I was diagnosed with chordoma of the clivus in December 2016. I had the tumor for at least nine years and never had any symptoms. I started getting a weird headache and finally had a CAT scan done where the radiologist thought it was a cyst. They recommended me to see a neurosurgeon. The neurosurgeon sent me for an MRI and it revealed the tumor.
While trying to absorb the bad news, my wife and I were on a mission to find the right team to deal with this. We ended up finding the Chordoma Foundation and were very excited to find we were not alone. After research, we decided on the University of Michigan medical center, in Ann Arbor, MI. The team of doctors had a lot of experience with chordomas. Had the surgery on April 12, 2017. They were able to remove 99% of the tumor. They were all great. I will be starting proton radiation this month.
I was lucky to find this Foundation that directed me to the right doctors. I do not have any long-term side effects from the surgery. God Bless.
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.