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The Polio Paradox
By Richard L. Bruno
Warner BooksCopyright © 2002 Dr. Richard L. Bruno
All right reserved.
Chapter OnePARADOX. LOST.
Patty slowly limped into my office, leaning heavily on a walker. Her husband followed behind, also seeming to limp, weighed down by shopping bags filled with years of medical records and pounds of X rays. Patty collapsed into a chair. Small and slender, she looked much younger than her fifty-eight years. Black hair framed a pale face showing fatigue, pain, fear, and anger. She fixed me with dark eyes that filled with tears as she said, "I don't want surgery, again!"
I handed Patty tissues and, as she cried, I began looking through her ream of medical reports. During two long years she had had the proverbial "million-dollar workup." Her family doctor started with the standard blood tests and chest X ray, even a virus culture and test for Lyme disease. When all results came back negative, Patty was shipped off to local specialists, where the exotic testing began. The new test battery read like a Wall Street ticker: ANA, ACE, ANCA(C), ANCA(P), MMA, PE, RPR, SPEP. When these results, too, revealed no physical illness, Patty was asked the inevitable question: "Do you think you're depressed?" "Of course I'm depressed," she told the doctors. "I'm exhausted all the time. I can't stay awake during the day, but I can't sleep at night. I have trouble swallowing. My legs burn and aren't strong enough to take me from one end of the house to the other. And my low back always hurts."
Ah! Low back pain. Now that was something the doctors could deal with. So Patty began a new round of studies with a new batch of specialists. She had CAT scans of the chest, abdomen, and pelvis. Somatosensory evoked potentials. MRIs of the brain, neck, and upper back-and, eureka, they found something! Patty had a herniated disc in her neck. Excited by finally finding something abnormal, the doctors sent Patty to the most prestigious university teaching hospital in Manhattan. There she underwent painful studies reminiscent of tests performed on her when she'd had polio. She had a spinal tap, a myelogram in which dye was injected into her spinal fluid, and another MRI, this time with dye injected into her blood. These tests confirmed that she had a herniated disc in her neck but did not explain her exhaustion, her trouble sleeping, swallowing, and walking, or even her low back pain. Yet the neurologist recommended another MRI and a consultation with a neurosurgeon to discuss removing the herniated disc, despite the fact that his report stated he could not blame any of her symptoms on that disc.
Not one of nearly a dozen doctors took into account the simple fact that Patty had had polio. "I told them all," she said. And sure enough, in each and every doctor's report was the same sentence: "History of childhood polio." Even if Patty hadn't told them about the polio, it was obvious. Just by watching her walk it was clear that her left leg was much shorter, smaller, and weaker than her right. I asked how her odyssey of doctor visits and medical tests had begun. Patty sighed and said, "I told the doctor my legs felt weak."
Leg weakness and burning muscles. Exhaustion. Trouble sleeping and swallowing. And, of course, back pain. How many polio survivors like Patty have I seen during the past twenty years? How many patients have come to The Post-Polio Institute after having the million-dollar workup that found "no medical cause" for their symptoms? How many polio survivors around the world have been turned away by doctor after doctor, being told that their symptoms were the result of depression or all in their heads? The answer is tens of thousands.
When I met Patty I couldn't help but shake my head and wonder what year it was. Was it 1978, when no one in the medical community knew that polio survivors were having new symptoms: overwhelming fatigue, muscle weakness, muscle and joint pain, sleep disorders, heightened sensitivity to anesthesia, cold and pain, and difficulty swallowing and breathing? Was it 1984, before an article in Newsweek announced to America that polio survivors were experiencing "The Late Effects of Polio"? Was it 1991, before every orthopedist and rehabilitation medicine specialist in the country had received three special issues of the journal Orthopedics devoted to something called "post-polio sequelae"? Was it even 1995, before the New York Academy of Sciences published the proceedings of an international symposium on "post-polio syndrome"?
No, I met Patty in 2001, twenty years after hundreds of thousands of polio survivors had made clear, and more than fifteen years after the American medical establishment and even the federal government had accepted, that something was indeed wrong inside the bodies of those who survived polio more than forty years before. How could Patty's doctors not know this? How could they have treated-and not treated-her this way?
Patty's experience made me realize that she and all polio survivors are caught in a paradox:
Polio was thought to be a "stable disease." Once polio survivors recovered muscle strength after the polio attack, their physical abilities were supposed to remain for the rest of their lives.
However, contrary to this common belief, polio survivors' strength and abilities were ebbing away. Patty's exasperating, exhausting, and hurtful experiences with her doctors revealed a second painful paradox:
In the 1980s, doctors were ignoring and rejecting the same polio survivors whose plight had riveted the attention of the world's medical community and spurred it to action just thirty years before. It's unacceptable that in the year 2002 polio survivors like Patty are being forced to run such expensive, painful, and unproductive medical gauntlets. With twenty years of articles describing "The Late Effects of Polio," published in journals that include the Journal of the American Medical Association and New England Journal of Medicine, doctors have no excuse for treating polio survivors' new and disabling symptoms as indications of mental illness or rejecting them as a matter of faith, something in which doctors choose not to believe. With volumes of information now available on the Internet with a point and a click, no polio survivor should be told that overwhelming fatigue is "just a symptom of depression," that muscle weakness is "all in your head," or that the late effects of polio "do not exist."
There is no question that polio survivors' new symptoms are real-and that there's no more time to waste in treating them. Half of North America's estimated 1.8 million polio survivors are in their forties, fifties, and sixties, at the peak of their careers, the apogee of their lives, and they are watching as new symptoms cause their ability to work and function ebb away. This need not happen! After two decades of research, we know why polio survivors are having new problems, and we know how to treat and manage them. It is time to set forth the facts-to set the record straight-once and for all.
Excerpted from The Polio Paradox by Richard L. Bruno Copyright © 2002 by Dr. Richard L. Bruno . Excerpted by permission.
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