Saturday, September 8, 2012

Many Patients With Defibrillators Face a Dilemma -

Monsters attacked Avery de Groh when she was 4. That is how she remembers the day in 2007 when the defibrillator in her chest misfired, sending nine electric shocks through her body in less than 30 minutes.

Today, Avery is a chatty 9-year-old who just learned to roller-skate. She is old enough to know that she was not really attacked by monsters. The culprit was a broken wire from the defibrillator that keeps her heart beating normally. Like her mother and two brothers, she has an inherited condition that makes her prone to a fatal heart rhythm. After Avery's episode, doctors removed the faulty wire, made by Medtronic, and replaced it with a new one made by St. Jude Medical.

Now it is possible that one is damaged, too. The wire, or lead, known as the Riata, was recalled in December after St. Jude warned doctors that internal cables were poking through the outer casing, causing unwanted shocks or failing to work when needed. Nearly 20 percent of the 128,000 people worldwide who have the Riata may be affected, according to the company.

Molly de Groh, Avery's mother, said she worried that Avery's new lead would also malfunction. "When I think about how scary it was for her," she said, "I feel like, give that to me, and let her be fine."

Heart device specialists have struggled for months to determine how best to treat patients with damaged leads. There is no easy fix: removing the wires can be dangerous, but so can leaving them in. In August, the Food and Drug Administration recommended that all patients with the Riata undergo imaging to see if their lead was failing. But the guidelines did little to settle the matter after some doctors questioned the wisdom of the advice.

Patients are caught in the middle, forced to grapple with life-or-death decisions for which there are no easy answers.

Mark Ulrich has decided not to wait. Several years ago, Mr. Ulrich's defibrillator misfired in reaction to a medication he was taking. "I was pretty well barbecued," said Mr. Ulrich, who is 68 and lives in Manhattan. "I would rather not be turned into a shish kebab."

Dr. Jeffrey N. Rottman, a heart device specialist at Vanderbilt University, said most of his patients with damaged leads had elected to have them removed. "I think people who have a defibrillator already have a 'just fix it' type of approach," he said.

That was Jacob Everidge's attitude. Mr. Everidge, a 23-year-old from Athens, Ala., who has a condition that thickens the heart muscle, had his Riata removed by Dr. Rottman on Aug. 20. "I would much rather go ahead and get it out," he said. "It wasn't even a decision."

For now, Ms. de Groh said, she will follow her doctor's advice to wait and see if Avery's lead begins to fail. But that raises other painful questions. Should the de Grohs cancel a family vacation in the Catskills, where they'll be a half-hour from the nearest hospital? Can they send Avery to a sleepover? "As a mom of a fourth grader, I've got to send her to school," said Ms. de Groh, a nurse in McHenry, Ill., a small town northwest of Chicago. But "for her not to be in my sight at all times is scary."

Ms. de Groh and all three of her children were born with Long QT syndrome, which can cause their hearts to beat abnormally. She has a defibrillator made by Boston Scientific. Her 5-year-old son, Oliver, has the Durata, a newer lead made by St. Jude, whose safety has also been questioned recently. Her younger son, 3-month-old Monty, is too young for the operation, but he will eventually need a defibrillator, too. Because of her family history, Ms. de Groh has traveled twice to Washington to lobby lawmakers on device safety, but said she learned of the Riata recall only in August, after reading a newsletter written by a patient advocacy group.

She said she was angry at the F.D.A. and St. Jude for not contacting patients directly. "When something is implanted in a body, especially a child's body, how can I find out about it through a newsletter?" she asked. Avery's doctor, Marc Ovadia, said he chose not to tell Ms. De Groh about the recall because Avery's lead is functioning "perfectly" and replacing it would require cracking open her chest. Telling patients about the recall, he said, could lead to unnecessary worry. "We want to make sure before we yell 'fire' in a crowded theater that this is fire," he said. Still, he said, he regrets that Ms. de Groh found out about the recall the way she did. "These are tough, tough issues," he said.

Mrs. de Groh's frustration echoed that of consumer advocates who have criticized manufacturers and the F.D.A. for what they said was inadequate testing of medical devices before approval and a chaotic system for identifying problems once they are on the market.

In one example of the conflicting information about the devices, St. Jude reported last November that the problem with the Riata leads was affecting less than 1 percent of patients. But an internal report by an F.D.A. employee that month challenged that assessment, arguing that the company was underestimating the problem. The agency did not publicize the report, which was obtained through a Freedom of Information Act request and provided to The New York Times by a lawyer whose client is suing St. Jude.

