Finding support for Chiari malformation? Connect with people like you.

Chiari malformation, is usually present at birth and occurs at the back of the head where the brain and spinal cord connect.

There are four types of Chiari malformations:

Type 1 – occurs when the base of the skull and upper spinal area do not form properly. A type 1 Chiari malformation commonly goes unnoticed until problems arise in the adolescent or adult years of life. The headaches most typical of Chiari I malformations are usually located at the back of the head, and are often made worse by exertion.

Type 2 – sometimes known as an Arnold-Chiari malformation, a type 2 Chiari malformation is caused by part of the back of the brain shifting downward through the bottom of the skull. it is seen in infants who are born with spina bifida and can also be associated with hydrocephalus, a condition in which there is an overproduction or lack of absorption of the cerebral spinal fluid (CSF).

Type 3 – occurs when the back of the brain protrudes out of an opening in the back of the skull area.

Type 4 – occur when the back of the brain fails to develop normally.

Children with Chiari I malformations may start to have symptoms as early as age 2 or 3. Some don’t have any symptoms until they are older. Symptoms can appear any time. They may start or get worse after a trauma, physical effort or straining, such as exercising, coughing or sneezing.

Syringomyelia, common with Chiari, is a cyst in the center of the spinal cord that is filled with fluid. The cyst, also called a syrinx, can get larger and longer over time, putting pressure on the spinal cord and causing symptoms. If not treated, it may also eventually cause nerve damage.

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Our mission at Ben’s Friends is to ensure that patients living with rare diseases or chronic illnesses, as well as their caregivers, family, and friends, have a safe and supportive place to connect with others like them.

We’re interested in you as a person, and in your struggles as a rare disease patient.  But we don’t want to know your name or where you live. We won’t even allow you to use your real name when you register for one of our communities. Because when it comes to medical things, anonymity is important in our googly universe.  Your information is never shared, and your activity never tracked by adware.

When Ben’s Friends asks for the country and region you live in, that’s in case your fellow members can recommend local resources and help, and so everyone knows what kind of medical system there is where you live.  That’s important when it comes to giving and getting support. Because we are all about support, and we’re all in this together..

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