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Medicine and Literature, Orthopedics, Patient Care, Pediatrics, Stanford News

From post-WWII Russia To 7-year-old Giana Brown, a limb-lengthening method evolves

From post-WWII Russia To 7-year-old Giana Brown, a limb-lengthening method evolves

young patientGiana Brown is one tough little girl. When she was 7 years old, an orthopedic surgeon, Jeffrey Young, MD, from Lucile Packard Children’s Hospital Stanford, placed a brace called a Taylor Spatial Frame on her lower left leg that would help lengthen it about three inches to match her right leg. To accomplish this, the brace would require adjustments of about one millimeter a day for more than six months.

Her parents could have made those adjustments, but Giana insisted on doing it herself. She used a little wrench to turn the knobs that would lengthen the struts on the brace according to a computer-generated, color-coded prescription sheet.

Sculpting Bones,” the story of Giana’s rare bone disorder, her surgery and her recovery, is featured in this summer’s edition of Stanford Medicine magazine. An animated graphic illustrates in detail how the brace and bone biology work together to lengthen limbs. The story focuses not only the remarkable method of cutting a bone and slowly lengthening the gap to allow it to grow — called “distraction osteogensis” — but also on the unusual history of the “external fixator” device that makes this growth possible.

The device originated in a remote region of Siberia, Russia, nearly 70 years ago, where a young doctor, Gavriil Ilizarov, MD, cared for a patient population that included soldiers returning from the front lines of World War II with a vast array of bone injuries. Ilizarov discovered his method of distraction osteogenesis by accident, and a revolutionary method of bone lengthening was born.

Several decades later, orthopedic surgeon Charles Taylor, MD, and his brother, engineer Harold Taylor, modernized the device, changing the angle of the struts for more flexibility, and creating a computer program that generated prescriptions, “accurate to within a millionth of an inch and a ten-thousandth of a degree,” for adjusting the struts daily.

Although Giana’s dad, Greg, accurately describes the device as “draconian-looking,” her surgeon, Young, hails it as an ideal tool for healing his pediatric patients. “I really like how the technology allows me to basically sculpt the bone,” he says. “It’s the perfect blend of engineering and art.”

For Giana Brown, the accuracy, simplicity, and artistry of the device has paid off: She’s back to running and playing with her friends the way a healthy, happy kid should. Read her story – and her tips for making life a little easier in the frame -  here.

Previously: Stanford Medicine magazine opens up the world of surgery
Photo of Giana Brown by Max Aguilera-Hellweg

Patient Care, Pediatrics, Stanford News, Videos

Pediatric patients create vibrant mural with help from Hewlett-Packard and DreamWorks Animation

Pediatric patients create vibrant mural with help from Hewlett-Packard and DreamWorks Animation

Here’s a feel-good story that will lift your spirits. Over at Lucile Packard Children’s Hospital Stanford, patients are working with volunteers from Hewlett-Packard and DreamWorks Animation to construct a unique piece of artwork designed digitally or drawn by hand. As described in the above video, the DreamWorks team worked with children in the hospital’s onsite school to create imaginary creatures, and next built a background and composited the patients’ art into a large mural. Then, Hewlett-Packard printed the custom designs onto PVC-free wallpaper. The final mural now hangs in Hewlett-Packard’s Palo Alto headquarters.

Previously: Ensuring young dialysis patients make the grade

Patient Care, Pediatrics, Pregnancy, Stanford News, Women's Health

A prenatal partnership that benefits patients, medical students

A prenatal partnership that benefits patients, medical students

prenatal partnership

Over on the Lucile Packard Children’s Hospital Stanford blog, writer Julie Greicius highlights an elective program at Stanford’s medical school that fosters personal connections between prenatal patients and Stanford medical students. The course is designed to offer doctors-in-training the opportunity, early on, to be on the other side of patient care. Emily Ballenger, who’s expecting twins later this month, and medical student Sunny Kummar have partnered up through the program, with Sunny offering extra support by attending prenatal appointments, the babies’ birth, and the first few pediatric appointments.

