Some people like skydiving. Good for them. Some of us would prefer to stay on the ground where it's safe. But, you know, this video is sort of comforting in a way, because it shows that skydiving instructors are well-trained and know how to respond in a crisis. In another way, of course, this video is ABSOLUTELY TERRIFYING.
The video description has it all: "Possibly the scariest moment of my life. On the 14th of November 2014 while doing stage five of my Accelerated Free Fall program I have a near death experience. At around 9000ft I have a seizure while attempting a left hand turn. I then spend the next 30 seconds in free fall unconscious. Thankfully my jumpmaster manages to pull my ripcord at around 4000ft. I become conscious at 3000 ft and land safely back to the ground."
Yeah, we'll be staying on the ground, thanks.
"Our data raise questions about the current recommendations," said Mayo pulmonologist, Dr. David E. Midthun, one of the study authors. "We do not have the best tool to identify who is at risk for lung cancer."
Current U.S. Preventive Services Task Force guidelines recommend annual low-dose CT screening for adults age 55 to 80 who have smoked 30 pack-years (one pack a day for 30 years), and who currently smoke or have stopped smoking within the last 15 years. This criteria is used by doctors and insurance companies to recommend and pay for scans.
According to the researchers, the percentage of lung cancer patients who smoked at least 30 pack-years declined over the study period while the proportion of cancer patients who had quit for more than 15 years rose.
"As smokers quit earlier and stay off cigarettes longer, fewer are eligible for CT screening, which has been proven effective in saving lives," said epidemiologist Dr. Ping Yang in a statement released by the Mayo Clinic Cancer Center. "Patients who do eventually develop lung cancer are diagnosed at a later stage when treatment can no longer result in a cure."
Over the study period the percentage of lung cancer patients who would have been eligible for CT screening under current guidelines fell dramatically: from 56.8% in 1984-1990 to 43.3% in 2005-2011. The proportion of men who would have been eligible decreased from 60% to 49.7%, while the percentage of women dropped from 52.3% to 36.6%.
Researchers worry about the trend. "We don't want to disincentive patients to stop smoking," Midthun told CNN in a phone interview. "When I told one of my patients about the study, his first question was, 'If I stop smoking will I have to stop screening?'"
"We want people to stop smoking, and we don't want them to lie or continue smoking just so they can be screened," added Midthun. "We need better tools to make risk calculations for those who should be screened."
The Mayo study did not take into account other risk factors for lung cancer, such as personal and family history for lung cancer or Chronic Obstructive Pulmonary Disease (COPD) because they are not in the current guidelines for reimbursement. For example, COPD "raises a person's risk for lung cancer by four to six times," said Midthun, yet "only age and pack year history are in the guidelines."
"There's nothing magical in 30-year pack history," added Midthun. He told CNN that age is an equally important factor. "For example, if a person stops smoking at age 55, his risk of lung cancer at age 70 is higher than it was at age 55 when he quit."
The study was published in the February 24, 2015 issue of JAMA, the journal of the American Medical Association. It was funded by the Mayo Clinic and grants from the National Institutes of Health and the National Institute on Aging.
Throwing a surprise “Sweet 16” party in the age of cellphones and social media is no easy task. But an entire Virginia community pulled it off for a girl with cancer.
The night of her birthday, Abby Snider thought she was going to give a speech to help raise money for the Stillbrave Childhood Cancer Foundation, a local charity that provides non-medical support for the families of kids with cancer. It was all part of an elaborate ruse to bring the teen to the George Washington Hotel in Winchester, Virginia, last Thursday evening, where 100 people (including a team from ABC affiliate WJLA) were waiting.
Snider, who was diagnosed with leukemia a year ago, spent weeks writing her speech. At the same time a group of friends, family and complete strangers worked quietly behind her back to plan the big bash. AES, a local car service, provided a stretch limo. SAS salon arranged for makeup. Other vendors donated food, flowers, photography and entertainment.
Snider’s parents had wanted to throw her the fancy sweet 16 she has been dreaming about since she was 2, she said, but with the mounting medical bills it just wasn’t in their budget. Tom Mitchell, who runs StillBrave, stepped in to rally local businesses.
“It was amazing to see how many people in community embraced the idea and helped to pull it all together,” he said.
Snider was expecting a car to pick her up for the fundraiser, so she said she was pleased rather than suspicious when a stretch limo pulled up to her house. She thought the makeup session was simply a nice touch too. None of this tipped her off to the party.
