Erin, an otherwise bright and engaging young woman, has been paralyzed by obsessive compulsive disorder. That’s determined the trajectory of her life since childhood. She was just 4 years old when a doctor prescribed medication. That began what – until recently – was a fruitless search to control the mental illness that controlled her life.
“I’d have anxiety attacks multiple times a day. I’d just be overthinking everything,” recalled Erin.
Something as routine as going out to eat would trigger an emotional meltdown.
“I’d feel like it would be the end of the world if I was going to pick the wrong thing,” she explained.
Then, there were the compulsive actions.
“If I came home from babysitting and I was the last one in the house, I would have to lock the door 33 times, even though I knew it was locked,” she explained. “I felt like something bad was going to happen if I didn’t do it.”
School was a challenge. A messy blackboard would co-opt her attention, forcing her from the classroom. There were hospitalizations and suicide attempts.
When her longtime psychiatrist, Dr. Zvi Klopott, was asked if Erin was the worst case of OCD he had ever treated, “Probably,” he answered.
Frustrated by ineffective treatments, Klopott learned about a surgical option — deep brain stimulation. Used successfully for years to help relieve symptoms of Parkinson’s disease was holding out hope for people like Erin. Approved about 10 years ago by the FDA, it’s slowly catching on.
“Well, this may be a way to save her, because nothing else is working and she’s getting worse. She was hospitalized several times,” pointed out Klopott.
“I wasn’t that freaked out about the surgery, because it had so much potential to change my life,” noted Erin.
“The general theory is that the brain is abnormally firing and DBS [deep brain stimulation] creates a white noise that allows the brain to fire normally,” explained Dr. Julie Pilitsis, a neurosurgeon at Albany Medical Center.
Experienced with DBS for Parkinson’s patients, Pilitsis performed Erin’s surgery at Albany Medical Center on March 15. It was a first for her and the hospital – the only facility offering this treatment between New York and Boston.
This is what happened – two leads were inserted in Erin’s brain. While asleep for most of the procedure, she was woken up to ensure MRIs and GPS mapping of her brain had directed Pilitsis to the right spot for stimulation.
“She cracked a joke and smiled and looked content, which was new for Erin and for my interactions with her,” pointed out Pilitsis.
A pacemaker-like device was implanted near her collarbone. Then, leads from the brain were threaded down through the fatty area of the neck and attached, ready to deliver the right dose of stimulation to keep the intrusive thoughts at bay – which Erin will be able to control through an app on her phone.
Since the surgery, Erin is literally back at the plate, getting her groove back again to play softball at Elms College in Massachusetts, where she expects to return to in the fall – finally able to swing for the fences again.
“I used to be so ashamed of my mental illnesses and I used to try so hard to hide it,” she explained.
While her treatment is still ramping up, she’s already enjoying little victories – open kitchen cabinets that once triggered rage and an anxiety attack are now just open cabinets.
“I would have to run over and slam them closed,” remembered Erin. “Then, the other day, I noticed that they were open and I kind of just let it be for a little bit,” she pointed out.
That smile Dr. Pilitsis saw back in the operating room also means more.
“Now, it’s not like a fake it ‘till you make it smile. Now, it’s like a real, genuine happy smile,” beamed Erin. “Now, I can be who I really am and tell people my story and hopefully inspire people and help people along the way.”
DBS is not a cure and it doesn’t provide 100 percent relief from symptoms. So far, it’s the only treatment that’s helped Erin and many others with resistant OCD.
There are strict guidelines about who is eligible for the surgery.