My Chiari Story - Part One

Today, I want to begin to share my Chiari story with you. This is Part One. I am splitting it up because if I put it into one post, it would take a while to read and "Ain't nobody got time for dat!".  :)

To begin, I feel like I should give you a bit of history about me. I am married to Dan, the love of my life. He works as a full time Firefighter/Paramedic.

This is us at our wedding in June, 2000. We were so young and in love!! Still are (in love that is)!

We have three amazing, beautiful children together.

Here they are this past Christmas. I love them to the moon and back!

I worked part-time as a registered nurse in a post-op surgery unit at a local hospital. 

Then, life as I knew it changed…in an instant. Here is my story!

August 12, 2012 started as any normal Sunday would. We went to church, then came home for lunch before heading out to the mall to Build-A-Bear to surprise our youngest daughter with a bear making adventure for her birthday, which was the next day.  We were driving down a narrow country road that we routinely travel when I felt our car abruptly slow and looked up to see another car careening side ways down the road toward the front of our van. I will never forget the horror of that moment as I watched the car hit us, felt the hard jolt of impact, heard the crunch of metal and breaking of glass and the fear of if my children and Danny were hurt. Only a few seconds later, I realized that everyone but me was okay and little did I know how badly injured I was and that I would never be the same again.

I sustained a whiplash neck injury and shoulder sprain in the crash. About 2 weeks after the accident, I began to notice that I had a very odd pressure in the back of my head near the base of my skull. My doctor felt that it was due to the neck injury, so I brushed it off. As the days and weeks went on, the pressure worsened and I began having headaches in that same area. I had dealt with headaches before but never in the back of my head. Finally, toward the end of September, my doctor sent me for a Cervical Spine MRI to look for any possible disc problems or other issues from the neck injury. The report came back with no major findings of spine issues except for a couple small bulging areas on two discs. It also read, "cerebellar tonsillar ectopia of 4 mm noted". By this time, it had been nearly 2 weeks since my MRI and my headaches were becoming more frequent and were worsening with pain radiating behind my eyes. I was also having dizziness and tingling down my right arm to my fingers. My primary care doctor said, "I don't think the findings on the MRI is anything to worry about, but since you are having worsening headaches, lets do an MRI of the Brain to take a closer look."

Being a nurse and also having never heard of "cerebellar tonsillar ectopia", I began to do research on the internet. I found that this condition is when part of the back portion of the brain, the cerebellar tonsils, herniate through the hole at the base of the skull where the spinal cord comes through from the brainstem. This places pressure on the brainstem and cranial nerves, and blocks the normal flow of cerebrospinal fluid around the brain. This condition is also called "Chiari Malformation". I realized that many of the symptoms I was having could be related to having this condition. I just had to wait and see what the brain MRI said.

So, I endured yet another MRI. I hate them…with a passion!! I am terribly claustrophobic and having a neck or brain MRI done is particularly torturous because your head is placed in a cage type contraption which prevents you from moving. With the neck and head pain, this was very painful for me! The whole process was indeed a nightmare!!

My doctor called me a few days later with results that confirmed a Chiari Malformation of 5 mm. He said, "I think this is a benign type of condition and I doubt it is causing your symptoms, but you need to see a neurologist to find out for sure."

My symptoms had only continued to worsen by this point.  I was having daily headaches and 1-2 severe headaches a week, which were becoming difficult to manage with over the counter medications. I was nauseated, very dizzy and losing my balance frequently. I literally felt that something was very wrong in my body, and it was rapidly getting worse. Through all of my research, I felt that the possibility was strong that Chiari was causing my symptoms, and the worst part was that everything I read said these frightening words, "There is no cure for this condition."

Come back tomorrow to read Part Two of my story!