment I was sufficiently fit and remained fairly static but I remember so much about this illness and all the well with good mobility to delay the having a lot of back pain. The treatments that were possible, but more operation. He inferred that age was not orthopaedic surgeon was sadly very importantly I found SAUK. One phone the important factor but fitness. arrogant and would not listen to me call with, a lovely lady on the end of the or my mum. I remember Mum once SAUK phone and I was joined up and At present I will continue with the kicking the wall outside with frustration had access to comforting information exercises, and try to walk more. I will because he wouldn’t do anything. from others who had scoliosis. Their continue to visit the physio regularly to magazines have provided further details check I am doing the exercises correctly Eventually my GP sent me to another of the condition. The list of others in the and if necessary change them. Presently surgeon for a second opinion, I was 16 same position as myself, with contact I feel I am doing all I can to help myself. years old. This consultant sent me for details has been particularly good. However, to some extent we are all an X-ray which showed quite a severe powerless against nature and in the scoliosis. He arranged for me to have At the first appointment the surgeon future I may need to succumb to surgery a Milwaukee brace fitted. This wasn’t fully explained all the options open to to make everyday life bearable. straight forward because of the tumour me with this condition, but at that point on my right thigh catching on the brace. in 2017 I felt I could go on managing Diana Seidl I continued with my left foot shoe raise. I without surgical intervention. ************************************ used to walk to school but was getting so Throughout this time I had pain but ow 54 years old, I was born with much hip pain that it became impossible adopted a positive outlook thinking that a huge cavernous benign tumour and my father started dropping me in I could be much worse. I continued the of blood and lymph vessels with the mornings and teachers would bring N me home. exercises almost every day. pockets of blood. It extends from my right thigh into my trunk, up to the All my working life I have been an art diaphragm, engulfing my right kidney, The orthopaedic consultant responded teacher retiring from school teaching and round to my right lower back. This to this hip pain by changing me from in 1995 and doing bits of adult teaching lesion is unfortunately extending very the Milwaukee brace to a full body locally, writing a book on drawing, slowly into the paraspinal muscles and plaster cast! This made no difference and painting on the iPad in 2015, and also into the spinal canal. to the pain, in fact it made it worse teaching art on cruise ships. I always did I underwent several operations as because I couldn’t remove it to release my exercises in the gym in the mornings! an infant and young child mainly to the pressure on my hip. In desperation remove cysts and to take biopsies. For my GP referred me to see yet another The hospital was great and called me some reason my right leg was a little orthopaedic surgeon in Edinburgh. This back every 6 months, and I had another longer than my left, possibly because new consultant was very nice and he said nerve block which helped so much of the increased blood supply. I was from my X-ray he thought I’d finished with the pain down the leg in 2018. I under the care of two consultants at growing and therefore I didn’t need the continued much as before but felt that the Manchester Children’s hospital, cast anymore, I was ecstatic! He listened that the shift of my body to the left one a general surgeon and the other carefully to what my problems were and was worsening so when I went for my 6 an orthopaedic surgeon. I wore a small then did a very simple test. I stood with monthly appointment to the hospital shoe raise on my left shoe. bare feet and he placed a block of wood I felt I needed to discuss surgery. The under my left foot and asked me how it surgeon explained most clearly the The General surgeon, who I remember felt. I said it felt worse, so he put it under surgery involved if they were to correct being a very nice man referred me to the my right foot and asked again. This time the curvature of the spine using rods. I Christie Hospital because he thought it felt better! very much valued his frank approach, that my condition may benefit from It seems that the radiotherapy, which ISSUE 100 | BACKBONE 29 setting until I had to retire early because to see a pain specialist to try and work a of pain and lack of flexibility. I loved my safe dosage of medication to control the job, it was very rewarding and I miss the pain. patients and my colleagues. Because of other health issues, I sleep Since I’ve gotten older my orthopaedic in a chair, so the only relief I get is in the problems have worsened. I don’t form of a hot water bottle, which does have good flexibility and struggle help until I move. I am determined not to get comfortable in virtually any to let this condition control my later life, circumstance - ie, standing, walking, although it took some courage to write sitting, or even sleeping. I of course get to you. Since I work, drive, and look after a lot of pain which is to be expected the grandchildren I cannot take a lot all things considered, however, I still of medication. I was advised to use a try to do as much as I can to enjoy life. walker, so I use my grandchild’s buggy Pain killers help but I also have regular which enables me