January 24, 2017

Day 25

Nothing new happened this past Monday except some insomnia and late-night computer research. Last week I searched Instagram for #chordoma. The hashtag search lead me to a woman whose husband had chordoma surgery at UPMC (the Pittsburgh hospital) by Dr. Gardner. I immediately sent her a message asking if her husband would be willing to share his experience with me. I included my phone number in hope that I would hear back from her. Two days later I received a message, and she told me her husband, Matt, would be in touch.

Today I was able to spend over an hour talking with Matt on the phone about what he had to undergo after being diagnosed with a chordoma 5 years ago. His story is very similar to mine in that once we found out we had clival chordomas we immediately started our journeys to find the most experienced neurosurgeon.

Matt was (is) blessed with having the much needed support from his amazing wife and brother. From our conversation, it sounded like Matt’s wife really took the reins and went out on a mission to find the best neurosurgeon. Through several Neurosurgical visits, they received a recommendation to consult with Dr. Gardner.

Matt told me all about Dr. Gardner and the fact he knew right away during his visit that he had found “THE” neurosurgeon. Matt asked if I had ever seen Dr. Gardner, and then began explaining how he looks like a 7ft Swedish model…I made sure to take note of that important piece of information.

It was helpful to connect with Matt and learn about his journey through the chordoma removal, post surgical pain, nostril stents for 3 weeks post surgery (Mmmmmmmmmm, can’t wait!!!), and the need for several weeks’ rest during his healing process. He had to remain in Pittsburg for around 3–4 weeks after surgery since the doctors involved needed to follow his progress. The amazing thing is that Matt is now 5 years cancer free with zero neurological deficits.

His secrets: stay positive, stop doing research, never give up,and never give in.