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Dec 30, 2012 · Multifocal motor neuropathy

Cecilia VangorpCecilia Van Gorp woke one morning to find that she had lost movement in her right hand.

“I immediately called the doctor, fearing I had had a stroke,” says Van Gorp.

A visit with her doctor ruled out a stroke. Several appointments with specialists and numerous tests followed, but didn’t bring her any closer to a diagnosis.

As the weeks passed, Van Gorp’s right hand would sometimes clench up, then eventually release. The muscles in her arm were beginning to atrophy, and she was losing strength in other limbs as well.

Finally, a specialist suggested that Van Gorp might have ALS, or Lou Gehrig’s disease. He offered to refer her to an ALS specialist at Mayo Clinic or another medical facility. She chose Mayo.

“I had a brother-in-law who had lung cancer,” she says. “He went to Mayo and they treated him so well. My sister could not say enough good things. I just felt that it was the right place to go.”

Nearly a year after her initial episode, Van Gorp began three days of tests at Mayo Clinic in Rochester, Minn., with neurologist Brian A. Crum, M.D., including blood tests, an MRI, extensive EMG sessions and an overnight sleep study.

When the tests were completed, Dr. Crum told Van Gorp that she had a condition called multifocal motor neuropathy (MMN) — a treatable peripheral nerve disorder, whose symptoms mimic those of ALS.

Van Gorp has this advice for those who are concerned they may have MMN or ALS:

“I would strongly suggest they ask for a referral to Mayo,” says Van Gorp. “I have been to other medical centers for other types of treatments and I received good care, but I never felt that they were as thorough. Mayo is a wonderful place to get your questions answered.”

Dec 29, 2012 · Scuba diving and fine dining are still on the menu for Miami man with neck cancer

John SavianoRespiratory health is important to John Saviano, a man who has led a healthy life, who doesn’t smoke, and who drinks only moderately. For years, he routinely made annual visits to two physicians. He saw his regular physician for basic check-ups. Because scuba diving is one of the Miami Beach man’s hobbies, he also saw an ear, nose, and throat specialist to determine that his nasal and ear passages were open to ensure safe diving and snorkeling. In 2003, however, a persistent sore throat sent him for an extra visit with his regular ENT physician.

The diagnosis was adult tonsillitis, and the initial treatment was antibiotics. When that treatment brought no improvement, his physician performed a tonsillectomy. John found recovery from that surgery painful and slow. After several weeks of pain, and further visits to the ENT surgeon, it was apparent that something was still wrong. As John put it, “My tonsil grew back.” Something was in his throat and could easily be felt.

At a follow-up visit, a month or so after the initial surgery, the ENT physician was startled to see a strange growth where the left tonsil had been. He said, “That doesn’t look good,” and called in his associate. When asked if he’d ever seen anything quite like that, the associate said “No.”

John asked them, “So what is it? Cancer?” Both doctors were taken aback, and said they didn’t believe so. Nevertheless, the ENT physician scheduled a biopsy. The diagnosis was cancer, which John says is “not the best thing to hear when coming out from under anesthesia.”

Further tests indicated that the tonsil tumor had metastasized into the left neck, where another tumor was located. The ENT specialist referred John to a local hospital’s cancer center. John met with a team of doctors, who outlined a course of treatment. Trying to learn just what he was facing, he asked about his prognosis. He was told that, based on his diagnosis, he had a 60 percent chance of surviving two years. That was when the seriousness of his situation sunk in.

John’s personal physician told him that even though it was an excellent hospital, he should get a second — even a third — opinion for anything so serious. A consultation at a local university medical center specializing in cancer resulted in a recommendation for a course of treatment radically different from the first.

John and his wife were perplexed. He faced a serious disease, and two teams of doctors were advising two extremely different treatment regimens. It was difficult to know what to do. While pondering the two opinions, John talked with his friend and business associate, Richard. Richard, in turn, discussed John’s dilemma with his father, whose law practice involves an extensive network in the medical community. Richard’s father made some phone calls.

