For Families and Carers : Neck Instability

This is  a subject that sometimes causes worry for parents and professionals alike. Callers to our Helpline quite often ask whether or not children should take part in particular physical activities such as trampolining.

As far as we can be aware, few sporting injuries have ever been reported in people with Down’s syndrome that could have been caused by neck instability

Some terminology

You may hear health professionals, when they are talking about neck problems, using the terms ‘cervical spine’ (this just means the neck), ‘craniovertebral’ (this refers to the joints at the top of the spine and at the base of the skull) and ‘subluxation’ (slippage).

Why do some people with Down’s syndrome have neck instability?

The joints at the top of the spine and at the base of the skull allow us to shake and nod our heads. In people with Down’s syndrome, the ligaments, tissue that connects one bone to another bone thus holding a joint together, are stretchier. So joints may be looser and more flexible which can lead to slippage of the vertebrae; these are the bones that surround and protect the spinal cord.

Problems can develop if a vertebra slips too far and puts pressure on the nerves in the spinal cord. This can be a gradual process or it can happen if a person is jolted suddenly such as when a whiplash injury occurs. In people with Down’s syndrome, the most common place for this slippage to happen is at the first and second vertebrae of the neck (known as ‘atlanto-axial instability’). Similar problems can also occur between the base of the skull and the atlas vertebrae (known as ‘atlanto-occipital instability’) although this isn’t as common as atlanto-axial instability. These two conditions are collectively known as craniovertebral instability.

What should I look out for?

Sudden dislocation of the neck probably occurs more commonly in people with Down’s syndrome than in the rest of the population although it must be stressed that it is still very rare.  Evidence would suggest that people gradually develop certain symptoms before dislocation takes place.

These are the symptoms you need to look out for:

  • Pain at a spot near the hard bump behind the ear
  • A stiff neck which doesn’t get better quickly
  • Unusual head posture
  • Changes in the way a person walks so that they may look unsteady on their feet
  • Change in a person’s ability to manipulate things with their hands

If you notice any of these symptoms in the person you care for/support they should be taken to see a doctor. If symptoms occur suddenly, an emergency appointment is needed. There may be reasons for these symptoms other than neck instability but it is better to be safe than sorry. Don’t’ be fobbed off by the symptoms being explained away by the phrase ‘it’s because they have Down’s syndrome’.  You should always expect health professionals to take your concerns seriously. If the doctor believes, after a full examination, there is evidence that there may be a problem with the neck they will arrange for an x-ray or scan of the upper spine.

Are some activities more risky for people with Down’s syndrome?

If a person with Down’s syndrome does not have any of the symptoms already discussed, there is probably no reason for worry about them taking part in everyday routine sporting activities. However, no activity is risk free and so we have to be aware of the risks and make an informed decision about taking part in an activity. It’s a balancing act involving a decision about what is acceptable risk to you and a compromise between a person’s freedom to take part being weighed up against protecting them from possible injury.

There are sports (e.g. trampolining, gymnastics, boxing, diving, rugby and horse riding) that may carry with them more of a risk just as they do for anyone. Prior to taking part in such activities, it is strongly advisable to ask a GP, paediatrician or chartered physiotherapist about the increased chance of atlanto-axial instability occurring following participation in these sports. Some sports, such as gymnastics, require participants to complete a screening test before they are able to participate in the sport. (This section is currently being updated, please contact the DSActive team or call the Helpline if you have any questions 0333 1212 300).

There are no reliable screening tests to help us to predict those who might subsequently go on to develop a problem with their neck. This is why we all have to be aware of the warning signs that indicate that a person might be at risk of neck dislocation. If there is greater awareness, then people are more likely to consult with a doctor before any permanent damage happens and early treatment can take place.

There is further information about neck instability in our booklet for parents and carers which can be downloaded here. There is information for GPs about neck instability on DSA’s website here. You can call our Helpline if you have any questions about the issues discussed in this blog.

Finally a repeat message:  Sudden dislocation of the neck probably occurs more commonly in people with Down’s syndrome than in the rest of the population although it must be stressed that it is still very rare.

The information provided here is not intended as professional medical advice and should not replace the advice of your doctor or healthcare practitioner

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