The Man Who Couldn’t Stop (24 page)

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Three months after his surgery, Mr V seemed to be doing well – that was all the follow-up that his surgeon reported. But there are concerns about the long-term impact on patients given these kinds of procedures. In a 2003 editorial in the scientific journal
Acta Psychiatrica Scandinavia
, titled ‘Psychosurgery for Obsessive-Compulsive Disorder – Concerns Remain', the clinical neuroscientist Susanne Bejerot warned that not enough is known about possible side effects. ‘There is no doubt that neurosurgery can dramatically reduce obsessions and compulsions,' she wrote. ‘The question is to what price.' Neurosurgery for mental disorders, she concluded, should only be allowed in controlled research settings – exactly what Fulton had urged in vain for lobotomy.

In 2008, a group of psychiatrists and neurosurgeons published a rare analysis of the long-term effects of stereotactic surgery for OCD. They tracked down all twenty-five patients (fourteen women and eleven men) who had a capsulotomy at the world-class Karolinska University Hospital in Stockholm between 1988 and 2000. (That is an important difference from lobotomy: the numbers of people involved are much smaller). Nine patients were classed as in remission, but only three of these showed no adverse effects. Ten patients were considered to have significant problems with mental ability or function. The more brain material they had lost in surgery, the worse they were. The team concluded that capsulotomy is an effective way to treat OCD, but carries ‘a substantial risk' – and one larger than previously assumed.

Against these risks and warnings, neurosurgeons have to balance the impact on quality of life of OCD left unchecked. Life with a Yale-Brown score in the high 30s is no life at all. OCD may not provoke suicide, but plenty consider it. And some people with OCD who have improved after surgery are keen for others to try it too.

Gerry Radano was a cheerleader for psychosurgery. A former flight attendant, Radano developed severe contamination OCD when pregnant with her second child. Drugs and therapy did not work. Numerous psychiatrists told her she could not be helped. A decade on, she had lost the career she had wanted since she was a little girl and her husband walked out. Radano was selected by scientists at Brown University in Rhode Island for a new and experimental type of capsulotomy. Rather than physically drill into the skull, the surgeons used technology called gamma knife surgery. These machines – invented in the 1950s and common in the treatment of cancer – use radioactive cobalt to generate 200 beams of gamma radiation.

Alone, the streams of radiation are harmless, but focused to combine at a specific site in a tumour, or in the brain, they sizzle where they cross and fry surrounding cells. It's called non-invasive brain surgery, if a technique that burns holes in the brain can ever be non-invasive. In November 1999, Radano was treated for OCD with a gamma knife. She was the first to persuade her medical insurers to meet the $30,000 cost of the surgery. And she was the first to write a book, in which she described what she calls a miraculous recovery. Radano no longer talks publicly about the gamma knife procedure. The Brown University team put its work on hold in 2011 to investigate why several patients developed brain cysts, though it hopes to restart. The procedure is still done elsewhere.

Just as accidental damage to the brain can trigger OCD, so, in very rare cases, accidental damage can remove it. A 44-year-old woman in Iran was freed of severe obsessions and compulsions she had suffered since a teenager when she banged her head in a car crash. And a Canadian student called George inadvertently cured himself of his OCD when he tried and failed to commit suicide. Driven to desperation by his obsessions, George put a rifle in his mouth and pulled the trigger. The bullet did not kill him but it did give him a successful leucotomy. Do not try this at home.

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Functional neurosurgery is not the only treatment of last resort for OCD. Other people have metal wires planted into their brains, attached to a battery that sends through them a powerful electrical current, which changes the way the surrounding neuronal circuits communicate. Called deep brain stimulation, the therapy arrived in the late 1980s, when it was found to reduce tremor in patients with Parkinson's disease. Electrical stimulation seems to reduce the seizures in epileptic patients too. By the early twenty-first century, electrical wires in the brain were considered a form of reversible capsulotomy, and tried for depression and OCD. They have also been used to tackle obesity, alcoholism, drug addiction, anorexia and Tourette's.

