When Docs Get It Wrong: Understanding Misdiagnosis in Spinal Cord Injuries
Only two weeks after my SCI, I was loaded into an ambulance for a 200-mile ride from central California to a rehab hospital in the L.A. area. For the trip, nurses and doctors wanted me to drink plenty of fluids. They gave me a few cans of orange and grapefruit juice. When I arrived at the hospital, the nurse promptly took my last can away and told me it was one of the worst beverages I could drink, then educated me about something I’d never heard of — neurogenic bladder.
Fast forward at warp speed to more than 50 years later. A new primary care doctor concerned about my sodium level told me to drink less water — the opposite of what I had learned was best for bladder and kidneys. I was also taking a diuretic prescribed for high blood pressure and coronary artery disease that had the beneficial side effect of reducing edema in my legs, which were prone to swelling and pressure sores. He wanted me to stop taking the medicine along with drinking less water. He was so consumed with my low sodium level that he was willing to gamble with possibly raising my blood pressure and increasing my risk for lower extremity wounds. But who was he to gamble with my life?
Later that same doctor prescribed a pain medication that is contraindicated if you are taking an anti-clotting med called clopidigrel (Plavix), which is also critical to my coronary artery disease management. I told him an open wound I have might bleed excessively if I take it. I even sent him the study indicating that both the pain med and clopidigrel had an anti-clotting effect and taking both simultaneously is contraindicated. He said he didn’t think it would be a problem at the dosages I would take. So I took it — and the amount of bleeding shocked me. I stopped taking it. He said give it another try. I refused. I’m still in pain, but I think I’m doing the right thing — trying another way to control it.
Now I’m fighting a different wound that looks strange and not showing signs of healing. The Nurse Practitioner at a local wound clinic has diagnosed it as pyoderma gangrenosum, a rare autoimmune condition, but the doctor who runs the clinic, who seldom sees me, is telling me it is not PG. My home health nurses, who take orders from the clinic, are confused and frustrated. The two diagnoses require different treatment.
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What do we do when docs get it wrong? Each of us has the right to refuse treatment, but we are not doctors or wound care specialists. I try to read carefully and only rely on peer-reviewed, respected medical journals and studies that include SCI patients. If it gets too technical, I read the conclusions and insist on having a conversation with my provider.
The root of the problem begins in our medical schools. As good as they are in the United States, they are not up to speed on how to treat complications from SCI, especially complicated wounds, autonomic dysreflexia, debilitating spasms, recurring infections and a host of other SCI-related conditions. But there is hope.
A new generation of doctors is coming up that is more mindful of SCI and its complexities. More and more students with SCIs are being admitted to med schools. Some are taking the lead to educate the educators and their fellow med students. I can foresee a time when doctors will be better educated and new treatment centers that specialize in outpatient SCI care are a possibility.
But this will only happen if we contact our Congressional representatives and push our disability advocacy nonprofits to eliminate medical disparities for those of us with SCI and other paralyzing conditions. In the meantime, get educated, and don’t hesitate to question your doctor. It’s your life.
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