Sep 11, 2018 | Featured, Patient Stories, Research
The Mount Sinai team that used an experimental treatment was led by interventional neuroradiologist Alejandro Berenstein, MD, and included Michelle Sorscher, RN, MSN, Clinical Program Manager, Neurosurgery.
When, in early 2017, the teacher of 14-year-old Shawn Svoboda called to say he was falling asleep in class, his mother wasn’t overly concerned, considering it typical teenage behavior.
However, when the teacher called a second time that same day to emphasize she thought this was something out of the ordinary, his mom requested that their pediatrician order a sleep study, as she had noticed subtle changes in Shawn, such as snoring, pulsating neck veins, muffled voice, clumsiness, and headaches, all of which she had chalked up to changes of puberty.
The results showed Shawn was suffering from central sleep apnea at the rate of 150 episodes per hour, and a brain MRI was immediately scheduled at their local hospital in Springfield, Massachusetts. The MRI showed an extensive, potentially lethal, arteriovenous (AV) fistula—an abnormal connection between an artery and a vein—at multiple sites in the brain, creating a complex tangle of blood vessels in the dura, or outer covering of the brain. Shawn was then referred for a genetics consult and a cardiology workup and met with a pediatric neurosurgeon in Connecticut.
After performing a brain angiogram, the neurosurgeon told Shawn’s parents that the condition was more extensive than originally believed and recommended that they take him to The Mount Sinai Hospital, to be seen by Alejandro Berenstein, MD, Professor of Neurosurgery, Radiology, and Pediatrics, at the Icahn School of Medicine at Mount Sinai, and Director of the Pediatric Cerebrovascular Program. Dr. Berenstein is a world-renowned interventional neuroradiologist who has vastly expanded the understanding and treatment of vascular abnormalities in the brain, pioneering the use of innovative substances to incrementally block off these abnormal blood vessels.
Without treatment, Dr. Berenstein says that Shawn was at risk for developing more neurological deficits, seizures, hemorrhage, or stroke. “He was a walking time bomb,” says his mom, Bonnie Kmon, RN, and an oncology certified nurse.
Typically, Dr. Berenstein would treat an AV fistula by injecting a standard medical-grade super glue—a lava-like embolism agent—through a catheter to seal the blood vessel, guided by real-time X-ray imaging.
Shawn’s situation was more complex: the extensive quantity needed would appear black in the X-ray, making it impossible for the surgical team to see what they were doing.
Dr. Berenstein was familiar with a different, liquid embolic super-glue substance being used outside of the United States called PHIL™ (Precipitating Hydrophobic Injectable Liquid), which is less dense and, using iodine, appears grey, instead of black, on an X-ray, making it possible to clearly see the areas being treated.
However, PHIL has not yet been approved by the U.S. Food and Drug Administration (FDA), so Dr. Berenstein and his team successfully petitioned the FDA to grant approval for a single patient compassionate use of PHIL, making Mount Sinai the first institution in the nation to use this agent. Dr. Berenstein was able to block off the abnormal blood vessels a few at a time.
The procedure had to be done in stages to allow the brain and heart to adjust to new blood-flow patterns. It took seven eight-hour procedures, over the course of more than a year, to complete treatment, and Shawn’s road to recovery was not an easy one. He developed blood clots in his brain on two separate occasions, had one grand mal seizure, and now needs to receive twice-daily injections of a blood thinner.
Amazingly, he has suffered no significant neurological deficits, his sleep apnea has completely resolved, he has better balance, is performing wonderfully in school, and no longer suffers from headaches. His genetics workup also showed that he suffers from PTEN Hamartoma Tumor Syndrome, which will require him to have continual yearly monitoring for other medical problems.
“Shawn’s recovery has been extraordinary,” says Dr. Berenstein. “Time will tell, but I expect this to be a permanent fix and I think he’ll continue to do very well.”
Shawn’s mom echoed his assessment, and is grateful, she says, to Dr. Berenstein and his “phenomenal” team of doctors and nurses who cared for Shawn throughout his journey.
Dr. Alejandro Berenstein receives financial compensation as a consultant for MicroVention, the manufacturer of the Precipitating Hydrophobic Injectable Liquid System (PHIL).
Updated on Jun 30, 2022 | Featured, Patient Stories
Patient Dionne Garcia, shown at a follow-up visit six weeks after her stroke, with Johanna T. Fifi, MD, center, and Gal Yaniv, MD, PhD, a second-year neuroendovascular surgery fellow.
