hypermobility Ehlers Danlos Syndrome (hEDS) and Mal de debarquement syndrome

A case history presentation – a patient who has hypermobility Ehlers Danlos Syndrome (hEDS) and Mal de debarquement syndrome

Summary learning points and explanatory notes of this video

  • Patients with hEDS suffer from loose connective tissue that makes recurrent joint dislocations and spinal and cervical instability common disabling symptoms. This case is an illustration of what weakened and damaged cervical spine ligaments can cause whether from hypermobility Ehlers Danlos Syndrome or degenerative wear and tear in the cervical spine.
  • In 2014 our staff at Caring Medical published our paper “Chronic Neck Pain: Making the Connection Between Capsular Ligament Laxity and Cervical Instability,” in The Open Orthopaedics Journal. (1). In this peer-reviewed research, which is cited by 113 other research publications, we offered the following points:
    • “When the cervical spine capsular ligaments are injured, they become elongated and exhibit laxity, which causes excessive movement of the cervical vertebrae. In the upper cervical spine (C0-C2), this can cause a number of other symptoms including, but not limited to, nerve irritation and vertebrobasilar insufficiency with associated vertigo, tinnitus, dizziness, facial pain, arm pain, and migraine headaches.” What we found in patients was the common characteristic symptoms of sense of motion without motion, dizziness, and disorientation could be helped if we non-surgically repaired their cervical spine ligaments, restored cervical spine stability, and eventually helped restore the natural curve of the neck. This would extend from treating C0 – C5). This is all explained below.

Dr. Hauser narrates the video below, a summary transcript is included.

Video: By the time the patient sought care with us she had pain in almost every body part. She was also previously diagnosed with mast cell activation syndrome, (immunological condition of repeated episodes of the symptoms of anaphylaxis (allergic reactions)). She had dizziness, tinnitus, and a list of other symptoms that clearly indicated that her nervous system was not working correctly.

Signals to the brain convey the wrong information of motion to the brain. Possible cause: Cervical spine ligament damage

  • At 1:45 of this video: This particular patient is very sensitive to any type of motion. The nerves, or more commonly proprioceptors, motion and space sensory receptors that tell the brain about neck motion and the 3D perception of where the head is in space, are embedded within the ligaments of the cervical spine. So when there is cervical spine instability caused by cervical spine ligament damage, the proprioceptors themselves become confused and disoriented and cannot give the right information to the brain. This misinformation results in the rocking, swaying, bobbing disorientation common in Mal de debarquement syndrome.

Loss of natural cervical spine curve

  • At 2:29 of this video: a Digital Motion X-Ray (DMX) image of her lateral cervical spine reveals that she has a loss or total disruption of the natural cervical spine curve. The cervical spine curve is supposed to be lordotic like the letter C and we see in the DMX image that the patient’s curve, does not look like a C but looks more like an S. This is a typical indication that this patient has suffered from ligament laxity and ligament damage.

Offset disconnect between cervical vertebrae

  • At 2:52 of this video: This ligament laxity in the cervical spine has led to an offset between C4 and C5. This indicates that the vertebrae are not together or floating away from each other and this will lead to cervical spine instability.

Digital Motion X-ray (DMX) demonstrates the patient’s neck problems

  • At 3:09 the DMX now shows an x-ray of the patient’s neck in real-time motion. As the patient moves her neck in flexion, C4-C5 instability is apparent. The more she moves her neck in flexion, the worse the instability becomes. (Neck flexion– lowering your chin down to your chest.)

The loss of natural curvature of the cervical spine

  • 3:22. With neck extension, the patient’s “George’s Line” (or the Posterior Body Line) the patient’s neck curve falls into proper alignment. This is the benefit of using DMX motion x-ray. During the patient’s natural neck movements we can see which movements cause problems and which movements do not cause extensive problems. (Neck extension– raising your chin skyward.)
  • 3:45 the DMX demonstrates that when the patient raises her chin skyward or looks forward, her natural curve returns.
  • 3:53 – problems detected:
    • In the DMX open mouth view, we see the C2 spinous process is not in line with the dens, the bony protrusion of the C2 vertebrae. This misalignment has been implicated in many of the problems of dizziness, fainting, loss of balance among other problems. The main symptom in this patient is the terrible motion sickness that she has all the time.
    • When the ligament strength in her neck is restored with Prolotherapy injections, and the proper lordosis in her neck is restored, which we do with various exercises, making her work area ergonomically correct.

More reading

Mal de debarquement syndrome caused by cervical spine instability

Our research

Are Ehlers-Danlos Syndrome Headaches and Migraines Caused by Cervical Spine and Neck Instability?

 

References

1 Steilen D, Hauser R, Woldin B, Sawyer S. Chronic neck pain: making the connection between capsular ligament laxity and cervical instability. The Open Orthopaedics Journal. 2014;8:326-345. [Google Scholar]

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