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What is Locked in Syndrome

The “locked in” syndrome occurs when a person loses all ability to move their body and some of the muscles in the face. It is possible despite loss of all voluntary bodily function that some voluntary eye movement is possible and ultimately a form of communication using this remaining eye movement is possible. The locked in syndrome usually occurs when damage to the bottom of the brain (brain stem) occurs. Usually the damage occurs as a result of a stroke, typically a blockage in the artery bringing fresh blood containing the vital supply of oxygen to this area.

The brain stem (see figure1) is a vital part of the brain where all the connecting nerves travelling from the top of the brain (where movement is controlled from) to the body and limbs pass through. So if damage occurs in the brain stem then these connecting nerves can be damaged and will fail to function and no messages from the brain get through to the body. This leaves one completely paralysed.

Fig 1

However because the area above the brain stem is not damaged it means that the brain above the brain stem continues to function normally. So patients can think normally, experience normal emotions, still possess their normal sense of humour and enjoy seeing and listening. Anyone who has had the pleasure of watching or “talking to” a patient with locked-in syndrome using their eye movements will quickly realize that these patients are entirely normal in the way they think and experience emotions including unfortunately pain.

If the damage in the brain stem occurs below the part of the brain stem which controls eye movement (midbrain) it is possible that a patient may still be able to control eye movement and if those around a patient can understanding what eye movements mean some form of communication can be possible by watching the patient’s eye movements (see figure 2). This can be an area of great concern because in the hospital after the damage has occurred doctors, nurses or family may not realise the patient can understand everything that is being said but may not be able to make it known that their brain is still fully functional above the brain stem. Most patients have terrible horror stories of having to listen to those around them having conversations (usually about them) but are unable to respond until somebody realises that the patient is in fact “locked-in” and not brain dead. Fortunately through well published experiences of others doctors are more aware of the “locked-in” syndrome and are always on the look out for it.

Fig 2

Now with nursing care and support (sometimes requiring help to breathe using mechanical ventilation) patients can live much longer.

Bram’s story of having a stroke in the brain stem is remarkable because he has been in the “locked-in” state for more than ten years and because of new communication aids (TOBII) he has found a way of expressing himself better. He has had to endure a tremendous struggle every day but because of his courage and the support of the nurses he is in the fortunate situation of being able to tell you his story.

If you have any specific medical questions about Locked-in syndrome drop Bram an email and he can get me to provide an answer if I am able to do so.

Dr Timothy Harrower

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