Mary Ann, a registered nurse, was the first to notice that her head was tilting ever so slightly to the left. She was able to ignore it for a while, but over time the tilt became more obvious and disfiguring. Friends began to ask what was wrong with her neck. “It affected my job,” Mary Ann recalls. “It was hard for me to drive, because I couldn’t turn my head to the right. I had to hold the steering wheel with my right hand and hold my head straight with my left. It became really challenging.”

Mary Ann saw several doctors, visited a chiropractor and underwent acupuncture. Nothing helped. Eventually a neurologist at the UC Neuroscience Institute diagnosed her condition as cervical dystonia, an uncommon neurological movement disorder involving involuntary muscle contractions that force the neck into abnormal movements or postures. The neurologist advised Mary Ann that injections of botulinum toxin into her neck muscles would effectively treat her discomfort and deformity.

Botulinum toxin comes from a protein derived from the neurotoxin-producing bacterium Clostridium botulinum (pronounced botch-oo-LINE-um), an organism that can cause life-threatening botulism. Although widely used to vanquish wrinkles – it is marketed as Botox, Dysport, Xeomin and Myobloc – Mary Ann was fearful. “I knew it was a toxin, and the thought of having that injected was really, really scary for me,” she says. “I would schedule an appointment with the clinic, cancel it, schedule it, cancel it. I thought I’d somehow manage the dystonia on my own. But it continued to get worse and worse, to the point where I didn’t want to look in the mirror.”

Finally, Mary Ann found a specialist in Chicago who had led studies about botulinum toxin and dystonia. “I went to Chicago to see her, and she looked at my address and said, ‘What are you doing here? You have one of the best in Cincinnati.’ ”

Home again, Mary Ann found the skilled, knowledgeable and compassionate doctor she was looking for in Alberto Espay, MD, MSc. “He was so wonderful, warm and reassuring,” she says. “I needed to have total confidence in my provider, and he’s been that person. Because of his demeanor, I was able to get my first injections. I noticed the results within a week or two, and it totally gave me my life back, because I can do my job, I can go out in public. I look like a, quote, normal person again.”

Mary Ann gets a series of seven or eight injections every 4 months, and it is never easy for her. “I’m always nervous,” she says. “It does hurt. But it’s a small price to pay for having four months of a normal life afterwards. Dr. Espay has been a blessing, a godsend. He saved my life.”

— Cindy Starr

*  *  *

Hope Story Disclaimer – This story describes an individual patient’s experience. Because every person is unique, individual patients may respond to treatment in different ways. Outcomes are influenced by many factors and may vary from patient to patient.

No one ever wants to suffer a stroke. But when Paula suffered a major, life-threatening stroke in September 2013 while working at a local deli, one might say that her timing was perfect.

First and foremost, Paula got to the University of Cincinnati Medical Center quickly and in time for effective treatment. Paula’s manager realized that Paula couldn’t speak and that her mouth was drooping – classic signs of a stroke caused by a blockage. The manager called 9-1-1, ensuring that Paula could be evaluated, diagnosed and treated within the 4 ½-hour window for acute stroke care.

Then, in a turn of fate, Paula’s arrival at the emergency room also coincided with a pivotal moment in stroke care: the arrival of the successful clot-retrieving device.

For years stroke researchers around the world had been trying to prove that in a case like Paula’s, where oxygen to the brain is cut off by a large clot in a major blood vessel, it would be most effective to remove the clot rather than to simply try to dissolve it. But the doctors who wanted so desperately to retrieve those clots were unable to prove that this method was any better or safer than administering the clot-dissolving drug tPA, which for years was the only FDA-approved therapy for acute ischemic stroke.

By the time Paula received her diagnosis of an intracranial left carotid occlusion – a major stroke on the left side of her brain – some of those same stroke specialists at the University of Cincinnati Comprehensive Stroke Center were poised with new clot-retrieval technologies. At that very moment, they were prepared to begin testing one of those technologies in Cincinnati as part of an international study called THERAPY.

