Abstract

Apotemnophilia is a disorder characterized by the intense and long-standing desire for amputation of a specific limb. In recent years the word apotemnophilia has come to be seen to carry pejorative overtones, meaning as it does "a love of amputation" and implying that the condition is a sexual paraphilia. In an attempt to move towards a more neutral term for desiring an amputation McGeoch, Brang and Ramachandran proposed that the desire for an amputation be renamed "xenomelia", which derives from the Greek to mean foreign limb. Another term for the condition is body integrity identity disorder (BIID), but this has come to apply to not only those who desire an amputation but also those who want a range of disabilities including deafness, blindness and a spinal cord injury.

Apotemnophilia (xenomelia) has features in common with somatoparaphrenia. Some apotemnophiles seek surgeons to perform an amputation or purposefully injure a limb in order to force emergency medical amputation. A separate definition of apotemnophilia is erotic interest in being or looking like an amputee. This separate definition should not be confused with acrotomophilia, which is the erotic interest in people who "are" amputees.

Apotemnophilia (xenomelia) was first described in a 1977 article by psychologists Gregg Furth and John Money: "Apotemnophilia: two cases of self-demand amputation as paraphilia." Until recently, the primary explanation for Apotemnophilia was psychological/psychiatric, however recent research suggests that here may be a neurological etiology for this disorder.

Neurological Etiology

In 2008, V.S. Ramachandran, David Brang and Paul D. McGeoch conducted research that suggested Apotmenophilia/Xenomilia is a neurological disorder caused by an incomplete body image map in the right parietal lobe.

The study carried out David Brang, Paul McGeoch and V.S. Ramachandran in 2008 was on two subjects. In 2011 Paul McGeoch et al. published the results of an experiment in which they were able to obtain MEG images of the parietal lobes for four research subjects, all of whom desired amputation. McGeoch and his co-researchers concluded that the images suggest "that inadequate activation of the right superior parietal lobe (SPL) leads to the unnatural situation in which the sufferers can feel the limb in question being touched without it actually incorporating into their body image, with a resulting desire for amputation". The authors noted that the right parietal lobe has long been associated with formation of the body image, and that damage to this region can cause a variety of body image disorders, such as somatoparaphrenia in which sufferers deny ownership of a limb. McGeoch et al proposed that unlike somatoparaphrenia, which can be viewed as an acquired disorder of body image, xenomelia should be seen as a developmental right parietal lobe disorder. This reported abnormality in the function of the right parietal lobe was subsequently supported by an 2013 anatomical study by Peter Brugger's group, which found a reduced cortical thickness of this part of the brain in people who desired an amputation when compared to controls.

In 2011 a group of researchers at the University of Southern California (Brain and Creativity Institute) proposed an alternative neurological hypothesis. These researchers proposed that "individuals with BIID may have a discrepancy between the commands from the motor cortex to the parietal lobe and from the sensory feedback to the same regions in the parietal lobe". This theory was based on the discovery that individuals who desire amputation sometimes experience phantom limbs after amputation. There is also recent research (2017) which suggests that structural hyperconnectivity within the sensormotor system also plays a significant role in xenomelia.

Classifications: Body Integrity Identity Disorder (BIID)

The term body integrity identity disorder was coined in 2005. In a study conducted by Michael First, 52 individuals were administered a structured telephone interview, which helped characterize the altered bodily self-consciousness that culminates in desire for amputation. The use of the term "Body Integrity Identity Disorder" suggests that Apotemnophilia is an identity disorder as defined in the DSM-IV.

Patients diagnosed with apotemnophilia are sometimes classified as being patients who experience body integrity identity disorder (BIID). It should be noted that in a 2014 review of the psychiatric and neurological literature, Anna Sedda and Gabriella Bottini stated that there is no consensus as to the best way to classify the desire for amputation:

Symptoms and Treatment

Apotemnophia / Body Integrity Disorder (BIID) is a is a rare, infrequently studied and highly secretive condition in which there is a mismatch between the mental body image and the physical body. Apotemnomphilia is characterized by an intense desire for amputation of a limb. Currently BIID is not included in the International Statistical Classification of Diseases 11 or the Diagnostic and Statistical Manual of Mental Disorders IV. It is often not known to surgeons, neurologists and psychiatrists. BIID individuals typically avoid healthcare and often act out their desires by pretending they are disabled or perform actual self-amputation.

A 2012 study concluded, based on interviews with 54 individuals, that the main rationale for their desire for body modification (amputation) was to feel complete or to feel satisfied inside. Based on the results of the survey, researchers concluded that psychotherapy was often supportive, but did not help diminishing BIID symptoms. Individuals reported that antidepressants were helpful in reducing depressive symptoms related to BIID, but that antipsychotics were not. Actual amputation of the limb was effective in all 7 cases who had surgical treatment.

Ethics

Surgeons are placed in a difficult situation when apotemnophiles confront them about their situation. A surgeon or a medical professional will have to make the decision between amputating a perfectly normal limb or allowing his or her patients to remain unhappy. Whether the medical professional performs this surgery has not been defined as "allowed" or "disallowed". Although many professionals will agree that a patient's happiness is primarily important, amputating a limb may be out of the question because there is nothing medically wrong with the limb itself.

Research directions

Apotemnophilia has been studied for a number of years to determine whether this disorder is actually neurological or psychological. However, in-depth research related to apotemnophilia and its correlation to the mind and body are still not clear. Recent research has shown small breakthroughs such that apotemnophiles are three times more likely to want removal of a left limb than right, in accordance with damage to the right parietal lobe, and also in concordance with sufferers of somatoparaphrenia; in addition, skin conductance response is significantly different above and below the line of desired amputation, and the line of desired amputation remains stable over time, with the desire often beginning in early childhood. Among a convenience sample of 52 apotemnophiles recruited from internet groups, the great majority wanted a single leg removed, cut above the knee. There are parallels between apotemnophilia as a motivation for body integrity identity disorder and autogynephilia as a motivation for some cases of male-to-female gender dysphoria.

A 2014 review concluded that