Patients who lost eye insist they can still ‘see’

San Francisco-Patients who had an eye removed from cancer surgery may experience sensations of seeing out of the missing eye-a phenomenon known as phantom eye syndrome-which can lead to anxiety and depression, according to a recent study.

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“We were surprised by how frequent the symptoms were,” said Bertil Damato, MD, PhD, co-author of the study, which was published in Ophthalmology, the journal of the American Academy of Ophthalmology. “We were also surprised that patients actually felt that they could see reality through the eye that was no longer there.”

Compilation fundus photo showing choroidal melanoma with peripheral hemorrhage in the right eye (Courtesy of Adam Sweeney, M.D., and Divakar Gupta, M.D., University of Washington Department of Ophthalmology)

According to the Academy, the study is one of the largest to examine age, gender, and mood in relation to phantom eye syndrome in patients who underwent eye removal surgery for uveal melanoma.

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More than half (61%) of the study’s patients experienced phantom eye symptoms-such as complex images of people-after enucleation, said Dr. Damato, director of ocular oncology at the University of California-San Francisco. The most common reported symptoms in those with phantom eye were:

·      Vague visual sensations in the enucleated eye (80%)

·      Feeling that they could see out of the eye that was no longer there (46%)

·      Pain (39%)

·      Seeing formed images (20%)

“These were most often triggered by darkness and resolved spontaneously, or were relieved by sleep or distraction,” Dr. Damato explained.

The symptoms occurred daily in 29% of patients, and more than once a week in another 20%.

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Interestingly, the study found that the phantom eye symptoms often started several weeks after the eye was removed, and eventually subsided over time in many, but not all of the patients. The symptoms were also more common in young people.

(Courtesy of UCSF Ocular Oncology Service)

Pain occurred more often in women, as well as in patients whose eye was uncomfortable before the removal, and in those who were anxious or depressed, she said.

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“An unexpected finding is that phantom eye syndrome is a misnomer, because this is not a syndrome but a concordance of symptoms, each with its own demographic and clinical correlates,” Dr. Damato said. “If this had been a syndrome, the different sensations would have shown the same correlations with age, gender, prior pain, trigger factors, and alleviating factors.”

Further surprising was that about one-fifth of the patients found phantom eye syndrome “pleasurable,” Dr. Damato said. However, a similar number of patients were “disturbed” by them, and some patients expressed regret when the pleasurable symptoms ended.

Dr. Damato said she hopes the findings encourage ophthalmologists to warn their patients of phantom eye syndrome prior to eye removal.

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“So that patients with such symptoms do not feel that they are abnormal or that there is something medically wrong with them,” she said.

Additionally, Dr. Damato said before removing a painful eye, the surgeon should remind the patient that pain may persist even after enucleation.

Next: Need for psychologist intervention

“Patients experiencing pain after enucleation may be suffering from excessive anxiety or depression and may therefore benefit from support provided by a health psychologist,” Dr. Damato stressed.

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