Tori Geib of Bellefontaine, Ohio suffered from chronic back pain. Since it’s estimated that about 80% of Americans will at some point experience back pain, it certainly wasn’t unusual when she sought medical attention.
Tori visited three different rheumatologists in attempts to find the real cause of her chronic back pain. She got all kinds of explanations from her doctors, including depression-related psychosomatic pain, fibromyalgia, or just too much stress at work.
“I almost felt like I was gaslighting myself. Was this all in my head? Surely all these doctors couldn’t be wrong; after all, they were the experts. But deep down, I knew this was real, physical pain. I didn’t know what was causing my back to hurt so badly, but I knew one thing: I didn’t feel like myself.”
But nothing seemed to solve her painful condition. Tori found herself in two urgent care facilities because of how unbearable her back pain was. She was treated with everything from steroids and NSAIDs to muscle relaxers and anti-depressants.
After a year of chronic back pain, Tori found a hard lump in her breast. She was able to book a mammogram the next day, and within two weeks, she found out she had breast cancer.
“The news was devastating,” Tori remembers. But it was about to get worse. Tori went to Ohio State University in Colombus to see an oncologist. It was there she mentioned her chronic back pain and finally felt heard. The medical team conducted a CT scan and found that her breast cancer had metastasized to her spine.
“When I learned that the terrible pain in my back was due to metastatic cancer in my spine (and not fibromyalgia or overdoing it at work, as my previous doctors believed), I first wanted to hug my oncologist. Not because I was excited to have cancer, but because someone finally gave me an answer that explained why my back had hurt so much, confirming that it wasn’t all in my head.”
Unfortunately, Tori was diagnosed with terminal cancer. What’s more, one of her vertebrae had been subjected to so much pressure that it had fractured. She can’t help but think about all of the appointments that could have found the true cause of her pain much earlier.
“A note had been left in my medical records by one of the doctors I had seen for the back pain. It mentioned that “suspicious lesions” were found on my spine and hip bone after a scan I had a year earlier. No one ever followed up or told me about this.”
Today, Tori focuses on staying as healthy as possible, living her life to the fullest, and spreading the word about misdiagnoses.
“My treatment schedule is pretty rigorous. I sometimes have three or four appointments in a day. But staying alive is my full-time job now….
“Maintaining my quality of life is the biggest thing for me now. If I know quantity is going to be short, then the time I’m going to have is going to be good time. I’m always going to have a little bit of pain, but it’s about what I can tolerate, and I have a conversation going with my palliative care team, who is fantastic….
Tori highly recommends these tips for anyone who feels they’re not being heard by their doctor:
- Be your own advocate
- Get a second, third, fourth, however many opinions you need so you feel comfortable.
- Ask for copies of all your reports, tests, and scans, so you can read them yourself. Bring them to new providers, so they can see what has already been done.
- Go to your next appointment with questions ready.
- Above all, trust yourself; you know what is normal and what is not for your body.
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