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Georgia Koutla


I was first diagnosed with sacral chordoma in 2008 accidentally during an MRI. The tumor was a big ball, and I remember the radiologist saying that he couldn’t tell what it was. What a shock! I thought, “Now what?” First thing the next morning, I looked for a good neurosurgeon. The medical team in Greece proposed that I go out of Europe to find the best treatment with a more experienced team.

At Johns Hopkins Medicine, I met the best human and doctor, Dr. Ziya Gokaslan, and the journey began. My surgery was 12 hours. They found a watermelon-sized tumor and removed it with clear margins and normal organ function. A miracle for everyone!

But the tumor came back and I’ve had three more surgeries at Johns Hopkins and underwent CyberKnife and IMRT treatment in Greece. Unfortunately, I had a colostomy and stereotactic radiosurgery and I’m on chemotherapy due to metastases.

But I’m still alive.

I used to be full of energy, giving lessons to my students, and being out all day. But now I can’t do the things I used to do — my soul wants to, but my body can’t follow. I have my family: parents, husband, and a 19-year-old son who support me, but at the same time I know I must cope with this alone. I have the best doctor in the world who knows me very well, and he always gives me hope and the best care. I’m hoping for a therapy to be found for all of us who are struggling for life!

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.

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