Sharing Mayo Clinic

Stories from patients, family, friends and Mayo Clinic staff

Sharing Mayo Clinic feed


2 days ago by @SharingMayoClinic · View  

'All We Want Is for Evie to Reach 100 Percent of Her Potential'

Evie McLeish at Mayo Clinic Proton Beam Therapy Center. The night before 8-year-old Evie McLeish’s brain surgery, her Mayo Clinic neurosurgeon David Daniels, M.D., Ph.D., told her parents, "I don’t want you to think of this as the end. This is just the beginning of a marathon."

The procedure was the start of Evie’s long-term care plan for treatment of a brain tumor. Along with the brain surgery, that plan included chemotherapy and radiation therapy. Due to her age and the location of her tumor, though, her doctors recommended Evie receive proton beam therapy instead of conventional radiation therapy.

The timing was right. Mayo Clinic had just begun a new Proton Beam Therapy Program at its Rochester, Minnesota, campus. And not only was this unique treatment readily available to Evie, it was relatively close to her family’s home in Ankeny, Iowa, just a three-hour drive away.

"We were dealt a big blow with Evie’s tumor," says her mother, Ali McLeish. "But there have been silver linings in this whole thing, including that we could get proton beam therapy without having to travel across the country."  [...]

Click here to view the rest of the post

Login here to comment.

4 days ago by @lsbinner · View  

Volleyball Player Realizes Her Dream With Help From Her Mayo Clinic Team

Volleyball player Brooke Johnson was inspired by her care team after her hip surgery.As senior captain of her high school volleyball team, Brooke Johnson was determined to lead her squad to the state tournament. Never mind that the team hadn’t made it there before. Or that her small school had never sent any athletic team to a state tournament. Or that Brooke had health issues that made playing a challenge. Not even that she required extensive hip surgery four months before the season started. None of that mattered to Brooke.

“I was convinced we could do it,” she says. “That’s what I was working toward, and I refused to give up.”

The obstacles in her path were significant. Her team at Mayo Clinic in Rochester, Minnesota, worked with Brooke, though, to see her through to her goal. And in November 2015, her Heritage Christian Academy volleyball team made its first appearance in the Minnesota state high school tournament, earning third place overall.  [...]

Click here to view the rest of the post

Login here to comment.

5 days ago by @SharingMayoClinic · View  

Unique Form of Genetic Testing Uncovers the Reason for Years of Mysterious Symptoms

SharonMills805When she was a teenager, Sharon Mills started having excruciating pain after eating. Medical tests found abnormalities with her liver but no reason for the irregularities or pain. She continued to experience the troubling symptoms for decades.

As an adult, Sharon moved to different parts of the country several times. With each move, she visited academic medical centers and underwent a wide variety of tests and procedures in hopes of uncovering a reason for her pain. No one could give her an answer, until she moved to Jacksonville, Florida.  [...]

Click here to view the rest of the post

Login here to comment.

Sat, Jul 16 at 11:05am CDT by @SharingMayoClinic · View  

Refusing to Give Up After Devastating Accident, A Farmer Finds Help and Healing at Mayo Clinic

Gene Franke is back on his feet after farm accident. When Gene Franke left his farm in rural Hayfield, Minnesota, driving a semi-trailer truck loaded with hay and bound for Oklahoma, he never imagined the return leg of his journey would be as a passenger in an air ambulance jet. But in September 2011, that’s exactly what happened.

A serious accident left Gene paralyzed and in critical condition. Doctors in Oklahoma didn’t think he would survive. Longtime patients of Mayo Clinic, Gene and his wife, Barbara, were determined to get him back to Mayo's Rochester, Minnesota, campus for care.

“The doctors at Mayo Clinic knew what was going on, and they assured us they could do something for him,” Barbara says. “We knew he had to get up here. The care at Mayo Clinic is like nowhere else. We’re used to it, and that’s what we wanted.”  [...]

Click here to view the rest of the post

Login here to comment.

Aug 15, 2014 by @iggeez1416 · View  

Mystery Solved – Diagnosis Moves Patient from Frustration to Peace of Mind and a Plan

Karen Gibson at Mayo Clinic with her husband. I want to share my story to possibly help another person and to hopefully help others who are still facing their own health unknowns.

I struggled for years with extreme fatigue, major skin problems, muscle weakness, escalating eye issues, and a host of other unexplained symptoms. I moved to Georgia with more and more symptoms. I developed relationships with new doctors and developed new symptoms – seizures and heart-related syncope. I went to see a neurologist, who began to run tests. In the meantime, I had regular quarterly blood panels by my regular physician, who upon reporting to me by phone noted no irregularities. I was told time and time again to stop chasing a diagnosis. My family continued to watch my decline.

