Patient Stories | Mount Sinai Today

Walking Tall After a Paralyzing Car Accident

Oct 22, 2018 | Featured, Patient Stories

Peter Schreiner, walking to the finish line, with Eberardo Burgos, left, and Michael Elliott, both assistant trainers at the James J. Peters VA Medical Center. Click here to watch the Mount Sinai Future You video.

For months, New York City resident Peter Schreiner trained extensively for the New Balance 5th Avenue Mile, determined to win. With friends, family, and new fans cheering him on, he triumphantly crossed the finish line, first among his co-competitors.

But this was no ordinary race: Mr. Schreiner is paralyzed below the chest, and he accomplished this feat in 44:19 minutes—nearly four minutes faster than the goal he had set for himself—with the help of an exoskeleton, a robotic device that enables him to stand and walk. The event, held on Sunday, September 9, marked the first time that an entire heat was dedicated to paralyzed athletes using exoskeletons.

In September 2017, the 27-year-old former scuba instructor from the Upper East Side fractured his T5 vertebra in a car accident that occurred while he was coming home from a friend’s funeral in Florida, sustaining a spinal cord injury (SCI). He had no sensation or motor function below his upper chest, and until he came to The Mount Sinai Hospital five weeks after the injury to begin a comprehensive multidisciplinary SCI rehabilitation program, he was unable to sit up, talk, eat by mouth, or even drink water.

After the race, Peter Schreiner got a congratulatory hug from his mother, Mary Kate Wold.

His treatment involved rehabilitation nursing, physical therapy—including locomotor training with the exoskeleton—occupational, speech, respiratory, and recreation therapy, counseling, nutrition, and community reintegration. “At the time, this seemed so permanent,” recalls Mr. Schreiner.

“It has been amazing to see Peter’s progress,” says Thomas N. Bryce, MD, Professor of Rehabilitation and Human Performance, and Medical Director of Mount Sinai’s Spinal Cord Injury Program. “When he was an inpatient here, we tried to get him up to use the exoskeleton, and it was very slow. He needed a lot of assistance, but very soon he was racing around here very quickly.”

Finishing the race right behind Mr. Schreiner were two other Mount Sinai patients, Richard “Woody” Woods and Robert Woo, and Heather Miner (U.S. Navy Ret.), a patient at the Veterans Administration (VA) Medical Center in Dallas. All four—in T-shirts identifying them as “Team Bionic Athletes”—wore an exoskeleton device placed on their legs, hips, and torso, and weighing 50 pounds, a weight not felt by the user wearing it.

Among its many components, the powered exoskeleton has motors at the hips and knees, a tilt sensor for detecting body position, a computer in the pelvic band to control the motors, and two batteries, all of which are brought together to provide coordinated leg movement into a somewhat natural gait. Arm crutches help users maintain their balance.

“When you’re sitting in a wheelchair, you are literally looking up at the world, and the world is literally looking down at you,” says Angela Riccobono, PhD, Senior Clinical Psychologist, Rehabilitation and Human Performance, who was part of Mr. Schreiner’s care team. “I cannot overstate the significance of being able to stand up and look at someone eye to eye. It is beyond powerful.”

Ann M. Spungen, EdD, Vice Chair of Research for the Department of Rehabilitation and Human Performance at the Icahn School of Medicine at Mount Sinai, is one of the nation’s top exoskeleton researchers for patients with disabilities caused by SCI. Dr. Spungen is also the Associate Director of the VA Rehabilitation Research & Development (RR&D) National Center for the Medical Consequences of Spinal Cord Injury at the James J. Peters VA Medical Center in the Bronx—with which Mount Sinai has an affiliation.

Dr. Spungen has been studying many aspects of SCI, including paralysis, medical complications, mobility, and quality of life for nearly three decades. In addition to lack of mobility, paralysis causes adverse body composition changes, bowel and bladder dysfunction, and cardiovascular problems. Her research has shown that four to six hours per week of exoskeleton-assisted walking leads to improved bowel and bladder function, reduced fat mass, less fatigue, improved sleep and mood, better pain management, and improved overall well-being.

Before the race, Pierre Asselin, MS, Senior Biomedical Engineer, James J. Peters VA Medical Center, and Assistant Clinical Professor, Rehabilitation and Human Performance, Icahn School of Medicine at Mount Sinai, ensured the exoskeleton device was a proper fit for Peter Schreiner.

Mount Sinai’s Abilities Research Center is expanding the outpatient exoskeleton program, focusing on technologies such as neuromodulation, upper extremity robotics, and lower extremity robotics. This initiative will be overseen by Maria del Mar Cortes, MD, Assistant Professor of Rehabilitation and Human Performance, who specializes in robotic technology and noninvasive brain and spinal stimulation techniques to understand the mechanisms of motor dysfunction and improve motor control. Her team will collaborate closely with Dr. Spungen’s program at the VA Medical Center.

Mr. Schreiner recently completed a Department of Defense-sponsored clinical trial at the VA Medical Center in which he participated in exoskeletal-assisted walking three times a week to determine the effects of exoskeletal use in those with SCI. Says Mr. Schreiner: “Mentally, just being on my feet and moving my legs makes me feel whole again.”

For someone who achieved—and surpassed—one early and significant milestone of competing in the race, Mr. Schreiner continues to set new expectations. “I believe I will be doing all the things that I want to do completely independently, and I am very excited about that,” he says. “Even though I have had setbacks, I am not giving up hope.”

