My journey with chordoma started in 2014 when I was a senior in high school. One day after tennis practice, my back felt like it was spasming and that I had pulled a muscle. I chalked it up to the normal aches and pains of playing tennis every day. The pain eventually subsided, and I didn’t think about it again for another two years.
Fast forward to winter 2017. I was running on the track one day after tennis practice at SUNY Oneonta and the whole left side of my body went numb. I immediately ran to the athletic trainer and was informed that I would be shut down from sports until they figured out the cause.
Unfortunately, the answer would not be found until after eight long years of pain. From 2017 to 2025 I dealt with increasing pain and lower-back spasms. My symptoms ranged from left leg weakness and numbness to the inability to stand up straight or bend over fully and having to use a cane to walk.
For years I met with doctors who brushed off my pain as nothing, since my scans showed as normal. Knowing deep down that something still didn’t feel right, I kept pursuing an answer. I tried many different doctors in many different specialties at top hospitals in New York City. Despite having pointed out the exact location of the pain repeatedly to different specialists, no one thought to scan my sacrum until I asked specifically for that to be done, eight years after the pain had started. Finally a doctor agreed to order an MRI of my sacrum, which at long last revealed the answers I was seeking. The scan showed two tumors, a large one on my sacrum and another on my tail bone.
In February 2025, I had successful spinal surgery to remove both tumors and fuse my spine. Dr. Arthur Jenkins removed the tumors and confirmed my diagnosis: chordoma. I went on to have proton radiation therapy at the NY Proton Center.
I found the Chordoma Foundation through my radiation oncologist, Dr. Yamada at Memorial Sloan Kettering. He told me that the Foundation was a great resource to connect with other chordoma patients and learn more about the actual diagnosis. The CF has been a great resource for me - I’ve been able to connect with many young adults like myself that are going through the daily struggle of chordoma too. It’s great to have the Foundation as a resource to learn more about new advances in treatment and connect with others around the world.
My advice to anyone who feels like something is wrong in your body is: never let a doctor tell you how you feel, and always trust your gut. I am currently on my journey to remission from chordoma and feeling so much better after my tumor removal surgery.