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Spina Bifida in Adults: What You Need to Know

November 16, 2023

Spina bifida is a complex condition that affects every individual differently. According to the American Association of Neurological Surgeons:

"Spina bifida is the most common, permanently disabling birth defect. The Spina Bifida Association conservatively estimates that there are 70,000 people living in the United States with the condition."

What Is Spina Bifida?

Spina bifida, a congenital birth defect, is categorized into three forms:

  1. Spina bifida occulta
  2. Meningocele
  3. Myelomeningocele

Spina bifida occulta, or "hidden spina bifida," is the mildest form, often unnoticed and asymptomatic. Meningocele involves an evident lump or sac on the back while myelomeningocele is the most severe, characterized by an open lesion along the spine where the spinal cord and nerves are vulnerable to damage and infection.

Some adults who have spinal bifida require home care services to ensure they're leading the best possible quality of life.

Let's talk about the basics of spinal bifida in today's blog.

Can you develop spinal bifida later in life?

Spina bifida is a congenital birth defect that is often diagnosed in utero or shortly after birth because it presents with visible symptoms (i.e., the spinal cord is exposed and requires surgery). 

However, there is a percentage of spina bifida cases that are hidden, known as spina bifida occulta. These can go undiagnosed until later in life. To put it simply, although spinal bifida cannot be developed later in life, it can certainly be diagnosed later in life. 

What are spina bifida occulta symptoms in adults?

Columbia's Neurosurgery department reports that the most common spina bifida occulta symptoms in adults include: 

  • Foot deformity
  • Leg weakness, numbness, or clumsiness
  • Bladder or bowel dysfunction
  • Hand weakness or numbness

How is spina bifida diagnosed in adults?

Unless someone has experienced symptoms attributed to their spinal bifida occulta, they probably don't know they have it. In these cases, the condition can be discovered during an imaging procedure for another condition. 

What happens to adults with spina bifida?

If an adult has spinal bifida occulta and is diagnosed later in life, there is a good chance that no additional treatment is necessary. However, because this condition ranges from very mild to severe, there is a wide range of outcomes. 

Adults may experience the following symptoms:

  • Advanced aging
  • Spinal cord tethering
  • Bowel changes
  • Orthopedic issues
  • Loss of skin sensation
  • Other conditions like latex allergy and sleep apnea

There are also high rates of obesity, and some women with spina bifida might face complications during pregnancy.

If spina bifida is diagnosed at birth or in early childhood, surgery is normally the best course of action; otherwise, more severe complications are likely to occur, such as life-threatening infections. 

For those living with spina bifida, coping with the condition entails a life-long journey. Depending on the complexities of the surgery(ies) and how severe the condition was to begin with, some people experience a few physical limitations, others experience paralysis, and still others have no long-term effects. Many kids and adults who have spina bifida will also need physical and occupational therapy to adjust to their physical limitations. 

How long can adults live with spina bifida?

According to the University of Utah Health: 

"It's possible to obtain a normal-to-average life expectancy with frequent, thorough, and appropriate care. Your treatment team will help carefully prescribe your care to manage symptoms and avoid worsening conditions."

While every individual's experience with spina bifida varies, most can lead active lives with the right care, support, and awareness. Home care services can be part of this plan! 

Stay Connected to Best Care

At Best Care, we are here to help with all your questions about caring for adults with spina bifida because we believe that even the toughest journeys can be made smoother with compassionate, informed caregiving. You can get in touch with us today to learn more about personal care assistant (PCA) services or browse our library of caregiving resources

Be sure to subscribe to our podcast for more caregiving tips and information.

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