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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Spina Bifida

Scoliosis can occur as a result of numerous other conditions, such as neurofibromatosis and Rett syndrome. We’ve looked at many of these conditions here on the Scoliosis SOS Clinic blog, and today, we’re going to talk about another underlying condition that can lead to the development scoliosis: spina bifida.

 

What is spina bifida?

Spina bifida is a condition that arises when there is an issue with the development of the neural tube, causing a gap in the unborn child’s spine. The neural tube starts to grow during the early stages of human development in the womb; it eventually becomes the spine and nervous system. When something goes wrong during this process and the tube develops incorrectly, the consequence of this is called a neural tube defect. Spina bifida is a type of neural tube defect.

Spina bifida is caused when the arches of bone that surround the spinal canal don’t fully close. In most cases of spina bifida there will only be a gap in the bone arch, but in some cases the spinal cord itself does not form correctly either, causing severe repercussions. The exact cause of this condition is unknown, but there are a few things – a lack of folic acid, taking certain medication during pregnancy, genetic conditions like Patau and Down’s syndrome – that do increase the chances of a child being born with spina bifida.

There are three types of spina bifida:

Spina Bifida Occulta – This is the most common and least severe type of spina bifida. The opening of the gap in the spinal arches is very small and covered in skin, stopping the spinal cord and membranes from pushing out. Cases of spina bifida occulta usually aren’t accompanied by a noticeable bulge in the back.

Myelomeningocele – This is the most serious form of spina bifida. Individuals with this type of spina bifida will have a sac in their back; this happens because the spinal cord and the protective membrane surrounding it protrude through the opening in the spinal arches. People that suffer from myelomeningocele spina bifida may be at risk of significant damage to the spinal cord and infections of the nervous system. Although this isn’t the most common type of spina bifida, this is very often the form of the condition that people are referring to when they talk about spina bifida.

Meningocele – Similar to the above, except only the protective membranes protrude out of the opening in the spine (not the spinal cord itself). The spinal cord and nervous system are left intact, so this type of spina bifida can usually be corrected via surgery, with no further treatment required.

Types of Spina Bifida

In the majority of cases, surgery can be carried out to close the opening in the spine, but damage to the nervous system may well already have taken place. The damage to the spinal cord can lead to bladder and bowel control problems; leg weakness and paralysis; and scoliosis (a sideways curvature of the spine).

 

Treating scoliosis in spina bifida patients

If you or a loved one have developed scoliosis as a result of spina bifida, you’ll be pleased to know that we can treat it without you being required to wear a brace or undergo spinal fusion surgery. Here at Scoliosis SOS, we treat scoliosis sufferers using a treatment programme called ScolioGold. This is a combination of exercise-based techniques that has proven effective in reducing the patient’s Cobb angle, improving mobility, and reducing any pain that the spinal curve may be causing.

Click here to find out more about our ScolioGold courses, or get in touch to arrange an initial consultation with our scoliosis specialists.