Phantom limbs

Surya Thapa was putting up a hoarding board at Damauli when suddenly the signage crashed into some electrical wires. Surya was electrocuted, and subsequently had to have his right arm amputated. He was just 25 then.

After he had his hand amputated, strangely, he felt that his hand was still there. He would feel the fingers on his hand twitching and tingling. “I felt like there were ants walking all over my hands,” said he. And when he would look at his hand, he would see that it was not there.

The feeling that an amputated limb is still there is called ‘phantom limbs syndrome,’ and it affects many people with amputations. Dr. Bulanda Thapa, currently Professor of Orthopedics and Trauma, informs that even after the amputation of limbs, it is normal for patients to feel them. “At these times, the patient mostly perceives limb extremities like fingers,” says Dr. Thapa.

Birkha Bahadur Rai from Sindhupalchok, 60, agrees with that. Having had to amputate his right leg to gangrene ten years ago, he still feels that his toes are moving. When his leg was just amputated, the feeling that it was still there was very strong. Now it has reduced, but still, sometimes it is easy to forget about his deformity. Once, it was raining and he got up to bring in some clothes he had left to dry. Suddenly he stumbled and fell because he had forgotten that he did not have a leg anymore. “It must be a force of habit, but it’s the right leg that always moves first,” he explained.

The feeling is strongest when Birkha is asleep or lying down. “It doesn’t cause any problems at all, it’s good to sleep with two legs,” he jokes. But then he awakens and realizes the absence of his leg with a shock. Then the problems start. Sometimes his invisible fingers twitch, sometimes itch and burn, and sometimes ache. “I just massage my stump to get rid of it,” says Rai.

Rai has gotten used to the feelings after all these years. But for some people, the existence of invisible limbs can be traumatic. Anita Neupane, 22, a student, lost both her legs and one hand in an accident seven years ago. The feeling that all these limbs were still present haunted her for a long time. Her doctor told her that it was because she could not accept that she did not have these limbs any more. This led Anita to doubt her own willpower, and she focused on accepting what happened to her. She still believes that she has not fully accepted her situation because she continues to have those sensations, though in a reduced form.

But Dr. Bulanda Thapa is clear that phantom limbs are not simply psychological problems. “Since pain comes from perception, definitely there is psychology involved,” he says, because there is a deep link between physiology and psychology. Even in cases of normal pain, sometimes people keep feeling the pain even when the condition has healed. In such cases, the pain is a result of perception and not just of the medical condition. And with amputation, the case is complicated by severe trauma, which may perpetuate the pain and the phantom limbs syndrome beyond the normal timeframe.

But at the same time, to blame the sensations only on psychology may not be fair on the patient. Dr. Thapa informs that there are three kinds of nerves, sensory, motor, and autonomous. With the amputation of a limb, the motor part cannot function because the limb does not move any more. But the sensory and autonomous nerves are still there, and they are responsible for these feelings. Sometimes, after amputations, these limbs often reorganize, leading the patient to confused perceptions. Such reorganization can even be found in normal medical cases like tooth extractions where a wound in one tooth hurts at another place.

But without their physical existence, the dimensions of the phantom limb are based completely on the amputee’s perceptions. Anita reports that her legs sometimes feel like they have shrunk, sometimes like they have bloated. There have also been cases where the patient feels that the amputated limb is in some other part of the body and not where it originally was. Some patients report distorted phantom limbs as well.

These sensations normally reduce with time, as in the case of Birkha Bahadur Rai. But sometimes, it can get chronic and disturb a patient’s life. Dr. Thapa remembers many such cases. “Once, a patient complained so much of pain on the balls of his feet, when he did not have any feet,” he informed. Despite counseling and medication, his condition did not improve. When pain becomes chronic, Dr. Thapa warns that the patients may get into addictions to forget the pain.

Today, the number of people in Nepal with amputation is rising, with many migrant workers coming home without their limbs, and many individuals nursing wounds from the decade-long conflict. It is important to understand their condition and not dismiss their sensations and mere psychological whimsy for them to feel better.

Dr. Thapa recommends that if the pain becomes chronic and intrusive, counseling and medicines are the best ways to deal with it. Prosthetic limbs are not a solution because they help improve the structure of the limb but do not have its internal composition. So, they don’t help with the phantom limbs. The best course, therefore, to dealing with phantom limbs is medical counseling and medications which can gradually help the patient accept their condition as well as live with it in daily life.

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Dr. Shambhu Shah is Senior Resident at Grande hospital. Having specialized in orthopedics for his Masters degree, he is currently working as an orthopedic surgeon.

Excerpts from an interview with him on phantom limbs:

Is phantom limbs syndrome a psychological condition or a physiological one?

It’s a psychological manifestation of a physical absence. When a limb is amputated, there are three kinds of possibilities: there may be stump pain, which is clinically manageable; phantom limb sensations, which don’t cause much trouble and go away with time; and phantom limb pain, which causes problems.

Why do amputees continue to feel the limbs that aren’t there?

The sensory cortex in our brain has a map of our body. And this map is hardwired. When a limb is suddenly amputated, the brain is still working on the old map, and has a hard time adjusting to the change. Phantom limb sensations may last for 40-50 years.

What can be done to cure phantom limb pain?

There’s no surefire treatment that can fully cure this pain. In severe cases, there are medications. We use counseling and therapy, the point of which is to ensure that the brain knows of the limb’s absence. Massaging the stump often helps, because then the brain becomes aware of the existence of the stump.

Prosthetic limbs don’t help with this syndrome because they don’t connect to the muscles and nerves. In the West, electric prosthetic limbs are available. They actually connect to the muscles, and a few hours of daily use has been known to reduce pain. But they aren’t available in Nepal, and are also very expensive. So for now, therapy is the best course.

Published in Republica on July 4