Lab Discovery Leads to a Remedy

Oct 8, 2018 | Featured, Patient Stories, Research

Stuart Sealfon, MD

A drug that recently received approval from the U.S. Food and Drug Administration (FDA) for the treatment of pain associated with the gynecological disorder endometriosis had its genesis two decades ago in the laboratory of Stuart Sealfon, MD, at the Icahn School of Medicine at Mount Sinai.

The drug, Orilissa™, approved by the FDA in July, is the first oral regimen that specifically helps to ease the moderate to severe pain that accompanies endometriosis, a condition where the tissue that forms in the lining of the uterus continues to grow outside the uterus.

The disorder, which affects roughly one in ten women of reproductive age, negatively impacts quality of life, since the excess tissue growth is often accompanied by pain during menstruation, intercourse, or urination.

“Orilissa is a drug that resulted from the basic research we conducted at Mount Sinai, and it will help millions of women,” says Dr. Sealfon, Sarah B. and Seth M. Glickenhaus Professor and Chair Emeritus of the Department of Neurology. “At Mount Sinai, we discovered how to clone the drug target that was needed to develop this new drug.”

Indeed, as a young researcher more than two decades ago, Dr. Sealfon led the Mount Sinai team that cloned the gonadotropin-releasing hormone receptor (GnRHR) and genetically engineered host cells that express GnRHR. Gonadotropin-releasing hormone (GnRH), which is secreted by the hypothalamus, plays a key role in controlling reproduction, and acts via its receptor GnRHR.

The cloning procedure and primary structure of the receptor were described in two studies authored by Dr. Sealfon in 1992 and 1993, which were published in Molecular Endocrinology and Molecular and Cellular Endocrinology, respectively. The research provided a better understanding of the complex interplay of hypothalamic, pituitary, and gonadal hormones, which underlie pharmacotherapy and the reproductive system.

At the time, Dr. Sealfon says, a career-development grant provided him with the funding he needed to conduct his research. Two U.S. patents, in 1998 and 1999, assigned these inventions to Mount Sinai.

The oral application of Orilissa—also known by its generic name, elagolix—enables women to dial down the reproductive system. The dose-dependent drug suppresses the luteinizing hormone and the follicle-stimulating hormone, which leads to decreased blood concentrations of estradiol and progesterone. This reduces the growth of excess tissue, or lesions that form on the ovaries, fallopian tubes, or areas near the uterus, including the bowel and bladder that characterize endometriosis and cause pain.

The 20 years it took for elagolix to move from Dr. Sealfon’s laboratory to the marketplace demonstrates the length of time it can take for basic scientific discoveries to bear fruit, experts say. The drug was released by AbbVie, a global pharmaceutical company, in cooperation with Neurocrine Biosciences, Inc.

Endometriosis is considered one of the most common gynecologic disorders in the United States, but women can sometimes go years before having the laparoscopic procedure needed to render a proper diagnosis. In addition to the use of oral contraceptives, treatments have included nonsteroidal anti-inflammatory drugs, and opioids. In more extensive cases, women may undergo surgical procedures, including a hysterectomy.

In two Phase 3 clinical trials, Orilissa has been shown to be helpful in the treatment of uterine fibroids, as well. Fibroids are a common benign tumor that causes bleeding or pain in millions of women, and for which there are, currently, limited nonsurgical treatment options.

In the years since his initial discovery, Dr. Sealfon’s lab has continued to study GnRH receptor-mediated gonadotropin regulation and help guide future work in the field.

Mount Sinai Receives Award from VNSNY CHOICE SelectHealth

Oct 8, 2018 | Featured, Patient Stories

From left: Matthew Baney with Michael Mullen, MD, Director, Institute for Advanced Medicine, Mount Sinai Health System; Thomas Dwyer, Senior Vice President, Visiting Nurse Service of New York; and Edward Lucy, Chief Administrative and Contracting Officer, Mount Sinai Health System.

VNSNY CHOICE SelectHealth, a New York State Department of Health Special Needs Plan for Medicaid-eligible New Yorkers living with HIV, recently awarded the Mount Sinai Health System $360,000 for its efforts at successfully improving the overall health status of its members.

Mount Sinai’s Institute for Advanced Medicine, which directs all of the Mount Sinai Health System’s HIV prevention and treatment programs, serves more than 1,100 HIV-positive VNSNY CHOICE SelectHealth members annually. The award will be used to support Mount Sinai’s quality initiatives that serve this population.

“VNSNY CHOICE SelectHealth shares with our Mount Sinai provider partners the conviction that HIV infection is now a readily treatable condition from which no New Yorker needs to suffer or die,” says Jay Dobkin, MD, Medical Director for VNSNY CHOICE SelectHealth. “We are gratified that our efforts in support of the Mount Sinai program have been so successful, and hope to build even more effective collaborations in the future.”

Matthew Baney, Senior Director of the Institute for Advanced Medicine, says, “We have been successful in starting and maintaining our patients on medications to keep them healthier. All of our sites have initiated outreach efforts and care coordination activities directed at finding patients who fall out of care and getting them back into treatment. We also have a fair amount of patients in the Mount Sinai Health Home Program, which is a free service that integrates and coordinates health care for people on Medicaid—and that has a significant impact on suppression rates.”

Experimental “Brain Glue” Helps Save the Life of a Teen Patient

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).

Saving Lives Citywide With Innovative Stroke Treatment

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.”

Care and Empathy From a Nurse Inspire Former Pediatrics Patient to Become a Physician

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.”

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