Saturday, February 12, 2011

Lives - The Husband’s Speech -

When I crossed the threshold into my husband's hospital room, I entered a world that was unfamiliar, with an unfamiliar man lying in it. He suffered a massive stroke only days before, one tailor-made to his own private hell. In the cruelest of twists for a novelist-professor obsessed with words, the stroke ravaged the language areas of his brain.

Although the man looked like Paul, my partner of 35 years, he wore a distorted scowl and seemed to unhinge his whole body in a vain attempt to speak, reeling upright, flexing his shoulders at odd angles and flailing his arms against the bed. Then he switched to just a facial tantrum — cheeks, eyelashes, jowls and nose writhing as he desperately fought to get something across. His mouth slouched to the right, his lip curled and for a moment all I could see was a glint of drool at the corner of his mouth.

"Hi, honey," I said, trying to rally a small smile from somewhere in the coal pits of my belly.

Paul stared at me, his eyes declaring: What on earth are you driving at?

Then he fidgeted about as if trying to muster all the aggregate parts of his being, but finding only a blurred view of what once moved in unison, he spluttered: "Mem." When I didn't respond, he brought down his fist on the bed railing, repeating it in loud italics: "Mem, mem, mem!"

"Easy now, easy, quiet down, it's O.K.," I said in what I hoped was a calming tone. But his flare-up shook me so much that I had trouble steadying my voice.

Paul would tell me later that he felt different from before, newly embedded in himself, as if trapped in statuary. His room seemed to be full of Hopi dancers and dazzling as Mardi Gras. He felt his teeth blink. Something pagan was going on, with a mad ring to it, like a disturbed vibraphone. People were speaking a foreign language. And they didn't seem aware of the pandemonium and cacophony he was enduring. Alice-in-Wonderland sensory warping is common after a stroke, as the damaged brain struggles to make sense of its surroundings.

When I tried to wrap an arm around him, he threw it off. "How are you?" I persisted.

He struggled to respond, then he spat a little sound — whgggggggg — as if he were blowing at a candle, followed by a parade of s's. On he wrestled, and the more words eluded him, the more frustrated he became, until his temper boiled and his jaw opened and closed in silent damnation. At last, he glared at me. Suddenly he clenched his fists and thrashed his arms as he shouted, "MEM-MEM-MEM-MEM-MEM!"

I flinched, and seeing that he'd scared me, he quieted down.

"I wish I could understand you," I said, more to myself than to Paul. And then I repeated, "How are you?" not meaning anything by the question except I'm here, I'm sharing your suffering, I wish I could help you.

Paul looked at me with controlled exasperation. All that came back from him was a croak, a silent cough and "MEM" barked seven times and finally murmured, like the last word from a dying man, as if this syllable alone formed the basis of some life to come.

Paul fell quiet. But the rest of our new habitat was noisy. Remote voices grew louder as they approached our room, striking a distinct sentence or two as they passed — "Wouldn't you think?" "I dunno" — before dwindling to sound scraps again. Low-heeled shoes shuffled past. Unseen trays and trolleys clanked through the hallway. Inside the room, purring machines and syncopated pings broke through that barely audible background stir we perceive as silence.

In time Paul left the hospital for what has been a six-year odyssey of relearning language on his part and caregiving on mine. Thanks to will and hard work, the brain's gift for plasticity and our homemade speech therapy, he's talking and writing again. Not perfectly; his days are still riddled with aphasia. Life is different, but sweet, often devolving into hilarious charades as he tries to pin a word down, like a lepidopterist with a handful of oysters. So there are many frustrations, but once again a shared revelry with words. And Paul seems altogether happier than before, living more in the moment, grateful to be alive.

We often remember with a shiver those early days in the hospital, when life felt small as a noose, and I thought it was the end of our long love story. I discovered instead that it was only the beginning of a new chapter.

Diane Ackerman is the author of "One Hundred Names for Love: A Stroke, a Marriage and the Language of Healing," to be published in April. This essay is adapted from the book.

Thursday, February 10, 2011

Are Doctors Too Quick to Cut? - Room for Debate -

new study has found that removing cancerous lymph nodes in about 20 percent of breast cancer patients does not improve survival or prevent cancer recurrence. The surgery was unnecessary because the women in the study, all with early breast cancer, had chemotherapy and radiation, which probably wiped out any disease in the nodes. Yet for many decades the painful procedure, which can cause debilitating complications, has been standard treatment. The new evidence is expected to alter that approach drastically. (By contrast, surgery is becoming more effective in some fields, like prenatal treatment of spina bifida.)