But when she walked into the ballroom and everyone shouted, “Surprise,” Snider told ABC News she was blown away.
“At first I was confused and then I started screaming and then I started crying," she said. “It was awesome. I literally felt like Cinderella for the night.”
Snider said the chemo used to treat her disease has brought her to the brink of death several times. Just recently she spent three weeks in the hospital with acute pancreatitis that resulted from her latest treatment.
“There are times you just want to give up but you have to keep going,” she said. “Even when it’s hard you just have to keep fighting.”
After missing last year’s birthday because she was too ill, Snider said she’d hoped for some kind of party this year, even if it was something small. Mitchell told ABC News he was relieved that all involved managed to keep it a secret.
“I hated lying to her but she definitely bought it hook, line and sinker,” he said.
Mitchell said the only downside to the ruse was that Snider worked so hard on a speech she didn’t get to deliver. But Snider said she’s good with that.
“I was freaking out about it and I was so relieved I didn’t have to give it,” she said. “I’ll save it for another time.”
As part of its campaign against "too much medicine" The BMJ has published reviews that question the value of screening for breast cancer in women and aneurysm in men - asking whether the harm of "over-diagnosis" outweighs the benefit of detecting and treating real cases of disease.
In the case of breast cancer, the analysis of the history of screening for the disease, written by a public health expert, calls for "urgent agreement" in the debate and controversy that exists between scientists.
For abdominal aortic aneurysm, the review about screening men who do not have symptoms suggests that the ratio of harm to benefit of carrying out these programs has worsened over the years.
This, they say, is thanks to a reduction in risk factors such as smoking, which has reduced the chance that screening will succeed in finding actual cases.
And a third paper looks at the results of surveys that gauged the level of over-diagnosis people would accept from screening programs aiming to detect different cancers - finding a wide range of attitudes to the harm or benefit of screening.
In the research on abdominal aortic aneurysm (a swelling in the main artery from the heart, which can lead to death when it ruptures), the authors estimate that 176 of every 10,000 men invited to screening are over-diagnosed.
This means smaller aneurysms being picked up - and perhaps being repaired in preventive surgery - even though they might have swelled little and presented a low risk of rupturing.
The researchers describe the real-life consequences of the programs, which, in the UK, invite all men over the age of 65 for screening, and in the US, only those who have smoked (a risk factor that greatly increases the likelihood of an aneurysm). They explain:
"These men are unnecessarily turned into patients and may experience appreciable anxiety throughout their remaining lives."
"Moreover," the authors continue, "37 of these men [out of every 10,000 screened] unnecessarily have preventive surgery and 1.6 of them die as a consequence."
The authors quote men who have had abdominal aortic aneurysms detected by screening - they "report existential thoughts about frailty and mortality after diagnosis." One man describes his diagnosis as "a ticking bomb inside your stomach."
In addition to such risks of psychological burden, the authors cite the surgical risks for those who undergo a preventive operation, and the public health implications over cost-effectiveness.
"When health authorities invite asymptomatic men to screening, there should be no doubt that benefits clearly outweigh harms," the authors conclude. "We cannot judge whether this is true of abdominal aortic aneurysm screening: the harms have not been adequately investigated, as is true for cancer screening."
Value of breast cancer screening 'can be improved'
On the question of how good the harm-to-benefit ratio is for breast cancer screening, Prof. Alexandra Barratt, from the School of Public Health at the University of Sydney in Australia, gives an overview of the history of screening programs, and offers a list of ways to improve their benefit.
Writing her review for The BMJ's "too much medicine" campaign, Prof. Barratt believes "agreement between experts about over-diagnosis in breast cancer screening is urgently needed so that women can be better informed." She presses for the following measures, too:
- Do better research to quantify the true amount of over-diagnosis - by developing "internationally agreed standards" for studies that monitor the problem created by screening programs
- Investigate less aggressive treatment options for screen-detected breast cancers
- Be more wary of new technology - for example, digital mammography has increased cancer detection without reducing death rates, so three-dimensional mammography (tomosynthesis), which "promises a 30-50% increase in detection of breast cancers" should not be implemented without more research on "whether it alters the balance of benefit and harm"
- Provide quality information to women. "Many women continue to be 'prescribed' or encouraged to undergo screening rather than being supported to make an informed choice," says Prof. Barratt, yet "information is an intervention that may have both positive and detrimental effects"
- Think twice before extending screening programs - "extending screening to women in their 70s has been shown to significantly increase the incidence of early-stage breast cancer, and this could have detrimental effects for older women."
