International Federation for Spina Bifida

Friday 25 October 2019 is World Spina Bifida and Hydrocephalus Day. This year also marks the milestone 40th anniversary of the International Federation for Spina Bifida and Hydrocephalus.

What is Spina Bifida?

To mark this occasion, we'd like to share the story of Samantha Joyce, a Scoliosis SOS patient who has spina bifida as well as scoliosis.

 

Patient Story: Samantha from Sidcup

Samantha is a woman from Sidcup, Greater London who got in touch with the Scoliosis SOS Clinic after our recent appearance on BBC One. She was diagnosed with scoliosis at 11 years old; she also has spina bifida and hydrocephalus.

Samantha was prescribed a scoliosis brace, and when she was 13, surgeons placed screws in her spine in order to correct her spinal curve. Unfortunately, this operation did not have the desired effect - after a long and arduous recovery process, Samantha had to have the screws removed at the age of 18 because they had caused an abscess and she had lost the use of her left leg!

Samantha is now in her 40s, and she was still experiencing back pain as a result of her scoliosis and her spina bifida. She came to the Scoliosis SOS Clinic in the hope that our therapists would be able to help her - watch the video below to find out how she got on.

Feedback from Samantha

"Thank you all so very much for all you have done. I'm so glad I found out about this clinic and had the opportunity to experience the wonderful work you do.

"It's amazing how I have changed since I started: pain-free, more definition in my legs, and my whole body feels freer. A friend said, without prompting, how much straighter I was sitting, and I'm able to sit and stand for longer without any pain.

"I have now been discharged from King's College Hospital after a year and a half. Thank you for being a valued part of my recovery, and keep up the fantastic work you do - it's invaluable!"

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Osteogenesis imperfecta

The phrase osteogenesis imperfecta may look like a mouthful, but there's a chance you may be familiar with this condition under a different name.

Osteogenesis imperfecta (OI) is commonly known as brittle bone disease: a genetic condition that prevents adequate production of collagen, resulting in under-developed bones that are naturally more susceptible to fractures.

According to the Osteogenesis Imperfecta Foundation, osteoporosis is an almost universal consequence of this (learn about osteoporosis here). Sadly, it's not the only possible consequence that people with OI sometimes have to deal with.

 

The relationship between osteogenesis imperfecta and scoliosis

While the likelihood of being diagnosed with both osteogenesis imperfecta and scoliosis is extremely rare (0.1 in a million), it's far from an impossibility. In fact, many within the medical community theorise that there is a relationship between the two conditions.

It's believed by some medical professionals that OI can actively contribute to the development of scoliosis. As such, the chances of developing scoliosis are, in theory, likely to increase marginally if you already have OI.

 

Scientific studies on OI and scoliosis

Findings presented by James J. McCarthy at the American Academy of Orthopaedic Surgeons' 74th Annual Meeting in 2007 appeared to confirm this theory. The study focused on childhood OI in particular, and was carried out retroactively.

Of the 288 osteogenesis imperfecta patients studied, 83 were later diagnosed with scoliosis. This represented a 28.8% incidence of scoliosis in existing OI sufferers. What's more, those who underwent corrective surgery for their scoliosis had a high rate of complication.

Meanwhile, a further study published in the Journal of the American Academy of Orthopaedic Surgeons in 2017 noted that, while scoliosis is rarely discovered in OI patients under six years old, it can progress rapidly thereafter.

The journal went on to note that the most common type of scoliosis curve found in OI sufferers was a single thoracic curve (present in 97% of scoliosis patients with type I OI). Meanwhile, 58% of scoliosis patients with type III OI had curves in the thoracic region.

Healthy bone vs brittle bone

Treating scoliosis patients with osteogenesis imperfecta

Due to the fragility of OI patients' bones, scoliosis treatment can be tricky. Manoeuvrability may be limited, and stress placed on the bones could prove to be dangerous.

What's more, younger patients may also exhibit confidence issues and lack of trust in treatment providers, particularly if they have suffered multiple bone fractures in the past.

Here at the Scoliosis SOS Clinic, our aim is to provide safe and effective non-surgical treatment for people with scoliosis. For those who also suffer from osteogenesis imperfecta, our ScolioGold programme is a fantastic way of treating the symptoms of scoliosis without aggravating the symptoms of OI.

From muscular imbalance and trunk rotation to breathing and posture improvement, our specialist treatment courses (led by trained professionals) can be truly life-changing for those who have both OI and scoliosis. The treatment can even be modified to involve fun, interactive exercises for younger patients.

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Scoliosis and Menopause

Menopause usually occurs between the ages of 45 and 55, although it can come earlier or later. Symptoms of the menopause can be quite unpleasant at times; many women experience hot flushes, night sweats and depression (to name a few).

The arrival of the menopause also tends to trigger a loss of bone density. This is known as osteoporosis, and unfortunately, it can increase your risk of developing a curvature of the spine - especially if you already had bad postural habits.

