I have never been one for this whole blogging concept. I attempted one about 4 years ago when I was living in New York City, and that was pretty much about life as a college student so no real content. The purpose of this blog is to not only help myself but help others that are coping with life as a Chiarian.
Perhaps I should backtrack just a bit. Last year I was diagnosed with having Type 1 Chiari Malformation. This came after years of battling awful headaches, dizziness, frequent spells of nauseaus, numbness in my arms and legs, the list goes on and on. For years I just thought I was crazy and passed it off as drinking too much caffeine and not getting enough sleep. But after collapsing in my kitchen, backing my car into the side of our garage, and falling over in a restaurant my parents and fiance begged me to see a doctor, so I did.
Let the needles start poking...
So after a multidude of blood work, CT scans and MRI's the call came. I will never forget that day, January 20, 2009. "Everything looks normal, but there is a borderline Chiari Malformation showing in your MRI, you should see a Neurologist, click" Yea that was about the extent of the conversation. What the crap is a Chiari Malformation?? I need to see a brain doctor, like McDreamy on Grey's Anatomy?! What is wrong with me????
So we went to see a neurologist, and heed my warning, DO NOT GO TO A NEUROLOGIST when diagnosed with CM1. In fact, do research and find someone that has experience working with this condition. And here is why....
The Neurologist saw me that day, and after about an hour in his office told me I needed sleeping pills and anti-depressants. Sweet, I'm crazy! Forget this Chiari crap. So I went on with planning my wedding and did all I could to focus on the positives in my life. The summer came and things were moving along great, until I woke up one July morning and couldn't move my head. I was experiencing the worst neck pain of my life. I visited my PCP who prescribedme muscle relaxers and pain medication and sent me to PT 3 days a week. The pain didn't go away, it got worse. Again, thinking I was a walking nutjob I pushed through and went along with life.
September came, finally, the day of my wedding!! I had been symptom free for a few weeks and sooo excited to start my new life. I was convinced that everything was stress induced from the planning and life would get back to normal. After a perfect wedding and a perfect honeymoon we came back to reality. September 26th was the Walk for Chiari Awareness, and even though I had doubts of my diagnosis I wanted to participate. It was a cold, rainy Pittsburgh day. I stood in this group of people and was amazed at the positive attitudes and stories I was hearing of people who had been living with this their whole lives. I was convinced at this point I was crazy, there was no way what I had been feeling was as bad as what they had been feeling. I had a mild headache that day, but as it went on, the pain got worse, and spread through my whole body. By the time we got home I couldn't walk up the stairs, my husband had to carry me. It was from that moment on that I was aware that Chiari was real, and it was affecting me. I contacted a girl that was at the walk and she gave me the name of her neurosurgeon, I decided it was time to give him a call. Dr. Beijanni was ready to see me in a few weeks....
My visit to Dr. Beijanni was scary at first, what if he thought I was crazy? What if he told me to get a life? He looked at my MRI scans from the January before and asked me about my symptoms, I told him "You think I am a nutjob, don't' you?" He said, "Nope I think you are a girl that has been suffering from Chiari for her whole life and is ready for answers, you have Chiari, 7mm herniation with a fast progression of your symptoms. The only option is surgery and its up to you if you want to have it. You need to think about the quality of life."
I AM NOT CRAZY!!! Most people would hear something like that and freak out, I heard it and felt like a 200lb brick was lifted off my shoulders. There is something truly wrong with me, and I have a choice. So, after talking things over with my husband, I decided to take the big step to fix my big brain. I go in for my decompression on January 25th. I'm terrified and excited at the same time. I know this is not a cure, but it will help me get through one day without going home and crying myself to sleep. It will give my husband the wife he deserves. It will give me a life back to have energy and not have to fake a smile everyday. It will make me normal.
Bring it on big brain, bring it on!