For the last several years, we at Long Island Veterinary Specialists have had the good fortune to work side by side with Dorothy Poppe, a truly remarkable woman. Advancements in the understanding of Chiari malformation and syringomyelia have been made in both veterinary and human medicine because of the alliance between Ms. Poppe and Dominic J. Marino, DVM, Chief of Staff at LIVS. This is Dorothy's story.
Some 20 years ago, Ms Poppe, a former ballet dancer, was raising a family with 3 young children, John, Mary, and George. In 1991, at the age of 4, George began suffering from daily vomiting episodes, periods of breathing difficulty (that turned him a frightening shade of blue), and episodes of pain that were so dramatic that he would bang his head against the floor as his family looked on helplessly. Eventually, he became unable to walk and could only get around by pulling himself across the floor with his hands. From the onset of George's symptoms, he and Dorothy were constantly in the pediatrician's office. Almost daily a new specialist was added to the list of doctors trying to identify the cause of George's symptoms. An orthopedist, an eye, ear, nose, and throat specialist, a pulmonologist, and a gastroenterologist all tried desperately to isolate a cause for this strange syndrome. Ultimately, George was diagnosed with Chiari malformation and syringomyelia. Very little was known at the time about these two conditions, and no cohesive research was being conducted to improve understanding and treatment for these congenital anomalies. Dorothy researched every venue available at the time and collected every piece of printed information that she could get her hands on. Surgery was the only recommendation and prognosis afterwards was bleak. In 1992, having no other option, George underwent surgery twice to attempt to correct the malformation of his skull. George was one of the lucky ones; he is now a handsome, 6'5" 24 year old graduate of Rensselaer Polytechnic Institute currently pursuing a graduate degree in physics. Despite George's success story, Dorothy has made it her life's mission to devote her time and energy to focus attention on these disorders for the thousands of families that have not been so lucky.
Dorothy began her venture as a volunteer with the American Syringomyelia Alliance Project. She spent 17 years there, the last seven serving as the National Director of Development for ASAP. Today, Dorothy is the Executive Director for the Chiari and Syringomyelia Foundation, Inc, based in Staten Island, New York. She has, in the last several years, organized charity events that have funded reasearch for Chiari malformation, including a genetic study initiated by Dr. Thomas Milhorat, Chief of Neurosurgery at North Shore University Hospital. During her quest for understanding of all things Chiari, Dorothy attented a meeting of the American Association of Neurological Surgeons in Philadelphia. It was during one of the lectures at this meeting that she met Dr. Clare Rusbridge, a veterinary neurologist from London. Dr. Rusbridge explained to Dorothy that she had been working with a particular breed of dog, the Cavalier King Charles Spaniel, which appeared to suffer from a syndrome similar to Chiari malformation. Her interest in the disease had been sparked when she accumulated a caseload of "Cavies" that all had similar signs of malaise which included unexplained head or neck pain, weakness, and scratching at the neck or shoulder area.
As fate would have it, Dorothy shortly thereafter encountered a Cavalier at a pet store who appeared to have neurological problems. Armed with her newly acquired knowledge, Dorothy offered to try and get medical treatment for the puppy, to which the storeowner agreed. She called Dr. Milhorat, who offered to make arrangements for an MRI, but he was not a veterinarian and would need a veterinary counterpart to perform the anesthesia necessay for imaging. Cold calling Long Island Veterinary Specialists, Dorothy spoke to Dominic Marino, who offered to perform the MRI. It just so happened that Dr. Marino and his staff of specialists had been compiling their own data on the very same anomaly and had also identified (utilizing MRI) Chiari-like malformation and syringomyelia--most often in Cavalier King Charles Spaniels! This was the beginning of a collaboration between human physicians and veterinarians that is now working towards identifying, treating, and hopefully one day curing the painful syndromes that accompany Chiari maliformation and syringomyelia. Dorothy's little puppy did indeed have a Chiari-like malformation and syringomyelia, and underwent corrective surgery on his skull at LIVS. Today, Quigley, as he is known, still has some residual signs of his diagnosis but leads a happy life with Dorothy and his housemates. Dorothy Poppe continues to work tirelessly and passionately towards advancements in the understanding and treatment for Chiari malformation and syringomyelia. To learn more about Dorothy's work or to hear stories of families living with Chiari malformation and syringomyelia, visit the CSF website at www.CSFinfo.org.