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Apotemnophilia or Body Integrity Identity Disorder: A Case Report Review Bou Khalil R. and Sami Richa International Journal of Lower Extremity Wounds published online 21 October 2012 DOI: 10.1177/1534734612464714 The online version of this article can be found at: http://ijl.sagepub.com/content/early/2012/08/17/1534734612464714
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464714 International Journal of Lower Extremity WoundsBou Khalil and Richa © The Author(s) 2011
IJLXXX10.1177/1534734612464714The
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Seminar Review
Apotemnophilia or Body Integrity Identity Disorder: A Case Report Review
The International Journal of Lower Extremity Wounds XX(X) 1–7 © The Author(s) 2012 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/1534734612464714 http://ijl.sagepub.com
Bou Khalil R., MD1,2, and Sami Richa, MD, PhD2,3
Abstract Apotemnophilia or body integrity identity disorder (BIID) denotes a syndrome in which a person is preoccupied with the desire to amputate a healthy limb. In this report, we review the available case reports in the literature in order to enhance psychiatrists’ and physicians’ comprehension of this disorder. A search for the case reports available via MEDLINE was done since the first case report published by Money et al in 1977 till May 2011, using the following terms: apotemnophilia, selfdemand amputation, body integrity identity disorder, and BIID. In all, 14 case reports were found relevant to our search.The desire to amputate one’s healthy limb seems to be related to a major disturbance in the person’s perception of one’s own identity, where limb amputation can relieve temporarily the patient’s feeling of distress without necessarily and uniformly adjusting the patient’s own identity misperception. More investigations are needed in this domain in order to develop noninvasive treatment strategies that approach this aspect of the patient’s distress within a globalist perspective. In addition, the health professionals’ awareness regarding this disorder is required to ensure professional management of patients’ suffering. Keywords apotemnophilia, body integrity identity disorder, BIID, self-harm, amputation
The term apotemnophilia (from ancient Greek, “love to cut”) was introduced by Money in 1977.1 It denotes a syndrome in which a person is preoccupied with the desire to amputate a healthy body part, especially one’s own arm or leg. Patients described first had intense and intrusive thoughts to amputate a lower extremity. These thoughts were related to sexual fantasies and sexual arousal. The same sexual fantasies and arousals may be directed to other people who miss a limb: this is called allo-apotemnophilia and is also described as acrotomophilia or deformation fetishism.1 The desire for limb amputation gained attention when a Scottish surgeon in 1997 and 1999 performed amputation on 2 patients. He later considered that the patients’ lives had been transformed by losing a limb. The patients were delighted with their new state.2,3 In addition, discussions of the phenomenon in magazine articles, books, television documentaries, and Internet sites have made the disorder more widely known under the name body integrity identity disorder (BIID).4,5 Patients suffering from BIID have a mismatch between their actual and perceived body schema, and they feel that being an amputee is a necessary and important aspect of their identity.4,5 A study done by First4 showed that 87% of 52 people with BIID felt sexually drawn to amputees, and nearly one-third had at least 1 further paraphilia (transvestism, fetishism, masochism, or pedophilia). Also, 9 patients had an arm or leg amputated, with two-thirds using methods that put themselves at risk of death. The most common reported reason for wanting
an amputation was the person’s feeling that it would correct a mismatch between his or her anatomy and sense of true self. For those who were treated with psychotherapy or medication, there was no change in the intensity of the desire for amputation. The 6 people who had an amputation at their desired site reported that following the amputation, they felt better and no longer had a desire for an amputation.4 The similarity between men’s desire for castration and BIID is a controversial topic.6 Medical ethicists, when they discuss the controversy about elective amputations of healthy limbs, have to bear in mind 2 issues: on one hand, the principle of autonomy is used to argue for a right to modify the body, and on the other, the autonomy of BIID patients is doubtful.7-13 Possible neurological explanations were proposed for BIID, including a dysfunction in the patient’s superior parietal lobule, leading to an uncoupling of the construct of one’s body image from how it physically is. Inadequate activation of the right superior parietal lobe during tactile skin stimulation of the sites above and below the desired amputation line have 1
Psychiatric Hospital of the Cross, Jalledib, Lebanon Saint Joseph University, Beirut, Lebanon 3 Hotel Dieu de France Hospital, Beirut, Lebanon 2
Corresponding Author: Bou Khalil R., Psychiatric Hospital of the Cross, PO Box: 60096, Jalledib, Lebanon Email:
[email protected]
