Happy new year! 2019 was a truly momentous time for the Scoliosis SOS Clinic, so before we dive into the new decade, we thought we’d take a moment to look back at some of the highlights of the past 12 months:
- New clinics in Birmingham and Bristol! In November 2019, we opened two new scoliosis treatment centres in Birmingham and Bristol, UK. This means that, counting our flagship clinic in London, we now have 3 locations in total – and we’re planning to open more in the near future!
- Scoliosis SOS on BBC One! Back in August, the Scoliosis SOS Clinic was featured on BBC One’s A Matter of Life and Debt. The programme told the story of our founder, Erika Maude, and how she was able to set up the clinic with the financial assistance of responsible lenders Foundation East. If you missed A Matter of Life and Debt, don’t worry – here’s the clip:
- SOSORT Annual Meeting in San Francisco! In April 2019, several members of the Scoliosis SOS team crossed the Atlantic to attend the 14th annual SOSORT conference in San Francisco, USA. The event included a number of enlightening talks, including a presentation from our own Erika Maude on the cost-effectiveness of scoliosis-specific exercise programmes. Watch Erika’s presentation here.
- A visit from an orthopaedic spinal surgeon! In February 2019, orthopaedic specialist Mr Darren Lui (pictured above centre) came to our London clinic to talk to our therapists and discuss the value of physiotherapy in treating scoliosis patients. Read more about his visit here.
And if you think that’s impressive, just wait! We’ve got lots of big things in store for 2020 – be sure to follow us on Facebook and Twitter to make sure you don’t miss any news.
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The Scoliosis SOS Clinic was founded in 2006 by our Clinic Principal, Erika Maude. Erika opened the clinic because she herself had suffered from scoliosis since childhood and wanted to offer people an alternative to spinal fusion surgery.
Here, Erika answers some questions about her personal experience with scoliosis and her future plans for the clinic.
Can you tell us a bit about your experience with scoliosis?
My mother first noticed that something was wrong with my back when I was bending over one day. She took me along to our GP, who diagnosed me as having AIS (adolescent idiopathic scoliosis) but told us not to worry as I would likely “grow out of it”. Over the coming months, this didn’t happen, and after countless appointments back with the GP she finally convinced him that my condition was getting worse and to refer me to see an orthopaedic consultant.
The orthopaedic specialist took one look at my 34-degree curvature on an X-ray and pronounced me an immediate case for spinal fusion surgery. I eventually persuaded him to let me try the alternative: a Boston brace (hard plastic corset), worn for 23 hours per day between my 13th and 15th birthdays.
Unfortunately this didn’t work, and after 2 years my curve had progressed to 42 degrees. My consultant warned me that if I didn’t have surgery, I’d end up in a wheelchair.
What inspired you to set up the Scoliosis SOS clinic?
After that fatalistic prognosis from my orthopaedic consultant, my family set about finding an alternative, which eventually lead us to a tiny clinic in Spain where I went to receive treatment in 2003.
My inspiration to open the clinic came from a desire to keep people from having to go through the experience I had, and also to help the people who are failed by the lack of options available through the NHS. It is so empowering to see patients of all ages take control of their condition and care, and it’s wonderful that we’ve been able to help so many people from all over the world.
What advice would you give someone who has just been diagnosed with scoliosis?
Definitely act promptly! Never underestimate how aggressive scoliosis can be, particularly in children. My friend recently diagnosed her granddaughter with the help of our screening video (see below), which I’d shared on my Facebook page. It was great to see the family act so quickly to get her referred for an X-ray and get started with an exercise programme while they waited for an appointment with an orthopaedic specialist.
With adults it’s a little different, but depending on one’s lifestyle, symptoms can still develop or worsen rapidly – that’s often what has caused the condition to be noticed in the first place. Don’t suffer in silence; there are lots of support groups and sympathetic people you can talk to. Our patient care co-ordinators enjoy answering questions and offering advice to patients and their families following a recent diagnosis or hospital appointment.
What are your goals for the clinic over the next year?
We are in the process of developing regional clinics to make treatment more accessible to people across the UK. Our first locations in Birmingham and Bristol opened last month, and we’re planning to add further locations in early 2020.
What do you get up to when you’re not working?
I love being active, so after work, I’m often to be found at Pineapple Dance Studios learning a new routine – it’s a great way to forget the stresses of the day and really switch off. Such a diverse group of people attend my class, from semi-professional dancers to senior partners of City law firms; it’s a brilliant way to socialise and keep fit at the same time.
