Video and Chiari Journey by Angel Ladner
This video was posted on my Facebook group “Chiarians Raising Their Voices To Make People Aware” by Angel. She was officially diagnosed with Chiari in February of 2012. She had her decompression surgery and then skull to C2 fusion in August. She was also diagnosed with EDS and a Tethered Cord. She had TC release on November 5th, so she is still very much recuperating. Angel made a video of her Chiari journey and thankfully shared it with us as I’m doing with you. Please take a few minutes to watch this amazing womans journey!
EDS (Ehlers-Danlos Syndome)-
Individuals with EDS have a defect in their connective tissue, the tissue that provides support to many body parts such as the skin, muscles and ligaments. The fragile skin and unstable joints found in EDS are the result of faulty collagen. Collagen is a protein, which acts as a “glue” in the body, adding strength and elasticity to connective tissue.
Ehlers-Danlos syndrome (EDS) is a heterogeneous group of heritable connective tissue disorders, characterized by articular (joint) hypermobility, skin extensibility and tissue fragility. There are six major types of EDS. The different types of EDS are classified according to their manifestations of signs and symptoms. Each type of EDS is a distinct disorder that “runs true” in a family. This means that an individual with Vascular Type EDS will not have a child with Classical Type EDS.
FOR MORE INFORMATION VISIT EHLERS- DANLOS NATIONAL FOUNDATION AT: http://ednf.org/
What is Tethered Spinal Cord Syndrome-
Tethered spinal cord syndrome is a neurological disorder caused by tissue attachments that limit the movement of the spinal cord within the spinal column. Attachments may occur congenitally at the base of the spinal cord (conus medullaris) or they may develop near the site of an injury to the spinal cord. These attachments cause an abnormal stretching of the spinal cord. The course of the disorder is progressive. In children, symptoms may include lesions, hairy patches, dimples, or fatty tumors on the lower back; foot and spinal deformities; weakness in the legs; low back pain; scoliosis; and incontinence. This type of tethered spinal cord syndrome appears to be the result of improper growth of the neural tube during fetal development, and is closely linked to spina bifida. Tethered spinal cord syndrome may go undiagnosed until adulthood, when pain, sensory and motor problems, and loss of bowel and bladder control emerge. This delayed presentation of symptoms is related to the degree of strain placed on the spinal cord over time and may be exacerbated during sports or pregnancy, or may be due to narrowing of the spinal column (stenosis) with age. Tethering may also develop after spinal cord injury and scar tissue can block the flow of fluids around the spinal cord. Fluid pressure may cause cysts to form in the spinal cord, a condition called syringomyelia. This can lead to additional loss of movement, feeling or the onset of pain or autonomic symptoms.
FOR MORE INFORMATION VISIT NINDS TETHERED SPINAL CORD SYNDROME INFORMATION PAGE AT: http://www.ninds.nih.gov/disorders/tethered_cord/tethered_cord.htm
If you are interested in sharing your Chiari story please visit our Facebook Group “Chiarians Raising Their Voices To Make People Aware” https://www.facebook.com/groups/shareyourchiaristory/ or email us at firstname.lastname@example.org