ABOUT

DANDY-WALKER CYST

Dandy-Walker Cyst comes by a few different names: Dandy-Walker Deformity, Dandy- Walker Cyst, Dandy-Walker Syndrome, DWM, Hydrocephalus, Internal, Dandy-Walker Type, Hydrocephalus, Noncommunicating Dandy-Walker Type, Luschka-Magendie Foramina Atresia.

The frequency of this condition according to NORD, is approximately 1 in every 2,500 to about 3,500 births in the United States. This condition affects more females than males.

This particular condition is formed in the womb and involves a brain deformity. The area affected is the cerebellum. According to Berkeley’s Psychology Department, the cerebellum handles three functions: language, coordinating movement and thought coordination. The cerebellum, “looks quite small but is jam packed with neurons…well over half the neurons in the central nervous system,” said a cognitive neuroscientist at Berkeley, Richard Ivry. The fourth ventricle surrounds the cerebellum that allows fluid in and out of the brain.

The National Organization for Rare Disorders (NORD) states, “The symptoms of Dandy-Walker Syndrome, typically include developmental delay, low tone (hypotonia), or later high tone (spasticity), poor coordination and balance (ataxia), and sometimes enlarged head circumference, and increased pressure in the skull due to hydrocephalus.” Hydrocephalus is when there is a large amount of fluid in the skull and is usually located at the nap of the neck where the skull and spinal cord meet. NORD also states, “The age at diagnosis varies depending on the onset and severity of hydrocephalus.” After birth, this condition can be found through the use of an MRI, CT Scan or an ultrasound. Before the baby is born, this condition can be found through the use of an ultrasound or with a prenatal MRI.

Dandy-Walker at times, is not just associated with brain malformations. The Dandy-Walker Alliance states, “Dandy-Walker is frequently associated with disorders of other areas of the central nervous system including: absence of the corpus callosum, malformations of the heart, face, limbs, fingers and toes. Many people with this condition also can have respiratory issues.

Hydrocephalus is the part of this condition that is somewhat treatable. NORD states the treatment process as, “surgery to insert a tube to redirect the fluid that surrounds the brain and to assist fluid drainage into other parts of the body that can absorb the fluid.”

Some people with this condition need additional therapy with physical therapy or special education processes to help with their cognitive processing. NORD states that families with children with this condition should seek some counseling in order to understand the condition’s affect on their child and how he or she processes information.

 

References: http://psychology.berkeley.edu/news/coordinating-movement-language-and-thoughts-expanded-role-cerebellum

https://rarediseases.org/rare-diseases/dandy-walker-malformation/    http://dandy-walker.org/

SOCORRO

What does Dandy Walker Cyst mean to you?

Socorro said her disability includes cysts on her brain stem, which affects day-to-day functions like speaking and walking. She’s afraid of heights, and she sometimes behaves a little differently than other people. She sometimes trembles a little when she walks, she said, which means that people need to slow down and sometimes hold her hand to help her move. Sometimes she wishes she hadn’t been born with a disability, she said, as she would like to go to college.

What do you want me to know about you?

Socorro said she just wants people to know that she is a good person.

What is the best way to communicate with you?

Socorro wants people to talk to her just like they would to anybody else, she said.

How do you want the community to respond to your disability?

Socorro said she doesn’t want the community to treat her as if she is any different from anyone else.