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supported the hypothesis that the sufferers can feel the limb in question being touched without actually incorporating it into their body image, with a resulting desire for amputation. The fact that some children with congenitally absent limbs experience phantom-limb sensations supports the hypothesis that there may be a representation of the body in the right superior parietal lobe and that if a particular limb was missing from this representation, the consequence might be a desire for amputation.14-17 Similarities between BIID and male-to-female transsexualism have been described with the consideration that desire for limb amputation may reflect an erotic target location error, occurring in combination with an unusual erotic target preference for amputees.18 Other psychological origins have argued that it might be an attentionseeking behavior or tendency, although the reason behind why it should take this particular form is not clear. Others have proposed that seeing an amputee at a young age could cause this picture to be somehow “imprinted” onto the sufferer’s psyche as the ideal body image.1 It has even been suggested that the supposed phallic resemblance the amputee’s stump bears is the underlying motivator.5,19 Although BIID is a rare condition that has been poorly studied in the medical literature, this disorder could be more prevalent than is currently thought. Patients feel obliged to seek relief without medical assistance because of our lack of understanding of their suffering. Available data on the subject emanate from a very few studies done on groups of individuals at risk of developing such a disorder as well as from clinical case descriptions. In this report, a review of the available case reports in the literature is performed, with the assumption that when all the case reports are reviewed, a better understanding of the disorder might result.
Methods A search for the case reports available via MEDLINE was carried out beginning with the first case report published by Money et al1 in 1977 till May 2011, using the following terms: apotemnophilia, self-demand amputation, body integrity identity disorder, and BIID. A total of 14 case reports were found to be relevant to our theme after the search and after reviewing the references in the publications; 13 publications were in English and 1 in French.
Results A summary of our findings can be found in Tables 1 and 2. A total of 14 cases have been found in the literature. In the following section, we provide a description of and discuss some relevant features described in these studies.
Discussion Although BIID is a rare condition that has been poorly described in the medical literature, it has to be given more
importance for 2 reasons: first, because of the increasing availability of Internet access that could encourage this kind of behavior through facilitating and demystifying the amputation process; second, because medical literature does not provide a clear recognition of the disorder nor does it ethically legalize amputation of a healthy limb or provide an alternative treatment. For these reasons, the disorder should be better described so as to develop further and more specialized treatment strategies. Case reports available from the literature can constitute an important means of understanding the similarities in the clinical presentations and the clinical features that are most frequently reported in patients suffering from this disorder. Intuitively, this data source does not replace the fact that a descriptive study done in a population where BIID could be most prevalent is needed (eg, amputee Internet sites and prosthetics laboratory workers). Additionally, although we have included all the case reports of patients to be suffering from BIID, as reported by the authors of the articles, the diagnosis of this disorder in some cases should be further discussed. For example, in the case described by Bruno,22 the patient presents with the typical clinical course, cognition, and behaviors of patients suffering from BIID, except for the fact that she does not really want to be an amputee. The author describes this patient as being a pretender/devotee as compared to his second case, who corresponds to a “wannabee.” We think that a nosological spectrum should entail both aspects of BIID because the same cognitive core symptoms underlie these different clinical presentations. Whether the patient has attained the level of really desiring to be amputated appears to be dependent on many factors such as stressful life events, culture-related factors, personality traits, and how much pretending alone is sufficient in fulfilling the aims. In another case described by Bruno, the patient has had a psychotic episode and was receiving antipsychotic drugs and mood stabilizers. Her case may correspond to any psychotic or mood disorder, which eliminates the possibility of her suffering from a typical BIID. In fact, the patient presented with a desire for limb amputation possibly at the age of 21 years old, long before she presented with her psychotic episode cited in the article (at 45 years of age). The patient could be theoretically diagnosed to have had BIID before the episode considering that she was nonpsychotic at her first presentation. This information is not clarified in the article. In addition, the patient does not verbalize her desire for limb amputation but may unconsciously desire to be amputated as a call for help and a defense mechanism against psychosis. In fact, her husband reported that she walked normally during her psychotic episode, which plays in favor of this theory. Accordingly, we have reasons to think that in psychotic patients, when the desire for limb amputation is not motivated by a delusion, such as being convinced that there is an inserted device in the limb designated for amputation or thinking that the limb does not correspond to one’s self, this desire is an important defense mechanism against psychosis and contains many features in common with the BIID of
