Syringomyelia Awareness: The Human Side of SM / CM Part 1

Re-Posted from Royal Spaniels Fall 2008

My name is Tammi Brown. I am forty-three years old and have been disabled for seven years due to the affects of Arnold Chiari malformation, syringomyelia and related disorders. Since I own a Cavalier who is also afflicted with these conditions, I thought it would be of interest to share the human side of these problems with fellow Cavalier owners. For humans, Chiari malformation and syringomyelia can be quite devastating physically, mentally, emotionally and financially on patients, as well as their families. According to the Chiari & Syringomyelia Foundation, over a quarter of a million families are affected by Chiari and/or Syringomelia, and those are just the ones that are properly diagnosed at this time.

My journey with CM & SM began with some burning pain across the middle of my back when I was eighteen years old. After a visit to an orthopedic surgeon I had no diagnosis, but left his office with a prescription to wear an upper body corset for my first year in college.

Over the next eighteen years I struggled with numerous symptoms: severe neck and shoulder pain, migraines, back pain, fatigue, irritable bowel syndrome, vertigo, right arm pain, fluid in my ears, concentration and memory problems. Studies have shown that the average patient can go five or more years before being properly diagnosed with these conditions. The long list of symptoms and the fact that no two patients present the same is what makes it so difficult to diagnosis. With hope of bringing faster diagnosis to Chiari sufferers, a study of 265 patients describing a unique headache that runs up the back of the head with increased pressure into the back of the eye/eyes which increases in intensity with coughing, sneezing, singing, laughing, posture, etc. was published in the March 2004 Journal of the American Academy of Nurse Practitioners by Dr. Diane Mueller, Neurosurgery Nurse Practitioner and Dr. John Oro, one of the country’s leading neurosurgeons specializing in CM. This one commonality among Chiari patients is what the Nurse Practitioners and General Practitioners need to be most educated on.

Over the years my quest continued randomly visiting a doctor in the new city or state which I lived. I would present my symptoms and each time it was insinuated that I was depressed, stressed or basically… crazy. One study of over 300 CM patients revealed that more than 50% had been told at some time by a doctor that they were suffering from mental or emotional problems.

Beginning when I was twenty-four, I started going to the chiropractor two to three times per week to get adjustments on my back and neck to keep me going through my school and/or work week. I continued this for the next twelve years. Eventually, I gave up on conventional medicine altogether and switched to alternative medicine. I go to my General Practitioner only if I need a referral. I started getting massages when I could afford them, taking supplements, eating the best I could and exercising to the point of what my body could handle, although it always seemed to just fatigue me more.

I continued to push along, following my dreams. In 1996, I began a great career with Walt Disney World. My first three years I worked at Disney’s Fairy Tale Weddings as an Intimate Wedding Coordinator. Then in 1999, I was promoted to the Creative Costuming Department as an Entertainment Costumer Supervisor. I had the job of a lifetime. It was extremely rewarding, but very stressful, and I needed to be on my toes. Well, I was feeling my absolute worst. My symptoms were escalating, but nobody I worked with had a clue. I always looked my best and wore a big smile. When I would get home, I was almost dead.

In October of 2001 it all came to an end. My right arm stopped working completely for a week, my migraines were so bad I couldn’t get out of bed, and I had an episode with my back that took me out of work for a week. My chiropractor finally realized there was something more going on. I BEGGED him to send me for an MRI. FINALLY, someone listened. I had an MRI the next day. The following day, just over eighteen years from my first appointment, I had an answer. I was diagnosed with Chiari and syringomyelia. My poor chiropractor, who had become a good friend of mine after treating me for six years, gave me the news.

Unfortunately, the saga doesn’t end there. I was promptly referred to a neurosurgeon, as I was told I would need brain surgery, more formally known as decompression surgery. From there I sought a second opinion. Over the next four months I saw five other neurosurgeons, not one matching the opinion of the first. I was just beside myself. I realize now I had to go through all of that to meet my angel, Dr. Paolo Bolognese, neurosurgeon at The Chiari Institute. For the five minutes all those other doctors could barely spare this man would give me a lifetime. After sitting with him for two and a half hours in Disney’s Grand Floridian Hotel while he was on vacation (which is a whole other story), I decided he was the one to see. I traveled to Long Island, NY for a series of tests: MRI’s of brain and entire spine; 3D CT brain scan; lumbar puncture/myelogram; test for Multiple Sclerosis and many more. It was confirmed, I was a mess. Dr. Bolognese agreed, I needed to have the decompression surgery. If I didn’t, I would be in a wheelchair within a year. I scheduled the surgery. In May of 2002, I had decompression surgery and they found I barely had any spinal fluid flowing to my brain.

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  1. Thank you so much for sharing your story. Until now I didn't realise this disease was so far-reaching. I have read about how it affects dogs, but I didn't know the disorder affected humans as well. Which is really unfortunate because if I don't know, others must not.

    I am so sorry you have had to go through all this. Hopefully by talking about what has happened to you, you can help others living with the same thing who may think they are alone.

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