An interview with a deep brain stimulation patient: “I’m worried about getting water in the holes in my head”

LiquidLibraryBy Christian Jarrett

Deep brain stimulation is a medical procedure that involves implanting electrodes permanently into the brain and using them to alter the functioning of specific neural networks. A battery inserted subcutaneously in the chest provides the device with power. One application of the technology is as a treatment for Parkinson’s Disease, a neurodegenerative condition that causes tremors and difficulties moving. While the treatment can bring about an impressive alleviation of symptoms, research suggests that Parkinson’s patients often struggle to adjust psychologically. Now a case study published in the British Journal of Health Psychology has provided some of the first insights into what it’s like for a patient to contemplate undergoing surgery for deep brain stimulation, and then to adjust in the immediate aftermath.

Psychologist Virginia Eatough at Birkbeck University of London and her colleague, nurse specialist Karen Shaw from UCL’s Institute of Neurology, interviewed Katherine (not her real name), a 72-year-old Parkinson’s patient, three times: three weeks prior to surgery for deep brain stimulation, then four and twelve weeks afterwards. After transcribing the interviews, the researchers identified three main themes.

The first theme concerned how she made the decision to go ahead with the surgery after the idea was proposed to her by her consultant. Understandably, Katherine was scared of the procedure. Medical staff had encouraged her to speak to her friends and family, but she found that they were so worried that she ended up keeping her own concerns to herself. “Most people’s reaction has been one of slight horror,” she said, “so I’ve been spending my time reassuring them…”.

Katherine also said how she’d been provided with a lot of facts about the intervention by medical staff, but that what she really wanted was a human form of reassurance. “I was looking for confidence [from my consultant],” she said, “and he didn’t give it. He didn’t not give it but he didn’t give it”. Katherine also said repeatedly that she would have liked to speak to other patients who’d gone through the procedure, but that this wasn’t an option.

In the end, after being impressed by the warmth of the surgeon she decided to go ahead with the surgery, in the hope of a breaking through the “dead end” she’d reached with her worsening illness.

The second theme was Katherine’s shifting emotions through the period before and after the operation. She spoke of her fear of her Parkinson’s “engulfing her”, but also her trepidation at the procedure. As it grew imminent, her fear gave way to relief and excitement. “I stopped feeling apprehensive, I sort of gave up, I decided to just let it go,” she said.

Then immediately after the surgery, not detecting any noticeable improvement in her symptoms, Katherine went through a phase of feeling feelings of failure, disappointment and anger. “I felt I’d failed,” she said, “the fact that I wasn’t immediately dramatically different made me feel I’d failed, I had a huge sense of failure.”

But eventually, after returning home, Katherine became more aware of her improvements, and she realised that her doctors, who were pleased with the outcome, hadn’t just been feigning their satisfaction with the outcomes. This realisation made her feel overjoyed, grateful and happy. At the same time, however, she began to feel “slightly cast adrift” and “frightened” at the lack of continuing support.

“The procedure had given rise to considerable emotional fragility,” the researchers said, “indicating the need for psychological support at all stages.”

The final theme concerned “the embodied meaning” of the procedure. Katherine saw it as “odd”, “spectacular” and “strange”, the stuff of fiction. “I’m worried about getting water in the holds in my head,” she said. “I felt my brain had been taken over and God knows what thoughts had been put in it and would I ever be in control of it again and would I know how to handle by new brain?”.

Later she began to adjust. “I try not to think about it,” she said. “… You could go fairly crazy trying to think about having sticks in your head, but then I’ve got two artificial hips and an artificial knee so why am I not worrying about that, it’s the same intrusion and it’s artificial.”

The researchers said their case study showed how the deep brain stimulation experience is “one of considerable emotional and cognitive turmoil”, indicating the importance of “patient tailored discussion, counselling and emotional support”. One practical suggestion they had is for the introduction of a buddy system in which prospective patients are paired with a patient who has already undertaken the procedure. The researchers also emphasised that the interviews demonstrated the need for medical professionals to go beyond providing factual advice. They need to “step outside of their professional role, no matter how briefly, and see how it looks from the perspective of someone like Katherine.”

‘I’m worried about getting water in the holes in my head’: A phenomenological psychology case study of the experience of undergoing deep brain stimulation surgery for Parkinson’s disease

Christian Jarrett (@Psych_Writer) is Editor of BPS Research Digest

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