Medical Zebra's

Ehlers Danlos Syndrome

Do you experience any of these symptoms:

Severe headache and neck pain



nausea and/or vomiting



difficulty swallowing

visual disturbances

ringing in the ears

sleep apnea

impaired fine motor skills

and/or muscle weakness?

If you do, please continue reading.

You may have Ehlers-Danlos Syndrome and the resulting cranial settling.

Ehlers- Danlos Syndrome (EDS) is a genetic disorder affecting every connective tissue in the body. The body of an individual with EDS cannot properly form collagen, the "glue" that holds the body together. The resulting weakness causes many debilitating symptoms and an array of disorders may accompany EDS. Individuals with EDS can also have Cranio-Spinal Instability (CSI), a lack of stability of the neck and skull. Because of this lack of stability the skull may sink down onto the brain, forcing the cerebellum out of the skull creating a condition called cranial settling. This condition can mimic Chiari 1 Malformation (CM1). The resulting pressure on the cerebellum and the brainstem progressively damages both structures over time. In addition to this, the odontoid bone in the neck, due to lack of stability, may push backwards into the brainstem, causing further damage. The cerebellum controls the body's sensory processing center. The brainstem controls the autonomic nervous system, or all the body's functions that you do without thinking about. Dysautonomia, or the dysfunction of the autonomic nervous system, often results from damage to these vital parts of the brain. This can affect all of the body's organ systems. All of these disorders can occur in conjunction with each other, and combined they can cause all the symptoms listed above and many more.

TitleCranio Spinal Instability

The weakness in the body's connective tissues that is caused by Ehlers-Danlos Syndrome(EDS) may cause a lack of stability of the neck and skull. This lack of stability is called Cranio-Spinal Instability(CSI). In CSI, the bones in the neck are able to move out of their proper positions, tissues can sag down out of place, and spinal fluid flow may be impaired. The bone and tissue movement is often noticeable only when an individual with CSI is in an upright position and the bones and tissue return to their normal positions when the individual returns to a horizontal position. In severe cases, CSI may be accompanied by cranial settling, which is discussed on the next page.

Quick Identification

Symptoms: Cranial settling

Diagnosis: Craniospinal Instability is NOT visible on a conventional horizontal MRI/X-ray/ ect. It is normally only visible when the patient is upright, and even then may not be visible

:) Thanks for the 'bump'. How do you KNOW what you have though? And what difference does it make? They all have very similar symptoms.... ?

Ah... OK. Makes sense.

Definitely need to have EDS and POTS testing already have Chiari 1 . I have tachycardia and chest palpitations and a holster monitor for a week showed nothing. They wanted to do a tilt table test but now I don't remember whey they didn't.

This is interesting information now I wondering if I could possibility have POTS, EDS or CSI. I have a follow up appointment with NS this week so I will ask if I can be tested for this. Thanks for sharing this information.

:smiley: hahahaha Beeba!