Relationship building is fundamental to patient-centered care, and with this program the doctor-to-be has the opportunity to identify with the patient experience in his or her supportive role. Without the pressures of being in the medical provider role, the student has the opportunity to practice listening, empathy and compassion.

The value of programs such as this is that they shift the paradigm of the traditional-doctor patient relationship. The scale is tipped from being purely clinical to one focused more on listening and learning from each other. The patient, the doctor-in-training, and their future patients all stand to benefit.

Ballenger’s obstetrician is Susan Crowe, MD, who has long supported the program. “I encourage my patients to participate because it’s a win for future care of obstetric and pediatric patients,” she says in the piece. “I really believe that the patient-centered care we strive for can be better achieved if we train our physicians to really learn from and listen to our patients themselves. One of the biggest strengths of the program is that the patient perspective comes first. It sets the groundwork for that way of thinking in terms of training our medical students.”

Medical schools around the country offer similar programs, recognizing that it’s the human connection that initially draws young doctors to medicine, and Stanford has offered this program since at least 1991. The course directors are Yasser El Sayed, MD, obstetrician-in-chief at Stanford Children’s Health, and Janelle Aby, MD, clinical associate professor of pediatrics.

Previously: Countdown to clinics: The 5 best things about jumping into third year
Photo courtesy of Lucile Packard Children’s Hospital

Cardiovascular Medicine, Patient Care, Stanford News, Technology, Videos

“Liberated from LVAD support”: One patient’s story

“Liberated from LVAD support”: One patient’s story

One of the first things I noticed about Donna Jackson — 68 years old when I met her in 2011 — was her decisive nature. She had a schedule filled with activity, and regardless of how many people (many of her children, grandchildren, great-grandchildren, in-laws and friends live very near at hand) came to visit in her modest home in Central California, she was a certain force of calm. She was also someone who did not like restrictions on what she could do.

Back then, she was just a few months out from surgery at Stanford Hospital to implant a mechanical pump, a left ventricular assist device or LVAD, on her heart. She knew it had saved her life, but she chafed at the battery, back-up battery and controller she had to wear at all times. Before the surgery, she had been a regular at a water aerobics class, and she loved to swim with her grandchildren. Even in those early months, Jackson was leaning on her Stanford doctors to find a way to get her back in the water. She asked her cardiologist, Dipanjan Banerjee, MD, to consider allowing her to swim in a wetsuit.

Banerjee did her one better. It had become apparent to him that she could be one of that small percentage of LVAD recipients whose heart recovers after the rest that the LVAD gives it and who no longer need the device. (He had been waiting, he said, to find a patient “who can be liberated from LVAD support.”) By Spring 2013, a little less than three years after her LVAD implantation, Banerjee and Jackson’s surgeon, Richard Ha, MD, put Jackson in an even smaller percentage. She became the first person to have her LVAD deactivated by catheter in the most minimally invasive approach yet.

The challenge set by Jackson for her Stanford team — and its groundbreaking procedural response — appears today in the August issue of the Annals of Thoracic Surgery. The lead author of the paper is Sanford Zeigler, MD, a cardiothoracic surgery resident.  Ha, surgical director of the hospital’s Mechanical Circulatory Support Program is the paper’s senior author, and Banerjee, medical director of Mechanical Circulatory Support Program, is a co-author. As they explain in the paper, Jackson, nearing 71,  was a high surgical risk for complete removal of the implant — that would have required them to crack open her ribs again — a procedure that’s followed typically by a long and sometimes painful recovery.  So, her doctors instead threaded a slim plastic tube through a small incision to her femoral artery in the groin and up to her aorta, allowed them to plug the flow of blood to the LVAD. Then, they cut, cleaned and capped the wiring powering the LVAD so it no longer emerged from an opening in her abdomen. (The LVAD remains inside Jackson’s chest.)

