The story of Mandy
I spend my life medicated, but there is still pain; a lot of pain. It is unclear if I was born with or if I acquired Chiari Malformation through a traumatic head injury. I was diagnosed with Chiari Malformation and Syringomyelia at 23 and it has been like living a life with the air slowly evacuating. Normal activities get harder and harder each day. Chiari Malformation is a condition where the cerebellum (the body’s center of balance) gets squeezed out of the skull into the spinal cord and puts potential lethal pressure on the brain stem because it can interrupt cardiac and respiratory functions. Both which are necessary to sustain life. There is a whole laundry list of symptoms that accompanies a Chiari diagnosis including: debilitating headaches, double vision, tachycardia, dysphasia, loss of bladder and bowel control, neuropathy, vertigo and syncope. The only treatment is brain surgery. I have had five.
Syringomyelia is a chronic disease of the spine that can be found with Chiari patients, but you can have Chiari without Syringomyelia and you can also have Syringomyelia without Chiari. It is a condition where the cerebral spinal fluid gets pushed inside the spinal cord, making a tube like structure, which interferes with all the nerves that run through the spinal cord. As the tube grows, Syringomyelia threatens paralysis for the patient. I think this is one of my greatest fears.
Later on from my original diagnosis I was diagnosed with Ehlers Danlos Syndrome, another rare disease, that compounds my struggle with Chiari. It is a condition where your collagen, which is the body’s connective tissue, fails to do it’s job correctly. I have frequent joint injuries and poor wound healing, which becomes a problem when I am recovering from brain surgery. I have broken my foot just by walking and dislocated my shoulder by lifting a grocery bag. Our connective tissue is everywhere. Ehlers Danlos Syndrome can be very challenging to handle.
About two years ago I was diagnosed with Trigeminal Neuralgia another condition of the brain. It is a condition of the fifth cranial nerve or the trigeminal nerve. It is strictly a facial pain condition. It can be triggered by the slightest stimuli. A light fall breeze is traumatic now, brushing my teeth, talking, yawning, touching my face, kissing, eating, laughing are a few of the triggers that set off the nerve. The pain is similar to hot acid melting through my flesh down to the bone. It lasts a couple seconds to a couple of minutes each time. I have had two brain surgeries to treat the pain and I am scheduled for one in January.
Like I said, I spend my life is medicated, but there is still pain.