"Is there no hope for me?" John asks me in a shaky voice. His hands were chapped and bleeding from constant washing. "I'm in a mental prison and there is no way out," he whispers. John has obsessive-compulsive disorder (OCD), a disabling condition in which individuals have repetitive thoughts and behaviors they can't control. There are two types of standard recommended treatments for OCD: medications and cognitive behavior therapy. John has not had meaningful symptom relief from any of the recommended medications, or cognitive behavior therapy, or various combinations of medications and therapy. John has also tried a number of experimental treatments without success.
As a clinical psychiatrist and researcher, my goal is to uncover new treatments for people like John, who have tried standard treatments, but who continue to have severe symptoms. John has tried all of the research studies offered in our research clinic, and those offered in other academic settings in New York City. Now he is my office and at the end of his rope. Could he be a candidate for a surgical procedure called deep brain stimulation, also called DBS?
DBS applied to an area of the brain called the subthalamic nucleus was first developed in the 1980s as powerful way to block the tremors and stiffness of Parkinson's disease. DBS has had good and safe results in Parkinson's disease (see video describing DBS procedures for Parkinson's). In 2002, the Food and Drug Administration (FDA) approved DBS for use in Parkinson's disease. Earlier this month, Drs. Alim Louis Benabid of the Academy of Science in France and Mahlon DeLong of Emory University were awarded the 2014 Lasker-DeBakey Award (often called the "American Nobels") for pioneering deep brain stimulation in Parkinson's disease. To date, DBS has been used in over one hundred thousand of patients with Parkinson's disease worldwide.
When I told John that DBS was being studied in OCD, he asked, "How does it work?" I said, DBS delivers electrical stimulation to areas in the brain known to be involved with symptoms like yours.
For individuals who have DBS surgery, two thin wires, called electrodes, are threaded through small holes that are opened in the skull of the patient. Carefully, the neurosurgeon places the electrodes in the desired brain regions using a set of coordinates determined by an image of the patient's brain. Each electrode wire is next connected to a pacemaker-like device that is embedded in the patient's chest -- much like we see with cardiac pacemakers. The psychiatrist tells the pacemaker to send electrical signals to the brain by using a telemetric "wand" -- a device the patient holds over their chest for a few moments. DBS implantation surgery, of course, can have complications like infection or bleeding in the brain. Also, the pacemaker device will periodically run out of battery and need to be replaced (hear a blog talk on neurosurgery for OCD). My patient and I would need to weigh the risks and the potential benefits, as all of us need to do with any medical treatment.
Unlike DBS for Parkinson's disease, the evidence for DBS for OCD is still in its infancy. More research is needed to know exactly which area of the brain is best to stimulate, and what are the optimal electrical signals to deliver for each patient with OCD (see recent review). In 2009, the FDA approved a Medtronic DBS device to be used for patients with OCD who have not been helped by existing, approved treatments under a special program for called the "humanitarian device exemption." The area approved for stimulation by DBS in OCD is called the ventral capsule. Abnormal activity in areas of the brain connected to the ventral capsule are thought to be important in the symptoms of OCD. Changing the activity in this circuit with DBS may decrease OCD symptoms. In John's case, the OCD symptoms include repetitive thoughts ("there are harmful germs on me") and compulsive behaviors (hand washing). What makes DBS more attractive for individuals who are out of options is that the stimulation can be turned off if it is not working or causing side effects, whereas other surgical treatments for OCD are permanent (see International OCD Foundation website for a description of this alternative procedure).
It is important to know that this treatment is not for all individuals who have OCD. There is a high bar for being considered a candidate for DBS surgery, including having severe and persistent symptoms for many years despite trying all other possible treatments. For patients like John who are out of treatment options and continue to suffer with disabling symptoms, DBS may be a procedure to consider.
After reviewing with John the rationale and risks of the procedure, he took a deep breath and then he told me he was feeling more hopeful. John decided to continue researching DBS and to take time to decide whether it was a good option for him. If he decides to go forward with DBS, I will refer him to an academic center and hospital that have a special research protocol set up for getting the DBS device implanted and the stimulation treatment started.
If you or a loved one is out of options for OCD, like John, ask your doctor about alternative treatment options, including research that is underway. You can find research studies for DBS (and many other treatments) on the U.S. government sponsored clinicaltrials.gov website.
Carolyn Rodriguez, M.D., Ph.D.
Florence Irving Assistant Professor
Medical Director, Translational Therapeutics Program
Dr. Linda Carpenter at Brown University, Dr. Mark Richardson at University of Pittsburg Medical Center, and Dr. Sameer Sheth at Columbia University Medical Center contributed to this post.
Clinical Trials.gov (http://clinicaltrials.gov/): To find a research study of interest
Anxiety and Depression Association of America (http://www.adaa.org/): To find out more about depression and anxiety and to get referrals
IOCDF (http://www.ocfoundation.org)/: To find out more about obsessive-compulsive disorder