At the end of that hectic week, John received a phone call from a surgeon at the Mayo Clinic in Rochester. The surgeon began the call with, “I understand you have a problem. Tell me about it.” John described his cancer and the two differing treatment regimens recommended. At the end of their conversation, John asked, “What do you suggest?” The surgeon responded, “Can you be here Monday?”

John arranged plane tickets, and a few days later he and his wife were in Rochester, Minn. They had consultations with the three physicians assigned to John’s case, an ENT head and neck surgeon, a radiation oncologist, and a medical oncologist. John describes his experience at the Mayo Clinic as “so different” from the previous hospitals. The levels of professionalism, efficiency, coordination, integration — even simple politeness — were a world away from John’s previous hospital experiences. “Mayo Clinic should be the example that all medical establishments should strive to emulate,” he says.

Surgery was a possibility, but with the cancer so close to the base of the tongue and vocal chords, the team said it was almost impossible to predict surgery’s effect on speaking and eating. Because of the potential for damage, they decided on an aggressive course of radiation therapy and chemotherapy to shrink the tumor.

With his treatment projected to take at least two months, John and his wife had to determine how to take care of their small business during their time in Rochester. They arranged a two-month lease at a hotel that is connected to Mayo Clinic by a pedestrian tunnel. Then they returned to Florida to pack up the office and communications essentials they would need in Rochester while John was being treated. John discussed the situation with the company he owns, and his co-workers agreed to fill in for him in his absence.

Treatment began just before Thanksgiving 2003. The physicians on his team told him that radiation could be considered in three phases: “the first barely recognizable, then distinct discomfort, and finally absolute misery.” For John, though, “The chemotherapy had an instant effect. Food rapidly lost its taste and nausea was immediate. The first week was all about finding which medications would control the nausea.” The team introduced John to a speech and swallow pathologist, who would monitor any damage that might occur due to radiation.

John had never had much medical treatment, so the severity of the radiation and chemotherapy was quite a surprise. He says, “Radiation is a rather barbaric form of treatment, but it’s about the best there is.”

Although he has vivid memories of the difficulties, he says that the care shown by the Mayo staff made a real difference. “At every level — nurses, doctors, administrators, assistants, volunteers — throughout the organization I was treated with professionalism and kindness.”

John will never forget being examined about a third of the way through his treatment, when an endoscopic examination showed that the tumor was shrinking significantly. At that point, the radiation oncologist told him that the way things were looking, he would probably be in the 90th percentile. “A great thing to be told, right around Christmas.”

Although the news cheered him, the chemo made it impossible for him to taste — and thus enjoy — food. Coupled with the oral pain caused by radiation, eating was becoming increasingly difficult. His diet began to consist primarily of baby cereals, soups, and liquid supplements. For a person who enjoys fine dining, and frequently traveled to enjoy it, that was a real shock.

Weight loss was inevitable. John has always been thin, but now he became almost skeletal. The team kept an eye on that. “If my weight dropped by more than 20 percent, they would have to consider the dreaded stomach tube. Fortunately, I was able to avoid that much weight loss, but not by much.”

At the end of the two-month treatment regimen, everything looked good — in his throat, at least. “My looks were something else. In addition to the looking almost skeletal, the radiation had burned off the hair below my ears. I had sort of a ‘Moe Stooge’ look. Vanity had to go out the window.”

After six weeks of recovery at home in Florida, John and his wife returned to Rochester for surgery. The team needed several throat biopsies to determine whether any microscopic cancer remained, and they wished to analyze the remaining metastatic tumor mass in a lymph node in the neck and remove all soft tissues where cancer could be hiding. But there was no detectable cancer in the throat, and the secondary tumor in the neck was completely necrotic (dead). After four difficult days, he was released from the hospital. Soon after that he and his wife were on a plane back to Miami.

During the next few weeks he focused on getting enough nutrition to begin restoring his weight, a task complicated by the radiation damage to his salivary glands. Other programs helped him deal with the aftereffects of radiation therapy. John entered a 40-day hyperbaric oxygen treatment program and spent two hours a day in a pressure chamber. At the same time, he received physical therapy to heal and recondition his weakened body. He also enrolled in a program of Tai Chi/Qigong. “All that seemed to hasten the healing process,” he says.

