When Grown-Ups with Congenital Heart Disease Outgrow their Pediatricians
BY SUSAN CONOVA
IT'S ONE OF THE GREATEST SUCCESS STORIES OF MODERN medicine.
Most babies born with complex heart defects 40 years ago rarely survived more than a few years into childhood.
But as surgical techniques improved, many children thrived and grew into adulthood.
Case closed? Not for Marlon Rosenbaum, M.D., one of the few cardiologists in the country who specializes in the unique medical needs of adults with congenital heart disease.
Congenital heart disease patients in their 20s, 30s, and 40s are at a critical time in their lives, says Dr. Rosenbaum, who runs Columbia's Schneeweiss Adult Congenital Heart Disease Center.
"Each operation and each condition has its own natural history, its own set of complications that arise during adulthood," he says.
"It's important that these patients are referred to specialists in adult congenital heart disease so we can address problems as they arise.
I see patients who need heart transplants, but their problems could have been managed with more conventional cardiac surgery if caught years before."
Though still few in number, adult congenital heart disease specialists fill an essential role as children move away from their pediatric cardiologists only to find that most adult cardiologists are not well-trained in their unique issues.
At Columbia, Dr. Rosenbaum has spent almost 20 years developing an approach to the constantly evolving area of adult congenital cardiology in conjunction with a team of specialists at the Schneeweiss Center.
The center is one of a handful in the country and the only one in the metropolitan New York area.
"Over time, we've grown accustomed to the unique cardiac and noncardiac issues in our adult congenital heart patients," Dr. Rosenbaum says.
"I cannot minimize the importance of all of our allied specialists in caring for these patients. We consult with each other to find the optimal treatment for every patient."
The team includes cardiac specialists such as surgeons, electrophysiologists, and interventional cardiologists and outside specialists in radiology, gastroenterology, pulmonary, hematology, and obstetrics and gynecology.
Having such a wide variety of experienced specialists available helps the center treat the adult congenital heart patient's most significant problem: complex arrhythmia.
A large percentage of adults with complex congenital heart disease experience arrhythmia but their management is more complex than the average adult's.
In other patients, it's relatively straightforward to determine the area where the arrhythmia arises and perform radiofrequency ablation on the tissue if necessary.
In congenital cases, Dr. Rosenbaum says, the area where the arrhythmia arises may be difficult to reach, multiple circuits — instead of just one — may be involved, and it is not always possible to successfully ablate the tissue.
In some of these cases, cardiologists, electrophysiologists, and surgeons have teamed up to devise a one-of-a-kind combined interventional and surgical solution to the problem.
Because few cardiologists today receive training in congenital heart disease during their fellowships, they may be unsure when a patient needs to be referred to specialists.
To help, Dr. Rosenbaum and Welton Gersony, M.D., the Alexander S. Nadas Professor of Pediatrics, wrote "Congenital Heart Disease in the Adult," which concisely identifies the issues that arise among adults who have unique cardiac anatomies and who have had surgeries.
What problems will adult congenital patients face as they reach their 50s and 60s?
Dr. Rosenbaum says nobody can be absolutely certain, but an increase in specialists in adult congenital cardiology will be essential to providing the best possible treatment.
"The 750,000 adults with congenital heart disease are defining a whole new specialty," he says.
"With that number constantly growing, these issues will only become more critical."
The Joan and Michael Schneeweiss Adult Congenital Heart Disease Center can be reached at 212-305-6936.
Spine Center Brings Treatment of Back Pain Under One Roof
BY MATTHEW DOUGHERTY
AS ANYONE WHO HAS EVER HAD A NECK OR BACK INJURY KNOWS, getting to the doctor is challenge enough.
But for someone with severe back pain who needs to see specialists at different locations, it's an onerous burden, trekking from office to office, wading through the pain and paperwork.
But Columbia University Medical Center and New York-Presbyterian Hospital have simplified the trek with the opening of the Spine Center in 2003.
The center houses a team of back pain specialists on one floor of the Neurological Institute.
"Our program is designed to ensure that all patients receive optimum, evidence-based surgical or nonsurgical therapies with proven clinical effectiveness," says Paul C.
McCormick, M.D., professor of clinical neurological surgery at P&S and director of the Spine Center.
More than 5 million Americans are temporarily or permanently disabled due to spinal disorders.
As people live longer, that number is expected to grow.
The center focuses on treatment of the most common back injuries and problems including low back and neck pain, disc disorders, spinal stenosis, spinal compression fractures, congenital spinal disorders, spinal tumors, spinal vascular formations, and spinal cord injuries.
A full range of surgical and nonsurgical treatment options, physical therapy, and diagnostic services is offered.
The staff includes P&S faculty experts from neurology, neurosurgery, neuroradiology, orthopedics, rehabilitation medicine (physiatry), anesthesiology/pain management, and physical and occupational therapy.
The specialists collaborate to develop treatment plans that fit the individual patient.
New patients are initially interviewed by the center's nurse triage specialist, enabling efficient decision-making on which type of physician is right for the patient's medical problem.
Many patients are directed to an initial consultation with the center's physiatrist, who focuses on nonsurgical treatment options.
Consultations with a surgeon are arranged for patients whose symptoms suggest surgical options.
Nonsurgical treatments include radiofrequency neuroablation or nerve root deadening, injections of local anesthetics, antiinflammatory medications, and intensive physical therapy.
