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Local patients report radically different effects from electroshock therapy
By Zachary R. Dowdy
Newsday
September 16, 2001
"IT HAPPENED almost overnight," Dr. Paul Rosenbaum said, recalling the onset of the first stream of bleak days back in 1989.
They began when, out of the blue, he lost his ability to speak. Try as he might, he could hardly get words to flow out of his mouth, and when they did, they were garbled and unintelligible. A stroke, doctors said.
Rosenbaum, seeing his dental practice doomed, fell under the full-body grip of a depression that chained him to his bed, where he'd lie for days on end wondering if living was worth the trouble.
"I was frightened and became emotionally unstable," the West Hempstead man recalled. "It was a living death."
After months of unsuccessful treatments with drugs, Rosenbaum, now 76, joined tens of thousands of people who put their hopes in what may be the most controversial psychiatric treatment in use today: electroconvulsive therapy.
ECT, or electroshock, has seen a brisk resurgence in recent years, nationally and on Long Island, with more doctors recommending it to treat depression, as well as psychosis and catatonia. At least 100,000 people undergo it each year in the United States, up from about 34,000 in 1980, according to the National Institute of Mental Health.
Electroshock so alters people's existence that patients often divide their lives into pre- and post-electroshock blocks.
Sometimes the change is for better, sometimes for worse.
ECT helped Rosenbaum - who even repeated the treatment when he relapsed into depression years later. "I consider myself an example of success for ECT," he said, "especially for those for whom medication is not viable."
But electroshock "ruined my life," primarily by destroying her memory, said Carol Steinhauser of North Babylon. She said ECT was forced upon her in 1992. "It took me a year to relearn how to read and write," said Steinhauser, 54, an avid reader who first noticed the harmful effects of her 36 ECT treatments one day when she tried to read Newsday. The words made no sense.
"I didn't remember one word to the next," she said. An occupational therapist helped her relearn how to read, but "I wanted to finish college and I felt like I couldn't because I couldn't remember anything. It destroyed my dreams."
The personal stories of Rosenbaum, Steinhauser and other local electroshock patients serve as reminders that behind the controversy over ECT are real people struggling to deal with real illnesses at what may be the most difficult points of their lives.
Supporters such as Rosenbaum say recent refinements make it a kinder, gentler treatment that allows people to lead productive lives.
But other former patients, who lambaste ECT, describe themselves as "survivors." Some doctors, including psychiatrists, deplore it as "barbaric," saying it causes brain damage, evidenced by memory loss and other side effects.
Electroshock has been used often on Long Island, where several hospitals perform the procedure and train physicians in its use. SUNY Stony Brook and Long Island Jewish Medical Center's Hillside Hospital have extensive programs, due in large part to the presence at both of Dr. Max Fink, a psychiatrist who is perhaps ECT's most avid proponent nationally.
Fink, who declined to be interviewed for this story, addresses ECT's bad reputation in his 1999 book, "Electroshock: Restoring the Mind."
"Electroshock is an effective and safe treatment for those with severe mental illness," he wrote. "Electroshock has undergone fundamental changes since its introduction 65 years ago. It is no longer the bone-breaking, memory-modifying, fearsome treatment pictured in films."
ECT, which is performed in hospitals, is most often used when psychotherapy and medication either fail or when the drugs are dangerous to the patient.
Despite its long use, electroshock is still an enigma; no one really knows how or why it works for some people.
Some critics compare the procedure, in which electricity is passed through the brain via electrodes, creating a grand mal seizure, to slapping the side of a TV set to fix the reception.
Sometimes the blow produces a clear picture, but often only for a short time, and with varying degrees of damage, if any, to the set.
Relapses of the patient's illness occur in about half of all cases. And some former patients report an inability to recall special moments, such as Christmas holidays; in the worst cases, massive chunks of childhood vanish.
As critical voices rise in volume, the widening debate over ECT has spilled into the state legislature, which is considering several bills to regulate its use.
State Assemb. Martin Luster (D-Trumansburg) wants to begin requiring that providers report their use of ECT and to create an advisory group to review standards and outline the legal issues involved, including patient consent.
Right now, several psychiatric patients in Long Island hospitals are resisting doctors' recommendations that they receive electroshock.
The case of Paul Henri Thomas, 50, a Pilgrim Psychiatric Center patient who over the past two years has undergone the procedure 60 times - against his will all but three times - is the most notable example wending its way through the courts.
