Because of advances in medical care, more and more people are living with spina bifida (SB) into adulthood. Many patients with SB may have trouble finding healthcare providers with experience caring for patients with this disease in adulthood. The problems encountered by SB patients as they age into adulthood differ from those of childhood and require different sets of medical knowledge and expertise.
What problems may affect adults with spina bifida?
Normal aging and spina bifida
The normal aging process involves such things as loss of muscle strength and flexibility, less physical stamina, and a decrease in sensory abilities. People with SB have all of these usual signs of aging, but their declines may be faster or more severe. This is especially true in those body areas that already are stressed by SB.
Shunt failure and spina bifida
A shunt is used to drain fluid from the brain. The failure of a shunt can cause neurological (nerve-related) problems such as trouble with thinking and using language. Also, shunt failure may contribute to Chiari brain stem compression, a condition in which the skull pushes down on the cervical (neck) spine. A weak voice, pneumonia, and trouble swallowing can result.
Spinal cord tethering and spina bifida
In tethering, the spinal cord becomes attached to surrounding tissue rather than remaining free in the spinal canal. Symptoms include:
- Skin sores
- Rapidly progressing scoliosis (curvature of the spine)
- Loss of sensation
- Pain (especially in the lower extremities or testicles)
- Urinary tract infections or leakage
- A sudden change in bowel patterns
Surgery can correct tethering, but first an MRI (magnetic resonance imaging) of the whole nervous system and a check of the shunt should be done.
Urinary and bowel systems and spina bifida
Changing urinary symptoms can mean that a previously stabilized urinary system may be changing. Some of these symptoms may include more frequent infections, incontinence (inability to hold urine) that is new or becoming worse, and declining kidney function. Bowel symptoms can include constipation or abdominal pain that is getting worse even though it’s being treated by the same methods that used to work. If you have these symptoms, see a doctor right away for an evaluation. That evaluation may include imaging (renal ultrasound or CT scan), cystoscopy, blood work, or urinary functional testing (urodynamics). Findings that can explain these symptoms can range from minor (a stone in the bladder which can be removed easily) to severe (kidney failure). It is a good idea for adults with SB to seek medical advice right away if these symptoms are present.
Orthopedic issues and spina bifida
People with SB can have many different issues with their bones. For some patients, osteoporosis and fractures in the bones of weakened limbs are a risk. It is important for people with SB to get enough calcium and vitamin D.
Early-onset arthritis is common, especially in those using their shoulders to move. The same is true for those who walk without crutches because a side-to-side walking motion places a lot of stress on the knees. More than half of adults with SB have braces that do not fit or work well. A health care professional can work with a patient to help correct these problems.
Scoliosis (curving of the spine) and spinal stenosis (a narrowing of the bone channel that contains the spinal cord) can get progressively worse with aging. This is especially true for patients who are in wheelchairs.
Progressive back pain is common and may be the result of any of the above conditions. The patient with back pain should be seen by a physiatrist (rehabilitation doctor specializing in bones, muscles, and nerves).
Skin issues with spina bifida
A loss of skin sensation at the level below the SB is common. In addition, there may be poor circulation, inability to sweat, bruising, and slow wound healing. Skin should be checked regularly for wounds and steps taken to avoid potential infection.
Frequent fluid intake of about eight cups of fluids per day is needed to prevent skin breakdown.
Those using a wheelchair should change position every 15 minutes to avoid pressure sores. Also, these patients should use a mirror to check for sores on the backside.
Latex allergy and spina bifida
The rate of latex or natural rubber allergy in people with SB born between 1987 and 1995 is higher than 50%. Since then, improvements in latex purification have reduced the incidence of latex allergy. However, anyone with this allergy should make sure any hospital or dental office they visit is a latex-free environment.
High blood pressure and spina bifida
Hypertension (high blood pressure) at a relatively young age is a problem in many SB patients. It may be due to many factors linked to SB. Routine blood pressure checks and aggressive treatment are important to maintain a healthy heart and blood vessels.
Lung health and spina bifida
Scoliosis, Chiari brain stem compression, or weak abdominal or chest muscles can hurt breathing capacity. Also, obstructive and central sleep apnea are very common and can lead to long-term damage to the heart and daytime sleepiness. Those who consistently feel tired or who must take naps during the day should consider a breathing evaluation.
Obesity and exercise with spina bifida
Adults with spina bifida tend to have high rates of obesity. Sticking to a good diet and a regular exercise routine can help avoid excess weight.
Pregnancy with spina bifida
Women with spina bifida are able to get pregnant. However, their condition makes the pregnancy more complex. This is especially true for women who have had bladder or bowel operations.
If a woman who has spina bifida is sexually active and not trying to prevent a pregnancy, doctors recommend 4 mg of folic acid and B vitamin supplements. The dose of folic acid recommended for women with SB is 10 times higher than unaffected women due to increased risk of passing SB along to offspring.
The type of delivery that a doctor recommends will depend on factors including sensation level, ability to push with the pelvic muscles, and any surgery the woman has had on her abdomen in the past.
After-pregnancy effects may include changes in mobility, bladder function and lower body sensation. Women with spina bifida who become pregnant will require assessment and may require special monitoring by an obstetrician specializing in high risk pregnancies.
Pain and spina bifida
Joint stress, muscle strain, spinal stenosis, and arthritis are all painful conditions commonly found in SB patients. A physiatrist or pain management specialist can do an exam and talk to you about treatment options.