About 15 years ago I experienced terrible pain in the middle of my back, mostly at night. Physical therapy gave me no relief, so even though I said I’d never get back surgery, I went to a back surgeon who figured I had a hematoma. He assured me it wasn’t cancer, but when he saw it he knew it was nothing he’d ever seen before and sent it to Mayo Clinic.
At the time of my diagnosis, my husband’s oncologist (he had pancreatic cancer) from St. Joe’s hospital in Ann Arbor referred me to a specialist at the University of Michigan. Luckily, she had a DO (osteopathic doctor) in her office who was very knowledgeable about chordomas. I only saw him once, but he was extremely helpful and comforting.
He referred me to Mass General Hospital (MGH). At that time, there were only two proton radiation machines in the country. My chordoma was at L4 which is an unusual location. I stayed at MGH for several months getting proton beam radiation. Living in Boston November through January wasn’t easy, but the hospital was very accommodating and I met others in the same position. I have been fine since! I feel very blessed.
It wasn’t until I got home that I learned of the Chordoma Foundation. I think you are doing a wonderful job!