A few years ago, Jessica Veach’s life was going according to plan. She’d started her career as an elementary school teacher — a dream she'd had since she was 8 years old — and was settling into married life with her husband, Colin. Jessica was also successfully managing epilepsy, which she had been diagnosed with during her freshman year at Vanderbilt University.
But in 2010, something changed.
“After 10 years of having my seizures under control with medication, they came back with a vengeance,” says Jessica, who lives in Seattle. What had been occasional simple partial seizures were now frequent complex partial seizures. Soon, Jessica was forced to take a medical leave from teaching. She had to give up driving and many of the activities she loved. And the unpredictability of her seizures, as well as the exhaustion that set in after a seizure, limited the time she was able to spend with friends.
"Giving up my independence was very difficult," she says. "I was limited to places within walking distance, or I had to rely on friends for rides."
Even with the precautions she took, Jessica faced risks. One day while Colin was at work, she fell down a flight of stairs during a seizure. “I started to be scared to do anything on my own, because I never knew when a seizure might happen,” she says. “I decided it was time to explore all of my treatment options.”
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I have been going to Mayo Clinic since 1985. When I was 6 years old, a doctor gave me an injection into left buttocks of Terramycin,
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Written by Barry M. Bloom
When I arrived at Mayo Clinic in Scottsdale, Ariz., that September day almost five years ago, my care for colon cancer was fractured and really a mess. I had suffered through a second bout of the disease, when the cancer jumped from the colon to the lung. After surgery to bisect the upper lobe of the left lung, I had just embarked on a six-month program of chemotherapy.
A local hospital had bungled the pathology from the original colon surgery in February 2008, discovered only when I went to a facility in Texas for a second opinion. As it turned out, at the time of the original colon resection, a trace of cancer was evident in a lymph node, doctors there discovered. Had my oncologist at the time possessed that information, he would have immediately placed me on a course of chemo. He didn't, and suddenly I had become a Stage IV cancer patient for the worst of reasons: medical error.
Just as bad, the surgeon who performed the original colon surgery did such a poor job sewing up my abdomen that it created an incision hernia. When she fixed the hernia, she told me she had inserted some mesh to pull the area together. That turned out to be false. The hernia surgery had to performed again. This time she demurred and sent me to another surgeon, who did the job properly.
No apology from the doctor or the local hospital has ever been forthcoming.
In the late summer of 2009, the second opinion confirming the spot on my lung, the biopsy, the surgery itself, and my first chemo sessions were reminded me of the times I was given flu shots in the pharmacy of a Safeway. My anxiety was at an untenable level, and as now the CEO of my own health care, I had learned an important lesson: the more doctors, clinics and hospitals involved without access to the same computer records, the greater chance for something to go wrong.
That's when Mayo Clinic became involved.
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For many years, those lucky enough to share a work space with Ruth Tibesar, a lab technician at Mayo Clinic in Rochester, had come to expect to hear at least one thing when they came to work every day: Laughter. Because that's just the kind of person Ruth Tibesar is -- she enjoys making those around her smile. But a little more than two years ago, that laughter disappeared soon after Ruth's mother passed away. Soon after that, Ruth suffered a mild stroke while at work, and it was while she was in the hospital recovering that she says she began to feel herself change into a person she and those around her no longer knew.
"I was angry," Ruth says. "I wasn't talking to anyone. Something had changed. But then I just went on like nothing was wrong."
Once she left the hospital, however, Ruth began to realize something was, in fact, very wrong. "I started to withdraw from things and stopped talking altogether, which is odd for me," she says. "I began to isolate myself. That was a real trigger that something wasn't right." As were the sleepless nights. "Insomnia was another huge trigger for me," she says. "It gave me too much time to think."
Still, she didn't feel like she needed help. Instead, Ruth says she went on living this way until she reached a point where she eventually just "went numb" inside. "I got to a point where I felt nothing," she says. "I had no emotions. I just stopped caring. I felt like a piece of mud -- like nothing. There was no spunk. No drive for the next day."
