Sharing Mayo Clinic

Stories from patients, family, friends and Mayo Clinic staff

Margaret_Marie

Margaret Shepard, Communications Associate @Margaret_Marie

Activity by Margaret Shepard, Communications Associate @Margaret_Marie

Margaret_Marie

Dec 30, 2012 by @Margaret_Marie · View  

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. [...]

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Margaret_Marie

Dec 29, 2012 by @Margaret_Marie · View  

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. [...]

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bobt

bobt responded Mar 25, 2016 · View

Hi, so happy your in remission. Need to ask a question. My husband is to have 40 visits in the hyperbaric Oxygen chamber. He is 77 and doing well after his tongue cancer 8 yrs ago. With no saliva gland his teeth are breaking off and the risk of infection for dental work is serious. 4 times in the chamber his blood pressure after he came out was 198/100 . He does not have high [...]

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Margaret_Marie

Dec 29, 2012 by @Margaret_Marie · View  

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. [...]

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bernardflds

bernardflds responded Feb 29, 2016 · View

Any suggestions on what to do. I recently had a new born with similar if not the same condition.

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Margaret_Marie

Dec 28, 2012 by @Margaret_Marie · View  

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. [...]

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Margaret_Marie

Dec 28, 2012 by @Margaret_Marie · View  

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. [...]

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Margaret_Marie

Dec 27, 2012 by @Margaret_Marie · View  

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. [...]

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Margaret_Marie

Dec 26, 2012 by @Margaret_Marie · View  

"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. [...]

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Margaret_Marie

Dec 25, 2012 by @Margaret_Marie · View  

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. [...]

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Margaret_Marie

Dec 25, 2012 by @Margaret_Marie · View  

Surgery puts an end to life-limiting epilepsy seizures

Melissa Bruesehoff with her familyMelissa Bruesehoff is a wife, mother, teacher and church council member — titles that for many years she couldn't imagine claiming. Bruesehoff was diagnosed with epilepsy when she was 4 years old, and complications from the condition prevented her from experiencing many things that most people take for granted.

"During my school and college years, extracurricular activities weren't an option," says Bruesehoff. "I struggled with learning, and at times I worked with a tutor. I spent many more hours doing homework than a usual student." [...]

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Margaret_Marie

Dec 24, 2012 by @Margaret_Marie · View  

Guts to Glory

Sam and Laura Kirstein standing next to bikes

Sam and Laura raised awareness and funding for IBD research with their "Tour de Guts" in 2006.

Sam and Laura Kirstein first met in college where they both were runners on the school's athletic teams. They had one other thing in common: both had been diagnosed with inflammatory bowel disease (IBD). Sam had ulcerative colitis; Laura had Crohn's disease. And for both, IBD soon halted their active lifestyles.

As their symptoms worsened, Sam and Laura feared that their athletic careers were over. "There were a number of years where I really didn't do anything," says Laura. "It's difficult enough to manage a regular life with IBD, let alone trying to throw in athletics." Laura eventually found the right mix of medications to keep her symptoms in check. Medications didn't work for Sam, and after running out of options, he was referred to Mayo Clinic. [...]

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Margaret_Marie

Dec 24, 2012 by @Margaret_Marie · View  

Relief for pain caused by Chiari type I malformation

Sean Murphy on the ski slopes

After surgery for a Chiari malformation, Sean Murphy is back to skiing and his other normal pastimes.

When Sean Murphy's chronic headaches set in, they first bothered him after physical exertion, then after a stressful day at work.

Within months, the headaches were constant, always localized in the back of his head. The pain became debilitating.

Murphy consulted his family doctor and was referred to a neurologist. His hometown physicians were stumped.

Murphy was referred to Mayo Clinic, where he was diagnosed with Chiari malformation type I, a rare condition in which the brain tissue at the back of the head protrudes into the spinal canal. The disorder causes a variety of neurological symptoms, but is treatable.

Mayo Clinic physicians initially sought to relieve Murphy's symptoms with medication, but as his health continued to worsen they decided surgery was his best option. [...]

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angelbrown2472

angelbrown2472 responded Apr 12, 2016 · View

What was the mm measurement of your protrusion?

abbydabby

debchiari responded Oct 28, 2016 · View

I had a 17 mm...3 surgeries...still problems...no quality of life

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Margaret_Marie

Dec 23, 2012 by @Margaret_Marie · View  

Grateful for his life and glad to help others

Bruce SchwartauWhen Bruce Schwartau was diagnosed with primary sclerosing cholangitis, a chronic liver disease, he understood he'd eventually need a liver transplant. Until then, he didn't want his condition to change his life.

