Who is coordinating your care? You are. – The Philadelphia Inquirer

What one medical expert’s back pain saga taught her about navigating the health-care system.
The sharp and piercing pain in my back was constant. There was no comfortable position to sleep.
As each week passed, my irritability increased, and my cognitive processing decreased. I missed a much-needed and long-awaited MRI because I thought the appointment was at 7:20 p.m.; it was actually scheduled for 7:20 that morning.
I was told that I could only get this MRI appointment covered by insurance after trying “other tactics.” I tried Advil, a week of prednisone, a hot pad, a cold compress, a massage, manipulation, and physical therapy.
Each failed — miserably — and the pain left me spinning.
Our health-care system also has me spinning. At a low point in your life, you must navigate a health-care maze with few clues and make decisions about what to do all the while in debilitating pain.
Upon reflection of this disastrous experience, I have four tips to share with my fellow patients:
Find a patient advocate. You may not be your own best champion. If you’re half as exhausted as I was, it’s hard to think straight. Find a patient advocate at your hospital system, or in your spouse, friend, or children.
Ask questions. Some people are reluctant to ask for a second or third opinion for fear of insulting their doctor. Asking questions and getting multiple opinions is at the heart of patient-centered care and shared clinical decision-making. Don’t be shy.
Get in the queue. Don’t wait to make your next appointment. You can always cancel or reschedule, but getting on a doctor’s calendar — especially if you need to see a hard-to-find specialist — can mean booking weeks or even months in advance.
Consider all options. Throw the kitchen sink at the problem as each approach has the potential to offer relief. Unable to escape my back pain, I decided to try acupuncture, a treatment not typically recommended by traditional doctors. It is the only tactic that’s provided me with relief so far.
Eventually I got my answer: A genetic back-pain syndrome and a herniated disk. The diagnosis required seeing yet another doctor who ordered more tests — this time, an X-ray that revealed a congenital defect in my vertebra. I have a treatment plan that, along with the acupuncture, is helping relieve the pain, for now.
While your doctors are responsible for treating medical conditions you bring to their attention, the system is fragmented, and ultimately, you are in charge of your health. Take it seriously. And maybe double-check your appointment times.
Angela K. Shen is a retired captain in the U.S. Public Health Service, adjunct associate professor at the University of Pennsylvania’s Perelman School of Medicine, and senior fellow at the Leonard Davis Institute of Health Economics.


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