Deep brain stimulation has a history as rich and controversial as lobotomy. Electrical modulation of the brain was recommended by Scribonius Largus, court physician to the Roman emperor Claudius, who suggested in
AD
46 that a live electric fish be applied to the head of a patient who suffered a headache. It would fall to another former protégé of the lobotomy pioneer John Fulton to show that electricity could do a lot more to the brain than that.

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Jose Delgado was born in 1915 in Ronda in the mountains of western Andalusia. He studied medicine at the University of Madrid and worked as a doctor for the Republicans in the Spanish civil war against Franco. In 1946 he won a fellowship to Yale University, and then took a job in the university's physiology department under John Fulton. Interviewed in 2005, Delgado said he had been determined to undermine his mentor's work on lobotomy. ‘I thought Fulton and Moniz's idea of destroying the brain was absolutely horrendous,' he said. ‘My idea was to avoid lobotomy, with the help of electrodes.'

Delgado is most famous for a publicity stunt at a bullring in Córdoba, back in Spain. He wanted to demonstrate the power of what he called his ‘stimoceiver' – radio-controlled electrodes he placed in the brain that delivered a sharp pulse of electricity at the touch of a button. In one stunning trial of the technology he allowed a fighting bull to charge him until, when it was just a few feet away, he remotely activated the stimoceiver placed in the bull's caudate nucleus. The bull skidded to a halt and Delgado, unhurt, made the front page of the next day's
New York Times.
*

Delgado experimented with people too. In the early 1950s he placed electrodes into the exposed brains of twenty-five patients at a Rhode Island mental hospital, mainly people with schizophrenia and epilepsy. He showed how electrical stimulation of the motor cortex could make people react with involuntary movements. One patient clenched his fist, even when he tried to resist. ‘I guess doctor, that your electricity is stronger than my will,' he said.

Despite Delgado's intention to offer an alternative to lobotomy, he was dragged into a similar and public controversy. Some of this he courted. He wrote of possible two-way communication between the brain and computers, which would sieve neuronal activity and step in to correct abnormal patterns with electrical pulses. He was talking about detection and treatment of epileptic fits, but his rhetoric frequently strayed into the uncomfortable territory of mind and thought control. In 1969 he published a book called
Physical Control of the Mind: Toward a Psychocivilised Society
.

In 1972 any distinction between lobotomy and brain stimulation in the public's eye dissolved when two Harvard researchers, Frank Ervin and Vernon Mark – one-time collaborators of Delgado – published their own book,
Violence and the Brain
. The duo provoked a national scandal with their suggestion that both brain stimulation and psychosurgery might help to calm the violent tendencies of rioters in American inner cities. Robert Heath, a neurosurgeon at Tulane University, fanned the flames further when in 1972 he announced he had tried to reverse homosexuality through electrical stimulation of a gay man's brain while he had sex with a female prostitute.

Debate became so heated that the US Supreme Court weighed in with a series of announcements on whether ‘government programs of thought control' were unconstitutional because they breached the First Amendment's protection of free speech. The court concluded that the state ‘cannot constitutionally premise legislation on the desirability of controlling a private person's thoughts'. In a free society, ‘one's beliefs should be shaped by his mind and his conscience rather than coerced by the state'.

Judges in Michigan used these grounds to halt a 1973 scientific experiment into anger and sexuality. A criminal sexual psychopath committed to a state mental hospital was to have electrodes placed into his brain to probe the reasons for his behaviour. The research team hoped to identify, stimulate and then destroy the brain regions responsible for the criminal's thoughts of sexual violence. The man consented to the experiment on his brain, which was approved by a scientific review committee and a human rights review committee. The court blocked it because it would contravene the convict's rights to freely generate ideas, even those of brutal rape.

In the same year, a Washington, DC, psychiatrist, Peter Breggin, published an influential article in the
Congressional Record
that said Delgado and other scientists who researched brain stimulation were as bad as the now-reviled lobotomists. Those whose thoughts deviated from the norm would be ‘surgically mutilated', he said. Congress launched an investigation into psychosurgery, and Delgado returned to Spain.