Prof. Barrett says lessons have been learned in breast cancer screening that should inform programs for other cancers. Breast cancer has "led the way in developing awareness" about the potential for screening to over-diagnose and treat people who have no symptoms, and this is also needed for "the early detection of lung and thyroid cancers, as well as breast and prostate cancers."
This neatly leads to the subject of the third paper, on cancer screening more generally, which analyzes people's risk attitudes in relation to the early detection of different cancers and varying levels of benefit.
Over-detection is acceptable to patients
Dr. Ann Van den Bruel - a senior clinical research fellow at the University of Oxford's Nuffield department of primary care health sciences in the UK - conducted a survey with colleagues "to describe the level of over-detection people would find acceptable in screening for breast, prostate and bowel cancer."
Her "striking" findings, from asking people in the UK's general population, were that more people would accept a screening program that created over-detection "in the entire population" being tested than would accept "no over-detection at all."
People aged 50 or older accepted less over-detection, however, and there was a wide overall variation in the risks of over-diagnosis that people would accept from cancer screening.
The average levels of "acceptability" ranged from 113 cases of over-detection in every 1,000 people screened, to 313 cases.
People were significantly less happy to accept the risk of being over-diagnosed with bowel cancer than they were of this happening with breast or prostate cancer - the latter, in other words, being more worthwhile screening for in terms of perceived benefit versus risk.
The following results from the study highlight the two extremes expressed for attitudes to screening:
- 4-7% of respondents indicated they would tolerate no amount of over-detection at all from a screening program
- 7-14% considered it would be acceptable for the entire screened population to be over-detected - that is, doing the screening would be worthwhile even if it resulted in all 1,000 people tested being unnecessarily diagnosed.
The survey asked questions about three different types of cancer screening: breast cancer for women, prostate cancer for men, and bowel cancer for both.
For each type, the researchers presented the absolute number of cases there were each year in the UK, plus a description of the treatment, including adverse effects. They then presented two scenarios of screening effectiveness: a 10% reduction in deaths from the specific cancer, or a 50% cut.
Dr. Van den Bruel says:
"People accepted more over-detection when they perceived a higher benefit from cancer screening, so from a 10% mortality reduction to 50% mortality reduction, median acceptability increased significantly, with a maximum of 313 cases per 1,000 people screened for breast cancer."
What she wanted, the patient told the geriatricians evaluating her, was to be able to return to her condominium in Boston. She had long lived there on her own, lifting weights to keep fit and doing her own grocery shopping, until a heart condition worsened and she could barely manage the stairs.
So at 94, she consented to valve replacement surgery at a Boston medical center. “She never wanted to go to a nursing home,” said Dr. Perla Macip, one of the patient’s geriatricians. “That was her worst fear.”
Dr. Macip presented the case on Saturday to a meeting of the American Academy of Hospice and Palliative Medicine. The presentation’s dispiriting title: “The 30-Day Mortality Rule in Surgery: Does This Number Prolong Unnecessary Suffering in Vulnerable Elderly Patients?”
Like Dr. Macip, a growing number of physicians and researchers have grown critical of 30-day mortality as a measure of surgical success. That seemingly innocuous metric, they argue, may actually undermine appropriate care, especially for older adults.
The experience of Dr. Macip’s patient — whom she calls Ms. S. — shows why.
Ms. S. sustained cardiopulmonary arrest during the operation and needed resuscitation. A series of complications followed: irregular heartbeat, fluid in her lungs, kidney damage, pneumonia. She had a stroke and moved in and out of the intensive care unit, off and on a ventilator.
After two weeks, “she was depressed and stopped eating,” Dr. Macip said. The geriatricians recommended a “goals of care” discussion to clarify whether Ms. S., who remained mentally clear, wanted to continue such aggressive treatment.
But “the surgeons were optimistic that she would recover” and declined, Dr. Macip said.
So a discussion of palliative care options was deferred until Day 30 after her operation, by which time Ms. S. had developed sepsis and multiple-organ failure. She died on Day 31, after life support was discontinued.
The key number here, surgeons and other medical professionals will recognize, is 30.
