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18.01.2016
These treatments could help correct the severe spinal curve that had developed quickly during a growth spurt, her doctors said.
The Christophersons learned about Camden's condition shortly after a family move put her in a different school district. Designed to treat moderate to severe scoliosis, vertebral body tethering typically is recommended for adolescents during puberty who are still growing.
Teresa's investigation took her and Camden to the Philadelphia Shriners Hospital for Children.
In Philadelphia, Camden and Teresa met with surgeons that had pioneered vertebral body tethering. Although it's possible vertebral body tethering may be the last treatment Camden needs for scoliosis, the long-term results for the surgery aren't clear yet because the procedure is so new.
From Teresa's perspective, it wasn't an easy road, but the effort to find an alternative solution for her daughter was well worth it. For 33-year-old Tara Brigham of Jacksonville, Florida, living with a heart condition since birth wasn't something that was going to get in the way of living an active normal life.
A Minnesota native, Tara was diagnosed with enlargement of the heart during a routine checkup when she was 1 year old. Tara's heart was monitored closely by her doctors at Mayo Clinic and later a hypertrophic cardiomyopathy specialist at the University of Minnesota. Despite the scare and a challenging recovery, Tara resumed her life, finishing high school, attending college and graduate school, and getting married. Tara is grateful that her transplant has enabled her to experience so much more of her life. Audra Popp has a rare tumor – anaplastic pleomorphic xanthoastrocytoma, also known as anaplastic PXA. Audra had 20 proton beam therapy sessions to try to destroy fast-growing cells possibly left behind after surgery. After Audra's fourth surgery, her surgeon initially suggested radiation therapy, but that wasn't in the cards. After Audra's most recent surgery, her Mayo Clinic team had a new weapon in their arsenal – proton beam therapy. A registered nurse, Audra lives in Royalton, Minnesota – a three-hour drive from Rochester. Audra had proton beam therapy in the summer – her favorite season – and took full advantage of her time in Rochester. Raegan Cury didn’t worry at first when she developed a cough in early 2002 that wouldn’t go away. Even her husband, a pulmonologist, wasn't too worried, until she received a surprising diagnosis. Raegan, who lives in Atlantic Beach, Florida, had surgery to remove the cancer and woke up with just one lung, due to the extent of the disease. But they also headed to Mayo Clinic's campus in Florida to explore the possibility of lung transplantation.
A lung restoration center under construction on Mayo Clinic’s Florida campus could change that by making many more donor lungs viable for transplant. Growing up on a farm in central Florida, Paige Douglas enjoyed a unique childhood, caring for a menagerie of animals, horseback riding, even barrel racing at local rodeos. But, when she was 10, Paige inadvertently hit her left knee while bouncing on a trampoline. Her knee became so sensitive that the slightest touch or inadvertent bump would “bring excruciating pain, sending me to the ground, screaming and crying,” she recalls. Paige visited countless doctors near her home in Ocala, Florida, trying different medications, topical treatments and steroid injections. The team developed a customized treatment plan for Paige aimed at not only removing the cancer but saving her leg. To help bring awareness to others about sarcoma, Paige created “Team Paige,” an online support group. Last fall Paige nominated the Mayo team for the Sarcoma Alliance 2015 Outstanding Care Award. Stewart Rosen was beyond anxious when he learned he had a tumor the size of a walnut by his right ear.
Stewart noticed a change in his hearing in his right ear, and a friend had recommended he see an ENT (ear, nose and throat) specialist. Acoustic neuromas are noncancerous, usually slow-growing tumors that develop on the main nerve leading from the inner ear to the brain.
Much to Stewart's surprise, his Mayo Clinic doctors told him they'd had a cancellation and could perform his surgery the next day.
Stewart continues to be checked to make sure his acoustic neuroma doesn't recur – a very slight possibility.
Our daughter, Mallory, was born with several congenital defects known cloacal exstrophy (OEIS – omphalocele, bladder exstrophy, imperforate anus and spinal defects) found in 1 and 400,000 live births. We instantly became patients of the Maternal Fetal Medicine team and were both closely monitored until birth.
The defects identified at birth were more serious and complicated than originally predicted through prenatal monitoring.
Our family has lived, witnessed and felt Mayo Clinic’s mission and values firsthand, and continue to experience it on a regular basis. Mallory has endured four major surgeries (largest surgery – six hours on day 2 of life, involving 3 specialists teaming up to complete reconstruction of bladder, pelvis and bowels), multiple MRIs, hundreds of procedures, and numerous appointments. Learn more about Mayo's Neonatal Intensive Care Unit and the Mayo Clinic Children's Center. These words from His Holiness the Dalai Lama resonated with Mayo Clinic staff and guests gathered to hear a special talk on "Compassion in Health Care" on Monday, Feb. His Holiness the Dalai Lama spent a good deal of time in his talk emphasizing the "sameness" of all human beings. In a world of 7 billion people, the Dalai Lama says it is important to educate people that we are all human beings. When we feel anger or irritation toward someone else, it is important to ask ourselves whether that person has been our "enemy from birth," according to the Dalai Lama.
The Dalai Lama offered his advice for dealing with a patient who has received a difficult diagnosis.
He also noted it was important to be honest with a person about a diagnosis, so that person can be prepared for the consequences.
Biased: While a person may have compassion and loving kindness, it may be limited to those that they are related to or only people they know.


Unbiased: Through awareness, 7 billion people can come to think of each other as brothers and sisters and to realize that their futures are interlinked. Even though she's just 24 years old, Megan has had a lifetime's worth of trials and tribulations. At the age of 21, just two months after Megan married her high school sweetheart, she was presented with another challenge.
Megan would require an extended course of chemotherapy to shrink the tumor before she could have surgery to remove it. Soon afterward, she was dealt another blow – one that must have been especially painful for someone who just completed cancer treatment.
Being diagnosed with bile duct cancer that eventually necessitated a liver transplant wasn't enough to keep Steve Woodford down for long. Back home, Steve was evaluated by a gastroenterologist and diagnosed with bile duct cancer, rather than hepatitis C, in February 2014. Steve's doctor recommended he contact Mayo Clinic in Jacksonville, Florida, to see if he could be evaluated and listed there, since the wait time for a donor liver might be shorter in the Southeast. After a thorough evaluation by the transplant team at Mayo Clinic's Florida campus, Steve was placed on the liver transplant list in Florida.
Less than two weeks after his wife's breast cancer surgery and after being listed for a donor liver for five months, Steve received his new liver on Jan. Four months after the transplant, Steve and Maria hitched up their fifth-wheel trailer and set out to visit the five states in the U.S. Now, a year after Maria's breast cancer surgery and Steve's liver transplant, both are doing well and have mostly resumed their active outdoors lifestyles. But sometimes your name or some of your personal information is so similar to someone else's that doctors' offices or hospitals can have a hard time identifying your records correctly. This procedure corrects the curve of the spine by connecting two or more of the spinal vertebrae.
Larson at Mayo Clinic, they discussed a variety of possibilities, including the VBT procedure. The surgeon attaches a cord to each of the screws and then pulls and secures the cord, so the vertebrae are cinched together on one side and splayed open on the other, correcting the curve. Shriners Hospitals for Children and Mayo Clinic have a close relationship that dates back to Mayo Clinic's founders.
At this time, though, it looks to be an encouraging step forward in the scoliosis treatment choices available to teens like Camden, who is happy she had the opportunity to give it a try. In fact, she says the heart transplant she received six years ago as a result of her condition has made her life even more fulfilling. While she had not had any symptoms of a heart problem since birth, the enlargement was significant enough that her physician at Mayo Clinic's Rochester campus suggested that a biopsy of her heart should be done right away. Over time, she became increasingly symptomatic as her heart failure worsened, and Minnesota winters were especially difficult. She is currently a medical librarian at Mayo Clinic's Florida campus, and she has been healthy and has led a fairly normal life in the six years since her transplant.
She's had five craniotomies since 2001, and she has a scar from her right ear to the crown of her head as evidence. Buckner says a genetic alteration in the tumor that was removed in Audra's last surgery showed a mutation that makes the tumor cells more vulnerable to a new drug combination.
She explored the area with tours of Mayo Clinic's historical homes and buildings, a walking food and history tour, a trolley tour and concerts by the river. She was a healthy young woman, athletic, a former gymnast, and her initial chest X-ray showed what looked like pneumonia. Mayo Clinic transplants more organs than any center in the United States, and the Florida campus is one of the nation’s leading lung transplant centers. During Reagan's lung transplant in 2004, he washed her remaining native airways with a chemotherapy solution to try to prevent any remaining cancer cells from inhabiting Raegan’s newly transplanted lung. The next year, the lung allocation system changed, and the guidelines stated that outcomes for patients with Raegan’s disease were considered too uncertain to warrant transplant of a precious donor lung. The center, now under construction, could make enough lungs available to enable transplants for people who currently don’t meet the waiting list criteria.
She had synovial cell sarcoma, a soft-tissue cancer that typically occurs near the joints in the arm, neck or leg in young patients.
Despite the 250-mile distance between her home and Jacksonville, Paige chose to undergo the treatments at Mayo. According to the organization, the award is usually presented to one individual but Paige’s nomination moved the group so much that it honored everyone. And with the surgery he'd need to remove this tumor, Stewart knew that he'd lose hearing in his right ear. That doctor detected a major difference in hearing between Stewart's ears and ordered an MRI to rule out a brain tumor. After Mallory’s 20-week gestational ultrasound, we were referred to Mayo Clinic in Rochester, Minnesota, from Mayo Clinic Health System – Red Cedar in Menomonie. In the beginning, we wondered how these abnormalities were missed in the extensive prenatal monitoring. We are thankful for Mayo Clinic and know that its clinical practice, education and research saved Mallory’s life and continues to give us a bright outlook for the future. She’ll have medical challenges throughout life, but with the gift of Mayo Clinic, she is well on her way to living a happy, healthy and “normal” life. We are thankful for strong dedication at all levels (Appointments, coordinators, social workers, HUCs, Housekeeping, CNAs, Child Life, nurses, NPs, flight crews, residents, fellows and consultants).
The monk had spent five years as a hermit in the mountains with very little by way of physical comfort.
He advises people to then familiarize themselves with those positive emotions and train themselves to focus on those emotions. But a series of events, medical and otherwise, led her on a different path – an educational path that culminated with her sharing her surprising story at the Fiesta Bowl in Arizona on Jan.
The chemotherapy cocktail was so powerful that Megan was cautioned not to kiss her new husband, as the side effects could be passed onto him.
Doctors found Megan had a rare gene that causes Li-Fraumeni syndrome, which affects only about 400 people in the U.S. Still, Megan prefers to discuss the upside of her journey -- her supportive family, friends and Mayo caregivers who have encouraged her through her trials.
She has a passion for educating others about the gene that has changed her life — and she wants to be there for young adults or children who are going through the same thing. A South African native living in Utah, Steve is professional skydiving instructor, backpacker and canyon guide in Zion National Park.


He was told the cancer was inoperable and incurable. He was put on chemotherapy, underwent radiation therapy, and had a stent inserted in his bile duct, in an unsuccessful attempt to solve a drainage problem. Although Steve was placed on the waiting list in Utah for a liver transplant, the wait time in that region would be one to two years, and it was doubtful he'd survive long enough to get the organ he needed. He and his wife, Maria, packed up their RV and temporarily moved to Jacksonville to be near Mayo Clinic, where he continued treatment as he awaited a new liver. In fact, Steve attempted a world-record night skydive in Arizona over the 2015 Thanksgiving holiday, with 52 jumpers participating in the event. It's a dangerous and costly problem that can lead to missed diagnoses, inappropriate treatments or unnecessary tests, as well as making it difficult for your doctor to share information with your other health care providers.A solution? So when doctors told her, at age 13, that she had to wear a brace for 22 hours a day to combat scoliosis, and surgery to fuse her spine was likely in her future, Camden was devastated. And her mother, Teresa Christopherson, wasn't ready to accept that a brace and fusion surgery were her daughter's only choices.
She was fitted for a brace, but due to the severity of her condition, her doctors were concerned it wouldn't be enough to correct the problem. Metal screws and rods typically are used to hold the vertebrae together, so they can heal into one solid unit.
In 2015, Shriners Hospitals joined the Mayo Clinic Care Network, a national network of organizations committed to better serving patients and their families through physician collaboration. She was diagnosed with hypertrophic cardiomyopathy, a disease in which the heart muscle becomes abnormally thick. Tara went into ventricular fibrillation and was taken to the hospital where an automated external defibrillator, or AED, was used to restore her normal heart rhythm.
Audra is the first person at Mayo Clinic with anaplastic PXA to be treated with proton beam therapy. She also took advantage of classes offered at the Mayo Clinic Cancer Education Center, including tai chi, Reiki, nutrition, meditation and stress management. Mayo Clinic is collaborating with United Therapeutics, which has developed technology to sustain and rejuvenate donor lungs, making previously marginal lungs suitable for transplantation and extending the time lungs remain viable.
After an exploratory surgery in 2001, doctors told her she had a neuroma, an area of increased sensitivity and pain that often develops after physical trauma to a nerve. She made a five-hour roundtrip five days a week for five weeks. “It was hard but I wanted to maintain a sense of normalcy for my family and I trusted this team … doctors who care, show compassion, and genuinely took time to know me as a patient,” she says. But Stewart, an accountant by day and violinist by night, worried that removing the tumor, an acoustic neuroma, might affect his ability to play music. It was explained that Mallory’s condition of OEIS is so rare that the Maternal Fetal Medicine team did not know to even look for that type of defect. Almost every person on Mallory’s team was unfamiliar with her condition of OEIS, but no one ever feared the unknown.
From the day she was born, Mayo Clinic has given us hope and realistic solutions to her “never seen before” problems. When you read about her on paper, you expect to notice great physical abnormalities, but to the untrained eye, she is a happy, healthy, thriving toddler.
He says he is impressed with Megan’s resiliency and ability to understand what her treatment program would require.
Curtis were invited to watch the game from a suite at the stadium in Glendale, Arizona, and a brief video of her story was shown on the big screen. Almost 8,000 miles and four months later, they have now been in 49 States after visiting Michigan, Minnesota, Wisconsin, North Dakota and South Dakota.
The finding was surprising, because a year earlier, an exam showed no signs of spine problems.
Because this is a new procedure that hasn't been in use long, though, Teresa wasn't ready to commit to it without doing some additional research.
Together, the team conducted the procedure through five small incisions on Camden's right side. The thickened heart muscle can make it harder for the heart to pump blood throughout the body to vital organs. Unfortunately, her heart failure was progressing rapidly, and in June 2009, she received a ventricular assist device.
She also has had three regimens of chemotherapy through the years and six weeks of radiation therapy at Mayo Clinic in 2007. Murray and Perdikis followed, reconstructing her leg with tissue and muscle grafts from her calf. Today Paige has a 14” scar but complete use of her left leg. Express concern and let the person feel that the person is really taking care of them seriously. Getting sick unexpectedly during a backpacking trip to Belize two years ago seemed like just another challenge he had to overcome. Along the way, Steve had surgery at Mayo Clinic's Rochester campus for a bilateral hernia, which put him back three months in his plan to resume skydiving.
That's why the American Health Information Management Association (AHIMA), the national organization of health information management professionals, has started an online petition asking for a voluntary patient safety identifier. Guided by images from a tiny camera inserted through her back and using a technique called intraoperative low-dose CT computer navigation, the surgeons inserted the screws and cord into Camden's spine without needing a large incision or causing any significant muscle damage.
Eventually, she had an implantable cardioverter defibrillator implanted to provide an immediate treatment for any future episode. The device allowed Tara to recover and be healthy enough to be put on the heart transplant list. He did his first jump since his transplant in October 2015, instead of July as he'd planned.
A voluntary patient safety identifier is something you could create and would allow medical systems to recognize you quickly and accurately when accessing your information. It will help ensure all your health information is kept together and is complete, all the while remaining under your control.The petition will encourage our leaders in the federal government to engage with experts in the private sector who have experience in accurately identifying people, as they do in banking and other financial businesses, along with security experts. With 80 percent of doctors and 97 percent of hospitals currently using an electronic health record, having a way to accurately and safely exchange information can make health care more safe and effective."The voluntary patient safety identifier - created and controlled by patients - will be a complete and positive game-changer in health care in terms of patient safety, quality of care and financial consequences," says AHIMA CEO Lynne Thomas Gordon, MBA, RHIA, CAE, FACHE, FAHIMA. Among these were 2,488 different patients named Maria Garcia and 231 of those shared the same birth date.That's why people from across the country are supporting a petition that asks the Obama administration to join with the private sector to discuss a voluntary patient safety identifier.



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