I had a chordoma removed from my cervical spine near the levels C-5 to C-7 on December 22, 1969. I was 14 years old. I was one of the lucky ones to put this in the rear view mirror, although there have been some bumps in the road of life along the way. I decided to put some thoughts together to raise awareness of this disease.
I experienced some neck discomfort after a baseball scuffle when I was 14 in the spring of 1969, and after a few other sports injuries and persistent pain, my neck was getting worse and my mom decided it was time to take me to the doctor.
I had a physical with a family practitioner, and he prescribed some muscle relaxants and told my mom if there was no improvement he would refer me to a “bone specialist.” After ten days or so with no improvement my mom called and he gave us a referral to Dr. Barnaby, an orthopedic surgeon in Albany (the first of several referrals). He examined me, took some x-rays of my neck (the first of many) and did a full exam of my cranial nerves.
After some behind the scene phone calls, I was told by my parents I had to go to St. Peter’s hospital for some tests. There was some bone destruction of my spine seen on the x-rays. Dr. Arthur Schilp did a neurological examination to check all my cranial nerves. He was right to the point and told me I had a tumor on my spine in the area of C-3 to C-5 and that I needed surgery to remove it, and he scheduled me the following Monday morning, December 22.
When I woke up from the surgery I was in the intensive care unit. The first few days were difficult. I remember getting up to use the bathroom the first night and I blacked out and fell down. I was wearing a plastic collar with a foam outline to keep my neck stable. It made it difficult to speak and swallow.
After several more days in the hospital Dr. Schilp came in to examine my wound and took a culture of it. I developed an infection and was anemic so he told me I would be on antibiotics and iron for the anemia. I was in the hospital for three weeks after the surgery and I lost at least 20 poundss. It was nice to get home, and after a few days I remember my mom getting a call from Dr. Schilp and he told her I would need radiation treatments to kill the remaining tumor cells so there would be no recurrence. They recommended the Sloan Kettering Cancer Hospital in New York City for this.
My dad, my uncle Pete and I drove down to New York City. I had more x-rays and had a mold made of my face for a mask to be worn during radiation treatments. The plan was to have 30 radiation treatments of 200 roentgens each day. I had to lay face down on the table with my face in the mask. The x-ray machine rotated around the table and only took minutes. There was no discomfort during the treatments.
After four weeks of radiation I became very weak and developed a sore throat like I never had before. My doctors thought it best that I have a break from my treatments. After the time off we returned to Sloan for my final two weeks of treatments. The remaining treatments went smoothly. I was released and told to return in three months or so for a check. I remember telling Dr. D’Angio that I still had a good amount of pain. At this time they didn’t have CT scans or MRIs so they took some new x-rays and we went back to see Dr. D’Angio. I overheard him telling my dad that he thought I would need more surgery; he believed there was a recurrence of the tumor. My dad was strong and told me not to worry, we would see Dr. Schilp for his opinion. Dr Schilp believed the “tumor” on the x-ray was only scar tissue. I continued following up with Sloan Kettering for several more years before continuing follow up care later with my old buddy Dr. Schilp in Albany.
I returned to school, years passed, and I continued my education. After attending Oneonta State for two years I decided to transfer to The Albany College of Pharmacy for the fall semester 1975. I began to do some research on chordoma in the medical library and even got a copy of my surgical and pathology reports from the archives. I realized then that I was one of the lucky ones.
By this time Linda and I were planning our future together. After I was accepted at the University of Buffalo School of Dentistry in December, we got engaged. Off to Buffalo and dental school we went. Our daughter Kara was born July 16, 1981. Linda had a miscarriage in 1980 so Kara was a special blessing (which she still is today).
After graduation we moved back to Albany where I attended St. Peter’s Hospital for my general practice residency and I began moonlighting at my dad’s dental practice on Saturday mornings. Our son Matt was born on March 24, 1983 during my year at St. Peter’s (blessing number two). I joined the dental practice of my dad and uncle Pete full time at the end of the residency.
My family was most helpful to me during my chordoma journey. Since then, I joined a Facebook group called Chordoma Support and Survivors and found the Chordoma Foundation where I have been in contact with families afflicted to offer my support.
Since 1969 (and my radiation treatment) I have had a neurofibroma, thyroid nodule, parathyroid adenoma and a carotid endarterectomy (all of these were in the field of radiation). I urge anyone who had radiation therapy in the past to follow up and ask for a carotid artery ultrasound if the radiation was in the cervical spine area. I also entered a study dealing with the genetic aspects of chordoma.
As a 50 year survivor, I think my story can give hope to those newly diagnosed. I would like to thank my wife Linda, who has supported me throughout the years, and my siblings: Christine, Janet, Gene (Bud), and Victoria.