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Bou Khalil and Richa Table 1. Parameters Related to Patient’s History and Clinical Presentation in the 14 Case Reports in the Literature Authors and Reference Money et al (1977)1
Age at Age of Onset Homosexuality of Symptoms Presentation (years) Gender or Bisexuality (years) 13
Gender Identity Disorder or Other Paraphilias
Middle age
Man
Yes
Yes
Money et al (1977)1 11 Middle age Wakefield et al Not 28 18 (1977) determined Beresford (1980)20 5 29 Everaerd (1983)21 8 65 Bruno (1997)22 Teenager 48 Bruno (1997)22 Not 45 determined First (2005)4 8 39
Man Man
Yes No
Yes Yes
Wise and Chandran 13 49 Kalyanam 23 (2000) 14 24 Bensler and Paauw (2003)24; Storm and Weiss (2003)25 Berger et al 10 or 11 Early 50s (2005)26 Sorene et al Not 51 (2006)27 determined Braam et al 9 35 (2006)28 Baubet et al 20 30 (2007)29
Man No Man Yes Woman No Woman Not determined Man No
No Yes Yes Not determined Yes
Man
No
Yes
Man
No
Yes
Man
No
Yes
Man
Not determined No
Yes
Woman Not determined
No
Man
nonpsychotic patients. Finally, the case described by Wise and Chandran Kalyanam23 is also intriguing because the patient desired to amputate his penis. The desire for penile amputation corresponds more to a desire for castration than to a BIID.6,30 Although the patient was sexually aroused by photos of amputee women, which could correspond to acrotomophilia, he had no desire for self-amputation of a limb. Another argument against this patient suffering from BIID is that both penile amputation attempts occurred during a depressive state. Of note, the patient had had penile amputation fantasies since he was 13 years old and had never attempted any amputation until the appearance of depressive symptoms. In fact, the presence of a major depressive disorder eliminates the diagnosis of BIID exclusively when the self-amputation thoughts co-occur with depressive symptoms and are resolved by the resolution of depression. This issue has not been clarified in the article’s text.23 According to our review, we can describe BIID as being characterized by the following criteria: 1. Low age at onset of first symptoms: the majority of patients described in the literature had a low age at onset of the first symptoms. In the majority of cases, this was between 8 and 12 years old. 2. Advanced age at presentation: although this is a biased parameter because many patients have already begun to have amputation desires and were
No
History of Defect History of Exposition to in the Limb Desired to Be Amputated Amputees
Positive Family Psychiatric History
Limb Amputated or Wished to Be Amputated
Nocturnal enuresis in his brother No No
Left leg above the knee
Yes
Yes
Right leg Finger and toe
Yes No
Yes No
Left leg Leg One of her legs Arms and legs
Yes Yes Yes
No No No Yes
No No No Not determined Not determined No
Left leg Penis
Both legs Father having paranoid schizophrenia No Not determined No Intellectual deficiency in her brother
Not determined Yes
No
Yes
No
No
No
Both legs and left Yes arm Left hand and Not right leg determined Left leg, 15 cm No above the knee Both legs No
No No No No
in contact with medical teams long before cases were reported in the literature, the majority of these patients have suffered for many years before disclosing their disorder to a health professional or to their family members. These patients’ cases were most frequently reported in the literature when they were 30 to 50 years old. This fact demonstrates the importance of recognizing the psychological suffering of patients suffering from BIID. 3. Predominant male gender: 11 out of 14 cases described in the literature involved male patients. Accordingly, BIID might be effectively more prevalent in men. On the other hand, the male predominance can reflect the fact that men suffering from this disorder are overrepresented in the literature as compared with women because they present with more violent behavior that facilitates their autoamputation. This finding is congruent with the finding of First,4 where only 4 out 52 persons having limb amputation desires were women. 4. No predefined associated sexual orientation: although the first cases described in the literature concerned 2 bisexual men, only 3 cases out of 14 were found to present a bisexual or homosexual orientation. It seems that the disorder is not frequently associated with homosexuality or bisexuality. However, First found a 31% rate of
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Table 2. Parameters Related to Management and Evolution of BIID in the 14 Case Reports in the Literature Self-amputation History
Medical Amputation history
1
Yes
No
Not determined
Possibly psychotherapy
Money et al (1977)1 Wakefield et al (1977)18 Beresford (1980)20
No Yes
No Yes
Not determined Not determined
Follow-up No
No amputation attempts reported, but he felt “depressed” No amputation attempts Not determined
Yes
Yes
No
Not determined
Everaerd (1983)21
Yes
No
Schizoid personality disorder Not determined
Follow-up
Bruno (1997)22
No
No
No
Psychotherapy
