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Tag Archives: surgery

Awareness during surgery can cause long-term harm, says report

10 Wednesday Sep 2014

Posted by a1000shadesofhurt in Uncategorized

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anaesthesia, awareness, consciousness, dissociation, muscle-relaxing drugs, operations, paralysis, sensations, surgery

Awareness during surgery can cause long-term harm, says report

At least 150 and possible several thousand patients a year are conscious while they are undergoing surgery in the operating theatre, according to a report which warns that some people suffer long-term psychological damage as a result.

In the vast majority of cases, patients have been given muscle-relaxing drugs that temporarily paralyse them, preventing them from warning theatre staff that they are awake. It happens most often during caesarean sections under general anaesthetic and during heart surgery.

A three-year investigation carried out by the Royal College of Anaesthetists and the Association of Anaesthetists of Great Britain and Ireland found that usually the experience of awareness was short-lived, at the beginning or end of the operation.

Half of those who were aware of what was happening to them were distressed by the experience, and 41% said they suffered long-term psychological harm. The sensations they experienced included tugging, stitching, pain, paralysis and choking.

Patients described feelings of dissociation, panic, extreme fear and suffocation. Some said they feared they had been entombed, buried alive or were dead.

Prof Jaideep Pandit, consultant anaesthetist at the John Radcliffe hospital in Oxford and one of the authors of the report, said the Royal College and Association had “recognised the problem officially for the first time”.

He said: “For a long time it has been a discussion on the periphery. This is real. We need to understand it and tackle it.”

Not all experiences were traumatising, he said. Some patients spoke of feeling removed from what was happening. The drugs did not cause unconsciousness but made them feel detached. Sometimes they felt this was acceptable, and Pandit said there was an unanswered question as to whether all patients would want oblivion during surgery or whether some might prefer pain-free awareness.

It was vital, however, he said, that patients are told before they have surgery that there is a possibility, however remote, of having some consciousness of what is going on.

Estimates of how often this happens vary, says the report. When patients are asked after surgery whether they had any awareness, one in 600 say yes. But only one in 19,000 will come forward to talk about it voluntarily after the surgery. That would put the numbers at between 150 and 4,500 a year.

The team looked at three million episodes where a general anaesthetic was given in a hospital and reviewed in detail 300 cases of awareness reported by patients.

In 97% of cases, patients received muscle-relaxing drugs as well as the general anaesthetic. This makes it harder for an anaesthetist to be sure the patient is unconscious.

Around 10% of cases were caused by drug errors. In some, the muscle relaxant had been given without the general anaesthetic, which meant the patient was fully conscious but paralysed throughout their operation.

Where that happened, says the report, there were organisational as well as individual errors. “These included ill-considered policies for drug management, similar-looking ampoules, poorly organised operating lists, high workload, distraction and hurriedness,” says the report.

“These patients were severely distressed and severely harmed in the long term,” said Pandit. The report recommends a checklist before surgery, which would require the anaesthetist to line up the drugs they intend to administer and point to each one in turn. Pandit said mistakes “seem to occur in a highly pressured environment”.

 

Special report: Intersex women speak out to protect the next generation

01 Sunday Dec 2013

Posted by a1000shadesofhurt in Uncategorized

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adults, androgen insensitivity syndrome (AIS), atypical genitalia, Children, chromosomes, disorder of sex development (DSD), gender, hypospadias, Identity, internal sex organs, intersex, operations, support, surgery, treatment, Young adults

Special report: Intersex women speak out to protect the next generation

It has taken Holly Greenberry, Sarah Graham, Dawn Vago and Elizabeth Jo Roberts years to go public with their stories. Born into a world that insists on dividing people into two sexes, they did not always know how they fitted in. They were born to typical families in typical areas of Britain, but none of them developed into typical male or females. They are intersex.

An estimated one in 2,000 babies is born with an intersex condition or a (controversially named) disorder of sex development (DSD), which means that they are born with a reproductive or sexual anatomy that does not fit the typical definitions of female or male. This can include atypical genitalia, chromosomes or internal sex organs.

