Hello everyone! I just want to start out this blog by saying how much this blog means to me. After I was diagnosed with CM, I of course wanted to know more information about this condition so I turned to google. WebMD was extremely great with giving me medical information and statistics, but I wanted to know stories of real people who have suffered or are suffering just like I am. I started reading a bunch of blogs regarding Chiari and I loved how personal it was. It helped me wrap my head around what was going on, and that everything I was feeling emotionally and physically was completely normal. So that's when I decided to create my own blog, to record my own story, because every story is different and unique. & here we are :)
I can't recall when symptoms first started, but I do remember complaining of consistent head rushes (or head surges as I like to call them) since September of 2015, even though I consciously know that they were happening before this. At this point, they were only about a few seconds long in duration and would go away right after that, so I didn't really pay too much attention to them. However, by the time I came back to Cornish to start spring semester, these head surges were getting pretty awful. They would last longer than a few seconds and some even started to last hours long. The pressure that was happening inside my skull was unbearable and normal headache medicine wasn't doing the job.
For a while, that was my only symptom, just the head rushes. Things changed one Friday in February. I was in a late night rehearsal when all of a sudden I had a huge head surge and my vision went black. Luckily it only went away for about 5 seconds and then slowly came back, but it scared me half to death. After I came to terms, I noticed that my entire right arm was extremely numb and in a ton of pain. A few days later my arm came back to life, but the following weeks left me with random blurry vision here and there and numbness and tingling down the right side of my body. As you guys know, I am a dance major, and during this time I had a few performances on stage. The stage lights killed my head and made my vision go black multiple times in just a single routine. I needed answers.
Finally on March 23rd, after battles with the darn insurance company, I was able to get my MRI. The very next day, I get a call from my specialist at Swedish saying he needed to see me on Monday with a family member. Great. So I walk in to his office Monday, March 28th and my doctor shows me the images of my brain. There was a lesion on my brain looking as if it could be early onset MS or that I had a small stroke at some point in my life. The images also showed something called Chiari Malformation. My cerebellum was seeping into my spinal cord cavity. After the first specialist gave me the maybes of the results, he sent me down two floors where he had an appointment set up for me with the head of neurology, Dr. Delashaw. He took a look at my images, I told him all of my symptoms, and he told my mom and I that we should take care of this CM issue. He told me I needed to have surgery to remove part of my skull. He also told me that I will have check up MRIs to follow that lesion to make sure it isn't anything.
So there we have it. Chiari Malformation is what has been causing me all of this pain and suffering and on May 9th, I will have surgery to fix it all. Now, I have never had a single surgery before (unless you count getting your wisdom teeth out). I am definitely scared, but I am so BEYOND ready to be able to live my life fully again. I love having answers, I love knowing what I have, and I'm very excited to be able to start advocating and spreading awareness for this condition that so many doctors don't even know about.
Here's to new beginnings.
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