to do a little bit of massages which have considerable shopping, but take that away and I can benefits. If I found I could no longer hardly stand in queues, let alone walk do something, I found something else through a shopping centre. I have learnt John with his wife, Susan instead! I can’t walk or stand well, so to do the family shop by using loads of dosed only half my spine resulted in my now I have a mobility scooter. I can’t play bags and not overfilling them. I hate the scoliosis and changes to skin and other squash, badminton, or cycle anymore shape of my back as my spine protrudes connective tissue causing a flexion issue ,but I do swim and play table tennis, out a lot now, and I often shut it in doors of my right hip which had also tilted which helps me to retain some small if I turn too suddenly. My clothes hang badly. My bottom rib on the right side amount of flexibility and fitness. I also at strange angles, but still I keep going. now rubs against the iliac crest of the still enjoy concerts, meals, etc. I usually It would be so easy to give up now and hip bone. With all these orthopaedic find that as one door shuts another one yes, some days I do feel the pain is changes it actually meant my right opens. I’m not bitter and don’t feel sorry unbearable, but somewhere I find the leg was functionally the short leg and for myself, I just make the best of what strength to live another day. therefore I’d been having the wrong I’ve got! shoe raised! Gill Milstead Last and by no means least I ********************************** I continued to see the consultant every have a wonderful supportive and was diagnosed with scoliosis in 2003, year for many years but an operation understanding wife, Susan! when I was 64 years old. Before then, was out of the question because the I had had no inkling that anything was tumour was too close to my spine cord. John Critchley I amiss. With hindsight, I realise that I I now no longer attend clinics because ********************************** did have certain minor difficulties with there is nothing that can be done. I do am now 63 years of age and live with posture, but since I was generally very fit, still attend the Christie so that they can ********************************** severe degenerative thoracolumbar I regarded that as something I needed to monitor the tumour which is still slowly kyphoscoliosis. I still manage to work on. I had ridden horses regularly extending and prone to swelling/bleeds I work a part-time position as a Ward for about 30 years and did all my own which adds to my pain. My right kidney Clerk in a hospital, and look after three yard work and was in good health. The doesn’t function properly because it’s grandchildren. Due to the severity of postural difficulties showed up when affected by the tumour. I have had my spine now, I cannot have any further riding, as I was told I tended to collapse kidney stones because of this and they surgery, because I have been given in the middle! That was probably the caused the tumour to bleed through the survival odds of only 20%, and they first sign and I was in my 40s by then. kidney. I also have progressive iliopsoas couldn’t guarantee I would be free of the As a child, I had no problems at all, spasm which is quite disabling at times. pain. and nothing was found on any medical checks. I was always very active. All the problems I had growing up, had I contacted SAUK and became a a huge effect on my self-confidence and member because I was desperate for I went to see the GP because I felt I had a body image and it took me a long time help. They put me in touch with other slight limp. I had a fall on the yard onto to get to grips with this. Thankfully I am members, and gave the names of my concrete, causing a bruise and hip pain, much better nowadays although I’m still local consultants. and although this healed, I thought affected to some degree. it might be connected. I was puzzled, In 2004, I underwent a spinal fusion with because my legs were definitely of the Despite all these problems I was a very titanium rods covering L4, L5 and S1, same length, so I thought it might be a determined person and have tried to as it was private at that time, I couldn’t hip problem. live as full a life as possible. I played afford to go any higher. Whilst initially football, squash, badminton, swam, benefiting from the experience, over the The GP took about 10 minutes to come and in particular I cycled a lot! It was time my scoliosis has worsened. I asked to his conclusion that I had scoliosis. My very difficult because I struggled to walk for referrals to specialist spinal units spine showed a noticeable curve when any distance and standing has always who dealt with specific degenerative I touched my toes, and I could stretch been difficult too, so cycling was easier conditions and was saddened to be further down my side on one side for me. I cycled and camped all over the informed that my curvature was so than the other. We discussed possible country and did numerous charity rides extensive that surgery was not really treatments, and decided that at my age including John O’Groats to Lands’ End an option now. I agreed to try the CT S1 I did not want to have an operation to and from Manchester to Lourdes. I’ve joint guided injections into the areas correct the curve because it might cause always enjoyed concerts, cinema, and but sadly the relief only lasted 48 hours. more pain and I had none. I attended the theatre. I worked for 26 years as a At my recent appointment they sent me the local surgery for a physiotherapy specialist podiatrist within a hospital