The THERAPY study, a Phase 3 clinical trial, was comparing standard delivery of rtPA (recombinant tPA) through an IV with the delivery of rtPA plus “mechanical thrombectomy,” an endovascular (in-the-artery) procedure in which a catheter is threaded up from the groin to the brain to allow doctors to retrieve the clot. The THERAPY study’s name stands for “Assess the Penumbra System in the Treatment of Acute Stroke.”

Because Paula was unable to speak or understand, Dawn Kleindorfer, MD, a neurologist and Co-Director of the Comprehensive Stroke Center, discussed the study with Paula’s husband, a UC graduate who recognized the value of clinical trials and agreed to have Paula participate in the research study. By enrolling in the study, Paula had a 50-50 chance of being treated in the conventional way – with rtPA alone – and  a 50-50 chance of being treated with both rtPA and the promising new clot retrieval device.

With a flip of a coin, Paula was assigned to receive the newer treatment from members of the UC Comprehensive Stroke Center. Paula received rtPA through an IV from Dr. Kleindorfer, then received endovascular  treatment from Andrew Ringer, MD, an endovascular neurosurgeon and member of the UC Stroke Team, who used the Penumbra System to evacuate her clot.

Paula’s outcome was dramatic. Despite the severity of her stroke, she went home a few days later and recovered without major deficits.

“The stroke has caused lingering effects,” Paula acknowledges. “I don’t have the strength in my right leg or right arm, and I walk with a limp. But I’m walking. My voice is raspy, and I can’t talk any louder than I am right now. But I’m talking.”

Paula is continuing physical therapy to strengthen her right side, and she participates in Zumba exercise classes.

Paula doesn’t remember any details about the stroke, which she suffered at age 66. She remembers walking over to the deli’s salad case, but nothing more. She is grateful to her manager for calling 9-1-1. And of her doctors and nurses at UC Medical Center: “I can’t say enough about them. They were super nice to me. I had all kinds of doctors coming to see me. The first question they always asked was, ‘Who is the President of the United States?’”

The THERAPY clinical trial followed on the heels of other studies, beginning with MR CLEAN in the Netherlands, which showed that treatment with rtPA plus the new generation of clot-retrieval devices was indeed more helpful to patients than treatment with rtPA alone. As a result, in a kind of domino effect, the THERAPY trial and other similar trials were halted early. Pooja Khatri, MD, MSc, a member of the UC Stroke Team and the international coordinator of the THERAPY study, presented the results of THERAPY in May 2015 at the European Stroke Organization Conference.

The UC Comprehensive Stroke Center is now in the process of deciding whether to establish rtPA followed by interventional treatment as the standard of care for all patients who suffer large-vessel strokes. “The results of these trials were just published in the beginning of the year, with more on the way,” Dr. Kleindorfer says. “It is a rapidly changing field, but yes, large-vessel  occlusions with the appropriate imaging within the appropriate timeframe should be treated with endovascular intervention.”

At this time the dual treatment will not be used to treat less threatening strokes, Dr. Kleindorfer says. But researchers at multiple sites, including the UC Comprehensive Stroke Center, have begun a new study (PRISMS) to see whether mild strokes should be treated with tPA.

— Cindy Starr

*  *  *

Hope Story Disclaimer – This story describes an individual patient’s experience. Because every person is unique, individual patients may respond to treatment in different ways. Outcomes are influenced by many factors and may vary from patient to patient.

Scott was working his dream job as a commercial airline pilot 10 years ago when his life was forever changed by epilepsy. After coming home from a long run, he complained of nausea and then collapsed with a grand mal seizure. The preliminary diagnosis was a brain tumor. But when a brain biopsy came back negative, his doctors revised their assessment. Although Scott had never traveled to exotic lands as a pilot, he had somehow developed a mysterious brain inflammation that unleashed seizures.

In a stunning reversal of fortune, Scott, only 33, would never fly again. “When you go from flying a $50 million airplane to being on a leash and people knowing where you are at all times, it’s a bruise to your ego,” he says.

Fortunately for Scott, he had a loving and supportive family. He also had access to the UC Epilepsy Center, whose multidisciplinary team worked hard to understand his seizures and to maximize his independence and quality of life. By mapping Scott’s seizures while he stayed overnight in the Epilepsy Monitoring Unit, his team discovered that the lesion causing the seizures lay within the folds of the occipital, parietal and temporal lobes of his brain. Scott’s epilepsy was complex. It could be tamed, but it probably could not be cured.

Under the care of his epileptologist, Dr. David Ficker, Scott takes a medication that has eliminated the grand mal seizures that can lead to loss of consciousness. But no medication has eliminated the complex partial seizures that occur about twice a week or the simple partial seizures that occur multiple times each day. The complex partial seizures begin with an aura that gives Scott “a creepy feeling and a sense of déjà vu.” They then progress to a state in which he feels and acts disoriented. The simple partial seizures, Scott says, affect his vision and “happen so often it’s like wall paper. Once you put it up you don’t notice it. It’s like looking through a prism in sunlight.”

“We have struggled with balancing seizure control and cognitive side effects of seizure medication,” Dr. Ficker says. “But over the years, we have succeeded in getting Scott on a medication that allows for better seizure control and enables him to live a more normal life. That includes running marathons!”

Four years ago, Scott began running again with his son at an after-school running club. A year later, he was running races. Marathons inevitably followed. And some big things happened. Running made Scott happy, reduced stress and reduced his seizures. And when Scott did experience seizures during his races, people learned about epilepsy and helped Scott make it to the finish line.

Before the 2015 Flying Pig, Scott briefed his pace team about his epilepsy. “I explained what my seizures looked like and asked them to just keep me pointed in the right direction. I had a complex at mile 2 and I think everyone relaxed once they saw what one looked like. My second complex was around mile 10. The touching part about this one was, once I started to feel better, I realized the other runners had made a protective circle around me. The people in my pace group all went home that day with a completely different perspective on epilepsy. I’m happy that people got a little knowledge out of it.”

— Cindy Starr

*  *  *

Hope Story Disclaimer – This story describes an individual patient’s experience. Because every person is unique, individual patients may respond to treatment in different ways. Outcomes are influenced by many factors and may vary from patient to patient.

For 45 years Rick coped with his epilepsy. As a young man he experienced undiagnosed “spells,” sensations of muscle tension and déjà vu. Later, as a theme park project manager who traveled the world, he suffered his first “grand mal,” or tonic clonic, seizure.

An MRI at a hospital in Australia revealed a small tumor, which they declared inoperable, and which led to a diagnosis of epilepsy. Rick took medications, functioned at an unusually high level during his seizures, and flourished in his career.

Then came the seizure that changed everything.

Driving in complete silence, Rick turned right off a highway exit ramp from the far left lane, drove half a mile down the road, pulled into a parking lot, and never remembered any of it. Shocked, Rick and his wife went home, searched the Internet for “epilepsy” and “Cincinnati,” and found the UC Epilepsy Center. He made an appointment and, for the first time, came under the care of highly trained specialists at a comprehensive epilepsy center. “They hooked me up to 25 wires and a long tether in the epilepsy monitoring unit,” Rick said.

The doctors stopped Rick’s medications and assessed the dozen seizures he had during the next 48 hours. Further testing with functional MRI confirmed that the source of Rick’s seizures, the “inoperable” tumor, was not close to any of his control centers for language, movement, or memory and therefore could be safely removed.

After surgery, Rick was able to cut his medication in half. He returned to his normal, frenetic workload, and then retired to the good life. Seizure-free, Rick noted wryly that he has been busy doing home repairs “that I wasn’t interested in when I was on large amounts of medication.”

Deanna was averaging three seizures a week when she arrived at the UC Neuroscience Institute. Sometimes her seizures caused her to pass out, and sometimes they left her blinking and wondering where the time had gone. Complicating her situation, Deanna suffered from a mood disorder, had been victimized by crime and had a history of using non-prescription drugs.

Clearly, a cross-center collaboration among specialists would be needed to sort out the reason for her seizures and to craft a solution. Deanna began by spending a week in the Epilepsy Monitoring Unit. “They sleep-deprived me, tested me with lights,” she recalled. “But it didn’t stress me out at all. I was so comfortable I didn’t have any seizures.” Deanna went home with a portable monitor on her head and promptly triggered a seizure.

The results showed that her seizures were stress-related; they did not involve the abnormal electrical discharges that define epilepsy. As a result, her doctors recommended that she take advantage of a unique opportunity: a clinical trial that involved a collaboration between the Epilepsy Center and the Mood Disorders Center. The study was testing a dual treatment that combined a mood medication with an intense regimen of talk therapy provided by a specially trained therapist at the Mood Disorders Center. The “seizure counseling” therapy, which included meditation, was designed to relieve the anxiety that was playing a role in Deanna’s seizures.

By learning to meditate, Deanna discovered that she could stop a seizure even if she felt an aura coming on. “You sit there and breathe and you come up with your own mantra, where you feel lightness in your limbs, and all the worries and the cares in the world slip away,” she said. With her doctors’ help, Deanna has now accomplished two major goals of her young adulthood: she has moved into her own apartment, and she has been cleared to drive. She has also put a new spin on her life. She’s no longer “a person who had seizures.” She’s “Seizure Girl,” the EPILEPSY CENTER person who conquered them.

Dick was enjoying his retirement as a full-time volunteer at Crayons to Computers when his memory began to go awry. He told his granddaughter that his car was due for an oil change, when he had just had the oil changed a few weeks earlier. After a neighbor borrowed his car, he had no recollection of her doing so. “I was acting funny, but I didn’t realize I was acting funny,” Dick recalls.

Then, while out with friends one evening, he lifted a glass of water to his mouth and heard it land with a crash on the table. By now, his friends were worried. Some began praying for this kind, energetic widower with a penchant for plaid shirts. One friend thought Dick had suffered a mild stroke, while Dick was certain that he had a brain tumor.

Eager to solve the mystery, Dick made an appointment at the UC Brain Tumor Center, where a specialist carefully reviewed his medical history and progressing forgetfulness. The specialist quickly ruled out the possibility of a brain tumor and, determining that Dick was suffering from a complex cognitive problem, referred him to a neurologist at the UC Memory Disorders Center. Dick underwent neuropsychological testing, and an MRI was quickly performed.

The news was good. Dick’s forgetfulness was caused by a treatable condition called limbic encephalitis, an inflammation of the brain triggered by exposure to an antibody in his blood. Dick began taking two medications and continued his visits with the neurologist.

Over time, his memory returned to full capacity. “During my visits, my doctor always gave me some words to repeat,” Dick says. “On my last official visit, he said, What day is it today? And I said, It’s Sept. 21, the day I get my driver’s license back.” Case closed.

It was a weekday evening like any other when a friendly customer service representative named Doug became the ultimate customer. His need? Stroke services, A to Z.

Doug, a self-described overweight former smoker with high blood pressure and diabetes, was trying out a new exercise routine in his living room when, at 5:25 p.m., his risk factors for stroke reached a tipping point. Doug’s head began to hurt, his face began to droop, and as he tried to walk to another room, he heard himself mumble, “I’m going down.” Before he hit the floor, his stroke-savvy adult daughter had dialed 911. Paramedics arrived and whisked Doug to West Chester Hospital, where he found himself paralyzed on his left side. Physicians, moving quickly and in accordance with research pioneered at the UC Comprehensive Stroke Center, determined that Doug’s type of stroke made him a candidate for the clot-busting drug tPA.

Doug got the drug within 2 hours of his stroke’s onset, well within the 3- to 4 ½-hour window of the drug’s effectiveness. Paramedics transported Doug to University of Cincinnati Medical Center for further testing and, by midnight, he was undergoing surgery for a total blockage of his right carotid artery. The surgeon cleaned out the artery, then sealed the wound with glue, leaving Doug with a 7-inch scar on his neck and no stitches. Soon, Doug was squeezing fingers, following commands and walking down the hallway outside his room.

He was soon discharged. “I came home and had pizza,” Doug says. “I do think it’s a miracle. No one can believe it.” Five days after suffering a major stroke, Doug was back at work, cheerfully helping dozens of customers with the nuances of industrial products like hand wrenches, power tools and safety gloves. Now that’s service.

Semiretired and working part-time at a restaurant, Lynne knew something was amiss when she looked at the cash register and then struggled to make her hands produce the correct amount of change. Could she have suffered a stroke?

Lynne pushed the thought aside until one of her daughters insisted on taking her to a hospital, where a CT scan and lung X-ray revealed the double-barreled problem: an egg-sized tumor in her lung and a cherry-sized tumor in her brain. The brain tumor was metastatic, caused when cancerous cells from Lynne’s lung traveled to her brain. Four days later, Lynne met the UC Brain Tumor Center team that would help save her life. Neurosurgeons removed the metastatic tumor from her left temporal lobe and performed aggressive, localized secondary treatment by lining the tumor cavity with tiny radiation seeds the size of grains of rice.

As she recovered from brain surgery, a second team of surgeons made plans to remove the tumor in her lung. Eventually sound but not yet safe, Lynne underwent regular MRI’s. At 9 months a routine scan picked up two pea-sized brain tumors. This time the Brain Tumor Center team took aim with focused beams of radiation from a linear accelerator. Lynne was treated using a noninvasive mask that was custom fit to her head – no bolts or surgically implanted pins necessary. Stereotactic radiosurgery took about an hour, leaving no side effects.

Today, after five years without a recurrence, Lynne lives a life of wellness and adherence to the Buddhist faith. “Since cancer, I’ve changed my whole attitude on life,” she says. “My faith has become very special to me. I call it my gift of cancer.”

Some people have vacation homes. Frank has the UC Neuroscience Institute. This is where he comes for comprehensive, compassionate medical care for Parkinson’s disease, which he has lived with for 15 years. “They make us feel safe,” says Frank’s wife, Sandy.

“It’s an illness where you want to feel safe, because you don’t know what’s coming around the bend.” Frank was a human resources consultant with a frenetic travel schedule when he was diagnosed with Parkinson’s disease at age 52. A friend welcomed him to “the club” with a little golfing advice: “Play a lot now, because in a few years, your game will be terrible.” Parkinson’s is a progressive disorder of motion, where abilities once taken for granted begin to slip away, one by one. So each time Frank began struggling, the expert teams at UCNI’s Gardner Center and Neurosensory Disorders Center stepped in to help get him back on track.

A clinical trial helped him with stiffness and pain in his neck and helped widen his eyes. Deep brain stimulation surgery stilled his hand and leg tremors, calmed the involuntary twitches known as dyskinesias, and made his handwriting legible again. And, most recently, after learning about voice therapies at the annual Sunflower Revolution educational symposium, Frank sought treatment for his bowed vocal cords, which had left him with the ever-so-soft “Parkinson’s voice.”

After surgery, he had only one complaint for his otolaryngologist: “I don’t sound like Sinatra.” Even so, it’s been a very good year for traveling, playing catch with his grandchildren and fantasy football, thanks to his stellar team at UCNI. Frank stated, “When we saw the list of Best Doctors, I think all of them are ours.”

One by one, the symptoms of a throat problem tapped on the pastor’s door. Pastor Brian Tome, leader of Crossroads Church and speaker of five weekly sermons to a following of 15,000, acknowledged the symptoms and tried to dismiss them. He was frequently clearing his throat and coughing, but of course he used his voice a lot. During a motorcycle trip to Alaska, he was chronically hoarse, but of course it was an intense trip with some good times around the campfire. His voice sounded deeper, too, but that can happen to preachers as they age.

Finally, the man who used his voice to serve God and humanity knew he needed answers. A doctor’s scope revealed a tiny cyst on his left vocal cord. Unnerved and fearful, he asked if the doctor could carve out the cyst at once. A delay ensued, and during that time Brian learned more about the delicate qualities of vocal cords and acquired a referral to the Neurosensory Disorders Center. There, further testing revealed the cause of the cyst – acid that was backing up from his stomach – and a microsurgical alternative was recommended by the team.

Using a small metal tube and microscope, the surgeon made an incision, lifted up a microflap of tissue and removed the cyst, preserving the smooth skin on the vocal cord. Following the outpatient procedure, a careful recovery began. During week 1, Brian could not utter a word. During week 2, a stopwatch around his neck, he could speak for only 10 minutes of every hour. “We should all have this discipline,” Brian reflects. “Before speaking, I had to ask myself, is this worthy of my 10 minutes?”

Normalcy returned quickly. By week 6, just in time for Advent, he was back in the pulpit, using a voice of renewal to encourage, motivate and renew.