The eye amputated - consequences of eye amputation with emphasis on clinical aspects, phantom eye syndrome and quality of life

Abstract

In this thesis the term eye amputation (EA) covers the removing of an eye by: evisceration, enucleation and exenteration. Amputation of an eye is most frequently the end-stage in a complicated disease, or the primary treatment in trauma and neoplasm. In 2010 the literature is extensive due to knowledge about types of surgery, implants and surgical technique. However, not much is known about the time past surgery.

The purpose of the phd thesis was: To identify the number of EA, the causative diagnosis and the indication for surgical removal of the eye, the chosen surgical technique and to evaluate a possible change in surgical technique in Denmark from 1996 until 2003 (paper I); To describe the phantom eye syndrome and its prevalence of visual hallucinations, phantom pain and phantom sensations (paper II); To characterise the quality of phantom eye pain, including its intensity and frequency among EA patients. We attempted to identify patients with increased risk of developing pain after EA and investigated if preoperative pain is a risk factor for a later development of phantom pain (paper III); In addition we wanted to investigate the health related quality of life, perceived stress, self rated health, job separation due to illness or disability and socio-economic position of the EA in comparison with the general Danish population (paper IV).

The studies were based on: Records on 431 EA patients, clinical ophthalmological examination and an interview study of 173 EA patients and a questionnaire answered by 120 EA patients.

Conclusions: The most frequent indications for EA in Denmark were painful blind eye (37%) and neoplasm (34%). During the study period 1996-2003, the annual number of eye amputations was stable, but an increase in bulbar eviscerations was noticed. Orbital implants were used with an increasing tendency until 2003. The Phantom eye syndrome is frequent among EA patients. Visual hallucinations were described by 42% of the patients. The content were mainly elementary visual hallucinations, with white or colored light as a continuous sharp light or as moving dots. The most frequent triggers were darkness, closing of the eyes, fatigue and psychological stress. Fifty-four percent of the patients had visual hallucinations more than once a week. Ten patients were so visually disturbed that it interfered with their daily life. Approximately 23% of all EA experience phantom pain for several years after the surgery. Phantom pain was reported to be of three different qualities: (i) cutting, penetrating, gnawing or oppressive (n=19); (ii) radiating, zapping or shooting (n=8); (iii) superficial burning or stinging (n=5); or a mixture of these different pain qualities (n=7). The median intensity on a visual analogue scale, ranging from 0 to 100, was 36 [range: 1-89]. One-third of the patients experienced phantom pain every day. Chilliness, windy weather and psychological stress/fatigue were the most commonly reported triggers for pain. Factors associated with phantom pain were: ophthalmic pain before EA, the presence of implant and a patient reported high degree of conjunctival secretion. A common reason for EA is the presence of a painful blind eye. However, one third of these patients continue to have pain after the EA. Phantom sensations were present in 2% of the patients. The impact of an eye amputation is considerable. EA patients have poorer health related quality of life, poorer self-rated health and more perceived stress than does the general population. The largest differences in health related quality of life between the EA patients and the general population were related to role limitations due to emotional problems and mental health. Patients with the indication painful blind eye are having lower scores in all aspects of health related quality of life and perceived stress than patients with the indication neoplasm and trauma. The percentage of eye amputated which is divorced or separated was twice as high as in the general population. Furthermore, 25% retired or changed to part-time jobs due to eye disease and 39.5% stopped participating in leisure activities due to their EAs.