For years, it didn't. Bruce continued his university course work, traveling to communities throughout southern Minnesota to teach. But as his disease progressed, his activities were curbed. "Sometimes my chest ached from fluid retention," says Bruce, "and I had leg cramps that lasted for hours."

Finally, Bruce was hospitalized at Mayo Clinic. It was then he began to appreciate the "significant resource" that Mayo Clinic was to people like him who are critically ill. His only hope was a transplant.

"I knew there was a good chance I wouldn't receive a liver," he says. "Every time I said goodbye to someone, I realized it could be the last time." [...]

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Margaret_Marie

Dec 23, 2012 by @Margaret_Marie · View  

Repaying a gift: Scholarship recipient says thanks in a special way

Joe and Janice Lueken

Joe Lueken, who has suffered the tremors of Parkinson's disease for more than 12 years, holds out steady hands after deep brain stimulation surgery June 15. His wife, Janice, said the change was immediate and profound.

About 14 years ago, Joe Lueken was working at his grocery store and noticed occasional tremors.

"I didn't think anything of it, but it got to me more and more," Joe said.

After a trip to a local physician, followed by examination at the Mayo Clinic, he received a diagnosis of Parkinson's disease.

About a year before Joe's diagnosis, he helped the Bemidji State University Foundation launch the BSU Full Tuition Scholarship. Sue Kringen, BSU Foundation senior director of development, said she asked Joe for an initial donation, and he was glad to comply.

On June 15, Joe's scholarship contribution and his Parkinson's disease met full circle. He underwent deep brain stimulation surgery at St. Mary's Hospital at the Mayo Clinic. The procedure involves a neurosurgeon placing thin metal electrodes about the diameter of a piece of spaghetti into brain targets and attaching the electrodes to a computerized pulse generator. Signals from the pulse generator help control the shaking of Parkinson's disease. [...]

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Margaret_Marie

Dec 22, 2012 by @Margaret_Marie · View  

Family Pressure Brings Timely Treatment

Tom Sherrard and his dog.Tom Sherrard often told his wife, Kris, that they really needed to spend more time in Minnesota. Tom has vacationed in Northern Minnesota ever since he was a youngster. Today he, Kris, and daughters Megan and Sarah continue to vacation at the family summer home, where they enjoy boating, fishing, and all the lake has to offer. During 2006, they did spend more time in Minnesota, but it was farther south, at Mayo Clinic.

Tom first noticed a pea-sized lump on his neck in August of 2005. When he first felt it, he thought perhaps it was a swollen gland that would go away. Because his daughter Megan was to be married in a couple weeks, he didn't want to sidetrack the family from the wedding plans. So he put off seeing a doctor.

He finally made an appointment with his primary care physician in September, but ended up canceling because work got busy. He remained aware of the lump, which wasn't going away, and family members were asking about it. Finally his daughter Megan became very persistent, insisting that he needed to do something about it. [...]

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Margaret_Marie

Dec 22, 2012 by @Margaret_Marie · View  

Forever a teacher

Cynthia AmendtWhether instructing art classes or modeling for students, Cynthia Amendt has always been a teacher. When she was diagnosed with a glioblastoma — a deadly brain tumor — Cynthia thought her teaching days might be over. Then she joined a clinical trial at Mayo Clinic and now realizes she's received her most important teaching assignment ever — helping medical researchers learn about a drug that has recently demonstrated potential for extending the life of patients with glioblastoma multiforme.

Nearly four years ago, Cynthia was diagnosed with a glioblastoma, the highest grade glioma (grade 4) tumor and the most common and aggressive type of primary brain tumor. Glioblastomas account for 52 percent of all primary brain tumor cases and 20 percent of all intracranial tumors. Despite being the most prevalent form of primary brain tumor, however, in Europe and North America glioblastomas occur at a rate of just 2 to 3 cases per 100,000 people. Although these tumors can occur at almost any age, they're most common after 50 years of age. [...]

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Margaret_Marie

Dec 21, 2012 by @Margaret_Marie · View  

Ella Schultz: Thriving with Family and Medical Support

Ella Schultz holding catEven before 6-year-old Ella Schultz was born, she was already a miracle and had beaten many odds. Because Ella's mother, Patty, was 42 years-old when she was considering becoming a parent, and her father, Ernie, had survived cancer, neither were sure they would be able to conceive a child. Fortunately, they were able to become pregnant quickly. Patty's pregnancy was trouble-free, and when Ella was born, on Christmas Day in 2001, she appeared perfectly healthy.

"At two months of age, however, Ella began to develop tan 'cafe-au-lait' spots on her skin, which are pigmented birthmarks," says Patty. "Because these spots can sometimes signal bigger health issues, our local doctor referred us to Mayo Clinic for testing." [...]

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crayolaqt

Nf1Shauna responded Aug 18, 2014 · View

I don't know if it is possible, but I would love to get in touch with the Schultz family. I was Ella's teacher when she was in Preschool at Richfield United Methodist Church. I also have NF1. It has been years since I have seen Elle or her parents due to their movie. So if it is possible to get in touch with them, I would love to!

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Margaret_Marie

Dec 21, 2012 by @Margaret_Marie · View  

For Better, For Worse

Andy WalchWhen Janey Walch said "for better or for worse, in sickness and in health" as part of her marriage vows to her husband Andy more than six years ago, she definitely knew the implications of those words. In fact, their wedding was prompted by the discovery of a brain tumor in Andy, whose surgery was scheduled immediately following their chapel ceremony.

Originally, from Spooner, Wis., Andy was on a conference call six years ago, when he suddenly lost his ability to speak. As an attorney, he closely followed the details of a poignant Supreme Court case. "When it was my turn to present, I couldn't verbalize the information I had prepared," recalls Andy, who had been practicing law for 30 years and was planning to retire. "When I could talk again, I went upstairs and told Janey that something was wrong." [...]

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Margaret_Marie

Dec 20, 2012 by @Margaret_Marie · View  

Surgery helps Jody get control of her life

Jody WobbeWhen Jody Wobbe played basketball in high school, she occasionally fell down. "My legs would just give out," she recalls. "I could always pop right back up, so it was no big deal." But in the back of her mind, Jody knew something was wrong.

The problem began during Jody's junior year in high school in Wabasha, Minn. While troublesome, it didn't keep her from aggressively playing the sport she loved. But her muscle weakness got worse and then she had trouble eating because her jaws ached. Finally, when her eyelids began to droop and she was too weak to get up from a chair without help, her mother decided it was time to investigate this mysterious weakness. [...]

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Margaret_Marie

Dec 19, 2012 by @Margaret_Marie · View  

"From worst to first" after kidney cancer surgery

Jasper Johnikin

Jasper Johnikin has maintained his busy schedule of youth sports coaching after surgery to treat kidney cancer.

"At 45, I was too young to plan my own funeral," says Jasper Johnikin, an apartment complex maintenance supervisor from Milwaukee, Wis. But that's exactly what Jasper was contemplating one holiday weekend several years ago.

"I'll never forget it," he says. "My doctor called me on Memorial Day and told me I had renal cancer and there was no possible treatment."

This is devastating news for anyone; especially Jasper... who had (and still has) only one kidney. Both of his parents are deceased and he has been unable to obtain records from the children's hospital that removed his other kidney when he was just five. "I was too young to remember the events leading up to that surgery – or much about the hospital stay," says Jasper. [...]

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Margaret_Marie

Dec 18, 2012 by @Margaret_Marie · View  

"Green Light" Laser Surgery Treats BPH

Paul HamernikPaul Hamernik says that "green light" laser surgery has meant he can enjoy his life again.

As a stock car racer, Paul Hamernik thought his frequent restroom breaks were an occupational hazard. He simply accepted that his bladder was small and his nerves ran wild — until he learned his PSA level was increasing.

"PSA, or prostate specific antigen, is a normal substance produced by the prostate, usually found in an increased amount in the blood of men who have prostate cancer, infection or inflammation of the prostate, and benign prostatic hyperplasia," explains Lance Mynderse, M.D., a Urologist at Mayo Clinic in Rochester.

"My local doctor suggested I go to Mayo and be evaluated," says Paul. "He said Mayo had advanced tests and procedures to diagnose and treat prostate conditions that weren't widely available." [...]

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robles2

robles2 responded Oct 26, 2015 · View

I am 73 years old have been to two Urologists for BPH and both have recommended a surgical procedure as I am now starting to retain a larger than normal amount of urine in my bladder along with frequent urinating. One doctor recommends Green Light Laser Surgery the other, a Button Turp procedure. Can you advise as to the pros and cons of each.

iggy

iggy responded Sun, Mar 26 at 8:56pm CDT · View

I don't know weather to use green lite lazer or urology can you help me

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