Sharing Mayo Clinic

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Mar 24, 2014 · Overcoming Epilepsy

Hi Laura, Yes, our Neurology department does see patients with complex parcial seizures/secondarily generalized seizures. Here is some information about a recent study that was done. If you would like to make an appointment please contact the appointment office at 507-284-2111. Thank you.

http://newsnetwork.mayoclinic.org/discussion/mayo-clinic-experts-available-to-discuss-new-epilepsy-therapy

May 18, 2012 · New Device Helps Man Who ‘Forgets’ to Breathe

David Vannausdle, his parents and Dr. ReevesHis whole life, David Vannausdle, 32, of Granger, Iowa, has been tethered to some type of breathing device for at least some part of the day or night. 

Without external assistance, his body “forgets” to breathe. He was born with congenital central hypoventilation syndrome, also referred to as Ondine’s curse. Essentially, the brain fails to signal the lungs to breathe. 

Thanks to a pacing device implanted at Mayo Clinic last fall, Vannausdle is breathing well on his own.

“When David returned for follow-up after his pacer implantation, he was bright and conversational,” says Ronald Reeves, M.D., a physical medicine and rehabilitation specialist at Mayo Clinic in Rochester, Minn. That contrasts dramatically with Dr. Reeves’ first meeting with Vannausdle. “Due to the high level of carbon dioxide built up in his system, he was so sedated he could barely talk with me,” he says. 

Robin Vannausdle, David’s mom, says the device has been a life changer. “He can go places without having to take so much equipment,” she says. “David is more energetic and his personality has changed. He’s much happier.”

As a child, Vannausdle was tethered to a ventilator’s 10-foot hose all the time. As he got older, he used an oxygen tank during parts of the day and the ventilator at night. About 10 years ago, Vannausdle transitioned to using a BPAP (bilevel positive airway pressure) machine, which pushes air to open the airway. Last year, his hometown physician mentioned the diaphragmatic pacing system available at Mayo Clinic in Rochester.

The system is implanted in a minimally invasive procedure. Tiny electrodes are placed on the diaphragm, the main muscle used in breathing. Wires connect the electrodes to an external batterypowered device about the size of a large remote control. The implanted electrodes stimulate the diaphragm to contract and expand, allowing air to fill the lungs. Patients who use the system can reduce or end their need for a ventilator over time.

“All these years, I’ve thought this is just the way it has to be, with David hooked up to a machine at night. We never thought it could be this good,” says his mother.

The article comes from our Sharing Mayo Clinic print publication. 

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May 9, 2012 · Rehab Program Helps Texas Teen Learn to Manage Chronic Pain

Austin HortonAustin Horton’s adolescence was dominated by pain. More than a dozen specialists — among them an orthopedist, rheumatologist, pain doctor, psychiatrist and acupuncturist — couldn’t offer much relief or even a definitive reason for the pain.

Relief finally came from the Pediatric Pain Rehabilitation Program at Mayo Clinic’s Rochester campus. “It helped me get my life back,” says Horton, now 19 and a freshman at the University of North Texas in Denton. “I learned I’m in control of my body, not the other way around.”

Horton’s pain started when he was 10, with achy feet and knees after baseball games. “He played baseball through middle school, and pain became more of an issue,” says his mom, Terilyn Horton, of Spring, Texas.

Horton says his knee pain was like a “constant toothache, with sharp pain.” He quit baseball when he was a freshman, hoping the pain would ease. It didn’t. By his junior year, it hurt too much to go school. Pain and isolation led to depression.

“We literally saw Austin fading away, and we knew we had to do everything we could,” says his mother. Someone mentioned Mayo Clinic as a place for patients with complex health concerns. In July 2010, Austin, then 17, participated in the three-week outpatient pain rehabilitation program.

The treatment team includes psychologists, anesthesiologists, nurses, physical therapists, occupational therapists, recreational therapists, biofeedback therapists and other specialists who collaborate on recommendations and treatment for each patient.

“The focus changes from finding a cause for the pain to managing the pain,” says Barbara Bruce, Ph.D., a psychologist and clinical director of the pain rehabilitation program. Strategies include physical reconditioning, physical therapy, relaxation training and biofeedback and stress management.

“Austin was diligent and put the strategies to work,” says Dr. Bruce.

“At the end of three weeks, his pain was not gone, but he could manage it.” Horton was able to reduce and then stop pain medications and antidepressants.

During his senior year, Horton went to school every day. He took advanced courses, earning college credit. He got a part-time job washing dishes. After eight-hour shifts of hauling and washing dishes, he says, “I knew I could do most anything I needed to do.”

At college, Horton is majoring in chemistry and planning a career in forensic science. He walks a mile daily to his classes.

Horton says it wasn’t the relaxation tips or breathing techniques or any other ‘tricks’ that made the difference. “The program gave me self-confidence,” he says. “I didn’t think changing my mind could change the pain. But it turned it around.”

The article comes from our Sharing Mayo Clinic print publication.

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May 7, 2012 · Saving Lives by Recruiting Marrow Donors

Carolyn “Ceci” ChristensonCarolyn “Ceci” Christenson, age 18, of Gilbert, Ariz., has already survived a rare, life-threatening blood disorder and become a high-powered recruiter for the National Marrow Donor Program (NMDP).

Her experience inspires Christenson to speak out for patients whose hope for a cure resembles a high-stakes lottery. In December 2011, she appeared on CBS’s “The Early Show” to promote the need for bone marrow donors. Being on the show fulfilled her altruistic request to Make-A-Wish Foundation.

“You feel so helpless because a bone marrow transplant is the only way to fight your disease,” she says. “It’s really scary when you don’t know if you’ll have a match.”

In March 2009, Christenson, then 15 and a high school freshman, had gone to the hospital with bruises, pale skin, fatigue and shortness of breath. A lab test found that only half the normal amount of blood was circulating in her body. She never went back to high school.

“I was too sick and had too little energy and was immune-compromised,” she recalls. “I couldn’t hang with friends. I couldn’t go out in public.”

Over the next six months, frequent hospital stays for blood infusions and treatment of blood clots and various infections finally led to a diagnosis: myelodysplastic syndrome (MDS), which caused her blood cells to die prematurely.

The only known cure was a bone marrow transplant. Roberta Adams, M.D., Mayo Clinic medical oncologist and director of the combined Mayo Clinic/Phoenix Children’s Hospital bone marrow transplant program, began the search for a donor by testing Christenson’s family members. Christenson was one of the fortunate few with two matches — her older brothers, Allan and Ryan.

In December 2009, Dr. Adams transplanted healthy stem cells from Ryan’s bone marrow into his sister, where they started producing blood cells.

“I’m cured. I’m MDS-free,” Christenson says. But recovery has been a slow, unsteady process. She developed a complication when the transplanted cells and her own cells waged a battle of immune responses. In May 2011, she started an 18-month outpatient treatment at Mayo Clinic, where withdrawing her blood and exposing it to ultraviolet light quiets the cellular unrest.

“It has worked so well. I am thrilled,” says Christenson, now able to socialize again. She recently enrolled at a community college and plans to major in journalism at Arizona State University.

“MDS turns your life upside down,” Christenson says. “I’m so excited to be moving on.”

Through her medical crisis, Christenson learned about the need for donors. According to NMDP (marrow.org), more than 10,000 U.S. patients a year are diagnosed with life-threatening diseases for which a marrow or umbilical cord blood transplant from an unrelated donor may be their best or only hope of a cure.

About 70 percent of patients who need a transplant depend on the NMDP’s “Be The Match” registry for a donor. Minorities are vastly underrepresented in the registry. “In 2010, less than four out of 10 patients of all ethnic groups received the unrelated transplant they needed,” says Dr. Adams. “To improve the odds, the more people who join the registry, especially people of color, the greater the chances of finding a match.”

Motivated by her own second chance at life, Christenson has been recruiting for NMDP’s Registry since before her transplant. She created a website (www.cecisclimb.com) to tell her story and encourage others to join the registry.

“Fighting cancer is hard. Finding a match shouldn’t be,” Christenson says.

The article comes from our Sharing Mayo Clinic print publication.

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May 3, 2012 · Pancreatic Cancer Removed via Laparoscopic Surgery

Mindy CahnMindy Cahn is living proof that pancreatic cancer can be beat.

The odds can be daunting. According to the National Cancer Institute, the five-year survival rate for localized pancreatic cancer is 21 percent. For cancer that has spread, the survival rate is about 9 percent.

Cahn, 60, had been diagnosed with a softball-sized cyst on her pancreas 20 years ago. Told it was benign, the West Palm Beach, Fla., mother of three didn’t worry about it.

In August 2011, she mentioned a “weird sensation” and a “dull ache” on the left side of her rib cage to her internist during a routine checkup. An ultrasound and MRI both revealed a large mass. The cyst had doubled in size and would have to be removed. Cahn sought opinions from local surgeons.

One recommended a consultation with Horacio Asbun, M.D., at Mayo Clinic in Jacksonville, Fla. He is one of only a few surgeons in the country with experience in complex laparoscopic surgery of the pancreas.

“I knew this surgery had to be done,” she says, “but since you don’t know what’s going on inside your body, I thought it was important to ask questions to make the best decisions.”

Cahn met with Dr. Asbun and a team of Mayo Clinic specialists in the fall to discuss a new, minimally invasive procedure known as a laparoscopic distal pancreatectomy. “This approach allows for better access to difficult areas,” Dr. Asbun says. “Magnification and specialized instruments allow meticulous removal of suspicious cells.” When performed by a multidisciplinary team of experienced surgeons, the procedure can be as effective as traditional open surgery, and recovery is easier on the patient.

“Our results show multiple advantages to the laparoscopic approach that are not only related to faster recovery and shorter hospital stay, but also decreased blood loss during surgery,” says Dr. Asbun.

On Dec. 14, Cahn underwent laparoscopic surgery. Surgeons made only three tiny incisions in her abdomen. Thanks to the precise technique, Dr. Asbun removed the sprawling mass from her pancreas while preserving the areas of the pancreas needed for enzyme and insulin production.

He also removed her spleen and a small portion of intestine that were affected, as well as 18 lymph nodes. After the surgery, a pathology report confirmed cancer. Fortunately, it was in its earliest stage, and all the cells were eliminated.

Cahn spent only three nights in the hospital. Within six weeks of the surgery she had returned to her normal activities and full-time work as a boutique manager.

“I knew I was in the best of hands,” Cahn says, praising the entire Mayo team for their attentiveness and availability, and the ease with which appointments were streamlined.

Today, although Dr. Asbun considers her cured, Cahn is more conscious about her lifestyle choices. “I have changed my whole diet,” she says. “I’m more aware of my health.” She also makes time to enjoy family, including her 2-yearold grandson.

The article comes from our Sharing Mayo Clinic print publication.

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May 1, 2012 · Quadruple Bypass at Age 24

Ravuth ThorngLast spring, Ravuth Thorng, then just 24, noticed it was increasingly difficult to do ordinary tasks, such as walking to his car.

“I felt out of breath walking from my parking spot to work,” says Thorng, who worked at a home improvement store in Rochester, Minn.

In retrospect, he recalls that during the previous winter, he couldn’t push a shovel full of snow more than five feet before getting chest discomfort and shortness of breath. He shrugged off the chest pain. “At my age, I didn’t think it’d be anything serious,” he says. “I thought it was heartburn.”

He took heartburn medication, but his symptoms worsened. Knowing something was wrong, he went to the Emergency Department at Saint Marys Hospital on Mayo Clinic’s Rochester campus. It may have saved his life.

Diagnostic tests suggested a major problem with his heart. An angiogram, an X-ray test that shows the heart working in real time, confirmed it. Thorng’s arteries were significantly clogged, and the blood flow to his heart muscle was dangerously low.

Arteries are the supply roads that send out oxygenated blood throughout the body. The rivers of blood also carry cholesterol, which are dissolved fats. Over time, some of them stick to the inside of arteries. That buildup can harden and block the flow of blood.

For most people, the buildup occurs over decades. “Severely narrowed or blocked arteries are unusual for someone so young,” says Martha Grogan, M.D., Mayo Clinic cardiologist on Thorng’s care team. His heart was weakened due to poor blood flow, and his symptoms were life threatening.

Dr. Grogan recommended coronary heart bypass surgery. Thorng is the youngest man she has referred for this treatment. Just five days after the diagnosis, Lyle Joyce, M.D., Ph.D., performed surgery to create new channels for the blood to bypass Thorng’s blocked arteries.

Thorng was surprised — but not shocked — at his diagnosis. His father died of heart disease at age 56. But neither Thorng nor his father had realized the significance of their family medical history.

At Mayo, Thorng learned he has familial hyperlipidemia (FH), an inherited condition of extremely high cholesterol levels. When a family history of the condition is known, doctors recommend that cholesterol screening should begin between the ages of 2 and 10. Typically in FH, cholesterol levels climb during the teenage years.

“Early, preventive care measures might help avoid heart attacks and surgery later in life,” Dr. Grogan says.

Now that Thorng knows his risks, he’s making healthier choices. His cardiac rehabilitation team has worked with him on healthy diet choices. The capstone of his ongoing recovery process is better stress management. “It’s a debilitating disease and hard to cope with sometimes, but I’m alive, and I’m happy, and it’s taught me not to stress out about the little stuff,” he says.

The article comes from our Sharing Mayo Clinic print publication.

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Apr 26, 2012 · Still Diving Deep: Heart Repair Keeps Bends at Bay

Scott MartinVeteran scuba diver Scott Martin, 46, and his girlfriend left Florida in July 2011 to celebrate his birthday in Cozumel, Mexico. His experience there changed the way he thinks about his heart and his favorite pastime.

The couple had been in Cozumel for five days, diving twice a day. On the morning of the last day, they made a deep dive. An expert diver, Martin always followed U.S. Navy dive tables and safety protocols.

But shortly after he surfaced, Martin began to lose feeling in his hands and feet. The numbness crept up his legs and arms toward his body. He recognized the loss of feeling as a symptom of decompression sickness, or the bends, a condition that occurs when divers surface too fast and gas bubbles form in their bloodstream.

“I knew everything I did was right,” Martin says. “It didn’t make sense to me what happened.”

He ignored the numbness, hoping it would go away, and went out on a second dive. The next day, the numbness got worse. By then, Martin believed he was experiencing the bends and went to a local hospital.

Fortunately, the hospital had a hyperbaric chamber — a high-pressure room used to treat the bends. The treatment improved his symptoms. But after returning home to Cocoa Beach, Fla., he scheduled an exam at Mayo Clinic in Jacksonville, Fla.

His Mayo Clinic doctor discovered a hole inside his heart. The condition, called patent foramen ovale (PFO), is present in about one in four adults. The hole is natural in newborn babies and normally closes on its own in the first year of life.

“That hole, in adult life, may cause several problems,” says Issam Moussa, M.D., a Mayo Clinic cardiologist who diagnosed Martin. For example, scuba divers with PFO may unexpectedly experience the bends. The hole makes them more prone to developing tiny gas bubbles in their bloodstream that travel to organs and cause a variety of symptoms.

Martin underwent a minimally invasive heart procedure to repair the hole. Two weeks later, he was out running.

“If you are a diver, it is worth asking your health care provider about PFO and other risk factors so he or she can decide if additional tests are necessary,” Dr. Moussa says.

Soon, Martin will be back in the water. He is planning to go diving this spring in Jamaica.

The article comes from our Sharing Mayo Clinic print publication.

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Apr 23, 2012 · Clot-Busting Drug Study Aims to Help Stroke Patients With no Options

Rodney McDougal and his familyCoughing. That is the sound that awoke Jennifer McDougal on the morning on Dec. 28, 2010. Her husband, Rodney, was in the bathroom preparing for work, and coughing. Suddenly, he collapsed.

Rodney, then 42, had a history of hypertension, so Jennifer immediately took his blood pressure. It measured 230/100 — dangerously high. “I didn’t know what was happening. One minute he was fine, the next he was out,” says Jennifer.

Paramedics transported McDougal to a local hospital near their home in Fleming Island, Fla., where medical staff determined he was suffering from an intraventricular stroke — a form of hemorrhagic stroke marked by a sudden bleed into the ventricular system of the brain, often as a result of hypertension. There is no drug to treat the condition, which accounts for about 5 or 6 percent of all brain strokes and is one of the most deadly.

Hearing the news, Jennifer was rightfully scared. “It never occurred to me he was having a stroke,” she says. What she didn’t know was that, McDougal, a self-described workaholic insurance broker by day and volunteer football coach by night, had neglected to refill his blood pressure medication. It was determined later that pressure buildup in his arteries caused one of the vessels to burst.

McDougal was airlifted to Mayo Clinic’s Comprehensive Stroke Center in Jacksonville, Fla., one of four centers in the southeastern United States participating in a national clinical trial to test the first potential treatment for this type of stroke.

Limited treatment options

With a hemorrhagic stroke, blood pools into the brain cavity. But, ultimately, a clot forms that causes additional oxygen deprivation, resulting in irreversible outcomes. “In the past, the only thing we’ve been able to do is stick a catheter in the brain to relieve the pressure and just wait for the clot to dissolve, but it often takes weeks,” says Mayo Clinic critical care neurologist William Freeman, M.D.

The CLEAR III study is comparing two clot-dissolving methods: treatment with a very small amount of the drug recombinant tissue plasminogen activator (tPA) vs. a saline irrigation method that “flushes out” blood clots.

“The drug tPA revolutionized the treatment of ischemic stroke, where a blood vessel supplying the brain becomes blocked,” says Dr. Freeman. “When administered within four hours after symptoms appear, tPA can minimize brain damage due to stroke. We hope to find out if tPA, if given within 72 hours of stroke onset, can also expedite recovery for hemorrhagic stroke patients and provide a better outcome.”

When Dr. Freeman shared the information about the study with Jennifer, she paused — but only momentarily. “I had to make a decision quickly because time was of an essence. But I knew how Rodney felt about studies. He had said once, ‘I don’t ever want to be on a trial.’”

Clinical trial offers hope

But, says Jennifer, her husband couldn’t foresee the dire choices in front of her. “I saw the condition my husband was in, and I had so much faith in Dr. Freeman as he explained this to me. This was life or death,” she says.

She agreed to the trial, and McDougal was treated with tPA. Hopeful, Jennifer gathered with the couple’s two children, friends and family. Within a few days, their prayers were answered as McDougal began responding to the therapy. When he awoke, however, he had no recollection of what had occurred.

“I woke up and saw all these get well cards and was trying to figure out where I was,” he says. “I didn’t know I was in the hospital or what happened.”

Doctors told Jennifer that as a result of the stroke, McDougal could be paralyzed, have speech problems or trouble walking. Today, more than a year later, he still has no memory of the stroke, but no other complications. “I’m feeling great. No problems, no side effects,” he says. His wife notes one change, though. “He’s calmer now,” says Jennifer. And he is more diligent about his medication, too.

“Of course, I text him, I call him, our daughter calls him, we always remind him,” says Jennifer.

And McDougal now embraces the opportunity to talk about research and clinical studies. “I never understood what research and trials were all about until now,” he says. “I am so thankful that this opportunity was offered to us. I definitely recommend research and trials because it’s an opportunity to not only get the help needed but also down the road could help save someone else’s life.”

Dr. Freeman continues to be amazed by McDougal’s recovery and says he is hopeful about the future of the tPA therapy. Preliminary study data is positive, with death rates declining. “If the CLEAR study continues to show significant improvement in patient outcomes, it could transform the future care of intraventricular hemorrhagic stroke care the same way tPA changed ischemic stroke therapy in the 1990s,” he says.

The article comes from our Sharing Mayo Clinic print publication.

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