TalkBack, issue 2 | 2015 (BackCare)

■ NEWS

■ EVENTS ■ COMMUNITY ISSUE 2 n 2015

Quarterly magazine of BackCare, the UK’s National Back Pain Association

9

FREE TO MEMBERS

Exercise myth busted

16–19

Don’t delay, be active!

Surgeons speak out

20-21

Surgery can’t fix all

Back from catastrophe

A personal journey

The Charity for Back and Neck Pain www.backcare.org.uk

2 TALKBACK EVENTS

BackCare Events Calendar 2015 NSpine 2015 – Craniocervical to Cervicothoracic Spine 22 – 28 JUNE

“The United Kingdom’s most comprehensive course in Spinal Surgery and associated Specialities”, Nottingham.

More information at www.nspine.co.uk

Free Yoga for Healthy Lower Backs sessions across the UK 22 JUNE – 5 JULY

As part of the first UN-recognised International Yoga Day (June 22), you can take part in free taster sessions of “Yoga for Healthy Lower Backs” – the only Yoga programme specifically for back pain that’s been put through a formal, randomised control clinical trial. Visit www.yogaforbacks.co.uk or contact info.YHLB@gmail.com for more information.

Great North Run 6 JULY

We still have places on the BackCare team for the Great North Run. This half marathon event takes places on September 13, 2015. The closing date for registration is July 6. The fee for registration is £18 and the fundraising pledge is £400. Please visit www.backcare.org.uk/challenge to register.

10th International Alexander Technique Congress 9 – 15 AUGUST

The theme of the 2015 congress is “Empowering Humanity, Inspiring Science” with a full programme of plenary sessions, panel discussions, workshops and evening entertainment, in Limerick, Ireland. Visit www.atcongress.com for more information.

National Back Exchange – Annual Conference 28 – 30 SEPTEMBER

“Tackling Challenges” at the Hinckley Island Hotel, Leicestershire. The must-attend event of moving and handling. Learn, debate, network and reflect in a multidisciplinary environment. More information at www.nationalbackexchange.org

10th Henry V Crock Lecture – 3D printing and skeletal surgery 30 SEPTEMBER

Professor of Orthopaedic Surgery Justin Cobb presents a lecture on this industrial revolution in healthcare. Poster presentations at 4pm, lecture starts at 6:30pm in the Governors Hall, Guy’s and St Thomas’ Hospital (access from Westminster Bridge Road, south side). Contact annegarley@gmail.com for your free ticket.

BackCare Awareness Week 5 – 11 OCTOBER

Back pain doesn’t just affect adults. An alarming proportion of school-aged children also suffer from back pain. This year’s awareness week will focus on back pain in children, particularly looking at school environment and child carers.

Therapy Expo 25 – 26 NOVEMBER

This year’s newly expanded Therapy Expo featuring 40+ hours of CPD and exhibition will be at the NEC, Birmingham.

Register for just £79 + VAT using the discount code AD3 at www.therapyexpo.co.uk/backcare. You’ll also get free entry to the co-located Occupational Therapy Show.

TALKBACK l ISSUE 2 2015

TALKBACK WELCOME 3

Welcome Welcome to TalkBack, I hope you’re making the most of the glorious weather. For overseas readers, it’s late spring going on early summer here in the UK which means deep blue skies and long sunny days.

Whether you’re already a member, have picked this up at an event or are reading online, we’ve got a great issue for you. BackCare publishes TalkBack quarterly and now also sends out a free monthly email newsletter which you can sign up for on our website at www.backcare.org.uk/join.

What a busy few months we’ve had. It was Carers Week earlier in June, with hundreds of events taking place across the UK. You can find out what BackCare got up to on pages 4-5. As we go to press, we’re in the middle of transforming BackCare head office in time for our “Active Working” launch – you can read more about that in the next newsletter.

Back in April, we emailed our individual members to participate in an online feedback survey. Thanks to everyone who took part.

The results are in and we’ve published your comments and suggestions on pages 6-7. The email newsletter is a great example of something new that we’re doing in direct response to feedback. If you missed out on the survey because we don’t have your email address, you can update our records and participate in the survey at (URL for subscribed members only).

Our almost-resident physiotherapist Nick Sinfield returns for the second instalment of his 2015 mini-series, on page 9. This time he’s tackling the fear of exercise and movement – a common “yellow flag” that predicts long-term pain and disability.

Contents

BackCare on TV

We’ve got two powerful features from orthopaedic surgeons who are speaking out about the alarming trend in dangerous and unjustified back surgeries. “Unfortunately, there is a false belief that surgery or new technology can fix back pain. This is far from the truth,” says George Ampat. “The term ‘degenerative disc disease’ is not accurate. Disc degeneration is not a disease and does not cause pain,” says David Hanscom. You can read George’s article on pages 14-15, and David’s starting on page 16.

We’ve got the personal journey of Gillian Fowler whose life changed in a fateful instant when she fell from her horse in 2008. Since then she’s become an inspiring example of turning fate on its head and taking back control.

Wow. What a great issue. I hope you find value in these pages. The next issue will be out in September when the focus will be BackCare Awareness Week and back pain in children, but make sure you’re signed up to the monthly newsletter so we can keep you posted in the meantime.

4

Survey findings

6-7

Ask the experts

12-13

Wrongful interventions 14-15

Dr Adam Al-Kashi Head of Research & Editor of TalkBack We welcome articles from readers, but reserve the right to edit submissions.

Paid advertisements do not necessarily reflect the views of BackCare. Products and services advertised in TalkBack may not be recommended by BackCare. Please make your own judgement about whether a product or service can help you. Where appropriate, consult your doctor. Any complaints about advertisements should be sent to the Head of Information and Research.

All information in the magazine was believed to be correct at the time of going to press. BackCare cannot be responsible for errors or omissions. No part of this printed publication may be reproduced, stored in a retrieval system or transmitted in any form or by any means without permission of the copyright holder, BackCare. ©BackCare

BackCare 16 Elmtree Road, Teddington, Middlesex TW11 8ST Tel: +44 (0)20 8977 5474 Fax: +44 (0)20 8943 5318 Helpline: +44 (0)845 130 2704 Email: info@backcare.org.uk Website: www.BackCare.org.uk Twitter: @TherealBackCare Registered as the National Back Pain Association charity number 256751.

TalkBack is designed by Pages Creative www.pagescreative.co.uk and printed

by Severn, Gloucester.

Failings of surgery

16-19

Back from catastrophe 20 TALKBACK l ISSUE 2 2015

4 TALKBACK NEWS

Caring for the carers participate!

Calling all BackCare members!

Would you like to: l become an advisor on research steering committees l give independent feedback on clinical trial protocols l participate in the development of new medical devices l take part in research questionnaires and surveys?

Patient feedback is an important part of clinical research. As the UK’s only charity dedicated to back pain, BackCare is uniquely placed – connecting patients, doctors, researchers and industry – to help turn the tide on back pain.

If you suffer from back pain and would like to get involved with research, please visit www.backcare.org.uk/research

BACKCARE ON THE BEEB The BBC ran a story about chronic/persistent pain on its Breakfast programme on June 12. BackCare’s Adam Al-Kashi was interviewed on the BBC Breakfast sofa with Pete Moore, a pain sufferer of 20 years who developed the Pain Toolkit – a self-management guide for people with persistent pain.