After running numerous tests, my neurologist could only ascertain that I may have had some mini-strokes. My neurologist referred me to a major university hospital. After two visits, and being practically laughed out of the place, I began to have serious doubts about my symptoms and began to believe the many specialists and psychologists who told me it was emotional response.  [...]

Click here to view the rest of the post


livalot responded Mon, Jun 13 at 1:01pm CDT · View

I'm so sorry! It is a debilitating disease. I had my thymus gland out in February and am getting infusions every 6 months. Had my first 2 in April. Plus was on 60 mg of prednisone. Down to 40 mg and back up again. I'm not sure the surgery or the infusions are working. It's hard to tell. Hoping you find something that gets you better. We need a cure!


laureen responded Sat, Jul 9 at 11:13am CDT · View

The great man who cures all known diseases, Dr Sebi is a healer, pathologist, herbalist, biochemist and naturalist, who immigrated from Honduras and who has committed his life to the service of helping people cure their diseases. In 1988, he took on the Attorney General of New York in a Supreme Court trial where he was being sued for false advertisement and practice without a license after placing ads in a number of newspapers, including [...]

Login here to comment.

Oct 19, 2015 by @HoytFinnamore · View  

Sidelined No More - Scrambler Therapy Puts Tess Wilson Back in Action

Tess Wilson is enjoying life again after scrambler therapy helped her chronic pain. Each year after their big Thanksgiving meal, Tess Wilson's family has a tradition of playing games in a gym to burn off some calories. For much of her high school and college years, Tess spent that afternoon sitting on the sidelines watching the rest of her family run around. Severe, chronic pain made it impossible for her to join in the fun.

Thanksgiving Day 2014 was different. On that day, Tess was in the thick of the action. She played capture-the-flag, hide-and-go-seek, soccer and tag.

"I was incredibly sore the next day, but not in a chronic pain way," she says. "I just used muscles that I had forgotten were there."

The change came as a result of Tess' participation in a a clinical research trial at Mayo Clinic that studied the effects of a new treatment for chronic nerve pain, called scrambler therapy. After two weeks of the therapy, Tess found relief from the constant pain that had been plaguing her for five years.  [...]

Click here to view the rest of the post


ginaw responded Fri, Mar 4 at 12:24am CDT · View

Does this help someone with HNPP...hereditary neuropathy with liability to pressure palsy?


Dlvsbrs responded Fri, Jul 8 at 7:28pm CDT · View

Does this help with small fiber neuropathy as found in erythromelalgia? Could it help Erythromelalgia patients?

Login here to comment.

Fri, Jul 8 at 5:29pm CDT by @SharingMayoClinic · View  

Desperate for Relief From Pain, Teen Considered Amputation. Today, He's Back on Both Feet

The Pediatric Pain Rehabilitation Program gave Connor Bleakley the confidence to function at a very high level.When he was 16 years old, Connor Bleakley asked his father, David, if he could have his foot amputated. David thought it was probably a good idea.

By that point, Connor had lived with severe pain in his foot and ankle for years. He had gone through numerous treatments to relieve the discomfort, with little effect. A sophomore in high school, Connor was unable to walk without crutches due to intense pain. So when, in desperation, Connor asked to have his foot taken off, David didn't see any other choices.


Click here to view the rest of the post

Login here to comment.

Fri, Jun 17 at 4:53pm CDT by @SharingMayoClinic · View  

Difficult Diagnosis Interrupts Residency, Gives Young Doctor a New View of Patient Care

Natalie Ertz-Archambault, M.D. plans to apply for fellowships in hematology and medical oncology after uncovering the cause of her illness.Successfully finishing a medical residency is a significant milestone in any physician's career. But when Natalie Ertz-Archambault, M.D., graduated in June 2016 from the Internal Medicine Residency at Mayo Clinic's Arizona campus, the achievement felt particularly sweet.

"It was an incredible success for me, since I actually started my residency in 2012, completed four months, and then became too ill to work," she says. "At that time, I wasn't sure if I'd ever reach graduation."


Click here to view the rest of the post


Samia responded Thu, Jul 7 at 6:43am CDT · View

Such a great achievement, I love the perseverance and determination. Honored to say that I've worked with a few people on this list.

Login here to comment.

