1. What is a tethered cord?

The spinal cord is tethered when it is not able to slide normally inside the spinal canal. Scarring from a previous spinal injury can cause the cord to be stuck to the spinal canal. Or, something at the bottom of the spinal canal can hold it down. This may be due a tumor or congenital malformation or the band at the end of the spinal cord (the filum terminale) can be too short or too tight.

2. Does tethered cord ever occur in CM1 patients?

Yes. A few reports reviewing previous cases suggest that CM1 patients may, in a few cases, also have a tethered spinal cord from a tight filum terminale. This is a new and controversial area and no prospective studies evaluating this have yet to be published. (Prospective studies are studies that collect information at the beginning and throughout treatment and follow-up, instead of only reviewing previous files.)

3. What symptoms can tethered cord cause?

Tethered cord can cause urinary urgency, urinary and/or stool incontinence, difficulty starting the urinary stream, constipation, diarrhea, difficulty with sexual relations, difficulty standing over 60 minutes, low back pain, leg pain, numbness in the soles of the feet, difficulty riding or driving a car, and severe growing pains during childhood and adolescence. It can also result in scoliosis. The relation of tethered cord to elongation of the brainstem in some persons with Chiari malformation is currently being investigated.

4. What is the treatment for tethered cord?

If the tethered cord is due to scarring within the spinal canal, in some cases, the scarring can be released at surgery. For those with a short or tight filum terminale, an operation can be performed to cut the band. The band itself is made of fibrous tissue. If the tethering is due to a tumor or a congenital abnormality, the surgery is usually more complex.