There are times when a second opinion is not only appropriate, it's necessary. Nevertheless, more than one in three patients never seek second opinions for their diagnosis, according to a 2006 survey by Harris Interactive. This finding came as a surprise to me: As a neurologist, knowing when it's time to refer a patient to a specialist for a second opinion is part of my job. For you, as a patient, it may be a lifesaver. Here's when you should consider it, and why it matters.
YOU DON'T HAVE CONFIDENCE IN OPINION #1
It's ideal to find a doctor you trust. But if you find yourself questioning your diagnosis, or if you just don't feel comfortable with your first doctor, hearing another physician's opinion may help to settle those doubts. When Todd Bischoff developed a tremor at age 46, a neurologist diagnosed essential tremor and gave him two prescriptions to fill. “He said to let him know if I wanted to take the medications. Then he walked out of the room without explaining what essential tremor was or telling me anything about the drugs,” Todd says. This was the first red flag. Then, when Todd went home and researched the condition, descriptions of Parkinson's disease seemed to fit his symptoms much better. Todd sought a second opinion, and his next neurologist confirmed the diagnosis of young-onset Parkinson's.
YOUR DIAGNOSIS IS UNCLEAR
When patients have complicated symptoms or their diagnosis is unclear, it is often helpful to get a second opinion from a subspecialist. Although neurologists receive an education in a wide variety of conditions, some undergo advanced training in specific areas and go on to specialize in those fields. Todd's second neurologist sent him to a Parkinson's disease specialist because he felt that the early age of onset warranted special consideration. Although he had to pay out of pocket, Todd ultimately received his care from a movement disorder subspecialist because he felt that the doctor's expertise and superior level of skill were worth it. “I'm much more confident in dealing with my condition now and know that if I have questions, my neurologist is available to assist me,” he says.
Gaétan Guertin sought a subspecialist's opinion after his first neurologist suggested the diagnosis of amyotrophic lateral sclerosis (ALS). Guertin began to experience leg fatigue when he was 55 and soon developed foot weakness and muscle atrophy. In an interview with Neurology Now before he passed away on August 31, 2007, Guertin said the expert's approach was more confident. “She had a lot of experience and knowledge and was more open,” the Quebec native explained, noting that because his neurologist worked at a research and training hospital, diagnostic testing was expedited.
YOUR CONDITION IS RARE
Some conditions are encountered so infrequently in general practice that their management is best handled by a neurologist who has had greater experience with those cases. Jeffrey M. Amitin was diagnosed with Parkinson's disease by a surgeon during a follow-up visit one year after gastric bypass surgery. After four months of tests, a neurologist concluded that Jeffrey had central pontine myelinolysis, a condition caused by the destruction of the lining covering nerve cells in part of the brainstem, or pons. Central pontine myelinolysis is a rare complication of surgery—one so uncommon that it was difficult to find a group of specialists who knew how to manage it. But by taking matters into his own hands and doing extensive research, Jeffrey eventually found a team of specialists who were trained in management of his condition. “Now, more than two years after the onset, I have a neurologist, internist, physiatrist, neuro-psychologist, and a pulmonologist, all of whom understand my condition,” he says.
YOUR DOCTOR DISMISSES YOUR CONCERNS
If you are reading this magazine, it means that you are a patient or caregiver who tries to learn as much as you can about your condition. This was also the case for Michelle Farris, who for months had been experiencing head pain that was diagnosed as migraines. When her pain began to occur with every cough and sneeze, her neurologist put her on a drug that caused acute angle-closure glaucoma, requiring surgery. Although Michelle mentioned to the neurologist that the next medication she was prescribed could also cause this condition, her doctor dismissed her concerns.
“At that point I was unwilling to take a chance and asked for a second opinion,” says Michelle. Her new neurologist immediately diagnosed a spinal fluid leak. “I am extremely thankful that I sought a second opinion,” Michelle says, “and believe that it has made all the difference in my care.”
YOU WANT A BETTER EXPLANATION
When Laurie Fournier developed facial numbness, her neurologist ordered a number of tests, including an MRI of the brain and a lumbar puncture. At her next appointment, she was seen by a physician's assistant who gave her a prescription for a drug and a DVD without mentioning the diagnosis of multiple sclerosis (MS)—until Laurie asked. “According to the assistant, the only difference between treatments was the frequency of injection.” Laurie was fortunate to have a family friend who was a neurologist and who took the time to explain treatment options more fully. She eventually transferred her care to an MS Center and is very pleased with her current physician.
Todd, who developed young-onset Parkinson's disease, believes that teamwork is critical for those dealing with a progressive neurodegenerative disease. “This is your health we're talking about—you have to advocate for yourself. If you don't, you could potentially suffer from poor care, or even the wrong care,” says Todd, who now runs a support group (PDTalks.com). “You need to solidify your diagnosis so you know exactly what you're dealing with,” he stresses. “Otherwise, how can you most effectively treat what you have?”
Finding Second Opinions
▸ How to Find a Neurologist for a Second Opinion: Inquire at a nearby academic medical center; ask a number of physicians already involved in your care and compare their recommendations; check with your state medical board, as these agencies license medical doctors, investigate complaints, and discipline those who violate the law (the AMA provides links to each state at ama-assn.org/ama/pub/category/2645.html); and visit The Brain Matters, the American Academy of Neurology patient Web site at thebrainmatters.org—the site has a physician locator and information on your rights as a patient.
▸ Finding an Online Opinion: Expert opinions are not always available locally. When traveling for an expert opinion is simply not possible, using an online consultation service may be a worthwhile option. Ajay Gupta, M.D., a pediatric epilepsy specialist and director of the tuberous sclerosis program at the Cleveland Clinic, has been providing second opinions at cms.eclevelandclinic.org for the past three years. “When patients face a challenging medical condition or tough decisions, online consultation offers them an expert opinion after reviewing the patient's medical data,” he explains. Dr. Gupta, who often answers questions about complex brain surgeries for the treatment of children's seizures from parents who live in remote states or outside the U.S., says, “We often evaluate patients with refractory epilepsy who may benefit from epilepsy surgery, but do not have access to expert evaluation and treatment.” Another online source for second opinions is Partners Online Specialty Consultations (econsults.partners.org). The consultation process draws on the expertise of physicians from a number of different hospitals throughout the country.