Bruno (1997)22
No
No
Mania with psychotic features
First (2005)4
Yes
Yes
No
Wise and Chandran Kalyanam (2000)23 Bensler and Paauw (2003)24; Storm and Weiss (2003)25 Berger et al (2005)26
Yes
No
Yes
No
Major depressive disorder No
Lithium, carbamazepine and risperidone; psychotherapy Anti-OCD, antipsychotic medications; insight-oriented psychotherapy Sertraline 100 mg/d and psychotherapy Follow-up
No amputation attempts reported after 2½ years Improvement in her sex fantasies with amputated men. No data on amputation desire outcome No amputation attempts; evolution of disability desire
Yes
Yes
Borderline personality disorder
Fluoxetine 60 mg/d
Sorene et al (2006)27 Braam et al (2006)28
Yes
Yes
Not determined
Follow-up
No
No
No
Paroxetine 20 mg/d and oxazepam 10-20 mg/d; 30 sessions of CBT
Baubet et al (2007)29
Yes
Yes
DSM-IV cluster B personality disorder; eating disorder
Follow-up
Authors Money et al (1977)
Probable DSM-IV Diagnosis
Treatment
Evolution
No result for psychiatric and psychotherapeutic management; symptom remission after 4 years of amputation Resolution of penile amputation thoughts Improvement of symptoms after 6 months Recurrence of desire after successful amputation; antidepressant diminished but did not eradicate amputation desire Recurrence of amputation desire years after leg amputation Reduction of desire of amputation; improvement in communication with others about the disorder Recurrence of amputation thoughts after amputation
Abbreviations: BIID, body integrity identity disorder; DSM-IV, Diagnostic and Statistical Manual of Mental Disorders, 4th ed; OCD, obsessive compulsive disorder; CBT, cognitive behavioral therapy.
homosexuality and a 7% rate of bisexuality in their sample of persons desiring a limb amputation. These rates are clearly superior to what is found in the general population. This high rate of homosexuality could alternatively be explained by a methodological bias in the way patients suffering from BIID were selected in the study. 5. Association with gender identity disorder and/ or other paraphilias: there is a clear association between gender identity disorder, paraphilias, and BIID. The majority of patients reported in the literature are male-to-female transsexuals, transves-
tites, or are aroused by amputees, by amputees’ photos or images, by prosthetic devices, or even by their own or others’ stumps. The prevalence of gender identity disorder was also evaluated in the study done by First; 10 patients (19%) said that they had feelings of wishing to be of the opposite sex or had the feeling of being in the body of the wrong sex. The majority of these individuals (n = 7) reported some history of cross-dressing behavior (not including those who only crossdressed as part of transvestic fetishism). Of the ten people, 6 reported thoughts of getting sex
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Bou Khalil and Richa reassignment surgery done, and 1 of them did. Paraphilias were present in 29% of the persons interviewed by First.4 6. No pertinent psychiatric family history: although positive psychiatric histories of nocturnal enuresis, schizophrenia, or intellectual deficiency were noted, these findings cannot constitute an explanation for the occurrence of the disorder in the patients described. Psychosocial and familial parameters such as psychorigid parents or parent, poor social relationships, and low- to middleclass socioeconomic status that are frequently deduced from the cases described, can be more relevant to the psychopathology of BIID. 7. No predominant laterality of the limb wished to be amputated: the neurological hypothesis of dysfunction to the right superior parietal lobe postulates that this disorder should manifest more frequently in the left limbs (left arm and leg). In the study done by First, 55% of the persons desired amputation of the left leg. According to our reviewed case reports, there were a large number of patients who desired or provoked right, bilateral, or multiple-site amputations. In concordance with the study done by First,4 the desire for leg amputation was clearly more prevalent than that for arm amputation. The absence of predominant laterality was concretely described in a case report that is unavailable via MEDLINE. Kasten and Stirn31 describe the case of a 48-yearold man, who wished since the age of 8 to 9 years to have an amputation of one of his legs about 10 inches above his knee. Apart from the wish to be an amputee, the patient had no mental abnormalities. The wish for amputation changed during his life from the left to the right leg but related exactly to the same localization of the body. This was, according to the authors, a contradiction to the theory that BIID patients suffer from a disintegration of a specific part of their body in their mental body representation. They conceptualized the case by an idealization of being one legged.31 8. Association with a history of exposition to other amputees during childhood: more than half of the patients described having been in contact with an amputee during their childhood. For 56% of patients interviewed in the study done by First,4 their symptoms began soon after they were exposed to an amputee. This could be one of the predisposing factors to the development of the disorder because these patients always point to the exciting aspect of how those amputees managed, while they seemed happy, to overachieve in many activities in life despite their handicap.