The women argue that their very existence has been “eradicated” by British society. Generations of children have been operated upon to “normalise” their genitals or sexual anatomy, while official documentation, from birth certificates to passports, requires a male or female box to be ticked.  They argue it’s one of the last “human rights taboos” in the western world.

The women have a type of androgen insensitivity syndrome (AIS), which means they have XY chromosomes, but are partially or completely insensitive to testosterone – they are all infertile.

The group has come together to launch a campaign, calling for the Government to urgently review the way intersex people are treated. Following on from Germany’s decision to allow newborn babies to be registered as neither male nor female, their recommendations include the option to leave the sex on British birth certificates blank, measures to protect babies or young people from irreversible and non-consensual treatment and surgery, better emotional support and increased education.

“We are at a tipping point,” said Greenberry, co-founder of Intersex UK. “Most intelligent human beings would be completely surprised and utterly dismayed at the civil inequality and human rights abuses that healthy intersex children and young adults are facing.”

She added: “We need to sit around the table with the Government because we have lived through it. We are positive role models, and professional and intelligent women, who want to represent the needs of children so that the problems we experienced aren’t replicated.”

In the 1960s, it became the norm to operate on children with atypical sexual anatomy at a young age. Doctors assigned the child’s gender and operated to reinforce it. Although attitudes started to change around the turn of the millennium, and clinicians say they have moved to a more “multi-disciplinary” approach, there is still no record of the number of operations carried out, according to Professor Sarah Creighton, consultant gynaecologist at University College London Hospitals.

This year, the UN Special Rapporteur on Torture condemned non- consensual surgery on children to “fix their sex”, saying it could cause “permanent, irreversible infertility and severe mental suffering”.

XXXora, a 33-year-old intersex artist from London, who supports the women’s campaign, refused an operation. She was born with ambiguous sex organs and raised as a boy, but describes herself as “super-feminised from the beginning”. She said: “I never had surgery or hormones. We talked about it, but then I wouldn’t be me. I don’t want to morph into a blue or pink box; I want to stay in my silver box.”

But the campaign is not all about surgery. Certain intersex people, such as Greenberry, are struggling to correct the sex marked on their birth certificates, which makes it impossible to marry and more difficult to adopt children.

Lord Wilf Stevenson, opposition whip and former special adviser to Gordon Brown – who has a more common DSD called hypospadias – supports the campaign and has raised concerns with ministers. “The issue is that the current law has been overtaken by medical technology,” he said.

There is also a need to provide long-term emotional support for intersex people. Ellie Magritte (not her real name), the mother of a girl with AIS and a member of the support group DSD Families, said adults “need and deserve much greater investment in adult DSD care, focusing not on gender, genitals and genetics, but on health, wellbeing and happiness”. She said not all people with a DSD define themselves as intersex, but added: “The main challenges for families and kids is the social context in which we live with these conditions.”

Pia Clinton-Tarestad, head of specialised commissioning at NHS England, said that the NHS is “working to assess the services we commission for intersex people”, and that it understood that “issues surrounding the timing of, and consent to surgery, are controversial”. She added that best practice involves “co-operation and agreement” between child, parents and a multidisciplinary clinical team.

Holly Greenbury

When Holly Greenberry was born, almost four decades ago, doctors spotted a degree of sexual ambiguity. She has XY chromosomes, but also partial androgen insensitivity syndrome, leaving her partly insensitive to testosterone. She was assigned a male sex on her birth certificate, but she did not develop secondary male characteristics during puberty. She knew her gender was female and underwent treatment and surgery throughout her teens. Now, the businesswoman, from south-west England, is in the process of adopting a child. Because she is unable to change her name or sex on her birth certificate, adoption is harder and marriage impossible.

“I’ve never been completely male nor completely female in my genetics. I didn’t masculinise the way a male was expected to, and my body feminised in certain areas. I didn’t have the words to express myself; I didn’t know how I fitted in. It left me feeling really isolated and, while I tried to identify as male, I couldn’t do it. It was like having a series of repetitive panic attacks. Surgery was horrifically damaging and led to huge number of follow-up surgeries. It all could have been prevented if there had been more medical understanding and if there had been less haste in trying to guess which label best fitted. I should have been allowed to be an ambiguous teenager with the freedom to express my natural gender.”

