OCD brain surgery recipient dies of unrelated causes
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By Felice J. Freyer Mario Della Grotta, the Cranston man who became the first American to undergo brain surgery for obsessive-compulsive disorder, died Monday night at Rhode Island Hospital in Providence. He was 40. Della Grotta died of a medical illness that was not related to his psychiatric disorder nor to his brain surgery, according to his psychiatrist, Dr. Benjamin D. Greenberg of Butler Hospital. His wife, Sheri, said he fell ill on Dec. 27 and had been in the hospital until his death.
In February 2001, Della Grotta became the first person in the United States to have electrodes implanted in his brain for the purpose of controlling OCD, in a procedure called deep brain stimulation. The experimental surgery, performed at Rhode Island Hospital with Butler Hospital researchers, was an attempt to quiet the malfunctioning brain circuitry that underlay his extremely severe and disabling OCD. At the request of Della Grotta's family, a fund is being established to support OCD research at Butler Hospital. Checks can be sent to the Mario Della Grotta Memorial OCD Research Fund, Funds Development (attn: Michele R. Berard), Butler Hospital, 345 Blackstone Blvd., Providence, RI 02906. People with OCD have irrational fears or repetitive thoughts, which they seek to calm with compulsive acts or rituals. Della Grotta's OCD, at its height, filled his every waking hour with obsessions and rituals, including cleaning, ordering, counting and calculating. After the surgery, Della Grotta gradually started responding to behavioral therapy. Within a few years his obsessions were taking up about five hours a day instead of 18. He graduated from college and found a job. He also frequently gave talks to professionals and others about OCD and the effects of deep brain stimulation. He was the subject of a Providence Journal multimedia story , "Prisoner of His Thoughts," in December 2006. Since then, Greenberg said, Della Grotta continued to improve and began working on a memoir. He was "an active father" to his two young daughters -- Kaleigh, 7, and Nadia, who will turn 4 on Saturday. "He just loved his family, his kids," Sheri Della Grotta said. Greenberg said that Della Grotta "encountered some discrimination in trying to get back into the work force, but nevertheless he's held several jobs." Last year, Della Grotta spoke at the Frontiers of Science conference at Brown University and traveled to Washington, D.C., to address a symposium on "Brain Pacemakers" held by the U.S. Department of Health and Human Services. "He was someone who had tremendous drive and persistence and strength of purpose," Greenberg said. "I mean, he never gave up. That was inspiring to everyone -- people at this hospital and other patients." Meanwhile, Greenberg is continuing to study deep brain stimulation to treat OCD, with a new clinical trial that gets under way next week. 
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Anyone who is considering any kind of OCD treatment other than non-invasive behavioral treatment ought to ask to speak with former patients for whom it did NOT work.
I have known a couple of people who had treatment done. They are not success stories. One was given the option as an inpatient, without having adequate information about the procedure, side effects, or long term effects such as memory loss.
People who suffer from OCD can be desperate to remove their obsessions, and it is shameless to take advantage of them for the sake of experimentation.
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Due to the severity of the "illness" and the associated risk of suicide some have argued that patients would risk suicide if they were denied surgery.
The long duration of "illness" in itself may induce dysfunctional behavioral patterns not specific to illness that linger after symptom relief.
The dysfunctional patterns of behaviour which develop as a consequence of the mental disorder may be more disabling for the patient than the disorder itself.
This may be another reason for considering surgery for the patient earlier during the course of the "illness".
The doctors should always weigh the functional impairment deriving from the disorder against the risks which the surgery carries. After all, we now live in a time where quality of life issues are as much important or maybe more than life itself.
I think that if the patient has been fully informed about the procedure and is able to understand the risks which the surgery carries and is able to give informed consent, one should take into consideration the will of the patient himself for undergoing such surgical procedures. We can't deny the patient that right.
"If it was possible to become free of negative emotions by a riskless implementation of an electrode - without impairing intelligence and
the critical mind - I would be the first patient."
Dalai Lama (Society for Neuroscience Congress, Nov. 2005)
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