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Frances Shaw’s health and career mixed together in a muffin batter. With her perseverance and answers from Mayo Clinic, both her health and career as a baker and entrepreneur, are turning out golden.
Frances Shaw didn’t set out to be a baker. Her career essentially found her as she tried to find ways to manage her health and dietary restrictions, while still enjoying food.
In her senior year of college, while studying film, Shaw, now 25, suddenly found herself dealing with ongoing stomach and pain symptoms that had worsened dramatically. “I was really, really tired,” she says. And that wasn’t all. “I had bone pain and was instantly bedridden.”
Finding out what was wrong was not as instant, however. In fact, it was an odyssey that dragged out for seven years. “I saw every kind of doctor,” she says. Eventually, Shaw learned she had Celiac disease and an intolerance of dairy products.
After her diagnosis, Shaw eliminated gluten and dairy from her diet. “I did notice a big difference in how I felt,” she says. “But I was so hungry. It was hard to find the combination of gluten-free, dairy-free that tasted good.”
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For her first 38 years, Jayne Bushman was a picture of health. But then one morning she woke up with an earache, something she says she'd never before experienced. Her first stop was to see her Family Medicine doctor at Mayo Clinic in Rochester who, unable to pinpoint the exact cause of her pain, sent her to Mayo's Department of Otorhinolaryngology. It was there that after a series of additional tests and examinations, Bushman learned she had much more than and ear infection. The diagnosis was Wegener's granulomatosis, a rare disorder that inflames the blood vessels and restricts blood flow to various internal organs.
The ear issues were simply one manifestation of the disease, which often affects the kidneys, lungs and upper respiratory tract. The restricted blood flow caused by the disease can damage these organs.
As Bushman listened to doctors explain her diagnosis, she says she felt "shocked." That only got worse after she went home and began using the Internet to research her disease. "The very first thing I did after my diagnosis is what a lot of people do, which is the very wrong thing," she says. "And I now tell any person I meet or talk to online who gets diagnosed with Wegener's disease to stay off the Internet. It'll do nothing but scare you. That's exactly what it did to me."
Still, Bushman says she only allowed herself to feel that way for a moment or two. "Initially, it was a huge shock," she says. "But I had three kids at home, I have a career … and I sure as heck wasn't going to let this get in the way of that. I've always tried to not live in my disease and to instead live with my disease.”
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If Proud Mary is playing, Sandy Dyson wants to be dancing. But last spring, it looked like Dyson’s dancing days might be behind her. After knee replacement surgery, the 71-year-old Kennebec, S.D., resident was in so much pain that just walking seemed like punishment.
Thanks to a “wickedly good team” of rehabilitation specialists in the Mayo Transitional Care program at Mayo Clinic Health System in Waseca, however, she was back on the dance floor by winter.
The Transitional Care program provides a step between hospital and home for patients, who are supervised by physicians and receive daily care from nurses and therapists. A multidisciplinary team of providers sets up an individualized plan of care for each patient designed to get them back home as quickly as possible.
“Without their help I wouldn’t be where I am today,” says Dyson.
When she arrived in Waseca three days after having surgery at Mayo Clinic, Dyson was in “excruciating” pain.
She understood that the pain she was experiencing wasn’t unusual immediately after knee replacement surgery, but Dyson was not happy about it. And not shy about letting people know it. But that didn’t scare staff away. Dyson says someone checked on her every 30 minutes the first week she arrived, always meeting her tears and frustration with kindness and encouragement.
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Written by Sara Jacobsen
Everyone who visits the Mayo Clinic has a story. Though my story may be a lot like all of the other patients who have come and gone through the Mayo Clinic system, I want to share my gratitude for the organization, facility and clinic that Mayo is.
