Tethered Cord Syndrome

Background
Tethered cord syndrome is a condition where the spinal cord (a bundle of nerves in your back) is stuck or pulled too tight. Normally, the spinal cord is anchored inside the spine which allows it to move naturally as your body moves. But in this condition, it’s stuck to something it shouldn’t be—like nearby tissue or bone. This can stretch the spinal cord and cause problems when you try to do certain movements.

There’s a small part at the bottom of the spinal cord called the filum terminale that helps hold the spinal cord in place. If this part does not form the right way before a baby is born, the spinal cord can be pulled too tight as the child grows. This can hurt the spinal cord and nerves and cause more symptoms over time. Although tethered cord usually happens during development, there have been reported cases of adult-onset tethered cord syndrome.¹

Doctors use MRI scans (a type of picture of the inside of your body) to help find tethered cord syndrome.^1,2 But sometimes, even if the MRI looks normal, people can still have symptoms. This is called occult tethered cord syndrome.^1,3 Experienced neurologists can often see subtle changes in the MRI that others might miss.

Symptoms^1,3,4
People with tethered cord syndrome can have different symptoms. Most patients report that their symptoms get worse over time. Common symptoms include:

1. Nerve Problems – Weak legs, tiredness, muscle cramps, or numbness
2. Bathroom Problems – Issues using the restroom like going too often, not being able to go, or pain while using the restroom
3. Pain – Pain in the lower back or legs, especially when walking

Treatment Options
Doctors usually have patients try physical therapy or other treatments first. If those don’t help, surgery may be needed. The surgery removes the part that’s pulling on the spinal cord—like cutting the tight filum terminale. Many people feel better after this surgery.³

Another kind of surgery called spine shortening osteotomy can also help by making the spine a little shorter to take the pressure off the spinal cord.¹

If you think you have tethered cord syndrome, you can check out SAFIRE’s website to learn about doctors who treat it.

How SAFIRE is Helping
Tethered cord syndrome can be hard to diagnose, especially in people with other health problems. Because the symptoms of tethered cord are similar to symptoms seen in other conditions, doctors often evaluate the patient for all possible causes of their symptoms.

Since surgery is sometimes the best way to treat it, doctors from different specialties often work together to find the best plan for each patient. SAFIRE is working to teach more people about this condition, support research to find better treatments, and help provide resources to both patients and doctors.

If you want to help, you can visit SAFIRE’s donation page to make a contribution.

References

1. Hara T, Ohara Y, Kondo A. Diagnosis and Management of Tethered Cord Syndrome. Adv Tech Stand Neurosurg. 2024;49:35–50.
2. Apaydin M. Tethered cord syndrome and transitional vertebrae. Surg Radiol Anat. 2020;42(2):111–119.
3. Klinge PM, Leary OP, Allen PA, et al. Clinical criteria for filum terminale resection in occult tethered cord syndrome. J Neurosurg Spine. 2024;40(6):758–766.
4. He K, Wang K, Liu Z, et al. Tethered cord syndrome from pediatric and adult perspectives: a comprehensive systematic review of 6135 cases. Neurosurg Focus.
5. Shehaj A, DiGiovanni A, Millar D, et al. (March 05, 2025) Cerebrospinal Fluid Leaks and Healthcare Costs Associated With Tethered Cord Release and Filum Terminale Sectioning. Cureus 17(3): e80102. doi:10.7759/cureus.80102 2024;56(6):E18.

Background
Tethered Cord Syndrome (TCS) is a neurological disorder characterized by an abnormal fixation of the spinal cord to surrounding tissues, resulting in pathological traction. Normally, the spinal cord is loosely suspended within the spinal canal, allowing for relative movement with the vertebral column. When tethering occurs—whether due to congenital malformations (e.g., tight or fatty filum terminale, lipomyelomeningocele) or acquired causes (e.g., post-surgical scarring, trauma)—this mobility is compromised. As a result, physiological elongation or motion of the spine exerts abnormal mechanical stress on the spinal cord, leading to progressive neurological decline.

