Spina Bifida Occulta				                                    is usually innocent and does notWhy do some people have       ...
of a stretched or tethered spinal cord    or may not be present at birth andneed to have an operation on their        may ...
For those with the more complicated      Women who know they have spinaspina bifida occulta, and therefore      bifida occ...
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Spina bifida occulta


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This is a mild form of spina bifida which is very common. Estimates vary but between 5% and 10% of people may have spina bifida occulta.

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Spina bifida occulta

  1. 1. 42 Park Road Peterborough PE1 2UQ 01733 555988Spina Bifida OccultaWhat is Spina Bifida? whatsoever. Often people only become aware that they haveSpina bifida (meaning split spine) is spina bifida occulta after havinga fault in the spinal column in which a back x-ray for an unrelatedone or more vertebrae (the bones problem.which form the backbone) fail toform properly. This leaflet is about However, for a few (about 1 inthe “hidden” form of spina bifida 1,000) there can be associatedcalled spina bifida occulta. For problems.information on other forms of spina The outer part ofbifida, see Shine’s information the vertebrae issheet number ‘What is Spina not completelyBifida’. joined. The spinal cord andWhat is Spina Bifida its covering (theOcculta? meninges) are undamagedThis is a mild form of spina bifidawhich is very common. Estimates Hair (or dimple)vary but between 5% and 10% often at site ofof people may have spina bifida defectocculta. SkinIt must be emphasised that,for the vast majority of thoseaffected, having spina bifidaocculta is of no consequence
  2. 2. Spina Bifida Occulta is usually innocent and does notWhy do some people have usually indicate an underlying spinacomplications? bifida occulta.The term ‘spina bifida occulta’ is, For people with spina bifida occulta,in fact, not one but two separate there may be associated difficultiesconditions which have completely which may include: foot deformity,different consequences. This leads weakness and reduced sensationto confusion when such a diagnosis of the legs, change in handis used without qualification. function, bladder infections and incontinence and bowel problems.For the majority of people withspina bifida occulta, it is a minor These problems arise becausefault involving one vertebra in the the spinal cord becomes tetheredlower back. The unfortunate use to the backbone. Often a childof this term for such a minor fault who is previously symptomlesscan lead to distress for the person may experience difficulties duringconcerned. However, it should be the rapid growth of adolescence.considered as insignificant, both for This is because the nerves ofthat person and his or her children. the spinal cord are stretched and the symptoms may becomeFor a small number of people with progressively worse.spina bifida occulta the fault ismore extensive. Either the split in It is important to consult a GP,the spine is bigger, or may involve who, if appropriate, can refer to atwo or more vertebrae. There may neurosurgeon. Specialist scanningbe visible signs on the skin such procedures such as MRI (magneticas a mole or naevus (birthmark), a resonance imaging) give a cleardimple or sinus (hole), or a patch of picture of the nerves and spinalhair. If these are positioned above column and the neurologist willthe level of the buttocks and in the be able to advise on the mostmidline (centrally) there may well be appropriate treatment.a significant underlying spina bifidaocculta. A dimple or sinus that People with spina bifida occulta andis below the level of the buttocks progressive (worsening) symptoms
  3. 3. of a stretched or tethered spinal cord or may not be present at birth andneed to have an operation on their may be progressive. Those withlower spine to release the tension in significant spina bifida occulta havethe spinal cord. This is often a fairly a risk, higher than in the generalsimple and effective procedure, population, of having children withbut occasionally the operation is spina bifida which could be cysticavery complicated and involves a or occulta. This risk is between 2%(2% - 5%) risk of failure. It is often and 4% and is the same risk thatpossible to improve symptoms in those with spina bifida cystica havethe legs with this operation, but it of passing on the rare for bladder function to returnto normal. The main purpose of a However, the risk of having a“detethering operation” is to stop baby with spina bifida can beany further deterioration in leg or dramatically reduced by taking folicbladder function and it is important acid (a B-group vitamin).that a neurosurgical assessment ismade as early as possible after the Reduce the risk of having aonset of symptoms. The operation baby with spina bifidais probably best done by thoseneurosurgeons who have a special The non-significant form of spinainterest in the condition. bifida occulta carries no more risk of having children with spina bifidaWhat are the implications? than that for the general population. However, the GovernmentFor the vast majority of people recommends that all womenwith the non- significant form of of childbearing age take a dailyspina bifida occulta, there are no supplement of 0.4mg of folic acidknown complications and there is for one month before conceptionno higher risk of having children and for the first three months ofwith spina bifida than there is in the pregnancy as well as eating a dietgeneral population. rich in folic acid. This is because in the majority of cases, where a babyFor those with the more complicated is born with spina bifida, there is nospina bifida occulta, there may be family history of the disability.neurological problems which may
  4. 4. For those with the more complicated Women who know they have spinaspina bifida occulta, and therefore bifida occulta and are planning toan increased risk of having children have a baby can ask for a referral towith spina bifida, it is necessary to a geneticist who will consider bothtake a higher daily dose of folic acid the family history and individualfor the same period. This 5mg tablet medical circumstances and adviseis available only on prescription. on the risk of having a baby with spina bifida.More information and advice Shine’s national and regional staff, area and specialist advisers willIf someone suspects that they give personal advice and supporthave occult spina bifida and is whenever possible.experiencing any of the problemsdescribed above, they should asktheir GP for referral to a neurologistwho can investigate and adviseabout treatment.Help usShine relies on people’s generosity and support so we can help our clientswho depend on us for help and advice - people with hydrocephalus,spina bifida, their families and carers. To donate to Shine please or call 01733 421329.This information has been produced by Shine’s medical advisers andapproved by Shine’s Medical Advisory Committee of senior medicalprofessionals.Shine - Registered charity no.249338To see our full range of information sheets and to find out how to donateto Shine please visit