I finally convinced my neurologist to order an MRI of my brain and when I met with him regarding the results, he told me everything looked fine. He handed me the report and told me to look at it for myself. The report said everything was fine except for a little foot note at the bottom indicating an Arnold Chiari Malformation I. I asked my doctor what that meant and he told me it was nothing. I asked him if it could be the cause of my problems and he said, "No." He said it was very rare and that most people, who have Chiari, don't even know they have it. Then he said, "Some people have a very severe case and need brain surgery. You don't want brain surgery do you?"

I thought my doctor was a jerk and I thank God that I didn't trust him. I went home and immediately looked up Chiari on the computer. What I read was scary, but sure enough, all of the symptoms I was experiencing were listed as symptoms of Chiari. I researched as much as I could on the computer and decided to see a specialist in NY.

My trip to The Chiari Institute included 2hrs. in the MRI machine for brain and spine images, a CAT scan, x-rays, blood work, a 24hr. halter monitor to check my heart, breathing tests and a sleep study. Then I sat with the neurologist and neurosurgeon for 4 hours. They confirmed the Arnold Chiari Malformation I and added two accompanying diagnoses: Tethered Spinal Cord (The spinal cord is tethered at the bottom instead of free floating. It puts tension on the spinal cord and causes a suction that pulls the brain down through the spinal column.) and Retroflexed Odontoid Process (The first vertebrae of your spine points the wrong way and pushes into your brain stem.)

The doctors explained that the car accident did not cause my chiari, but it did make it worse. Chiari can be caused by trauma, but the presence of my accompanying diagnoses indicates that it was present at birth. Chiari is usually passed down through your mother. However, no one else in my family has Chiari. Chiari and some other neural-tube defects have been linked to Agent Orange exposure in Vietnam. This is my favorite theory because my father was exposed to Agent Orange in Vietnam. I don't know if they will ever figure out why I am so lucky, but it doesn't really matter at this point.

The doctors explained the possible progression of Chiari, the implications and the possibility of surgery. I am not a candidate for surgery at this time because I still have a decent quality of life and I can manage my symptoms. However, my doctors recommended life altering limitations to help keep me healthy and out of surgery for the longest possible time. I.e.: no lifting over 20lbs, no tilting my head back, no activities that could result in a head injury, and no over exertion. I don't always follow the rules, but I try.

This plan has been working for me. My symptoms are progressing, but at a slow rate. I just need a little help and patience.

Chiari is difficult to track and manage because it affects so many parts of your body. The problem begins at your brain, brain stem, and spinal cord, but these things control every function of your body. I have had two surgeries and other health problems since the onset of my symptoms that may have been caused chiari. I just tackle new problems as they arise and keep moving forward.

Chiari is also very difficult to explain. It is college level, anatomy and physiology hard. Plus, when you look fine on the outside, but try to explain why you need help loading your own groceries in your car, peoples' eyes glaze over and they don't really want to hear it. It's easier to keep it to yourself, but not necessarily the right thing to do for the cause. Melanie's hard work and dedication have inspired me to be a little braver and I hope it inspires other people too.

If you have any questions you want to ask me about my experience with Chiari, I would be happy to answer. Feel free to email me at the email address provided.

In good health,
Wende

(if you would like to contact Wende, please email contact us at masons.mission@gmail.com for her email address)

Comments