A Chiari Story

A Chiari Story

Welcome to www.chiariwise.com! I am glad that you have taken the time to visit my website and I look forward to this opportunity to share information and awareness about Chiari Malformation.
Disclaimer: This publication is intended for informational purposes only and may or may not apply to you. I am not a doctor and I am not engaged in providing medical advice. Always consult a qualified professional for medical care. This publication does not endorse any doctors, procedures, or products.

About the Author

My name is Angie Ewing and I was diagnosed with Chiari Malformation Nov. 22, 2005. That date has become as significant to me as my own birthday. It may seem strange to some, however I have endured the struggles of being undiagnosed/misdiagnosed and suffering needlessly since 1999. I would describe that Tuesday in November as one of the most spiritual days of my life.

The Phone Call

I remember vividly getting the phone call from my doctor. I can tell you that for a brief moment, I felt the earth stop moving and time seemed to be suspended as I jotted down on a piece of paper the report information my doctor was relaying to me. The notes I nervously scribbled out contained the phrases “three cyst on my brain” --“small hippocampal cyst, less than 2mm”—“no seizure activity” – “cyst in the inferior basal ganglia on the right” – “partially empty sella” – cyst- left orbital cone from the inferior rectus”— “obvious Chiari I Malformation”.

My Journey

I sat there in awe of hearing my diagnosis. As mentioned, I had begun to have symptoms in 1999. It started with severe headaches and dizzy spells after the birth of my second son. I was initially told that I was just under too much stress with my full-time job as a police dispatcher and mother of two small boys. I was sent to physical therapy to relieve the pain of the headaches and tension. When that treatment failed to alleviate the pain, I had a Tilt-Table Test.

I don’t know if there’s a record breaking time for a Tilt-Table Test or not, but my doctor thought I might have exceeded the record that day because approximately 7 minutes into the testing, my dizzy spell started. The conclusion was a positive tilt table test for “Vasodepressor Syncope”. This is also referred to as Neurocardiogenic Syncope (NCS) or “Vasovagal Syncope”. The relief of that diagnosis seemed short lived and somewhat incomplete to me as the symptoms I was experiencing grew in numbers and even worsened at times.

Courtesy of the World Wide Web, I searched endlessly to find out all I could about NCS. I encountered a website that listed more details about the symptoms I had been experiencing and I noted that the diagnosis was Arnold Chiari Malformation I (ACMI). I went to see my neurologist and I asked him if it was possible that I had ACM as I felt I fit all of the criteria. In 2000, my neurologist told me that I could not have ACM as it was so rare and that hardly anyone was ever diagnosed with this malformation. During the next five years, my health and emotional well being would begin to decline.

I had numerous medical tests completed for various ailments in the six year time span and gradually, I was being treated symptomatically. The daily headaches were becoming more difficult to manage and the dizzy spells were more frequent and intense. Still, I found the strength to continue working full time and I tried to be a good wife and mom. Often I would force myself through the day just so I could go home from work and collapse from the head pains. In 2001, I reached the end of myself, which we all have to do sometimes if we’re honest. I found myself losing interest in everything that I once enjoyed, I rarely felt good despite a dramatic weight loss and every day was a battle to endure physically, mentally and emotionally. My husband says I should be an actress, because no one really knows how desperate and fragile my life had truly become. That’s when major depression was added to my list of diagnosis.

Finding God in the MRI Machine

My very first MRI was on Nov. 15, 2005. During my Morning Prayer time before the test, I surrendered all of my medical concerns to God’s trust and care. My MRI was to be completed with and without contrast, so I had a bit of a stay in the MRI machine. As not to become Closter phobic, I practiced some gentle deep breathing exercises (careful not to move) and I talked to God more about what I had lifted up to Him earlier that morning.

My life scripture is Jeremiah 29:11-14

"For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call upon me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart. I will be found by you," declares the LORD “and bring you back from captivity”

I was laying there with my head securely strapped into an apparatus to limit movement. There was a steady hum and occasional buzzing as the MRI Machine whirled around my head taking detailed photos of my brain and cerebral area. I found myself talking to God as I frequently do and revisiting portions of my life. I saw myself as a little girl riding my red tricycle up and down the sidewalk in front of our house, I was wearing a green outfit and there was a flag attached to my tricycle. I replayed moments in my life when I met my husband and the birth of both my boys. Each “clip” I viewed played on in my head like an old home movie and I could plainly see God’s presence in each one.

Without hesitation, God reassured me that He’s been with me throughout my life and that He would not leave my side through this process. In an unadorned manner, God spoke and said, “You will have the answers that you need.” I continued to lie still listening to the MRI Machine rattle on, doing it’s work, knowing with peace and confidence that I would have the answers. When the test finished, I will admit that I was a bit saddened that it was over because how often does one get to find God in an MRI Machine??

It IS in My HEAD!

One week after my MRI, God honored His promise to me by my receiving the phone call stating that I indeed have a Chiari Malformation. CHIARI, this one simple word that represents so much has renewed me emotionally, physically and spiritually and I felt a true sense of rebirth on November 22, 2005.

Some who've been diagnosed or had to come to terms with their children being diagnosed with CM have found themselves scared and devastated by this verdict. Yet, there are many others like myself who've found the diagnosis to bring a sense of validation, confirmation, relief and peace.

For me it was the validation that the past six years of the endless headaches, constant dizzy spells and painful suffering had a legitimate medical explanation and I was not going crazy. It was the confirmation that I was not a hypochondriac and that I was not manifesting headaches to get out of doing something. The truth is that I missed out on a lot of activities that my mind and heart longed to participate in, however my physical limitation would not permit me to do so.

The relief of finally knowing the answer to the question I had called out to God so many times before, “WHAT’S WRONG WITH ME?” It’s the relief of having options to alleviate the symptoms and the availability of choices. The relief and freedom of simply just knowing brought peace. It was the kind peace that surpasses all understanding. This sense of peace expounds my limited thinking thus strengthened my relationship with God in ways I only dreamed possible. Life is good!

Primarily people with Chiari are long time suffers and it is common to hear stories of those who have endured this “mysterious malady” for YEARS!

Yes, my life did change after my diagnosis of CM and I will never be the “old Angie” that people remember me to be. While I still maintain many qualities and traits that comprise my personality, there has been a significant shift in my sense of being, my priorities and what I choose to value as important to me and my family.

I would like to thank you for joining me on my Chiari journey. I believe that education is one of the most important facets of life and that is one of the reasons behind the creation of this website. There is a definite need for Chiari awareness, research and education in the medical community and also in the local areas where we live and reside each day. It is estimated that 1 in every 1000 people have Chiari Malformation. Let us chose to become

“CHIARI WISE” and share the information to help others around the world.

Respectfully,

Angie Ewing

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