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Chronic Disease, In the News, otolaryngology, Patient Care

A look at one woman’s long journey to diagnosis and treatment of rare disorder

VertigoThis week’s Medical Mysteries column in The Washington Post tells the story of a woman who lived with debilitating vertigo and odd tinnitus. Baltimore’s Rachel Miller lived with dizziness, the exaggerated sound of her heart and breathing and even anomalies with her vision for five years before she was diagnosed and treated. Many of the doctors she saw dismissed her symptoms as psychosomatic and Miller even went through a period when she stopped seeing doctors for her condition. Miller described her travails this way:

“I had started to feel like a person in one of those stories where someone has been committed to a mental hospital by mistake or malice and they desperately try to appear sane,” recalled Miller, now 53. She began to wonder if she really was crazy; numerous tests had ruled out a host of possible causes, including a brain tumor. Continuing to look for answers seemed futile, since all the doctors she had seen had failed to come up with anything conclusive.

But then she went to see David Zee, MD, who diagnosed her strange symptoms as a rare disorder called superior canal dehiscence syndrome (SCDS), when a small hole or a thin area of the temporal bone allows the fluid of the inner ear to touch the brain, transmitting sounds from the rest of the body, like our heartbeat or breathing, or even the movement of our eyeballs. John Carey, MD, operated on Miller, filling the small hole with bone and other tissue from the skull. As the piece notes, both Carey and Zee trained with Lloyd Minor, MD, now dean of the Stanford School of Medicine, when he was at Johns Hopkins University. Minor discovered SCDS in 1995 and developed the surgical treatment that Miller subsequently received in 2012.

Miller has recovered now, with only occasional problems when she gets a cold. But her story points out how difficult it can be to diagnose rare medical problems.

Previously: NIH network designed to diagnose, develop possible treatments for rare, unidentified diseases and Using crowdsourcing to diagnose medical mysteries
Photo by Mikael Tigerström

Imaging, Patient Care, Stanford News, Technology

Every foot has a story: Why communication is key in radiology

Every foot has a story: Why communication is key in radiology

11739904364_92e702bc65_zBack in the day, radiology departments were simpler. After obtaining an x-ray, the technologist would hand off the images to the radiologist. In the process, the radiologist might ask about the technologist’s family, how Aunt Lucy was faring or how that day’s commute had been. Maybe a senior technologist would walk by, glance at the pinned up images and offer the junior technologist some advice on how to improve the positioning of the patient. The primary care doctor and the junior radiologist might chat about the patient over their lunchtime tennis game.

Not to say it wasn’t busy — it was. But in a smaller, simpler environment, informal relationships were easier to maintain. Despite their informality, these relationships, and the communication that went with them, served as a powerful means to improve patient care, according to Stanford radiologist David Larson, MD.

Fast forward to today. At a busy, top-tier hospital, radiologists might not know their colleagues, much less the technologists or referring physicians. All images remain on computers — no need to pin anything up for public viewing, or to receive unsolicited comments, or advice.

The many technological improvements, as well as the scale and speed of modern radiology, have inadvertently thwarted communication, Larson and colleagues write in a paper recently published in the American Journal of Roentgenology. Here’s Larson:

In radiology, we’re in the business of information. Everything we do from the time that somebody even thinks of a question, to the time they ask for an imaging study, to when we then interpret the images, is really all about information.

So we need to be really good at moving that information efficiently and effectively, which means we need to be good at communicating… But in many ways, we’re thinking as if we still operate in a small, simple environment, even though we’re operating in a large, complex environment.

For example, Larson said, in addition to having the images, it’s also important for radiologists to know about a patient’s history. He said information that someone runs 20 miles a week, for example, makes a big difference when interpreting an image of a foot. “I have been in the situation where I looked at the study and was about to call it normal. Then I looked at the history, looked back at the study, and found the very subtle stress fracture,” Larson said. “A good history makes that possible.”