Thirty-day mortality serves as a traditional yardstick for surgical quality. Several states, including Massachusetts, require public reporting of 30-day mortality after cardiac procedures. Medicare has also begun to use certain risk-adjusted 30-day mortality measures, like deaths after pneumonia and heart attacks, to penalize hospitals with poor performance and reward those with better outcomes.
However laudable the intent, reliance on 30-day mortality as a surgical report card has also generated growing controversy. Some experts believe pressures for superior 30-day statistics can cause unacknowledged harm, discouraging surgery for patients who could benefit and sentencing others to long stays in I.C.U.s and nursing homes.
“Thirty days is a game-able number,” said Dr. Gretchen Schwarze, a vascular surgeon at the University of Wisconsin-Madison and co-author of an editorial on the metric in JAMA Surgery. Last fall, she led a session about the ethics of 30-day mortality reporting at an American College of Surgeons conference.
“Surgeons in the audience stood up and said, ‘I can’t operate on some people because it’s going to hurt our 30-day mortality statistics,’” she recalled. The debate is particularly urgent for older adults, who are more likely to undergo surgery and to have complications.
Those questioning the 30-day metric point to potential dilemmas at both ends of the surgical spectrum. Surgeons may decline to operate on high-risk patients, even those who understand and accept the trade-offs, because of fears (conscious or not) that deaths could hurt their 30-day results.
At a hospital in Pennsylvania, for instance, a cardiothoracic surgeon declined to operate on a man who urgently needed a mitral valve replacement. He wasn’t elderly, at 53, but he was an alcoholic whose liver damage increased his risk of dying.
Dr. Douglas White, the director of ethics and decision-making in critical illness at the University of Pittsburgh School of Medicine, was asked to consult. According to Dr. White, the surgeon explained that “we have been told that our publicly reported numbers are bad, and we have to take fewer high-risk patients.”
Other surgeons at the hospital, under similar pressure, also refused. A helicopter flew the patient to another hospital for surgery.
An outlier case? A study in JAMA in 2012 compared three states that require public reporting of coronary stenting results to seven nearby states that didn’t report. Older-adult patients having acute heart attacks had substantially lower rates of the stenting in the reporting states. Doctors’ concerns about disclosure of poor outcomes might have led them to perform fewer procedures, the authors speculated; they might also have weeded out poorer candidates for surgery.
Perhaps as important for older people, when things go wrong, surgical teams concerned about their 30-day metrics may delay important conversations about palliative care or hospice, or even override advance directives.
“There are no good published studies on this, but it’s something we see,” Dr. White said. “Surgeons are reluctant to withdraw life support before 30 days, and less reluctant after 30 days.”
That may have been what happened to Ms. S. Or perhaps her aggressive treatment resulted from a surgical ethos that has little to do with mortality reports.
“We want to cure patients and help them live, and we consider it a failure if they don’t,” said Dr. Anne Mosenthal, who heads the American College of Surgeons committee on surgical palliative care.
With surgeons already prone to optimism and disinclined to withdraw life support, the effect of reporting failures, if there is one, is subtle. Surgeons tell themselves, “Maybe if we wait a little longer, he’ll improve; there’s always a chance,” Dr. Mosenthal said.
But many older patients, and their families, have different ideas about what makes life worth sustaining and might welcome a frank discussion before a month passes.
“The 30-day mortality statistic creates a conflict of interests,” said Dr. Lisa Lehmann, an associate professor of medical ethics at Harvard Medical School. “It can lead to the violation of a physician’s duty to put patients’ interests first.”
Leaders at the nonprofit National Quality Forum, which just endorsed 30-day mortality as a measure for coronary bypass surgery, find such fears overblown. The forum evaluates quality measures for Medicare and other insurers, and went ahead with its endorsement despite some physicians’ objections.
“There is some concern,” said Dr. Helen Burstin, the chief scientific officer of the forum, but “certainly no evidence” that the metric is unduly influencing patient care.
“Is it better not to measure and compare, just because we can’t get it perfect?” added Dr. Lee Fleisher, a co-chairman of the forum’s surgery standing committee.
But critics think other quality measures might serve better. Perhaps the benchmark should be 60- or 90-day mortality. Perhaps patients having palliative surgery to relieve symptoms should be tracked separately, because comfort is their goal, not survival.
Maybe quality should include days spent in an I.C.U. or on a ventilator, Dr. Schwarze said.
“Medicine isn’t just about keeping people alive,” she said. “Some of it is about relieving suffering. Some of it is about helping people die.”
