Spina Bifida in Adults 101: Types, Tests and Treatments

Living with spina bifida means navigating daily challenges, but understanding your condition is the first step toward better health.

Spina bifida is a type of birth condition that affects the spine. While commonly associated with babies born with spinal openings due to insufficient folic acid during pregnancy, some people have spina bifida without knowing it. 

For most people with spina bifida, treatment and management begins in early childhood. Others may only learn of their condition in adulthood. This guide to spina bifida in adults will cover what you can expect with spina bifida — regardless of type — including symptoms, types of treatment, and lifestyle modifications to help improve or maintain your quality of life. 

What is spina bifida?

Babies with spina bifida are born with an area of the spinal cord exposed on their back. The condition occurs when part of a baby’s spinal cord doesn’t fully close during the third and fourth weeks of pregnancy.  

“In adults, the condition can lead to complications such as muscle weakness, mobility challenges, orthopedic deformities, and in some cases, incontinence or neurological issues,” explains Kieran Sheridan, a physiotherapist and founder of GulfPhysio, a physiotherapy supply company.

About 1 in 2,875 people are born with spina bifida in the United States annually. According to the Spina Bifida Association, an estimated 70,000 people live with spina bifida in the U.S., but this number may be higher because some types aren’t always apparent.¹ 

The mildest and most common form, spina bifida occulta, often goes undetected and occurs when the bones of the spine don’t properly form but the spinal cord and nerves remain intact. Many people with this form have no symptoms and discover it only through routine X-rays.

Those with more severe forms of spina bifida are living longer than in past years due to advances in medical care. According to one 2023 study, “the median age at death for patients with spina bifida increased 36.6 percent, from 41 years of age in 2011 to 56 years of age in 2022.”

Types of spina bifida

There are three common types of spina bifida, based on severity.² Spina bifida occulta is a closed form without an opening or defect on the back. Meningocele and myelomeningocele are open types, meaning there’s an opening in the back with a fluid-filled cyst. 

Spina bifida occulta

According to the Centers for Disease Control and Prevention (CDC), spina bifida occulta (SBO) — the most mild form — is also known as “hidden” spina bifida because it often isn’t discovered until late childhood or adulthood.² People with SBO don’t have spinal cord and nerve damage and often don’t have any symptoms.

Meningocele

Meningocele — the rarest form of spina bifida — occurs when a fluid sac pushes out through an opening in the back. This form of spina bifida is present from birth.^1,2 Most people with meningocele won’t have nerve damage or spinal cord problems. They likely experience only mild symptoms. 

Myelomeningocele

When people hear “spina bifida,” they usually refer to myelomeningocele — the most severe and common form.¹ The fluid sac contains a section of spinal cord and nerves and pushes out through an opening in the back.^1, Unlike meningocele, people with myelomeningocele have spinal cord and nerve damage, which can cause more serious complications such as seizures and leg paralysis.^2.15 

About 70 to 90 percent of people with myelomeningocele also have fluid in the brain where the spinal cord can’t drain properly. This can cause swelling and pressure, leading to brain damage if not treated.⁴ 

What causes spina bifida?

Doctors aren’t sure why some people develop spina bifida, but research suggests your genes and the environment play a role.¹ However, the American Association of Neurological Surgeons says 95 percent of people with spina bifida don’t have a family history of the condition.¹ 

Additional research suggests certain factors might increase the chances of developing spina bifida during pregnancy, including insufficient folic acid, having a history of seizures, and uncontrolled diabetes.^1,2

Spina bifida symptoms and complications

Spina bifida symptoms depend on the location and severity of the spinal cord involvement.¹ Spina bifida can cause symptoms that can range from mild to severe, including:

• Muscle weakness
• Loss of sensation in the lower extremities
• Scoliosis, a condition where your spine curves to the side
• Joint deformities
• Chronic pain
• Skin issues, such as a hairy patch, fatty lump, or red or purple dark spot on the lower back

In addition to experiencing symptoms, you may also develop complications from spina bifida. Some complications that may occur include:

• Hydrocephalus (fluid on the brain). This complication can cause learning disabilities or epilepsy, a seizure disorder. Around 70 to 90 percent of people with myelomeningocele will also have hydrocephalus.⁴
• Meningitis, or a brain infection
• Leg paralysis
• Bowel and bladder problems, such as frequent urinary infections, which may occur when the lower part of the spinal cord is affected.¹

Living with spina bifida often brings emotional and mental health challenges such as anxiety, depression, and social isolation due to physical limitations and chronic pain. Because emotional symptoms are often overlooked, addressing mental health struggles is crucial. 

How to test for spina bifida

Most people with spina bifida received a diagnosis as infants. People with SBO might receive a diagnosis only if they’re getting an X-ray for another condition, which can reveal a small gap in the vertebrae (the bones of the spine).¹ Images may show irregularly formed spinal bones that developed before birth. According to the Spina Bifida Association, skin abnormalities such as a hairy patch or a red or purple spot on the back usually indicate SBO.⁵

Interventions to manage spina bifida in adults 

Spina bifida affects different areas of the body, requiring a team of health professionals to manage treatment. After diagnosis, people with severe symptoms might need surgery such as a laminectomy to relieve spinal cord pressure. For others, early physical therapy can help prevent future muscle and joint problems.