The F.D.A. analysis proved to be correct: in July, a new St. Jude study found that the Riata showed signs of failing in 19 percent of patients.

The F.D.A. declined to comment on the report, other than to say that it was not unusual for the agency and the manufacturer to evaluate safety risks differently. Mitchell Shein, a manager in the F.D.A.'s division of cardiovascular devices, said deciding when to communicate with the public was often a tough call. "We're very, very cautious to enter the public discourse on a medical issue unless we think we have something to add to that," he said.

In addition to its recommendations that all patients with the Riata undergo imaging tests, the agency also ordered St. Jude to conduct additional studies on the Riata, which is no longer sold, and the Durata. Both were designed to be thinner than competing leads sold by Boston Scientific and Medtronic, making them easier to guide through blood vessels.

The Durata is made with a new coating that the company said seemed to have fixed the issue, but a study by a leading heart researcher has recently called that into question.

When a defibrillator is implanted, the lead is threaded through a blood vessel until it reaches the heart. In time, scar tissue can build up around it, making removal risky. The agency advised against removing the leads pre-emptively and said patients who had not experienced problems should undergo regular monitoring.

Some doctors have challenged the recommendation against routinely removing the leads, arguing that they can cause other problems when left in, like interfering with replacement leads. "There are potential risks associated with all options," said Dr. Laurence Epstein, a heart device specialist at Brigham and Women's Hospital in Boston.

Dr. Ovadia, a heart device specialist at Advocate Lutheran General Children's Hospital outside of Chicago, said he did not know that the F.D.A. was recommending that all Riata patients undergo imaging tests until a reporter told him about the agency's advice. And he said a St. Jude sales representative did not inform him of the new recommendations in a conversation in late August.

A St. Jude spokeswoman said the company notified doctors about the F.D.A. recommendations in a letter posted to its Web site, which it also sent to St. Jude field representatives. The letter explained the F.D.A.'s position on imaging, but also noted the issue was "complex and needs to take into account additional patient circumstances."

In a separate statement, St. Jude said the company "continues to work closely with the F.D.A. and communicate important information with accuracy and integrity in a timely manner to inform patient care."

Ms. de Groh said her thoughts had been turning to her baby, Monty. For now, he takes beta blockers to regulate his heartbeat. Common sense would tell her that he should receive a defibrillator when he is old enough. After all, medical devices fail in only a tiny percentage of cases.

"They're supposed to save their life, but all it's done in our family is cause problems," Ms. de Groh said. "So you're really conflicted as a parent on how to treat your kid if these devices are going to constantly be a source of fear and worry."

Friday, September 7, 2012

A Clash Over Vertos Medical’s Promising Procedure -

Dr. Daryl F. Fourney's role as a lead researcher in a clinical trial for a device to treat back pain began normally enough.

Under his agreement with the device maker, the neurosurgeon was supposed to report on how patients had fared six months after undergoing the treatment, which involves removing tissue that is compressing the spine.

The trial started well and by the six-month mark, most patients had improved. But then he began hearing from some patients who, beyond six months, were experiencing pain again — so severely, in fact, that they had to undergo the type of back surgery they had hoped to avoid.

That's where Dr. Fourney's experience stopped being routine. What happened next provides a glimpse into the sometimes contentious world of medical testing and the federal rules that allow device makers to market new products with little or no data about their long-term effectiveness or safety.

Unlike prescription drugs, many medical devices are cleared for sale by the Food and Drug Administration without extensive studies in patients. In recent years, some of those devices, which seemed effective at first, have gone on to fail catastrophically.

Last year, when Dr. Fourney told the device maker, Vertos Medical, that his report would describe the problems that patients experienced after the six-month trial, the company filed a complaint with the University of Saskatchewan, where he is a professor. In that complaint, Vertos accused Dr. Fourney of scientific misconduct and violating "research ethics" by failing, among other things, to follow the study's original protocol and by independently deciding to follow his patients for added time without seeking agreement from Vertos.

Vertos and its medical allies have kept up the pressure, contending that Dr. Fourney's report, which was recently published in the medical journal Neurosurgery, is flawed. For his part, Dr. Fourney said he had a duty to report what he had found.

"I don't blame industry for wanting to promote a product," said Dr. Fourney, who has worked on other studies. "But we have an obligation to our patients."

Vertos says that more than 10,000 patients nationwide have undergone its procedure and insist it is safe and effective. It is one of several treatments for lumbar spinal stenosis — a common condition of aging that can make standing or walking painful.

In what is considered a minimally invasive procedure, a small opening is made in the back and a special device is then used to scrape away spinal tissue that has thickened, reducing pain and increasing mobility.