Larson pointed out that Stanford is continuously improving its own communication processes. For example, the hospital recently hired a reading room assistant, what Larson referred to as an “air traffic controller,” to direct queries and facilitate communication among physicians.

Previously: Despite genetic advances, detection still key in breast cancer, Using 3-D technology to screen for breast cancer and Better communication between caregivers reduces medical errors, study finds
Photo by Jill Carlson

Ask Stanford Med, Chronic Disease, Events, Nutrition

Diabetes and nutrition: Why healthy eating is a key component of prevention and management

Diabetes and nutrition: Why healthy eating is a key component of prevention and management

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The prevalence of type 2 diabetes is expected to rise sharply over the next three decades. Recent data from the Centers for Disease Control and Prevention shows that if current trends continue, an estimated 1 in 3 adults will be diagnosed with the disorder by 2050. Eating healthy is a key component of managing diabetes and reducing one’s risk for developing the disease. But what does eating right for diabetes actually mean?

Kathleen Kenny, MD, a clinical associate professor at Stanford, and Jessica Shipley, a clinical dietitian at Stanford Hospital & Clinics, will answer this question during a talk focused on diabetes and nutrition on Dec. 4. The Stanford Health Library event will be held at the Arrillaga Alumni Center on campus, where attendees can also have their blood glucose checked. The conversation will also be webcasted for those unable to attend in person.

To promote discussion on the topic in advance of the lecture, I reached out to Kenny and asked about nutrition principles and guidelines for patients with diabetes and others interested in how healthy eating can prevent or delay onset of the disease. In the first installment of a two-part Q&A, she explains the advantages of eating a Mediterranean diet and the importance of eating fiber-rich foods.

Are there any ways to reverse or slow the progression of pre-diabetes? Are there specific diets that may be useful to help prevent or control diabetes?

One of the most common questions my diabetic patients ask is how they can reduce or eliminate diabetes medications. Others are found to be pre-diabetic on the basis of an “A1c” or an impaired fasting glucose, and want to know how to prevent diabetes. Several randomized trials have shown that healthy diet and exercise can reverse and also delay the onset of diabetes.

One of the largest trials is the often-cited Diabetes Prevention Program, which randomized more than 3,000 patients to diet/lifestyle versus metformin versus placebo. The most effective strategy was diet and lifestyle, showing a dramatic 58 precent reduction in the rate of developing diabetes. This surpassed the drug therapy with metformin. Approximately 5 percent of patients in the lifestyle group developed diabetes annually, as compared to 11 percent in the placebo arm. Notably, there was a 16 percent reduction in diabetes risk with every 1 kg reduction in weight. This seems attainable for many patients.

There was also meta-analysis last year looking at different diets for patients with known diabetes, in terms of weight loss and improving their diabetes control. In this data compilation, the Mediterranean diet had the greatest weight loss, followed by the low carbohydrate diet. In terms of A1c reduction, the Mediterranean diet had a reduction of -0.47 percent, and the low carbohydrate -0.12 percent. But all the diets studied resulted in better glycemic control. Many studies have shown that diets high in glycemic load are linked to higher diabetes risk (particularly in overweight women), and contribute to central body fat , so it is recommended that diabetics or those at risk limit their intake of high glycemic index foods both to delay and to help control their diabetes. Additionally, there are some data suggesting that adherence and success rate may be higher for low-carbohydrate diets in patients with diabetes and insulin resistance.

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Imaging, In the News, Neuroscience, Research, Stanford News

Studies on ME/chronic fatigue syndrome continue to grab headlines, spur conversation

Studies on ME/chronic fatigue syndrome continue to grab headlines, spur conversation

neural-pathways-221719_640The proof’s in the pudding, the old saying — which seems slightly seasonal — goes. So when a Stanford team compared images of brains affected by chronic fatigue syndrome, with those healthy brains, they found noticeable differences, including misshaped white matter, the cells that coordinate communication between brain regions. The news garnered immediate attention and has now been featured in a New York Times  piece:

The relationship between the symptoms experienced by patients and the findings is unclear. The two parts of the brain connected by the abnormally shaped white matter are believed to be important for language use, said Michael Zeineh, MD, a radiologist at Stanford and the lead author…

“This opens the door to more detailed investigations because now we have targets for future research,” he said.

