Sharing Mayo Clinic - January 2014 Archives

In one brief statement, Barbara Smith can sum up the impact that the staff in the Department of Neurology at Mayo Clinic in Arizona had on her and her husband as they faced several difficult and frightening medical problems: "They are our life-changing heroes."  For 40 years, seizures were just part of life for Barbara. Dealing with them since she was a teen, she always assumed they were caused by epilepsy. But in 2007, the seizures became more frequent and more severe. At the same time, Barbara began having other problems, too. She developed a stutter and often had headaches. Walking became more difficult, and she had unexplained weight loss. Barbara went to several neurologists. No one could provide her with answers. In desperation on a Friday evening, Barbara's husband, Jim, called Mayo Clinic to see if they could get an appointment. "That phone call changed my life," says Barbara. Within a week, the couple arrived at Mayo Clinic in Arizona, where Barbara underwent two weeks of evaluation, including five days of observation in the hospital's epilepsy monitoring unit. Part of that evaluation involved using unique imaging technology known as SISCOM, or subtraction ictal SPECT coregistered to MRI. Pioneered at Mayo Clinic, SISCOM is particularly useful in pinpointing areas of the brain where seizures occur.

Esophageal cancer is a challenging enough condition to treat at the best medical centers in the U.S. When the condition affects scores of people in a developing country in eastern Africa, the challenge is all the more demanding. David Fleischer, M.D., a gastroenterologist at Mayo Clinic in Arizona, and his colleagues, working in collaboration with Mayo Clinic in Minnesota, the National Institutes of Health (NIH) and Tenwek Hospital in Bomet, Kenya, were focused on a noble charge: to work with physicians and staff at Tenwek to intervene early when patients exhibit symptoms that could lead to esophageal cancer. Dr. Fleischer notes that in many patients with esophageal cancer, the disease is so advanced by the time they present to a physician that only palliative care is possible. In many medical centers such as Tenwek, where several new cases of esophageal cancer are seen each week, the standard of care has been to outfit patients with a tube (stent) in the throat to assist with their swallowing. However, “swallowing a tube is not a cure,” he affirms.

The first sign something was wrong came when Dennis Chavez was out hunting caribou with his wife, Maria. The Wasilla, Alaska, native suddenly found that he couldn’t cover ground like he used to. He quickly became winded — much more quickly than he expected. He ignored the signs for a while. But one day a few weeks later, he found he could barely make it up a flight of stairs. He was breathing hard. His face was gray. His wife and daughter knew something was wrong. They got him on a flight to Anchorage, where after a series of tests and a biopsy, his doctor determined that his heart was enlarged and his lungs were hardening. Then his lungs collapsed. The diagnosis was Langerhans, a rare disease where, according to the National Institutes of Health, immune system cells build up in the body causing a range of problems, as well as pulmonary hypertension. He would need a double-lung transplant. Chavez's doctor in Anchorage told him he was going to need to be seen at a larger medical center equipped to do transplants and handle a complex case like his. Chavez and his wife did some research and decided their first choice was Mayo Clinic. What they learned was reinforced by his doctor. "My doctor said, 'Mayo Clinic is the best place in the world,'" Chavez says. "I wanted to go to the best place. Getting to Mayo Clinic, it turned out, wasn't going to be so easy.

A routine colonoscopy in 2007 saved Richard Rubenstein’s life. Richard, a retired executive from Scottsdale, Ariz., had expected to receive a clean bill of health, especially since he had no alarming symptoms or any family history of colorectal malignancies. Instead he received shocking news – he had stage 3 rectal cancer. Richard decided to pursue his treatment at Mayo Clinic in Arizona. Specialists recommended radiation treatment and chemotherapy prior to surgery, with the hopes of reducing his four-centimeter tumor. The treatment proved successful and surgeons removed a significantly smaller mass. More chemotherapy followed and ultimately he had a final surgery to reverse his ileostomy.

Ginette Weiner began her fight against breast cancer in 2008, and underwent surgery, chemotherapy and radiation therapy. She is a patient at Mayo Clinic in Arizona and under the ongoing care of Donald Northfelt, M.D. She brings a fresh, honest and engaging perspective to patients and their loved ones with the following advice for breast cancer patients and their families. Advice for Loved Ones 1.  Do not tell us cancer or things like it "happen for a reason." A well-meaning family member said this to me shortly after I was first diagnosed. It literally took my breath away, and left me feeling cold and numb. We feel as if we're already being somehow "punished" by the universe as it is. Telling us there is a "reason" we have cancer is not helpful. (Did I get cancer because I'm a bad person?) I don't believe my cancer happened for a "reason." It just happened. Better to say things like, "I'm sorry this happened to you," or "It must feel so unfair, I'm sorry." And leave it at that. 2.  Create a safe atmosphere (non-judgmental, non-critical), for us to be allowed and encouraged to vent, rage and share the wide range of feelings we have, some of which may be seen as childish, fearful or irrational. Practice becoming a good listener. Allow for silence. You can silently be there for us sometimes, unconditionally accepting of us. Men often feel they have to help, to "fix it." You don't have to fix it. Being quietly there and letting us know you're there for us for the long haul, regardless of whether we're sad or angry, these things are helpful.

I had been to so many different doctors for my shoulder pain. Was even told it was all in my "head," but my husband and I continued searching for answers. We came to Mayo Clinic in Florida, they ran all kinds of tests, they believed my pain. After all those tests, I was diagnosed with thoracic outlet syndrome. In my mind I was like okay, good, but please explain to me what I have been feeling. And he did. Dr. Daniel Montero, my Orthopedic doctor took excellent care of me. He never gave up hope for me, that I would recover from this issue. We decided to do physical therapy, so I visited there Physical Therapy team, and they treated me with excellent service. So for a time, we did several long sessions to see if it would work, and it did for a time. Then we moved on to a pain management team, and Dr. Peter Dorsher. We started injections on the neck to relieve pressure, but to no relief. I remember that day when Dr. Montero saw me to give me results of an MRI. He entered the room with a smile -- like we have answers.