Jan 15, 2013 by @MakalaJohnson · View  

Unraveling the Mystery of Semicircular Canal Dehiscence Syndrome

Imagine listening in real time to the thump, thump of your own heartbeat, the rush of your blood pulsing through your veins, and even the slightest twitch of your eyes - all in surround sound.  Those are but a few of the symptoms that Wendy Tapper was experiencing when she arrived at the Mayo Clinic in May of 2012.

The Journey to Mayo

Wendy TapperOutgoing and energetic Wendy, of Kansas City, Mo., enjoyed a career as a producer and publicist.  Bringing people and ideas together was second nature to Wendy and aided in her determination to find the answers in her own health care.

For three years prior to coming to Mayo Clinic in spring 2012, Wendy went from doctor to doctor and endured batteries of tests, scans, appointments and misdiagnoses.  Her rare condition ultimately revealed by Mayo physicians was masked in part by two distinct illnesses - breast cancer and a stroke. 

While those illnesses and the treatments Wendy was receiving are life-altering, they were compounded with the escalation of an underlying third and separate issue.  It was the escalation of her symptoms of dizziness, hearing loss and a drastically diminishing quality of life that brought Wendy to Mayo Clinic. [...]

Click here to view the rest of the post


singergirl responded Tue, Jul 5 at 7:35pm CDT · View

Hello, I'm so sorry about the U of M. I know how I felt after that horrible experience. One just feels lost. I'm a poor one to be giving advice because I'm in a quandary myself as to the direction I want to take. But I do have a couple of suggestions. . . First, (if you already haven't) join the Superior Canal Dehiscence Syndrome Support Group (SCDS) on Facebook. It is a closed group. [...]


Scrappinkathy responded Wed, Jul 6 at 9:55am CDT · View

Thanks for the encouragement. I will join the facebook group. It's always good to have info and support from those that understand. My family is great but I don't think they understand.

Login here to comment.

Aug 12, 2015 by @pscotti · View  

Cystic Fibrosis Patient Says Double Lung Transplant Transformed His Life

Jon Jantomaso stays active with his family after his lung transplant.

Nobody knows better than Jon Jantomaso how precious every breath can be. The 49-year-old realtor from Seminole, Florida, was diagnosed with cystic fibrosis at 2 months of age, and for the first 12 years of his life slept in a mist filled tent to help him breath and clear the mucus from his lungs. He has been in some form of physical therapy his entire life battling his disease.  [...]

Click here to view the rest of the post


AshleyDean responded Oct 30, 2015 · View

That is so awesome! Mayo has a special unit of great doctors! So happy you have enjoyed five years with your family! Many more to you!


Elephany1 responded Sat, Jul 2 at 9:18am CDT · View

so happy for you and the family, Jon. It's Alma

Edited: 07/02/2016 @ 9:19am

Login here to comment.

Fri, Jul 1 at 4:28pm CDT by @SharingMayoClinic · View  

Remembrance Events at Mayo Clinic Give Family Time to Reflect and Share

Carol Mannell remembers her sister, Kathy VanHulle, as a woman who always loved meeting new people and having fun. Carol Mannell remembers her younger sister, Kathy VanHulle, as a woman who loved meeting new people and having fun. Carol recalls how, despite being in the midst of receiving care for a serious illness when she was at Mayo Clinic, Kathy would take time to strike up conversations with people sitting next to her in waiting rooms. She would ask them to write messages in a journal she carried with her. Kathy and Carol would sing together in her hospital room.

Kathy even convinced members of her care team at Mayo Clinic to get up and dance.

“We had a lot of fun. Everywhere Kathy went at Mayo, we’d talk, laugh and get people to do the happy dance with her,” Carol says. “She had a big personality.”


Click here to view the rest of the post

Login here to comment.

Thu, Jun 30 at 10:22pm CDT by @SharingMayoClinic · View  

Quick Access to Stroke Experts Through Telemedicine Makes All the Difference for George Hoggard

GeorgeHoggard805b George Hoggard knows a thing or two about the importance of a rapid response. A former firefighter, the 78-year-old Titusville, Florida, resident spent the better part of his 42-year career teaching astronauts at the Kennedy Space Center how to escape to safety in the event of an emergency on the launch pad. He also was a member of the rescue team that would respond if something went wrong with a space shuttle mission.

So when his right eye suddenly began looking left while watching TV on a Sunday evening in April 2016, George knew something was amiss. When he began feeling nauseated, he told his wife, Rita, he needed to get to the hospital.  [...]

Click here to view the rest of the post

Login here to comment.

