Living with neurofibromatosis can be challenging enough in itself, but unfortunately, this is one of the many conditions that can lead to the onset of scoliosis.

In this post, we'll take a look at neurofibromatosis, how it is linked to scoliosis, and what can be done to treat a spinal curvature when it develops.

What is neurofibromatosis?

N.B. Strictly speaking, there are two different forms of neurofibromatosis: type 1 (NF1) and type 2 (NF2). NF1 is by far the more common of the two, and from here on out, we will be using the word 'neurofibromatosis' to refer specifically to NF1.

Neurofibromatosis (sometimes known as Von Recklinghausen's disease) is a genetic condition that causes tumours to grow on the coverings of the body's nervous system. The tumours are almost always benign, but as the patient reaches adolescence and approaches adulthood, they tend to manifest themselves in the form of visible lumps and bumps on the skin.

Neurofibromatosis

These bumps - which vary greatly in size and visibility from one patient to the next - are the most characteristic and recognisable symptom of neurofibromatosis, but the condition is also associated with a range of other problems as well, including:
  • Learning disabilities
  • ADHD and other behavioural conditions
  • High blood pressure
  • Impaired vision
  • Scoliosis (curvature of the spine)

What causes neurofibromatosis?

Neurofibromatosis is caused by the mutation of a specific gene that is responsible for controlling cell division in the human body. This can happen spontaneously, although the mutated gene can also be passed from parent to child (meaning that some - but not all - cases of neurofibromatosis are hereditary).

Neurofibromatosis affects roughly 1 out of every 3,000 babies born each year. The condition can be found in people of all races and sexes; interestingly, the condition can be detected in the womb via genetic screening tests, although the majority of NF1 sufferers aren't diagnosed until the classic symptoms (bumps and coffee-coloured patches on the skin) begin to develop further down the line.

Scoliosis in NF1 patients

Whereas a person with idiopathic scoliosis (that is, scoliosis with no apparent underlying cause) usually won't develop a spinal curve until they reach adolescence, a neurofibromatosis sufferer may well develop scoliosis during their childhood. In fact, roughly 10% of children with NF1 are also affected by scoliosis.

When neurofibromatosis does result the onset of scoliosis, it seems to happen because of benign tumours growing on the spinal cord. This leads to an overall weakening of the spine, which in turn can lead to the growth of a scoliotic curve.

Treating scoliosis in neurofibromatosis sufferers

Scoliosis that arises as a result of NF1 can generally be treated using the same methods as idiopathic scoliosis. Surgery may be recommended, as may the use of a back brace to halt the progress of the spinal curve. Since the spine tends to start curving at an early age when neurofibromatosis is the underlying cause, medical practitioners may even recommend simply waiting and monitoring the condition to see if it improves or deteriorates with growth.

The ScolioGold treatment courses that we deliver here at the Scoliosis SOS Clinic represent another effective treatment option and a far more appealing alternative to surgery in many cases. We have treated numerous patients with NF1 (including several children), and the results have been consistently impressive.

ScolioGold therapy uses a combination of proven techniques to combat the symptoms of scoliosis without the need for surgery or bracing. This exercise-based treatment programme can relieve pain, improve mobility, and reduce the angle of the patient's spinal curve - click here to view upcoming course dates, or contact us now to arrange an initial consultation.