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Chantal’s phatology

Her neck

Chantal has suffered a lot of damage to her neck due to earlier incorrect diagnoses. Because of these diagnoses, she had to undergo the wrong treatments. As a result, her situation has deteriorated greatly.

Atlanto Axial Instability (AAI) is instability of the first and second cervical vertebra. The ligamentary connections are affected and loosened in such a way that the joints connecting the head and neck have become overly mobile. If these ligaments are stretched too much by rotation, they can cause kinks in the blood vessels, causing blood flow problems to the brain. Chantal has a lot of problems with this, slow movement development, headache and limb weakness are some of the symptoms.

Cranio Cervical Instability (CCI) is instability between the head and neck. This is a type of loose ligament disorder. This condition is related to EDS. CCI causes injury to the nervous system. The ligaments between the skull and spine should limit unsafe movements, but this is no longer possible with CCI. Nerve damage occurs due to unstable ligaments, which are responsible for poor coordination, learning difficulties, headaches, awkward movements and slow development of movement skills. Eventually this will continue in the upper spinal cord and the brainstem and can cause the brainstem to come under pressure, for Chantal this distance is only 0.5 millimetre before her brainstem is getting oppressed. Once this happens her vital functions will be under pressure and could become fatal.

Hind Brian Hernation is a hernia of the rear brain. This is often mistaken for Chiari. Yet this is slightly different for people with EDS. The cerebral tonsils have fallen through the back of the head. The limit is 5 mm. At Chantal this is 9.4 mm. Symptoms include: incontinence, loss of strength of the arms and legs, paralysis of the arms and legs, sensory disturbances, disturbances in coordination and balance, respiratory problems, sleep apnoea, speech disturbances, reduced swallowing reflex, altered voice, wobble and trembling eyes.

She also has Cervical canal stenosis. Due to the wear on the facet joints they have become larger and the ligament is thicker. As a result, the spinal canal has become too narrow for the nerves

Retrolisthesis grade I, C5-6 a retrolisthesis is a vertebra that is no longer pushed away in its own place between the other, but by damage between the vertebrae. At Chantal, this retro-thesis is very unstable. The vertebra can press deep into her nerves and spinal cord. There is also degenerative arthritis. Mild retrolisthesis is in C2-3 and C3-4.

Modic type II, pathological changes of the neck vertebrae. Both in the vertebral body and in the end plate of the adjacent disc. These are chronically inflamed. There are also changes in the bone marrow, with fat replacement of what used to be red cellular marrow. The bone marrow has been replaced by visceral fat, which is normally found on the hips or abdomen.

Mild scoliosis to the right. This means that Chantal curves her neck vertically to the right.

Chantal is fighting with multiple syndromes and their complications. We will briefly explain what this means for her.

Chantal is fighting with multiple syndromes and their complications. We will briefly explain what this means for her.

Chantal has Ehlers Danlos Syndrome (EDS), the hypermobile variant. EDS is a connective tissue disease. The connective tissue is actually glue of the body. Connective tissue is known as collagen. Collagen ensures that the bones, muscles, tendons, ligaments, organs and skin stay on the right spot in your body. Unfortunately, this is not the case with Chantal.

This manifests itself mainly by getting out of the bowl and moving away from the neck and back vertebrae, the right shoulder, hip, knees, ankles, wrists and hands. Sometimes turning around in bed is enough to get a vertebra dislocated. At least 10 dislocations and / or sub dislocations occur every day. Healthy connective tissue is like a non-cooked spaghetti, hard and firm. In people with EDS, there are pieces of connective tissue in between, which can be compared to overly cooked spaghetti strings. These strings can occur anywhere in the body of someone with EDS. At Chantal there is an upright MRI of the neck made in London. This clearly showed that her connective tissue is in a very bad condition. She experiences the daily consequences of this. When Chantal must be treated, examined or operated on, it is a requirement that the specialist is familiar with EDS. Unfortunately for Chantal, her specialists are located throughout the country and even abroad.

EDS will always remain a nasty disease and will not improve after surgery.

The following diseases will benefit from the operation:

Chantal also has phybromyalgia (FM). This was established with her early in her childhood. FM literally means pain in connective tissue and muscles. It is often referred to as soft tissue rheumatism. It is a chronic pain syndrome, in which Chantal suffers from muscle and soft tissue pain / stiffness, fatigue, sleep disorders, headache, fears, allergies, temperature fluctuations, intestinal complaints, memory and concentration disorders and depression.

Chantal has also been fighting for years with (ME / CFS) Myalgic Encephalomyelitis. This is better known as Chronic Fatigue Syndrome. It is also a multi-system disease, which shows large overlaps in Chantal with POTS and EDS. Chantal is troubled by Post-Exertional Malaise (PEM), this is also called exercise intolerance. This occurs after cognitive, physical or emotional exertion. The PEM is difficult to prevent, since the boundaries you cross are not always controllable. It is already caused when Chantal gets too much pain due to dislocations or when she has to talk to a doctor for too long. With Chantal PEM shows itself as a tiredness that is so intense that she cannot sleep because of it. It can also happen that she gets overwhelmed in her head and because of this she cannot tolerate any light or sound, cannot read or talk.

Chantal also has Postural Orthostatic Tachycardia Syndrome (POTS). When she sits down with her legs down or when she stands up, her issues are already playing up. She becomes light in her head and can no longer think properly. Her heartbeat rages like crazy. Other systems also play a role. She starts to sweat; her digestive system responds less or does not respond at all anymore. Chantal gets blue legs and hands and a white face. Chantal also has many complaints that are not dependent on position. POTS is often highly invalidating. At Chantal this has been overlooked by many cardiologists since she was 17 years old. It has recently been recognized. Now she receives medication for her heart and blood vessels. She recently has been examined to see how much blood enters her brain if her body were in lying or standing position. Unfortunately, this research showed that 30% less blood enters her brain while standing. This blood is essential because it provides the oxygen that the brain needs to not die. The heart also receives double the blood that does not reach the brain. We could call this, not congenital brain injury (NAH).

Help Chantal live again

Chantal needs surgery, if she wants to be able to see her daughter grow up and enjoy life. Without surgery, this means the end for her. Chantal lays in a dark, low-stimulation room, dreaming of how her daughter will grow up. They have never had a date together or a family outing with the three of them.

With this surgery she will no longer have to lie in her bed for 24 hours but will be able to return to normal life for at least 50%. Going out to get some groceries herself, go into the park or do the dishes. This is only possible with surgery. Money is needed for this surgery in Barcelona. A lot of money, which she doesn’t have. That is why the Chantalwilleven (Chantalwantstolive) Foundation was established to give Chantal her life back.

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