Dawn Vago

Thirty-three years ago, when Dawn Vago was born, she looked like a typical baby girl. But when she was a young child, doctors told her parents that she had testes which would have to be removed. The married singer and programme director from Warrington, Cheshire, is genetically XY and has complete androgen insensitivity syndrome, which means she is totally insensitive to testosterone. She has been on oestrogen replacement therapy since she was 11.

“The doctors told my parents there was no one else in the UK with this condition. I felt alienated from all of my classmates. I always identified very much as female, but had issues accepting myself. When I first read my file and saw my diagnosis, my world completely exploded. I found a support group and all of a sudden, felt like I wasn’t alone. The moment of joy turned into anger. I was in my early twenties and had spent my whole life and childhood feeling alienated. I realised that it doesn’t have to be this way.

“The doctors told my parents that they should push me into a career and make me become a busy woman, so maybe I wouldn’t have time to settle down and have a family. They said I would find it very difficult to find a partner. Two and half years ago, when I walked down the aisle to my incredibly handsome husband, deep inside I was sticking a middle finger up to the entire medical establishment. I am very proud of who I am and I love my body, but I hate the journey that I’ve been on.”

Elizabeth Jo Roberts

Elizabeth Jo, a 29-year-old freelance journalist from Edinburgh, was brought up as a girl. At three years old, when doctors discovered undescended testes, they removed them without her parents’ consent. She was told at the age of 10 that she was infertile and, in her mid-teens, that she had androgen insensitivity syndrome, having been born with XY chromosomes. She met other people with intersex conditions for the first time only a few weeks ago.

“My parents told me I couldn’t have children at 10 years old. I took it pretty badly. It’s like when you’re winded and all the air is sucked out of you. It destroyed my adolescence. I got bullied quite a lot. When I was 10 or 11, I was first given oestrogen pills, but I used to forget to take them, so I never really developed significantly.

“I struggled with identity issues throughout my adolescence and even in my twenties. I’ve left it late on in life to meet others like myself. It has been one of the best things I’ve done; emotionally cathartic. I suffered quite heavily from depression. I want to help others to not feel the same way. They don’t have to feel bad about themselves. Social change takes years to happen, but we should be living in a society where people don’t feel bad about their identity because they have chromosomes that are variations on the norm. They should have freedom to express themselves.”

Sarah Graham

Sarah, 44, did not find out the truth about her diagnosis until her early twenties.  The counsellor from Surrey has complete androgen insensitivity syndrome. She presented at birth as a baby girl and was raised as one, but she has XY chromosomes and was born with internal testes, instead of ovaries. When doctors removed them, at the age of eight, they told her they were removing her ovaries to protect her from cancer and  imminent death.

“They should have told my parents the truth about my diagnosis. The lies were enormously damaging to me and affected my life. They put me on oestrogen replacement therapy when I was 12 years old but, if they had left my body intact, I would have produced hormones naturally. Every six months, I was prodded and poked by an army of medical students.

“Once I saw my diagnosis, I felt like a total freak, like I didn’t belong, and was offered no support. I felt like the only person in the world with the condition and that no one would love me. I went into a massive period of self-hatred and self-destruction, which fuelled a drug and alcohol addiction. Children need to be able grow up intersex if they want and parents shouldn’t be so pressured to make a decision. We must be given the space to exist.”

Think of it as a dream, not a nightmare if you wake on the operating table: Incidences of ‘accidental awareness’ are far higher than previously thought

22 Sunday Sep 2013

Posted by a1000shadesofhurt in Uncategorized

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"dysanaesthesia", 'accidental awareness', anaesthesia, awareness, consciousness, operations, surgery

Think of it as a dream, not a nightmare if you wake on the operating table: Incidences of ‘accidental awareness’ are far higher than previously thought

It is every patient’s worst nightmare: that the anaesthetic won’t work… And now a review suggests that bad dreams can come true, after one leading expert found that incidences of so-called “accidental awareness” are far higher than was previously thought.