For the first two years after completing his treatment, John had follow-up visits every three months. Now he goes twice a year. Four years after the diagnosis, he remains cancer-free.

“After about a year, I started to feel a bit like my old self,” he says. “By the end of the second year I felt somewhat back to normal. Reaching that two-year point felt like a big accomplishment. My next goal is five years cancer-free.”

John is convinced the key to success was the team at Mayo Clinic. He doesn’t like to think what might have happened had he not received that phone call that day.

Dec 29, 2012 · An Arm-lifting Success Story

Harper BlommersLori Blommers used to cry at dance recitals. She knew that her youngest daughter, Harper, would never join the girls on stage because of injuries suffered at birth. Today, Harper is happily dancing away, thanks to an unusual surgery at Mayo Clinic that allowed her arm to move more freely.

When Harper was born on Aug. 26, 2004, she became stuck in the birth canal with only her head delivered. The pulling and the pushing after 27 hours of labor damaged Harper’s collarbone and severed the brachial plexus nerves from her left arm.

The brachial plexus is a network of nerves extending from the spinal cord that controls muscle movement and sensation in the shoulders, arms and hands. About 1 in 2,000 babies born in the United States suffer brachial plexus injuries at birth. “It’s primarily a problem of big babies trying to get out of small moms,”says Mayo Clinic pediatric orthopedic surgeon William Shaughnessy, M.D.

Doctors told the Blommers that about 80 percent of babies recover complete use of their arm within the first year. When Harper failed to improve, Lori and her husband Chris looked for help. “There were no doctors in Iowa who knew how to work with those injuries,” Lori says. They turned to the Internet for information. Friends from the United Brachial Plexus Network eventually referred them to Mayo Clinic, where in December 2005 they met with Mayo orthopedic surgeons Alex Shin, M.D., Allen Bishop, M.D., and Dr. Shaughnessy in Mayo’s Brachial Plexus Clinic. “We were ecstatic to find doctors who knew more about the injury,”Lori says.

Sooo high – Harper can now raise both arms over her head. Her brother Laiken is in the foreground.

Because most children recover on their own, few doctors specialize in treating brachial plexus injuries, Dr. Shaughnessy says. Only in the past 10 to 15 years have surgeries been developed to help the 20 percent of kids who do not recover. “When I was in school, we were told we couldn’t do anything for those kids,” Dr. Shaughnessy says.

Mayo’s Brachial Plexus Clinic strives to advance the treatment of brachial plexus injuries. Orthopedic surgeons and neurosurgeons work together to repair ruptured nerves in microsurgery, and move muscles and tendons.

At her first appointment, Harper could not raise her hand above shoulder height or touch her head. She could not turn her palm up and down unless someone else moved it. Her left shoulder was also stuck in an inward rotation. Because there were no nerves telling her muscles to move, she could not open her shoulder to the side in an external rotation. Instead, it turned further and further inward.

In September, 2006, Mayo surgeons lengthened the muscle around the shoulder and changed its position to allow for an external rotation. Then, they transferred tendons along the humerus by stitching working muscles into a different location so that the muscles could create new movements. They took the muscles that helped Harper reach behind into her back pocket and moved them so they also helped her raise her hand above her head. Luckily, Harper did not require more extensive nerve repair.

After a five-hour surgery and a two-day hospital stay, Harper went home and spent the next six weeks in an extensive cast. “Her arm was bent at the elbow like she was about to make a right turn,” Lori says. “After they took the cast off, she just reached up and touched her head, and I was a bawling mess. I’d never seen her do that before.”

Now 3 years old, Harper is pirouetting away. At her big sister’s recital in April, Harper put on a performance of her own. “She just went down and she danced by herself,” Lori says. “We couldn’t stop her.”

Dec 28, 2012 · Deep Brain Stimulation Gets Police Detective Back on the Job

Jeff Hughes and family

Jeffrey Hughes with his family.

The pain was unbearable, and the questions even worse.

Every month of 2005, Detective Jeffery Hughes of the Madison, WI, Police Department experienced 55 to 60 headaches, each lasting several hours. The headaches brought him to his knees in pain, but it was the recurring question from his daughter that hurt even more: “Mommy, why is Daddy crying on the bathroom floor again?”

The answer: cluster headache, a rare condition considered to be the most intensely painful primary headache syndrome. It sometimes occurs in more than one family member. So when Hughes, now 38, began developing episodic cluster headaches in 1992, he recognized them as the same ailment his grandfather had. For 13 years, Hughes suffered 5 to 7 debilitating headaches a month, an unpleasant pattern but one he learned to tolerate.

In 2005, no one knows why, his headaches suddenly mushroomed to 55 to 60 a month. With two headaches a day lasting for 6 to 7 hours, it didn’t leave much time for anything else in his life. His primary care physician tried maximum doses of every medication and therapy–with no lasting results.

At the brink

“The care I was getting in Madison was excellent, but I was growing desperate,” Hughes said. “Nothing helped. I’d burned up all my sick time–even the sick time my colleagues on the force donated to me. As a man who carries a gun for a living, it occurred to me at the darkest hours that there might be a way out of the constant pain. I was so tired of pain, of not being a helpful husband to my wife or father to my four children. I was at the brink.”

Hughes’ Madison doctor knew colleagues at the Mayo Clinic in Rochester, Minn., were exploring some advanced treatment methods and referred Hughes there. He had a thorough medical exam and consultation in January 2006. After careful conversations with his family and physicians, Hughes decided to undergo a new form of brain surgery first brought to the U.S. from Europe by Mayo Clinic surgeons in 1997. It is called deep brain stimulation (DBS).

DBS involves the implantation of an electrode into the brain. The electrode is connected by wires threaded under the patient’s skin to a pacemaker-like device implanted under the patient’s skin below the collar bone. The pacemaker is programmed to send pulses of electricity that reorganize the brain’s electrical impulses. Though this reorganization relieves the patient’s symptoms, no one fully understands how it works.

Awake for the surgery

Hughes is one of the first patients in the U.S. to undergo DBS for cluster headache–and he is happy he had the courage to make that choice. Like all DBS patients, he was awake, though pain-free, for a portion of the surgery. That way he could answer questions from the surgical team, led by Neurosurgeon Dudley Davis, M.D, to help them correctly identify the electrode implantation site in the brain.

The site of DBS implantation varies with the disorder being corrected. In Hughes’ case, the electrode was implanted in the area known as the hypothalamus. Among other things, the hypothalamus helps control sleep-wake cycles and the body’s biological clock–systems involved in the cyclical nature of the cluster headache attacks.

Gratitude and recovery

The surgery was several hours long, but Mr. Hughes walked out of the recovery room 45 minutes after the DBS treatment to greet family and friends. “The gratitude and relief I felt was just incredible,” he says. Three weeks later, he returned to light-duty police work and by 8 weeks, he was on the job fulltime. He continues to have about 6 headaches a month, but he finds this pattern entirely manageable compared to his 2005 headache history. “There’s nothing I can’t do now,” he says. “When I think how dark that year of constant head pain was, it’s really just short of miraculous. When I tell my doctors at Mayo that they saved my life, I think they think I’m exaggerating. I’m not.”

Hughes’ Mayo Clinic neurologist, David Black, M.D. is also pleased with the outcome. “Medications certainly remain the mainstay of treatment for cluster headache,” he says. “However, in patients whose attacks do not respond to medications DBS can be a well-tolerated option that significantly reduces pain and suffering.” Hughes returns to Mayo Clinic every few months for a check up and to have his brain pacemaker adjusted, if necessary. “DBS is not a cure, but compared with our previous option of destroying the nerve involved, DBS seems to offer better results with fewer side effects,” says Dr. Black. “DBS appears to offer a chance for a return to a normal life.”

Dec 28, 2012 · Teamwork helps nurse find relief from rare tumor

Wendy CookWendy Cook was diagnosed with neurofibromatosis as a child, which has caused many small tumors to grow on various nerves throughout her life. Only one required surgery and none caused her significant pain.

But that changed when she began experiencing pain in her right buttock. Eventually, the pain became so intense that she scheduled an appointment with her hometown doctor.

When her doctor showed Cook, a nurse, her MRI results, she broke down in tears. What she had assumed was a small tumor was massive, located along her sciatic nerve and extending into her pelvis and rectum. Given the extent of the tumor, Cook’s doctor recommended she seek treatment at a larger medical facility. She chose Mayo Clinic in Rochester, Minn.

Mayo doctors used high-resolution MRI to determine that Cook had a rare dumbbell-shaped tumor that extended on both sides of the sciatic notch, where the sciatic nerve passes through the hipbone. The location is difficult to reach and operate on without causing damage to the sciatic nerve, which controls leg movement.

In an eight-hour operation, one surgeon entered from Cook’s abdomen and one from her buttocks, meeting in the middle to delicately separate the tumor from the nerve. They removed the entire tumor without damaging the nerve.

Since the surgery, Cook has remained symptom-free. In addition, repeat MRI exams show no tumor recurrence where the tumor was removed.

Cook says she’s thrilled to be free of the pain the tumor was causing, and to be able to keep helping people as a nurse and focus on the other happy aspects of her life, including her daughter.

She now counts Mayo Clinic as her home away from home, a place where she’s made friends, including the “honest and caring” doctors she trusts to continue to watch out for her health.

Dec 27, 2012 · Carter's cranium remolding

Carter with his parents Kyle and Holly and his twin sister, BreahCarter Schlink has a twin sister, Breah. As babies, they were alike in many ways — both incredibly cute, similar button noses and fair complexion. When the twins were 2 months old, Carter’s dad, Kyle, noticed something about his son that was different — his head shape.

It was flatter on the back and a little bit uneven.

Kyle mentioned his observation to the babies’ doctor, who recommended the Schlinks try to keep Carter off of the back of his head for a few months to see if it would improve his head shape. During the day, Kyle and his wife, Holly, tried carrying Carter or toting him in a baby sling. During the night and naptime, they used a sleep positioner to ensure he slept on his side. These measures had no noticeable effect on Carter’s head shape, so the couple consulted a specialist at Mayo Clinic.

Sherilyn Driscoll, M.D., a specialist in pediatric physical medicine and rehabilitation, diagnosed Carter with brachycephaly and mild head shape asymmetry (positional plagiocephaly). She referred the family to the Mayo Clinic Occupational Therapy Department for treatment with an orthotic device (helmet) to try to correct Carter’s head shape.

Carter’s head was measured from various angles with the new three-dimensional laser scanner. The measurements were sent to the orthotics manufacturer to create a device to fit Carter’s head precisely — fitting snugly around most of his head and roomy where his head needed to fill out.

The Schlinks returned to Mayo Clinic two weeks later to receive Carter’s orthotic device. After the initial fitting, they returned one week later, then every two weeks throughout treatment for adjustments. Carter’s head was scanned monthly to assess his growth and progress. The scan also provided information for proper adjustment of the remolding device.

“It took Carter about a week to get used to the device,” says Holly. “He liked to play with the Velcro strap on the side. I was concerned that he wouldn’t sleep well wearing the device, but he slept better than his sister did. He’s very happy and tolerates just about anything.”

Carter successfully completed treatment in three months.

“We never questioned whether or not we would take this treatment route for Carter,” says Holly. “We didn’t want him to look different. We only wish we had known earlier about corrective and preventive measures parents can take. We might have been able to prevent the condition. We’re very glad we sought this treatment for Carter. The staff at Mayo Clinic is great with babies, and the laser scanner made the ongoing measurements stress-free — for the baby and the parents!”

Dec 26, 2012 · "I wanted to do something for myself"

Heidi before and after surgery

Heidi had been thinking about cosmetic surgery for years. She decided to do it after her father was killed. “It was hard on me, and my family, and I wanted to reward myself for getting through it. I wanted to do something for myself.” says Heidi.

Her reward was a septorhinoplasty (surgery to remove obstructions and improve the appearance of the nose), a chin implant and breast enlargement.

The 27-year-old had considered having plastic surgery on her nose for years. “I broke my nose as a child and I was always self-conscious about it,” Heidi says. In addition to affecting the appearance of her nose, the injury narrowed her nasal passage on one side. Even after sinus surgery the problem continued to worsen. She wanted to breathe easier again and look better, too.

Heidi also felt that her breasts were small for her body size, and opted to have breast enlargement. Even though she “wasn’t going to go extreme — only from a ‘B’ to a ‘C’ cup,” she wondered how her conservative family would react to her plan. “I thought my mother would shoot down the idea, but she said: ‘go for it’.”

Before surgery

Before surgery

 

 

 

 

After surgery

After surgery

 

 

 

 

She didn’t decide on the chin implant until the day before the surgery. She thought: “Why not? If I’m under, this is the time and it will improve my overall appearance.” She is tall — 5 feet 11 inches — and thought that a more pronounced chin would complement her bone structure.

Once she decided to have plastic surgery, Heidi consulted with three different surgeons. “I’m a scientist, the type of person who researches things carefully,” says Heidi, who has a degree in engineering and currently works as a teacher. “I chose Mayo because of its reputation for medical aptitude. Obviously, I wanted to look better, but the medical aspect was my highest priority.”

Heidi had all three procedures done at once — which is common for plastic surgery, and beneficial, because the patient only goes under anesthesia once. Oren Friedman, M.D., a facial plastic and reconstructive surgeon in Otorhinolaryngology (ENT), performed the nose and chin surgeries. Plastic surgeon Nho Tran, M.D., performed the breast surgery.

She is pleased with the quality of care provided at Mayo — as well as the medical and aesthetic results of her surgeries. Says Heidi: “One month after the surgeries, my boyfriend said that, even though he’d never even noticed the bump on my nose, he couldn’t believe that I waited so long to have it done!” She went to Florida three months after the surgery and was pleased with her appearance in a swimsuit.

When Heidi has shared her experience, she has been surprised how many others tell her about their own cosmetic procedures.

Heidi says that she wouldn’t hesitate to recommend cosmetic surgery for a daughter, cousin or best friend. “My first piece of advice, though, would be to expect some pain right after the surgery. That helped me to be realistic. Also, I would advise people not to have precise expectations; for example don’t take in a photo and say, ‘make me look like this person’.”

In a nutshell, she says: “If you’re considering cosmetic surgery, do it!”

Dec 25, 2012 · Of Heroes and Gold Medals

John Greller with his wife and sonWhen John Greller won three gold medals for swimming during the National Kidney Foundation’s U.S. Transplant Games, he gave them to his heroes.

The first went to his wife, Jane, who has remained by his side, as John says, “in sickness and in health.” The second medal went to his son, Brian, who donated a kidney to his father. And, in a surprising finish, the third gold medal went to his transplant team at Mayo Clinic.

“I thank God every day that I came to Mayo,” says John.

John received his first transplant, a kidney and pancreas in 2001, after his kidneys failed from complications related to diabetes. In 2004, John participated in the U.S. Transplant Games and won a silver medal. He promptly gave it to his donor’s parents, who were present and cheering him from the stands.

Later that year, John’s body began to reject the donor kidney, and he became gravely ill. Because he was being seen at several medical institutions in the Midwest, concerned friends urged John to consolidate his care. He looked to Mayo Clinic for help.

“Mayo has an outstanding reputation,” he says. “And I like its team approach.”

John’s doctors determined that he needed a second transplant, and Brian volunteered to become his father’s donor. After a successful surgery, the Grellers rented an apartment in Rochester so the transplant team could monitor John. Six weeks later, the family returned home to Iowa.

The next summer, John competed in the transplant games again, where he won, and gave away, those three gold medals.

“Participating in the games is a way to say ‘thank you’ to your donor and their families,” says John. “In some cases, a lost life has meant a saved life for a transplant recipient, and the games reflect that. I am grateful for every day.”

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