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Locked-in syndrome (also known as LIS) is a condition that leaves people fully conscious but completely incapable of speech or movement. Astonishingly, once communication is established, many people who have it want to continue living.

Especially in younger people, under 45 years of age, the events that lead to locked-in syndrome occur over several days or even several weeks. Maybe there's some kind of accident that causes what seems at first to be neck strain. There could be a strange headache after having hair washed. There could have been dull pain after swinging a golf club or a hockey mallet or a tennis racket. There could have been persistent pain after lifting a heavy object.

Maybe there is headache. The kind of headache associated with the vascular events that lead to locked-in syndrome tends to be at the base of the head, although any kind of persistent headache, in the same part of the head each time, coupled with pain at the base of the skull, is consistent with these events.

In older people, locked-in syndrome is typically a consequence of stroke. The chronic conditions that lead to stroke can be much more insiduous, harder to detect. Many years of uncontrolled high blood pressure, especially when readings range 180/130 and higher, stresses arteries all over the body, including the brain. The linings of the arteries in the brain can be prone to dissection, peeling away so that the brainstem, which is served by blood vessels arranged in a loop. However, even if injury or chronic blood vessel disease has caused the catastrophic event that leads to locked-in syndrome, at least for the first few hours, it's possible to save the brainstem.

What are the signals you need treatment right away?

Anytime there is sudden

  • Loss of speech,
  • Loss of movement on one side of the body,
  • Loss of vision, especially loss of vision on just one side of the body, or
  • Sudden loss of consciousness,

it is important to get to a well-equipped emergency room right away. It is often possible for doctors to restore circulation with intra-arterial or intravenous (IV) recombinant tissue-type plasminogen activator (rt-PA), or "clot busters". These drugs restore the flow of blood in the brain, but they should be given in the first 90 minutes after the clot forms, and they cannot be given more than seven hours after the clot forms. If you are already on blood thinning medications, such as Plavix (clopidrogel), usually you cannot be given these kinds of drugs, but you are also less likely to have a large blood clot form.

Of course, if you are the person experiencing these symptoms, you may not be able to call for help. The American Heart Association and the American Stroke Association recommend that everyone learn how to respond to possible strokes by memorizing FAST:

  • F: Face drooping. Does one side of the face droop or is it numb?
  • A: Arm weakness. Is one arm weak or numb?
  • S: Speech difficulty. Is the speech slurred or incoherent?
  • T: Time to call 911 when someone is experiencing these symptoms.

Getting a friend, a coworker, or a loved one to treatment fast can make a huge difference, sometimes even preventing locked-in syndrome after a brainstem stroke.

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