Passport to success
A manual for young adults with spina bifida about successfully managing your incontinence.


Tethered spinal cord syndrome

What is tethered cord syndrome and how does it affect my health and continence?

In spina bifida, the end of the spinal cord is often stuck to the spinal bones and adjacent structures. This is called tethering.

Stretching of the tethered spinal cord in young people and adults can occur and results in the tethered cord syndrome.

Tethered cord syndrome can occur at any age.

Stretching of a tethered cord causes further nerve damage, including to the bladder and bowel nerves.

Stretching of a tethered cord causes many serious problems including incontinence.

The following is a list of the symptoms of stretching of a tethered cord.

1. Pain

• Pain in the lower back and legs made worse by physical activity, eg. pain anywhere in the thighs or shins.
• Groin pain or pain in the genital/rectal area is common.
• Pain level stays the same when lying down.
• Straight leg raising causes no difference to pain.
• Inability to sit with legs crossed - like Buddha.
• Difficulty in bending slightly at the waist with activities such as washing up.
• Difficulty in holding light material (2.5 kg) at waist level while standing.

2. Urinary incontinence

• Worsened urinary incontinence such as the need to catheterise more often, leaking more urine between cathing, the bladder holding less urine.

3. Changes to your gait (way of walking)

• Increasing muscle weakness or loss of sensation in the legs.

4. Altered sensation in genital region and during sex

5. Worsened bowel incontinence such as leakage.

Tethered spinal cord syndrome: diagnosis and management

How is tethered cord managed?

Be aware and alert to the symptoms previously mentioned in order to maintain maximum lifestyle independence.

If you have symptoms of a tethered cord, seek medical help. Do not delay. The earlier the treatment, the less disability you will have.
A neurosurgeon will diagnose tethered cord by:

• an MRI (magnetic resonance image) picture of the spinal cord and lower brain area (an MRI is a sophisticated type of X-ray)
• careful analysis of your symptoms.

If the pain is bad or you are losing function, then surgery is necessary. The neurosurgeon will very carefully cut away the tissue which has become tethered.