Retaining your bone strength

There are a few ways to slow down the rate at which your bones weaken once you've reached menopause. The NHS recommend:

  • Exercising regularly
  • Eating a healthy, nutrient-rich diet
  • Increasing your vitamin D levels (i.e. spending more time in the sun)
  • Stopping smoking
  • Reducing your alcohol intake
  • Taking calcium / vitamin D supplements

Treating your scoliosis

Even if you do all the things listed above, you may still find that your spine is developing a curve. The good news is that there are plenty of different treatment options that can help you to improve the look and feel of your back.

Read our Scoliosis Treatment in Adults blog to see some of the different treatment options that are available at this stage of life. Most often, you will be offered one or a combination of the following treatments:

  • Physiotherapy
  • Hydrotherapy
  • Pain Management
  • Spinal Surgery

What do we have to offer?

Here at the Scoliosis SOS clinic, we have treated lots of women who were suffering from adult degenerative scoliosis. Our exercise-based ScolioGold therapy programme is tailored to each patient's scoliosis curvature so that we can help them to achieve their specific treatment goals.

Our physical therapy courses may be able to:

  • Relieve pain in your back
  • Boost your mobility / flexibility
  • Reduce the visibility of your curvature

If you have any questions about scoliosis treatment, please feel free to get in touch with our specialist team, who will be able to advise you on the best course of action.

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Are you born with scoliosis?

Scoliosis can potentially occur at any stage of a person's life. Some people grow up with curved spines, while others develop scoliosis in their old age. Every scoliosis sufferer's story is different.

With that in mind, it should come as no surprise that there's no single, straightforward answer to the question we're discussing today: are you born with scoliosis?

Idiopathic scoliosis

By far the most common form of scoliosis is idiopathic scoliosis - that is, a sideways spinal curvature that occurs without any clear cause.

Idiopathic scoliosis usually doesn't develop until the pre-teen / teenage years, so it would be incorrect to say that one is 'born' with this type of scoliosis. However, idiopathic scoliosis is widely believed to be rooted in genetic causes, so it might be said that some people are born with the genes that will one day manifest as a progressive spinal curve.

Congenital scoliosis

While scoliosis most commonly occurs during adolescence, it is occasionally the case that a visible spinal curvature is present from birth. Babies born with scoliosis are said to have congenital scoliosis, a condition that occurs when the baby's spine doesn't develop properly in the womb. A baby with congenital scoliosis may have multiple vertebrae joined together, or one or more vertebrae that didn't form completely.

Scoliosis in later life

Even if you weren't born with scoliosis and you didn't develop a spinal curve during your teenage years, there's no guarantee that you won't be affected by scoliosis later in life. Scoliosis can occur in fully-grown adults for a number of reasons, including:

  • Asymmetric degeneration. The human body deteriorates with age, and if one side of your body deteriorates more rapidly than the other, this may result in a sideways spinal curve.

  • Osteoporosis, a loss of bone density that is most common in post-menopausal women (read about osteoporosis here).

  • Spondylolisthesis, where a vertebra slips out of place (read about spondylolisthesis here).

Here at the Scoliosis SOS Clinic, we treat scoliosis in patients of all ages, from young children to people in their 60s, 70s and beyond. If you would like to arrange an initial consultation, please fill out our enquiry form here.

who is affected by scoliosis

Unfortunately, scoliosis can affect anyone and may occur at any time of life for a variety of different reasons. However, the condition usually develops during adolescence and the majority of sufferers are female.

No one has a perfectly straight back - everyone’s spine is a little bit curved, and this causes no problems in most cases. Scoliosis is only diagnosed when the angle of curve exceeds 10 degrees.

So who is affected by scoliosis? This condition actually affects roughly 4% of the population, making it quite a bit more common than some people realise.

Most cases of scoliosis are diagnosed between the ages of 10 and 15. During this time, most teenagers are going through a growth spurt, and this is where scoliosis tends to become more pronounced. However, it is not clear why the condition affects more women than men (although multiple theories have been put forward). As mentioned above, scoliosis can affect a range of people for a range of different reasons, such as those listed below.

severe scoliosis

Causes of Scoliosis

Idiopathic – If the patient has no other health problem that might have caused their spine to curve, then they are said to have idiopathic scoliosis. This is the most common form of scoliosis, and while the cause is not known, it is thought to stem from genetic factors.

Ageing – While the majority of scoliosis cases are diagnosed early on in life, getting older also causes your body to change quite dramatically. Deterioration of the spine with age may result in a sideways curvature.

Health Conditions

Scoliosis can sometimes be caused by other health conditions. Unfortunately, those affected by the following conditions (among others) may also be affected by scoliosis:

Birth Defects – Although it is rare, sometimes the condition is present from birth. This happens when the baby’s spine doesn’t develop properly in the womb.

Muscular Dystrophy (MD) – This is a condition where the muscles weaken over time. This is a genetic problem that may eventually cause the spine to start curving.

Marfan Syndrome – A hereditary disorder where the body’s connective tissues deteriorate. This can eventually affect the spine.

Cerebral Palsy - This condition is associated with muscle weakness, and a weakening of the muscles around the spine can lead to scoliosis.

If you are worried that you might be affected by scoliosis, our expert team would be happy to talk to you and discuss your options. To book a consultation, please click here.