Professor Jaideep Pandit, a consultant anaesthetist and fellow of St John’s College, Oxford, has warned that the number of patients who are “dimly” conscious – for which read that they can feel that blade and see all the blood – could be very high. That’s the bad news. But tomophobes (people with an extreme fear of surgery) can take heart from the suggestion that being vaguely conscious isn’t necessarily a disaster.

It’s possible that some patients are floating in a “third state of consciousness”, dubbed “dysanaesthesia”, in which they have some awareness of the world around them, but feel no pain or distress. Or so Professor Pandit believes.

He came up with his theory after reviewing existing evidence that found large differences between the number of patients who, when asked, recall awareness while under anaesthetic, and those who report awareness without being asked.

National data released earlier this year, based on an audit for the Royal College of Anaesthetists and the Association of Anaesthetists of Great Britain and Ireland, showed that only one in 15,000 patients had told their doctor that they recalled something while under general anaesthetic; of those, only a third reported any distress. But on closer questioning a much higher number, one in 500, gave an answer that suggested they were dimly aware of something happening after being given an anaesthetic, instead of being out for the count.

“The difference between the incidence of 1:500 and 1:15,000 suggests that even in the rare instances where patients are experiencing awareness, in most cases the sensation is a ‘neutral’ one. What we are possibly seeing is a third state of consciousness – dysanaesthesia – in which the patient is certainly aware of events, but not concerned by this knowledge, especially as they are not in pain.”

A recent study in which 34 surgical patients were anaesthetised and had their whole body paralysed apart from one forearm reinforces this theory. The patients were asked to move their fingers, which a third were able to do. But intriguingly, none of the patients moved their fingers without being asked to.

“The difference between one third of patients who can respond to commands to one in 15,000 who report remembering something, tells us that there must be a different state between full awareness and full anaesthesia,” said Professor Pandit. “Logically, it follows there is a large group of patients who are experiencing something in a neutral way.

“I liken it to a jigsaw puzzle – if being aware is the ability to recognise the image of a jigsaw puzzle, then anaesthesia is something that takes away the pieces. A point comes when you take away so many pieces that you can’t tell what the picture is, but you can still see it is a jigsaw. That’s what I call dysanaesthesia – you can see the pieces but there’s no recognisable image, so you’re not interested.”

Professor Pandit called for more research to be carried out to see if dysanaesthesia could be identified by monitoring brain signals and, if so, whether it could be a warning sign that patients are more conscious than they should be.

Accidental awareness during surgery is the second most common concern raised by patients before operations, and the third commonest cause of litigation against anaesthetists in the UK.

The problem for anaesthetists is that they cannot risk putting a patient to sleep too soundly because that would be far more dangerous.

Tragic end of the boy who was brought up as a girl

13 Tuesday Mar 2012

Posted by a1000shadesofhurt in Gender Identity

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Gender Identity, Hermaphroditism, suicide, surgery

2004:

http://www.independent.co.uk/news/world/americas/tragic-end-of-the-boy-who-was-brought-up-as-a-girl-6170071.html

Two weekends ago, 38-year-old David Reimer told his parents in their shared hometown of Winnipeg, Canada, that although he was going through a rough patch – recovering from the death of his twin brother two years ago and from his separation from his wife – things would getter better very soon. He didn’t explain how.

Now his family knows. On 4 May, Reimer took his own life. While his recent ills surely contributed to the despair, his mother knows there was more to it than that. His death was the final coda to a life that became a world-renowned case study in the perils of tampering with gender. During the span of his life he had been a boy, then a girl and then a boy again. “I thought I was an it,” he once said.

The wrenching story of David (baptised as Brian) Reimer began with a freak snowstorm in 1966. His parents, working-class people from the plains of Manitoba, drove him to the local hospital for a routine circumcision. He was eight months old. But the regular surgeon had not made it in and an assistant took over. She botched the job. A cauterising implement burned David’s penis – and it fell off. A witness later said that when the mistake was made there was a sizzling sound, like a steak being seared.