On Tuesday, May 1, Dionne Garcia, 72, who was in New York City from Peru visiting her daughter, began experiencing slurred speech and weakness on her left side, and was becoming increasingly unresponsive. EMS arrived at her daughter’s home in Astoria and immediately took her to Mount Sinai Queens, a primary stroke center. Her stroke severity was assessed at 22 on the National Institutes of Health Stroke Scale, indicating severe stroke. Within 15 minutes of her arrival at the hospital, her CT angiogram revealed a blockage of the right middle cerebral artery.
With stroke, each passing minute increases the likelihood of permanent brain damage, and urgent treatment was needed for Ms. Garcia. The Mount Sinai Queens Emergency Department contacted the Mount Sinai Comprehensive Stroke Center at The Mount Sinai Hospital. The Center’s Director, Stanley Tuhrim, MD, Professor and Vice Chair for Clinical Affairs in the Department of Neurology at the Icahn School of Medicine at Mount Sinai, immediately triaged the situation and identified the patient as having an emergent large vessel occlusion stroke (ELVO), one of the most devastating forms of stroke.
Dr. Tuhrim notified The Mount Sinai Hospital endovascular stroke team, led by Johanna T. Fifi, MD, Associate Professor of Neurosurgery, Neurology, and Radiology, and Associate Director of the Cerebrovascular Center for the Mount Sinai Health System. She, along with a neuroendovascular fellow and a radiologic technologist, quickly traveled to Mount Sinai Queens. There, they performed a minimally invasive endovascular thrombectomy to remove the blockage.
Doctors threaded a catheter through Ms. Garcia’s groin up to her brain, and used a combination of aspiration and stent-retriever techniques to completely open the blocked vessel. Within 24 hours of her procedure, Ms. Garcia showed no symptoms of stroke, and she was discharged to her daughter’s home less than a week later.
“Because of the recent advances in technology and the overwhelming evidence for thrombectomy, patients like Ms. Garcia are saved from a life of disability every day,” says Dr. Fifi, who is also Director of the Health System’s Endovascular Stroke Program.
In the past 12 months, the Mount Sinai Health System has performed nearly 200 endovascular thrombectomies, which are now considered the gold standard of stroke care for large-vessel occlusions detected within six hours of onset, and up to 24 hours for a subgroup of patients. The Mount Sinai Cerebrovascular Center has pioneered many of these endovascular techniques and approaches intended to speed up the assessment and treatment of stroke to eliminate or minimize brain damage.
To further address the time sensitivity, Mount Sinai created the innovative mobile interventional stroke team (MIST) approach, in which stroke specialists quickly travel—by taxi or subway—to the patient who has been brought to a Mount Sinai Health System primary stroke center.
The MIST strategy, which aims to minimize risks and the delays inherent in patient transfer, allows for parallel processing of patients who are prepared for the procedure, and in some cases are given the clot-busting drug tPA intravenously, simultaneously as the team is mobilized. In a study led by Dr. Fifi and published in the journal Stroke in December 2017, the MIST model of care had an onsetto-treatment time that was 79 minutes faster than transporting patients from a primary stroke center to a comprehensive stroke center for treatment.
Currently, The Mount Sinai Hospital, Mount Sinai West, and Mount Sinai Beth Israel are thrombectomy-capable. In October 2017, Mount Sinai Queens became the first center in the borough to provide thrombectomy procedures, and construction is ongoing to create, for early 2019, a fully thrombectomy-capable stroke center entirely designed to maximize speed and efficiency in diagnosing and treating all stroke.
J Mocco, MD, MS, Professor and Vice Chair of Neurosurgery, and Director of the Cerebrovascular Center at the Mount Sinai Health System; Dr. Fifi; and stroke team members also continue to advance innovative stroke treatments and technologies.
“The Mount Sinai stroke team has become an international leader in published research aimed at saving more stroke patients’ lives,” says Dr. Mocco. “We are addressing important questions and improving patient care at every stage of ELVO treatment, from initial evaluation, through acute treatment, to rehabilitation.” Among their efforts: they are testing an innovative device that may one day be used by 911 responders to detect and diagnose stroke and other brain disorders in the field; investigating artificial intelligence algorithms to speed up the detection and triage of stroke patients; and leading national trials investigating a number of other new devices for stroke.
“Only a few years ago, many major strokes were fatal, or patients were left with devastating effects. However, with rapidly developing technology and systems of care, Mount Sinai is changing the global conversation about stroke treatments,” says Joshua B. Bederson, MD, Professor and Chair of Neurosurgery at the Mount Sinai Health System. “While other hospitals in New York City focus on stroke diagnosis with ambulances that are outfitted with CT machines, our stroke-treatment team meets the incoming patient upon arrival at one of our Health System locations in Manhattan, Queens, and Brooklyn. Within minutes, the patient is diagnosed, and advanced endovascular treatment restores blood flow to the brain.”