30 BACKBONE | ISSUE 100 session, which I felt was of no significant value. Clothing is a minor problem, as anyone with scoliosis will know. Some styles I was then referred to a consultant who simply do not work with the curve, and X-rayed my spine, and declared that it is a case of finding those that do. it was a curve of moderate severity, Tight-fitting waists are a no no for me and ordered some physiotherapy for now. Trousers are a boon, and any dress me. At the hospital, I was put into a without a seam at the waist, because my stretching device, attached to the head upper body is now much shorter than it and foot of a hospital bed. I was then was! I have lost about 2” in height as a given the device and told to use it at result of both ageing and my curvature. home for about 15 minutes at a time. Unfortunately, at home we had no bed- I think that there is definitely an heads/footboards which were suitable inherited predisposition to my scoliosis, for attachment. I attempted to attach because I remember that my maternal it to the rails on the landing, but they grandmother had a pronounced hump were at too steep an angle. This caused on her right shoulder and stood with her Valerie Hughes discomfort, and so I eventually gave stomach slightly forward, which I notice up and returned the device. I decided in myself. She never complained and would get worse and that I needed to to rely on continual corrections of my lived until she was 90. My own mother see a scoliosis specialist. posture and maintaining my fitness. never had any sign of it, just wear and tear spinal pain and later some cervical Following this I had two private I did return to the hospital for 2 or 3 years trapping for which she had an operation consultations because I wanted to get for further X-rays and discussion of my when in her 70s. Her operation was as much information on my condition symptoms, but after a new consultant an emergency, because the trapping as quickly as possible. I learnt that I have replaced the first, he said that because caused severe general paralysis which left-sided lumbar scoliosis with truncal I had no significant pain, I did not need could have proved fatal. She lived to be shift to the right with kyphosis. My pain to come back unless things changed. 86, although was never free from pain score did not warrant an operation. It Therefore, I have not been checked by thereafter. was at one of these consultations that I anyone for many years. I do feel that was relieved to be told both of my legs perhaps I should have been recalled I have warned my children to be aware were the same length. I had begun to every 5 years, just to make sure that I and to check their own children for any use a stick by this time. During time and had no other problems arising from the early signs of spinal problems. for the next few years, I was able to have scoliosis. I just seem to have dropped pain relief by resting. from the NHS radar as far as the scoliosis Mrs Valerie Hughes is concerned. In 2013, I was seen by a consultant and ********************************** had some very helpful exercises for I stopped riding after a while because y husband noticed that my of my un-level hips. I found I was building my core strength, which I still posture was forward leaning in do. constantly slipping to one side in the 2006, which prompted me to saddle, and this was not good for me, or M have some physiotherapy which I found the horse, and it felt insecure. The horse In 2016, I suddenly had no feeling in unhelpful. Then some lower back ache my right leg which was very unnerving. was getting on in years, so I decided to developed a few years before a right retire her, but kept her until she died 4 Feeling came and went and I remember knee replacement in 2009. After the how difficult it was, and how panicked years ago and continued to do all the knee operation the pain became worse yard work every day until then. I felt when this happened on a zebra and I wrongly suspected that my right crossing! I learnt that the nerve leg was shorter than the left one. I had As time has passed, I have noticed that impairment was due to nerve root some more physiotherapy and this time impingement but because this is a the limp has become more pronounced, the physiotherapist examined my back. and to prevent back ache, I use a wedge problem of numbness rather than pain I was told that I had a small curve which there is not much to be done about it. cushion when sitting on hard chairs, to wouldn’t get worse and was fitted with balance my hips. I am sure that my In another appointment in 2016 it was a small pad in my right shoe. This made noted that my ribs were now resting spine is sticking out more on the right walking easier. side at the back than it used to, because on my pelvis and thus it seemed that my curve of 48° would not grow. I was sitting in a dining chair can be painful Back pain again became a problem if I lean back. I cannot stand or walk for advised that a fusion operation would in 2011 and I was taking Ibuprofen be suitable due to my age, then 76 years. long without needing rest. I manage when I consulted a pain management well enough. I have learnt to adapt Since I was able to walk, albeit with specialist who gave me radiofrequency difficulty, a large three stage operation my life to remain largely pain free. A denervation, which was of no help. It good, firm mattress has also proved would put my independence and quality was after this treatment that I received a of life at risk. very effective. I think that my abdomen copy of the letter sent to my GP in which is squashed because of the curve, and the specialist mentioned that I had My most recent appointment was I do suffer from indigestion as a result. scoliosis. Again, I have adapted my diet and eat in December 2016 by which time I smaller meals, which helps. was using two sticks as balance was I knew nothing of scoliosis and a Google becoming a problem. This time I asked search did nothing but shock and alarm Now that I am 80, I still do all my own about having an operation to correct me. It was a great blessing to find out the trapped nerve at L5 but this not housework, except for vacuum cleaning, about SAUK who were holding an which does give pain, so I have a cleaner advised due to my overriding condition. upcoming patient meeting. It was at the Preventing falls is the priority; however I for that. I also care for my husband, who meeting that I learned that my curvature has cancer. have fallen, and need help to get up.