What does the breast cancer news say about the way we look at surgery as routine treatment? Does the American medical culture rely too much on cutting out the problem? Is that changing?

Fetal Surgery Improves Spina Bifida Outcomes, Study Says -

For years, surgeons have been trying to find ways of operating on babies in the womb, reasoning that medical abnormalities might be more easily fixed while a fetus is still developing. But with tremendous risks to babies and mothers, and a mixed record of success, fetal surgery is mostly used when babies are likely to die otherwise.

Now, for the first time, a rigorous clinical trial shows that fetal surgery can help babies with a condition that is not usually life-threatening. Babies with a form of spina bifida, a debilitating spinal abnormality, were more likely to walk and experience fewer neurological problems if operated on before being born rather than afterward.

The $22.5 million study, long awaited by experts and published online Wednesday in The New England Journal of Medicine, is likely to galvanize interest in trying to address problems before birth, including operating on serious heart defects and bladder blockages, and potentially using fetal bone marrow or stem cell transplants for sickle cell anemia and immune disorders.

"It's a good start, a step in the right direction," said Dr. Joe Leigh Simpson, an obstetrician and geneticist at Florida International University, who wrote an editorial that accompanied the research. "It showed improvement and that there's reason to continue looking for a better mousetrap."

Still, he said, "the improvement that was hoped for, the home run or the holy grail" of eliminating all major problems "obviously did not occur."

And as technology increasingly allows doctors to diagnose problems in a developing fetus, the study underscores remaining risks and hurdles, including developing less-invasive techniques to avoid creating other problems for babies or mothers.

The spina bifida procedure was considered beneficial enough that an independent safety monitoring board stopped the study early so babies scheduled to receive surgery after birth could have access to prenatal surgery.

But there were medical downsides for the women and infants: greater likelihood of being born several weeks earlier than the postnatal group, related breathing problems, and thinning or tearing at women's surgical incisions, requiring Caesarean sections for later births.

"While this is a very promising and quite exciting result," said a study author, Dr. Diana Farmer, surgeon in chief at the Benioff Children's Hospital at the University of California, San Francisco, "not all the patients were helped here, and there are significant risks. This procedure is not for everyone."

Conducting the study was itself challenging. Prenatal spina bifida surgery gained attention in the late 1990s when some medical centers, like Vanderbilt University, began performing it. A photograph in which a fetus's hand appeared to be gripping the finger of a surgeon who had lifted the hand out of the womb was circulated by opponents of abortion rights, further raising the profile.

Leading experts suggested a clinical trial to determine if prenatal surgery was better than postnatal. They insisted on an unusual agreement: that all but three hospitals, in Philadelphia, San Francisco and Nashville, stop doing the procedure.

"There were lots of places that wanted to do it" amid pressure from eager patients, said Dr. Michael Harrison, who pioneered fetal surgery at the University of California, San Francisco, and was a principal investigator for the spina bifida trial before retiring. "But we wanted to make sure it wouldn't become a freak show. And if you offer treatment outside the trial, you'll never have a trial because no mother would agree to flip a coin."

Ultimately the other hospitals acceded.

One reason spina bifida researchers wanted a trial was the experience with prenatal surgery for a condition in which the diaphragm has life-threatening abnormalities.

After early efforts to repair the condition prenatally, "we thought we were heroes," Dr. Harrison said, but realized it worked only for milder cases. Another prenatal approach, forcing the lungs to grow, worked, but caused significantly premature births, making it no better than postnatal treatment, he said. He added that prenatal techniques had improved, becoming less harmful.

The spina bifida study involved the most severe form, myelomeningocele (MY-ell-oh-men-NING-guh-seal), in which the spine does not close properly and the spinal cord protrudes. Children may experience lower-body paralysis, fluid on the brain, bladder problems and learning disabilities. About one in 3,000 children have that form, said Dr. Alan Guttmacher, director of the National Institute of Child Health and Human Development, which financed and helped conduct the study.

Many babies now receive surgery to close the spinal opening after birth, but nerve damage from the spinal cord exposure to amniotic fluid remains. Also, the brainstem may be pulled into the spinal column. Excess fluid in the brain may require draining with implanted shunts, which can lead to infection or need repeated surgical replacement.

