My Battle With Chiari
In October of 2008, while undergoing a routine annual physical at the firehouse. While blowing into a spirometer, to test my lung function, I became dizzy and passed out. Once I awoke, I was taken to the hospital. After weeks of testing, I was diagnosed with what is known as Chiari Malformation. It is a rare congenital neurological condition. I have to acknowledge that I was very fortunate that it only took a few weeks. I have read numerous stories of others who have spent years trying to find answers. However, the diagnosis was just the beginning.
For those of you that don’t know what a Chiari Malformation is, I’ve included the description taken directly from the Mayfield Clinic website:
Chiari malformations are structural defects in the base of the skull and cerebellum, the part of the brain that controls balance. Normally the cerebellum and parts of the brain stem sit above an opening in the skull that allows the spinal cord to pass through it (called the foramen magnum). When part of the cerebellum extends below the foramen magnum and into the upper spinal canal, it is called a Chiari malformation (CM).
Chiari malformations may develop when part of the skull is smaller than normal or misshapen, which forces the cerebellum to be pushed down into the foramen magnum and spinal canal. This causes pressure on the cerebellum and brain stem that may affect functions controlled by these areas and block the flow of cerebrospinal fluid (CSF)—the clear liquid that surrounds and cushions the brain and spinal cord. The CSF also circulates nutrients and chemicals filtered from the blood and removes waste products from the brain.
Initially I was simply sent to a local neurological group in Indianapolis for a consultation. During the consultation I did not feel comfortable with the surgeon. I felt he was aloof and arrogant. He appeared bothered by my questions. At the end, I asked my wife if there was any questions I had forgotten to ask. He cut her off and said, “I think you know everything you need to know. I will have my staff book your surgery.” He excused himself and left the room. I made the decision to look elsewhere.
I discovered that there was a Chiari expert just 100 miles from Indianapolis, in Cincinnati. I made an appointment to see him.
When Dr. John Tew walked into the exam room, he threw my chart on the table, as if to discard it completely. He smiled, introduced himself, and pulled a chair next to me. His demeanor was relaxed and comforting. During the course of the conversation he asked me to explain to him what symptoms I had been feeling. He asked me how I felt about corrective surgery. He wanted to know what I was going through. He gave me a feeling that he was genuinely concerned.
Soon, he invited me across the hall. As we entered the room he had pictures from my MRI on the screen. He explained everything in great detail as he pointed to the larger than life images on the screen. He made sure I completely understood everything there was to know. In the end, he eventually told me that he thought I was a good candidate for corrective surgery but wanted me to take the time to think about my options. I had already done so and decided right then and there to have him perform the surgery.
In January of 2009, I underwent a post fossa craniectomy, or “decompression surgery”, at the University of Cincinnati.
Immediately before the surgery, as I was saying goodbye to my family and to my wife, Michele. I realized that the overhead lights in the OR could potentially be the last thing I ever see. I made a promise to myself that afterward, I would make dramatic changes to my lifestyle in order to ensure I live as long as physically possible.
The surgery was a success, though, as I’m sure you can imagine, the recovery was brutal. I will spare you the details. But I can tell you that any type of head trauma will cause vomiting and I do not tolerate pain pills very well and quit taking them the next day!
Within ten days after surgery, I began to exercise. Within 30 days after surgery I went back on duty at the firehouse. A year later, I had lost over 50 lbs
Though the surgery was a success, it isn’t a cure. Surgery for Chiari Malformation is only meant to relieve symptoms. The extent varies greatly from patient to patient. Sadly, some experience more even more symptoms after surgery. Some of the symptoms Chiari patients may experience are:
- neck pain
- hearing or balance problems
- muscle weakness or numbness
- difficulty swallowing or speaking
- ringing or buzzing in the ears (tinnitus)
- curvature of the spine (scoliosis)
- problems with hand coordination and fine motor skills.
10 years later, I am fit and healthy. I still experience symptoms but I refuse to let Chiari define me. I work beyond those limitations. Some of the activities I’ve done since my surgery include:
- Surfing (for the first time on my 40th birthday)
- Jiu Jitsu
- Tai Chi
- Compete in triathlons
- Compete in Spartan Races (obstacle course races)
- Became a personal trainer and a Beachbody Coach
This is only the beginning! I challenge myself everyday, month and year to push my boundaries and enjoy life. I work with Chiari patients to help them cope and understand what it is they are dealing with. I work with people to help them adopt a healthy lifestyle. I offer online fitness and nutrition consulting, life coaching, and counseling. For a free consultation please contact me.
If you’d like to know more about Chiari Malformation please visit the following links:
Mayfield Clinic (Cincinnati, OH)
Chiari & Syringomyelia Foundation