A University of Missouri nurse researcher is working to ensure people who use hearing aids for the first time are not bombarded by sounds that could be overwhelming and potentially painful.
Individuals who wear hearing aids for the first time can potentially hear sounds they have not heard in months of even years, according to a University of Missouri news release on the research. The study, published online Dec. 17, in the journal Clinical Nursing Research, looked at the feasibility and initial effect of Hearing Aid Reintroduction to assist people 70 to 85 years old to adjust to hearing aids.
Some of the noises hearing aids enable their users to hear are not always easy to embrace, researchers found. These include air conditioners, wind and background conversations which can be annoying, painful and tough to ignore, the release said.
Kari Lane, PhD, RN, MOT, assistant professor of nursing at MU Sinclair School of Nursing, studied a group of elderly adults’ satisfaction with hearing aids after participating in HEAR, according to the release. Study participants recorded the total time they wore hearing aids for 30 days. Participants gradually increased the amount of time they wore the hearing aids and the variety and complexity of sounds they experienced, including household appliances or sounds from crowded areas, the release said.
“Hearing loss is a common health problem facing many aging adults that can have serious effects on their quality of life, including heightened chances of depression and dementia,” Lane said in the release. “Hearing aids are not an easy fix to hearing loss. Unlike glasses, which provide instant results, it takes more time for the brains of hearing-aid users to fully adjust to the aids and new sounds they could not hear before.”
All participants at the start of the research reported being unsatisfied with their hearing aids, Lane said. At the end of the study, more than half of participants reported being able to increase their hearing aid use and 60% of them said they were satisfied with their hearing aids, the release stated.
“It is common practice for audiologists to have their patients wear hearing aids all day when they first buy them, but not all persons are able to do this comfortably,” Lane said in the release. “Prior research shows there is a need for alternative ways to teach people how to use hearing aids like the HEAR intervention, which allows hearing-aid users to gradually adjust to using the aids while receiving support and coaching from health professionals and family members.”
Healthcare providers should give patients guidance on conditions they might experience during the aging process, such as hearing loss, according to the release. Such proaction could help to reduce the stigma surrounding hearing aids, Lane said.
“If healthcare professionals begin discussing hearing loss with their patients sooner, before problems arise, the use of hearing aids could be normalized, and individuals would be better prepared for the transition when it is time for them to begin use,” Lane said in the release.
A nurse who contracted Ebola at the Dallas hospital where she worked plans to sue the hospital's parent company, Texas Health Resources, hoping to be a "voice for other nurses," her lawyer said today.
In the suit, which Nina Pham plans to file Monday, the 26-year-old nurse alleges that Texas Health Presbyterian Hospital didn't train the staff to treat Ebola and didn't give them proper protective gear, which left parts of their skin exposed, her lawyer Charla Aldous said.
"One of the most concerning things about the way [the hospital] handled this entire process is you've got a young lady who has this disease which she should not have. And if they properly trained her and given her the proper personal protective equipment to wear, she would not have gotten the disease," Aldous said.
Aldous said Pham hopes the suit will "help make sure that hospitals and big corporations properly train their nurses and healthcare providers."
"This is not something that Nina chose," Aldous said, but "She's hoping that through this lawsuit she can make it a change for the better for all nurses."
Pham is still coping with Ebola's after-effects, including nightmares and body aches, her lawyer said.
"She has not gone back to work yet and she is working on recovering," Aldous said. "I don't know if she'll ever be a nurse again."
Texas Health Resources spokesperson Wendell Watson said in a statement: "Nina Pham bravely served Texas Health Dallas during a most difficult time. We continue to support and wish the best for her, and we remain optimistic that constructive dialogue can resolve this matter."
Last fall, Pham cared for Liberian native Thomas Eric Duncan, who flew to the U.S. and was diagnosed with Ebola at Texas Health Presbyterian Hospital.
Pham took care of Duncan when he was especially contagious, and on Oct. 8, Duncan died from the virus.
Pham tested positive for Ebola on Oct. 11, marking the first Ebola transmission on U.S. soil.
On Oct. 16, Pham was transferred to the National Institutes of Health's hospital in Bethesda, Maryland. She was discharged on Oct. 24.
At the news conference announcing Pham's discharge, Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases at the NIH, said she tested negative for Ebola five times, and that it wasn't clear which treatment saved her because they were all experimental.