The Times also refers to another study, published in March, that found cerebral inflammation in patients who suffer from chronic fatigue syndrome, or, as it is also called, myalgic encephalomyelitis/ C.F.S. This is big news for a condition that’s often misdiagnosed — patients are sometimes forced to visit numerous doctors and battle insurance companies — all while fighting the debilitating symptoms — before securing a diagnosis.

The Times touches on the tricky politics of the disease as well:

Next month, a panel convened by the National Institutes of Health will hold a two-day workshop  charged with “advancing the research” on the illness of the disorder. The Institute of Medicine is conducting a separate, government-sponsored initiative to assess and evaluate the many sets of diagnostic criteria for M.E./C.F.S., with the results expected next year.

Advocacy groups have questioned the rationale for two separate efforts. They have also criticized the initiatives because in both cases many people with little or no expertise in M.E./C.F.S. will be voting on recommendations that could have a significant impact on the government’s future efforts.

Previously: Patients’ reaction to ME/CFS coverage in Stanford Medicine magazine, Some headway on chronic fatigue syndrome: Brain abnormalities pinpointed and Unbroken: A chronic fatigue syndrome patient’s long road to recovery
Image by geralt

Genetics, In the News, Medicine and Society, Research

James Watson to put Nobel medal on the auction block

James Watson to put Nobel medal on the auction block

DNA Template molecular modelLooking for the perfect holiday gift for the science geek in your life? Have an extra $3 million sitting around? If so, you can bid on James Watson’s Nobel Medal, which will be auctioned off by Christie’s on December 4 and is expected to fetch between $2.5 and $3.5 million. Watson, now 86, won the Nobel Prize in Physiology or Medicine in 1962 for deciphering the structure of DNA, along with Francis Crick and Maurice Wilkins. An article in Reuters noted the significance of the medal’s auction and the 1953 finding for which it was awarded:

“It is recognition of probably the most significant scientific breakthrough of the 20th century and the impact of it is only being played out now in the 21st century,” said Francis Wahlgren, international head of books and manuscripts at Christie’s. “Whole industries have developed around it.”

Countless subsequent scientific discoveries in the last half century have their foundation in Watson and Crick’s work. Last year, Francis Crick’s Nobel medal garnered $2.27 million. Watson’s handwritten notes for his acceptance speech will also be auctioned the same day. He plans to donate part of the proceeds from the sales to charities and to scientific research.

Previously: Coming soon: A genome test that costs less than a new pair of shoes, NPR explores the pros and cons of scientists sequencing their own genes, and Image of the Week: Watson and Crick
Photo of thymine template from Watson and Crick’s 1953 molecular model by Science Museum London

Global Health, In the News, Public Health, Research, Science Policy

Gates Foundation makes bold moves toward open access publication of grantee research

Gates Foundation makes bold moves toward open access publication of grantee research

Bill and Melinda GatesLast week, the Gates Foundation announced that it will now require all grantees to make the results of their research publicly accessible immediately. Researchers will only be able to publish their research in scientific journals that make the published papers accessible via open access – which rules out publishing in many prominent journals such as Science and Nature.

Inside Higher Education detailed the new policy:

The sweeping open access policy, which signals the foundation’s full-throated approval for the public availability of research, will go into effect Jan. 1, 2015, and cover all new projects made possible with funding from the foundation. The foundation will ease grant recipients into the policy, allowing them to embargo their work for 12 months, but come 2017, “All publications shall be available immediately upon their publication, without any embargo period.”

