In 1998, I developed double vision while visiting with my wife’s family in Mississippi. Several MRIs later, surgery was scheduled to remove what was thought to be a pituitary adenoma. Dr. Mark Krautheim discovered that this was not a pituitary adenoma and stopped the surgery to await pathology results. It turned out to be a clival chordoma. I scheduled a minimally invasive procedure with Dr. Hae Dong Jho and followed this with Gamma Knife with Dr. Dale Lunsford and the tumor remained stable for 5 years. At 7 years postdiagnosis, I had another minimally invasive procedure to reduce tumor size. Over the years, I’ve had several more procedures, some complications, but overall, I was able to continue ski instructing, fishing, hunting, and enjoying life.
In 2010, my physical abilities were compromised after the cranial bleed. I developed hydrocephalus and dysmetria. It is now 15 years since my diagnosis. Last year, I had my first open craniotomy and followed that with Proton Therapy. In August of 2013, I entered a clinical trial for the brachyury protein at NIH. My tumor has been stable for over a year.
I do have physical impairments, but with some minor assistance, I can care for my basic needs. I have a sense of humor and enjoy people. My dancing has slowed a bit, but I still enjoy music and a few slow steps. My wife and I travel a lot…usually adding days to medical trips. It has been wonderful to attend family weddings, to enjoy our nieces and nephews, and to visit with friends all across the U.S. Our faith is strong, our physicians have helped us throughout this journey, and our 33-year long marriage supports us in the difficult times. Dr. Jho told me that no one knows how long we have, but we do have choices about how we live what time we do have. I know that I will continue to fight to live, and I am so excited about the new research and possibilities for future treatment. While the diagnosis of chordoma is scary, there is hope for a future and a good one at that.
Tell us your Uncommon Story
Telling your chordoma story in your own words can help others in our community feel more connected and prepared to take on whatever may lie ahead. We invite you share your experiences and insights with others, who can benefit from knowing they’re not alone.