When the brain refuses ownership of a limb: Amputee wannabes

To most of us the thought of an amputation of one of our healthy limbs is horrid. To a selected few, otherwise healthy and undelusional people, an amputation of a certain limb, at a specific level, is a dream come true.


Robert Vickers, in an ABC television program on body identity:
“Before I was ten years old, I knew my left leg somehow ‘didn’t belong’, and that my body would not be as I felt it should be until I had the leg amputated precisely half way up the thigh. For 30 years, this desire led to depression, psychiatric treatment, a suicide attempt and attempts to injure my leg. … Too afraid of rejection and disbelief to discuss my perverted desire even with psychiatrists, I continued to be treated for ‘clinical depression’. I tried to freeze my leg, and while not admitting to my desire, I did plead it to be amputated. I lost autonomy, and endured three months of plastic surgery; at least six treatments of electroconvulsive therapy and was discharged, addicted to high doses of tranquilisers, anti-psychotics and antidepressants. But at the age of 41, desire became obsession and I froze my leg with dry ice, aware I may die or destroy my marriage. I left hospital two weeks later, on crutches, with my wife and my desired stump, and life changed for the better from that day. In the 24 years since, I only regret not doing it sooner.”

For over 30 years there have been case reports in scientific journals of people who have had an overwhelming, lifelong desire to have a limb or several limbs amputated. The term now used for this condition is Xenomelia (from Greek words for ‘foreign’ and ‘limb’), body integrity identity disorder (BIID) and also apotemnophilia. The condition has been conceptualized as a dysfunction in the development of the (physical) sense of self. There is a mismatch between the actual body and the way its owner experiences his or her body, a discrepancy between body and the internal body image constructed by the brain.

Subject 1 from brain function research, reported below:
Subject 1 was a 29-year-old right-handed man who desired a right mid-tibial amputation. He recalled that a ‘strong desire’ for the amputation of his right leg around the middle of his tibia started around the age of 12 years and had been constant since then. He denied a sexual motivation, but stated that rather the
presence of his right leg made him feel ‘over-complete’ and that he simply wanted it ‘gone’. He had cut off the distal phalanx of his right middle finger after reading on the internet that this might alleviate his desire for amputation of his leg. He had no a priori desire to amputate this phalanx and its removal did not have an impact on the strength of his desire for his leg to be amputated. He readily acknowledged that his feelings about his leg were not normal. On neurological examination, he reported that pinprick was, possibly, slightly duller in a stocking distribution from the mid-level of his right tibia down. He also commented that at other times the same area felt ‘more sensitive’ than the other side. A month after visiting us, he irrevocably damaged his right leg with dry ice, thus necessitating a right below-knee amputation.

People with this affliction claim their limbs do not subjectively belong to their bodies and that their physical body somehow does not match the image or idea they have of their body or themselves. It is as if the individuals have failed to incorporate the affected limb into their body image. They claim amputation would make them feel whole or complete or would restore their true identity. The majority of known cases wants an amputation of a major limb as opposed to only fingers or toes, usually the left leg above the knee. For most, the onset of the desire for amputation is in early childhood or at the beginning of the teenage years. Many know exactly where they want their limb amputated, that is, they can draw a line to show where exactly they feel the leg stops belonging to their body. For most sufferers, this line stays constant over time. Some people claim they have normal sensation in their affected body part but others not. For some the desire for amputation is described as chronic and constant in strength but for others it slowly progresses with age. Just to be clear, these people are not delusional or psychotic, they know that their affected limb belongs to their body, but do not experience it as their own.

