Tethered Cord Syndrome in EDS: 15 Questions Answered by a Leading Neurosurgeon

Subscriber Exclusive Q&A from Episode 137 of the Bendy Bodies Podcast

In Episode 137, neurosurgeon Dr. Petra Klinge joins Dr. Linda Bluestein for a deep dive into tethered cord syndrome, with a particular focus on the occult form. This type of tethered cord does not appear on imaging studies, yet can lead to significant symptoms in people with connective tissue disorders such as Ehlers-Danlos Syndromes (EDS). The episode covers everything from early symptom recognition and diagnostic strategies to surgical decision-making and emerging research, offering a comprehensive look at a frequently misunderstood condition in people suffering from connective tissue disorders.

What exactly is tethered cord syndrome, and how does it differ when it’s “occult”?

Tethered cord syndrome (TCS) is when the spinal cord is abnormally attached within the spinal canal, causing tension and restricted movement. Occult tethered cord syndrome refers to cases where no tethering is visible on imaging, yet the patient still experiences symptoms consistent with tethered cord. The term "occult" means the problem is hidden from view using standard diagnostic tools like MRI (Magnetic Resonance Imaging).

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What led Dr. Klinge to focus on tethered cord syndrome in people with Ehlers-Danlos syndromes?

Her interest was sparked by a pediatric patient with unexplained constipation and leg pain. Despite an unremarkable MRI, the child improved after surgery to release what Dr. Klinge had suspected was a tethered spinal cord. This experience, along with repeated similar cases, led Dr. Klinge to recognize a pattern in patients with connective tissue disorders.