Anyone have any experience with Chiari Malformation - Type 1 (especially in children)? Liam was just diagnosed?

Chiari malformations are structural defects of the cerebellum and brainstem, in which these parts of the brain protrude through the base of the skull and into the spinal canal. Symptoms are the result of pressure on these parts of the brain; the cerebellum controls aspects of balance and coordination, while the brainstem controls basic functions such as breathing. Type I Chiari malformations are the least severe; only the lower portions of the cerebellum protrude into the spinal canal, without brainstem involvement.

Many cases of type I malformation are asymptomatic and go undiagnosed until they are discovered during testing for some unrelated condition. Specific symptoms include headache, difficulty swallowing, arm pain, hoarseness or other voice changes, numbness, changes in vision, gait disturbance, and brief loss of consciousness. Chiari malformations are also associated with an increased risk of spinal curvature (scoliosis or kyphosis) as children mature.

Chiari malformations without symptoms usually require no immediate treatment, although symptoms can progress if the flow of cerebrospinal fluid to the brain and spinal cord is blocked. Some symptoms, such as pain, can be treated on their own, but there is little else in the way of nonsurgical treatment. Surgical options for definitive treatment include decompression of the skull base and spinal canal as well as placement of a shunt to drain excess fluid from the brain and/or spinal cord.

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