"I want to first tell you what a great pleasure and in many respects, a privilege ... to have the opportunity to treat and care for and get to know such an extremely courageous and lovely person," Fauci said, adding that she represents the health care workers who "put themselves on the line."
Pham's dog, Bentley, was also quarantined for several weeks, over fears that he, too, would develop Ebola.
A blind man is now able to see objects and people again, including his wife and family, for the first time in a decade. How? With the help of a bionic eye implant.
Affected by a degenerative condition known as retinitis pigmentosa, Allen Zderad was effectively blind, unable to see anything but a bright light. As the condition has no cure, Zderad, from Minneapolis-Saint Paul, MN, was forced to quit his professional career.
He made adjustments to his lifestyle and was able to continue woodworking through his sense of touch and spatial awareness. However, with the help of his new retinal prosthesis, Zderad is now able to make out the outlines of objects and people, and could even register his reflection in a window.
"I would like to say I think he's a remarkable man, when you consider what he's overcome in dealing with his visual disability," says Dr. Raymond Iezzi Jr., an ophthalmologist from the Mayo Clinic. "To be able to have offered him the retinal prosthesis to enhance what he can already do was a great honor for me."
Retinitis pigmentosa is an inherited condition that causes the degeneration of specific cells in the retina called photoreceptors. The disease can cause some people to lose their entire vision. Mr. Zderad's grandson has the disease in its early stages and, after seeing him, Dr. Iezzi asked if he could meet his grandfather.
The eye implant that Zderad now has works by bypassing the damaged retina and sending light wave signals directly to the optic nerve. A small chip was attached to the back of the eye with multiple electrodes offering 60 points of stimulation.
'Not like any form of vision that he's had before'
Wires from the device on the retinal surface connect to a pair of glasses worn by Mr. Zderad. The glasses have a camera at the bridge of the nose that relay images to a small computer worn in a belt pack. These images are then processed and transmitted as visual information to the implant which in turn interprets them, passing them on to the retina and eventually the brain.
"Mr. Zderad is experiencing what we call artificial vision," explains Dr. Iezzi. "It's not like any form of vision that he's had before. He's receiving pulses of electrical signal that are going on to his retina and those are producing small flashes of light called electro-phosphenes. These small flashes of light are sort of like the points of light on a scoreboard at a baseball game."
There are only 60 of these flashes of light, but it is enough for Zderad to reconstruct scenes and objects. Although he will not be able to see the details of faces or read, Mr. Zderad will now be able to navigate through crowded environments without the use of a cane, significantly improving his quality of life.
Dr. Iezzi would like to see the technology expanded to patients who have lost the use of their eyes, such as wounded soldiers or people with advanced diabetes or glaucoma.
"In addition, while Mr. Zderad has 60 points of stimulation, if we were able to increase that number to several hundred points of stimulation, I think we could extend the technology so that patients could recognize faces and perhaps even read," he concludes.
"It's crude, but it's significant," said Zderad happily, as he first used the device. "It'll work."
Zderad will now be able to see his family again, including his 10 grandchildren and his wife, Carmen. And how does he distinguish her, having not seen her for a decade? "It's easy," says Zderad, "she's the most beautiful one in the room."
At the end of last year, Medical News Today reported on the story of a woman with quadriplegia who is now able to use her mind to move a robotic arm, demonstrating "10° brain control" of the prosthetic.
I find it strangely interesting that this time last year, as I was enduring the beginning of my life with a TBI, I had no idea that March was National Brain Injury Awareness Month. This year I feel compelled to shout it from the rooftops (or the computer screen)! Over the next few weeks, I intend to share with you stories and journeys of those living with a traumatic brain injury (TBI) or caring for a loved one who is recovering from one. My hope is to educate those who aren't familiar with TBI, and to help other TBI-ers understand that they are not alone, and that their symptoms are not just "in their head" (pun intended).
Let me start by offering you some statistics on TBI from BrainTrauma.org:
- Traumatic brain injury (TBI) is the leading cause of death and disability in children and adults from ages 1 to 44.
- Brain injuries are most often caused by motor vehicle crashes, sports injuries, or simple falls on the playground, at work or in the home.
- Every year, approximately 52,000 deaths occur from traumatic brain injury.
- An estimated 1.5 million head injuries occur every year in the United States emergency rooms.
- An estimated 1.6 million to 3.8 million sports-related TBIs occur each year.