Vertos says the treatment, which it markets under the brand name Mild, is intended for patients who do not yet need back surgery. Often cortisone shots are used to control pain in such patients, but Vertos says that its treatment, which costs about $5,000, is better and longer-lasting than shots, which have to be frequently repeated.

The company's chief executive, James M. Corbett, also called Dr. Fourney's findings an outlier, adding that other studies had positive results. "We have good evidence that these patients can have extended relief of their symptoms," he said.

As with many newer products and procedures, there is limited data to judge such claims. A Vertos consultant, Dr. Bohdan W. Chopko, said he expected to publish a report soon showing good results in 45 patients he has followed for two years.

In 2010, Dr. Chopko published a positive, short-term report on some 75 patients who had undergone the Vertos procedure. But he said that apart from the 45 patients mentioned in the coming report, he did not know what happened to the 30 other patients from his 2010 study, adding that it was not unusual for patients no longer to be followed because researchers lost contact with them or because they did not respond to subsequent inquiries.

One spine expert, Dr. Eugene J. Carragee, said it was not surprising to see device producers like Vertos laud studies that supported their product and denounce ones that did not. But the intensity of the complaints by Vertos about Dr. Fourney reminded him, he said, of a time not that long ago when a manufacturer could prevent a study with negative results from being published.

"Either this company has a poor or odd understanding of what the ethical responsibilities of a researcher are or this was a naked attempt at intimidation," said Dr. Carragee, who is a professor at Stanford.

Dr. Fourney said he became involved with Vertos in 2008 because he knew one of the developers of the company's procedure and believed it held promise. And initially, the 10 patients he treated experienced relief.

But some patients contacted Dr. Fourney after their time in the study was over to complain of returning pain. Since he was also the doctor who regularly treated those patients for back pain, he kept tracking them, he said.

By 2010, he had performed traditional back surgery on six of those 10 patients to relieve their pain, a failure rate that he deemed "unacceptably high."

"This raised a red flag," he said.

By then, he had also stopped enrolling patients in his study. Last year, after he sent a draft copy of his report to Vertos, the fireworks started. Mr. Corbett, the company's chief executive, told the surgeon in a letter that his findings were a "gross misrepresentation of the facts." Vertos also filed a formal complaint of misconduct against him with the University of Saskatchewan.

The company argued, among other things, that Dr. Fourney had violated his agreement by expanding the study's term. It also argued that the patients he chose for the study were ill-suited since they were already surgery candidates. The surgeon said that Vertos had initially promoted its procedure to doctors as an alternative to surgery and added that the study's protocol did not bar patients who were surgery candidates.

In an interview, Mr. Corbett said the company was not trying to suppress Dr. Fourney's study but was only interested in making it accurate. "Fundamentally, we had a disagreement about the science, and we attempted" to resolve it, Mr. Corbett said.

In a letter to Neurosurgery, Dr. Chopko, the Vertos consultant, said Dr. Fourney's study was undercut by several methodology flaws.

In response, Dr. Fourney noted that Dr. Chopko's positive 2010 report failed to disclose his financial ties to Vertos; Dr. Chopko, who is Vertos's director of physician education, described the omission as a "clerical error" and said it would be rectified.

The company is currently running a 100-patient trial comparing the effectiveness of its procedure to the effectiveness of cortisone shots.

Dr. Carragee said that what he found most striking about the episode was how Vertos and its allies were attacking Dr. Fourney about the quality of his research when the research being used to promote the company's procedure was also limited and of questionable value.

"The thing that gets me about this is the double standard," said Dr. Carragee, who is also the editor of a medical journal, The Spine Journal. "The positive findings are pushed far beyond their scientific merit and the limitations of it are being ignored."

