What is Tethered Cord Syndrome?

To understand tethered cord, you must first understand the spinal cord. The spinal cord is a thick, fragile column of nerve tissue that runs from the center of your back up to the base of your skull. It is responsible for transmitting vital nerve signals between your brain and the rest of your body that contribute to movement and sensation. In normal conditions, the spinal cord floats freely within the protective cerebrospinal fluid of the spinal canal.

As the name suggests, tethered cord syndrome occurs when tissue develops and attaches to the spinal cord, limiting its normal movement or causing it to stretch abnormally from the base. Tethered cord syndrome is a neurological and structural disorder that can be present at birth and is often seen in connection with spina bifida, lipomeningocele, and scoliosis. Tethered cord can also develop in adulthood as the result of a spinal cord injury or trauma, such as surgery. This is a progressive condition that can cause progressive neurological deterioration.

Diagram of Tethered Cord from AboutKidsHealth.ca

Common symptoms experienced with tethered cord syndrome include:

Tethered cord syndrome can be divided into two categories: congenital (primary) or acquired (secondary). Congenital tethered cord syndrome can be caused by an abnormally thick filum terminale. This is the tissue found between the end of the spinal cord and the sacrum. Congenital tethered cord is also common in infants born with spina bifida. Oftentimes symptoms do not occur until the child begins to grow and the tether causes stretching of the spinal cord.

An acquired tethered cord occurs after another complication affects the spine, altering its normal structure or function. This can include severe infections, significant spinal trauma, the growth of tumors, the development of fluid-filled cysts (syrinx) in the spine (a condition known as syringomyelia), and the formation of scar tissue that can develop after previous spinal surgeries.

In cases where patients experience characteristic symptoms and a tethered cord is suspected, your primary clinician and/or a specialist such as a neurologist or neurosurgeon will order one or more specialized imaging tests to carefully examine the spinal cord and surrounding anatomical structures. These comprehensive diagnostic tests can include:

In addition to these advanced imaging tests, your clinician will conduct a thorough physical and neurological examination. They will also discuss the specific symptoms you may be experiencing, their severity, and how they impact your daily life to form a complete clinical picture and determine the best path forward.

The primary treatment for tethered cord syndrome is surgical intervention; however, it is important to note that not everyone requires immediate surgery. When tethering does not contribute to noticeable symptoms or the symptoms are minimal and manageable, a neurosurgeon may recommend a conservative approach of regular observation and clinical monitoring until symptoms develop or worsen.

For surgical intervention, a neurosurgeon will typically perform a procedure known as a lumbar laminectomy in order to carefully release the spinal cord, allowing it to move freely once again. In most cases, patients experience significant symptom relief after surgery and the progression of the condition stops. However, there is always the possibility of re-tethering over time, so regular, ongoing monitoring by your medical team is required.

RTHM’s Co-Founder and Chief Medical Officer, Dr. Jennifer Curtin sat down with Gez Medinger to discuss Tethered Cord Syndrome and other common structural disorders and how these conditions appear often in those with ME/CFS and now in those with Long COVID. Listen to Dr. Curtin explain these conditions and how they relate to each other in the links below.

Always consult with a qualified healthcare provider before making any changes to your treatment plan or if you suspect you may have a complex condition like tethered cord syndrome, ME/CFS, or Long COVID.