My Story

Lately, I've felt called to change someone's life. I'm not sure if there's a reason for it, but I want to change the world. How I'm going to do this I'm not sure about yet, but I figure getting my thoughts out there will help me decide. I'm going to tell you my story first, so grab a cup of coffee and continue reading.


I grew up playing sports, being wild and full of energy, and this all got harder. I had headaches growing up that I couldn't explain. I don't think my parents believed me, and would often get upset with me for missing school because of them. Little did either of us know what was coming next. When I was a senior in high school I knew something was wrong.

My senior year, at age 17, I was getting my headaches much more frequently. Getting up in the morning was hard, and I was dizzy. I remember wrestling with a friend and leaning back and getting this rush that was followed by a dizzy spell. I laid there and looked at my friend who had this blank look on his face, neither of us knew what was happening. After a few minutes I got the worst headache I had ever had.

Being a 'tough' farm girl kept me going, without fail I didn't let this stop my life. I started college and the first night that all the students were on campus they were having a dance and I was going to meet a guy there that I met on facebook during the summer. That afternoon we went out to play football, and I apparently over did it and got dizzy continuously and felt like I was going to vomit all night. Well, I missed the dance. My parents came to campus and checked on me, and all my roommates left me to go to the dance and get drunk. Great friends, huh.

After a few months, I got extremely dizzy and it wouldn't stop like it had before. I called my mom who came and took me to the doctor and diagnosed me with Benign parisoximal positional vertigo. Basically it meant that there were calcium deposits built up in my ears, and when I moved they would drag through my little hairs in the ear (cilia) and cause the dizziness. He recommended an MRI but told me that these exercises would help my dizziness. I think my parents didn't want to get the MRI because 1- they didn't believe me and 2- it was really expensive.

2 months later we decided to get the MRI done because I was having some major headaches. I remember laying there through the MRI and thinking, what if I have a tumor? or a brain aneurysm? Well, after we got home about 30 minutes after the MRI the doctor called. He told me I had an Arnold Chiari Malformation. Just like you, I had no idea what he was talking about. He explained it as best he could over the phone, and my mom and I did a little research too. He asked us to come in the next day to look at the MRI and get more information from him.

An Arnold Chiari Malformation is a rare but deadly neurological disorder that effects less than 200,000 people in the United States.

I was officially diagnosed with an Arnold Chiari Malformation type 1 with syringohydromyelia in April 2007, at 18 years of age.

I was sent to a neurologist in a city nearby, and my mom and I went up there and meet my boyfriend (now fiance) at the hospital. When we finally got into the exam room he kicked my boyfriend out of the room even though I made sure he knew that he was allowed to be in there with me. Apparently he was worried about HIPPA or something. Anyways, he was sure my headaches were caused by my occipital nerve and my solution was to get a new pillow, mattress, etc. He then decided to just check my MRI on a CD and came back and said I needed to go to the neurosurgeon. His credibility went out the window.

My images were sent to Rodchester, and they sent a letter back that stated they were refusing services for 1 of 3 reasons. I don't remember them exactly but bascially it was because they couldn't offer me treatment for one reason or another.

Dr. Menezes from Iowa City agreed to see me, and got me in shortly after he recieved my information. He scheduled me at the end of the day, and knowing how doctors are of course we had to wait quite a while. My dad, mom and I waited over 3 hours and finally got to see the doctor around 6pm. He diagnosed me fairly quickly, and tried to explain things clearly..but of course it wasn't clear...AT ALL!

I had surgery a few months later, September 13, 2007. It went well, and my recovery was quick and problem free. The bottom of my skull was curved inward instead of out like it is supposed to be, that was removed and the top of my spinal cord vertebrae were shaved a bit. All in all it was thought to be a successful surgery. I still have problems, daily...and I'm sure you'll become more aware as you continue to read my blogs.

Being 18, and diagnosed with this condition I had never heard about before was scary. I didn't know what to expect next. Part of my mission is to reach out to the young and newly diagnosed and be there for them during this unsure time. I wasn't sure what to expect, and felt very lonely during the year following my diagnosis and want to be there for others...so they don't have to go through the same thing that I did alone.