The Fraying Hospital Safety Net -

Slender and in his 60s, the patient had been short of breath for several days, a result of untreated heart failure causing fluid to build up in his lungs. Despite his wife's entreaties, he had refused to go to the hospital, one of the biggest in the city, and waited at home, gasping, until his appointment at our clinic.
When I asked him why, he looked disgusted. "Have you ever been in that hospital?" he snorted, rolling his eyes. The halls were dingy, he continued; security guards were everywhere, accompanied occasionally by a shackled patient from the local prison; and the waiting rooms were veritable dens of human misery, filled with patients and their families stuck in endless holding patterns.
"Who knows what kind of care I would have gotten in one of those hospitals," he said with a shudder.
My patient was describing a so-called safety-net hospital, a place known for taking in those who have no insurance and cannot afford to pay for their medical care. Safety-net hospitals have long been considered the ugly stepchild of the American health care system. A heterogeneous mix of religious or public hospitals and academic teaching institutions, these medical centers have traditionally faced tremendous budgetary constraints that have forced many to forgo renovations and even routine maintenance to keep their doors open.
The assumption for many patients and doctors has been that the quality of patient care, like the ambience, suffered as a result. And while several early studies comparing patients' outcomesconfirmed those suspicions, a recent study published in the journal Health Affairs validates what those who have actually worked in safety-net hospitals have long believed: Just as you can't judge a book by its cover, you can't assess the quality of a hospital's care by its decor.
Researchers analyzed the outcomes and readmission rates of patients who were admitted to safety-net hospitals in almost 150 cities with one of three common -- and potentially devastating -- diagnoses and compared them with similar patients who were cared for at hospitals with significantly fewer uninsured or disadvantaged patients. They found that for patients with pneumonia, heart failure or a heart attack, there were negligible differences in the quality of care received, with some safety-net hospitals actually achieving better results.
The findings reflect the increasing sophistication over the last decade of research on hospital quality of care. Earlier studies tended to compare patient outcomes in sweeping strokes, lumping the experiences of medical centers situated in densely populated urban centers with those in suburban or rural settings. In this study, however, researchers confined their comparisons to cities. "We were comparing hospitals right across the street from each other," said Dr. Joseph Ross, lead author and an assistant professor of medicine at Yale University's School of Medicine. "It was more of an apples-to-apples comparison."
While it is reassuring to know that safety-net hospitals are capable of delivering excellent care, the study also raises questions. It's not known, for example, why certain institutions, including some of the safety-net medical centers that are more financially constrained, managed to excel while others struggled. It's also unknown how long these results will remain valid, since the Supreme Court ruling on Medicaid expansion in the Affordable Care Act may result in safety-net institutions getting even less compensation than they do now.
But just as the ability to conduct research on hospital quality improves, so will the amount of information available to the public. Seven years ago, Medicare began requiring hospitals to submit information on how they were doing in caring for patients with pneumonia, heart attacks and heart failure, and then publicly report that data on a Web site aptly called Hospital Compare. Since 2005, Medicare has added more measures, among them mortality and readmission rates for certain diagnoses, success rates in preventing certain infections and even some patient satisfaction measures.
Still, how hospitals do with most diagnoses and treatments remains unknown. "We've made a lot of progress," said Dr. Elizabeth E. Drye, one of the study authors and director of quality measurement programs at the Center for Outcomes Research and Evaluation at Yale-New Haven Hospital. "But we still have a long way to go."
The researchers are continuing to work on developing more ways to use patient outcomes to assess and compare hospital quality. "Patients need to have the information that helps them make informed decisions," Dr. Ross said. "They shouldn't have to make assumptions based on what a doctor down the street says or what the building might look like."
He added, "They need to be able to know if it is providing high-quality care and matching the other institution down the block."

Not a Cancer Survivor -

I am not a cancer survivor, and neither are the women in my cancer support group.
Mary feels that cancer was a "blip" in her past that no longer defines her. Diane is a survivor, but not of cancer; she is "a survivor of treatments of cancer."
Patricia and Judy are not survivors, because they are undergoing their first treatments and have no idea how effective they will be. Not a survivor either, Sarah braces herself for the time - not if, but when - the cancer will return. And there is Allison, who, like me, feels put off by the word "survivor"; somehow the term sounds too heroic to claim for ourselves.
In newspaper articles, on TV shows and Web sites, and at social gatherings, many people with cancer define themselves as cancer survivors. The term is meant to be optimistic, suggesting that such people have beaten cancer, defeated the disease. Through a valiant struggle to endure, they have managed to get through the trauma of cancer and emerge on the other side, perhaps sadder but wiser and possibly even better equipped for existence, for they are now attuned to the precious, precarious nature of human life.
While I can only congratulate such people, surely there are others (besides the members of my support group) who cringe at adopting such an identity - and for a number of reasons. Does the celebration of the triumphant cancer survivor cast those who died from the disease in the role of victims who somehow failed to attain the requisite resiliency to overcome it? An American propensity to circulate stories of valiant individuals triumphing over great odds must make people coping with recurrent, chronic or terminal illness feel like duds. And even for those patients with cancers that can be cured, claiming to be a survivor might feel dangerous - like a jinx, a sign of the sort of chutzpah or hubris that could bring about dire reprisals from the powers that be.
Despite all the hype surrounding the "war against cancer," many cancers remain incurable, and the people coping with them need some other terms to describe their sense of themselves. Approximately 40 percent of the American population will get a form of cancer; half of them (roughly 20 percent) do not survive. There must be (and must have been) quite a few people who have known themselves not to be survivors. What should we call patients up against these numbers? If some of us are not cancer survivors before our dying, are we cancer contenders? Cancer lifers, cancer dealers, cancer mavens, grits? As I eagerly await any and all suggestions, I ponder the various lexicons that mystify or vex people trying to keep a sense of self intact after dire diagnoses and sometimes draconian treatments.
If commonly used words pose a problem, so do arcane, ugly and incomprehensible lexicons that may serve the needs of medical specialists, but prove trying for many patients who have no idea what "creatinine" or "platelets," "neutrophil counts" or "ecog status" really mean. In the 2010 novel "The Sickness," by the Venezuelan writer Alberto Barrera Tyszka, a physician whose father is dying of lung cancer "finds the clinical terms unbearable," forming "part of a pretentious, useless dictionary":
neoplasty, exeresis staphylococcal empyema
pleural empyema anastomosis iliocolostomy
biopsy haemostasis prothesis laparotomy
ischemia lithiasis.
Just as incomprehensible, the acronyms resounding in hospital halls and rooms - PIC, CT, BRAC, PSA, GOG, CA-125, NPO, PEG, NG, PTN, PK, HER2, DCIS, LCIS - need to be translated for the ordinary listener, or they degenerate into an unpalatable alphabet soup.
And then consider the sometimes hilariously inappropriate languages of friends and relatives responding to a diagnosis, which happily make the members of my support group laugh.
"What a tragedy for your children," Diane reports one acquaintance exclaiming - an excellent example of what I would call predatory pre-grieving.
Or "You should have gone to M.D. Anderson," which is a nice instance of the know-it-all with information after the fact.
Or "You look great. Just eat your flaxseeds, and you'll be fine," a rejoinder of indefatigable optimism that some of us find off-putting.
Even frequently used rubrics can mask complex realities. Take, for example, our usual categories of "remission" versus "recurrence." Often patients who feel perfectly well believe they are in a remission until their physician informs them that some sort of blood test or body scan proves that the cancer has returned.
The language of remission and recurrence makes it seem as if the cancer is gone, then back. But the hide-and-seek in many case histories suggests that while a number of cancers recede, they do not disappear. Some people live during long periods of contestation in which treatments continue to exert their sway, but the cancer does too.
Perhaps we need a word for that murky in-between zone that a number of us inhabit daily.
Susan Gubar is a distinguished emerita professor of English at Indiana University and the author of "Memoir of a Debulked Woman," which explores her experience with ovarian cancer and the need for better detection tools and treatments.

The Body: Visual AIDS Web Gallery: Art, AIDS and Activism -- Frank Moore

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Wednesday, September 5, 2012

Making medical theatre | University Affairs

In the past few years, Petra Duncan has struggled with everything from schizophrenia to diabetes to Parkinson's disease, and has broken every bone in her body. No, she's not extremely unlucky – Ms. Duncan is a standardized patient educator who recruits and trains individuals to act as simulated patients, also called "standardized" patients, on behalf of the University of Alberta's health sciences council.

With a theatre background and after many years as a volunteer SP, Ms. Duncan stepped full-time into her role three years ago. Today she has more than 300 patients on her roster, including both professional actors and amateurs (SPs are paid for their work).

Most, if not all, universities in Canada with medical and nursing faculties use standardized patients to prepare students for real-life clinical experiences. According to a University of Toronto website, the idea of the SP was conceived in the 1960s and first appeared in Canada at McMaster University.

Ms. Duncan not only hires SPs but also helps them to create scripts and simulated patient scenarios. SPs follow the same script to ensure that student trainees receive a uniform experience – hence the term standardized. SP training includes such skills as how to accurately portray a particular condition or how to react emotionally when given a diagnosis.

Ms. Duncan says SPs often tell her that the experience helps them to deal with their own doctors. "Standardized patients will tell me they've learned to look at the medical system differently, to ask questions," she says. However, Ms. Duncan is careful to counsel SPs to leave their work behind when they finish, as the roles can be emotionally taxing.

Although coordinating and training the SPs takes up most of her time, Ms. Duncan still enjoys filling in when necessary. "I don't do as many roles anymore but I do jump in if someone is sick or if there's a role that doesn't have someone trained for it. I love it," she says.

