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Doctors failed to diagnose her disease. Now nurse feels betrayed

Every patient in Oregon would probably benefit from having an advocate working on his or her behalf during a doctor or hospital visit. Having someone who knows the ins and outs of the medical industry and what questions to ask would likely go a long way toward reducing medical errors due to negligence.

Such a practice might reduce instances of serious ailments being missed. It might also increase the chances that the right patients get the right treatments at the right time to ensure the best possible outcomes.

But as the case of a former emergency room nurse in Georgia reflects, simply having inside wisdom isn’t always a hedge against a missed diagnosis. And now, this wife and mother of two young children has reached a stage where she has no treatment options left. She is dying.

What makes the case all the more sad is that despite her experience as a nurse, she found herself being dismissed by doctors she went to see. And the specialist who finally did determine what was wrong with her says that had those doctors been more attentive, she could have received treatment that might have saved her.

From the time she displayed her first symptoms — a headache around her right eye, nausea and dizzy spells — to the time she finally got her diagnosis, three doctors had failed to spot that she had a condition called syringomyelia, pronounced sear-IN-go-my-EEL-ya.

According to the National Institute of Neurological Disorders and Strokes of the National Institutes of Health, syringomyelia patients suffer from cysts called syrinxes in the spinal cord. As they expand over time they destroy part of the spinal cord and trigger different neurological symptoms depending on where on the cord the cysts exist.

Information from the NIH says that treatment for syringomyelia typically involves surgery to create more space around a syrinx site where spinal fluid has pooled and increased pressure. If the syringomyelia is caused by a tumor, removing the growth almost always eliminates the syrinx.

The nurse in this case is coming to terms with her terminal condition, but she is not going quietly. She has started a nonprofit group to educate the doctors and the public about syringomyelia in hopes that others won’t suffer as she has.

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