In the last month and a half, I have been contacting Airey Financial Group (Merrillvile) representatives and speaking with Cyndi Vanek about her personal journey with Chiari. The 21 of September will bring us all together at Wicker Park in Highland for the Conquer Chiari Walk Across America—I really cannot wait to meet these wonderful individuals in person as well as other warriors.
Since I was diagnosed in 2011 with a Chiari I Malformation, I thought I wouldn’t meet anyone else that was fighting the same battle as me, since Chiari is not all that well-known by many health professionals or is quickly diagnosed.
My contact with Cyndi, and a few others, means so much to me because I no longer feel alone in my journey with a life-altering condition.
I talked with Cyndi earlier this week and she agreed to answer a few of my questions about her experience with Chiari to share with all of you today.
Can you tell me about when you were first diagnosed?
When I was first diagnosed in 1997, no one knew what Chiari was. At the time, I was working as a registered nurse and I had no clue about it. When I was growing up, I didn’t have any symptoms except having hoarseness to my voice and low blood pressure. Other than that, I didn’t have any significant health problems.
Before the identification of Chiari, I was suffering from migraines, numbness, memory issues, and vertigo. A few doctors told me that I was suffering from Multiple Sclerosis (MS) because a lot of the symptoms of Chiari mimic MS. There were other diagnosed assumptions, but I knew something else was wrong.
The Chicago Institute of Neurosurgery proved my hunch to be right. The doctor whom I spoke to called for an MRI and that is how I found out I had been living with Chiari.
How has Chiari affected your life and how do you cope with the complications of it?
Before my condition was recognized, I worked full-time and led a very productive life. After I started having horrible symptoms, my life slowed to a stand-still—at least that is how I felt. Currently, I am not working due to continuing symptoms and the medications I have to be on.
Eventually, I found a way to turn the negative aspects of living with Chiari into positive ones. In 2008, I started a support group along with another fighter to give hope to others. I always try to stay active in my community despite my constant headaches and need for multiple surgeries.
Can you tell me about your involvement in the Conquer Chiari: Walk Across America? What does it mean to you?
I was the first coordinator to register the walk site for the Conquer Chiari: Walk Across America here in Highland; we needed better awareness in Northwest Indiana for many wonderful reasons. (To see more information on Conquer Chiari please visit http://www.conquerchiari.org/index.html)
If everyone does a little bit to spread awareness, then a lot of people wouldn’t feel alone. They would find out that it affects other individuals.
What else have you done to further Chiari awareness?
The doctors who I saw prior to my surgery would use me as a valuable resource to others that were diagnosed with Chiari. They would ask me to explain the diagnosis to their patients because they really didn’t know firsthand how Chiari affected the lives of those under their care. My experience with Chiari was important to so many people because they knew they were not alone with the mysterious diagnosis.
What do you think about decompression surgeries (common term for any of several variations of a surgical procedure to alleviate a Chiari malformation) and their outcomes?
Sometimes, for some people who have that first surgery, it opens Pandora’s box—for others, it fixes some or all their symptoms. For me, it made some things better, but it created other complications that I still struggle with like migraines, balance issues, and vision issues.
They change my daily living and my quality of life; however, the silver lining is that even though I’m not working anymore, it gives me the ability to stay home with my children and my husband. I’m there for them and that is so important for me.
Although Chiari has been tough on my life, it certainly had positive effects as well. You find out who is really there for you and you notice that there are a lot of beautiful people in the world.
What is your view on Chiari and other chronic illnesses?
I think that a lot of people with Chiari are procrastinators and the reasoning behind that is that they are so wary about their condition. When your body isn’t working very well, you don’t leave the house, you don’t go to events, you find a reason not to go and isolate yourself. A lot of people procrastinate things because they say to themselves, “Tomorrow will be better; tomorrow will be better.”
People have come to understand that MS is an ebb and flow of symptoms, but no one really gets the whole Chiari thing. When they see you, you look normal but what they don’t realize is that other days you can be stuck in bed, unable to walk around by yourself.
Why is community involvement and awareness important to you?
When you go through all the work of putting an event together and look back at the day and those who attended, you cry because you realize that everything wouldn’t have happened if you didn’t step up. You can either be the one who makes a difference or keep things as they are.
I wanted to show my kids that instead of accepting whatever is given to you, you can make a difference. I don’t know what I would’ve done without my family supporting me through all the surgeries, illnesses, problems, and difficulties—let alone, this walk. They inspired me to keep going.
I hope to meet many new Chiari survivors on September 21 and share their inspiring stories as well! I thank Cyndi for taking time out of her day to speak with me and I hope to grow alongside her in our fight with Chiari.
For more information on Chiari and the Conquer Chiari: Walk Across America happening in Highland please see my other article at http://www.nwindianalife.com/voices/32395-eubanks-save-the-date-walk-across-america-on-sept-21.