Tuesday, September 4, 2012

New Voice: Henry Marsh | New Writing | Granta Magazine

Ioften have to cut into the brain and it is something I hate doing. With a pair of short-wave diathermy forceps I coagulate a few millimetres of the brain's surface, turning the living, glittering pia arachnoid – the transparent membrane that covers the brain – along with its minute and elegant blood vessels, into an ugly scab. With a pair of microscopic scissors I then cut the blood vessels and dig downwards with a fine sucker. I look down the operating microscope, feeling my way through the soft white substance of the brain, trying to find the tumour. The idea that I am cutting and pushing through thought itself, that memories, dreams and reflections should have the consistency of soft white jelly, is simply too strange to understand and all I can see in front of me is matter. Nevertheless, I know that if I stray into the wrong area, into what neurosurgeons call eloquent brain, I will be faced with a damaged and disabled patient afterwards. The brain does not come with helpful labels saying 'Cut here' or 'Don't cut there'. Eloquent brain looks no different from any other area of the brain, so when I go round to the Recovery Ward after the operation to see what I have achieved, I am always anxious.

There are various ways in which the risk of doing damage can be reduced. There is a form of GPS for brain surgery called Computer Navigation where, instead of satellites orbiting the Earth, there are infrared cameras around the patient's head which show the surgeon on a computer screen where his instruments are on the patient's brain scan. You can operate with the patient awake The idea that . . . memories, dreams and reflections should have the consistency of soft white jelly, is simply too strange to understandunder local anaesthetic: the eloquent areas of the brain can then be identified by stimulating the brain with an electrode and by giving the patient simple tasks to perform so that one can see if one is causing any damage as the operation proceeds. And then there is skill and experience and knowing when to stop. Quite often one must decide that it is better not to start in the first place and declare the tumour inoperable. Despite these methods, however, much still depends on luck, both good and bad. As I become more and more experienced, it seems that luck becomes ever more important.

I had a patient who had a tumour of the pineal gland. The dualist philosopher Descartes, who argued that mind and brain are entirely separate entities, placed the human soul in the pineal gland. It was here, he said, that the material brain in some magical and mysterious way communicated with the mind and with the immaterial soul. I wonder what he would have said if he could have seen my patients looking at their own brains on a video monitor, as some of them do when I operate under local anaesthetic.

Pineal tumours are very rare. They can be benign and they can be malignant. The benign ones do not necessarily need treatment. The malignant ones are treated with radiotherapy and chemotherapy but can prove fatal nevertheless. In the past they were considered to be inoperable but with modern microscopic neurosurgery this is no longer the case: it is usually now considered necessary to operate at least to obtain a biopsy – to remove a small part of the tumour for a precise diagnosis of the type so that you can then decide how best to treat it. The biopsy result will tell you whether to remove all of the tumour or whether to leave most of it in place, and whether the patient needs radiotherapy and chemotherapy. Since the pineal is buried deep in the middle of the brain the operation is, as surgeons say, a technical challenge; neurosurgeons look with awe and excitement at brain scans showing pineal tumours, like mountaineers looking up at a great peak that they hope to climb. To make matters worse, this particular patient – a very fit and athletic man in his thirties who had developed severe headaches as the tumour obstructed the normal circulation of cerebro-spinal fluid around his brain – had found it very hard to accept that he had a life-threatening illness and that his life was now out of his control. I had had many anxious conversations and phone calls with him over the days before the operation. I explained that the risks of the surgery, which included death or a major stroke, were ultimately less than the risks of not operating. He laboriously typed everything I said into his smartphone, as if taking down the long words – obstructive hydrocephalus, endoscopic ventriculostomy, pineocytoma, pineoblastoma – would somehow put him back in charge and save him. Anxiety is contagious – it is one of the reasons surgeons must distance themselves from their patients – and his anxiety, combined with my feeling of profound failure about an operation I had carried out a week earlier meant that I faced the prospect of operating upon him with dread. I had seen him the night before the operation. When I see my patients the night before surgery I try not to dwell on the risks of the operation ahead, which I will already have discussed in detail at an earlier meeting. His wife was sitting beside him, looking quite sick with fear.

'This is a straightforward operation,' I said, with false optimism.

'But the tumour could be cancerous, couldn't it?' she asked.

'Well, it's possible,' I replied. 'That's why we'll get a biopsy – it's called a frozen section - during the op. If the pathologist says it's not cancerous I don't have to try to get every last little bit of tumour out. And if it's a tumour called a germinoma I don't have to remove the tumour at all and he can be treated with radiotherapy.'

'So if it's not cancer, and not a germinoma, then the operation is safe,' she said, her voice tailing off uncertainly.

