Okay, so where do I begin? I am a Chiari type I patient, diagnosed in May 2004. I have suffered with headaches/ migraines for about 12-15 years (long time huh?).

I started getting this unbearable ringing in my ears that lasted a little over 6 months. After seeing a number of specialists and being told that I needed surgery in my ear to drain out fluid (which never happened), I was sent for my first MRI of the brain.

The MRI was taken on May 4 2004, 2 days later my primary care physician (PCP) called me at work to discuss the findings. He was gentle as he started to explain that they found chronic sinus problems and then tried to explain the bigger problem. He said something like:
“Well Maritza, the thing is that you’re so smart that your brain doesn’t fit in your skull”
I actually laughed when he said it, but he wasn’t laughing and I realized he wasn’t kidding. He went on to explain Chiari Malformation and admitted that he’d never really heard of it until my MRI results. Everything after that was kind of a blur. My husband showed up at my job and we talked. All I could think was “I’m only 28 years old. I’m a mother of a 2 year old daughter, and I don’t want to die!”

Last checked my Chiari descends about 5mm. I have many symptoms- always alternating- they seem to switch up a lot. My migraines are still here- they can last anywhere from 1 day to 3 weeks easily (I’m serious). I’m so used to them now that sometimes I don’t realize that I have it. You see the headache never really goes away- it just mellows out, like on a scale from 1-10, an everyday mild headaches is a 2 or a 3. On a bad day that headache is a 15- making it impossible for me to think, or move. I just lay down with ice on my neck and let the tears flow. I try not to actually cry- the intensity of the crying makes the pain worst.

Other symptoms include: chronic fatigue, numbness/ tingling in my head, neck and shoulders (that is getting worst too), joint pain, balance problems (I can’t walk more than 2-3 steps, one foot in front of the other, without loosing my balance. Hoarseness, speech problems (this one is recent- I stutter more, I loose track of what I was saying- it’s like I know what I want to say, but it won’t reach my tongue), mood swings, nausea- the list goes on.

So now I’m 33 years old and have been dealing with the realization of Chiari for 5 years. Where do I go from here? Each day is a battle and struggle to get up and out of bed. Each day I try to be strong and put my faith in God- for he is the one who can truly heal me. I look at my two beautiful children and can only hope that I have not passed this dreadful illness to either of them. Their faces, their smiles are what get me through each day of pain. Knowing that I only need to provide for them make me push myself harder. I am thankful for each day, person and lesson that has come into my life. I am thankful that my husband is understanding and compassionate and helps so much with my every need.

To the Chiarians of the world- the struggle is hard, long and ultimately painful, but it is for good reason that we have this and help others to understand. We will be the teachers of many and the source of good research so that in the future there will be a breakthrough to help other Chiarians through their pain.

Maritza Hernandez