Spina bifida is typically diagnosed during pregnancy or immediately after birth. But a mild form of spina bifida, which rarely causes symptoms, can go unnoticed until adulthood.
Spina bifida is a spinal condition that can affect movement, balance, coordination, and control of the lower body.
Healthcare professionals commonly diagnose it during pregnancy. But a mild form of spina bifida, called spina bifida occulta, may go unnoticed until adulthood.
This happens because spina bifida occulta doesn’t typically cause symptoms. Many people who have it never receive a diagnosis.
Spina bifida occult is very common. Experts estimate that as many as 20–30% of people have this form of spina bifida.
This article takes a closer look at spina bifida occulta, including when it’s typically diagnosed, symptoms, and treatment.
What are the three types of spina bifida?
- Myelomeningocele: Myelomeningocele is the most severe type of spina bifida, and it’s the type most people think of when they think of the condition. Myelomeningocele causes serious spinal cord and nerve damage from birth. It happens when a fluid sac comes through an opening in the back.
- Meningocele: Meningocele causes minor disabilities. In this type of spina bifida, a fluid sac also pushes through the back, but it doesn’t contain the spinal cord and causes little to no nerve damage.
- Spina bifida occulta: Spina bifida occulta is also known as “hidden” spina bifida. People with this condition have a small gap in their spine, but there is no fluid sac. It’s rare for this type of spina bifida to cause nerve damage or disability.
Healthcare professionals often diagnose spina bifida during the mid-pregnancy scan. They typically run this test between the 18th and 21st week of pregnancy. Sometimes, doctors diagnose spina bifida after birth.
But, because spina bifida occulta doesn’t cause a sac to push out of the spine or symptoms, further delays in diagnosis are common.
Typically, doctors spot this type of spina bifida after an adolescent growth spurt. The growth spurt stretches the spine and exposes the small gap.
Many people still don’t experience any symptoms. But the expansion of the spine makes the gap visible on X-rays and other imaging tests.
Spina bifida occulta rarely causes symptoms. When it does, symptoms in adolescents and adults can include:
- a lump or red mark on the back
- back pain
- difficulty with bowel control
- weakness in leg muscle
- spine curvature
Adults with other types of spina bifida can have more severe symptoms. These symptoms can vary widely from person to person.
Difficulty with balance, walking, and bowel and bladder control are all common. More symptoms experienced by adults and adolescents with spina bifida include:
Treatment for spina bifida occulta depends on symptoms. People without symptoms often don’t don’t need any treatment. When symptoms do occur, treatment will focus on relieving them.
Treatments can include:
- medication to help manage back pain
- laxatives to ease bowel symptoms
- muscle relaxants that can help relax bladder muscles
- physical therapy to build back muscle and stability
- occupational therapy to teach skills for daily self-care
- mobility aids such as canes, walkers, and wheelchairs
- adaptive equipment such as handrails or shower benches in the home
Surgery might be the best treatment option for some adults with spina bifida occulta.
This is typically true for people whose spinal cords are attached to their spinal colon. This is called tethered cord syndrome.
Healthcare professionals sometimes diagnose it in adults and adolescents as a result of spina bifida occulta. Surgery can release the tension in the spinal cord and relieve symptoms.
Spina bifida is a chronic condition and there’s currently no cure. But when spina bifida isn’t diagnosed until adulthood, it’s generally because it’s very mild with minimal symptoms.
You can typically manage this type of spina bifida through treatment and is unlikely to affect lifespan.
Healthcare professionals commonly diagnose spina bifida during pregnancy or immediately after birth. But the mild form of spina bifida, spina bifida occulta, can go unnoticed until adulthood.
This form of spina bifida rarely causes symptoms. When it does, symptoms are mild and you can manage it with treatment such as:
- pain medications
- medications for bowel and bladder control
- physical and occupational therapies