Phrenic nerve pacing for congenital central hypoventilation syndrome
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Description
Congenital central hypoventilation syndrome (CCHS) is a rare genetic condition that affects the brain's ability to control breathing. People with CCHS may have difficulty breathing as well as low levels of oxygen and high levels of carbon dioxide in their blood (hypoventilation). Symptoms mostly occur during sleep, but people with severe CCHS can also have symptoms while awake. Most people with CCHS also need a mechanical ventilator to help them breathe. This may be needed all the time or only when sleeping.
In this procedure, an electrode is implanted around the phrenic nerve in the lower neck or chest. The phrenic nerve controls the diaphragm, which is the main muscle used for breathing. The electrode is connected to a receiver that is usually placed in the chest wall. An external transmitter then sends radiofrequency signals to the receiver, causing the electrode to stimulate (pacing) the phrenic nerve. The pacing makes the diaphragm contract. The aim is to help people breathe normally and to have some time without a ventilator, potentially improving their quality of life.
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