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Chordoma: Susan's Story

Susan got the shock of her life when she was diagnosed with a chordoma, a tumor growing in her spine.

Susan feeding giraffe at the zooSusan, back to her active routine after her chordoma surgery.

November 4th was Susan’s wedding anniversary, and she and her husband Tim were in the car on their way to The Johns Hopkins Hospital. Just two weeks earlier, Susan had been diagnosed with a chordoma, a tumor that was growing at the base of her spine.

“As an active, lifelong health, nutrition and fitness practitioner who has never been hospitalized, I was in shock.” says Susan. “For the first time in my life, my world suddenly felt like it had spun out of control.”

On the way to Baltimore, Tim asked one more time: “Do you want to keep going, or do you want to just go to the airport and fly someplace wonderful?”

Susan, thinking of future trips and adventures she wanted to share with him, said, “Keep going.”

Chordoma: A Rare Diagnosis

Chordoma is a rare tumor. In Susan’s case, the doctors had caught it early. But she says the diagnosis sent her reeling.

Her general practitioner recommended to see a chordoma specialist at Johns Hopkins. After the consultation, the surgeon recommended a procedure called distal sacrectomy that would involve removing a section including several bones — along with the tumor — from the base of Susan’s spine.

Chordomas affect literally one in a million people, about 300 each year in the U.S. The Johns Hopkins Neurosurgical Spine Center is a popular place for patients with chordomas, and as a result, Johns Hopkins doctors operate on these tumors regularly. Chemo and radiation don’t work effectively with chordomas; often the only way to address them is to operate.

Essential Expertise

Surgery for chordomas is complex. Complete removal is a must, since the risk of recurrence is high. At the same time, the neurosurgeon must take care not to harm the delicate nerves branching off of the spinal cord that give the patient the ability to walk and experience sensation in her lower body. The team must include a skilled plastic surgeon to reconstruct the lower back and close the large incisions associated with sacrectomy.

Knowing the kind of skill required to address the chordoma was what kept her on the road to Johns Hopkins. Susan and her husband left the first consultation with a realistic view of what they were facing, along with a good measure of hope.

Susan says, “I had immediate peace of mind knowing I had made the right decision with [Johns] Hopkins.”

Johns Hopkins saved my life. The women in my family live well into their late 80s, 90s and beyond, and I didn’t want to be the one to break that streak. Now I have every hope and confidence that I will carry on that family record.

-- Susan

Susan, with the nurses and technologists who helped her

The surgeons had to amputate several bones in Susan’s sacrum (lower spine) and include margins of healthy tissue to ensure all the cancer was removed. There was a chance that the surgery can leave her with loss of lower body function, including the ability to walk.

Susan was understandably afraid, but once she made the choice to go ahead with the surgery, she went for it and her courage paid off. The surgeons were able to preserve the important nerves in her pelvis and got a terrific result.

Skill and Compassion

Susan is also grateful for coordination among the members of her entire care team. She writes, “Everyone was empathetic and responsive to any questions and concerns that I had.”

She notes that her anesthesiologist, Dr. Thai Tran Nguyen, and her plastic surgeon Dr. Oluseyi Aliu took time to comfort her and her husband before, during and after surgery.

Susan using her walker at The Johns Hopkins HospitalSusan recovering from her surgery, with the support of her Johns Hopkins nurses and technologists.

The Way Onward

On December 13th, Susan celebrated her birthday, and on that day Aliu, her plastic and reconstructive surgeon, removed the last of the drains, sutures and dressings. Susan says he gave her a hug, wished her well and asked her to keep in touch.

Susan’s homecoming was triumphant. “Tim took all the signs down in our home that read ‘No bending, no lifting, no twisting, no sitting, no steps’ and replaced them with ‘Bend! Lift! Twist! Sit!’”

“I am back to work, the gym, my painting, my causes, my life,” Susan says. “I never needed to open the bottle of pain meds they sent me home with. I am fully functional and have none of the long-term damage that can accompany this type of procedure. I know that not everyone is as fortunate as I was, but I believe my great results had a lot to do with early detection, taking good care of myself and the wonderful care I received from my Johns Hopkins team.

“I feel great, and know that I’m only going to get stronger and feel better with additional recovery time.” 

Susan, smilingSusan is back to normal after intricate surgery to remove a chordoma tumor.
drawing of sacral section of the spine

Chordoma Information

Chordomas are tumors that can occur anywhere within the spine or the base of the skull, but almost a third of them show up in the lower back—the sacral area. Chordomas form from remnants of the notochord, embryonic tissue that eventually forms the center of spinal disks.

Learn more about chordomas.

Dr. Rafael TamargoNicholas Theodore, M.D., Director of the Neurosurgical Spine Center

Neurosurgical Spine Center

The Johns Hopkins Neurosurgical Spine Center is dedicated to relieving pain, restoring function, and implementing cures for a range of conditions affecting the spine. Our team creates highly individualized treatment plans for each patient, ensuring that you get the best results with or without surgery.

Learn more about the Neurosurgical Spine Center.

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