By Agnes Starr, RDH, BS
I was in a serious car accident in 1999 my last year of dental hygiene school. I had a lot of back and neck pain over the years but I attributed it to the accident and our job hunching over patients all day. I wore a tense unit frequently, went to physical therapy, saw chiropractors, and different doctors for various symptoms.
The pain, fatigue, and other symptoms were becoming worse and I decided I wanted to further my education to pursue a career in dental or medical sales. I went down to part-time hygiene and completed an accelerated bachelor’s degree program. I remember telling my doctor that I thought I had attention deficit disorder because I would have to read a page three or four times before I could remember what it said. He told me I was just stressed. All my pains, digestive problems, and now memory problems were just stress.
During the pursuit of my bachelor's degree, I got married and shortly after completion of my degree I found out I was pregnant. I started to collapse when I was pregnant and in the middle of my pregnancy was in so much pain I was unable to walk. My husband had to carry me into the hospital. I was put on pain killers and muscle relaxers in the middle of my pregnancy which is usually unheard of. When I bent over to wash my face and brought my head back up I would get terrible pain, like a brain freeze when you eat too much ice cream too fast. I just thought this was all part of pregnancy.
After I delivered my daughter via emergency c-section with an epidural my health rapidly deteriorated. I was exhausted, had terrible joint pain just standing up or trying to walk up the stairs, and one morning woke up and my entire insides were vibrating. I looked around the room for a logical explanation and saw that my daughter’s bouncer was sitting on the floor. I thought it must be vibrating the floor, vibrating the bed, and vibrating me. I went to turn it off and it wasn’t on. I then knew something was seriously wrong.
I remember being in the doctor’s office with my daughter who was then nine months old. The physician assistant looked over my MRI and told me I had Arnold Chiari One Malformation and she wanted me to see a neurosurgeon. My daughter was in her car seat playing with her little yellow and red giraffe toy. I was distracted taking care of my daughter and didn’t give much thought to what I was being told. I had never heard of the condition she just mentioned so I asked her to give me a copy of the MRI report.
I was driving home with my daughter when it hit me. She said “neurosurgeon!” I thought to myself, they do brain surgery, this is no joke. When I got home I went on Web-Md and found out just how serious this was. I just held my baby and later that night laid on the floor next to her crib and cried all night long.
I made the appointment with the neurosurgeon and asked my 83-year-old father to drive me there. I had grown accustomed to doctors just looking at me with a blank stare when I would describe all my symptoms and referring me to another specialist that was unable to help me. So when the neurosurgeon validated my complaints and said he could do brain surgery that may or may not help I was in shock. I immediately started to tear up. One reason being, is a doctor finally believed me and knew that my symptoms were indeed real, the other reason is now I was faced with this decision to have a risky brain and spine decompression surgery that may or may not help me.
They were ready to schedule it like I was getting a manicure. I had tears streaming down my face and the appointment scheduler asked if I would like to think about it. Um, yes, I think so. I walked out of the office into the parking lot with my father and started to gag and dry heave. August 19th 2008, this was my third-year wedding anniversary. Why? What now?
I wanted to find as much information as I could about this condition I had never heard of before my diagnosis. I delve into studies, research, and went for second, third and fourth opinions. This was my brain and I was not going to take a surgery like this lightly. I talked to patients of all the different neurosurgeons I saw and not one of them was symptom free. I traveled to the Cleveland Clinic and flew out to Colorado to see an expert in Chiari.
I found out the Chiari showed up on an MRI in 2003 and my doctors never told me. I was told the epidural created a suction and herniated my brain further. The Chiropractic neck manipulations and pressure from the pregnancy didn’t help. I told the expert how I was struggling with the decision to go ahead with surgery. He told me I would know when I was ready. Whether it be tomorrow, a few weeks, or a few months to call him when I am ready. I have looked at my calendar over and over and have not been able to find a day that looks good for brain surgery.
I came across studies from Duke showing that they found over 100 families with 2 or more members with Chiari. They believe Chiari to be hereditary. Just the thought that my daughter may have to go through this is more than any mother can bear and is the driving force behind me becoming the Buffalo/WNY Site Organizer for the 3rd Annual Conquer Chiari Walk Across America for 2010. Last years walk was held in 31 cities across the country and raised over $250,000 for research. The closest site to us last year was 3 hours away in Syracuse. We need to raise awareness to this condition that affects over 300,000 people in the US and we need research into a permanent cure.
The Buffalo/WNY Walk will be held Sept. 18th in Ellicott Creek Park, Tonawanda, NY. Registration begins at noon. The walk begins at 1 pm. You can learn more about what research these walks have funded, find a walk in your area, register to walk or sponsor a walker online at www.conquerchiari.org.
I had to stop working as a hygienist due to my symptoms in 2008. I miss helping others and educating patients but feel blessed to be home with my daughter and see all her firsts. Although some days the pain consumes my every move I take things one day at a time and am so very grateful for each and every day I have on this earth.
By Agnes Starr, RDH, BS