This is a list of some of the terms you may come across when speaking to the medical profession after being given a diagnosis of Sturge Weber syndrome.
AEDS – Anti-epileptic drugs used to treat epileptic seizures
Angioma – Can affect one or both sides of the brain and impair blood flow
(Also called; Birthmark, Extra layer of blood vessels, Extra abundance of capillaries, Vascular malformation, Leptomenigeal angioma)
Amygdala – controls emotional memory recalling and regulation
Aura – a term that people use to describe the warning they feel before having a seizure
Aspirin – a medication used to thin the blood
Anterior – the front part of the brain
Atrophy (also called volume loss) – Loss of brain tissue
Botulinum toxin (Botox) – Used to treat spasticity and dystonia to reduce muscle activity and tightness
Brain Atrophy – the loss of brain cells called neurons. Atrophy destroys connections that help cells communicate. It is the result of damage to the brain
Bilateral – when a seizure starts in one area of the brain then spreads to both sides of the brain
Cannula – a thin tube inserted into a vein or body
Calcification – deposits of calcium in blood vessels within the brain
Cerebrum – The largest part of the brain and is divided into two parts, the left hemisphere and the right hemisphere.
Corpus Callosum – The connective pathway between the two cerebral hemispheres
Cortex – The outer layer of the cerebrum, often referred to as the Cerebral cortex
CT Scan – Computed Tomography scan. A medical imaging technique that uses X-rays to take detailed images of inside the body
Dystonia – a movement disorder in which a person’s muscles contract uncontrollably
Epilepsy – a condition where sudden bursts of electrical activity in the brain cause seizures
EEG – Electroencephalogram. A test that detects electrical activity in the brain.
Frontal lobe – largest of the four lobes. Responsible for motor movement and responsible for higher cognitive functions such as memory, emotions, social interaction and problem solving
Focal – a seizure that occurs in just one area of the brain
GNAQ – The gene that changes during pregnancy causing Sturge Weber Syndrome
Hemispheres – the two halves of the brain
Hemi – one sided or half
Hemiplegia – a condition caused by brain trauma or injury that leads to weakness or loss of use on one side of the body. The degree of hemiplegia depends on the location and extent of the injury
Hemianopsia or Hemianopia – Visual field loss on the left or right side of the vertical midline
Homonymous or Hemianopsia or Homonymous Hemianopia – Visual field loss on the same side of both eyes
Haemangioma – a collection of small blood vessels that form a lump under the skin.
Hemispherectomy – the total or partial removal or disconnection of one half of the brain. It is typically done in children and occasionally adults
Hemisphorotomy –
Hippocampus – a brain structure embedded into the temporal lobe.
Limbic System – the part of the brain involved in behavioural and emotional responses
Lobe – an area of the brain. There are four main areas called; frontal, occipital, parietal and temporal
Lumbar Puncture – the procedure of taking fluid from the spine in the lower back through a needle
MRI – Magnetic resonance imaging. – A type of scan that uses magnetic fields and radio waves to create very detailed images of inside the body.
Motor – where there is muscle activity such as jerking, loss of muscle tone or repeated movements
Non-motor – Where there is no muscle activity
Neurocutaneous – disorders that affect the brain, spinal cord, organs, skin and bones
Posterior – the back of the brain
Sats monitor – a medical device used to measure oxygen saturation of a patient’s blood
Seizures – A sudden uncontrolled electrical disturbance in the brain. It can cause changes in behaviour, movements or feelings and levels of consciousness
Seizure onset – the area of the brain that the seizure starts
Status Epilepticus – a seizure lasting 30 minutes or more
SEEG – Stereo Electro-encephalography or SEEG is a specialised EEG (brainwave) test that is performed for some patients who are being considered for epilepsy surgery. The SEEG test helps to pinpoint where epileptic seizures start in your brain.
Occipital lobe – the part of the brain responsible for interpreting information from the eyes and turning it into how the person sees it
Parietal lobe – responsible for processing sensory information it receives from the world
Port wine stain (Nevus flammeus) or birthmark – a discolouration of the human skin
Postictal – The state of consciousness after a seizure. Usually lasts between 5-30 minutes but sometimes longer in the case of a longer or more severe seizure. Can be characterised by nausea, confusion, drowsiness, headache or migraine.
Todd’s Paralysis or Paresis– temporary weakness following a seizure. Can last seconds, minutes or hours.
Temporal lobe – responsible for creating and storing both conscious and long-term memory
TIA – Transient Ischaemic attack (also called mini stroke). Where the blood supply to the brain is temporarily disrupted.
Vascular – relating to or affecting blood vessels