Luster's office said that court applications to administer electroshock without a patient's consent jumped 73 percent from 1999 to 2000, from 56 to 97, many of those applications filed by Pilgrim.
The spike may reflect an increase in perceived dangers of ECT, or wider use by hospitals convinced it works.
Steinhauser's problems began with a 1990 motorcycle accident. She was riding on the back as her then-husband steered.
They were going to Montauk Point to gaze at the ocean. A van cut into their path and Steinhauser was thrown off the bike. She broke her back and suffered herniated discs in her neck.
She was in excruciating pain, but says she was never depressed or mentally ill; her husband insisted she was. About a year after the crash, she said he had her admitted to South Oaks, a psychiatric facility in Amityville, and authorized electroshock treatment against her will.
Steinhauser harbors "resentment" toward ECT, saying it has done her more harm than the debilitating accident. Even today, she uses a wheelchair to get around and takes medication to relieve pain from the crash.
"The psychological is more sensitive than the physical," she said. "I felt like I was a vegetable for a while."
Because of her memory losses, photos, friends and relatives fill in the gaps in her life: Christmases, her divorce, how to paint. They tell her, for example, that she thoroughly enjoyed a Diana Ross concert at Jones Beach some time before her accident.
"It bothers me that I couldn't remember the good things I had in my life, like the Diana Ross concert," she said.
Unlike a broken bone, memory loss can't be confirmed or disproved, but doctors such as Samuel H. Bailine, physician in charge of ECT services at Hillside Hospital in Glen Oaks, are skeptical of such claims.
His facility, located on the Nassau-Queens border, administers 3,600 electroshock treatments each year, a peak reached after a steady rise, he said.
Bailine concedes that ECT causes some memory loss, but he said those losses are not brain damage, are confined to the period during ECT treatments, and that even some memories from that period come back over time.
The memory losses are a lot like what happens when you turn off a computer before saving items on its hard drive, he said. The information may be lost, but the computer is intact.
"There are things we expect to remember and if we can't remember them, we turn to some convenient thing to blame it on," Bailine said.
But critics say it is more like having the saved contents of a computer's hard drive completely erased when it crashes.
Paul Rosenbaum, the dentist, said electroshock did erase memories - but only the bad ones. He vaguely recalls the psychic pain he suffered, and does not recall the period of treatment itself.
He does, however, remember the day when his mood began to lift. It was his 64th birthday, and he was still at New York Hospital in White Plains, having undergone about six treatments.
His wife, Arlene, had come with cake to celebrate.
"From that day on, I began to improve every single day," Rosenbaum said, adding that he learned to speak again with the help of a speech pathologist.
Unable to resume dentistry, he set his sights on becoming a substance abuse counselor. But that dream fizzled last year when the state changed the requirements, and Rosenbaum again sank into depression. He underwent ECT again last April.
The treatment, which he received at Mercy Medical Center in Rockville Centre, is the only thing that helped, he said.
Now he spends his time planning culturally enriching events for former mental health patients, such as tours of museums.
Rosenbaum speaks highly of ECT and the doctors who he says gave him his life back. "I have no loss of memory of the pleasant things in my life," he said.
Westbury's Scott Demeter says ECT didn't help him in two courses of treatment he had at Winthrop- University Hospital in Mineola in 1987 and at Hillside last year. But it didn't harm him much, either.
For years, Demeter, 43, struggled with depression and obsessive-compulsive disorder. Often, he fixated on unattainable women, such as Hofstra University classmates with boyfriends or husbands.
Anxiety over those women led him into deep depression.
"To me, it was a true physical feeling," he said. "Like a severe compression inside my forehead. I used to think I had a frozen wall of tears in my head, but I couldn't cry and so I just felt so paralyzed by sadness.
"Things seemed dark and cloudy," he said. "It always seemed like night time, even when it was bright outside."
ECT was one of many treatments Demeter tried - psychoanalysis, behavior therapy, Gestalt therapy, exposure response prevention, neuro-linguistic programming and trauma therapy, to name a few - before most recently finding some success with medication.
But he reports some hearing loss that he thinks came from ECT.
That problem was more severe for Lance Shere, 41, of Glen Cove. He said his 60 ECT treatments knocked his hearing out of whack: he now hears things at several times their actual volume.
Testifying at one of Luster's hearings in July, Shere said he suffered permanent memory loss and now must cope with amplified hearing, a condition called hyperacusis. He can hardly function without earplugs.
