Q: I have Spina Bifida Occulta and the pain is very debilitating. How can I get help when my doctor says that it does not cause pain?
A: Spina Bifida Occulta (SBO) is a condition that often does not get much attention. Yet, it can significantly decrease quality of life for some people. SBO involves a minor deformity of 1 or 2 vertebrae, usually in the lower spine. Many people have it and never even know because it is not symptomatic in most cases. However, in some people, the spinal cord, which normally swings freely in the lower spine, becomes “tethered” or attached to the deformed bones, and becomes taut. As the person moves normally, the taut cord is pulled and stretched, causing chronic pain in the low back and leg(s), muscle weakness in leg(s), problems with walking, and sometimes, loss of urinary or bowel control. These symptoms are called, “tethered cord syndrome.” In children with SB, a tethered cord is almost always released through surgery at a young age, often before any signs of a problem. In some cases though, as in SBO, there may be no symptoms until adulthood.
In adulthood, symptoms from a tethered cord can be very debilitating. They can be relieved through pain meds or alternative therapies, but both provide only temporary relief in the best case. There is only one recognized medical treatment for a tethered cord, which is tethered cord release surgery to ”de-tether” the spinal cord from the vertebra(e) that it is attached to. The surgery has varying degrees of success for many people, and the outlook for adults is often different from that of children. To determine who will benefit from the surgery, the neurosurgeon will need to make a thorough assessment of the patient’s symptoms, perform an MRI scan, and make recommendations based on that information.
If surgery is not recommended and pain medications alone are not effective, some people find alternative therapies to be helpful. Comprehensive pain management programs, water aerobics/therapy, physical therapy, passive stretching, acupuncture, massage, and heat or ice are most commonly used.