Cervical spine and Neurological findings in hEDS patients

Hi, my name is Dr. Ross Hauser. Welcome to the Hauser Neck Center. I am excited to share information about a recent study conducted at Caring Medical and the Hauser Neck Center. This study was published in the Journal of Clinical Medicine in 2026. I encourage everyone to read the article for further details.

In this article, we analyzed the initial presentation of 84 consecutive patients diagnosed with hypermobility EDS. Our aim was to document their symptoms and investigate the structural (cervical spine pathology) and pathophysiological findings. We collected and tabulating data from the 84 patients. They listed 82 symptoms. Working our research statistician who asked which of the 82 symptoms reported should be analyzed and included in our paper, we decided to focus on the symptoms experienced by at least 70% of the patients. This resulted in the identification of 29 symptoms for further analysis.

Taking it one step further, our research hypothesized that many of the symptoms in hypermobility EDS patients could be linked to postural problems, particularly those caused by frequently looking down at cell phones. This forward head posture, combined with ligament laxity, was believed to contribute to upper and lower cervical instability. Over time, weakened or overstretched ligaments from poor posture may lead to structural neck changes, and these changes could result in obstruction of the carotid sheath due to ligamentous cervical instability.

EDS & Hypermobility Disorders

Patients diagnosed with hypermobility EDS experience a wide range of symptoms

Patients diagnosed with hypermobility EDS experience a wide range of symptoms that are more prevalent and severe than those seen in the general population. Among the more commonly reported symptoms are, brain fog, fatigue, lightheadedness, sensitivity to light, and ringing in the ear.

In our study of 84 patients, 82% had digestive issues, 77% suffered from constipation, and 89% reported anxiety. Neck pain was especially frequent, affecting 92% of patients, while 83% experienced grinding or clicking in the neck. Other notable symptoms included sound sensitivity and dysautonomia.

Impact of Cervical Ligamentous Instability

Although not all patients showed upper cervical instability, a significant proportion did, and other studies involving EDS populations have consistently reported a high prevalence of such instability. These findings underscore the connection between upper cervical instability and the diverse symptoms experienced by individuals with hypermobility EDS.

When the cervical spine ligaments are compromised, structural alterations in the neck occur. Notably, the atlas (the first cervical vertebra) often shifts forward, which can result in the obstruction of the jugular vein and compression or stretching of the vagus nerve. This sequence of events may lead to a condition known as cervical vagopathy.

In our study

99% of patients exhibited forward head posture.
95% experienced an abnormal depth of the cervical curve, indicating a loss of the normal cervical lordotic curve.
52% demonstrated ligamentous cervical instability during extension movements.
55% showed ligamentous cervical instability during flexion movements.
90% had upper cervical instability at the C1-C2 facet joint.

The vagus nerve

Another important observation was that the total bilateral cross-sectional area of the vagus nerve was decreased in all patients tested. In summary, over 90% of consecutive patients with hypermobility Ehlers-Danlos syndrome (EDS) demonstrated upper cervical instability, vagus nerve degeneration, and jugular vein compression.

Degeneration of the vagus nerve places the body in a state of sympathetic dominance. This shift can lead to a variety of symptoms, including pre-syncope, syncope, postural orthostatic tachycardia syndrome (POTS), visual dimming, dizziness, heart palpitations, nausea, gastrointestinal issues, air hunger, anxiety, mast cell activation syndrome, and chronic inflammation. These symptoms are commonly experienced by individuals with hypermobility Ehlers-Danlos Syndrome (EDS).

Eye Pressure and Optic Nerve Assessment

As part of the diagnostic testing, we conducted eye pressure measurements using a pupilometer. This allowed us to evaluate the optic nerve sheath diameter, specifically looking for signs of fluid accumulation around the eye nerves. This test revealed that 93% of patients had abnormal results, suggesting elevated intracranial pressure. These findings raise the question of why patients exhibit increased cerebrospinal fluid around the optic nerve and elevated brain pressures. Upon further examination, it became apparent that a significant percentage of patients had compression of the jugular veins while lying down.

Jugular Vein and Vagus Nerve Evaluation

We examined the cross-sectional areas of the jugular veins and vagus nerves to determine whether structural changes in the neck were causing excessive stretching or compression. Our findings indicated that the jugular veins could become dynamically compressed, meaning that certain head positions could close off the jugular veins. It is important to note that these veins serve as the main drainage ports for the brain.

Both the jugular vein and the vagus nerve are located within the carotid sheath, which lies just anterior to the cervical vertebrae. This anatomical proximity makes them susceptible to compression due to upper cervical instability.

Specifically, 96% of patients experienced jugular vein compression in the supine position, with the majority of cases occurring at the atlas vertebra. In addition, 73% of patients showed compression of the jugular vein in the middle of the neck, but most compression was localized at the atlas.

Structural Analysis of the Neck

Structural analysis was performed using fluoroscopy, also known as digital motion X-ray. This technique enabled us to develop a measurement called C6 AI, which provides the sagittal view of the atlas’s position relative to C6. This served as our objective measurement for neck alignment. Additionally, we assessed the depth and curvature of the cervical spine to determine if patients had lost the normal curve.

Motion testing was used to identify joint instabilities that might not have been detected by standard imaging methods such as MRI. For example, we diagnosed multilevel flexion and extension instabilities, as well as lateral C1C2 instability, using open mouth lateral flexion views.

Neck Vitals Analysis

Digital motion X-ray depth measurements, C6 AI, and other neck vitals analyses were conducted to provide normative data for these tests. These methods were developed and are routinely performed at Caring Medical and the Hauser Neck Center in Fort Myers, Florida. The norms for the various tests are available for reference.

Prolotherapy

It is important to clarify that when discussing these issues, the focus is on lateral C1-C2 facet joint instability. As the condition advances, it may affect the autonomic nervous system and even the brain, potentially through internal jugular vein (IJV) compression. Symptoms may then extend to pain radiating down the arms or positional radiculopathy. Severe cases can result in C1-C2 facet joint instability, and if the atlanto dens becomes unstable, catastrophic symptoms may arise, sometimes necessitating neurosurgical intervention.

For cases within the realm of C1-C2 facet joint instability, we offer Prolotherapy. This injection technique stimulates the repair of ligaments, primarily targeting the capsular ligaments of the facet joints where instability has been identified by digital motion X-ray. Treatment focuses on the facet joints at C1, C2, and other segments demonstrating instability.