Updated on Jun 30, 2022 | Featured, Patient Stories
When Naysha Lopez, MD, received her medical degree, Evelyn Sotomayor, RN, the Mount Sinai nurse who helped care for her in 2004, was there to celebrate.
When Naysha Lopez graduated from the University of Puerto Rico School of Medicine in June, Evelyn Sotomayor, RN, a pediatric nurse in the intensive care unit (ICU) at Kravis Children’s Hospital at Mount Sinai, was in the audience. It was no surprise that Ms. Sotomayor would travel more than 1,500 miles to be by Naysha’s side—this was another celebratory milestone in a long journey that first brought them together in 2004.
In August of that year, 13-year-old Naysha woke up one morning not feeling well, and by the time she got home from school, her skin and eye tone were yellow, and she had considerable abdominal pain.
Her doctor in Carolina, outside San Juan, Puerto Rico, diagnosed liver failure, and he immediately arranged for a medical plane to take her to The Mount Sinai Hospital, widely renowned as a center for adult and pediatric liver transplants.
Thirteen-year-old Naysha Lopez with Evelyn Sotomayor, RN, at Kravis Children’s Hospital at Mount Sinai.
At Mount Sinai, doctors determined she had Wilson disease, an inherited condition that prevents the liver from filtering excess copper from the body correctly, causing organ damage. They initially feared she had 12 hours to live, and they placed Naysha at the top of the transplant list. A match was found one week later, and, on August 27, Mount Sinai surgeons transplanted the donated liver during a 10-hour surgery.
The family recalls a scary and lonely time. In addition to the stress of a life-threatening illness, they didn’t speak English, were strangers to New York, and had limited financial resources. But good fortune intervened: Ms. Sotomayor, a New Yorker of Puerto Rican descent, immediately took Naysha and her parents under her wing in the ICU, explaining what to expect throughout the illness, reassuring them, and giving them hope. She also showed Naysha’s parents how to use the subway and where to shop for food and clothing.
When Naysha was transferred out of the ICU to another unit, Ms. Sotomayor visited Naysha’s bedside at the end of her shift, braiding her hair while encouraging her to be brave. “Sometimes when you’re sick, all you want is someone to talk to,” Naysha recalls. “Evelyn went above and beyond to show us she cared.” They talked for hours, and envisioned a future beyond the illness. Ms. Sotomayor even suggested that Naysha become a doctor, noting that her experience would give her a unique perspective.
After two months of hospitalization, when Naysha was transferred to the Transplant Living Center to continue her recovery, it was Ms. Sotomayor who brought her there, on her day off, to help her get settled. When Naysha was stronger, Ms. Sotomayor took the family on a Circle Line cruise and brought them to her Long Island home for the weekend.
Naysha Lopez at her high school prom with Evelyn Sotomayor, RN, in 2009.
In December 2004, fully recovered, Naysha and her family returned to Puerto Rico, where they have kept in touch with Ms. Sotomayor, who over the years has attended many of Naysha’s milestones, including her quinceañera—the traditional birthday celebration for Latina girls when they turn 15—and her high school prom and graduation. “She is like family,” says Naysha, who also recalls the excellent care she received from her entire medical team, and social workers who raised donations for the family and brought in a teacher to help with her schoolwork.
In July, as Naysha—now Dr. Lopez—begins her residency in Emergency Medicine in Carolina, she continues to be inspired by her own experience at Mount Sinai, and, most significantly, by Ms. Sotomayor. “She showed me how rewarding it is to take care of people. Because of Evelyn, I trust nurses and have tremendous respect for the role they play in healing their patients.”
Adds Ms. Sotomayor, “I feel blessed that they have been in my life. I feel good when I can help people and give them hope. That’s the best feeling of all.”
Jun 26, 2018 | Featured, Patient Stories, Research
Speaker Trisha Meili discussed coming to terms with brain injury.
The Friedman Brain Institute (FBI) in May cosponsored a program with the Brain Injury Research Center of Mount Sinai and the Department of Rehabilitation Medicine that focused attention on the little-known and -discussed incidence of traumatic brain injury (TBI) and chronic traumatic encephalopathy (CTE) in women. CTE is a neurotrauma-associated neurodegenerative condition that is most often found in males who are professional athletes and soldiers.
The program, held in Goldwurm Auditorium and hosted in conjunction with the nonprofit organization Pink Concussions, addressed the lack of research on CTE in women and highlighted its prevalence among females who sustain head trauma each year as a result of sports injuries, accidents, domestic violence, or military duty.
