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Sacral Agenesis
and Back Pain

Sacral Agenesis means a congenital deformity of the sacral area (the lower part of the back just above the coccyx or tailbone). It is a very uncommon disorder.
It is sometimes called ‘hypoplasia of the sacrum’, but has not been entirely proven that the cause is a maternal lack of folic acid, or other nutritional deficiencies.

The area of the spine which is affected usually develops half way through the first trimester of pregnancy, so experts think that this deformity develops in the 4th-6th week of foetal growth.

There are different types of sacral agenesis where the irregularity can be a partially formed sacrum on one side, a two-sided deformity or even a total non-existence of the sacrum.

During the recent years a foetal scan during pregnancy is used to diagnose these deformities. Parents may then be offered a range of options in order to deal with the pregnancy.

Before the use of scans become common, sacral agenesis was noticed at birth after the child had its first physical examination. Once a diagnosis has been suggested, an X-ray is then performed to confirm the diagnosis and a treatment plan can be drawn up.

Sometimes the bowel and/or bladder function are interfered with now and again, with total incontinence. Ways to control this have to be planned as soon as possible.

Many sufferers have minor irregularities in their hips, knees, legs and ankles, sometimes, though not very often, there is a need for amputation to attain a better quality of life.

Sometimes the lower body can be short of motor functions and mobility lessened. Sacral agenesis can cause on the whole, instability in the spine/pelvis and this is linked with scoliosis and hip dislocation, which is why as soon as it is discovered it should be addressed to.

Treatment of Sacral Agenesis

Even though the actual deformity cannot be treated, the consequences of suffering this disorder can be treated. As mentioned before, an appropriate continence control system can be designed for each individual to assist with acquiring an improved quality of life. Some sufferers of sacral agenesis have a tethered spinal cord that can now be treated surgically; it may contribute to having greater continence control. Ask a specialist for a referral to discuss this choice with you.

Some sufferers may need counselling or therapy, especially during the teenage years. Support groups can let people express themselves without feeling like they are being judged by others, plus they gain a sense of understanding and belonging from other sufferers.

Children should be told about their condition as soon as possible, though you should be careful not to make an issue of it. This will help them come to terms steadily with the deformity, particularly if they are involved with making decisions about their own health.

Everyone manages their medical problems in their own way, luckily these days there is a variety of therapeutic sessions and counsellors that can help sufferers with any question they may have.

Sacral agenesis is a deformity which develops before birth. Fortunately it has a low occurrence rate and there is no reported link to genetic predisposition.
Medical research is being developed everyday, so hopefully there will be a better understanding of its causes in the future, as a result hopefully its prevention.

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