Syringomyelia Awareness Social Network (Carion Fenn & Friends)

Syringomyelia & Chiari Malformation Support: A place to share, learn, and support each other.

This can happen to you or your loved ones. Please lend your support by sharing this page, and invite your friends to join. Thank you for your support in raising the awareness of Syringomyelia (sear-IN-go-my-EEL-ya), and Chiari Malformation (key-Ar-ee-mal-for-MAY-shun)supporting those living with SM & CM.
Syringomyelia, also known as SM, is a Syrinx, also known as a tubular filled cyst, that forms inside of the spinal cord. There are many others who are also living with this rare, progressive, incurable, disabling neurological condition and due to the lack of knowledge of this rare condition we must do something to help others. Much research, awareness to the public and in the medical community as well as help for those living with SM is needed to reduce the suffering.
As more people are acquiring spinal cord injuries, more cases of post-traumatic SM are being diagnosed. SM is sometimes progressively degenerative and typically has a slow onset; however, symptoms can rapidly progress due to strain or by trauma to the spine. It can easily yield very painful neurological symptoms of varying intensities and at varying times. Syringomyelia can be acquired from Trauma, or congenital problems such as an Arnold Chiari Malformation.
Chiari Malformations (CM): are structural defects in the cerebellum, the part of the brain that controls balance. When the “tonsils” of the brain stem fall below the base of the skull, it cuts off or blocks the flow of Cerebral Spinal Fluid that runs between the brain and the spinal cord. This fluid is essential in every aspect of the spinal cord and brain as it helps transmit the signals from the brain to the extremities, organs and systems that control the body. Chiari can cause Syringomyelia if not corrected early. There is Decompression Surgery that can be performed on these patients to resolve the flow disruption, however – it does not always resolve the syrinx if one is already formed. Surgery can offer some relief to patients, but nerve damage done to the spinal cord is usually not repairable, so it is referred to as permanent nerve damage.
We need your help in doing so by joining and inviting your friends to join so that we can all help support each other. You don’t have to have Syringomyelia or Chiari Malformation to be a part of this group, we all need to work together to help the SM and CM community. Help show the people who are living with this disorder that they are not alone and help spread the word. It takes all of us to make a difference for tomorrow.
Currently there's no cure for Syringomyelia or Chiari Malformation. Carion Fenn Syringomyelia & Chiari Network: www.syringomyelia.ca or www.chiarimalformation.ca Syringomyelia & Chiari Social Network: www.togetherwearestronger.org