One of the primary anatomical considerations in congenital TCS is the filum terminale, a fibrous structure anchoring the conus medullaris to the coccyx. In cases of filum terminale malformation, particularly with a thickened or fatty filum, the cord may be abnormally tensioned. As a child grows, this tension increases, exacerbating mechanical injury to the spinal cord and potentially producing irreversible neuronal damage. Although commonly recognized in pediatric populations, adult-onset TCS has also been documented.¹

Diagnosis can be made on MRI of the lumbosacral spine, where imaging may reveal a low-lying conus medullaris (below L2), a thickened or fatty filum terminale, or other dysraphic anomalies.^1,2  However, diagnosis can be challenging in patients with borderline imaging findings and many of these exams are interpreted as normal by reading radiologists limiting access to diagnosis and care. In occult tethered cord syndrome, patients present with characteristic symptoms despite normal or non-diagnostic MRI findings.^1,3 Experienced neurosurgeons may be able to identify subtle imaging cues not captured in standard radiology reports.

Clinical Presentation
In tethered cord syndrome, symptoms tend to progressively worsen over time and typically present as a clinical symptom triad.^1,3,4

1. Neurological Deficits: Distal lower extremity weakness, sensory disturbances (paresthesia, numbness), fatigue, and myofascial pain or cramping
2. Bowel and Bladder Dysfunction: Encompassing urinary urgency, frequency, retention, dysuria, and constipation as well as pain with urination or defecation.
3. Pain: Typically localized to the lower back and/or the legs, often exacerbated by activity

Current Treatment Options
When conservative management (e.g., physical therapy, pharmacologic symptom control) fails to yield adequate results, surgical detethering is the standard of care. Microsurgical sectioning of the filum terminale or resection of the tethering lesion aims to restore spinal cord mobility and reduce tension. Outcomes are generally favorable in carefully selected patients, particularly when performed prior to the onset of irreversible neurological decline.

An alternative, particularly in patients with complex anatomy or recurrent tethering, is spinal column shortening via osteotomy, which reduces traction on the cord without direct intradural manipulation. This approach is still evolving and reserved for select individuals.

Role of SAFIRE
Diagnosis and treatment planning in TCS can be complex, particularly in patients with overlapping clinical findings with iliac vein compression. Multidisciplinary evaluation—incorporating neurosurgery, neurology, urology, and interventional radiology—is often essential to develop an individualized treatment strategy. Moreover, distinguishing TCS from mimicking disorders (e.g., multiple sclerosis, peripheral neuropathies, cauda equina syndrome and iliac vein compression) is critical for appropriate care.

SAFIRE is actively working to improve awareness, foster clinical education, and support research into both pediatric and adult manifestations of TCS. The foundation prioritizes patient access to experienced providers, encourages standardized diagnostic protocols, and funds ongoing investigations into long-term outcomes and novel surgical techniques.

If you are interested in advancing the understanding and treatment of tethered cord syndrome, you are encouraged to contribute to SAFIRE through our donation page.

References

1. Hara T, Ohara Y, Kondo A. Diagnosis and Management of Tethered Cord Syndrome. Adv Tech Stand Neurosurg. 2024;49:35–50.
2. Apaydin M. Tethered cord syndrome and transitional vertebrae. Surg Radiol Anat. 2020;42(2):111–119.
3. Klinge PM, Leary OP, Allen PA, et al. Clinical criteria for filum terminale resection in occult tethered cord syndrome. J Neurosurg Spine. 2024;40(6):758–766.
4. He K, Wang K, Liu Z, et al. Tethered cord syndrome from pediatric and adult perspectives: a comprehensive systematic review of 6135 cases. Neurosurg Focus. 2024;56(6):E18.
5. Shehaj A, DiGiovanni A, Millar D, et al. (March 05, 2025) Cerebrospinal Fluid Leaks and Healthcare Costs Associated With Tethered Cord Release and Filum Terminale Sectioning. Cureus 17(3): e80102. doi:10.7759/cureus.80102