In his opening remarks, Eric Nestler, MD, PhD, Nash Family Professor of Neuroscience, Director of The Friedman Brain Institute, and Dean for Academic and Scientific Affairs, Icahn School of Medicine at Mount Sinai, said, “We know that lack of knowledge and an inability to treat brain injury in women and girls is a major gap in the medical profession.”
Pink Concussions founder Katherine Price Snedaker, LCSW, said she began researching the subject of brain injury when one of her sons sustained five concussions from playing sports. After hearing from the mothers of daughters who were also repeatedly experiencing them, she created a support group, which ultimately led to the establishment of Pink Concussions in 2013.
Dara Dickstein, PhD, an Adjunct Assistant Professor in the Department of Neuroscience at the Icahn School of Medicine and a co-organizer of the event, presented research she is conducting that involves neuroimaging and the use of biomarkers to aid in the diagnosis of CTE during life. Currently, the only way CTE can be definitely diagnosed is through postmortem brain analysis at autopsy. Dr. Dickstein is studying the potential efficacy of an experimental radioactive tracer that binds to tau (proteins that build up in the brains of CTE sufferers) and shows up on PET scans, to help diagnose the condition during life.
At the Mount Sinai event, Yelena Goldin, PhD, Staff Neuropsychologist at Hackensack Meridian Health in Edison, N.J., explained that after reviewing thousands of studies on outcomes of traumatic brain injury, her team could find only 54 that factored sex and gender into their analyses. Additionally, Dr. Goldin said, there was no follow-up medical literature on female athletes in high school and college six months after they had recovered and were medically cleared to return to their sports.
One of the program’s speakers, a woman who experienced injuries to her head as a result of domestic violence, said the lack of medical or scientific research left her confused about her subsequent health problems, including menstrual issues, forgetfulness, depression, and anxiety. “At the time,” she said, “the only advice I got was that I would probably get some migraines.”
Kristen Dams-O’Connor, PhD, Director of the Brain Injury Research Center at the Mount Sinai Health System and a co-organizer of the event, said recent studies from her group have not revealed any connection between traumatic brain injury and Alzheimer’s disease, although they did find damage to small blood vessels and the presence of Lewy bodies—abnormal deposits of protein, which are implicated in Parkinson’s disease.
Plenary speaker Trisha Meili said the lack of a definitive link between TBI and Alzheimer’s was welcome news to her. In April 1989, Ms. Meili, a young investment banker, survived a brutal attack while jogging in Central Park. The attack—which included a life-threatening blow to her head—made headlines around the world.
During the program, Ms. Meili discussed her recovery and her life today. “Mentally, I will never be the same as I was before the brain injury,” she said. “Acknowledging this to myself, needless to say, is not a great feeling. But in another way, it gives me peace. I can live with it. I accept it. It’s a giant step in my healing.”
May 22, 2018 | Featured, Patient Stories
Jonathan Ripp, MD, MPH
The Icahn School of Medicine at Mount Sinai has named Jonathan Ripp, MD, MPH, as Senior Associate Dean for Well-Being and Resilience, and Chief Wellness Officer. Dr. Ripp assumes the new post amid mounting challenges for medical professionals that include exhaustive clerical demands, increasingly burdensome documentation procedures, and numerous metric-driven requirements. Stressors such as these distract providers from the meaningful aspects of their jobs and make it harder for physicians to provide patients with the best possible care.
According to a December 2016 article in the Annals of Internal Medicine, physicians spent 27 percent of their total time on direct clinical face time with patients and 49.2 percent of their time filling out electronic health records and doing other administrative work. The study found they spent another 1 to 2 hours each night—after office hours—doing additional computer or clerical work.
“Our physicians and clinicians care for patients and families in need in an evolving health care system,” says Dr. Ripp. “They are driven in this pursuit to put the patient first, but often their own well-being suffers. We need to support their mission by improving the system-level factors that facilitate their purpose and provide them with the resources to promote well-being.”
Dr. Ripp has assumed a national leadership role in this endeavor. In April, he and colleagues from the Mayo Clinic and University of California San Francisco School of Medicine published a widely circulated “Charter on Physician Wellbeing” that appeared in the Journal of the American Medical Association.
David O. Barbe, MD, MHA, President of the American Medical Association (AMA), wrote, “Achieving national health goals depends on an energized, engaged, and resilient physician workforce. The AMA strongly supports the Charter and its declaration that the nation is best served by a health system that promotes professional fulfillment by allowing physicians to meet their patients’ needs for high-quality care.”
In his new role at Mount Sinai, Dr. Ripp will identify areas of excessive administrative and clinical burden that can be targets for intervention and workplace redesign efforts. He will also lead new initiatives that optimize physical and mental health.