"I'm sure it's from ECT because I never had a problem with hearing until I had ECT," said Shere, who had three courses of treatment between 1994 and 1996: at New York Hospital in White Plains, Hillside, and Creedmoor Psychiatric Center in Queens Village, where he was shocked 45 times.
Shere called for an outright ban on the procedure, saying it has made his life much worse than the anxiety and depression doctors were trying to treat.
"The last five years of my life have been a complete blank," he said, blaming ECT for his inability to read and to concentrate.
Shere, who managed to hold odd jobs before his treatments, now learns job skills at a vocational rehabilitation program in Manhasset, Northern Lights, for former mental health patients.
But he said he must learn things over and over again because his brain acts like a sieve: Information comes in, but it leaves almost as quickly.
After months of trying simple commands on a Windows 95 program, he still can't recall how to open a file after turning on the computer. He has borrowed the same book from the library several times because he can't retain what he's read. And he frequently finds himself renting movies twice from the local Blockbuster Video because he doesn't remember having rented them before.
On top of it all, he still suffers from anxiety and depression.
"I would do anything to go back in time and not have ECT done to me," Shere said. "Because of it, I can hardly function at all."
That's hard to believe for Roland Kohloff, principal timpanist for the prestigious New York Philharmonic, who said electroshock offered him the fastest relief each time he was beset with depression.
"It's been very positive," he said of his experience with ECT. "Instead of two months in a hospital, I get a series of treatments for a week and a half and I'm back playing again."
Kohloff, 66, has been stricken with depression at least four times. The first episode came in 1956 as he and his wife, Janet, coped with the loss of a child.
Kohloff got through that without ECT, using psychotherapy, but the depression lasted several months.
At his wife's recommendation, he tried ECT in subsequent bouts with depression, starting in the 1980s at New York Hospital and then at Hillside, most recently last summer. Now Kohloff, who lives in Riverdale, is comfortable seeking ECT when depression sets in.
In fact, he helps promote ECT as a safe option by appearing in a Hillside Hospital video explaining the procedure.
"After that first time I didn't have any qualms about going back again," he said, adding that the procedure hasn't harmed his performances.
Lorraine Pentangelo, 47, of Ronkonkoma, said she felt betrayed when she underwent ECT for depression at the age of 17.
At that time, supporters say, the procedure was cruder and more risky. She said doctors didn't inform her of the risks when she was hospitalized at the former Central General Hospital in Plainview, which is now North Shore University Hospital of Plainview.
That one course of treatment over three weeks was enough to make her feel better. But a relapse five years later, and new information she received about memory losses from ECT, made her bitter. She said her short-term memory was hazy at first but that she quickly regained her full capacity to remember.
"I was horrified in the beginning of what had been done to me," she said.
She now thinks ECT has a place, but only as a treatment of last resort, used when drugs and psychotherapy fail.
"Now, I have come full circle, and I think my doctor was trying to get me better fast," said Pentangelo, who volunteers at the Clubhouse of Suffolk, a support service for former mental health patients. "If somebody is so depressed and they are suicidal, then is society supposed to let them take their own life? I think they can use this treatment - but only if it's really, really necessary."
Steps in the ECT Process
ELECTROCONVULSIVE therapy patients usually undergo about 12 treatments, given up to three times a week, said Dr. Samuel H. Bailine, who is in charge of ECT services at Hillside Hospital in Glen Oaks. The procedure lasts about 45 minutes.
The patient lies on a gurney on his or her back as soft music plays. The patient is given a sedative intravenously and an anesthesiologist regulates the oxygen that is delivered through a mask. The patient's heart rate is monitored with an electrocardiogram.
Two electrodes coated with conducting gel are placed on the patient's forehead, and a mouth guard protects against broken teeth or bitten tongues prompted by the coming grand mal seizure.
A restricting cord is placed on one of the patient's lower legs, to prevent the anesthesia from relaxing the foot. The motion of the foot indicates to doctors that the seizure is taking place.
The patient falls asleep and is given a muscle relaxer to mitigate the thrashing convulsions that people associate with electroshock from movies such as "One Flew Over the Cuckoo's Nest."
Bailine said he regulates spurts of electricity ranging from 5 to 100 joules, depending on the amount of skull, tissue and fluid that the current must penetrate before reaching the brain to cause a seizure, which lasts about a minute.