I hesitated, not wanting to frighten her but reluctant to make false promises. 'Yes – it makes it a lot less dangerous if I don't try to take it all out,' I said, choosing my words carefully.

We talked for a little longer and then I wished them goodnight and went home.

Iwoke early on the morning of the operation and lay in bed thinking about the young mother I had operated on the previous week. I had operated on a tumour deep in the right side of her brain and somehow – I do not know how since the operation had seemed to proceed uneventfully – I had caused a major stroke, so that she awoke from the operation paralysed down the left side of her body. I had probably tried to take too much of the tumour out. I had probably strayed too deeply into her brain. I must have been too self-confident. I had been insufficiently fearful. I longed for this next operation, the operation on the pineal tumour, to go well – that there should be a happy ending, that everybody would live happily ever after, Neurosurgeons look with awe and excitement at brain scans showing pineal tumours, like mountaineers looking up at a great peak that they hope to climb.and that I could feel at peace with myself once again. But I knew that however bitter my regret, and however well the pineal operation went, there was nothing that I could do to undo the damage I had done to the young woman. I also knew that any unhappiness on my part was nothing compared to what she and her family were going through. I knew too that there was no reason why the next operation should go well just because I hoped so desperately that it would, or because the previous operation had gone so badly. The outcome of the pineal operation – whether the tumour was malignant or not, whether I could remove the tumour or whether it was hopelessly stuck to the brain and everything went horribly wrong – was largely outside my control. I also knew, however, that as time went by the grief I felt at what I had done to the young woman would fade. The memory of her lying in her hospital bed, her mother sitting beside her with her daughter's newborn baby on her lap, would become a scar rather than a painful wound. She would be added to the list of my disasters – another headstone in that cemetery which the French surgeon Leriche once said all surgeons carry within themselves.

As soon as an operation begins, however, the surgeon usually finds that any morbid fear disappears. You take up the scalpel – no longer from the scrub nurse's hand but, in accordance with some Health and Safety protocol, from a metal dish – and full of surgical self-confidence, press it precisely into the patient's flesh. As the blood rises from the wound the thrill and excitement of the chase take over and you feel, more or less, in control of what's happening. At least that is how it seems as the operation starts, and you operate in the blind faith that that is how the operation will continue, although you know that it may not.

My assistant and I stood behind the patient, who was propped upright in the sitting position, as we opened the back of his head, splitting the neck muscles apart and then drilling through the bone of his skull.

'Really cool. Exciting,' my registrar said.

'Well,' I replied, unable to deny my own excitement. 'It's like mountaineering – although it's mountaineering for cowards since it's not our lives that are at risk.'

The man's head opened, the muscles retracted, the meninges incised and reflected – surgery has it own ancient descriptive language – I had the operating microscope brought in and I settled down in the operating chair. With this particular operation you are looking along a narrow crevice that separates the upper part of the brain – the cerebral hemispheres – from the lower part of the brainstem and cerebellum. You feel as though you are crawling through a long tunnel. At about three inches' depth – although it feels a hundred times longer because of the microscope's magnification – you will find the tumour. You are looking directly into the centre of the brain, a secret and mysterious place where all the most vital functions that keep us alive and conscious are to be found. Above you, like the great vault of a cathedral roof, are the deep veins of the brain – the Internal Cerebral Veins, and beyond them the basal veins of Rosenthal and then in the midline the Great Vein of Galen, dark blue and glittering in the light of the microscope, names that inspire awe in neurosurgeons, veins that carry huge volumes of venous blood away from the brain, and vessels which, if damaged, will result in the patient's death.

In front of you is the granular red tumour and beneath it the tectal plate of the brainstem, where damage can produce permanent coma.

On either side are the posterior cerebral arteries that supply the parts of the brain responsible for vision. In the distance ahead, beyond the tumour, a door opened into a distant white-walled corridor once the tumour has been removed, is the third ventricle.

There is a fine, surgical poetry to these names which, combined with the beautiful optics of a modern, counter-balanced microscope, makes this one of the most wonderful neurosurgical operations – if all goes well, that is. The disastrous operation of the preceding week, however, had destroyed much of my It was as though I had lost all my knowledge and experience, and every time I divided a blood vessel I shook with fright.surgical self-confidence and I was as nervous as I had been when I had first become a surgeon. As I approached the tumour there were several blood vessels in the way that had to be cut – one needs to know which can be sacrificed and which cannot. It was as though I had lost all my knowledge and experience, and every time I divided a blood vessel I shook with fright. And yet as a neurosurgeon you learn at an early stage of your career to accept intense anxiety as a normal part of the day's work and to carry on despite it – so eventually I reached the tumour. I removed a minute fragment of it which was then sent off to the pathology laboratory and I sat back in my operating chair.