The free 15-page Pain Toolkit is available to download in a dozen languages from www. paintoolkit.org – we hope to be interviewing Pete Moore for the next issue of TalkBack.

TALKBACK l ISSUE 2 2015

More than 1 in 10 of us are unpaid carers in the UK – that’s almost 7 million. In looking after a friend or family member with an illness or disability, they provide a vital service to society, saving the Social Services more than the entire NHS annual budget every year.

But being a carer is not without its own physical and psychological health risks, and 70% of carers already have back pain.

June 8-14 was National Carers Week. Events nationwide aimed to raise awareness about the role played by unpaid or family carers and about their own health and wellbeing needs. It also focused on the new Care Act that took effect this year – it is now the legal responsibility of councils and local authorities to identify unpaid carers in their community and address their health needs preventatively.

Marathon runners raise more than £30,000 The runners of Team BackCare who took part in the Virgin London Marathon on April 26 raised more than £30,000 (including Gift Aid).

The money will go towards helping people with back pain find the support they need.

Many thanks to all our runners and to the friends and family who supported their efforts.

Well done to James Ruddick who raised the most of any runner with £2,761.51 (including Gift Aid). Well done also to James Gleave, our fastest man with a time of 3:04:05, and our fastest woman, Rachel Scott who finished in 3:27:34.

We have guaranteed places for the 2016 London Marathon – don’t miss out! Join Team BackCare today at www.backcare.org.uk/challenge. There’s also still time to enter the Great North Run, a half marathon which takes places in September: registration closes July 6.

Dave Adkin and Stuart Blackman representing BackCare at a carer event in Hounslow civic centre BackCare had stands at events in London and Birmingham, talking to local carers and providing information. Our Carer’s Guide proved popular with copies being bought up and distributed in the thousands by county councils up and down the country.

Runner

Finish time

Total raised

Vic Aboudara

06:44:07

£1,871.76

Tom Askew

03:58:56

£1,488.50

Simon Barrett

05:10:32

£1,625.00

Elizabeth Bosworth

04:12:04

£979.59

Michelle Cross

04:58:17

£1,832.51

James Gleave

03:04:05

£1,085.00

Andrea Goodfellow

04:27:50

£1,528.75

Anna Hlavsova

04:07:06

£565.00

Christopher Huss

04:08:58

£1,517.25

Samantha Jones

04:19:32

£1,331.50

Kayleigh McGrail

06:19:21

£1,304.25

Rawdon McMaster

03:56:24

£557.50

Peter Reach

04:00:03

£1,780.50

Paul Richardson

05:40:13

£866.25

Alex Richardson

04:53:18

£1,640.13

James Ruddick

03:35:18

£2,761.51

Rachel Scott

03:27:34

£2,250.00

Angelique Smit

03:54:10

£1,411.25

Heena Tosar

03:51:34

£2,166.56

John Williams

05:22:53

£925.39

Dean Wright

03:28:34

£1,437.50

Good vibes for spinal cord injury patients Studies have shown that vibration therapy can help to relax and rest muscles, reduce pain, reduce anxiety and stress hormones and improve blood circulation. Now it is being used to help rehabilitate spinal cord injury patients.

All 12 NHS spinal cord injury centres are now equipped to provide vibration therapy.

Philip Elin, speaking for Niagara Healthcare,

which makes the ‘cycloidal’ vibration devices, said: “We are delighted that our Cyclo-Therapy is being used to great effect at NHS spinal cord injury centres across the UK. Cyclo-Therapy can be found in our range of adjustable beds and chairs and is helping provide a drug-free alternative for pain management to those suffering from conditions including arthritis, oedema and sciatica.”

TALKBACK NEWS 5

Yoga helps with lower back pain…

The first United Nations-recognised International Yoga Day was on June 22. But with so many different kinds of Yoga available, back pain patients are often unsure which to choose. The Yoga for Healthy Lower Backs programme (www. yogaforbacks.co.uk) is the only Yoga programme specifically put through clinical trial for back pain. The Yoga for Healthy Lower Backs Institute

has now trained more than 300 qualified Yoga teachers to run the programme, and more than 4,000 back pain sufferers have already benefited.

BackCare has asked the Yoga teachers who developed the programme and conducted the clinical trial, Alison Trewhela and Anna Semlyen, to create a practical mini-series for TalkBack – watch this space.

…and alters the brain

Yoga researcher, Alison Trewhela

The evidence in support of Yoga for chronic/long-term pain continues to grow. We’ve known for some time that chronic pain is associated with changes in the brain. Now we have compelling evidence that mind-body techniques such as Yoga and meditation counteract the brain changes seen in chronic pain. Speaking at the American Pain Society’s annual meeting on May 15, Catherine Bushnell, PhD, a scientific director for the US National Institute of Health (NIH), said: “Imaging studies in multiple types of chronic pain patients show their brains differ from health control subjects, and practising yoga has the opposite effect on the brain.”

TALKBACK l ISSUE 2 2015

6 TALKBACK FEEDBACK

Members’ feedback survey In May, we invited you – our individual members – to participate in an online feedback survey. We asked you to rate BackCare membership and TalkBack magazine, and about how you’d prefer to be contacted and how frequently.

Here are the results.

Key findings How you rated membership

More than 60% felt that BackCare individual membership is good value for money; more than 70% said it gave them a better understanding of their pain; and nearly 90% agreed it provided them with practical advice and support.

How you rated TalkBack

More than 80% think TalkBack is clear and makes sense; around 60% said TalkBack supports them personally; and two-thirds of you feel that TalkBack is balanced and impartial.

How we contact you

Nearly 90% said they would never want to receive a phone call; more than 40% said they would like to receive a monthly newsletter by email; and the majority of members said they were happy with quarterly postal contact.

Your comments answered “I am a supporter and donor – not a person with pain at present. Encourage more supporters and donors to join – I am glad to know about what is going on in the world of pain, pain research and treatment and can offer information to others suffering back pain if wanted. More case studies and practical advice e.g. exercises and self help.”

BackCare: We really appreciate your support.

Most of our individual members do suffer from back pain. However, as you point out, there absolutely is a place for donors who simply recognise the importance of tackling the world’s leading cause of human disability head on.

We hope to provide more resources to enable supporters.

“Get impression from TalkBack that back pain is all in the mind. Pity there’s no advice like exercises when in pain and no exercises to

What does your BackCare membership provide?

TALKBACK l ISSUE 2 2015

prevent pain. Particular advice e.g. exercises rather than just saying in mind.”

“Would like more careful exercises. My NHS physiotherapist gave me the wrong instructions which caused excruciating pain. Give practical advice. I later found a Yoga position for people with back problems.”

BackCare: Thanks for your feedback. We’re pleased to announce that the Yoga teachers who authored the high-profile ‘Yoga for Healthy Lower Backs’ trial have agreed to create a practical, evidence-based advice and guidance series for TalkBack – watch this space.