The year 2013 proved to be a bit of a roller coaster for me. I started out with bowel and bladder difficulty that ultimately spread to affect my neurological system and breathing. I had seen every specialist and had more tests done than I ever knew were possible. In August, I started worsening. I was having difficulty taking a deep breath in, while having increased right sided weakness, fatigue and numbness. The whole array of diagnoses were thrown at me (ALS, MS, Cancer, Myasthenia Gravis, and everything in between). I was placed on oxygen at night and it was becoming difficult to have enough energy to care for my two young boys (ages 3 and 5). I continued to work as a nurse, but I wasn't as effective as I had been.
In October, things continued to worsen. I had to stop running because my right foot was becoming numb, and I had to limit my activity because it was becoming more and more difficult to breathe. By the time I decided to come to the Mayo Clinic (the best place in the world for medicine) in November, it was hard for me to drive home at night because of the numbness in my right foot, it was getting difficult to make it through a day of work, and I had no energy for my kids. The quality of life I had was diminishing quickly.
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I was diagnosed with eosinophillic esophagitis (EE) by another provider, who said I needed to have my esophagus stretched every six months with a balloon. I decided to get a second opinion at the Esophagus Clinic at the Mayo Clinic. Wow, am I glad I did! At first, I was given a soft steroid, which may the EE go away! Which was great news! However, then Dr. Alexander and his team did some additional testing of my esophagus, and they were able to figure out that my EE (for which I had 10 times the normal amount of eosinophils) was actually caused from eating eggs, peanuts and dairy! Through the great care of Dr. Alexander and his team, not only did I not have to have my esophagus stretched, I did not even need to take medicine!!!!
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I had been to so many different doctors for my shoulder pain. Was even told it was all in my "head," but my husband and I continued searching for answers. We came to Mayo Clinic in Florida, they ran all kinds of tests, they believed my pain. After all those tests, I was diagnosed with thoracic outlet syndrome. In my mind I was like okay, good, but please explain to me what I have been feeling. And he did. Dr. Daniel Montero, my Orthopedic doctor took excellent care of me. He never gave up hope for me, that I would recover from this issue.
We decided to do physical therapy, so I visited there Physical Therapy team, and they treated me with excellent service. So for a time, we did several long sessions to see if it would work, and it did for a time. Then we moved on to a pain management team, and Dr. Peter Dorsher. We started injections on the neck to relieve pressure, but to no relief.
I remember that day when Dr. Montero saw me to give me results of an MRI. He entered the room with a smile -- like we have answers.
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My name is Jill Staloch, and I had my first seizure when I was a freshman in college. Epilepsy never impacted my life, besides having to take medications and having a yearly appointment with my doctor. It wasn’t until 2010 that my life changed because of seizures. I had been seizure free for at least 10 years, but during my pregnancy, I started to have multiple seizures weekly.
During this time, I was worried about my baby’s health, I could no longer drive or be left alone, I was having difficulties doing tasks at work, and I eventually had to be on bed rest. Even after delivering a healthy baby girl, I continued to have seizures. I still was unable to drive and couldn’t be alone with my daughter, and my family worried about me. Epilepsy had taken control of my life. My husband researched different ways we could get help. He said we needed to go to the Mayo. I was resistant but knew something different had to be done.
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When I was 18 years old, I noticed a small lump on my right forearm. I went to my primary care physician and was told it was nothing to worry about. Within one month, five more lumps formed on my right arm. My physician scheduled me for a biopsy and due to complications. I ended up in the emergency room the very next night. My arm had turned purple and blue and swelled to twice its size. After the biopsy, I was referred to multiple different physicians, and none of them could figure out what was wrong with my arm.
After three months I was beginning to lose hope of regaining my normal college life, when someone told me about the Mayo Clinic. The next day I called and scheduled an appointment with a dermatologist named Dr. Conroy. I honestly cannot say how glad I am to have met Dr. Conroy. His attitude and personality could make anyone feel better.
After meeting, Dr.Conroy suggested another biopsy, which made me extremely nervous due to my previous experience. He reassured me that everything was going to be okay and that he would take great care of me.
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