Left with a child with testicles but no penis, his parents were unsure what to do. Then, one day when the boy was more than a year old, they learned about a doctor in Baltimore who had gained a reputation of helping people of ambiguous gender. His name was John Money and they went to see him.

It was Money, a native of New Zealand and the author of some 40 books on human sexuality, who persuaded them that the best course of action was to transform their son into a daughter. He recommended surgery, including clinical castration, and hormone treatment to turn young Brian into a girl. His parents agreed and the treatment began. Brian became Brenda and long trousers gave way to skirts.

For Money, who had pioneered studies in sexology at Baltimore’s prestigious John Hopkins University, it was an irresistible challenge. He was a main proponent at the time of the theory that was briefly popular in the Sixties and Seventies, that gender identity was not necessarily predetermined in the womb. It was more about environment. In the controversy that still rages today over the balance between nurture and nature in determining our sexual selves, Money was a hero of the camp favouring nurture.

Better still for Money, the Reimer case offered an unheard-of opportunity to prove his theory. The patient had an identical twin brother, who was indisputably male. He had an experiment, therefore, with a readily supplied control subject. Two human beings conceived in the same womb with the same genetic profile. But nurture, with help from the knife and some pills, would demonstrate how their gender paths could be separated for ever.

And all seemed to go well. All remnants of Brenda’s male genitalia were gone and her parents did all they could to raise her as a daughter. All the while, the so-called John/Joan case, expounded with pride by Money, a fine writer and charismatic lecturer, was celebrated by science and sociologists everywhere. The gender-fixing procedure was adopted at hospitals worldwide. And the Money theory was also embraced by the then burgeoning feminist movement as proof that social expectations of gender were misplaced. The male-female axis, they declared, was not set in stone. It was fluid and dynamic.

The John/Joan case also helped inform treatment of hermaphrodites, who are born with genitalia so ambiguous that hospitals cannot determine whether at birth the babies are boys or girls. In the vast majority of these cases, parents are told that their children should be raised as girls. Meanwhile, Money’s reputation continued to grow. Considered one of the world’s leading sexologists, his books included The Breathless Orgasm(1991), Venuses Penuses (1986) and Gay, Straight and Inbetween (1988.)

But things in the Reimer household were not as people imagined. It was only in 2000 that the true story of Reimer’s experience reached a wide public. By then, out of dresses and bras and back in the world as a boy, Brian – by then renamed David Reimer – had decided that enough was enough. The truth had to be told. By going on Oprah Winfrey’s show and collaborating on a book with a well-known New York journalist, he revealed that Money had consigned him to a childhood of humiliation, confusion and misery.

“David was a hero,” said Milton Diamond who collaborated on the first scientific papers to expose the disaster of the John/Joan case. Commenting on his death, he said: “David didn’t give permission for what was done to him. Even though he didn’t have a penis, he still knew he was male.”

It was when Reimer was 13 and in therapy with a counsellor provided by the Winnipeg school system that he learned for the first time what had happened to him. Already he had been stigmatised by fellow classmates. They had seen his ungainly gait, the muscles that, despite the removal of his testicles, had begun developing on his neck and arms, and his lack of interest in boys. “They wouldn’t let him use the boys’ washroom or the girls’,” his mother, Janet Reimer, recalled. “He had to go in the back alley.”

That was when he rebelled, demanding that he be allowed to go through more surgery to restore his manhood. It was a transition that would be traumatic for any person, let alone someone in their early teens. The breasts that had developed because of the hormone injections were removed by mastectomy. And he opted for reconstructive surgery to build back the penis of which he had been robbed after birth.

The debunking of what Money had wrought first began with the publication of the paper written jointly by Diamond and also Dr Keith Sigmundson, who was the supervising psychiatrist for Reimer from the age of eight until 20. Published in the relatively obscure Archives of Pediatric and Adolescent Medicine in 1997, it outlined Reimer’s rejection of being a girl.