“We believe that our new open access policy is very much in alignment with the open access movement which has gained momentum in recent years, championed by the NIH, PLoS, Research Councils UK, Wellcome Trust, the U.S. government and most recently the WHO,” a spokeswoman for the foundation said in an email. “The publishing world is changing rapidly as well, with many prestigious peer-reviewed journals adopting services to support open access. We believe that now is the right time to join the leading funding institutions by requiring the open access publication of our funded research.”

But the Gates Foundation policy goes further than other funding instutions. Once the papers are available publicly, they must be licensed so that others can use that data freely, even for commercial purposes. A news article in Nature explains the change:

The Gates Foundation’s policy has a second, more onerous twist which appears to put it directly in conflict with many non-OA journals now, rather than in 2017. Once made open, papers must be published under a license that legally allows unrestricted re-use — including for commercial purposes. This might include ‘mining’ the text with computer software to draw conclusions and mix it with other work, distributing translations of the text, or selling republished versions.  In the parlance of Creative Commons, a non-profit organization based in Mountain View, California, this is the CC-BY licence (where BY indicates that credit must be given to the author of the original work).

This demand goes further than any other funding agency has dared. The UK’s Wellcome Trust, for example, demands a CC-BY license when it is paying for a paper’s publication — but does not require it for the archived version of a manuscript published in a paywalled journal. Indeed, many researchers actively dislike the thought of allowing such liberal re-use of their work, surveys have suggested. But Gates Foundation spokeswoman Amy Enright says that “author-archived articles (even those made available after a 12-month delay) will need to be available after the 12 month period on terms and conditions equivalent to those in a CC-BY license.”

The Gates Foundation has funded approximately $32 billion in research since its inception in 2000 and funds about $900 million in global health funds annually. That’s a smaller impact than, say the U.S. National Institutes of Health, which funds about $30 billion in health research. But it does represent nearly 3,000 papers published in 2012 and 2013. Only 30 percent of those were published in open access journals.

Previously: Teen cancer researcher Jack Andraka discusses open access in science, stagnation in medicineExploring the “dark side of open access”, White House to highlight Stanford professors as “Champions of Change”Stanford neurosurgeon launches new open-source medical journal built on a crowdsourcing modelDiscussing the benefits of open access in science and How open access publishing benefits patients
Photo of Bill and Melinda Gates by Kjetil Ree

Medical Education, Medicine and Literature, Patient Care

Prescribing a story? Medicine meets literature in “narrative medicine”

Prescribing a story? Medicine meets literature in "narrative medicine"

woman reading bookIn the November issue of The Lancet, Chris Adrian, MD, postulates about what might be called “narrative medicine.” How do stories and poems alter our experience of caregiving, illness, and suffering? Does literature “help”?

Adrian, who is trained in both creative writing and medicine, thinks that artistic expressions of experience do bring something to clinical care, whether care is experienced on the giving or the receiving end. He also finds these benefits ineffable, impossible to quantify, study, or prove, and all the more powerful for it. He writes:

Lately I feel a strong, anxious conviction that writing and reading fiction and poetry might in fact execute some kind of alleviating change upon our suffering, even in the world of the hospital, upon that portion of our suffering related to illness and death. I can’t begin to argue logically or systematically how it actually does this. Accidentally or miraculously is about as far as I get when I try.

The reason literature, or perhaps art more generally, complements clinical practice is because it communicates in an entirely different language that speaks to different aspects of the human experience. Adrian ponders a line from W.H. Auden’s  “In Memory of W.B. Yeats,” which reads, “For poetry makes nothing happen…” and speculates:

…which is not by any means actually nothing, but instead a domain of activity so estranged from our degraded understanding of what human beings can do in the world that [Auden] had to call it Nothing to say what he meant.