"About 80 percent of the center's patients will not require surgery," Dr. McCormick says.
An additional nonsurgical option for herniated discs is a relatively new procedure called intradiscal electrothermal therapy (IDET).
This procedure heats the disc and silences the nerve endings.
The Spine Center is one of the few places in the New York tri-state area to offer the treatment.
Herniated discs may respond to nonsurgical interventions, physical therapy, and pain management.
When needed, however, other options such as microsurgery are available.
For spinal stenosis, if physical therapy doesn't provide the needed relief from persistent pain, a decompressive lumbar laminectomy may be recommended to remove portions of the damaged bone, joints, and ligaments that are pressing on nerve roots.
Some patients can benefit from vertebroplasty, a minimally invasive treatment that injects a cement-like material into the vertebrae of a compression fracture, which is typically caused by osteoporosis.
The treatment stops and seals the fracture, reducing or eliminating instability and pain.
The center's interventional neuroradiologists were the first in the tri-state region to offer this therapy.
The center also conducts a number of research studies, led by its biometric and outcomes group.
A patient registry is used to study health-related quality of life measures;
a spinal stenosis outcome study compares surgical vs. nonsurgical interventions;
another study follows compliance with physical therapy;
and a fourth study focuses on causes and prevention of injuries in the elderly.
"The Spine Center is unique in our process of care," says Dr. McCormick.
"Because we are a dedicated team of specialists who focus solely on spinal problems, we achieve success where others fail.
The breadth of our clinical and research capabilities allows us to deliver a quality of care that can truly make a difference in patients' lives."
The Spine Center can be reached at www.nypspine.org or 212-305-9625.
Complementary Medicine Program Helps Children with Cancer
BY SUSAN CONOVA
WHEN A CHILD IS DIAGNOSED WITH CANCER, PARENTS WILL DO anything possible to improve their child's health.
That includes turning to certain complementary therapies.
Columbia's Integrative Therapies Program for Children with Cancer, the first in the nation, strives to ensure that the alternative treatments families may turn to are medically sound.
"When I came here in 1996, parents were asking me about the safety of supplements for their kids, but when I looked into it, I found very little valuable information," says Kara Kelly, M.D., associate professor of clinical pediatrics.
Interested to know how many patients were using supplements or other therapies, Michael Weiner, M.D., director of pediatric oncology, suggested Dr. Kelly interview parents.
"To my surprise we found that 84 percent were using complementary therapies, much higher than I expected.
It showed us there was a real need to find accurate information to help guide patients and their families," she says.
In response, Dr. Kelly founded the integrative therapies program not only to provide accurate information, but also to investigate which alternative therapies work and offer those to patients.
The therapies are not meant to replace surgery and chemotherapy.
Instead, the program utilizes complementary therapies to alleviate many of the physical and emotional effects of standard treatment.
"Our goal is to heal not only our patients' bodies, but also their minds and spirits," says the program's director, Elena Ladas.
"We've found the complementary therapies make such a huge difference in the lives of these children."
Among other techniques, children use yoga to increase energy and reduce stress during chemotherapy;
aromatherapy to reduce the nausea and anxiety that arise during bone marrow transplant procedures;
and acupressure from wristbands that apply slight pressure to the inside of the wrist to reduce nausea.
One 12-year-old patient told Dr. Kelly that the breathing exercises she learned from the program's yoga instructor made her feel better and increased her energy, which was being sapped by the rounds of chemo.
The program is so successful that Dr. Kelly, the program's medical director, and Ms. Ladas are increasingly being sought after for advice by other pediatric oncologists interested in setting up their own integrative therapies programs.
The two also sit on the National Cancer Institute's Complementary and Alternative Medicine Editorial Board, which produces evidence-based, peer-reviewed cancer information summaries for physicians and patients.
The program's Web site (www.integrativetherapiesprogram.org) also is one of only two alternative medicine sites deemed scientifically rigorous enough to be listed as a resource by the National Cancer Institute.
As leaders in the field of alternative therapies for children with cancer, Dr. Kelly and Ms. Ladas are constantly developing new ideas.
"We're curing more and more children with cancer and now we're trying to think of ways to promote wellness in children after they leave our care," Dr. Kelly says.
The program's new chef program, for example, introduces children and their parents to a heart-healthy diet designed to maximize the anticancer properties of phytonutrients.
Once a week, a chef brings in tasty dishes such as black-eyed pea salad or udon noodles in ginger broth.
The eating right philosophy also helps children in the midst of their cancer battle, according to the program's most recent scientific findings.
The report, published in June 2004 in the American Journal of Clinical Nutrition, shows that a greater intake of vitamin C, vitamin E, and beta-carotene reduces a child's side effects from chemotherapy and can result in fewer days spent in the hospital.
What the therapies don't do is make a big dent in the family's pocketbook; all the services are free, supported mostly by private donors.
"There are so many expenses associated with having a child with cancer, even when the standard treatments are covered by insurance or Medicaid," says Dr. Kelly.
"We want to make it available to everyone and we're hoping to raise more funds so we can bring our services, such as yoga and massage, to every patient."
Visit www.integrativetherapiesprogram.org for more information or call 212-305-7835.
Anyone interested in supporting the program through donations should contact Laura Chiappetta in Development at 212-304-7214.