In the study, about 80 babies were randomly selected for surgery after birth; another 80 had the spinal opening surgically closed in utero, between 19 and 26 weeks of pregnancy. Two in each group died.

Before surgery, babies in the prenatal group had more severe spinal lesions than the postnatal group, but more in the prenatal group had better results, said a co-author, Dr. Scott Adzick, chief of pediatric surgery at Children's Hospital of Philadelphia.

Those who received prenatal surgery were half as likely to have a shunt, and eight times as likely to have a normally positioned brainstem. There was "much better motor function of the legs," Dr. Adzick said, and at 30 months old, nearly twice as many walked without crutches or orthotics.

Although they were born at 34 weeks of pregnancy on average, compared with 37 weeks for the postnatal group, there was no difference in cognitive development, said Dr. Catherine Spong, chief of pregnancy and perinatology at the child health institute.

Dr. Adzick said prenatal surgery may "stop exposure of the developing spinal cord and perhaps avert further neurological damage" or stop the leak of spinal fluid that causes brainstem problems.

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American Medical Device Makers Look Overseas for Quicker Approval -

Late last year, Biosensors International, a medical device company, shut down its operation in Southern California, which had once housed 90 people, including the company's top executives and researchers.

The reason, executives say, was that it would take too long to get its new cardiac stent approved by the Food and Drug Administration.

"It's available all over the world, including Mexico and Canada, but not in the United States," said the chief executive, Jeffrey B. Jump, an American who runs the company from Switzerland. "We decided, let's spend our money in China, Brazil, India, Europe."

Medical device industry executives and investors are complaining vociferously these days that the industry's competitive edge in the United States and overseas is being jeopardized by a heightened regulatory scrutiny.

The F.D.A., they and others say, appears to be reacting to criticism that its approvals for some products had been lax, leading to a spate of recalls of some unsafe medical devices, like implanted defibrillators and hip replacements.

Now, executives of device companies say the F.D.A. has gone too far in flexing its regulatory muscle, and they worry that a slower, tougher approval process in a weakened economy could chill investments and cripple innovation.

In addition, they say that American patients are being deprived of the latest technology because companies routinely seek approval for new devices in Europe first. For instance, heart valves that can be installed through a catheter instead of open-heart surgery have been available in Europe since 2007 but will not be available in the United States until late this year at the earliest.

"Ten years from now, we'll all get on planes and fly somewhere to get treated," said Jonathan MacQuitty, a Silicon Valley venture capitalist with Abingworth Management.

Marti Conger, a business consultant in Benicia, Calif., already has. She went to England in October 2009 to get an implant of a new artificial disk for her spine developed by Spinal Kinetics of Sunnyvale, Calif.

"Sunnyvale is 40 miles south of my house," said Ms. Conger, who has become an advocate for faster device approvals in the United States. "I had to go to England to get my surgery."

Stenum Spine Hospital in Germany has performed disk surgery on 1,000 Americans over the last eight years, said Jim Rider, the hospital's American marketing agent.

Acknowledging industry concerns, the F.D.A. on Tuesday proposed creating an "innovation pathway" aimed at speeding regulatory reviews of a small number of groundbreaking devices. And last month the agency announced measures it said would make the regulatory process more predictable for the vast majority of devices.

"A consistent and predictable review process will stimulate investment here at home and keep jobs from going overseas," Dr. Jeffery Shuren, the director of the agency's medical device division, told reporters.

But Dr. Shuren said the F.D.A. would not relax its standards, arguing that Europe's system might be too lax. He said that a breast implant, a lung sealant and an implant for elbow fractures were approved in Europe but not in the United States, and then had to be taken off the market in Europe for safety reasons.

"We don't use our people as guinea pigs in the U.S.," he said

Medical device executives said they welcomed the steps, but continued to express concerns. Consumer advocates, like Dr. Sidney Wolfe of Public Citizen, however, said that device regulation was already much less stringent than for drugs and that the F.D.A. was caving in to industry demands rather than ensuring consumer safety.

Dr. Charles Rosen, a spine surgeon who is also president of the Association for Medical Ethics, said that the newest devices were not always best. He said he had at least 50 patients who had suffered serious problems from an older artificial disk. Many of those patients, he said, had gone to Europe to get them before they were available in the United States.