“By the time Reimer was 11, the whole experiment was falling apart,” noted Sigmundson. “From that point on he sought out all the surgery. He totally changed how he was presenting himself and struggled with a number of operations. He eventually lived his life as a man.”

Sigmundson added that the case should serve as a caution to those still drawn to the nurture over nature idea. “There are certain immutable things that happen in your chromosomes andin utero that develop the gonads that have an impact. Reimer didn’t adjust well to being a girl at all and began having difficulties at school.”

Most experts today contend that there is no overriding the gender determinants that are in a person before birth. But that does not mean that environment does not play some part. “The Reimer case has taught a lot of people in the field that things are a lot more complex when it comes to gender than people originally thought 30 years ago,” argued Ken Zucker, who is chief psychiatrist at the Toronto Center for Addiction and Mental Health.

“Where we’ve really had a lot of advances is in recognising biology has a predisposing influence on gender identity and gender roles. But the environment is also important.”

Diamond was shocked by the news of Reimer’s death. But he hoped lessons had been learned. “His life was very difficult. I think the legacy is the whole issue of how people identify and see themselves as male and female. It’s not as simplistic as putting people into blue rooms and pink rooms. Certainly our environment makes a difference and how we’re brought up makes a difference. But we come to the game with our own inherent natures and how those things interplay can’t be predicted.”

It was the book, written with Rolling Stone journalist John Colapinto, entitled As Nature Made Him: the Boy who was Raised as a Girl, that brought the calamity of Reimer’s situation to the attention of the world. He was inspired to write it after seeing an account of the Diamond-Sigmundson paper in the New York Times. Colapinto cast Money as the villain of the story, although the doctor, who is now 83, never publicly responded to it. The appearance with Oprah Winfrey coincided with its publication. “I thought the Reimers were just the most dignified, fantastic people,” Colapinto commented in an interview at the time. “I think in a way these wonderful working-class people from Winnipeg just kind of stepped onto the world stage onOprah and were a lesson to us all in dignity and survival and openness and courage.”

“Scientists had just relied on this case as being a precedent for the fact that you could assign the sex and gender to children,” Colapinto added. And his book had a strong impact. “Those who believed that and taught it and based their clinical practice on it, and who actually performed similar procedures, were scandalised.”

The same sense of scandal was what drove Reimer to collaborate with the journalist and expose his pain to the world. He was angry about what had happened to him and by the discovery that Money’s tampering with him was being replicated in clinics and hospitals around the world. He wanted it to stop.

“I was surprised that other people wound up going through what I had, because of my so-called ‘success story’ that wasn’t so much of a success,” he said. “You were expected to wear girl’s clothing and to behave in a certain manner and you were expected to play with girl’s toys.” But he never believed he was a girl. “I thought it was very ignorant for them to think I was no longer a male because my penis was burned off. A woman who loses her breasts to cancer doesn’t become any less of a woman.”

His family is left now to grieve for a loved one who was subjected to such humiliations without his consent. For a while, there had been hope that he had put his life back on the rails. While the years of treatment had given his features the fine lines of femininity, he was widely accepted in Winnipeg as a man once more. He got menial jobs and finally found a wife. He became stepfather to her three children.

The loss of his brother, his family said, hit him hard. His twin had also taken his own life and for the past two years, David had made the pilgrimage to his brother’s grave every day to arrange fresh flowers. Then the wife with whom he had established the traditional male role walked away, with her children. He slumped into depression. Worse came soon after when he lost his job. His mother, Janet, came closer than anyone at the funeral last Sunday to blaming Money for what had happened to her child.

“He was a hero,” she whispered to a reporter. “He showed the doctors, he was a worldwide hero.” Asked why she thought he had finally taken his own life, she responded: “I think he felt he he had no options. It just kept building up and up.” His father, Ron, shook his head when approached by reporters and said he had nothing to add.

Janet, however, tried to pay tribute. “He was the most generous, loving soul that ever lived. He liked music. He liked jokes. He was a very funny guy. He was so generous. He gave all he had.”

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