September Is Chiari Awareness Month – Sarah Shares Her Story

First thing you're probably asking is 'What is Chiari?' That was a question that I had about 6 months ago, when I was diagnosed with Chiari Malformation Type 1. To put it simple, Chiari Malformation Type 1 is a congenital condition where the lower portion of your brain (aka. cerebellar tonsils) hang below the skull opening into the spinal canal. As a result, it can cause severe headaches, difficulty swallowing, visual disturbances & coordination problems.

More times than not, Chiari is misdiagnosed. There are several conditions that cause similar symptoms. I guess, I could say that I've suffered with Chiari since I was a teenager. But it only started to really become a problem in my mid 20's. I started having a headache, which I assumed was a tension headache. Located at the base of my head and neck, it would bother me a couple days a week. Overtime, the headache became more painful and I noticed I had it almost everyday. Then I started having severe nausea. Almost debilitating. I finally went to the doctor where I was diagnosed with Premenstrual Dysphoric Disorder. When you can't figure out what's wrong with a woman, blame it on her period.

I've treated the PMDD for a couple years now, with very little resolution of my symptoms. Aside from the headaches and nausea, I was also dealing with other symptoms that I didn't realize were important enough to mention to my doctor. I mean, you don't have to mention every little eye twitch. Why bore my doctor with that? It wasn't until I was diagnosed with Chiari, that I realized that those 'other' symptoms were my body's way of screaming at me to get the help I needed.

I had started to notice that every time I coughed, laughed, sneezed or yelled my head would throb for a few minutes. A throb similar to the pain of a contraction. I can compare the pain because I've given birth 4 times. It is a pain that brings me to my knees but fortunately only lasts for a few moments. I also started noticing a loss of sensation in my feet and a feeling of bugs crawling all over my body. I've actually treated myself for lice a couple of times because I was convinced I had to have bugs on my head. I was insistent, even though there were no signs of it.

Scared out of my mind to even catch a cold, due to the pressure headaches from coughing, I finally asked my doctor if he knew anything I could do. Concerned about that, he ordered an MRI. It was then I discovered that I had Chiari Malformation Type 1. There are other types, but I'm not going to get into those. I don't have experience with them. Much like when you buy a new car and suddenly you see others driving the same car, the same thing has happened to me since I found out about this. Still not a very popular disease, there are a handful of people in central Maine who battle this.

My journey is only just beginning. I will be having surgery to help relieve the pressure that is on my brain stem from my 'ginormous' brain. Because this is such an uncommon disorder, I out of 10 people who are diagnosed with Chiari are able to find a doctor who understands both the illness and its related conditions. After lots of research, I found the Chiari Neurosurgical Center in New York. I look forward to my future and discovering what life is like without having a headache. I look forward to sharing it all with you. I'm very fortunate to have a supportive husband and family.

The purpose of this is to help get the 'awareness' out about Chiari Malformation Type 1. If you have any of these symptoms, please talk to your doctor about getting an MRI: