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Patient Stories

Read and watch patient success stories from people who were treated with Deep Brain Stimulation.

Our center is one of the most experienced in the world at performing deep brain stimulation (DBS), having implanted hundreds of neuromodulation devices to improve quality of life and function in patients with disabling movement disorders. We maintain vigorous basic and clinical research programs that allow us to offer patients appropriate opportunities to participate in clinical trials and cutting-edge treatment modalities.

A pilot flies again after surgery

Watch a story about patient Michael Mallory; he chose to have Deep Brain Stimulation after diagnosed with Parkinson's disease.

Successful surgery for farmer with Parkinson's disease

Ray Bricker is a 72-year-old farmer whose livelihood depends on his mobility. So nine years ago when he started to carry his arm funny, he immediately went to the doctor. After various tests, a local neurologist determined that he was in the beginning stages of Parkinson's disease. Soon after that he started taking medication to control the tremor.

Eventually Bricker, who lives near Chambersburg, Penn., visited a doctor in Austin, Texas, on the advice of a friend. That's where he learned that excellent care was much closer to home at Cleveland Clinic's Center for Neurological Restoration. He underwent a multidisciplinary evaluation and confirmed the Parkinson's diagnosis.

Like so many Parkinson's patients, Bricker's symptoms worsened over a period of time, and he proceeded to the next treatment option – deep brain stimulation (DBS) surgery with Dr. Andre Machado, Director of the Center for Neurological Restoration. DBS uses a surgically implanted medical device to deliver controlled electrical pulses to targeted areas of the brain. The electrical pulses are generated by a battery-powered device that is implanted in the chest, like a pacemaker. That device is programmed externally to fine tune the electrical stimulation as needed. Bricker had surgery for the tremor in his right arm during the summer of 2012. The brain lead was implanted in the left side of his brain.

"Treatment for Parkinson's disease involves replacing dopamine, a lost chemical that helps to fine tune a section of the brain for movement," says Joseph Rudolph, MD, of Cleveland Clinic’s Department of Regional Neurosciences, who now treats Bricker. "This dopamine then triggers the next group of cells to behave appropriately." After a patient has been on medication for many years, he may opt for surgery to replace the lost signal with electricity rather than a chemical.

DBS for Parkinson's disease is not experimental and has been in use for many years, but there are still not many places that perform this complex procedure. "This is very benign brain surgery," Dr. Rudolph says. "Half of the surgery is typically done while the patient is awake." Like any surgery, there are risks, but the odds are quite low, so people should not shy away from it. However, to ensure optimal results, a team of multidisciplinary Cleveland Clinic professionals meets to determine if a patient is an appropriate candidate for the surgery.

For Bricker, the surgery was a success and he is happy to continue leading a fairly active life. "We left the hospital, and I felt good," he says. "Without the surgery, I would probably be in a wheelchair." Instead, Bricker is able to help his son with the farm – even driving the tractor.

DBS surgery puts handyman back to work

Bernard Schafrath eats life. The 68-year-old Wooster, Ohio, resident thoroughly relishes his role as handyman, woodworker and gardener in his retirement years. “I go from daylight ‘til dark,” he says. “As long as I keep busy, I can just go and go and go.”

That wasn’t always the case. Like some of his family members, Bernard suffered from a condition known as essential tremor. The neurological disorder is characterized by uncontrollable shaking in different parts of the body. About a decade ago, symptoms emerged in his right hand, becoming severe a couple of years ago. “I never thought I was ever going to have that problem because I’m so active,” he says. “I always think positive.”

However, his erratic hand movement — initially only manifesting when he missed a meal — eventually turned his labors of love into laborious chores. “I was getting depressed at times, because I couldn't do what I wanted to do,” he recalls.

When his primary care physician’s attempts at controlling the tremors through medications and other methods failed, he turned to Cleveland Clinic’s Center for Neurological Restoration. The Center is part of the Neurological Institute and is known for its experience in Deep Brain Stimulation (DBS) to improve quality of life and function in patients with disabling movement disorders.

DBS involves surgical implantation of electrical leads inside the brain, believed to be affected in essential tremor or Parkinson’s disease. Electrodes deliver energy impulses to modulate the abnormal activity causing symptoms. A pacemaker-type device is implanted in the chest and connected to the brain leads, providing the energy needed to activate the electrodes in the brain. The power is adjusted based on the amount needed to address the tremors of each patient.

Bernard underwent the surgery in November 2012 and, within a couple of months, he was well on his way to working with both hands again. Dr. Andre Machado, MD, PhD, Director of the Center for Neurological Restoration, performed the surgery. “It resulted in good tremor control,” Dr. Machado says.

Bernard reports a significant increase in his energy level as well as a lack of tremors. “It’s just fabulous to be able to use my right hand with no side effects at all,” he says. “I would highly recommend it. You’ve got to go through a little to go through the operation and get it set up, but it's well worth it to get the quality of life back.”

DBS saved a life and an acting career

Lucy Roucis’s ordeal started when she couldn’t hold a yogurt container without shaking. The 27-year-old was on an audition for a commercial and was asked to hold the yogurt steadily in her hand — something that suddenly seemed impossible to do.

Originally from Denver, Ms. Roucis had moved to Los Angeles years before to become an actress. She had found success with small parts in movies and TV shows, and got many jobs with commercials and modeling. For a steady paycheck, she typed for law firms during the day.

Now she couldn’t keep her hands from trembling. Ms. Roucis began to feel the effects elsewhere, too. Her typing speed slowed, which she initially blamed on the typewriters. But when her words-per-minute dropped to 30 from a high of 105, she could no longer ignore the fact that something was wrong.

The first neurologist she saw said that it was likely young-onset Parkinson’s disease. But that prospect sounded too harsh to Ms. Roucis, and she set out to prove this diagnosis wrong. She began looking for other explanations for the tremors, but learning about ALS, Huntington’s disease, multiple sclerosis and essential tremor made her realize that the other possibilities were just as bleak, if not more so.

I realized that at least Parkinson’s wouldn’t kill you,” she says. “It just makes life really hard. But I could live with that.”

Her diagnosis took six years before it was definitive, partly because of her age (it’s rare for someone so young to develop Parkinson’s), and also because she was additionally diagnosed with thyroid cancer. In 1990, she had her thyroid removed and has remained cancer-free. Just before the definitive diagnosis of Parkinson’s disease, Ms. Roucis moved back to Denver to be closer to her family, a move that saddened her because she felt like she was giving up on her dream of being an actress.

This changed in 1993 when she discovered the acting troupe PHAMALY (Physically Handicapped Actors and Musical Artists League). PHAMALY has allowed Ms. Roucis to continue her acting career without trying to ignore or hide her Parkinson’s. As of early 2009, she has performed in 18 shows with the troupe.

Yet the disease took a toll on her life. She experimented with different drug therapies to keep her tremors under control, many of which made her ill. She heard about deep brain stimulation, or DBS (the implantation of a brain pacemaker to ease Parkinson’s symptoms), in the late 1990s. She dismissed the idea at the time because the procedure was new; she didn’t want to be one of the first to undergo it. Her Parkinson’s also was much more manageable at the time.

By 2008, Ms. Roucis’s condition had progressed to a state where she felt surgery was her last hope. She had been suffering from the disease for almost 22 years. Some days she couldn’t even leave her apartment. She was crippled by her tremors and dyskinesia. Her face sometimes was “frozen,” leaving her unable to express herself. She needed assistance to walk and frequently had to rely on a wheelchair.

At the annual Michael J. Fox Foundation gala research roundtable luncheon, she heard about Cleveland Clinic’s Center for Neurological Restoration. She came to Cleveland to explore DBS at Cleveland Clinic, and after an intense screening, it was determined that she was indeed a candidate. Her surgery was scheduled for six weeks later.

By then, her surgery day couldn’t come soon enough. “I was just so sick with Parkinson’s,” Ms. Roucis recalls. “It had taken over my life. All I did was lie on the floor and writhe or not be able to move all day.”

Ms. Roucis opted to have electrodes implanted on both sides of her brain at the same time. The nine-hour surgery proved to be trying. She had to be off her medication so the surgeons could know when the electrodes were in the correct place. The lack of medication left her arms and legs twisted and contorted. At one point, the surgical staff asked her if there was any music she might like to hear, and she requested Crosby, Stills, Nash and Young’s “Carry On.” She found comfort listening to her favorite music, and everyone in the operating room was delighted when she began singing along.

One week later, battery packs to control the electrodes were implanted just beneath the skin of her chest. Ms. Roucis can easily access the battery pack controls to turn the system on and off.

Since the electrodes have been turned on, Ms. Roucis has noticed a profound difference. Her medication dose is now less than half of what it used to be. Her tremors have decreased substantially. She still experiences some tremors in her left leg and right arm, but she has her balance now and the ability to walk freely, something she had not been able to do in years.

It’s like a gift,” she says. She feels so much better now and is still performing in PHAMALY shows. She recently finished a month-long run of “Steel Magnolias,” and she’s decided not to perform in the 2009 summer musical so she can travel and really appreciate her new-found freedom.

I notice the little things the most,” Ms. Roucis says when she contemplates how her life has changed since having DBS. “Things as minor as turning the pages of my scripts myself. I’m so glad I had the surgery.… It’s the next best thing to a cure. I‘m free to be me again, and that feels really good.”

From despair to deliverance: surgery ends a 26-year nightmare

Essential tremor disorder ate away at Dirk Hoch’s small motor skills for more than 25 years. What started as a slight difficulty with his handwriting progressed slowly but steadily to the point where about the only thing he could eat was oatmeal out of a large plastic mixing bowl, held in his arms instead of his unsteady hands.

“I began to realize that if I was going to survive, I was going to need someone to feed me or I’d need to be in a nursing home,” recalls Mr. Hoch, 53.

When the symptoms first appeared in 1982, a physician near his home in Indiana accurately diagnosed his condition, but offered only prescription medication as treatment. The medication and lifestyle modifications helped Mr. Hoch, a local postmaster, cope with the tremors for many years, but every time a new stressor arose in his life, the symptoms worsened. A divorce in 1997 led to an intensification that lasted roughly six years.

As his condition deteriorated, he kept asking his doctor to increase his medication dosage. The doctor agreed for many years but, finally, they decided that letting the patient “self medicate,” in effect, was no longer working. The doctor referred Mr. Hoch to another neurologist, who sent him to another one and yet another. The main advice he received? Retire from the Postal Service.

Learning about DBS

By then, Mr. Hoch’s medication level was so strong that he was having trouble finding his way home from work, yet the tremors continued to worsen. In 2007, as his second marriage failed and he faced the prospect of going on disability, he read on the Internet about deep brain stimulation (DBS).

“I cried when I first learned about it. It was so scary to think about a four-part surgery, being awake for some of it, with them drilling holes in my head and inserting wires,” Mr. Hoch says. “But then I decided that if it was my only option, I wanted to go to the very best place.”

He called a long-lost friend from childhood who is now a physician in Kansas City, and their collective research led to a clear answer: Cleveland Clinic. Mr. Hoch contacted a nurse in the Neurological Institute and, six weeks later, traveled to Ohio for a three-day series of appointments to “go over me with a fine-tooth comb.”

When he was ultimately approved as a candidate for DBS, he was still skeptical about the restrictions he would face afterward. After the staff assured him that the limits were not significant (don’t play touch football, stay away from welders, plan on extra delays at airport security), he decided to proceed.

The Miracle of Normalcy

Mr. Hoch’s first surgery was October 2008 and the second was April 2009. For Mr. Hoch, the result has been “complete relief” from the long-standing symptoms.

“I can now do so many of the things most people just take for granted,” he says. “I can eat. I can write. I can drink from a glass. I can button my own shirt and I can shave! My life is as normal as anyone’s now. It’s so amazing.”

He would like to return to work in a customer service job similar to his former position as a postmaster but now, instead of his health holding him back, it’s the economy. While he waits for something to come along, he fills his days with hobbies, such as working on or riding one of three Harley-Davidson motorcycles he owns or playing blues harmonica.

Neurologist Ilia Itin, MD, has followed Mr. Hoch both before and after DBS surgery. “Mr. Hoch is young and in otherwise excellent health,” says Dr. Itin. “He made significant improvements after DBS surgery, including being completely taken off of any medication, and there is no reason why he cannot go back into the workforce and have a second career. He still has a lifetime ahead of him.”

Mr. Hoch also has resumed an activity he had to give up for years: cooking. He frequently shows up for his follow-up appointments at Cleveland Clinic with baked goods to share with the staff.

“My mother was a fantastic cook and I really enjoyed learning from her,” he recalls. “But for years, I couldn’t handle things like measuring spoons. This has come back to me now, and I am so grateful to the Cleveland Clinic staff for giving that back to me, so I give back to them."

“The whole team stood shoulder to shoulder with me. I can completely count on everyone there. They have become like part of my family.”