Cranio-Cervical Instability (CCI) and Atlanto-Axial Instability (AAI)

CCI is a structural instability of the joint that connects the skull and neck. This instability or imbalance can lead to deformation of the brain stem, upper spine and cerebellum. This can lead to pressure on the brain stem. Stress on the brain stem and nerves disrupts the autonomic nervous system. The autonomic nervous system regulates all vital functions of your body such as heart rate, blood pressure, breathing, digestion and so on. It mainly occurs in combination with Ehlers-Danlos syndrome and other hereditary connective tissue disorders.

CCI is often diagnosed in combination with AAI. AAI is a condition in which there is abnormal displacement between the first two cervical vertebrae. This is caused by a combination of decreased muscle tone of the neck muscles and weakness of the ligaments that strengthen the atlanto axial joint. The bones are less stable and can damage the spinal cord.

This condition has a progressive character and is seriously disabling. It deprives the enjoyment of life and ultimately the condition can be life-threatening. In the end, patients can hardly or no longer tolerate stimuli from their environment. The physical deterioration can make patients dependent on continuous care and help with the most basic things 24/7.

Daan had several examinations in Barcelona, last August. Based on these examinations, Dr Gilete (neurosurgeon) diagnosed unstable cervical vertebrae.

The doctors prefer to postpone the operation as long as possible and will only be performed when there is no other option. Unfortunately, Daan´s complaints intensify which makes the operation necessary.

Myalgic Encephalomyelitis (ME)

Daan was diagnosed with ME at the beginning of 2020. ME refers to inflammation in the brain and spinal cord associated with muscle pain. It is estimated that there are about 27,000 ME patients in the Netherlands (Klein Rouweler, 1999). In many cases, the disease is chronic and can have an erratic course.

It is a very complex disease that affects the functioning of the brain. Furthermore, other physical systems such as the immune system, the heart, blood circulation, energy supply and hormone production are affected as well. The cause is still unknown.

Not the fatigue itself, but the inability to recover from exercise is the core symptom of ME. Other important symptoms are physical and mental exhaustion, long recovery time, muscle pain, trouble concentrating, sleep disturbances, loss of strength, forgetfulness, headache, joint pain, dizziness, trouble seeing, sensitive lymph nodes, inflammation, cardiac arrhythmia, sore throat, disorientation and confusion.

In the Netherlands, there is a lot of uncertainty and little recognition. Due to the current COVID-virus, there is more attention to ME as patients experience similar symptoms.


Ehlers-Danlos Syndromes (EDS)

Ehlers-Danlos Syndromes are a group of connective tissue disorders that can be inherited´ (The EDC Society, 2020). Thirteen different types have been identified within the latest classification, dated March 2017. The most common types are Classical EDS (cEDS) and hypermobile EDS (hEDS).


Orthostatic Intolerance (OI)

People who suffer from OI have difficulty with the upright posture, particularly standing. Some say they are allergic to gravity as this is causing trouble. Gravity causes more blood to flow to your legs and less blood in the upper parts of the body whilst in a standing position. A healthy body and in particular its autonomic nervous system makes sure to get blood flowing through the entire body again. This causes a slight rise in the heart rate but happens so fast our blood pressure remains stable. The autonomic nervous system from people who suffer from OI lack blood flow to their head and heart (Baker, n.d).

Test results show Daan has 27% less blood flowing to his brain whilst sitting at an angle of 20 degrees and even 35% whilst standing. The complaints he experiences are so disabling that he is not able to sit for more than 10 minutes without feeling uncomfortable.