Treatment and therapy options for spina bifida in adults

If you have spina bifida, you may need medication to treat or prevent other health problems, including antibiotics for brain or bladder infections, laxatives or suppositories for constipation, oxybutynin to help relax bladder muscle spasms, and pain medication for back pain.

Surgery to close the defect often occurs during the first few days after birth. However, additional surgeries may be needed throughout life to prevent or treat complications such as scoliosis or foot abnormalities.

Surgery in adulthood — whether diagnosed as a child or with spina bifida occulta (SBO) — typically focuses on managing and preventing complications. Hydrocephalus, a common complication, is often treated by placing a shunt in the brain to help drain fluid and prevent pressure buildup. Ongoing surgeries may be needed to manage the shunt or address problems like infection.

Another common procedure is lumbar laminectomy to fix tethered spinal cords, which occur when the bottom of the spinal cord attaches to the spinal column. This can damage nerves due to stretching during growth. A laminectomy removes some spinal bones to relieve pressure on the spinal cord.

Other therapies

Besides medications and surgery, your care team might recommend other types of therapies. According to Sheridan, there are multiple therapies that can help manage spina bifida outside of medical and surgical options. These therapies include:

• Physical therapy (PT): Involves targeted exercises with a physical therapist to improve muscle strength, prevent joint deformities, and enhance mobility and flexibility.  PT in the water, known as aquatic therapy, eases pressure on joints.  
• Occupational therapy (OT): Helps improve fine motor skills and helps people adapt to daily activities such as dressing and using assistive devices. 
• Speech therapy (ST): Working with a speech therapist, ST can improve communication skills for those with developmental delays.  
• Psychological support: Mental health support by a psychologist, counselor, or therapist can help manage emotional challenges associated with spina bifida.

A comprehensive treatment approach combining these therapies often provides the best outcomes for people with spina bifida. Regular communication with your care team helps ensure treatments align with your changing needs and goals. Working closely with specialists can significantly improve quality of life and daily function.

Health and wellness strategies

Managing spina bifida effectively requires a combination of medical care and personal health strategies. Beyond regular medical appointments and prescribed treatments, there are several ways to take an active role in your care. Working with your healthcare team, you can develop personalized approaches to enhance your daily life and manage symptoms.

Staying active and mobile

“People with spina bifida can stay active by engaging in exercises that are low-impact and tailored to their mobility levels,” says Sheridan. This might include swimming, seated yoga, and resistance training using elastic bands. 

Getting regular exercise can also help maintain muscle tone and prevent stiffness or pressure sores on the skin from inactivity. It also improves your overall health and maintains muscle strength for daily activity. 

Mobility aids

Assistive devices — like canes, walkers, and wheelchairs — can help improve independence and reduce joint strain. Your medical provider can help you determine what’s most beneficial. They’ll write a prescription for insurance coverage. You can take these prescriptions to medical supply stores to obtain the devices. 

Bowel and bladder needs

The CDC says people with spina bifida can develop bladder infections or kidney failure earlier than those without the condition. Spina bifida often causes nerve damage to the bladder. Bladder problems can be managed by interventions like catheterization — inserting a flexible tube into the urethra to empty the bladder — when spinal nerves controlling these functions are affected.

“When urine remains in the bladder too long, it provides an ideal environment for bacteria to grow, which can lead to infections,” says Sheridan. “Many people with spina bifida use catheters to help empty their bladders, and without careful management, this can sometimes increase the risk of infection.”

Bladder problems affect 24 to 98 percent of people with spina bifida. Nerve damage can cause problems with bladder muscles, making it difficult to empty the bladder or control urination.

Because spina bifida causes nerve damage in the lower spine, it can affect the gastrointestinal tract, said Sheridan. This can cause difficulty with bowel movements, leading to constipation or bowel leakage. A nutritious diet rich in fiber — including fruits, vegetables, and whole grains — aids digestion. Adequate water intake helps prevent bladder infections.

In addition to dietary changes to prevent constipation, some people might need medications or, in severe cases, surgery. Meeting with a gastroenterologist, a doctor specializing in stomach and intestinal conditions, can help maintain regular bowel function through medications or routines that encourage regular bowel movements, according to Sheridan.

Working with a dietitian can help maximize benefits from dietary changes while managing spina bifida.

Planning for the future

Spina bifida can’t be cured, but it can be managed well into adulthood. About 50 percent of people in the United States living with spina bifida are adults. The following are ways to plan ahead and advocate for yourself. 