Tue, Jun 28 at 9:44am CDT by @SharingMayoClinic · View  

After a Long, Long Wait, a Transplant, Gratitude and Goodbyes

Randy Marlow with two of his transplant nurses. When Randy Marlow checked into Mayo Clinic Hospital's Saint Marys Campus, he knew his hospital stay would be lengthy. He just wasn’t expecting it to last one year, seven months and 21 days.

As someone who needed dual heart and liver transplants, Randy knew the probability of two suitable donor organs becoming available at the same time was small. Moreover, his rare blood type, coupled with a buildup of antibodies from multiple blood transfusions related to prior heart surgeries, meant he would be incompatible with all but 10 to 20 percent of organ donors, according to his physicians.

So Randy, an avid outdoorsman who enjoyed snowmobiling back home in the Colorado Rockies, riding his ATV, and camping, shifted his perspective from action to endurance.

Patience became the operative word. "You have to take it day by day and wait for that right day, for the miracle," Randy says.  [...]

Click here to view the rest of the post

Login here to comment.
amy hahn sattler

Jun 17, 2010 by @amy hahn sattler · View  

Teens + Mayo Health Education = new visual, colorful and engaging design

Mayo Clinic's teen patient education print materials have a new look. The goal of this new design is to help teens engage and take responsibility for their health care and lifestyle choices.

The new design includes:

  • Colorful pages
  • Age-specific photos and other visuals
  • Peer quotes
  • Key health messages
  • Short chunks of education content

Patient education specialists, designers and health care providers conducted research and used teen feedback to create the new look and tone.

To learn more about the Barbara Woodward Lips Patient Education Center click here

This post was submitted by Amy J. Hahn Sattler from the Section of Patient Education.

Add to FacebookAdd to DiggAdd to Del.icio.usAdd to StumbleuponAdd to RedditAdd to BlinklistAdd to TwitterAdd to TechnoratiAdd to Yahoo BuzzAdd to Newsvine


maya_jol responded Mon, Jun 27 at 4:49pm CDT · View

I work at Seattle Children’s hospital and we are hoping to update (or develop a new) AYA cancer unit page. Ideally, this page would be attractive to our patients with educational materials, etc. located on it. Have you or your team found any more relevant information? I ask because this article is dated 2010. Do you know of any existing Mayo Clinic Cancer pages designed for teens? Thank you in advance for any information you [...]

Login here to comment.

Sun, Jun 26 at 8:24pm CDT by @SharingMayoClinic · View  

Former Airman, Stroke Survivor Tells of Life Punctuated by Commas

Former senior airman, R. Brady Johnson, survived a cerebral hemorrhage and stroke.When stroke survivor R. Brady Johnson first visited Mayo Clinic nearly nine years ago, his doctors didn't quite know what to make of him. Not only was his stroke, at age 31, unusual, but his post-stroke physicality surprised the team of neurologists he'd come to see.

It had been just over a year since Brady, who lives in Belvedere, Illinois, had a major stroke during a surgery to mitigate a cerebral hemorrhage. The stroke cost him the sensation in his right side, the ability to speak, to run, and a litany of other abilities. Yet, in the time between the stroke and visiting Mayo, the former senior airman for the U.S. Air Force and marathon runner had managed to coax his body to do things that his rehabilitation team initially said would be impossible.


Click here to view the rest of the post

Login here to comment.

Sat, Jun 25 at 10:08am CDT by @SharingMayoClinic · View  

‘How’d We Get So Lucky?’ — Proton Beam Therapy Available at the Right Time for Jackson

Proton beam therapy was available at the right time for Jackson Fisher.

For two weeks, 14-year-old Jackson Fisher was plagued by headaches, double-vision, nausea and weight loss. His parents, Michelle and Patrick Fisher, weren’t sure what was wrong. But when Jackson came home one evening completely exhausted after lacrosse practice, they decided it was time to find out what was going on. The next day, they took Jackson to the emergency room.

What doctors found during that ER visit triggered a series of events the Fishers never could have anticipated and that eventually led the family to Mayo Clinic’s Proton Beam Therapy Program, where Jackson received treatment for a brain tumor.

“Every single person we’ve met at Mayo Clinic has been amazing, and we feel like we were meant to meet them,” says Michelle. “His doctors told us they were going to fight for Jackson. They’ve been forthcoming and explained things simply and honestly. I never second guessed his care. Being at Mayo Clinic has been the most positive experience of our lives.”  [...]

Click here to view the rest of the post

Login here to comment.