ISSUE 100 | BACKBONE 31 I am now 79 years of age living in a I take up Pilates to strengthen my back 18, and was discharged with an angle ground floor maisonette with my lovely muscles. It was pointed out I was too old between 30° and 40°. I was offered an husband who provides most of the for an operation. operation for cosmetic reasons but meals as I find the kitchen very difficult. chose not to have it. When I was in my I also have osteoarthritis and a painful It was 2007 when I started Pilates and 40s I felt that the curve had worsened shoulder. Scoliosis pain located in my had only been a few times when I and I was referred to a consultant at my right buttock is mostly felt after getting noticed an unusual small lump in my local hospital. I have been monitored up in the morning so I take pain killers. breast, that I thought it was a muscle. annually since then. At 51 years of I wash and dress myself and manage It turned out to be the aggressive form age, the angle is 80-85°, and seems to the laundry. I do most of my shopping of breast cancer. My treatments took have stabilised. If the angle has not online. I am unable to write well due to 2 years but I am so grateful for all the increased at my next monitoring I will osteoarthritis and am very thankful for care I had from the NHS and the staff to be discharged. e-mails. Walking is now very slow and enable me to still be in remission. difficult. I made sure I went to a Pilate’s instructor I have some back pain, if I sit, stand, or that knew their profession, she was a walk for too long. I work for my local Recently, I purchased a tricycle and have physiotherapist also. council and am office based which found a new sense of independence suits me and my back. I swim a lot, and and freedom. When I’m riding it I am About 8 years ago I asked for a one-off do Pilates type exercises, and believe not aware of any of my conditions and appointment with a scoliosis specialist these help keep my spine as flexible as feel like Cinderella at the ball. I go out and had to push a little. I wanted to possible. with my husband in the car and have know what to expect and was it best to just qualified for a Blue Badge because always use a back pack so as to evenly I have enjoyed hill walking and cycling of my poor balance and falls. I am very distribute the weight on my shoulders. since I was little and have just returned thankful to have a wonderful family, He told me both my legs were even! So from a cycle touring holiday in Scotland. some good friends, and a lovely church. my crookedness had evened itself up! I have found a bike I can ride, and a I enjoy life and try to be as independent He also told me that to carry my bag on rucksack I can wear, which do not make as possible. my head if I wanted to and to do what my back ache. For the past 15 years I have I wanted as it was good for the soul! volunteered with Exmoor Search and Mrs Dawn Devanney Hence, I have continued on my merry Rescue Team, one of the 50 mountain ********************************** way ever since but cursing my back in- rescue teams in the country. There are y mother was a single parent to between times. things I can’t do, such as helping to lift both my brother and I. Scoliosis a stretcher with a casualty on, but my was never noticed. I was married Increasingly, and I guess with age and team mates are very understanding and M degeneration, I do suffer a lot from back there are plenty of other roles to do. in 1965 and had our son in 1966 and our daughter the year