'We'll now have to wait,' I said to my assistant with a sigh. It is not easy to break off in the middle of an operation and I sat slumped in my chair, full of nervous excitement: longing to get on with the operation, hoping that my pathology colleague would report the tumour to be both benign and operable, hoping that the patient would live, hoping that I would be able to tell his wife after the operation that all would be well.

After forty-five minutes of waiting I couldn't stand the delay any longer and, pushing my chair away from the operating table, leapt out of it and went to the nearest phone – still in my sterile gown and gloves. I rang the path lab and demanded to speak to the pathologist. There was a brief delay and then he came to the phone.

'The frozen,' I shouted. 'What's happening?'

'Ah,' he said imperturbably. 'So sorry about the delay. I was in another part of the building.'

'What the hell is it?' I asked.

'Yes. Well, I'm looking at it now. Ah! Yes, it looks like a straightforward benign pineocytoma . . . '

'Wonderful!' I cried, forgiving him instantly. I went back to the operating table where everyone was patiently waiting.

'Let's get on with it!' I said.

Iscrubbed up again and climbed back into my operating chair, rested my elbows on the armrests and got back to work on the tumour. Each brain tumour is different – some are as hard as rock, some as soft as jelly. Some are completely dry, some pour with blood – sometimes to such an extent that the patient can bleed to death during the operation. Some shell out like peas from a pod, some are hopelessly stuck to the brain and its blood vessels. You can never know for certain from a brain scan exactly how a tumour will behave until you start to remove it. This man's tumour was, as surgeons say, co-operative, and with a good surgical plane – in other words, it was not stuck to the brain. I slowly cored it out, collapsing the tumour in on itself away from the surrounding brain. After three hours it looked as though I had got most of it out.

Since pineal tumours are rare and exciting cases, one of my colleagues came into my theatre from his own operating theatre, to see how the operation was going. He was probably a little jealous. He peered over my shoulder.

The operation continued uneventfully and by the end it seemed that I had removed all, or almost all of the tumour without injuring any of the surrounding vital architecture of the brain. Since the tumour was a benign pineocytoma it probably would not matter even if post-operative scans showed I had left a small fragment of it behind. I left my assistant to close the wound and, leaving the operating theatres, walked the short distance to the wards.

I had only a few inpatients, one of them the young mother I had left paralysed one week earlier. I found her on her own in a side-room. Approaching a patient you have damaged makes the handle of the door You can never know for certain from a brain scan exactly how a tumour will behave until you start to remove it.behind which the patient is lying feel as though it is made of lead. There is a force-field pushing you away from the patient's bed, resisting your attempts to raise a hesitant smile on your face. You are a villain and perpetrator, or at best incompetent, no longer heroic and all-powerful. It is difficult to know what role you now should play. It is much easier to hurry past the patient, looking busy and important, without saying anything at all.

I went into the room and sat down in the chair beside her.

'How are you?' I asked lamely.

She grimaced.

'Not too good,' she replied, pointing with her good right arm to her paralysed left arm and then lifting it up to let it fall lifeless onto the bed.

'I've seen this happen before,' I said. 'And the patients got better, although it took months. I really do believe you will get largely better.'

'I trusted you before the operation,' she said. 'Why should I trust you now?'

I had no immediate reply to this and could only look uncomfortably at my feet.

'But I believe you,' she said after a while, although I think she spoke out of pity.

Iwent back to the theatres. The pineal patient had been transferred from the table to a bed and was already awake. He lay with his head on a pillow, looking blearily around himself while one of the nurses washed blood and bone dust left from the operation out of his hair. The anaesthetists and theatre staff were laughing and chatting as they busied themselves around him, rearranging the many tubes and cables attached to him, in preparation for wheeling him round to the ITU. If he had not woken up so well they would have been working in silence.

'He's fine,' my assistant happily shouted to me across the room.

I went to find his wife. She was waiting in the corridor outside the ITU, her face rigid with fear and hope as she watched me approach her.

'It went as well we could hope,' I said, in a formal and matter-of-fact voice, playing the role of a detached and brilliant brain surgeon – but then I could not help but reach out to her, to put my hands on her shoulders, and as she put her hands on mine and we looked into each others' eyes, and I saw her tears, and had to struggle for a moment to control my own, I allowed myself a brief moment of celebration.

'I think everything's going to be all right,' I said. ■