“My role is to understand the local drivers of job burnout and to solve difficult problems,” he says. Initial initiatives will engage focus groups of faculty, students, and trainees and include gathering survey data on the drivers that erode well-being. He plans to identify a cohort of department-level faculty wellness champions who are eager to partner in implementing change.
Dr. Ripp—a faculty member in the Department of Medicine since 2004—has overseen the development of numerous wellness initiatives in Graduate Medical Education (GME) for the past two years. These include the expansion of mindfulness and reflection programs, codification of a policy that meets accreditation for well-being requirements, and the establishment of a GME-funded well-being grant program to decrease trainee work intensity and administrative burden. In addition to this work, he provides primary care to homebound New Yorkers through the Mount Sinai Visiting Doctors Program.
As Dr. Ripp pursues new programs within the Icahn School of Medicine and the Mount Sinai Health System, he also will continue his work on a national level. Over the course of their careers, physicians can expect to encounter patients who are dealing with extreme pain and suffering. Incorporating resilience-building strategies into medical training and education can provide physicians with the emotional awareness and support they need during these stressful encounters.
The development of clinician well-being initiatives will take a large effort, says Dr. Ripp, but the rewards for the nation’s doctors and patients are potentially huge.
May 8, 2018 | Featured, Patient Stories, Research
“When a young person is traumatized, it sets the stage for a life that is more difficult.” Dennis S. Charney, MD
“Is anything more important than ending violence against children and adolescents?”
That rhetorical question was posed by Dennis S. Charney, MD, Anne and Joel Ehrenkranz Dean, Icahn School of Medicine at Mount Sinai, and President for Academic Affairs, Mount Sinai Health System, in his opening remarks at a recent conference sponsored by the Mount Sinai Adolescent Health Center and the World Childhood Foundation USA. “When a young person is traumatized,” said Dr. Charney, a renowned expert in the neurobiology and treatment of mood and anxiety disorders, “it sets the stage for a life that is more difficult.”
The conference, “Ending Violence Against Children: Developing a Roadmap to a Healthy Childhood and Adolescence,” was held Thursday, March 22, and Friday, March 23, in Stern Auditorium, and kicked off the 50th anniversary of the Mount Sinai Adolescent Health Center, a unique New York City-based program that delivers comprehensive medical and mental health services and prevention education to people ages 10 to 22.
More than 70 percent of the young people who come to the Adolescent Health Center have a history of trauma, according to conference co-director Angela Diaz, MD, PhD, MPH, Director of the Mount Sinai Adolescent Health Center and the Jean C. and James W. Crystal Professor of Pediatrics, and Professor of Environmental Medicine and Public Health, Icahn School of Medicine at Mount Sinai.
“Young people are our present and our future,” said Dr. Diaz. “Together, we can create a model for ending violence against children.”
Sixty experts served on panel discussions that included research into the long-term consequences of early childhood abuse and neglect, the economic impact of violence in childhood, and ways to safeguard the mental health of children and adolescents. Panel participants covered topics such as abuse prevention, support for survivors, the role of the justice system, and ways to find innovative solutions.
David Finkelhor, PhD
Rachel Lloyd, Founder and President of Girls Educational and Mentoring Service (GEMS), participated in a panel discussion on helping victims of sexual trafficking. “Poverty is the baseline for almost every child who ends up being sexually trafficked,” she said. “Sexual trafficking is a matter of demand and supply, but it’s driven by sexual abuse at home, poverty, domestic violence, and running away from Child Protective Services.”
The audience was comprised of hundreds of clinicians, researchers, policymakers, philanthropists, and youth advocates, who came together to identify solutions to defend children’s rights and promote better living conditions for children. Joanna Rubinstein, DDS, PhD, President and Chief Executive Officer, World Childhood Foundation USA, also served as co-director of the conference.
David Finkelhor, PhD, Director, Crimes against Children Research Center, University of New Hampshire, delivered the conference’s keynote address, and proposed the creation of a common field of study to examine the full scope of violence against children, including bullying and peer victimization, as well as abuse by adults and how the risk of violence changes over the course of development.
“Children suffer five times more violence than adults,” he said. “Why are they so vulnerable? They are small, dependent, inexperienced. Kids don’t choose their families, schools, or neighborhoods.”
Dr. Diaz and Dr. Rubinstein concluded the conference with a call to action that would include addressing barriers to identifying victims and integrating a “trauma-informed” approach into programs that interact with children and youth. “This is the beginning of a movement,” Dr. Diaz said.
Angela Diaz, MD, PhD, MPH
