At the Age of Thirteen
by Jessica Fallon Guyton
At the age of thirteen, I began to experience difficulty walking, numbness and decreased sensation in my hands, and the headaches Id had for several years were worsening. I started to feel lightheaded when standing and had back pain. Within two months of these symptoms, I was diagnosed with syringomyelia and a Chiari malformation. Because the cervical syrinx reached almost from one side to the other in my spinal cord, I was scheduled for surgery within two days of meeting with the surgeon.
We were suddenly thrown into the unknown. While it was nice to know I wasnt going crazy and that there was something wrong, we really didnt understand the depth of this diagnosis. Since that time six and a half years ago, I have visited the operating room eight times. In the beginning, we worked to control the symptoms of arrhythmia, headaches, tingling hands, hearing issues, and low blood pressure. After eight surgeries and multiple medications they were somewhat under control. However, I was involved in an accident in January 2002 that increased my pain levels significantly. This has brought me to where I am today. I am currently scheduled for a crainioplasty, my ninth surgery, on May 5, 2003.
I have always tried to remain optimistic with the belief that everything happens for a reason and that when one door is closed another is opened. At times, it seems that more doors have been closed than opened, but I try to keep a positive outlook and look for the good in the bad.
My sister, who has always been known as the energetic one, began to show symptoms of syringomyelia in 2002. She, too, had been involved in the same accident I was in and we believe this is what made her symptomatic. She had an MRI in August of 2002 that diagnosed syringomyelia and Chiari. She had a decompression done in October 2002, and then a shunt placed for hydrocephalus and high ICP in February 2003. It is difficult to believe that both of us are affected by this and even more difficult to understand how it has changed our lives.
I have always been interested in medicine, but after eight surgeries and several hospital stays, I decided I had been in one too many hospitals to ever consider a career in medicine. I ended up exploring several other options in school, only to learn very quickly that my true interest lies in medicine; specifically Neurology. That is where my heart is and I feel that I have much to offer in that field. I realize that knowledge about syringomyelia and Chiari is not nearly as widespread in the medical community as it should be. Tragically, people go undiagnosed or misdiagnosed many times. There are others who are diagnosed but not treated effectively. I think my personal experience with these illnesses gives me the desire and drive to make an effort to change this.
As a sophomore at the Honors College of Charleston, I feel that my academic achievements have not been affected. Even missing close to half of high school, I worked hard and graduated 12th in my class of 350 and attend college, almost on a full academic scholarship. Although my diagnosis has taken away several of my passions, such as playing the French horn, my education is one thing that I will always have. This is why I strive so hard to succeed at it; it is the one thing that I know can not be taken away. I recently declared my major in Biology so that I can complete the pre-med curriculum. I will also be shadowing a neurosurgeon or neurologist for my Honors tutorial next semester. Coincidentally, I will be shadowing at the same hospital where my sister and I had our surgeries.
I know how fortunate I am to have been diagnosed just two months after the symptoms began. Of course given my history, the very first test my sister had was an MRI, so her diagnosis came even quicker. My sister and I are also very lucky to have a mother who acts as our advocate; she has continuously researched and done many other things on our behalf. Not every one is fortunate enough to have someone so steadfast to fall back on for support.
For each of us, this diagnosis has brought many of our interests to a close. I was once a musician and a performing chorus singer. Ashli was extremely athletic and was a cheerleader, dancer and competitive gymnast. Fortunately, I have found that I can concentrate on doing my best in school and that neither syringomyelia nor Chiari can rob me of that. However, Ashli is still searching for new avenues, as she suffers from cognitive and auditory processing issues due to the high pressure and hydrocephalus, which cause problems with her schoolwork.
My mom and dad have always taught us to be the best we can be at whatever we chose to do. They never limited our opportunity to choose what we wanted to do, but did expect us to give one hundred percent in our activities. Because of syringomyelia and Chiari, our choices are limited. It has changed who we are and who we had hoped to be. However, I would like to think it has changed us for the better. I have learned many valuable lessons that most people may never have the opportunity to learn. I dont take things for granted, I appreciate what I am able to do, I have learned a deep sense of compassion, and above all, I have learned to overcome obstacles. I have learned to live by the quote, Dont cry because its over; smile because it happened. Although certain chapters of my life are over, I am able to look back on them with fond memories. Now I choose to focus on the future, as I know many of these lessons I have learned will help me there as well, especially in my career as a doctor.
Update by mom, Billie Jo:
Fallon is doing quite well from the surgery and the headaches have been on the decrease. She did not even have to go to ICU and was only in the hospital for 2 daysa record breaker. She cant tell yet if it helped with the other muscle pain. The idea was to insert the plate between the muscle and dura so that the scar tissue/muscle would not stick to the dura. The surgeon feels that the sticking was causing some/most of her pain.
Some of Ashlis memory is in the impaired areas. Basically, she has to learn information 4 different ways in hopes to remember it. Right now, the neuropsychologist is saying 12 to18 months of practice should improve the visual spacial/auditory and cognitive delays. If not, then she will definitely require accommodations at the college level. She will receive some next school year, her Sr. year, but not as much as she will need IF she begins college with the same issues.
Also, Fallon will be shadowing her neurosurgeon at MUSC. She has OSHA training, and orientation to go thru. This is such an exception to what is normally allowed. She will work with him for 3 hours per week for an entire semester.
She did manage to make the Deans list this year at college. To achieve that she had to make at least a 3.7 both semesters and she did it! She was proud of herself.
My greatest wish is that her pain levels will decrease. My husband and I are still at times, speechless, that this disorder has affected both of them so differently...
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