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Just like stereotactic surgery, the modern use of deep brain stimulation for OCD has its critics, who argue that experimental treatments for mental illness should be regulated more strictly and that more research is needed to check if they are safe and effective. History, once again, shows that these critics shouldn't hold their breath, or too much hope that stricter regulation will follow.

The National Commission investigation of psychosurgery set up after the badgering of Congress by Peter Breggin reported its findings in 1976. Despite misgivings, the report was favourable. The government, it suggested, should encourage further research. Kenneth Ryan, the chairman of the commission, told
Science
magazine at the time:

We looked at the data and saw they did not support our prejudices. I, for one, did not expect to come out in favour of psychosurgery. But we saw that some very sick people had been helped by it and that it did not destroy their intelligence or rob them of feelings. Their marriages were intact. They were able to work. The operation shouldn't be banned.

Ryan did not endorse Walter Freeman's technique of pre-frontal lobotomy, but gave a cautious green light to the more selective stereotactic surgery such as cingulotomy. Still, the commission was nervous about possible side effects and potential abuse of psychosurgery. If the research was to continue, it said, the United States must make more effort to ensure it was safe. No patient should have psychosurgery, the commission said, unless details of their presenting symptoms, preoperative diagnosis, past medical and social history and – crucially – the outcome of their operation were recorded and stored in a new national registry. Psychosurgery should become a reportable operation, not something that could be done without public and professional scrutiny.

It never happened. Patients still wait for anyone involved to set up such a registry. The calls for caution have, once again, gone unheeded. The surgery, for OCD and other mental disorders, continues anyway. Long live lobotomy.

 

FOURTEEN

Politics and prejudice

The UK parliamentary record
Hansard
notes every word spoken in the House of Commons and the House of Lords since 1909. Winston Churchill's battles as first lord of the admiralty to convert the Royal Navy from coal to oil in the years before the First World War are in there. So is the famous put-down from Labour politician Denis Healey that to be attacked in a speech by Conservative rival Geoffrey Howe was to be savaged by a dead sheep. The compilers of
Hansard
have seen it all. But if they can still be surprised by a political turn of phrase, then Charles Walker probably managed it. In the summer of 2012, Walker, the Conservative MP for the Hertfordshire town of Broxbourne, told the House of Commons he suffered from OCD and had done so for thirty-one years. During a debate on mental health, Walker announced to the centre of British democracy that he was a ‘practising fruitcake'.

He described his compulsions to count and turn off lights four times, and his fears of contamination – he must leave biscuit wrappers throughout the house because of anxiety around bins. He touched also on the darker side of OCD – the terror of thoughts he cannot control. He said:

One is constantly striking deals with oneself. Sometimes these are quite ridiculous and on some occasions they can be rather depressing and serious. I have been pretty healthy for five years but just when you let your guard down this aggressive friend comes and smacks you right in the face. I was on holiday recently and I took a beautiful photograph of my son carrying a fishing rod. There was my beautiful son carrying a fishing rod, I was glowing with pride and then the voice started, ‘If you don't get rid of that photograph, your child will die.' You fight those voices for a couple or three hours and you know that you really should not give in to them because they should not be there and it ain't going to happen, but in the end, you are not going to risk your child, so one gives in to the voices and then feels pretty miserable about life.

Following his speech, Walker received deserved plaudits for his honesty and his bravery, including from the prime minister. People wrote to thank him for raising the issue in such a public way. But he is not the first MP to talk about his obsessions and compulsions. Gerald Kaufman, the former Labour government minister, received a different reception.

At the height of a 2009 scandal over abuse of parliamentary expenses, Kaufman was ridiculed when he blamed (self-diagnosed) OCD for his decision to claim back £220 of taxpayers' money for the purchase of two crystal grapefruit bowls for his London home. He had identical bowls at his constituency home in Manchester, Kaufman said, and his OCD demanded that he repeat the same breakfast each morning: half a grapefruit, a bowl of muesli with semi-skimmed milk and a cup of coffee with a Rich Tea biscuit. Given what we've seen of OCD in this book, we shouldn't jump to conclusions. It's possible that Kaufman's thoughts did demand superior crockery. But it's much less clear why he thought the rest of us should pay for it.