The new catheter-based deactivation of the LVAD has value beyond Jackson’s way of life, as the paper explains. She inspired the team to begin research on how to predict which LVAD patients might be like her and reach a point where they no longer need the LVAD. “If we can find out which patients are going to recover sooner, we can be more aggressive with them so they can be liberated from the LVAD,” said Banerjee, “and many of these patients will not want or be able to tolerate a complete removal of the LVAD.”

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Medicine and Literature, Patient Care, Stanford News, Surgery

Surgery: Up close and personal

Surgery: Up close and personal

gholami - smallTens of millions of patients undergo surgery every year in the United States, yet very few have the opportunity to be on the other side and observe a surgical procedure in action.

I had that rare privilege recently in the course of writing a story for Stanford Medicine magazine about surgery and how far the field has come in recent decades. The operating room, I discovered, is a world unto itself. It’s governed by a strict set of rules to help safeguard patients, but within those strictures, there is an elaborate kind of dance and much artistry in the way clinicians work together and finesse the tools to help heal their patients.

Sepideh Gholami, MD, a six-year surgery resident at Stanford who is featured in the story, said it was in part this sense of artistry – the movement, rhythm and pacing – that attracted her to the profession. And like many surgeons, she found it gratifying to be able to use her hands to fix a problem to quickly restore a patient’s well-being. She describes one of her early experiences, assisting in a procedure to remove a life-threatening tumor from a young man’s colon.

“I remember going to the family afterward, saying that we were able to get it all out, and seeing the glow in their faces,” she told me. She said it was reminiscent of the experience of her own mother, who had a tumor extracted from her breast: “This is how it happened for my mom, who is now disease-free,” she said.

In the story, Gholami talks about her rather unusual path from an early childhood in revolutionary Iran to becoming a surgeon in the United States, as well as the changes in the profession that have opened the way  to young women like her. The story also explores the remarkable innovations in technology that have made the patient experience today far less invasive and less painful. Those innovations, as well as new workplace rules that limit trainees’ hours, have dramatically changed the way young surgeons like Gholami are being trained to become the independent, skilled practitioners of the future.

Previously: Stanford Medicine magazine opens up the world of surgery
Photo of Gholami by Max Aguilera-Hellweg

Patient Care, Stanford News, Videos

More on the Navy pilot with mysterious symptoms – and the Stanford doctors who diagnosed him

More on the Navy pilot with mysterious symptoms - and the Stanford doctors who diagnosed him

Last week, we blogged about a Navy pilot whose mysterious symptoms were diagnosed by clinicians here. A just-published Stanford Hospital video shares more of Robert Buchanan’s compelling story.

Previously: Medical mystery solved: Stanford clinicians identify source of Navy pilot’s puzzling symptoms

Health Disparities, Medical Education, Patient Care, SMS Unplugged

In medicine, showing empathy isn’t enough

In medicine, showing empathy isn't enough

SMS (“Stanford Medical School”) Unplugged was recently launched as a forum for students to chronicle their experiences in medical school. The student-penned entries appear on Scope once a week; the entire blog series can be found in the SMS Unplugged category.

SMS_image_072214As a medical student, it’s difficult to face a situation where everything possible is done for a patient, yet due to circumstances (seemingly) beyond our control, the risk of future harm remains uncomfortably certain. The majority of our medical school learning focuses on how to cure illness; unfortunately we’re not always taught how to deal with the real-world issues that face our patients and that threaten the medicine we practice.

This month I’ve been on my neurology rotation at Santa Clara Valley Medical Center, a county hospital with patient demographics quite different from those seen at Stanford Hospital. As I serve a more diverse and disadvantaged socio-economic population, it’s often the case that the information in the patient’s “Social History” section, which I usually quickly pass over, becomes a defining piece in deciding next steps. The 20-something-year-old with daily seizures because he’s so high on methamphetamine that he forgets to take his pills, the 40-year-old with left-sided paralysis who keeps checking in to the emergency department because she feels unsafe living alone in a trailer park, the 60-year-old who didn’t present to the hospital until days after suffering a stroke because he couldn’t physically get to the door to call for help: These patients demonstrate how social situations can make efforts to provide medical care at times seem futile.