9. No association with trauma or defect to the limb desired to be amputated: although the first cases, described in the literature contained a history of trauma or defect to the limb desired to be amputated, this factor was not found in the subsequent reports associated with BIID. As a matter of fact, the relative frequency of bilateral or multiplesite amputations play against this association. In addition, the desire for amputation of a healthy limb as is described in the definition of BIID should not mean that the limb must be organically healthy. Many patients suffering from BIID started to manifest this syndrome after having experienced a somatic problem in one of their limbs and subsequently noticed the high level of attention that they received. In fact, their interest in amputating the affected limb in the future was chronically maintained independently of whether the limb remained organically altered. Surgically speaking, their limb should not present an indication for amputation but can manifest organic alterations that may be primary, secondary, or unrelated to BIID. 10. Frequent self-amputation behavior: according to First,4 27% of the persons interviewed for having a limb amputation desire reported having had a surgical or self-inflicted amputation. In only 4 cases reported in our literature review, patients never tried to self-amputate the limb they have desired to amputate. In the other cases, patients usually try to tourniquet their limbs, sever them with sharp objects, shoot at them, or put them in ice. This reflects in part the distressing nature of the disorder and the patients’ feeling that they will not obtain relief from their distress with medical management or that they will be judged negatively if they disclosed their distress to others. Of note, the medical amputations reported in the majority of the cases (except for the cases described by Dyer et al2) were done after patients had autoinflicted severe irreversible damage to the limb they wished to amputate. 11. Possible association with personality disorders: although it is obvious that we cannot determine the psychiatric comorbidity associated with BIID from reviewing the possible DSM-IV (Diagnostic and Statistical Manual of Mental Disorders, 4th ed) diagnoses evoked in a review of 14 case reports, we can at least confirm the fact that patients described in these cases were not psychotic or depressive (except for some cases4,22) but, in some reports, manifested features of DSM-IV cluster B personality disorders, such as borderline personality disorder.
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12. Treatment with antidepressants and cognitive behavioral therapy (CBT): according to our litreview, the most frequent psychophartreatments administered to patients suffering from BIID were selective serotonin reuptake inhibitors. These agents served to reduce the distress associated with the desire of amputation but were not efficient in eradicating it. CBT used in 1 case improved the patient’s distress, behavior, and communication with his surroundings concerning his disorder. Patients who were not amputated did not report an improvement or resolution of symptoms with time. In the study done by First,4 6 out of the 9 patients who were amputated reported that they felt better and had no desire for amputation. In our case report review, among 10 cases of patients who received surgical or self-inflicted amputations, 3 had a recurrence of the desire of amputation with time. This suggests that in some cases, limb amputation does not seem to be an efficient solution for the disorder. BIID is a poorly studied psychiatric disorder that is not well known by health care professionals. Many BIID sufferers are misunderstood by their therapists. They are worried that health practitioners and therapists will contact the medical officer to get them hospitalized in a mental institution in order to ensure their self-protection. Only 40% of health care professionals who participated in a study correctly identified a case study of a patient with BIID.32 The desire to amputate one’s healthy limb seems to be a chronic disorder related to a major disturbance in the person’s perception of his or her own identity and body image, where limb amputation can relieve temporarily the patient’s feeling of distress without necessarily rectifying the patient’s own identity misperception. The desire for limb amputation is compulsive in its nature and can be accompanied after amputation by a feeling of relief. Recurrence of symptoms could be subsequently noticed in some cases. CBT and selective serotonin reuptake inhibitors are the only noninvasive therapies that have been used until now. Prospective comparative studies evaluating the long-term outcome of surgical amputation in patients suffering from BIID cannot be performed because of important ethical considerations. In the absence of evidence-based treatment strategies for patients suffering from BIID, noninvasive treatments should be considered preferentially over invasive surgical treatments. It is important that health professionals are aware of this disorder if professional management of patients’ suffering is to be instituted as early as possible, before self-amputating behavior provokes irreversible damage to the concerned limb.
Declaration of Conflicting Interests The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding The author(s) received no financial support for the research, authorship, and/or publication of this article.
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