We avoid the phrase “all in the mind” because it is not accurate and reinforces stigma; the brain plays a part in every medical condition to some degree.

“Have more contact with branches. Communicate more at branch level. More local news. Bring more to the branches.”

“Provision of space for branch activities on BackCare’s website. This was available until a few years ago. Things are mainly satisfactory as they are. TalkBack has improved greatly in recent months.”

BackCare: Branches (our national network local support groups) are a really important part of what we do. With the new website in place, we will soon be reinstating dedicated pages for each branch. We are also streamlining our policies on how branches are set up to make it easier for supporters to get involved in this way.

TALKBACK FEEDBACK 7

“It would be useful if I could bulk buy some individual copies from time to time.”

BackCare: You can certainly purchase previous issues. Just send us an email or drop us a line with your requirements.

What do you think of our quarterly magazine?

“I’d like more in-depth articles – more detailed information on conditions, treatments, research etc.”

BackCare: Thanks for your feedback. We hope to bring you more in-depth articles in upcoming issues.

“More advice on different treatments and link into other health problems, e.g. I have fibromyalgia.”

“I have not found practical advice. It will be difficult due to my complex back/leg problems: spinal stenosis/sciatica/scoliosis/arthritis in the spine/osteoporosis.”

“Make it less preachy! For example, the lecturing on how one should stand rather than sit. This advice is useless for somebody like me who has very painful feet that makes standing close to impossible.”

BackCare: Thank you. We really appreciate your comments. Back pain often coincides with other symptoms and conditions. Watch this space. If you have a personal story of working through complex health issues that could support and inspire others, we’d love to publish it. Please send to yourstory@backcare.org.uk “Is BackCare a user led organisation? How much do Professional Members and Corporate Partners influence how the organisation works?”

BackCare: Good questions. No, BackCare is not a user led organisation in the sense that members do not act as decision-makers.

However, we aim to serve our members and the general public through our research, education and outreach activities.

Similarly, our Professional Members and Corporate Supporters (formerly termed Partners) do not influence BackCare’s decision-making.

Where we choose to collaborate, it is on the basis of independent evidence – for example, BackCare, the British Heart Foundation and Macmillan Cancer Support are “strategic partners” of the Active Working CIC because we all recognise the evidence that links prolonged sitting with ill health.

“I think the art of advocacy and self advocacy should be highlighted and assistance through knowledge given to empower within a ‘health’ system that can, sadly, more often than not, disempower the very people they wish to assist.”

BackCare: Thank you. BackCare is currently engaged with this important topic as a part of helping people to better navigate the healthcare system. Watch this space.

“I would be interested to see a geographical depiction of where BackCare has its membership and supporters. Living in North Wales with back pain means I cannot visit the Back Pain Show, but it would be good to view it on video! I am sorry I have not attempted to run a branch. I support and advocate BackCare in other ways.”

BackCare: Thanks for your comments.

We have members spread nationwide, with particular clusters around London, Cambridge, Southampton, Hull, Birmingham, Swansea, Edinburgh and Leeds.

Videos of events are a great idea – we’ll look into it.

We appreciate all your support and are working towards making it easier for people to create local support groups in their community.

“More articles written by NHS staff, surgeons physiotherapy, pain management, also private sector. An interim newsletter between magazines, advertise the organisation in waiting rooms, encourage physiotherapists, surgeons and primary care to inform patients of the organisation.”

“More success stories, positive interviews. Stats on how much health boards and government actually spend on chronic back pain.”

BackCare: Thanks for your feedback. We have articles from two surgeons in this issue and we hope to continue this trend as suggested with more articles written by NHS and private healthcare professionals.

We love to publish success stories (see Gillian’s story on pages 20-21) and encourage members to share their stories at yourstory@backcare.org.uk Based on member feedback, we’ve now created a monthly email newsletter that you will have already started receiving – thanks for the suggestion.

Regarding stats on spending, we’ve tended to focus on the evidence for interventions themselves because spending more money doesn’t necessarily amount to doing more good.

But spending is perhaps a good indicator of commitment. Watch this space.

Members: make your voice heard You can take part in the survey by visiting (URL for subscribed members only) – there’s still time.

At the top of the online survey form, you can put in your email address so you won’t miss out on future invitations and opportunities!

The first action we’re taking on this is to create a new monthly email newsletter to keep you updated between issues of TalkBack. If we have your email address on file you will have already received the May 2015 newsletter. If you’d like to receive the newsletter, you can update our records at the same time as completing the online survey.

TALKBACK l ISSUE 2 2015

8 TALKBACK SOCIAL MEDIA

Mary Burstow’s social media round up BackCare’s website has really taken off. We are now consciously driving traffic to our site, encouraging people to use our library of advice and information on all things backs. The most popular sheets are those on the difference between an osteopath and chiropractor and on the links between physical activity and reducing back pain.

Mary Burstow

There is no doubt that sitting too much in the office is a real source of concern. When BackCare put out “Chair-based exercises for office workers”, the fact sheet flew off the website. The level of engagement we receive whenever we put out information on “Get Britain Standing”, active working and the Sit-Stand revolution, tells me there is a very real need for more information and advice in this area.

We are now talking to practitioners to see if we can create a series of fact sheets giving more practical help on how to avoid injuring your back, doing office work and what your options are when back pain strikes.

Richard III

In her shoes

Some of the best social media campaigns happen spontaneously.

One of my favourites had to be the #Inhershoes on Twitter.

An eight-year-old girl took on Clarks over its “sexist” shoes range, saying she would rather wear dinosaur trainers than a pair covered in flowers and butterflies.

Sophia Trow took to social media to vent her frustration after being told the Stomp Claw range of dinosaur trainers was for boys only.

She tweeted the multinational company, saying: “Dear Clarks, I don’t like how girls have flowery shoes – I like dinosaurs and fossils, so I think that other girls might as well.”

The eight-year-old from Middlesbrough said she was upset when she was told the specific range, which leaves behind “awesome” reptilian footprints, was not suitable for the female bone structure.

What followed was an explosion of images by women, showing Sophie that not all women have to wear kitten-heeled court shoes to work. BackCare joined in the fun: I shared my rather grubby trainers with the world.

BackCare @TherealBackCare March 27 At @TherealBackCare we wear comfortable shoes you can Sit and Stand in while working #InHerShoes @getGBstanding

The campaign was also important in that it showed the wide variety of career any child can aspire to – astronaut, geologist, scientist and engineer…

TALKBACK l ISSUE 2 2015

Prolonged sitting

In March, the world went Richard III mad when his remains were reburied at Leicester Cathedral. Richard is powerful evidence that people with idiopathic scoliosis of the spine can lead a normal active life, ride a horse, wield a sword and kill people!

Skyisdim @phlexi 5 February 2013 Richard III, scoliosis and me | Julie Myerson: Seeing Richard III’s skeleton, I felt a shiver of empathic pain... http://bit.ly/1SqVvZH

Julie Myerson’s article left me wondering if Richard was in real pain from his scoliosis and how this affected him. There was the suspicion that Richard III may have kept his condition secret. I hope things are changing on this front now.

medieval history @medievalbook April 15 Did Richard III keep his scoliosis a secret? No mention of Richard’s distinctive physique... http://bit.ly/1CH0dJi #history #medieval

We are @TherealBackCare

TALKBACK FEATURE 9

Take back control In this four-part miniseries, NICK SINFIELD tackles four of the most commonly held back pain myths that delay or even prevent rehabilitation and recovery. Nick is a chartered physiotherapist, BackCare Professional Member and Clinical Director for Spring Active.

