My name is Breanna and I was diagnosed with Chiari malformation and Syringomyelia after a car accident in 2004. For those of you who are new to those words, a very simple explanation is Chiari is where your skull didn’t leave enough room for your brain, and Syringomyelia is where the fluid that is supposed to be around your spinal cord, gets forced inside your spinal cord, making something like a water balloon. What makes these conditions so life altering for some patients is that there can be a build up of pressure that causes problems as it presses on your brain and spinal cord, creating any number of symptoms. The most common symptom is chronic, severe pain.
In 2005, they did surgery to remove part of my skull, to help relieve some pressure, not knowing at the time that I had a third condition call Ehlers-Danlos syndrome. EDS creates problems with connective tissue, and one of those can be an excess build up of scar tissue. So in 2008, brain surgery had to be preformed to remove scar tissue that had built up from the first surgery. I have since had 2 more brain surgeries for the same reason.
Then they found that my spinal cord was attached at the bottom of my spine, instead of hanging freely like a normal one would be. It was pulled so tight that it was affecting my brain stem, so it had to be cut loose. Which of course causes scarring, so that surgery was repeated a second time.
Now there seems to be a never ending cycle of surgery and recovery. However, in-between all that. I am a pianist, a vocalist, and most importantly a wife. My husband is an artist, and I am learning to paint and draw so we can do art together, even if my stuff looks like a kid made it, and his looks like it should be published in an art magazine or displayed at an exhibit. Even when my pain keeps me from playing piano or singing, I find things I enjoy. Right now I make jewelry, because it is a task I can do at my desk, even when I’m in my wheelchair, and it doesn’t require any strength or repetitive motions and I can work on it off and on as I am able.