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.

Scoliosis SOS Clinic founder Erika Maude

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…

Erika on a boat

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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Patient Care Coordinator Kylie Hobson

I have worked for Scoliosis SOS for 10 years this month, and over those 10 years I have watched and played a part in the huge growth of the clinic. We can now say that we have treated patients from all over the world, and helped thousands of people to avoid spinal fusion surgery.

Throughout that time, I have also spent time travelling to different scoliosis conferences throughout the world. I met my wonderful husband - who was in fact a ScolioGold therapist! I underwent 3 rounds of unsuccessful IVF treatment, had my amazing little girl (who were told by a consultant we would never conceive naturally!) and I am now 20 weeks pregnant with our 2nd natural miracle! The support of Scoliosis SOS as an employer and a clinic as a whole has been incredible, and words simply cannot describe how amazing I think the ScolioGold method is.

Kylie with the Scoliosis SOS team

Being rushed through an appointment with an orthopaedic consultant, our patients are often left bewildered in a world of unanswered questions. Patients usually turn to the Internet for guidance and advice.

However, from my personal experience, Google is often the last place patients find that reassurance, and are often left even more worried and concerned about what the future may hold.

So many of the patients and parents I talk to are so confused about their (or their child's) diagnosis and treatment options. Often, they have not even heard about scoliosis and had no idea how quickly it can develop, especially in adolescents. They are often scared, even terrified by what they have been told and have no idea what direction to turn. Most parents or newly-diagnosed scoliosis patients just want someone to listen to them. They want to be given information and facts that are specifically related to their scoliosis, and they also want to hear that there is a very successful, realistic alternative to spinal fusion surgery.

The NHS currently has a very strict protocol for newly-diagnosed scoliosis patients. If a patient’s Cobb angle is less than 40 degrees, they use the relatively non-proactive 'watch and wait' approach. This usually involves a check-up appointment once every 6 months. Rarely is any treatment offered, although occasionally patients are fitted with a hard corset-style brace to try and prevent progression.

What patients are not told is that if they just wear the brace and do no other exercise, the muscles that currently support the spine in their scoliotic posture will probably waste completely, and when they come out of the brace, progression is likely to occur again.

Conversely, research has found that wearing a brace alongside doing specific exercises for scoliosis CAN prevent progression, and patients are often able to hold a non-scoliotic posture when they are not wearing the brace.

Our treatment is designed to strengthen the muscles surrounding the spine, bringing the patient into a more central upright position. The exercises have been proven to reduce the pain caused by muscle imbalance, improve cosmetic appearance by decreasing rotation, and ultimately prevent the patient's Cobb angle from getting any worse. Patients have also been able to reduce the size of their Cobb angle by up to 20 degrees.

Unfortunately, some (not all) orthopaedic consultants are very closed-minded when it comes to exercise therapy. They believe that surgery is the only option once a patient’s Cobb angle exceeds 40 degrees; however, we know this is not the case, and we have helped so many patients to regain control of their lives and manage their condition through exercise rather than by going under the knife.

So, if you or someone you know has been diagnosed with scoliosis, please call Scoliosis SOS and speak to one of our patient care co-ordinators. They will be more than happy to spend time answering all of your unanswered questions, and will be able to offer you advice that relates specifically to your particular condition.

Spinal fusion surgery can come with huge risks for some patients, and being given information on the different options available may just mean you make the decision that is right for you and that you won’t live to regret in 20 years’ time.

From my own personal experience, consultants are not always right and there are always alternatives to what you are told in that 30-minute appointment.

For more information, call Scoliosis SOS on 0207 488 4428 or have a look at our website.

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