Just since November, three reports — two sponsored by device industry trade groups and one conducted by the consulting firm PricewaterhouseCoopers — have raised concerns about the F.D.A. approval process. One report found that the rate of recalls in Europe was similar to that in the United States, suggesting faster approvals overseas were not hurting patients.

The complaints are driven in part by financial pressures. Venture capitalists, because of the financial crisis and their own poor returns, have less money and need quicker returns on their investments from the companies they back.

Bigger device companies also complain about the F.D.A., but not as much as struggling start-ups. "The F.D.A. is asking for larger trials, more thoughtful trials, all in the interest of the American public," said Dr. Stephen N. Oesterle, senior vice president for medicine and technology at Medtronic.

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Tuesday, February 8, 2011

Parents Turn to iPad for Speech Therapy -

The rise of mainstream tablet computers is proving to have unforeseen benefits for children with speech and communication problems—and such use has the potential to disrupt a business where specialized devices can cost thousands of dollars.

Before she got an iPad at age two, Caleigh Gray couldn't respond to yes-or-no questions. Now Caleigh, who has been diagnosed with cerebral palsy, uses a $190 software application that speaks the words associated with pictures she touches on Apple Inc.'s device.

"We're not having to fight to prove to people that she is a smart little girl anymore, because it's there once they see her using the iPad," said Caleigh's mother, Holly Gray, who said her daughter can use the tablet to identify colors or ask to go outside.

The software, called Proloquo2Go by a company called AssistiveWare BV, is one of a growing number of apps aimed at people with speech difficulties developed for Apple's gadgets. Some of the apps offer images that users can press to make the sound of a word; others lead students through stories to teach them basic speech patterns.

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Sharecare - Expert answers for your healthstyle

Sharecare is designed to greatly simplify the search for quality healthcare information and provide consumers with the necessary tools to make smart health choices and live healthier lives. Our mission is to answer the worldís questions of health and achieve a collective wisdom by developing a comprehensive database of all of the questions of health and wellness and actively recruiting industry experts to answer them. Leading physicians, nurses, hospitals, clinics, authors, healthcare companies and non-profits connect, interact and share their collective expertise encouraging consumers to ask, learn and act upon questions of health.

Sunday, February 6, 2011

Online Medical Advice Can Be a Prescription for Fear -

If you're looking for the name of a new pill to "ask your doctor about," as the ads say, the Mayo Clinic Health Information site is not the place for you. If you're shopping for a newly branded disorder that might account for your general feeling of unease, Mayo is not for you either. But if you want workaday, can-do health information in a nonprofit environment, plug your symptoms into Mayo's Symptom Checker. What you'll get is: No hysteria. No drug peddling. Good medicine. Good ideas.

This is very, very rare on the medical Web, which is dominated by an enormous and powerful site whose name — oh, what the hay, it'sWebMD — has become a panicky byword among laysurfers for "hypochondria time suck." In more whistle-blowing quarters, WebMD is synonymous with Big Pharma Shilling. A February 2010 investigation into WebMD's relationship with drug maker Eli Lilly by Senator Chuck Grassley of Iowa confirmed the suspicions of longtime WebMD users. With the site's (admitted) connections to pharmaceutical and other companies, WebMD has become permeated with pseudomedicine and subtle misinformation.

Because of the way WebMD frames health information commercially, using the meretricious voice of a pharmaceutical rep, I now recommend that anyone except advertising executives whose job entails monitoring product placement actually blockWebMD. It's not only a waste of time, but it's also a disorder in and of itself — one that preys on the fear and vulnerability of its users to sell them half-truths and, eventually, pills.

But if careering around the Web doing symptom searches is your bag (and, come on, we've all been there), there's still Where WebMD is a corporation that started as an ad-supported health-alarmism site with revenues of $504 million in 2010, the Mayo Clinic is a nonprofit medical-practice-and-research group that started as a clinic. Mayo's storied past as the country's premier research hospital, in Rochester, Minn., and its storied present as one of Fortune's "100 Best Companies to Work For" surface in the integrity of the site itself, which — though not ad-free — is spare and neatly organized, with the measured, learned voice of the best doctors. The byline for most entries is "Mayo Clinic staff." The integrity of the whole institution is on the line with this site, and the Mayo Clinic has every motivation to keep its information authoritative and up to date.

Contrast this with WebMD, which — with every reason to amp up page views, impress advertisers and drive traffic to commercial sites — has the junky, attic-y look of your standard ad-chocked Web site. Amid so-called information about cancer and depression are banner ads for brands like Crest, L'Oreal, Bounce and Clorox.

