By Jared Chausow
By Katie Toth
By Elizabeth Flock
By Albert Samaha
By Anna Merlan
By Jon Campbell
By Jon Campbell
By Albert Samaha
Kelley turned the device off last year as a prerequisite to enter another drug trialwhich also failed to help herand hasn't turned it back on since. Now, two years after VNS was approved for depressionand seven years after Kelley and Merdinger were implanted a new controversy is brewing over the device. In February, the Centers for Medicaid and Medicare joined Blue Cross/Blue Shield in its decision not to cover VNS to treat depressed people. (Many health-insurance carriers don't have clinical guidelines for VNS coverage, and patients have reported that they were only able to get coverage after a lengthy appeals process.) The insurers weren't sold on the effectiveness of the device, and the FDA had concerns that subjects in some VNS trials were reported to have attempted or committed suicide. (Lisanby said that she knew of one suicide by a patient at the brain-stimulation lab, but declined to comment further for fear of giving any identifying characteristics. It's unclear if that patient was in a VNS study or had undergone a different treatment.) Even the U.S. Senate got involved in the debate, with Republican Senator Charles Grassley of Iowa ordering an investigation into the initial VNS review process.
At a panel hearing to review the device after FDA approval, representatives of Public Citizen's Health Research Group and the National Research Center for Women and Families spoke out against the VNS approval, concerned that the device hadn't been proven effective for a significant portion of depressed patients. "When treatments don't work and the person being treated is depressed, that can contribute to the depression, because it contributes to that sense of hopelessness and failure," warned Diana Zuckerman, president of the National Research Center for Women and Families. "If [VNS] fails, that could actually contribute to the depression, make them feel more hopeless, and even potentially contribute to suicide down the road."
Despite having given up on VNS herself, Kelley remains adamant that it should be made available to others. "I don't care if only 20 percent of the people respondI could be one of those 20, and you can't take options away from people who are this sick." She is clearly still suffering from her own illness and looking for other options, especially since her depression returned with a vengeance this spring. She would go days without showering or dressing; eating seemed like a pointless chore. She spent her time isolated on the porch, not doing or saying anything. When she did talk, it was often about her plan to drive her car off a bridge.
"Years ago, I tried to argue with it and fight with it," Deb said, but she has learned that arguing doesn't work. Now, she just listens, sheds tears along with Kelley, and does what she can to comfort her.
At one point a few months ago, Kelley began taking her medication more frequently than directed, perhaps in an attempt to overdose, when Deb confronted her about it: "It wound up being my pure, blunt emotion of just crying and saying, 'Please don't do this!'and she stopped." For the next two weeks, Deb stayed home from work, scared to leave Kelley alone.
"I don't know how she hasn't offed herself," Deb admitted quietly. "It got to the point where I said to her, 'If that's what needs to be done, if you can't stand it anymore, I will support you.' It's so frustrating and hard to watch someone suffer like that."
Merdinger feels the frustration as well. "One thing about depression is, once you leave it, it's difficult to remember how bad it was. . . . Sometimes, when I look at her, I almost want to say: 'Snap out of it!' But I know that never worked for me. . . . We sat there side by side, and I almost expect her to be a success too, because we went through this together. It's hard to watch somebody you care about, to almost leave them behind as you go forward. I feel guilty."
Despite the frustration of so many failed treatments, both Deb and Merdinger have urged Kelley to keep looking for a new experiment. "I want her to keep going, to keep trying," says Merdingerand there is one thing left that she has yet to try
Psychiatric brain surgery has come a long way since the lobotomy. If Kelley were a clinically depressed patient in the 1940s, that early form of psychosurgery may have been attempted, and most likely would have left her brain-damaged. Back then, psychiatrists just destroyed the general area of the brain they found problematic. Today, they can pinpoint the specific area associated with the neurological or psychiatric disorders and carefully alter it. That's the idea behind deep-brain stimulation, a surgical procedure that places electrodes in the brain.
In deep-brain stimulation, or DBS, a pacemaker-like device in the chest provides a steady flow of electrical pulses to two electrodes implanted deep within the brain. The placement of the electrodes depends on the ailment they are meant to treat: For years, patients with Parkinson's disease have undergone FDA-approved DBS surgery, and researchers have recently begun using experimental DBS to treat other neurological and psychiatric disorders.