My Battle with Chiari Malformation1

This is not easy for me, most of you who know me well know Im very independent and stubborn! Well that's exactly how things got to where I am. So here is how it started!
A few months ago I started getting some of the worst headaches of my life! They progressed fast! I started blacking out, falling and getting so incredabily dizzy. But despite all this I knew one thing, I have to keep working! I have two amazing little girls, Chloe who just turned 13 and Soifa who is 7. I am our primary source of income, I do not recieve any benefits from the government. So in short missing a day of work hits us hard. But my drive to keep pushing through all the symptons and "deal with it" are those two little girls! I saw my family physician who ordered an MRA (a scan of your major arteries) of my brain. Took some time but the results were negative. In a matter of a month the symptoms got even worse! At this point I was losing feeling in my left arm, the headaches were causing my heart rate to drop extreamly low, I had so much pain in my shoulders and down my arms it was literally making me unable to do anything. The scary part is I started getting very dizzy with no warning. I was driving to work and had to pull over quickly because with no warning everything was spinning. This leads us to the day that not only changed my life, but my kids and my family. On June 26 I finally gave in and went to the ER at Grant. As I expected they were unsure of what was causing my issues and were about to proceed to discharge me. It was by the grace of God and my soon to be Neurosurgeon that he caught the rate of how low my heart was dropping and stopped my discharge. I will never forget him looking me in the eyes and saying, "I promise we are going to figure this out and fix it!" That night started the process of 7 MRI's. At 3 a.m. my amazing nurse Bonnie walked in and said, "Well my lady we have to keep your bed at a 30 degrees and Neurosurgery is on their way up to see you. But Im going to sit right here with you, if thats ok and stay." I knew at that moment something was wrong. Dr Alex walked in and looked at me and reminded me that he did promise to figure this out and fix it, and he did. He said Katye you have a congenital brain disease called Chiari Malformation type 1. I had no idea what this ment at all, my first question was ok what can I take for this and I cant miss work rent is due in a few days. He literally laughed at me, but he was very sincere in explaining to me what this was and how rare it was. When he starting listing off the symptoms it causes I was so excited that someone just reasured me that it was not "All in my head" or "It will pass, take some tylenol". But then came the bad news, I required a major brain surgery to fix it and had I not came when I did it would have been fatal and it would have happened within days. I will never forget the look of emotion, fear and love on her face when my Mom walked in the room after talking to the Neuro Trama team. She was my rock, my mother was the reason I was not scared. She literally took on not only all of my worries and fears, but she handeled them like a Boss! She never left my side, and while doing all of this she still had her own life and family to care for, but now Chloe too. The 27th of June was the day of my surgery. She stayed with me through pre-opt and as far as they would let her. She was also the first face I saw waking up feeling like somebody literally cut my head off and reattached it! With all of this being said, I did alot of soul searching and also had to come to terms with the fact that even though I had the surgery my journey was not over. With the type of Chiari I have it can come back and it can and most times does require additional surgerys. But we are going to stay positive, keep praying and carry on hoping that does not become a reality. This leads us to today and the reason of my reaching out to all of my family and friends. At the time of my surgery it was already the end of the month, I was discharged on July 4th. The first week was literal hell! But due to recovery, driving restriction and the fact I just had brain surgery, I could not work. Which for us means no ability to pay rent or bills. I am now at a point where things have fallen so far behind that we could loose our home. Finding the means to buy grocerys, pay utilities and just providing for my girls has become almost impossible. I am doing everything I can to find assistance for these things. As most of you kow it is not only a very slow process but it seems almost impossible to get any help if you dont fall in the "guidelines" they require, if they even have any funds available. I know most of us are very familiar with money being tight. I am only asking that if you are able to help in any way it would make a huge difference for us until I can fully return to work. If you are like us and just cannot help currently please share if you would. My family has been so supportive though all of this in every way, but sometimes things happen where we have to reach out to others. This is that time. I just want to thank you all for taking the time to read this and share if you will. Remember to listen to your body, keep up with whatever is going on and dont feel as if its nothing or it will pass! Somethings dont just pass!

Donations ()

  • Korie & Lilly 
    • $50 
    • 31 mos
  • Barbara Cruz 
    • $25 
    • 31 mos
  • Matthew Davis 
    • $140 
    • 31 mos
  • Anonymous 
    • $1,500 
    • 31 mos
  • Pete Moore 
    • $15 
    • 32 mos
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Organizer

Katye Aurentz 
Organizer
Grove City, OH
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