Adrian, who is on faculty at the Columbia University Medical Center and an accomplished author, feels that medicine doesn’t train doctors how to interact with the less-scientific aspects of humans experiencing illness, injury, and suffering. There’s a gap or an absence in most medical care, and that’s where storytelling can step in. Columbia’s Program in Narrative Medicine, which originated in 2000, is dedicated to this idea. It draws participants from a vast array of fields, and inspired the International Network of Narrative Medicine. As its website states, “The care of the sick unfolds in stories. The effective practice of healthcare requires the ability to recognize, absorb, interpret, and act on the stories and plights of others. Medicine practiced with narrative competence is a model for humane and effective medical practice.”

Storytelling in medicine isn’t just for medical practitioners to engage in. Adrian’s musing was inspired by a new book by Carol Levine, Living in the Land of Limbo: Fiction and Poetry about Family Caregiving, which collects the stories of family members who dedicate uncountable resources to caring for sick loved ones. Consider also the longstanding role of the hospital chaplain, and the recent proliferation of doulas, both of whom are specialized professionals who work “next-to” medicine, absorbing emotions, anxieties, and fears, and providing nurturance. And then, of course, there are the patients themselves, who in Adrian’s words might benefit from “art as a considered clinical intervention… very nearly like prescribing a story.”

Previously: Intersection of arts and medicine a benefit to both, report finds, Literature and medicine at life’s end, Thoughts on the arts and humanities in shaping a medical career and Physicians turn to books to better understand patients, selves
Photo by Alex

Neuroscience, Podcasts, Science, Stanford News

Stanford neurobiologist Bill Newsome: Seeking gains for the brain

Stanford neurobiologist Bill Newsome: Seeking gains for the brain

14601014695_30cfe1972d_zBill Newsome, PhD, knows the brain perhaps as well as the back of his hand. The Stanford neurobiologist was vice chair of the federal BRAIN Initiative launched by President Obama, and he directs the Stanford Neurosciences Institute. From that spot, he’s just funded a first round of interdisciplinary grants to Stanford faculty that he calls “risk taking.”  The need, he told me in this just-published 1:2:1 podcast, is critical:

When biomedical research money gets tight, as it now is, the funding agencies tend to get conservative. Right now we have these talented faculty at Stanford, many of them young faculty. They’re at the most creative parts of their career.  They’re at a place where they’re thinking big and dreaming big. We wanted to create this mechanism to allow them to do that.

I asked Newsome about the greatest challenges for neuroscience in the next few years. He had one word: technology. “If we were to improve the technology… If we could read out signals from the human brain and read in signals, actually do the circuit-tuning in the human brain non-invasively, at a spatial scale on the order of a millimeter or less and with fairly rapid time, it would revolutionize neuroscience,” he said.

So paint the picture, I asked, and  look ten years out. What would you like to see as far as progress? He told me:

I would like to see fundamental, substantive change on at least one devastating neurological or psychiatric disease. I don’t really care which one. Give me Alzheimer’s. Give me autism. Give me depression. Give me Parkinson’s disease. At the end of 10 years, if we can really have a breakthrough in the understanding of what causes one of those diseases mechanistically and have a therapy that dramatically improves people’s lives… I would say, ‘It’s worth it. We’ve done our job.’

Any worries or words of caution? He laments the current state of federal funding for science and worries that fiscal constraints will squeeze out young star scientists. “How do you keep convincing talented people to come into the field?” he said. “We’re deprioritizing science… How do we convince our brightest, our best, that this is a field with a really bright future?”

Previously: Deciphering “three pounds of goo” with Stanford neurobiologist Bill Newsome, Neuroscientists dream big, come up with ideas for prosthetics, mental health, stroke and more, BRAIN Initiative and the Human Brain Project: Aiming to understand how the brain works, Brain’s gain: Stanford neuroscientist discusses two major new initiatives and Co-leader of Obama’s BRAIN Initiative to direct Stanford’s interdisciplinary neuroscience institute
Photo by Allan Ajifo

Nutrition, Pediatrics, Research, Stanford News

Taking a bite out of food allergies: Stanford doctors exploring new way to help sufferers

Taking a bite out of food allergies: Stanford doctors exploring new way to help sufferers

allergen powdersPeople with food allergies and their families live lives of unremitting worry.  They are perfectly healthy unless they eat an allergen and then suddenly they are at death’s door.