- At least 5.3 million Americans, 2 percent of the U.S. population, currently live with disabilities resulting from TBI.
- Moderate & severe head injury (respectively) is associated with a 2.3 and 4.5 times increased risk of Alzheimer's disease.
- Males are about twice as likely as females to experience a TBI.
- Exposures to blasts are a leading cause of TBI among active duty military personnel in war zones.
- Veterans' advocates believe that between 10 and 20 percent of Iraq veterans, or 150,000 and 300,000 service members have some level of TBI.
- 30 percent of soldiers admitted to Walter Reed Army Medical Center have been diagnosed as having had a TBI.
- The number of people with TBI who are not seen in an emergency department or who receive no care is unknown.
There are three levels of traumatic brain injuries: mild, moderate and severe. Don't let these names fool you. A mild TBI is just as serious as a moderate or severe one. The names refer to loss of consciousness and mental alteration as a result of the trauma. In my case, we think I was unconscious for only about a minute or so, therefore classifying me as "mild". But like I said, don't let the name fool you. The resulting damage can be the same for all three -- a TBI does not discriminate.
A TBI changes you. Literally and figuratively. My personality is different. My energy levels and sleep patterns are foreign to me. The confused woman in the kitchen staring at the oven is someone I am just now starting to understand. The woman who has to write a Post-it note for every single task on her to-do list is no longer the multi-tasker she once was. The woman who used to type at 100 words per minute with zero mistakes now has to take her time and correct many keystroke errors as she goes because her brain gets confused with letters.
I am finally coming to terms with this "new me." It has been just over a year since I fell on the ice, landing full force on my skull. In the beginning I was angry. I was confused. I was in a lot of pain, both physically and emotionally. People didn't understand. Didn't believe me. Couldn't understand my hidden injuries. I didn't have a strong support system, but what I did have was determination!
Life with an "invisible" injury or illness can be a real challenge. Since I posted my last blog, "Life With a Traumatic Brain Injury," on The Huffington Post last month, I have made an entirely new circle of friends. I created a group on Facebook, affectionately named "The TBI Tribe." This is a safe place where we can hang out, talk, vent frustrations, share in each other's successes, and more importantly, have a place where we all feel like we fit in. I was craving an environment where others understood my struggles and didn't pass judgement. I have found exactly that in this tribe!
I want to share with you a little bit about one of my new friends, Jennifer L. White from St. Louis, Missouri:
In July of 2000 Jennifer collapsed in her Atlanta, Georgia apartment. She called 911 and told them she was dying. She did, in fact, die in the ambulance on her way to the hospital. Fortunately medics were able to resuscitate her. Doctors determined that she had had a stroke and performed brain surgery to eradicate the brain bleed. She spent 10 days in the ICU followed by several months in a rehab facility. Overnight she went from the vice president of a large marketing firm, to unemployable and on disability. The massive stroke has left Jennifer with cognitive deficiencies, balance issues, and double vision. She jokes that she can, however, make a killer peanut butter sandwich! It's important to have a good sense of humor when dealing with a TBI. Aside from her impairments, Jennifer looks completely healthy and "normal." A few words from Jennifer:
The brain injury has affected me in a variety of ways. Emotionally, I am fragile but working hard to toughen my spirit. I am much more introspective (I don't know if this is from the actual brain injury or the fact I now have more time to be introspective). Things are just harder for me than most people. I have to actually think seriously about where I am stepping.
I define my life in two ways: before and after the stroke. It has certainly delivered me a tough blow. I have been advised not to have children. I am scared that I am predisposed to have something else happen to me, and I am sorry that I don't find sweetness in the sweet things in life because I am more bitter than I want to be. But call me crazy... I am glad to be alive.
I hope that you will join me this month as I share with you more stories and continue to bring awareness to the world about TBI.
DONALD G. McNEIL Jr.
A major study testing whether Americans would take their H.I.V. drugs every day if they were paid to do so has essentially failed, the scientists running it announced Tuesday at an AIDS conference here.
Paying patients in the Bronx and in Washington — where infection rates are high among poor blacks and Hispanics — up to $280 a year to take their pills daily improved overall adherence rates very little, the study’s authors said.
The hope was that the drugs would not only improve the health of the people taking them, but help slow the spread of H.I.V. infections. H.I.V. patients who take their medicine regularly are about 95 percent less likely to infect others than patients who do not. The Centers for Disease Control and Prevention estimates that only a quarter of all 1.1 million Americans with H.I.V. are taking their drugs regularly enough to not be infectious.