Family planning and pregnancy

According to the Spina Bifida Association, pregnancy is possible with spina bifida but can be more challenging. People with spina bifida should work with an experienced gynecology team knowledgeable in high-risk pregnancies. It’s also often helpful to work with a urologist — a doctor who specializes in bladder concerns — to monitor kidney function during a pregnancy. A neurosurgeon can also help monitor your shunt to make sure it’s operating properly, isn’t blocked, and shows no signs of infection.¹⁴

Taking folic acid during pregnancy can help reduce the chances of having a baby with spina bifida by 70 percent. Women with spina bifida should take four mg of prescription folic acid daily — about 10 times the dose for someone without spina bifida.¹⁵ 

Accessing resources and support

In addition to the above therapies, many people may also benefit from online education and virtual or in-person support groups. The Spina Bifida Association offers support groups and chapters on their website. The American Academy of Pediatrics also provides resources for those living with spina bifida and their families. 

Home needs

Adults living with spina bifida might need to adapt their homes or workplaces to make them more accessible. According to Sheridan, modifications can include installing ramps and handrails to ease navigation with wheelchairs or mobility aids. Adjustable furniture, such as desks, counters, and chairs adapted for wheelchair height, can make work areas more comfortable and accessible. Installing grab bars and ensuring adequate space in toilet and shower areas can help maintain independence.

These modifications often qualify for coverage through insurance or disability benefits programs. Working with an occupational therapist can help identify the most beneficial adaptations for your specific needs. Creating an accessible environment is crucial for maintaining independence, safety, and quality of life while managing spina bifida.

Staying informed and empowered

People living with spina bifida should advocate for themselves regarding medical care, support, and community resources. Stay current on research and news by visiting advocacy sites such as the Spina Bifida Association, which offers webinars and education for adults with spina bifida. You can also explore clinical trials recruiting participants with spina bifida.

Most people with spina bifida have known about their condition since childhood and have an established care team. But if you have another form, such as spina bifida occulta (SBO), you might be newly diagnosed as an adult. Consider asking your healthcare team these questions about your condition:

• How serious is my form of spina bifida?
• What are my treatment options?
• What lasting effects might I have after surgery?
• How does my type of spina bifida affect my ability to get pregnant?
• Do any future children have an increased risk of developing spina bifida?

Being proactive about your health care can lead to better outcomes and improved quality of life. Regular communication with your healthcare team helps ensure you receive appropriate care as your needs change. Remember that managing spina bifida is a lifelong journey, and building a strong support network is essential for success.

Frequently Asked Questions (FAQs)

What kind of doctor treats spina bifida in adults?

Spina bifida is managed using a team approach. You might have a neurosurgeon, neurologist, orthopedic surgeon, or all three. Other specialists who help manage affected body systems include urologists, gastroenterologists, therapists, nephrologists, and gynecologists.

How common is spina bifida?

Spina bifida is an uncommon condition, affecting about 70,000 people in the United States at any given time, though this number may be higher because some forms don’t cause symptoms, leaving people unaware they have it.

How does spina bifida affect you as an adult?

The symptoms of spina bifida depend on type and severity. Adults with spina bifida may have no symptoms or nerve damage, while others have mild forms. Some adults need intensive treatment to manage their condition.

What is the life expectancy of someone with spina bifida?

Life expectancy for someone with spina bifida is generally shorter than for someone without the condition. However, research shows people are living on average 15 years longer than they did in 2011.³ Life expectancy also largely depends on the severity and type of spina bifida you have, and any complications that may develop. 

Can adults with spina bifida walk?

Walking ability depends on the location of nerve damage in the spinal cord. Some people with spina bifida use wheelchairs, while others may walk with adaptive devices such as canes or walkers. Those with mild forms may have no difficulty walking.

Can spina bifida show up later in life?

Everyone with spina bifida is born with the condition. However, some forms such as spina bifida occulta (SBO) may not be diagnosed until later in life, often during an X-ray of the back for another condition.

What should I know about bladder and bowel management with spina bifida?

Some forms of spina bifida can affect nerve pathways to the bowel and bladder. This may cause problems with bowel and bladder function, such as constipation or frequent bladder infections. Work closely with your healthcare provider and team of therapists to prevent complications and maintain your current level of function.

Conclusion 

Spina bifida is a rare condition that develops before birth. It affects the spinal cord and nerves of the spinal column. Depending on the location of damage, symptoms and complications can range from leg weakness to frequent bladder infections to fluid on the brain.

If you have recently been diagnosed with a form of spina bifida as an adult, talk to your healthcare provider. Commons Clinic can provide therapy options such as surgery to correct a tethered cord, or orthopedic surgery for scoliosis — both complications of spina bifida. Schedule a visit with a Commons Clinic provider to discuss the next steps in your treatment plan. There are plenty of resources available to find support and help manage spina bifida.

Sources

Experts: 

• Kieran Sheridan, PT – Contact:kieran@gulfphysio.com

Sources

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13. Chu, D. I., Liu, T., Patel, P., Routh, J. C., Ouyang, L., Baum, M. A., Cheng, E. Y., Yerkes, E. B., & Isakova, T. Kidney Function Surveillance in the National Spina Bifida Patient Registry: A Retrospective Cohort Study. The Journal of Urology. Mar. 6, 2020. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7415638/
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https://pmc.ncbi.nlm.nih.gov/articles/PMC4846714/