Part 2: “Exercise is dangerous for me, I need to protect my back from moving” – MYTH! A common effect of pain is that you can become fearful of movement or believe that a certain movement will damage something. You think you are doing the right thing by protecting your back, when in fact you should be moving and doing physical activities that move the spine normally. Moving and bending consistently with a rigidly protected back will prevent your recovery, not help it!

By not bending and moving correctly, this places strain on already sensitive soft tissues.

This protective muscle guarding limits the back moving as it is meant to. Your anxiety and fear of moving the back can generate altered movement and ongoing stiffness. Restoring confident fluid movement in the spine will, over time, make it less sensitive to flare ups. When starting to exercise, it may well make your back sore – it is important to be aware of this – but this soreness does not mean it is getting worse. It is similar to moving and exercising an ankle after a sprain.

Getting the rate of exercise right and gradually increasing it is the important part.

Your exercise plan should be a journey of sustained commitment, not too timid, not

together to keep the spine balanced and in control. All the muscles around the spine play an important role in making smooth co-ordinated movement possible. If your wrist just came out of plaster after a fracture, you would be told to get it moving as soon as possible to help the healing and return the joint to normal. Compare this to your back, which is made up of lots of joints which need fluid movement, not over-protection and guarding. too aggressive in your approach and aiming to achieve a slow and steady increase in the amount of activity you can do. Ease up if you need to, but always keep moving forwards. Even if your pain and stiffness is longstanding, the structures of the spine must move in order to recover and function correctly for everyday life.

Developing an understanding of the body and visualising what is happening inside the back makes exercise and movement easier and helps to reduce the fear. Remember, your back is surrounded by many strong muscles and ligaments and these require movement.

Your muscles work

The muscles are the orchestra and our brain is the conductor

In overcoming your fear of movement or certain activities,

your own attitude makes a big difference. The more fearful or tense you become, the more difficult it is to move freely.

This is where strong resilience, staying calm and clear thinking are important for recovery.

Benefits of movement

l Reduces muscle spasm and tension l Improves blood flow, reduces inflammation and provides nutrients to the area in pain l Increases soft tissue mobility l Increases confidence to complete everyday activities l Reduces anxiety l After 10 minutes of exercise, the brain produces “happy chemicals” that have a calming effect on nerves.

Don’t miss out on this offer Spring Active is offering BackCare members a 15% discount on its self-management workbook The TakeBackControl System – 10 Recovery Steps.

Enter coupon code SA28 for this discount at www.springactive.com/back-pain-shop

TALKBACK l ISSUE 2 2015

10 TALKBACK BRANCHES

BACKCARE BRANCHES The BackCare branches are a network of local support groups up and down the country. They are run by local members who organise educational, social and fundraising events. You can find your local branch in the listing, right.

If you’d like to start a branch in your area, please contact branches@backcare. org.uk

CAMBRIDGE • 56 members Contact: Ms Mary Griffiths Email: blincomary@gmail.com

READING • 24 members Contact: Mr David Laird Telephone: 0118 947 0709 Email: davidlaird@talktalk.net

DERBY • 61 members Contact: Mrs Christine Sissons Telephone: 01332 763636 Email: chris.sissons@btinternet.com

SALISBURY • 122 members Contact: Mrs Barbara White Telephone: 01722 333925 Email: white.alan@btinternet.com

ESSEX • opens in June 2015 Contact: Mrs Lyndee Oscar Telephone: 01206 804353 Email: lyndee@kidsbacks4thefuture.co.uk

SOUTHAMPTON • 32 members Contact: Mrs Irene Bowron Telephone: 01794 340256 Email: irene@macgregors-shadeplants.co.uk

HARROGATE & DISTRICT • 32 members Contact: Mrs Lin Tippey Telephone: 01423 865946 Email: keithandlin2@btinternet.com

SWANSEA (WALES) • 56 members Contact: Ms Gloria Morgan Telephone: 01792 208290 Email: gloriamorgan@talktalk.net

HULL & EAST RIDING • 90 members Contact: Mrs Beryl Kelsey Telephone: 01482 353547 Email: kelsey59@kelsey59.karoo.co.uk

WEST LONDON • 15 members Contact: Mrs Teresa Sawicka Telephone: 020 8997 4848 Email: tere_ss@yahoo.co.uk

LOTHIAN (SCOTLAND) • 66 members Contact: Mrs Jean Houston Telephone: 0131 441 3611 Email: jean.houston@blueyonder.co.uk

WEST MIDLANDS • 11 members Contact: Mrs Thelma Pearson Telephone: 01902 783537

POOLE & BOURNEMOUTH • 5 members Contact: Mrs Patricia Bowman Telephone: 01202 710308 Email: patriciabowman@ntlworld.com

WINCHESTER • 39 members Contact: Ms Gillian Rowe Telephone: 023 8025 2626 Email: gillianmrowe@hotmail.com

Hull & East Riding branch We had our open day on May 13. The purpose of the day was to enable people with back pain to help themselves.

Treatments and demonstrations included neck and shoulder massage, magnetic therapy, acupuncture without needles,

Shiatsu massage, and aqua reflexology. It was very successful with about 30 people attending. Several were interested in our other events and a few actually joined the branch on the day.

We were short of helpers as usual, so

this time I appealed to Time Bank. We have used their people to give talks at our speaker meeting before, but this is the first time we have had them at an open day.

Good to have free help.

Beryl Kelsey

Upcoming Hull & East Riding events: Date

Event

Details

July 1

The therapeutic use of magnets

Beryl Kelsey

July

Petanque tournament

Date and venue TBA

September 2

Exercise medley

Beryl Kelsey

October 7

Permaculture

Lausanne Tranter

November 4

Bowen technique

Rita Muth

December 2

Christmas social

Branch members

BackCare branches are run by volunteers to support local pain sufferers.

Can’t find a BackCare branch in your local area?

Why not start one?

Contact branches@backcare.org.uk to register your interest TALKBACK l ISSUE 2 2015

TALKBACK BRANCHES 11

Reading branch The Reading branch of BackCare was founded in Battle Hospital, Reading, in 1998. Battle Hospital was closed in 2005 and we now meet every Tuesday evening at Pulse 8 Health and Fitness Club (Mole Rd, Sindlesham, RG41 5DJ), where we hold two 60-minute hydrotherapy sessions (6-7pm and 7-8pm). The pool is heated to a minimum water temperature of 34°C. The sessions are supervised by fully trained physiotherapists and are restricted

to a maximum of 11 participants a session.

Sessions are fun, for adults of all ages and are held throughout the year, other than during pool maintenance. Members sign up for one term of six sessions at a time, which currently costs £66 a term.

The sessions provide an opportunity for back pain sufferers to chat and meet one another and form a network of support.

We also organise social events throughout the year.

