June: Scoliosis awareness month EARLY INTERVENTION is key
What is Scoliosis? You may have heard that Princess Eugenie, Yo-Yo Ma, Usain Bolt or Martha Hunt -to name just a few- have scoliosis, but what is it?
Scoliosis is a curvature of the spine in a C or S-shape, the spine can also rotate. Broadly speaking, all cases of scoliosis can be placed in one of two categories: functional or structural.
Functional scoliosis is the appearance of a curved spine but it is caused by another condition, such as different leg lengths.
In structural scoliosis, as the name suggests, the structure of the spine is actually altered. There is often no clear underlying cause for this type of scoliosis leading it to be labelled idiopathic (unknown).
Some kinds of scoliosis are present from birth, and others develop in childhood, adolescence or as we age.
Some people have a lot of pain, some have occasional pain, and some have none.
Although there are similarities, no two experiences are the same.
Treatments depend upon the type of scoliosis and its severity. Often, a wait-and-watch approach can be taken when degree of curvature is low. Although, in Juvenile and Adolescent Idiopathic Scoliosis (AIS) things can change quickly due to the rapid rate of growth at these times.
Bracing may be offered, not to correct the spine but to prevent curve growth. There are several types of brace, they are often worn both day and night. My daughter wore hers for 20 hours a day, for two years. This bought her some time and allowed her to complete her growth before surgery. (She’s an absolute hero and I’m incredibly proud of how she’s managed things so far.)
There are several kinds of surgeries: Vertebral body tethering (VBT) is fairly new and not currently offered on the NHS because its long-term efficacy is unknown. In the US, where it is more commonly offered there are reports of repeated surgeries due to instrumentation failure. The benefit of this technique is that it aims to preserve flexibility. It works best on smaller curves and on adolescents who are yet to have their major growth spurt.
Growing rods are typically used on younger patients. Traditional growth rods require spinal fusion after growth is completed. The use of magnetic growth rods is relatively new, and it has been developed to improve the traditional growing rod procedures. It normally requires no follow-up surgery after initial implantation surgery.
Another option is growth-guided devices, here the spine is left to grow on its own after the initial procedure. As the child grows, the spine elongates along the rod. The device is removed at the end of growth.
Spinal fusion uses metal implants, rods and bone grafts to fuse as few segments of the spine as possible. These implants and rods are used to hold the spine in place until it can fuse itself. Over a period of about 12 months, the bone graft fuses (grows together) with the existing bone in the spine and forms a solid column of bone in that area. The instrumentation is no longer needed at this point but is usually left in place. This is the tried-and-tested surgery usually offered by the NHS.
Adolescent Idiopathic Scoliosis (AIS) is the most common type of scoliosis.
Of course, there is always the option to do nothing. However, when the curve reaches a greater degree -normally around the 50-degree mark- there is an increased likelihood of the curvature continuing to grow, even if the patient has completed growth. Year-on-year this often compounds, along with becoming uncomfortable it could become dangerous as there is a potential risk to organs such as the lungs and heart. This is uncommon, and seen in cases with a degree of curvature normally over 100-degrees (a few are affected when over 70-degrees). In the right care a patient shouldn’t reach this stage. Our family is grateful to have a wonderful team supporting us all as we head into the next stage, spinal fusion. Understandably, my daughter has some trepidation about the procedure but is keen to get it done. Luckily, it’s only her thoracic spine that will require fusion as the lumbar spinal curve has been determined to be compensatory. The majority of her flexibility will be preserved—phew!
What can you do?
Progression can be very swift, especially with Adolescent Idiopathic Scoliosis (AIS) as it coincides with the growth spurt. Naturally, teens become more private with their bodies and caregivers see their shape less under baggie-hoodies and layers. Summer is often the time a parent or carer notices something doesn’t look quite ‘right’. In my daughter’s case it was the start of summer and I noticed something different when we were swimming on holiday.
Early intervention is recommended
Above is a very simple forward-bend test you can do at home, and markers show you what to look for. You could do this check on your teen monthly or quarterly.
If something looks ‘off’, see your GP. Early intervention is recommended. Most cases remain mild and a wait-and-watch approach is appropriate, some cases require bracing, and a small percentage go on to require surgery.
Whether it’s a wait-and-watch approach, bracing or surgery, all benefit from muscle-strengthening, not to correct or halt progression but to prevent or lessen pain by strengthening and retraining muscles. I use a number of techniques and tools including; balls; yoga bricks; Pilates; yoga postures (āsanas); and breathing practices (prāṇāyāma), depending on the client's need and preference. Being consistent with exercise is important; when so much feels out of control this is an area where ownership can be claimed – improvements in strength and self-confidence make it all worthwhile. I always say, “do what you can do, the rest isn’t up to you”.
So that's an overview of what scoliosis is and some treatments available. To get a better picture of the lived-experience search #scoliwarriors or #scoliosiswarriors (especially on Instagram) to read personal stories of people at all ages and stages -- they're so inspiring and full of support for the community.
"I see you beautiful #scoliwarriors, and your families. You’re all titanium, rods or not!"
(Please consult with your medical team before starting a new practice.)