Spine, Brain & Nerve

EDS and HSD’s are known for a wide variety of anatomical manifestations in the spine and brain.

This page is dedicated to research and information about these challenges.

In a multisystem condition, it is nearly impossible to separate and distinguish which issues are causing which symptoms. Of course, each medical specialist will TRY, but as patients, we physically and emotionally need to be recognized for the global and wholistic state of our bodies. However, the more we can learn to distinguish our own symptoms and articulate their overlaps, the faster and more successfully we can be diagnosed and treated. Please combine your research here with research from our Dysautonomia & Neurological Manifestations page.

Spine Manifestations in Ehlers-Danlos Syndromes – Overview  

Authored by the leading physicians for the diagnosis and treatment of these conditions. 


Cranio-Cervical Instability

A recent study by neurosurgeon and EDS specialist Dr. Petra Klinge, et al. published a study demonstrating that laxity in the ligaments of the neck likely exist in a majority of EDS patients, causing abnormal spinal cord movement which triggers pain and headages in patients, regardless of MRI findings. This is an incredibly important step in establishing diagnoses as CO-conditions for hypermobility spectrum patients, that can be assumed upon initial diagnoses. Such pathogenic evidence decreases the time and effort for obtaining treatment, and increases the likelihood of correct treatment. An abstract can be read here.


Video: Headaches in Chiari and the EDS population with Dr. Fraser C. Henderson Sr., MD

Chiari Malformation

The knowledge about this condition, along with most of Ehlers-Danlos, is growing on a daily basis.  A few years ago, Chiari wasn’t recognized without quite a large measurement of the cerebeller tonsils being misplaced. We now know that most EDS patients must be imaged sitting up in order to make an accurate Chiari diagnosis (Upright MRI), and that conditions such as tethered cord can create Chiari – like symptoms due to compression of the spinal cord over time and the subsequent pulling down of the cerebellum. If you suspect that you have Chiari, use these articles to advocate for the testing and treatment you deserve. An overview of Chiari Malformation can be read here.

Video: Headaches in Chiari and the EDS population with Dr. Fraser C. Henderson Sr., MD

The Bobby Jones CSF Foundation – Chiari and more. Support, Community, Answers

Occult Tethered Cord

Quickly becoming one of the most common conditions next to CCI in connective tissues disorders and the hypermobility spectrum, Dr. Sunil Patel (co author of the Spinal Manifestations in EDS Overview article above, and one of the leading neurosurgeons and spine specialists for Ehlers-Danlos patients), believes that all EDS patients have some degree of cord tethering (Patel, MUSC, 2020).  Over time, the tethering of the deep tissues, usually in the lumbar spine but also in the thorasic in some cases, compresses the vertebrea and pulls down acutely on the brain and brain stem. This can lead to disc degeneration, inflammatory arthritis, intense pain, nerve pain and nerve impingement, headaches, and the exacerbation of CCI symptoms, headaches, dysautonomia and even dystonia.

While we, as patients, wait for further studies and better diagnostic methods to be developed for OTC, neurosurgeons like Dr. Fraser C. Henderson, Dr. Sunil Patel, and Dr. Petra Klinge are actively treating OTC patients on a weekly basis.

 A Critical Analysis of Surgery for Occult Tethered Cord Syndrome – by Dr. Jeffery Greenfield et al. 

Symptoms of OTC in EDS/HSD include:   

  • Bladder dysfunction (types of incontinence, urine retention, and night urination often showing up in childhood).
  • Nerve pain the pubic region ranging from occasional sharp shocks to prolonged periods of sharp needle like pain, burning that feels like a UTI but absent of UTI pathology, and skin that cannot be touched without triggering pain (localized allodynia)
  • Contraction of the hamstrings and evidence of dural immobility in the sciatic nerve descending from the pelvis down the back of the legs.
  • Dulled nerve sensitivity in the lower back.
  • Possible puckering of skin in the lumbar just above the tailbone (can be present at birth, called a dimple).
  • Generalized leg pain and/or nerve pain in the feet and lower legs.
  • Many patients succesffuly diagnosed and had surgical de-tethering with post op pathology confirming diagnosis, report a feeling of tightness around the chest that impairs breathing. Anecdotes from patients also suggest that OTC aggravates and/or causes some GI problems that resolved after detethering.
  • Sensation of tugging in the back of the head and/or neck when bending or curling the spine, sometimes felt sitting up in bed first thing in the morning.
  • Headaches, burning along the spine, raised temperature of skin along the spine only after activity (related to mast cell activation as well).
  • Some patients report stroke-like episodes of numbness, nerve pain, tachycardia and severe brain fog with speech difficulties that may be associated with both CCI and OTC.

The Lifespan Health Team at Brown University 

Dr. Klinge has trained Svokos and Sullivan, and Klinge and Sullivan both see adult and pediatric patients.

Disclaimer: The information contained on this site and the supporting attachments provided by Rachel Lee Patient Advocacy Consulting are for educational purposes only. Although we have performed extensive research regarding medical conditions, treatments, diagnoses, protocols and medical research, the staff of Rachel Lee Patient Advocacy Consulting are not licensed members of the North Carolina Medical Board or any clinical affiliates including but not limited to the NC Board of Physical Therapy Examiners, the NC board of Licensed Professional Counselors, or the NC board of Dietetics/Nutrition. Information provided by members of Rachel Lee Patient Advocacy Consulting should not be considered a substitute for the advice of a licensed medical doctor, counselor, therapist or other licensed clinical practitioner in handling your medical affairs.