September 13, 2017
Here in the shop we’re going to start a regular blog highlighting the rarer diseases in our collections.
Since September is Chiari Malformation Awareness Month, we decided to start there!
Chiari malformation is a condition in which the brain tissue (specifically the cerebellum) protrudes beyond the skull and into the spinal column, resulting in compression of both the brain and the spinal cord. This pressure can disrupt the normal movement of cerebrospinal fluid (CSF).
Chiari malformation can be classified into three types, with the second and third types being pediatric.
Type I develops as the skull and brain are growing, so symptoms may not occur until early adulthood.
Type II (also called Arnold-Chiari) is found during pregnancy by ultrasound scans, though sometimes the condition isn’t noticed until after birth, even into early infancy. This type is also closely related to Spina Bifida.
Type III is the rarest form, and regarded as the most severe.
It’s possible to have a Chiari malformation without symptoms, so sometimes the condition is only located when tests are performed for other problems.
In addition, since Chiari affects the nervous system, there is a range of possible symptoms. Common ones, however, include severe headaches, often occurring when there’s a strain such as a sneeze or a cough.
Other symptoms connected to Chiari are neck pain, problems with balance and dizziness, vision and speech problems, and difficulty swallowing.
Less regular are more severe spinal related symptoms such as scoliosis. Breathing problems are also possible, though not frequent.
The most common way to diagnose Chiari is through scans such as MRIs or CTs.
Lately, though, the definitions of Chiari malformation are undergoing changes, and doctors are using a multidisciplinary approach that includes patient reported symptoms and neurological exams.
Treatment for Chiari depends on the severity of the disability. If there are no symptoms present, doctors typically recommend monitoring through regular exams.
If the condition is interfering with quality of life, worsening, or impairing the nervous system, however, doctors may recommend surgery – either the most commonly performed decompression surgery or alternatives such as placing a shunt to direct the flow of CSF.
Unfortunately, there isn’t a lot of current study data on the frequency of Chiari in the general population, and very little data on family linkages.
No test currently exists to tie a certain gene to Chiari malformation and the possibility of passing the condition on is unknown.
If you feel like you are experiencing the symptoms of Chiari, or are having any other neurological symptoms, we strongly recommend you visit your doctor. For more in-depth information on Chiari, visit www.conquerchiari.org.
If you’ve already been diagnosed and are looking for more support, we invite you to join the hundreds of other Chargies (Our alternative term for Spoonies, derived from the Battery Analogy – more info HERE!) on our Facebook support group, The Unchargeables!
We’re a community open to all chronic illness warriors including those with rare diseases and those who have yet to be diagnosed.
If you’re looking for ways to represent or raise awareness about this condition, check out the Chiari Malformation section in the shop for exclusive gear.
September 10, 2019
September 07, 2019
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