From christomat1 on a website forum for people with BIID:
Living with BIID is extremely frustrating! Society does not accept those of us with BIID and we are left to deal with it ourselves. The condition is so extreme that the medical profession can’t seem to deal with it. A large percentage of mental health professionals have never even heard of BIID, and if they are unaware of BIID, how can they even begin to understand it, let alone treat it? It seems that surgery is the only way to cure BIID. I know from years of experience of having had to live with BIID that you can’t open up to others about what you have and what you need. It’s too embarrassing and people tend to have a negative reaction to it. They just don’t understand! I have to say, it is NOT a mental disease. I am sure I was born with BIID. … I was lucky enough to find a surgeon who performed the amputation that freed me from the BIID torture I had endured for years. I’ve been an amputee for a while now, and the amputation surgery cured my BIID. It was such an exhilarating relief to be totally free of that day-to-day torture that was caused by BIID. I was very lucky to get my amputation and get my BIID resolved permanently. I now have a life worth living! I am extremely happy and at last, content, to be the real me.”

The rubber hand illusion
This all sounds a bit fantastical. We live in our bodies and most of us feel that our sense of our body is correct and fixed. This is not so. The Rubber hand illusion shows very well how malleable our body image really is. The illusion can in few minutes convince people that they have a sensation in a rubber hand placed in front of them. It is easy to perform and I encourage you to try it. You need a fake hand of some sort, an inflated rubber glove for example, a piece of cardboard and two small paintbrushes. Place the hand on a table in front of you and conceal your real hand behind the cardboard. Now get somebody to stroke and/or tap the fake hand and real hand simultaneously, using identical movements of the paintbrushes. Look at the fake hand while it is touched and Voila! You suddenly feel as the rubber hand is a part of your body. Here is a demo on YouTube from newscientistvideo: http://goo.gl/CWglH.

So why would someone with a perfectly healthy limb want it amputated?

Superior parietal lobule

Exactly how we construct a body image is not fully understood. What we do know is that a variety of disorders of body image often follow damage to the right parietal lobe (neglect, anosognosia, somatoparaphrenia, anosodiaphoria, misoplegia, phantom limbs). The right parietal lobe would therefore be a good place to look for differences between healthy individuals and individuals suffering from BIID. McGeoch and colleagues (2011) used Magnetoencephalography to measure brain functions in 4 individuals with BIID and 4 normal individuals. They found reduced brain activity in the right superior parietal lobule following tactile stimulation of the affected limbs. The authors concluded that the desire to amputate arises from a failure to adequately represent the affected limb in the right superior parietal lobule. Because the part of the cortex that handle sensory information is intact, people with BIID see and feel the affected limb. However, the inner map of the body (body image) constructed in the superior parietal lobule is inadequate, resulting in a conflict between the map and the sensory input, i.e. the sufferers see and feel a limb that is not incorporated into their body image.

Video from YouTube on voluntary amputation:

Blanke, O., Morgenthaler, F. D., Brugger, P. and Overney, L. S. (2009). Preliminary evidence for a fronto-parietal dysfunction in able-bodied participants with a desire for limb amputation. Journal of Neuropsychology, 3(2), 181-200.

First, M. B., (2004). Desire for amputation of a limb: paraphilia, psychosis, or a new type of identity disorder. Psychological medicine, 34, 1-10.

McGeoch, P. D., Brang, D., Song, T., Lee, R.R., Huang, M. and Ramachandran, V.S. (2011). Xenomelia: a new right parietal lobe syndrome. Journal of neurology, neurosurgery and psychiatry, 82, 1314-1319.

Ramachandran, V.S. and McGeoch, P. (2007). Can vestibular caloric stimulation be used to treat apotemnophilia? Medical Hypotheses 69, 250-252.

This entry was posted in Apotemnophilia, Body integrity identity disorder, Superior parietal lobule, Xenomelia and tagged , , , , , , , . Bookmark the permalink.

4 Responses to When the brain refuses ownership of a limb: Amputee wannabes

  1. Herbie says:

    BIID should find a legal solution not have a “gatekeeper,” who is no sufferer himself, to offer an illegal “amputation travel service” to the Phillippines. Just my thoought. What do others think here? I am interested to hear other opinions.

  2. Pingback: Brain tricks: Is this rubber hand really mine? - about-Brains.com

  3. Pingback: The self and the brain » about-Brains.comabout-Brains.com

Leave a Reply