I was diagnosed on March 17, 2011 which happens to be my favorite day of the year, St. Patty’s Day and now my wedding anniversary. I was diagnosed from an MRI that I had on my spine and brain due to migraines and back pain. Originally, I went to the doctor because I had a migraine for 8 days straight. On the ninth day, I decided something had to be done. I had a constant headache from January and each day I suffered with the same, dull, aching headache. My doctor was afraid it was something in my brain so he ordered an MRI. While I waited for my insurance authorization to go through, my back began hurting. That’s when I went back to my doctor and he went ahead and ordered a full spinal MRI, also. The test lasted for nearly 5 hours. They ended up having to do two additional tests while I was in the machine. During this time, the fear I had was that I had a brain tumor. What I didn’t realize at the time, was that although that would be a very terrible thing, the chances of ridding myself of the tumor would have been a lot more simple than this diagnosis could ever be. My doctor called me within 12 hours of my MRI to let me know the news. At that time, I had no clue what “Syringomyelia” was or even how to pronounce it correctly!
Throughout the year I experience a multitude of changes of symptoms. I have experienced nearly every possible symptom associated with Syringomyelia. We were concerned for several months that I was also suffering from Multiple Sclerosis. That was ruled out earlier this year (February). I was relieved to discover that I did not have that dual diagnosis; however, that 5 MRI series indicated a completely separate issue that I was diagnosed with in addition to Syringomyelia. I was diagnosed with Chiari on February 8 this year and was notified that I was not a candidate for surgery on February 22. I’ve had many stressful moments trying to come to terms with this prognosis. There is currently no hope for a cure and we cannot receive treatments to minimize the effects. Once symptoms are present, damage is done and cannot be reversed. My symptoms are pretty difficult to live with from day to day, but I survive and try to stay positive even though I know truthfully it will not ever really get better.
I am no longer scared of having what I have but I do get very frustrated that I cannot do things like everyone else. I cannot parachute this year like I planned on my 30th birthday. I wanted to follow my brother’s tradition of his jumping when he turned 30. This is something I cannot do and it bothers me so much. I feel like I am held back from some things everyone else can experience. I’m beginning to come to terms with this but it’s hard to explain to my bosses. They have a hard time understanding my needs based on this diagnosis and although I have FMLA, I have major fears about being fired because I am sick. I’ve even been “counseled” on this because I needed to be in the office more according to my boss. It literally added twenty tons of stress on me when he told me that statement. Every since that day, I have to go to work whether I am feeling good or whether I feel like I will faint (syncope is one of my symptoms).
On a very positive note, I celebrated my one year anniversary of being diagnosed with Syringomyelia by marrying my best friend. My husband, Justin, has been there through the Chiari diagnosis and takes care of me when I am sick. He literally catches me when I fall and makes sure I have everything I could ever hope for to decrease my symptoms. Sometimes it works, sometimes it doesn't, but he always loves me. I'm very grateful to have him and my parents in my life. Without them, I don't think I could have survived this diagnosis.
My goal is that one day I can be a professional advocate for persons experiencing chronic illness such as Chiari and Syringomyelia. I would prefer to travel around the country informing people of these disorders. Chiari is much more common than Syringomyelia and is more known; however, Syringomyelia causes quite a bit of damage to our spinal cords and can paralyze or even kill us if we are not careful. Bobby Jones, famous professional golfer, actually died from Syringomyelia. Research has come a long way, but there is no cure for either Syringomyelia or Chiari. I hope that I can raise money for the cause one day. Keep us in mind if you have money you would like to dedicate to a charity. I know of several organizations that could make your money go to great use for patients like me and several of the people I know and love suffering from this chronic illness.
Stay strong, live life, be bold, FIGHT BACK! -Misti