In medical school, we’re taught the pathophysiology of disease and systematic approaches to medical management, but not how to deal with social contributors to health. (The latter is a not-so-glamorous aspect of medicine relegated to the hidden curriculum of clerkships.) During pre-clinical years we spend a lot of time discussing how to make empathy a part of our clinical skill-set, but a pitfall to practicing medicine in a way that is sensitive to a patient’s social context is the belief that showing empathy is enough. To express concern for a patient is different from really understanding a patient’s challenges. Things like the fear that drives a patient to repeatedly present to the emergency room for “inappropriate” reasons and the thought process behind not getting an MRI done since it would mean missing work may not fit traditional logic, but they represent an important piece in delivering care.

What can’t be taught in school is an inherent understanding of the difficulties that some patients face, which is why the push for future physicians to be individuals representative of the various backgrounds that patients come from is so important. (It can be surmised that students who have endured these difficulties, themselves or through family, socio-economic or health related, could better relate to patients they come in contact with.) While socio-economic demographics are easily seen on paper, though, what is harder to select for and recruit is the student who has lived the real-world environment characterized by social issues like multiplicity of chronic illness, housing insecurity, and financial hardship. And, of course, many students in this very position never make it to the point of training for a health profession as a result of the very hardships that make them more attune to the social issues that may contribute to poor health.

Medical school recruitment has changed in ways that will hopefully improve diversity of recruited students and contribute to a greater understanding of the background of all sorts of patients among health-care providers. However, more still needs to be done to support students from less-traditional and under-represented backgrounds so they reach the point of applying in the first place. Instead of being discouraged by their less-than-ideal journeys to medical school, students who have endured educational, financial, and social hurdles should be encouraged to use their learned experiences as a frame of reference to positively impact the delivery of health care.

Moises Gallegos is a medical student in between his third and fourth year. He’ll be going into emergency medicine, and he’s interested in public-health topics such as health education, health promotion and global health.

Drawing by Moises Gallegos

In the News, Pain, Patient Care, Research, Stanford News

More attention, funding needed for headache care

More attention, funding needed for headache care

In case you missed it, the San Francisco Chronicle ran a story over the weekend on migraines – and researchers’ ongoing search for a cause and universal treatment. Robert Cowan, MD, director of the Stanford Headache Clinic, was one of the people featured and told writer Stephanie M. Lee:

Headache care is 50 years behind things like diabetes and cancer… It just hasn’t had the attention, hasn’t had the funding, in order to get to the answers we need.

Previously: Director of Stanford Headache Clinic answers your questions on migraines and headache disorders and New Stanford headache clinic taking an interdisciplinary approach to brain pain

Health Disparities, LGBT, Mental Health, Patient Care, Stanford News

Stanford med student discusses his documentary on LGBT vets’ health

Stanford med student discusses his documentary on LGBT vets' health

doublelifeWhen Stanford anesthesiologist Audrey Shafer, MD, welcomed attendees to a screening of “The Camouflage Closet“ on campus recently, she noted the artistic accomplishments and service work of the film’s director, Michael Nedelman. (And also mentioned he was “a Stanford medical student in his spare time.”) Nedelman, who will be entering his third year here, conducted a project with nine LGBT veterans, all patients at the Veterans Affairs Palo Alto Health Care System, exploring their experiences of trauma and recovery.

Nedelman and his collaborators engaged in a community-based participatory method of film-making, allowing participants to tell their stories through art as a path toward empowerment. The participants were provided with cameras to document their stories; they also had a say in the editing process. And while the project was neither officially sanctioned research nor therapy, many of the participants found the process therapeutic. Christine Stout-Holmes said this in the film about sharing her story:

It’s healing. It makes me feel like, “Hey, I don’t have to be agoraphobic.” “Hey, I don’t have to isolate.”

Of course, I feel fists beating me on my back, but I know that that’s not now. And I know that what I’m doing now is going to benefit clinicians, and vets, and hopefully artists, and young girls to know that every story is important.

