A Life Experience with Clival Chordoma
In the spring of 2011, Matt experienced several episodes of light headedness and dizziness. Ignoring them, the episodes tapered off and disappeared by summer. It wasn’t until January 2012, that Matt started to feel off again. By the second week of January, he realized that he was seeing double when he looked to the right. His first thought was that he needed glasses or had a lazy eye and so he made an optometrist’s appointment. A few days later, the double vision worsened and his primary care physician advised him to go to the ER stating that it is unlikely that he has simply developed a lazy eye.
That Saturday, Matt went in to the ER with his fiancée Stephanie and brother Keegan. After receiving several eye tests, he was given an MRI which revealed a 2.5cm lesion in his skull base abutted up to his brainstem. The radiologist suggested it was a chordoma. Matt was 32 years old when he was diagnosed with chordoma and had his tumor removed less than a month later in a very successful surgery with Dr. Paul Gardner at UPMC.
In one month’s time, we learned an incredible amount about chordoma, the difficulty in finding information, and the decisions patients must make. Some of the best information we gained was given to us from chordoma survivors and experienced surgeons. We hope this website will be a comfort to others and our experience will guide others in finding the right treatment.
Chordoma is a rare, slow-growing malignant neoplasm thought to arise from cellular remnants of the notochord. Described as a bone cancer, a chordoma may arise from bone in the skull base and anywhere along the spine. The two most common locations are cranially at the clivus and in the sacrum at the bottom of the spine.
Treatment for chordoma may include surgery, radiation therapy, and sometimes, chemotherapy. Surgical resection is the preferred treatment when possible as radical resections of tumors with clean margins are associated with a longer disease-free interval. Multidisciplinary surgical teams with great experience in the treatment of chordomas should be sought out for the best treatment.
We would like to share our personal experience with the research, diagnosis, and treatment of a clival chordoma to help others with chordoma and to raise awareness. Because studies on chordomas are limited and many treatment decisions are left up to the patient, we hope our experience will provide some guidance to anyone in a similar situation. We do believe that your physician is the only one who can really make a good recommendation for you.