Paying patients $25 to take H.I.V. tests, and then $100 to return for the results and meet a doctor, also failed, the study found.
“We did not see a significant effect of financial incentives,” said Dr. Wafaa M. El-Sadr, an AIDS expert at Columbia University and the lead investigator. But, she said, there is “promise for using such incentives in a targeted manner.”
Cash payments might still work for some patients and some poor-performing clinics, she said.
Other H.I.V.-prevention research released here Tuesday offered good news for gay men but disappointing results for African women.
Two studies — both of gay men, one in Britain and the other in France — confirmed earlier research showing that pills to prevent infection can be extremely effective if taken daily or before and after sex. Both were stopped early because they were working so well that it would have been unethical to let them continue with men in control groups who were not given the medicine.
But a large trial involving African women of a vaginal gel containing an antiviral drug failed — apparently because 87 percent of the women in the trial were unable to use the gel regularly.
The failure of the cash-incentives trial was a surprise and a disappointment to scientists and advocates. It had paid out $2.8 million to 9,000 patients in 39 clinics over three years, but the clinics where money was distributed did only 5 percent better than those that did not — a statistically insignificant difference.
Some small clinics and those where patients had been doing poorly at the start of the study did improve as much as 13 percent, however.
People in other countries have been successfully paid to stop smoking while pregnant and to get their children to school. In Africa, paying poor teenage girls to attend school lowered their H.I.V. rates; scientists concluded that it eased the pressure on them to succumb to “sugar daddies” — older men who gave them money for food, clothes and school fees in return for sex.
One study presented here at the annual Conference on Retroviruses and Opportunistic Infections estimated that every prevented H.I.V. infection saved $230,000 to $338,000. Much of that cost is borne by taxpayers.
Mathematical modeling suggested that paying people up to $5,000 a year could be cost effective, Dr. El-Sadr said, but $280 was settled on after a long, difficult debate.
Paying more than $280 at some clinics was not an option, she said; achieving statistical relevance would have meant signing up even more clinics. The study had already involved almost every H.I.V. patient in the Bronx and Washington.
“I don’t think anyone has an answer to what amount would be sufficient without being excessive,” Dr. El-Sadr said.
One advocate suggested that more money could work — in the right setting.
“In South Africa, $280 is a lot of money,” said Mitchell Warren, the executive director of AVAC, an organization that lobbies for AIDS prevention. “For that much, you’d definitely get some behavior change.”
The two studies among gay men looked at different ways to take pills. A 2010 American study, known as iPrEx, showed that taking Truvada — a combination of two antiretroviral drugs — worked if taken daily.
The British study, known as PROUD, used that dosing schedule, and men who took the pill daily were protected 86 percent of the time.
In the French trial, known as Ipergay, men were advised to take two pills in the two days before they anticipated having sex and two in the 24 hours afterward.
Those who took them correctly also got 86 percent protection.
“The problem,” Dr. Susan P. Buchbinder, director of H.I.V. prevention research for the San Francisco health department, said in a speech here commenting on the study, “is that studies have shown that men are very good at predicting when they will not have sex and not good at predicting when they will.”
The African study, known as FACTS 001, was a follow-up to the smaller trial from 2010, which showed that South African women who used a vaginal gel containing tenofovir, an antiviral drug, before and after sex were 39 percent better protected than women who did not.
But it also found that many women failed to use the gel because it was messy or inconvenient or because partners objected.
In this trial, there was virtually no effect.
One problem, said Dr. Helen Rees, the chief investigator, was that the women were very young — the median age was 23, and most lived with their parents or siblings.
“They had no privacy for sex,” she said. “They had to go outside to use the product.”
Mr. Warren, of AVAC, said: “The women wanted a product they could use. But this particular product didn’t fit into the realities of their daily lives.”
The development means that advocates are hoping even more that other interventions for women now in trials will work. They include long-lasting injections of antiretroviral drugs and vaginal rings that can be inserted once a month and leach the drugs slowly into the vaginal wall.
Another trial in Africa, the Partners Demonstration Project, conducted among couples in which one partner had H.I.V. and the other did not, found it was extremely effective to simultaneously offer treatment to the infected partner and preventive drugs to the uninfected one until the other’s drugs took full effect.
In the group getting the treatment, there were zero infections that could be traced to partners who were in the study.