How to Live With a Tethered Spinal Cord

Tethered spinal cord syndrome is a genetic condition that causes progressive neurological decay. It is a complication of spina bifida. The first symptoms appear during childhood, but it often goes undiagnosed until adulthood, when the symptoms of progressive neural damage become too severe to overlook or ignore. Living with tethered spinal cord syndrome requires intensive medical care and a strong support network.

Instructions

Medical Treatment

• 1

  Seek effective surgery, which can greatly reduce the incidence of symptoms and slow or eliminate the neurological decay. Order surgery to sever the spinal cord tether to reduce chronic pain.

• 2

  Consider seeking surgery to de-tether the spinal cord in physically mature individuals to reduce cystic growth and improve neurological function.

• 3

  Undergo a continuing program of physical therapy. This is necessary to maintain and improve leg and arm strength to ensure that personal mobility can be maintained.

Living with Tethered Spinal Cord Syndrome

• 4

  Research more about the condition and encourage everyone in the affected individual's support network to do the same. People with the syndrome have normal mental functions and many can engage in regular physical activity with few disabilities if proper treatment is administered early in their life.

• 5

  Provide support and understanding to individuals with severe neurological issues resulting from the syndrome. Partial paralysis and loss of bowel and bladder control are the most embarrassing and difficult symptoms of the condition to live with.

• 6

  Encourage patients and their caregivers to enter a course of psychotherapy. The syndrome itself has no notable emotional or behavioral side effects, but living with a disability and supporting a disabled person can be emotionally taxing.

• 7

  Encourage the patient to interact with society. Even patients with severe forms of the syndrome can walk with the assistance of leg braces or other mobility assistance devices. Most individuals with the condition have no learning disabilities.

• 8

  Protect the patient from emotional and physical abuse. Children with the syndrome are particularly vulnerable to cruelty from their peers. Feelings of helplessness can be exacerbated by a threatening social environment.