later. Having a spine pain. If I stand for too long my back that was not straight never entered my will really sting and in fact sometimes I have quite a prominent rib hump on mind. I never suffered from back pain the pain hurts enough that I have to sit my back but no one seems to notice and my husband and I both carried out down. I now have a protruding area on except me! manual restoration work ourselves on my back that is obviously because the I have been lucky and have been able our homes and it never was highlighted curvature has progressed over the years. to manage to keep any back pain to a then. I cannot ride on a bus without the pain minimum. in my back coming quite quickly into the When I was around 45 years of age, I journey, I guess because of the seating. Julia Balmford decided to try Tai Chi and I noticed on I have now been able to go back to Tai ********************************** one particular movement a clonk sound Chi again and I have just taken up Nordic am a French woman of 68 years and was in my back. I worked in an office and walking. The physiotherapist has given diagnosed with idiopathic scoliosis at found that I was suffering from back me exercises, I went to GP a few months 14 years. It was a small double curve ago because of the pain and I am trying I pain, my skirt seemed to be up one side and I was given intensive specialised more than the other, and when I wore my best to do these. Unfortunately, exercises until my 20s. I feel scoliosis trousers, one leg looked shorted than when you have a good day you tend was not taken so seriously then, and I the other. to leave off the exercises, well I do. didn’t have any follow-up. The exercises Most mornings now even with a good seemed sufficient to stop the curve I went to the doctor about my back supportive mattress I wake up with back progressing and I was told that the curve pain and was sent for physiotherapy. pain that eases off once I walk around. I would stabilise when I stopped growing. The physiotherapist said that an X-ray also sleep with a little pillow in between That seemed to be the case until my showed my curvature. She carried my legs to take, the weight off my spine. mid-30s when the curve grew, resulting out the technique to stretch my back I am not really over-weight, but maybe a in hip rotation, loss of height, and with weights. She also said I was few pounds off could help. the curve then becoming noticeable. surprisingly supple with my scoliosis. I do not know if this pain will increase By then I had moved to England. The That statement stuck in my head and I the older I become. Having said all that, surgeon I saw advised against an thought, how have I managed to have I am alive to appreciate the beautiful operation, because at my age he could two children with this condition? countryside where we live. not correct the curve properly, and I was fit and active and dealing with it ok. Back pain gradually became more of Gilly Oliver an issue with my office work and my ********************************** The curve has continued to deteriorate GP sent me to a rheumatologist. He was diagnosed with scoliosis when I with age and is now very advanced did some tests and thought that a heel was 13, my mum noticed I was looking although I’m lucky in that my body is raise to balance the difference in height Ia bit wonky. I had a Milwaukee brace quite well balanced and any lateral could help. Later it was recommended for a year, then a Boston brace until I was displacement is not immediately

32 BACKBONE | ISSUE 100 obvious. A few years ago I had to have an physiotherapists think I’m doing really because my body shape has changed, operation on my lower back to put rods well with my scoliosis. but I feel quite lucky, really, that my and screws on L4 and L5 due to pressure pain isn’t too bad and I’m still able to on the spine and increasing pain. It was I was diagnosed with AIS in 1961 when I move fairly easily. I know I should do successful and reduced the pain. was 12 in the USA. I have an S curve with a more exercise, possibly more walking or prominent right shoulder blade but my swimming as well as the Pilates. I’m just Generally I have managed well with hips are fairly level. I’m not sure if I was not very good at finding the time. It will the condition and despite occasional ever told what the degree of curvature be something to do when I retire! back pain still lead a very active life, was/is and probably wasn’t consulted cycling and walking without too much about what my treatment would be. Christine Mills discomfort. I have also been doing ********************************** regular studio Pilates for the past 15 I imagined an operation in the 60s was a y name is Samantha Golden years which I have found very helpful to scary, experimental option and perhaps and I have lived with scoliosis improve posture and reduce pain. only reserved for more severe cases. I do for nearly 35 years (since I was remember a brace being mentioned, M 12). I had the Boston Brace for two and Michelle Pacteau but that never happened. I did have half years to stop my curves increasing ********************************** was a set of exercises that I did fairly but it made my back muscles very weak. am I’m 41 and was officially diagnosed conscientiously for a few years and I My consultant wanted to operate but it with scoliosis a few years ago. If I did probably went back for regular checks was horrendous in those days, cutting have it when I was in my teens and and X-rays. I don’t remember much you from the front to the back. I had I except that being a physiotherapist 20s then it wasn’t noticeable at all. It little pain back then so decided not was only really noticed when I had my was a career option I considered, so my to have spine fusion and live with my first child and I personally think the experience with them must have been curves. It was most noticeable when I hormones related to pregnancy and positive! wore skirts. I continued to do ballet until giving birth created my scoliosis. It got I was 16 which helped my core. worse with my second pregnancy. My My scoliosis didn’t bother me much. curve is 80° so is quite severe. I am on I was always aware of it, but mostly My mum paid for a private the waiting list to have an operation but because of how my clothes stuck out physiotherapist, not offered to us on I’m still not sure if this is the best thing at the back over my shoulder blade. If NHS, to strengthen my back muscles. I for me to do. I was tired, or had spent a long time used to clean his practice for a discount typing, my shoulder ached, but doing in the end! Olivier was really lovely and I am not really in pain, and it does not my exercises helped to ease that. he gave me hope. I went on to have three affect my life on a day to day basis. I daughters. During pregnancy I had to get pain if I stand for too long. When I came to live in England in 1970, got rest my back but managed to have a 9lb standing up straight my curve isn’t very married and had a child. The pregnancy baby then carried identical twins! obvious, but when I bend down my rib was ok and not affected by my scoliosis. hump becomes obvious. In my late 20s I started going to weekly Sadly both my twins have scoliosis, I had I have lost over 2 inches in height since yoga classes and I think they helped to no idea it was hereditary. They are now my diagnosis which I’m not happy about. keep me mobile. In my early 40s I was 17. One daughter has had spine fusion at I wonder should I have an operation to diagnosed with breast cancer, which was Great Ormond Street Hospital because improve my back and potentially stop successfully treated with an operation she was rapidly developing a scoliosis it progressing at the cost of everything and radiotherapy. Since then, I have and the it was too late for bracing. She that comes with an operation wondered if it was anything to do with is amazing, patient, strong willed - you Katie Allen the X-rays for the scoliosis that I had. forget she’s had anything done, she was back to Sport soon after, Netball and ********************************** In the late 1990s I started doing Pilates I am 72 years old and developed diving in the pool which is great to see. and have done that fairly consistently She now plays drums in her band. scoliosis in my late 50s. I have had four once or twice a week. From about the operations, including an unsuccessful I age of 65, I’ve noticed a significant loss of The other twin was borderline for an operation and one of three planned to height, about 31/2 inches, and have gone undo the problems created by the first operation which is always a harder from 5’8” to under 5’5”. I have also been decision. She has not had the operation two. I was scheduled to have two further diagnosed with osteoporosis. Because operations but we are holding off for the and manages her back pain well. She I was very concerned about the fairly plays guitar in a band. time being. rapid height loss and the osteoporosis, I consulted an orthopaedic surgeon. I Both twins and I suffer with back pain I am a great believer in Pilates and go took some old X-rays and he saw those to a class at least twice a week, have a after standing for long periods or long before he saw me. He was surprised that walks but we don’t let it stop us doing monthly massage, and walk, using a I was as straight and upright as I am, and stick, as much as possible. I really think anything. I did a skydive recently and said he was expecting someone more last year we all did gorge walking. this keeps me going. I don’t want to give bent and wizened! in to my curvature. I now have an annual Having gone through my own journey I review at the hospital but can see them He assured me that I didn’t need an if before this if necessary. was able to support my twins. My mum operation or any dramatic intervention, also went through the trauma for me. but encouraged me to keep doing what Jackie Evans She tried to stay positive and hide it but I was doing. used to suffer the stress before every ********************************** hospital appointment. You do need am female, was born in the US in 1949 I do get more backache now, particularly someone to talk to that understands we and am 70 years of age. I still work in the area between my waist and hips are happy to talk to anyone about our Iin an administration job at the local where I’ve lost most height. There are experiences. hospice for 15 hours per week, and the lots of clothes I can’t wear anymore

ISSUE 100 | BACKBONE 33 You Write

was diagnosed with scoliosis at the age of 21 after i. I’m Paula, aged 61 from Warrington. I have a attending the GP to discuss shoulder strain. I am now scoliosis Cobb angle of 42°. I have lost 1.5” in height. I31 so have coped with the condition for 10 years. H I saw a scoliosis specialist for the first time this summer Under my consultant in Birmingham, I have had and was told that it is progressive and degenerative and numerous conversations about whether surgery was the could not be helped by physiotherapy. I am fairly active, correct route for me because I was diagnosed a little later I walk, hike, and have done Pilates for the past 10 years. than most people. I decided that as I am quite active and Surgery is an enormous step at 61 but even worse if I leave go to the gym five times a week, the spinal fusion would it until I am 70 or 80! reduce my activity and I decided I would only be having the surgery for cosmetic reasons. I hate that my hips are The first I heard about my scoliosis was when I fell off different heights, but I declined an operation. a horse, aged 30 and had a chest X-ray. It was then I noticed my left ribcage protruding at the front. Always I currently live in Leicester and have come to terms been told my scoliosis was fixed and wouldn’t cause me with my condition, there are odd days where I feel a any problems so I never thought anymore about it. Aged bit insecure but I remember that everyone with the 40 I developed neck problems, prolapsed discs etc, and condition, fused or not, are displaying an enormous arm pain. I saw a chiropractor and after a year it settled amount of strength physically and mentally and that is down. It was then I discovered I had one leg shorter than something to celebrate, which led to me running Strut the other. Has this caused my scoliosis I wonder? I had for Scoliosis in July, 2017. This was a fashion show which lower back issues 10 years ago and now have no disc featured volunteer scoliosis and non-scoliosis models space in my lower vertebrae. The past 2 years I have been and raised awareness and funds to SAUK. It was a proud in considerable pain. I noticed what I thought was a large and wonderful experience. For this event I also had my protrusion of tight muscle on one side of my back only to body painted by local artist Emma Fay, and myself and 3 be later informed this was my spine! I was shocked, to say others had our spines painted for Christmas! the least. I have considerable pain hoovering, gardening, cooking, changing , etc. So I did some research on the net The scoliosis community I have found since being and came across Scoliosis SOS in London. diagnosed has increased significantly through social media and people being open and honest with their Does anyone have first hand experience of their 4 week difficulties and triumphs. This also found me connecting intensive physiotherapy course? It’s very expensive. I with scoliosis warrior and actor Eva Butterly and featuring have recently had a consultation with them and 2 hours on her podcast https://www.instagram.com/evabutterly. of physio on a 1-1. I have come away with a lot of exercises but unsure whether to commit or not. I am looking for Although there are blips, I have never been more proud a Pilates and/or Yoga class specifically for scoliosis if to be an advocate of scoliosis. anyone knows of one in my area? I am religiously doing stretches and spine mobility exercises every day in hope. Kelly McCormack I would love to go back to my specialist with a reduced Cobb angle! Would like to hear from anyone who has had surgery in later life and what their outcome was. How long can I put it off?

Thanks in advance

Images by Phil J Vernon Photography CHRISTMAS CARDS 2019 1 2

3 4

5 6 7

SALE SALE SALEsale

8 9 10

SALE SALE SALE

ISSUE 100 | BACKBONE 35 CHRISTMAS CARDS 2019 No. Title Dimensions (mm) Price per pack Number of packs Price of 10

1 Nordic Woodland 126 x 126 £3.50 2 Over the Rooftops 126 x 126 £3.50 3 Snowy Hare 126 x 126 £3.50

4 Snowman and Robin 126 x 126 £3.50

5 Scoliosis visits the Isle of Wight SALE 109 x 109 £2.50

6 Golden Madonna SALE 109 x 109 £2.50 7 Snow Globe London SALE 126 x 172 £1.50 8 Ahoy There SALE 126 x 172 £1.00 9 Peace SALE 140 x 140 £1.50 10 Children and Geese SALE 140 x 140 £1.50 Postage and packaging Total price For orders of 1 pack please add £1.00 Post & For orders of 2 packs please add £1.35 packaging For orders of 3 packs please add £1.89 Optional For orders of 4 packs please add £2.00 donation For orders of 5 packs please add £2.90 Overall For orders of 6 - 10 packs please add £5.00 total

Your details (in block capitals) Address and postcode: Name: Telephone: Email:

Make your donation worth 25% more, at no extra cost to you. By ticking this box: If I have ticked the box headed ‘Gift Aid’, I confirm that I am a UK Income or Capital Gains taxpayer. I have read this statement and want SAUK to reclaim tax on the donation detailed above, Given on the date shown, and any donations I make in the future or have made in the past four years. I understand that if I pay less Income Tax or Capital Gains tax than the amount of Gift Aid claimed on all my donations in that tax year, it is my responsibility to pay any difference.

General Data Protection Regulations The information you supply when completing this form will be used in accordance with the General Data Protection Regulations and for the following purposes: to process information necessary to establish or maintain membership or support; to process information necessary to provide or administer activities for people who are members of the organisation or have regular contact with it; to keep the information while the individual is a member or supporter or as long as necessary for member/supporter administration. SAUK will never sell your information to a third party organisation. We will send your name and address securely to a printing company to send you the magazine. The information you provide will be kept securely. If you have any questions or would like to talk about your membership at any time please email membership@ sauk.org.uk, call the office on 02089645343 or write to us at Unit 4, Ivebury Court, 325 Latimer Road, W10 6RA. UKSA will do everything we can to keep your information secure. For further information please contact us for a copy of our privacy policy.

Please send completed order forms together with your cheque, made payable to ‘SAUK’, to: Scoliosis Association UK, 4 Ivebury Court, 325 Latimer Road, London, W10 6RA Registered Charity No. 1181463 © SAUK | 020 8964 5343 • info@sauk. org.uk • www.sauk.org.uk

36 BACKBONE | ISSUE 100