We currently have spaces and are looking for new members to join us. We would welcome anyone who would like to come along – we offer an initial one-off taster session at a reduced cost of £8.

No level of physical fitness is required.

Everybody works at their own level.

Join us to reduce your pain and improve your fitness!

David Laird

Lyndee Oscar and Ned Wombwell at the Streetwise event

Essex branch We had a BackCare stand at an event in Colchester called StreetWise on June 13. The event celebrated healthy eating, physical activity and emotional well-being and sought to involve as many people as possible, of all ages, in a range of educational and enjoyable activities.

The osteopaths of the Essex branch, Ned Wombwell and myself, provided

preventative back care workshops and offered support and advice to visitors to the stand.

In other news, we have formed a partnership with Penstripe, a publisher and specialist in UK school planners. They are helping promote back care awareness by inserting a BackCare page within the school planners.

During BackCare awareness week in October, we will hold an event for the inauguration of the Essex branch with an invited guest speaker and a social fundraising event at Gaston House (Gaston Street, East Bergholt, CO7 6SD). We aim to continue to setup a network of health professionals and events in the local area.

Lyndee Oscar

TALKBACK l ISSUE 2 2015

12 TALKBACK PARTNERS

Ask the experts Following on from the last issue, we ask representatives from our supporting clinical member associations to give their thoughts on a real patient question that we recently received.

The patient

“

I am an active man who walks two miles twice a week and goes to the gym twice a week for light weight exercise to upper body and legs just to keep my muscles toned. I’ve had degenerated discs in my neck and lower back for 15 years. I have pain at times down both arms and legs. The neck pain is now mostly at night and

I just can’t sleep. My left hand goes numb every time I nearly fall asleep and wakes me up. After two days of very little sleep, I take a sleeping pill and sleep for 8-10 hours. I also take tablets for acid reflux problems, but before the neck pain it was no problem. The lack of sleep is now having a worse effect than the pain. What are my options?

”

Tom Sydenham (British Acupuncture Council) BAcC First, although the patient indicates that he takes medication for various issues, one would always encourage him to seek medical advice from his GP for his symptoms. From the diagnosis he gives, it appears he’s had MRI scans and x-rays in the past. This, if nothing else, would rule out anything more troubling in his clinical picture.

The symptoms of pain and numbness from his neck into his hands may be a result of swollen tissue that the nerves must pass through in order to innervate your peripheries (hands and feet); a good nervous and blood supply is important to keep tissue healthy.

Evidence shows that traditional acupuncture can help by balancing out blood cortisol levels which helps in the normal healing process. Also levels of endorphins (the body’s natural opiates) and a molecule called adenosine (which is also a natural painkiller and aids sleep) are released when specific acupuncture points are used.

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A [traditional] acupuncture practitioner would trace the meridians (or energy pathways) to determine which are involved in your symptoms.

The bladder meridian for example would involve the neck, back and leg pain and numbness; his hands may involve the lung and heart channels.

This may be a cause of his sleep problems.

He would be treated constitutionally and symptomatically; the [traditional] acupuncture practitioner would choose points that would help not just on a physical level, but on an emotional and spirit level too. Grief may cause the symptoms he describes as well as degenerative disease.

He should stay hydrated as desiccated discs afford less cushioning of the vertebrae. He should ensure his pillows are neither too low nor too high as this may cause disc compression when in bed. He would also benefit from gentle meridian massage (Tuina).

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Robin Lansman, Institute of Osteopathy (iO) Pain and insomnia can aggravate one another and are a prompt to seek professional help. Both arm and leg symptoms could be a warning of a possible spinal cord issue.

An osteopathic assessment could explore the often less serious reasons behind these symptoms, offering techniques and advice to help safely address the problems from a functional perspective when appropriate.

A “tug of war” between muscle and joints creates tension on the nerves both to the stomach and the arms and legs. Sleeping upright to avoid “acid reflux” creates a shortening of the front of the neck muscles lifting the top ribs, pulling on nerves and creating the pins and needles. Medication-induced deeper sleep reduces movement at night, resulting in even greater stiffness.

Careful pressure on the area above the collar bone by skilled hands in combination with neck and arm movements can help inform the diagnosis.

Neck degeneration can be investigated with hands on palpation as a first step. Arthritis can be used loosely as an explanation for neck pain.

A patient’s age is a factor; however, wear and tear is normal and varies from person to person.

Bad postural habits at the gym or even the wrong pillow height are frequently an issue and can be spotted as risk factors well before pain even starts.

Loosening, exercising and then heating contracted neck muscles and freeing the upper back with gentle manipulation helps, too. A gradual reduction of pillow-height can then be introduced, together with diet and meal-timing adjustments can help reduce reflux.

Reversing the build-up of hidden problems over several weeks can progressively address the crisis. Gentle hip and back stretches to mobilise lower spinal joints can relieve tension further.

Osteopaths are trained to provide a detailed assessment to inform an individualised care plan at any stage for this type of presentation.

Dr Max Forrester, British Medical Acupuncture Society (BMAS) The patient’s main symptoms seem to be left sided neck pain with left hand numbness.

A “work-up” with appropriate medical and occupational history would be required, including establishing whether his sleep position and gym routine are significant. Examination would be required to rule out cervical disc/nerve root compression, shoulder dysfunction, and peripheral neuropathies, and I would want investigations such as chest x-ray and MRI carried out, as there are potentially worrying symptoms. I would be particularly concerned about the “red flag” of night pain. His age may also influence diagnosis and management.

Provided my serious concerns were allayed, I would conclude that he probably had myofascial pain (Scalene Myofascial Pain Syndrome mimicking Cervical Disc Prolapse).

I would go on to ask more about the pain: the nature of the pain, the width of pain (whether it’s greater than 5cm or not, to differentiate nerve pain

from muscle pain), the duration and frequency, and the distribution or pain referral pattern.

I’d want to know if it is true numbness or numbness associated with myofascial pain syndrome.

I’d want to know whether his pain/numbness could be reproduced in the clinic, for example using palpation for active trigger points to reproduce pain/numbness or using provocation tests like Scalene Cramp Test.

Practitioner plan: acupuncture to treat trigger points in target muscles – scalenes, subclavius, pectoralis minor.

Patient plan: maintain good posture, avoid using repetitive movements and lifting heavy objects. Undergo physical therapy to learn exercises that strengthen and stretch muscles to open the thoracic outlet and improve range of motion and posture. Take frequent breaks at work to move and stretch. Maintain a healthy weight. Apply massage/heat to the painful area.

Acknowledgements Many thanks to the following for contributing their time and knowledge: Robin Lansman, DO. Vice president – Institute of Osteopathy, Principle of Body Back-Up Osteopathy and senior tutor – British School of Osteopathy.

Dr Max Forrester, member of the BMAS Council and independent medical acupuncturist.

Tom Sydenham, BSc (hons) Traditional Acupuncture, British Acupuncture Council member.

TALKBACK l ISSUE 2 2015

14 TALKBACK INSIGHT

A surgeon’s perspective on surgery for back pain George Ampat is a consultant orthopaedic surgeon with a special interest in spinal disorders currently based at Royal Liverpool University Hospital. He qualified in medicine at the University of Madras in 1986 and moved to the UK in the mid-1990s, joining the John Radcliffe Hospital at Oxford University as a specialist registrar in orthopaedic and trauma surgery.

