Stephanie’s Story of Chiari Survival
My name is Stephanie Barzellone. I am the daughter of Texas State Representative Jerry Madden. I am a wife, mother of four children, and I am also a Chiarian. My journey with Chiari malformation started on June 2, 2008, when I was injured in a work accident. The saga includes multiple visits and repeated examinations by a variety of physicians over a two year period.
- Three general practitioners with exams and X-Rays
- Three orthopedic surgeons with exams, X-Ray’s and MRI’s
- Two neurosurgeons with exams, X-Rays and MRI’s
- Received brain decompression surgery for Type 1 Chiari malformation exactly 2 years and 5 days from the start of this frustrating and painful ordeal
The initial examination and X-Rays were taken at the Family Medical Center, revealing no fractures. I was given a neck brace and ibuprofen, and released. Still suffering with severe neck and head pain, the next day I went to two of my personal doctors. One prescribed an anti- inflammatory and the other recommended an MRI. Due to the fact I was injured at work, Workers’ Compensation took over and sent me to two of their orthopedic surgeons. Thirteen days after the accident I saw the two specialists. One doctor recommended physical therapy and an MRI. The second doctor took over treatment and, two months after the accident, finally ordered the MRI. Chiari malformation was not a part of the diagnosis.
Because of ongoing headaches, nausea, vomiting, and numbness in my right arm, I asked to see a neurosurgeon. Instead, I was sent to a third orthopedic surgeon, who on October 7, 2008, re-read the MRI and found the Chiari malformation. Due to Workers’ Compensation, it took a while to get additional treatment. I did not receive the second MRI and EMG testing until May 2009. Based on the results, it was recommended that I see a neurosurgeon for a CSF flow study.
On October 7, 2009, I was allowed to consult a neurosurgeon. He ordered the 3TESLA MRI with flow study and new X-rays. On November 18, 2009, the flow study results were evaluated and decompression surgery was prescribed. Insurance required a second opinion, but I didn’t see the second neurosurgeon until April 2010. He confirmed the diagnosis and recommendation for immediate surgery. On June 7, 2010, I received brain decompression surgery for Chiari malformation Type 1.
Today is December 15, 2011. I am one year, six months, and eight days from my surgery. I have spent the last year and a half in recovery. It has been the toughest battle of my life but I am here and I am alive. Looking back on this journey, I can only dream of what might have been with early detection. There are so many lessons to be learned from my story and changes that should be made in the system. My goal is to improve Chiari malformation awareness and education to better facilitate early diagnosis for the thousands of people affected by this disease. One day, with your help, we will conquer Chiari.