When 9-year-old Maya Bodnick went on a skiing trip with her cousin, her aunt let her pick out some malt balls from a candy bin.  Within minutes her face began to swell, her throat hurt, and she vomited. When Tessa Yates Grosso was eight, she ate some spring rolls that turned out to contain wheat, which was one of her allergies – soon she began to lose consciousness. Her mother watched, terrified, as a medical team struggled to revive her by injecting two syringes of epinephrine and an array of other drugs. When my son Kieran was a toddler, he got hold of a cookie that contained eggs and nuts – both of which he was allergic to – and although I got the cookie out of his mouth before he bit down, and I rinsed his mouth out with water, he stopped breathing on the way to the hospital.

But for all three kids and their families, that life is now over after participating in a trial of a radical treatment for food allergies, headed by Kari Nadeau, MD, PhD. The treatment, known as oral immunotherapy, retrains the immune system by giving the patients micro-doses of the allergen and gradually working up – over months or years – to a full serving.  Nadeau has recently discovered that oral immunotherapy actually causes epigenetic changes – physical changes in patients’ genes that affect the way they are expressed.

Food allergic people are initially astonished – and terrified – by the suggestion they should eat the foods that had once poisoned them. But it turns out that – no matter how severe the allergy – everyone’s immune system can be retrained. Moreover, Nadeau discovered, the treatment works equally well for children and adults. At the newly created Food Allergy Center, Nadeau and her team will continue to research not only oral immunotherapy, but treatments for food allergies that do not involve eating the food. The center will also treat food sensitivities and intolerances, which patients frequently confuse with food allergies.

Read more about Maya, Tessa and Kieran’s treatment – and their new lives – here.

Melanie Thernstrom is a freelance writer.

Previously: Stanford Medicine magazine traverses the immune system, Simultaneous treatment for several food allergies passes safety hurdle, Stanford team shows, Researchers show how DNA-based test could keep peanut allergy at bay, A mom’s perspective on a food allergy trial and Searching for a cure for pediatric food allergies
Photo of allergen powders by Art Streiber

Grand Roundup

Grand Roundup: Top posts for week of Nov. 16

The five most-read stories this week on Scope were:

My last promises to her: Advocate for lung cancer awareness and live life to the fullest: In the latest installment of our patient-penned Inspire series, a California man talks about becoming a patient advocate after a lung-cancer diagnosis.

Stanford anesthesiologist explores consciousness – and unconsciousness: Anesthesiologist Divya Chander, MD, PhD, is one of a leading group of neuroscientists and anesthesiologists who are using high-tech monitoring equipment in the operating room to explore the nature of consciousness. She discusses her work in this Q&A.

Learning the pelvic exam with Project Prepare: In this piece, part of the SMS Unplugged series, Hamsika Chandrasekar discusses how a group of patient/educators is teaching medical students the art of performing a delicate exam.

Tackling the stigma of lung cancer – and showing the real faces of the disease: After learning that the first question typically asked of lung cancer patients is “Did you smoke?” Janet Freeman-Daily set out to help change public perception of her disease.

Big data approach identifies new stent drug that could help prevent heart attacks: By using a “big data” computational approach, learning about the genetic pathways involved in coronary artery disease, then testing the new theories on mice models in the lab, researchers at Stanford and Columbia were able to pinpoint a potential new treatment for patients who need stents.

And still going strong – the most popular post from the past:

What are the consequences of sleep deprivation?: Brandon Peters, MD, an adjunct clinical faculty member at the Stanford Center for Sleep Sciences and Medicine, explains how lack of sleep can negatively affect a person’s well-being in this Huffington Post piece.

Stanford Medicine Resources: