New hope for treating phantom pain

“Some days, it has been so painful that it feels as though someone is drilling into my leg,” says Pål Røhnebæk.

He describes how phantom pain can feel on the worst days. That is, pain in the leg that is no longer there.

Most people who have had an arm or leg amputated develop what we refer to as phantom pain. This refers to pain in body parts that are gone or no longer have a functioning nerve supply but that the brain still remembers.

This was also the case for Pål Røhnebæk, even if he felt better after the amputation. The pain was actually worse before.

More than a year ago, he had to amputate his left leg from his knee down. For a long time, he had been struggling with sciatica and nerve pain running down the leg, as well as a painful ankle.

It transpired that he had several fractures in the leg and that he had been living with these for too long. Overall, this meant that amputation became necessary. 

Treating phantom pain in new study

Today, there are limited treatment possibilities for people living with phantom pain. A new treatment is being studied at OsloMet and is showing promising results so far.

“The latest research findings show that the appearance of a seemingly intact leg moving pain-free on the amputated side, even if only on a screen, can lead to a reduction in phantom pain,” says researcher Terje Gjøvaag. 

He is responsible for the study, together with PhD candidate Jens-Christian Trojel Hviid.
The condition can be very painful and uncomfortable and many people live with chronic phantom pain for life. It can also be difficult to treat phantom pain, but the treatment the researchers are working on appears promising.

“The first results form our studies show that as little as one treatment can result in an acute reduction in phantom pain,” says Terje Gjøvaag.

The study uses advanced health technology in the treatment, in which a patient exercises in front of a screen, which tricks the brain into believing that an intact leg is moving on the amputated side without pain (see fact box).

In a new study at OsloMet, researchers are using advanced health technology in the treatment of people with amputation and phantom pain. This is what the screens look like. Photo: Sonja Balci

The body part still exists in the brain

The treatment entails the system initially filming various exercises and movements performed using the healthy leg. 

The system subsequently creates a mirrored version of the body part to “replace” the amputated leg.

The film showing two intact legs is then displayed on a large monitor in front of the patient.

“The patient therefore gets the impression that there are two intact body parts that can both perform normal movements,” explains PhD candidate Jens-Christian Trojel Hviid, who is writing his PhD thesis on the subject.

The same method has also been used for stroke patients.
“You could say that if you have a body part that you haven’t moved for several years, the body part would get stiff and painful. The amputated body part still exists in people’s brains, but it isn’t used,” Hviid says.

“As you carry out the exercises in this treatment, you actually feel as though the amputated leg is able to move without pain.”

Noticing that treatment helps

Over the last two months, Pål Røhnebæk has been one of the participants in the new study at OsloMet. 

He has undergone 16 treatments and this one, in December, is the last one so far.

Peak concentration during exercises

“A lot of it is in the head,” he says.

“I know I don’t have that leg, but when I look at the screen I can still see that the leg and the stump at the knee are doing the exercises. For example, I can flex my toes and pull my sock on.

After treatment, he notices that the leg with the amputated part is less stiff. His movement and stability when he walks in steep terrain have changed.

“I find that the treatment helps alleviate the phantom pain”.

Reducing the need for painkillers

Treatment consisting of exercises has no side effects. This is in contrast to strong painkillers, which carry a high risk of side effects.

“Following amputation, most people use some degree of prescribed pain relief and opiates, which are effective but addictive, are scary,” says Terje Gjøvaag.

The researchers have found that a large proportion of the study participants are reducing their doses of painkillers at their own initiative throughout the treatment, as the phantom pain decreases.

One of the participants told me, for example, that he had spent years feeling as though he had a stone in his shoe. During one of the treatments, they carried out a simulation in which a stone was removed and it worked. He finally got rid of the stone in his shoe and the pain disappeared.

Amputations more prevalent in the elderly

Some people need amputations due to accidents, but the majority are elderly people with vascular disorders. 

Vascular disorders are diseases of the circulatory system, such as decreased blood circulation to the legs. Poor blood circulation to the legs can result in ulcers and infections and, in severe cases, amputation.

“We know that people living with amputated body parts have a lower quality of life than the general population and those who suffer from phantom pain report even lower quality of life again,” says Gjøvaag.

This all affects how independent and active they are in society. 

“It is fascinating to see how much mental and visual training help. The results to date provide hope for further research,” the researcher says.

In 2025, the study will be expanded to include patients who have lost an arm. The study is ongoing and patients with both arm and leg amputations are still being recruited.

Defiance and humour help

Pål Røhnebæk says that there is a lot he needs to relearn with an amputated leg. Among other things, he has to learn to use and live with a prosthetic leg.
It is almost like learning to walk again and to begin with it can feel a bit like walking on stilts.
“But defiance and dark humour have helped me through it all,” he says.
“And the torpedo that drills into my leg is fortunately making fewer and fewer visits. It used to arrive twice or three times a week. But it has been four weeks now since I last experienced it.