Patient Story - Never Give Up

With deep brain stimulation, Scott Caslin finds pain relief and a positive outlook

Scott Caslin was only nine years old when he learned he had dystonia. By the time he was 13, the disease—a neurological movement disorder syndrome characterized by muscle contractions that result in twisting and abnormal fixed postures—had left him bedridden and in constant pain.

At 15, Caslin found some relief when doctors at Presbyterian Hospital in New York City implanted an electronic stimulator on his spine that sent electronic pulses to an implanted receiver designed to block his dystonia symptoms.

“That got me to be able to stand again,” says Caslin, now 43. “With medication I was able to be on my feet. It was a huge improvement.”

The implant worked for about five years but was removed after it started to corrode. For a time, Caslin was able to keep the disease in check through medications and chiropractor visits. But by the time he moved to North Carolina about four years ago, the severe pain had returned. The contractions and twisting meant his chin was often touching his chest and his head was usually tipped and twisted to one side. Sometimes he was so twisted and bent over that his head almost touched the floor.

“I had gotten so used to being crooked I didn’t notice the twisting, but the pain was bad,” he recalls. “I was desperate. I was in pain 24/7 and looking to try anything.”

Caslin visited Dr. Jeffery Cooney, a neurologist in the Duke University School of Medicine, who referred him to Duke neurosurgeon Dr. Nandan Lad. Both doctors agreed that since an electronic stimulation device had helped Caslin in the past, he was a good candidate for deep brain stimulation. In the autumn of 2016, he underwent two surgeries that changed his life for the better.

An almost immediate change

Deep brain stimulation (DBS) uses electronic pulses to block parts of the brain from sending the signals that cause tremors related to dystonia and other neurological movement disorders. Lad performed two surgical procedures on Caslin. First, he implanted two thin wires into the area of the brain known as the globus pallidus interna. A week later, he implanted a battery pack in Caslin’s chest and hooked the wires up to the battery. The tiny, carefully controlled electrical currents delivered through the electrodes block the involuntary muscle contractions caused by dystonia. In addition, DBS can reduce the pain caused by dystonia.

“I noticed the change almost immediately after the second surgery,” says Caslin. “The pain started going away and my neck started to straighten up. I still get pain, but it is pain I can live with and I can do much more.”

A reason to stay positive

The surgeries improved his ability to have quality relationships and enjoy his young nieces and nephews, who live with his sister just upstairs from his lower-level apartment. For the first time in years, he could sit upright without pain and twitching. The inability to sit comfortably had taken its toll: Caslin had spent so much time on his feet that they had begun to turn outward. He has since had corrective surgery on one foot and a second surgery is planned.

“It’s one of the side issues I’ve had to deal with, but I’ve always had a positive attitude and it’s a lot easier to stay positive since Dr. Lad’s surgery,” he says. “Before the implants, I couldn’t do anything. I had to sleep in a chair and during the day I had to stand most of the time because sitting was too painful.”

Living life to its fullest

Unlike the electrodes implanted on his spine when he was a teenager, the DBS electrodes and battery pack will not erode. Every few months, Caslin and his doctors experiment with the settings for the system to determine what works best in controlling his pain and muscle contractions. The battery located under the skin in his chest will need to be replaced about every five years through an outpatient surgical procedure, but the wires implanted in his brain should last a lifetime, says Caslin.

He says he would recommend the procedure to patients facing similar adversities “in a heartbeat” and credits the DBS for helping him maintain his notable upbeat attitude.

“One thing I’ve learned is to never give up,” he says. “Never feel sorry for yourself and never give up. There is always someone worse off than you and there is always a way to live your life to its fullest.”

Scott Caslin with his sister. Caslin credits deep brain stimulation with helping him keep a positive outlook despite his dystonia symptoms.

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