After years of surgical practice, and witnessing the alarming trend in unnecessary and inherently risky surgeries being performed, he has decided not to operate. His mission now is to provide quality orthopaedic and spinal opinion, particularly to patients who have doubts about their diagnosis, are unsure about surgery or who have not improved after surgery.

T

hough back pain is one of the most common health problems, its cause is not usually clearly identified. More than 80 per cent of adults will experience an episode of back pain at some point in their life. Half of us will have back pain in a given year. Men and women of all ages can be affected by back pain.

Most back pain is simple and will settle with no active intervention. The general advice is to keep mobile and to rest as little as possible. However, back pain can be worrying and needs to be looked at if patients have “red flags�. Red flags include the history of cancer, infection, fever, inability to pass water or numbness in the saddle area. If these symptoms are not present, then back pain can be managed with mobilisation, simple stability exercises and over-the-counter medication.

Research shows that only two or three patients out of 100 who attend a health professional for back pain finally require surgery. The remaining 97-98% get better without surgical intervention1.

Unfortunately, there is a false belief that surgery or new technology can fix back

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pain. This is far from the truth. Surgery is very rarely required for back pain. Surgery is generally only needed when the nerves in the back are compressed and that causes leg pain. This leg pain in association with back pain is commonly called sciatica.

Though numerous inventions and devices have come into the market claiming that they would resolve back pain, it has all made a quick exit when subsequent research has not substantiated their claim.

The usual cause of sciatica (back and leg pain) is a disc prolapse and in most cases it usually resolves without surgical intervention. The vertebral column is composed of blocks of bones with cartilaginous cushions in between these bones. The cartilaginous cushions are composed of a firm covering with a softer inside just like a jam doughnut. In a disc prolapse the softer inside comes through the firm outer covering and pushes on the nerves that go down into the legs.

This is like how jam may come out of jam doughnut. Even with sciatica there is no need to consider any surgical intervention for six weeks if there are no red flags. Most

sciatica and leg pain is usually resolved within this period.

However, some patients who continue to experience significant leg pain beyond six weeks may benefit from surgery. A recent research from America performed in different centres compared patients who underwent surgery and those who did not2.

That research has shown that surgery in carefully selected patients is beneficial over non surgical methods and the benefits persisted for up to eight years. Equally, that same research showed that patients who did not undergo the operation also continued to improve over the same eight year period.

There were a number of patients even in this research study who refused surgery and have done well without surgery.

Unfortunately, there is also worrying evidence of unnecessary and wrongful surgical interventions in the spine. Dr Epstein from Winthrop University suggests that 60.7% of patients who attended their hospital and who were previously recommended to undergo spinal surgery by other spinal surgeons did not require spinal surgery3.

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Dr Trang Nguyen, a researcher at the University of Cincinnati, College of Medicine, reviewed records of 1,450 patients from the Ohio Bureau of Workers’ Compensation database who had back pain. Half of the patients had surgery to fuse two or more vertebrae in hopes of curing low back pain. The other half had no surgery, even though they had similar diagnoses. After two years, just 26% of those who had surgery returned to work.

That’s compared to 67% of patients who did not have surgery. The most worrying finding of this study was that there was a 41% increase in the use of painkillers, specifically opiates, in those who had surgery. The study provides clear evidence that for many patients, fusion surgeries designed to relieve pain from a bad back do not work4.

When the first operation does not work, sometimes a repeat operation is required on the spine. This type of surgery is called failed back surgery. Research from the Netherlands showed disappointing results after spinal fusion for the treatment of failed back surgery; 65% of the patients were worse off after the operation than before. The researchers recommend that non-operative treatment is probably more beneficial5.

The media hype around new devices and operations, and the false promises that they may provide magical cures,

may be down to the commercialisation of medicine and the spinal devices industry in particular. The spinal devices industry in America alone is worth £11 billion. This is the single biggest sector in the medical device industry, beating even the market for pacemakers and cardiac surgery6.

To quote an example, a device called GelStix7 has been in use since 2010 for implanting into worn out discs. This device is manufactured in the United States but has never been approved for use in American patients. Instead, it is being implanted into patients from the UK and other countries. Excluding company literature, the only publicly available research evidence on this device was published in 2014, presenting a complication where the implanted device had fragmented and was compressing the spinal nerves8.

Unfounded claims of miraculous cures for back pain are by no means uncommon.

This is true for many devices or new cures that appear for back pain. It is possible that the lack of a reliable cure for back pain is driving industry to invest in new research. However, patients should be very cautious before agreeing to undertake any procedure with a new device. The large surgical device industry may be pushing the need for surgery; patients and professionals need to be cautious before embarking on surgery for back pain.

It is possible that a new surgical fix for

back pain may be an empty promise. Any patient considering surgery must take into account that surgery can backfire, leaving patients in more pain. Patients with bad backs should understand that there is no easy solution. There is no magic bullet.

It is vital that patients scale back their expectations. Legally, it is also possible that consent between a vulnerable patient in severe pain and an enthusiastic surgeon may not withstand the legal test of a fair consent in the future. With appropriate treatment, pain can be eased, but a complete cure is very difficult.

There is no magic bullet.

It is vital that patients scale back their expectations

REFERENCES: 1 2

…there is worrying evidence of unnecessary and wrongful surgical interventions in the spine

3 4

5

6 7 8

A Zubovic, M Cassels, E Cassidy and F Dowling. Incidence of spinal surgery for patients with back pain. http://www.bjjprocs.boneandjoint.org.uk/content/91-B/SUPP_II/284.4 Lurie JD, Tosteson TD, Tosteson AN, Zhao W, Morgan TS, Abdu WA, Herkowitz H, Weinstein JN. Surgical versus nonoperative treatment for lumbar disc herniation: eight-year results for the spine patient outcomes research trial. Spine (Phila Pa 1976). 2014 Jan 1;39(1):3-16.

Epstein NE. Are recommended spine operations either unnecessary or too complex? Evidence from second opinions. Surg Neurol Int. 2013 Oct 29;4(Suppl 5):S353-8.

Nguyen TH, Randolph DC, Talmage J, Succop P, Travis R. Long-term outcomes of lumbar fusion among workers’ compensation subjects: a historical cohort study. Spine (Phila Pa 1976).

2011 Feb 15;36(4):320-31.

Arts MP1, Kols NI, Onderwater SM, Peul WC. Clinical outcome of instrumented fusion for the treatment of failed back surgery syndrome: a case series of 100 patients. Acta Neurochir (Wien).

2012 Jul;154(7):1213-7. http://americanactionforum.org/sites/default/files/OHC_MedDevIndPrimer.pdf http://www.replicationmedical.com/joomla/products/gelstix Durdag E1, Ayden O, Albayrak S, Atci IB, Armagan E. Fragmentation to epidural space: first documented complication of Gelstix(TM.). Turk Neurosurg. 2014;24(4):602-5. www.pubmed. gov/25050691

TALKBACK l ISSUE 2 2015

16 TALKBACK INSIGHT

Spinal surgery is not the David Hanscom is an orthopaedic surgeon based in Seattle who has been performing complex spinal surgery since 1986. In this time, he has amassed significant expertise in treating adult and paediatric patients with a wide range of spinal conditions, including deformities, fractures, tumours and infections.

He spends a large part of his practice devoted to helping patients who have suffered multiple failed spinal surgeries. Through his observations, David learned that the central nervous system is the key player in the development of chronic pain and that most spinal surgeries should never be performed.

I

am witnessing a disturbing trend of major spinal surgeries being performed on spines that are normal. I want to be clear that a “normal” 60-year-old spine does not look the same as a “normal” 20-year-old spine. As you age, the discs between the vertebrae lose water content, narrow down and form bone spurs around the edges. It has been well documented that all of these changes are consistent with the aging process.

By the time you are over 60 these degenerative findings are present in 100% of people – most of whom do not suffer from chronic back pain.

Research has documented that there is essentially no connection between disc degeneration and back pain. The term “degenerative disc disease” is not accurate. Disc degeneration is not a disease and does not cause pain; it’s just part of normal aging, like grey hair.

What is puzzling is that, despite there being no evidence to support the connection between disc degeneration and pain, there are hundreds of thousands of spinal fusions being performed for back pain in America every year based on the MRI scan showing disc degeneration.

Increased pain

Research shows that over half of patients have significant improvement six months after a fusion for lower back pain, but by two years this number drops to less than a third. Additionally, the re-operation rate is 15-20% within the first year, there is over a 30% chance of having increased pain after surgery, and even a higher chance that you may enter the terrible reality of becoming a “failed back surgery syndrome”

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patient – condemned to suffer crippling pain for the rest of your life. Your capacity to thrive and enjoy your life shrinks to less than zero and your life becomes one of just surviving the adversity caused by pain.

Unfortunately, there is a feeling among patients and professionals that surgery is the “definitive” answer or the “last resort”. It is definitive only if an anatomical abnormality causing the corresponding matching symptoms can be identified. I can only fix what I can see.

Otherwise surgery is not a choice at all.

How has the medical profession reached the point of thinking that operating on normally aging spines with a 75% failure rate can be considered a definitive solution for lower back pain?

That is not all. There are over 1,000 peerreviewed research studies showing that the presence of anxiety and depression are strong predictors of poor outcomes of surgery.

Several other research papers show that a patient’s level of anxiety and depression is a better predictor of surgical outcomes than the anatomical lesion. Yet a recent paper out of Baltimore showed that surgeons assess the mental state of their patients less than 10% of the time.

Surgeons somehow feel that they can figure this out on their own in the middle of a busy clinic. Two studies have shown that a surgeon can accurately assess the level of a patient’s stress only about 25-40% of the time regardless of the number of years the surgeon has been in practice. In fact, the senior surgeon’s ability to determine the patient’s level of mental distress

There is essentially no connection between disc degeneration and back pain. The term “degenerative disc disease” is not accurate

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definitive answer

was no better than that of medical students. With modern medicine’s emphasis on production and seeing patients quickly, I cannot imagine that this situation is improving.

Case study 1

I evaluated a young dental hygienist who presented to my office complaining of right-sided neck pain. It is well known that muscular neck pain is an occupational hazard of anyone working in the dental profession. The prolonged bent-over and leaning postures are a real problem. Her neck MRI showed mild degeneration of her lower discs that were a little less severe than I am used to seeing for someone her age. She was still working but was experiencing increasing anxiety consistent with working full-time and being the mother of young children.

I was puzzled why she was seeing me for what was obviously a non-surgical problem.

She was seeking a second surgical opinion, as she had seen another spinal surgeon who had recommended a two-level fusion of her neck.

If you think the data is poor regarding fusions for lower back pain, there is no data supporting the idea that it would work for muscular neck

pain. There is also a significant risk that her spine would break down over time above and below the fusion. A fusion creates a stiff segment that causes the forces associated with normal movement to be concentrated at the ends of the fusion. As she was only 38 years old, the possibility of this problem eventually occurring is significant. Again, the odds of creating problems are higher than the chances of solving them. I am always happy when I have the opportunity to intercept someone headed down a likely negative surgical path.

More commonly, I see patients who have undergone major surgeries that have failed.

Frequently, they have undergone multiple procedures before they come to my office.

That is one reason I am considered a “salvage surgeon�. It is upsetting to me that this term even exists. As I look back through their prior imaging studies, I often see that the first operation was performed on a normally aging spine and should never have happened. There were either complications from the first operation or a cascade of negative events was precipitated that became impossible to stop. continued on p18

Again, the odds of creating problems are higher than the chances of solving them TALKBACK l ISSUE 2 2015

18 TALKBACK INSIGHT

from p17

Case study 2

Jay was a 60-year old lawyer who had been disabled by chronic pain for more than 10 years.

Part of his problem was a badly damaged hip that had caused him to be wheelchair-bound for the last six years. His lower back had some minimal stenosis (narrowing of the space within the spine which can put pressure on the nerves) between his third and fourth vertebra but it was not causing any leg pain. His main complaint was lower back pain, which would have been treatable using an organised, structured approach. Surgery should not even have been an option since there was no identifiable anatomical problem that could have been considered a

X-ray of a multi-level thoraco-lumbar spinal fusion

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source of the pain. His spine was also completely straight and needed no correction in that regard.

Largely due to experiencing chronic pain for so many years, he was understandably extremely anxious, frustrated, and depressed.

For reasons that are unclear he underwent an eight-level fusion from his 10th thoracic vertebrae to his pelvis. It became infected. He required two more surgeries and a prolonged hospitalisation to clear out the infection. None of this helped his baseline mental state and he developed the hallmarks of post-traumatic stress disorder after about three months of intense suffering.

When I saw him about six months after the fusion, his spine had broken down right above

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the top of the rods at his ninth thoracic vertebra.

He now had a deformed spine and was bent forward about twenty degrees. His spinal cord was also pinched and his legs were rapidly becoming weak. I had to perform emergency surgery, which successfully preserved the function of his legs. But his pain is worse and society has had to bear the costs of four major surgeries in 18 months. I am estimating that more than $750,000 has already been spent while creating more problems for him.

Huge decisions

I wish I could tell you that this is an uncommon occurrence. I am seeing variations of this story every day. The state of medicine at the moment is focused on procedures and volume. Major procedures are frequently being recommended and performed after just one clinic visit. These are huge decisions with life-altering implications.

How can a decision like this be made during one visit?

My team has adopted the following protocol for non-emergency spinal surgery.

1) Rarely is a surgical decision made on the first visit.

2) Our patients have to assume responsibility for learning about the various aspects of pain and then essentially take charge of their own care.

3) Sleep, anxiety and depression are always picked up on our intake questionnaire. Surgery is not performed until a patient is actively involved with calming down his or her nervous system, and anxiety is less than 5 on a scale of 10.

4) The patient must be sleeping at least seven hours a night – this usually requires sleep medications for a few months.

5) Pain medications must be stabilised.

6) Neck or back pain must be significantly diminished, if not gone. Neck and back pain does not resolve with surgery. The patient’s understanding of this must be clear. (Conversely, surgery works well for resolving arm and leg pain.)

7) It is important to understand that surgery is only part of the solution. Addressing physical conditioning and the central nervous system are equally important and must be carried on indefinitely.

fewer failures and the successes seem to be thriving more. Ordinarily, there are a lot of residual nerve pains that can occur after surgery and last indefinitely, but my impression is that this is also now less of a problem for our patients.

Most importantly, to me, is that anxiety will drop dramatically and continue to drop. Quality of life improves at every level, especially with close relationships. This phase of my career has been incredibly enjoyable and rewarding – and unexpected.

I am a busy spinal surgeon. Surgery is just one tool that I feel fortunate to be able to offer in the context of a full rehab process. The “definitive answer” for your spine problems is for you to understand all the variables that are affecting your pain and take charge of your own care. You are the only one who can do it. The stakes are high.

I had to perform emergency surgery, which successfully preserved the function of his legs

Left and below: David Hanscom in the operating theatre

Quality of life

My team view surgery as just one tool. What has been eye opening for us is that, not uncommonly, a patient’s pain will disappear when they engage with our pre-surgical protocol, even with an identifiable structural source of pain that would have responded well to surgery.

If surgery is performed, the pre-surgical protocol makes the whole experience much easier. The post-operative pain is less. Patients mobilise and rehabilitate more quickly. There are

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20 TALKBACK SELF HELP

Gillian Fowler has always loved the wide outdoors, with skiing, golf, hillwalking and horse-riding being important parts of her life.

In 2008, all that changed when a horse-riding accident resulted in her back being broken and doctors querying whether she had broken her neck…

My journey back from catastrophe

‘‘

I remember that fateful morning vividly – it was a glorious February day, very cold, blue skies and sparkly grass from the frost, and I remember being so happy to be out on such a day. But my memory then fails me, as I can’t remember the accident itself, only that there was a small group of us cantering in the fields near an Aberdeen riding centre. To this day, I have no memory of why I came off. I do remember excruciating pain as I lay on the ground and I knew instantly that I was badly injured. I just didn’t realise how bad.

Being treated in Accident and Emergency was a frightening experience, especially as I was alone. I still remember the lovely doctor who was taking care of me clasping my hands together, telling me to listen carefully as she explained I had broken my back and perhaps my neck. No words can explain the emotions of that moment.

I was so relieved to see my parents when

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they arrived at the hospital that evening, as they were, and always have been, a great support. And this time was no different, I honestly don’t know how I would have coped without them. But they were clearly extremely worried and I knew I was in a bad way.

The doctors told me that the accident had resulted in an unstable break in L1, a lumbar vertebrae in my back, and possibly C5 (my neck). Thankfully, my neck was given the all-clear, but I had to have surgery to stabilise my back fracture. It was only after this surgery that we realised I had nerve damage as I had no feeling in my right leg and foot. I was in Trauma for a number of weeks where I was fitted with a back brace and began the long process to build strength and learn to stand and walk again. This was a time of frustration and fear, yet also joy as I could finally take those first steps. I was then transferred to

another hospital to continue my recovery, and I was determined to get home as soon as possible!

Without a doubt I had low, teary times (usually 4am from exhaustion and worries), but I have a lot of good memories too; over the years, I have met and had such laughs with amazing staff and patients, some of whom have become close friends.

Spinal surgery

Getting home in 2008 was a huge occasion and the fighting spirit was fully ignited as I needed to prove to myself that I could manage and not rely on anyone; though, of course, I am blessed to have loving family and friends in my life.

The recovery didn’t go quite as planned, and I’ve had five spinal surgeries, two related surgeries, regular spinal injections, years of physiotherapy as well as attending the pain clinic.

Despite all this, I know I am so very lucky.

I have experienced paralysis, temporarily, and live with pain and limitations, but I have become even more determined to live a normal life and enjoy every moment.

At times I can feel disheartened by how my mobility is affected, the permanent effects from the accident, and my chronic

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pain, but my way to cope has seen me constantly setting new goals and timeframes for my work and personal life.

Some friends and family perhaps don’t understand why I have the need to set dates and plan ahead, but it is critically important to me. It was the same while in hospital during 2008, but then it was out of necessity as my memory was badly affected, so lists and notes were used to track my days. Planning and date setting is my coping mechanism.

My recovery continues, but I’m overjoyed at where I am. I have also discovered that I best manage my pain through exercise – walking, Pilates, physio, exercise DVDs – and choose to avoid medication where possible. If I don’t do any exercise, my pain builds, so I really know that exercise helps.

I miss the outdoor life I used to have, but last year I was able to enjoy hillwalking again. Just months after a spinal surgery, I climbed the UK’s highest mountain, Ben Nevis, with my boyfriend. We didn’t tell anyone we were doing this because I didn’t want to be told I shouldn’t be doing that. It was a tough climb and I had to use poles to help keep my posture. My boyfriend carried the rucksack because I can’t take weight on my back; I had the

important task of carrying the bumbag with chocolate!

The climb was amazing, the weather was clear and the scenery was breathtaking – what more could I ask for? That day I knew I had moved to a whole new level in my recovery and mindset. I called my parents from the top to share this huge achievement.

Pain trigger

I am determined not to let my “invisible disability” define me, though I accept I need to adapt how I do things, including duration of travel, transport, seating, carrying shopping, standing, attending functions, choice of footwear, nights out, any social gathering arrangements – the list goes on. Even something normal like going to a restaurant poses a challenge because so many now have wooden seats, which are hard and give no support, therefore proving to be a pain trigger within 10 minutes. Restaurants really should consider cushions!

Throughout these years, I have felt passionate about wanting to help others.

Just a year after breaking my back, I took part in the Aspire Swim, the equivalent of swimming the 22 miles of the English

Channel over 12 weeks. I have also undertaken sponsored walks and attended charity functions, but I’m always looking at other ways to support others.

I believe that one thing key to my recovery was absorbing myself in my work and I admit to being a “workaholic”.

I have predominantly worked in marketing, events and communications within the oil and gas industry following a career as a senior sub-editor with a large, regional newspaper in my native Aberdeen. I am now enjoying running my marketing and event management business, as well as being excited about my new venture, BackStrong Adventures.

BackStrong Adventures specialises in overseas challenges for anyone with an adventurous spirit. We particularly welcome inquiries from those suffering from injuries, depression, trauma, bereavement, disability and any other life-changing ailment. I want to encourage people not to give up when life is hard, to set goals and believe in their ability – with training and determination, you can achieve your dreams.

My experience has taught me that life goes on and if you are determined, and willing to adapt and ask for help, the adventure goes on! Stay strong.

’’

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22 TALKBACK ADVERTORIAL

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24 TALKBACK NEWS

participate!

Calling all BackCare members!

Would you like to: l become an advisor on research steering committees l give independent feedback on clinical trial protocols l participate in the development of new medical devices l take part in research questionnaires and surveys?

TALKBACK l ISSUE 2 2015

If you suffer from back pain and would like to get involved with research, please visit www.backcare.org.uk/research