Thu, Mar 31 at 1:45pm CDT by @SharingMayoClinic · View  

Lung Cancer Patient Survives With Help of Novel Procedure, Celebrates Next Generation of Innovation

Raegan Cury

Raegan Cury didn’t worry at first when she developed a cough in early 2002 that wouldn’t go away. She was a healthy young woman, athletic, a former gymnast, and her initial chest X-ray showed what looked like pneumonia.

Even her husband, a pulmonologist, wasn't too worried, until she received a surprising diagnosis. “I never thought it was going to be bronchoalveolar lung cancer,” says her husband, Dave Cury, M.D.

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. The surgery was followed by four rounds of chemotherapy, but in 2003, tests found cancer nodules throughout her remaining lung. 

That was a dark period for Reagan and her family. She and her husband started their two young children, Chandler and Davis, in grief counseling.  [...]

Click here to view the rest of the post


Muhammad Faizan responded Sat, Jun 18 at 3:01pm CDT · View

Here's an easy to use Molarity Calculator for you to calculate molarity, mass and volume. It’s a free tool to calculate concentration of solution.

Login here to comment.

Sat, Jun 18 at 8:18am CDT by @SharingMayoClinic · View  

Family Tradition Inspires New Chimes for Plummer Building Carillon  

Carillonneur Jeff Daehn and Dr. David Daugherty with the carillon recording. When David R. Daugherty, M.D., was growing up in Rochester, he walked to Central Junior High School with his father, Guy Daugherty, M.D., a Mayo Clinic cardiologist.

"Since our school was on dad’s way to the clinic, he made a tradition of walking with each of us kids when we reached junior high age," says Dr. Daugherty, when went on to join Mayo Clinic himself, as a psychiatrist. "We checked our progress by the bells in the Plummer Building. Hearing the chimes helped us get to school on time."

That youthful memory led to an idea: Could the carillon have a set of chimes that are unique to Mayo Clinic?  [...]

Click here to view the rest of the post

Login here to comment.

Aug 24, 2011 by @susanashephard · View  

Living With Myelofibrosis (Part 2 of a 4 part-series)

Patricia Wagnerby Patricia Wagner

In this entry, I’ll talk about how the disease started and a look into how I was affected. Bear in mind that every case is different and you shouldn’t conclude that you’ll go through the same things I have. My case, in fact, is more dramatic than most.

I first suspected that something was wrong when I began to lose some of my mental quickness and my physical energy. I also had many other symptoms: bleeding gums, bloodshot eyes, flushed complexion, and abnormally long periods. I saw different specialists for each problem. Then a blood test ordered by my internist revealed very high red, white, and platelet counts. Referred to a hematologist/oncologist in my health plan, I was studied periodically by him but received no treatment. He thought perhaps I had Polycythemia Vera but wasn’t sure. [...]

Click here to view the rest of the post


traceyb414 responded Fri, Jun 17 at 5:08pm CDT · View

Hi Sue - I would also like to connect you with you and talk about your experiences. Please let's connect


moke responded Fri, Jun 17 at 9:30pm CDT · View

Hi 🙂 My understanding is that ET and JAK2 are not hereditary. That can be pos and neg I guess :/ Mark

Login here to comment.

Thu, Jun 9 at 12:54pm CDT by @SharingMayoClinic · View  

An Answer for Luis – Surgeons Remove Polyp-Riddled Colon, Restore Function and Hope

Luis Coriano meets with his medical team. Deciding to undergo a surgery to remove your colon is not a decision to be taken lightly, but it was one that Luis Coriano faced earlier this year. And he and his family wanted to make sure they made the right call.

Luis is affected by a rare genetic disorder called familial adenomatous polyposis that causes thousands of polyps to grow in the colon and ultimately leads to cancer. He knew that a prophylactic surgery to remove the diseased organ was the only way to prevent cancer from ravaging his body.

As daunting as the surgery was, however, more worrisome to Luis, was what came after the surgery. Namely, living with a stoma and an ostomy bag.  [...]

Click here to view the rest of the post


Karl responded Fri, Jun 17 at 10:07am CDT · View

Thank you for posting Luis' amazing story at Mayo ! One procedure in 10 years is incredible. A family member of mine has the Attenuated version of this (AFAP) which onsets later in life, normally late 40s, as opposed to early-mid 30s for classic FAP. I am just amazed at the surgeons ability to restore hope in patients through these advanced techniques. Truly thankful for that! It is important for patients diagnosed with FAP or [...]

Edited: 06/17/2016 @ 10:11am

Login here to comment.
Loading information...
Contact Us · Privacy Policy