I am an adult with Spina Bifida. How often should I see my physicians?

Adults with Spina Bifida should receive routine follow-up and surveillance of their shunts, kidney and bladder function, and mobility equipment.

The Spina Bifida Association recommends neurosurgical assessment of shunts at least every two years. There is a trend away from using frequent CT scans to monitor for subtle shunt malfunction, so the preferred way to look for increased brain pressures is by a dilated eye exam. Therefore, individuals with shunts are advised to see an ophthalmologist every year.

Individuals with neurogenic bladders should have a yearly assessment of their kidney function and see a urologist with expertise in bladder dysfunction. The Spina Bifida Association recommends a renal ultrasound every two years to look for hydronephrosis (swelling of the kidneys' collecting system) and hydroureter (swelling of the tubes between from the kidneys and bladder). If there is a change in dryness or an increase in urinary tract infections additional testing (i.e. urodynamics) is also advised.

Annual assessment of mobility aides, including braces, canes, crutches, walkers, wheelchairs, and cushions will protect skin, bones, and joints. The providers with the best training in evaluating mobility aides are physical therapists, orthotists, orthopedists, and physiatrists, so an annual visit with at least one of these specialists is recommended.

Finally, all adults need regular preventive services in primary medical care and dentistry so annual visits to the primary care doctor and dentist are important. The Health Guide for Adults Living with Spina Bifida includes a Personal Health Care Record that is helpful for keeping track of medical visits.

For more information on the genetics and factors associated with Spina Bifida, please visit the Spina Bifida Association fact sheet.

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