Since the film’s premiere last June, it has screened at the National Queer Arts Festival, the 31st annual Gay and Lesbian Medical Association conference, and at universities, film festivals and VA hospitals across the U.S. and in Mexico.

Below, Nedelman answers questions about his work.

You have a BA in film studies from Yale. How did you decide to attend med school, and have your interests in art and medicine always intersected?

It took me a while to understand exactly how my interests in art and medicine intersected, but it turned out they had a common ancestor in my love of story.

A few years out of college, I was working at Mount Sinai in New York City on both clinical research and documentary film studies. Whether or not there was a camera in the room, I loved hearing people’s stories, and turning those stories into something meaningful. But in a medical context, I also saw the opportunity to get involved in these stories – to reach past the lens and make a tangible difference.

Combining the two wasn’t really a new concept, though. My first major work in college was a photography project addressing preventable blindness in South India. As with “The Camouflage Closet,” I loaned out cameras to rural vision clinic patients who were able to document their restored sight through images that were important to them. But I had no idea that hyphenating doctor-filmmaker was even an option until I discovered, and later met with, filmmakers like Maren Grainger-Monsen, MD, and Gretchen Berland, MD. Something clicked when I figured out that patient care and digital media could go hand-in-hand.

What are some of the issues faced by this population that you’re most interested in exploring through storytelling?

Some of the issues I found most compelling are not just the unique challenges faced by some individuals (e.g. witch hunts of the pre-DADT – “Don’t Ask, Don’t Tell” – era, increased rates of military sexual trauma, barriers to accessing care), but also the creativity and strength that come from their recovery narratives. Alongside some of the heavier moments in the film, there’s some humor, too. I think I personally learned a lot from the veterans’ resilience, and how their pride – for being LGBT, and for being veterans – factors into their personal growth.

What do you hope viewers will take away from your film?

I hope viewers will come out of the film with a desire to learn more about the unique challenges, types of trauma, and sources of resilience among a previously silenced community. I think there’s a lot to identify with in the film, whether or not you identify as LGBT or a veteran, and there’s a lot to be said for turning empathy into action. This is partly why we also created an accompanying educational resource that summarizes previous research, evidence-based suggestions for culturally relevant care, and resources for clinicians and veterans.

The veterans were excited that clinicians and providers would see and learn from their work. But at the end of the day, I wonder if some of them might have answered this question a little differently. Something we often heard among the vets was, “Even if just one other veteran out there sees this and knows they aren’t alone, we’ve accomplished what we came here to do.”

Previously: Documentary on LGBT veterans’ PTSD, trauma and recovery premieres tomorrow and Photography and storytelling may help poor women with HIV cope with their illness
Film still from “The Camoflauge Closet” courtesy of Michael Nedelman

Patient Care, Pediatrics, Research, Technology

How virtual visits can help children in the hospital reduce stress, speed up recovery

How virtual visits can help children in the hospital reduce stress, speed up recovery

Past research has shown that patients in the hospital experience less nerve-related pain and recover more quickly when they have visitors. Now findings recently published in Pediatrics show that virtual visits are equally beneficial.

In the study, researchers at the University of California, Davis Children’s Hospital analyzed the effectiveness of Family-Link, a program that provides webcams, laptops and Internet access to pediatric patients. Researchers assessed the anxiety levels of roughly 230 children who used the teleconferencing service and 135 who did not when they were admitted to the hospital and discharged using the Parent-Guardian Stress Survey. According to a Futurity post:

Overall, children who used Family-Link felt less stressed compared to those who did not use the program. The effect was even more pronounced for children who lived closer to the hospital and had shorter hospitalizations. This group experienced a 37 percent stress reduction when using Family-Link.

“This study shows that we have another tool to help children during their hospital stays,” says Yang. “The improvement in stress scores shows that Family-Link is really helping many children and might possibly be improving outcomes.”

Previously: Using the iPad to connect ill newborns, parents

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