When I get a bit longer out of the office, I enjoy getting out on the water. A couple of years ago I sailed across the Atlantic, but usually, it is more coastal cruising, although recently I’ve really got into learning about celestial navigation…
If, like Erika, you’ve been diagnosed with scoliosis and it’s causing you distress, be sure to explore our exercise-based scoliosis treatment courses.
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Earlier this week, Channel 4 aired a documentary called Save My Child. It focused on two young people with lifelong health conditions and their families’ efforts to raise the funds for private treatment.
One of the children featured was Mia, a 15-year-old girl with scoliosis. Here’s a clip from the programme:
Mia’s curved spine, along with the scoliosis brace that she had to wear for 23 hours a day, meant that she was in near-constant pain. At the start of Save My Child, we see Mia lying awake at night and struggling with everyday tasks like tying her shoelaces.
Frustrated with the long waiting lists for spinal fusion surgery – and fearing that Mia’s condition would only get worse with time – her family started researching alternatives. Eventually, they decided to travel to Turkey so that Mia could undergo vertebral body tethering (VBT) surgery.
The Channel 4 programme primarily focused on how Mia’s family managed to raise tens of thousands of pounds to pay for private surgery. What it didn’t do was take a critical look at the VBT procedure itself and how effective it actually is.
Is VBT a good alternative to spinal fusion surgery?
First of all, it’s important to note that VBT is a rather controversial topic here in the UK. It was the subject of much discussion at the recent British Scoliosis Society conference in Cardiff – many British families go abroad for VBT, with Germany and Turkey the most popular destinations, but in many cases there are no formal standards in place for this procedure. And if complications occur back home, the NHS must then pick up the cost of fixing an operation that was paid for privately in a different country!
Fortunately, the outcome for Mia was a positive one (“I’m a lot happier now,” she told Channel 4), but here at the Scoliosis SOS Clinic, we’ve met a number of scoliosis patients who weren’t so lucky. One family came to see us after their daughter had undergone the VBT procedure in Turkey – they were concerned that she didn’t look any different, and in the end they signed her up for a ScolioGold treatment course, an option they had previously passed up in favour of the VBT route.
Potential complications of VBT
If you need another reason to think twice before going abroad for VBT surgery, we have met multiple scoliosis patients who ended up suffering from pleurisy after the procedure. This is a sharp pain in the chest that occurs when you take a deep breath.
Still other patients found that the tethering had been done on the wrong side of the spine, making their scoliosis worse and creating nerve complications.
Finally, it should be noted that the death rate for VBT is 3%. This is significantly higher than spinal fusion surgery.
A safer alternative to spinal fusion
While vertebral body tethering may become a more viable option in the future, there simply isn’t enough evidence of its effectiveness just yet (this is the main reason why VBT isn’t currently available on the NHS).
The Scoliosis SOS Clinic’s physiotherapy-based scoliosis treatment courses offer a non-invasive, low-risk alternative to scoliosis surgery. We have helped patients of all ages to manage their severe spinal curves and live happier, more active lives. On many occasions, our treatment programme has reduced the angle of the patient’s curvature to a point where they’re no longer a candidate for surgery at all!
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Further Reading:
These days, the calendar is overflowing with specific dates dedicated to a cornucopia of themes, recognising everything from ‘World Chocolate Day’ to ‘Talk Like a Pirate Day’.
While events like those may seem a little unnecessary (although any excuse to eat chocolate is fine by us), one date that’s likely to be of particular interest to scoliosis patients is World Spine Day.
What is World Spine Day?
Celebrated annually on the 16th of October, World Spine Day aims to raise awareness of back pain and spinal conditions.
World Spine Day is a recognised date on every continent, with health professionals, schoolchildren and patients alike taking part across the globe.
A key part of World Spine Day is promoting the importance of physical activity, good posture and healthy working conditions – all in aid of maintaining a healthy spine.
A Global Issue
According to World Spine Day’s own statistics, it’s estimated that a billion people worldwide suffer from back pain, and that it’s the single biggest cause of disability on the planet.
Anyone with scoliosis will likely be well aware of the importance of spinal health, and so this special day dedicated to raising awareness is a welcome addition to the diary.
Get Involved with World Spine Day
World Spine Day has over 500 official organisational supporters across the globe, ranging from the NHS to the Hong Kong International Hula Association.
However, you don’t need to be part of a larger organisation to participate. In fact, just about anyone can show their support and help to raise awareness of scoliosis and spinal health in general.
How Can I Support World Spine Day?
If you have scoliosis or have seen the effects of scoliosis first-hand, why not share your story with others?
Tales of triumph over adversity are great for providing hope and inspiration to others in a similar situation.
Simply sharing your own success story or telling people what living with scoliosis is really like can have a profound effect on others and could provide motivation to someone in need.
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