Chordoma Foundation

Carolyn’s Uncommon Story: Ask for help, because it will come from everywhere, even places you didn’t expect

Carolyn and Ryan's uncommon chordoma story

In early 2018, my husband and I bought a swing set for our two young children. In late March 2018, he built a cinderblock platform for it. After that weekend, he never felt right. He was exhausted, going to bed by 8:30, wasn’t eating, and wasn’t interacting with us due to the severity of the fatigue. Ryan developed a terrible headache in the back of his head. About two weeks later, he was in the ER with lactic acidosis. They gave him some fluids and we left with orders to follow-up with an endocrinologist due to an abnormal thyroid test. I scheduled him with the endocrinologist and found a primary care doctor.

We saw both doctors May 3. The endocrinologist wanted more bloodwork drawn the following Tuesday. The primary care doctor thought he was healthy but decided to run a testosterone test. We got the results Saturday night that his testosterone was in the 80s (should have been in the 600+ mark). I called the endocrinologist Monday, and asked for a repeat draw because I thought it was an error. We got those results Wednesday morning, and it was now in the 70s. The nurse called and told me Ryan had an MRI scheduled in 20 minutes. Two hours later, they called and told me there was a mass.

The original MRI stated it appeared to be a chordoma. However, our first surgeon swore up and down it wasn’t. The first surgery was easy. The doctor was confident he got it all. On June 12, our world was rocked when we learned it was a chordoma, then in the following weeks we learned there was still tremendous tumor left. We followed up with MD Anderson where he had a second surgery. Dr. Raza got all of it out, but it had spread into the cavernous sinus and the first layer of dura. There were no symptoms and our surgeon said we were lucky to have caught it. He did end up with meningitis from this surgery due to a spinal fluid leak, but it was easily resolved with 5 more days in the hospital and 10 days of home antibiotics. He ended the year with 35 rounds of proton beam radiation with very little side effects.

Ryan's uncommon chordoma story

My biggest piece of advice would be to listen to the people at the Chordoma Foundation (they originally said I should wait to see another doctor before the first surgery if there was a single bit of suspicion that it may be a chordoma). Ask for help, because it will come from everywhere, even places you didn’t expect. Ryan is now a stay at home dad and travels to Houston every three months for the next three years. We have all slowed down and enjoy the moments more. We can’t live our lives for those three months, hoping for good news. We just make the most out of each day and try to make memories to last a lifetime, no matter how long that may be.



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