It was in the summer of 2023 that Karin lost her right arm from the elbow down. An accident at her then workplace led to an amputation. The wound healed well and after two weeks in the hospital, she was able to go home. But the pain remained.
Since then, I have had a burning and stabbing sensation in my hand and my fingers feel cramped and drawn in, she describes.
Experiencing phantom pain in a body part that has been amputated is common. Approximately 80 percent of those who have been amputated experience it. Especially if the amputation occurs after an accident. The explanation is that even though the body part is gone, the nerves remain. They continue to send signals to the brain and the experience is that the amputated body part hurts.
Pain-relieving medication often doesn't work well on this type of pain. But through virtual reality (VR), patients can take control of the phantom pain, says Kajsa Lidström-Holmqvist, associate professor in occupational therapy at Örebro University, who researches how VR can be used to alleviate phantom pain.
Control over the phantom
The treatment involves tricking the brain into believing that the amputated body part is still present and learning to control it. Electrodes are attached to the stump where a body part has been amputated, and at the same time, they look at an image of the corresponding body part on a screen. By tensing the muscles in the remaining part, the body part on the screen is controlled.
After a few training sessions in front of the screen, patients get a sense of control over the "phantom". For many, the pain decreases, and for some, it disappears completely. Most need to perform the treatment a couple of times a week for a two-month period. Each session is between one and two hours. After that, patients may need booster doses. It's for such a treatment that Karin has traveled from her home in Norrbotten to Örebro.
It's about every third month now, I notice that the effect wears off after a while, but I know that my visit here is followed by a good period, says Linda.
She especially notices the effect during the day when the pain starts to increase in intensity – even when she's not connected to the electrodes.
Then I visualize movements in my phantom hand similar to those I do in the VR program, and in that way, I reduce the increase in pain, which is incredibly helpful.
Requires full focus
She has been able to reduce the strong pain-relieving medication she took initially. It's clear that she is routine and it goes quickly to attach the electrodes and calibrate the muscle tensions with the image of the arm.
I've had patients who were stressed and couldn't focus fully on the task, maybe checked their phone during the time, and then it doesn't work. You need to have total attention on what you're doing, says Cathrine Widehammar, researcher and occupational therapist at Örebro University Hospital.
Exactly what causes phantom pain is unknown, and neither is what happens when it disappears. But researchers believe that the brain learns somehow. This way of tricking the brain was introduced as early as the 1990s. Then, a regular mirror was used where the amputated person mirrored the healthy side during movement. This created an illusion that both sides moved. The method was revolutionary when it came, but even though it alleviated pain, it wasn't as effective as today's further development with VR.
At Örebro University Hospital, they have developed the treatment, and some patients have tested the system at home. Some use electrodes while others only need a screen with an image of the missing body part that performs a series of movements to achieve good results.
30 years of pain
One patient had had phantom pain for 30 years and hadn't been helped by other treatments. Already after the second treatment, his pain decreased, and it continued to decrease at each subsequent treatment. It's fantastic, says Cathrine Widehammar.
In a recent study, researchers have now seen that the treatment has a positive effect on patients' quality of life. Kajsa Lidström-Holmqvist has interviewed patients who have been treated with the new method to find out how their daily lives are affected by the treatment.
For those who got an effect from the treatment, it had an enormous impact on joy and quality of life. You lose your zest for life when you're in pain. Most reduce their activities to cope with what they must do. After the treatment, they tell me that they've started doing things they haven't been able to do for many years, she says.
For Karin, the treatment has been crucial.
I had to fight a bit to get a referral here, but it's worth the trips. The hope is to be able to do it remotely in the future, she says.
Launched in the 1990s and involves the amputated person making movements with the healthy side's arm or leg and simultaneously thinking that they are doing the same with the amputated.
Initially, a large mirror was used where the patient saw the healthy side, and an illusion was created that both sides moved.
