Symptoms
Meningocele and myelomeningocele are evident at birth. Other than the obvious spinal cord deformity, symptoms are caused by complications of spina bifida. The most common complications include the following:
- People with spina bifida occulta are almost always completely asymptomatic.
- Even after one or more operations to correct the defects, some disability almost always remains. Various degrees of leg paralysis, spine curvature (scoliosis), hip, foot, and leg deformities, and problems with bowel and
bladder control are the most common residual disabilities.
- Abnormalities at the lower spine are always accompanied by upper spine abnormalities (Arnold-Chiari malformation), causing subtle coordination problems that usually can be improved by physical therapy.
- Spine, hip, foot, and leg deformities are often due to imbalances in muscle strength and function resulting mostly from residual paralysis, but with a spasticity component.
- The most common
bladder and bowel problems are inability to voluntarily relax the muscles (sphincters) that hold urine in the bladder and stool in the rectum.
- Hydrocephalus (accumulation of fluid in the brain) is another common residual problem, affecting about 90% of people with spina bifida. Having some fluid around the brain is normal and healthy, but in spina bifida the fluid often cannot drain naturally. Without treatment, this extra fluid can cause neurological problems or mental retardation; however, these individuals are of normal intelligence if their hydrocephalus is treated aggressively. Hydrocephalus often recurs gradually after treatment.
- Many children with myelomeningocele have or develop a tethered spinal cord. The cord is attached to surrounding tissues and cannot move up and down freely as it normally does. This can cause foot or leg deformities, hip dislocation, or scoliosis. The problems can worsen as the child grows and the tethered cord is stretched.
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Obesity (due to inactivity) and urinary tract disorders (due to poor drainage) are common complications of spina bifida.
- Pathologic bone fractures occur in as many as 25% of people with spina bifida. A pathologic fracture is a break that occurs because of weakness or disease in the bones, not solely because of injury. A very minor injury can worsen a pathologic fracture, causing pain and bringing the fracture to medical attention.
- Growth hormone deficiency resulting in short stature is common in people with spina bifida. On average they are several inches shorter than siblings or peers.
- Although most people with spina bifida have normal intelligence, many have learning disorders. Adequate treatment of hydrocephalus and adaptive physical therapy are necessary to permit access to educational opportunities.
- Psychological, social, and sexual problems occur more often in people with spina bifida than in the general population.
- Allergy to latex (a natural rubber used in medical gloves, some types of elastic, balloons, and many other common items) is very common in people with spina bifida. This is thought to be a result of intense exposure to latex in the early years of life because of frequent surgeries and other medical procedures. An
allergic reaction to latex can be life threatening.
- Even individuals with no apparent symptoms or disability from spina bifida may have subtle or mild signs or neurological problems. Some, for example, have a dimple, darkening, or small hairy patch on the skin overlying the base of the spine. Others have a fatty growth called an epidural lipoma that forms within the spinal canal; this is usually harmless but may result in tethering of the spinal cord.
Other Therapy
A child’s emotional and social development can be deeply affected by physical disabilities such as spina bifida. To keep this development on as “normal” a track as possible, these children should be part of the mainstream whenever possible.
- Most of these children can be educated in mainstream schools. They should be evaluated for learning disorders, which can (and must, by federal law) be addressed by the public school system.
- Children should be in the least restrictive environment possible. They should learn skills that help them be as independent as possible.
- They should be encouraged to participate with their peers in age-appropriate activities such as clubs and teams to the best of their abilities.
- Children should take on responsibility for their own care as much as possible.
- After childhood, group homes may be used to train patients with spina bifida to live independently.
Follow-up
People with spina bifida should be seen frequently by the appropriate professionals so that they can be checked for progressing deformities, disabilities, or complications that may require intervention. A specialized “clinic” can assemble the needed professionals, so parents are not spending all of their time taking the child for medical attention.
- The effectiveness of their physical therapy, including their braces, orthotics, crutches, and wheelchair, should be checked often and changes made if necessary.
- Development of hydrocephalus or worsening of deformities warrants the attention of the appropriate surgeon.
- Medical complications such as urinary tract infection or require appropriate treatment. The goal is to prevent secondary chronic complications such as heart disease , diabetes , and kidney problems .
- The individual’s educational progress should be checked; learning disorders should be addressed with appropriate training.
- Their emotional and social development also needs to be checked and appropriate treatment or counseling offered if needed.
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