Health sites are hugely influential in how Americans think about their health and may even play a part in public debates over health care, as they aggressively shape how would-be patients consume medical information and envision treatment. Consider the humanheadache. If you plug "headache" and "Mayo Clinic" into Google, you get directed to information about the "tension headache." The first page is absent photos and hype. Instead you read: "A tension headache is generally a diffuse, mild to moderate pain. . . . Managing a tension headache is often a balance between fostering healthy habits, finding effective nondrug treatments and using medications appropriately." Sounds right.

By contrast, if you plug "headache" and "WebMD" into Google, the Web opens to the glamorous, photo-dominated "Migraines and Headaches Health Center," a sound-and-light show that seems itself like a headache trigger. There's the requisite picture of a tastefully made-up young woman holding her head in exquisite agony. The headache "news," flush right on the page, comes with more artful photos of lovely people in pain and includes scare headlines like "Headaches: When Is It an Emergency?" The first page contains no hard facts — you have to click and thereby drive up the site's lucrative click-throughs — but instead quickly transforms visitors from Web users with headaches to hard-core migraineurs and drug consumers. According to WebMD: "Migraines and other types of headache — like tension headache and sinus headache — are painful and can rob you of quality of life. Migraine symptoms include a pounding headache, nausea, vomitingand light sensitivityHeadache remedies include various types of pain relievers. Migraine treatments may also include antinausea drugs and medications to prevent or stop headaches."

On the Mayo Clinic's site, no specific drugs are mentioned for garden-variety headaches until Page 8, when over-the-counter analgesics are mentioned. This came well after I read a fantastic how-to called "Preparing for My Appointment" — a guide that Mayo includes with every entry. This edition encouraged me to ask about headache types and about alternative therapies and generic medications. Mostly it just didn't rush me to hysteria, or to drugs. I marveled again at the mellow design of the site and at how Mayo manages to stay reliable in the world of infotainment that is the commercial Web. I admired the site for a minute more, and my headache dissipated.

More Than 70 Members of Congress Demand Cognitive Treatment for Troops With Traumatic Brain Injuries - ProPublica

A bipartisan group of 74 lawmakers issued aletter Friday demanding that the Pentagon's health plan cover a treatment for brain-injured soldiers known as cognitive rehabilitation therapy.

Rep. Bill Pascrell, D-N.J., and Rep. Todd Platts, R-Pa., the leaders of the Congressional Brain Injury Task Force, cited an investigation by ProPublica and NPR revealing that Tricare, an insurance-style plan covering soldiers and many veterans, had relied on a controversial study to avoid paying for the intensive and often expensive treatment.

"We hope that you share our concern that service members returning from the battlefield cannot wait to receive treatment for their injuries," the letter states. "It is our hope that there exists some contingency plan to provide cognitive rehabilitation for service members who are returning home today."

Official Pentagon figures show that nearly 200,000 troops have suffered traumatic brain injuries since 2001, though our investigation found evidence suggesting the true toll is far higher. Although the majority of soldiers recover from the most common form of head trauma, known as mild traumatic brain injury or concussion, some suffer lifelong mental difficulties, with trouble remembering words or following directions.

Pascrell and Platts first wrote a letter, also signed by scores of lawmakers, demanding that Tricare provide cognitive rehabilitation more than two years ago. In response, Tricare contracted a study that found insufficient evidence to justify providing the treatment.

In confidential reviews obtained by ProPublica and NPR, however, leading brain specialists blasted the study for ignoring evidence that the therapy helped, calling the study "deeply flawed." Top Pentagon health officials have also expressed concern about the high cost of the treatment, our reporting found.

Tricare has said that it will cover many aspects of cognitive rehabilitation, which typically includes physical and speech therapy. But soldiers, families and civilian clinics told us they have had trouble convincing Tricare to pick up the tab.

Tricare's stance stands in contrast to some major private insurance companies and some state Medicaid programs, which cover the treatment. Expert panels convened by the Pentagon and the Institutes of Medicine have also endorsed the therapy, which can cost more than $50,000 per soldier.

Tricare has since commissioned the Institutes of Medicine to carry out another review of cognitive rehabilitation. The reviewkicks off on Monday but is not expected to be complete until the end of this year.

Pascrell urged the Pentagon to react more quickly to Congressional concerns.

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