After receiving a serious diagnosis, one patient turned to several medical institutions in search of answers. Where other institutions saw limitations, Mayo Clinic's interdisciplinary team saw a way forward. 

When Kyle Collett was diagnosed with an advanced tumor affecting approximately 65% of his tongue, life changed overnight.

 At 39 years old, he was a soon-to-be husband and a strategic finance professional.

"Like many people my age, cancer was simply not something I expected to hear," Kyle recalls. "My days were focused on building a future with my family, staying active and planning for what was ahead."

Before Kyle came to Mayo Clinic, the multiple medical opinions he had received had pointed toward a challenging future that included immediate major surgery, a near-total glossectomy (removal of most of the tongue), and a dramatically altered quality of life.

A different approach: Focus on what is possible

Where other institutions saw limitations, Mayo Clinic's interdisciplinary team saw an opportunity to help.

"This was a young patient," says Samip Patel, M.D., an otolaryngologist at Mayo Clinic and lead surgeon in Kyle's case. "He and his fiancée were really just starting their life together when he was diagnosed with a large oral tongue cancer."

"What was unique about this case was that we were able to pause as a multidisciplinary team and ask, 'Is there a way to treat this cancer effectively, but also preserve as much speech, swallowing and quality of life as possible?'"

Kyle quickly recognized that this collaborative team approach meant he was where he was supposed to be for his treatment.

"When nearly every other opinion focused on what I was going to lose, Mayo Clinic focused on what might still be possible," he says. "Rather than applying a one-size-fits-all approach, the team took the time to evaluate my unique situation and develop an individualized treatment plan."

Oral tongue cancers are aggressive, making cure the top priority. However, preserving the components of human identity, speech, swallowing and appearance matters tremendously.

Mayo Clinic overcame this challenge by bringing surgery, medical oncology, radiation oncology, radiology, pathology and therapy teams together early in Kyle's journey.

"Instead of feeling like I was navigating disconnected opinions, Mayo Clinic's teams functioned as one unified group with a shared mission," Kyle says.

Rather than immediate major surgery, Kyle's team recommended induction systemic therapy first. This treatment approach uses full-body medications like chemotherapy or immunotherapy to shrink the tumor and target hidden cancer cells before an operation.

"He had a strong response, and that allowed us to make the surgery smaller and then deliver more targeted postoperative radiation," Dr. Patel explains. "To me, that is the heart of personalized cancer care. The goal was to balance cure with long-term function."

By using neoadjuvant chemoimmunotherapy to shrink the tumor before surgery, the team spared Kyle from losing most of his tongue.

Kyle credits Dr. Patel's ability to explain complex medical information, alongside the commitment of the Radiation Oncology team.

Following surgery, a network of specialists, including speech, physical and lymphatic therapists, helped Kyle regain function and trained his fiancée to do Kyle's required home care.

Today, Kyle enjoys family dinners, travel and joyous conversations about what is next in life.

"The milestone was not just that the cancer was treated," says Dr. Patel. "It was that we were able to treat it in a way that helped protect his long-term function and quality of life. To me, that is real success, not just recovery from treatment, but recovery of life."

Providing confidence, clarity and hope

Dr. Patel notes that for complex head and neck cases, Mayo Clinic designs treatment around the whole person, not just the tumor.

Kyle praises that approach.

"The expertise is extraordinary, but what truly sets Mayo apart is the way it combines innovation, collaboration and humanity," he says. "During one of the most uncertain and frightening experiences of my life, Mayo Clinic gave me confidence, clarity and hope."

The post When others focused on loss, Mayo Clinic focused on possibility appeared first on Mayo Clinic News Network.

After an exceptionally rare diagnosis, a lifesaving bone marrow transplant and a near-fatal infection that pushed his body to the brink, Mike Sonnabend is not only alive — he's back to doing what once seemed impossible. 

Mike Sonnabend, a husband and father to three sons, enjoys being active — not just physically but also in the Rochester, Minnesota, community. The special education teacher and head coach of cross-country and track was preparing for an adventurous Scouting trip to the Florida Keys with his oldest son, Sam, and needed to complete a physical as part of the trip requirements.  

During the exam, his Mayo Clinic family medicine physician, Dr. Lori Bates, noticed that his spleen felt enlarged. Mike didn't think anything of it — he was feeling fine and had no symptoms. But after undergoing several tests and a bone marrow biopsy before leaving for his trip, he had a feeling he would come back to bad news.  

He was right. On July 3, 2014, Mike was diagnosed with a serious and complex disease consisting of leukemia — a cancer of the body's blood-forming tissues, including the bone marrow and the lymphatic system — and a bone marrow failure disorder, where blood cells don't develop normally. It's an incredibly rare condition — with very few cases worldwide — and is incurable with standard treatments.  

Mike's hematologist, Dr. Mrinal Patnaik, explained that a bone marrow transplant, a procedure that infuses healthy blood-forming stem cells into the body to replace bone marrow that's not producing enough healthy blood cells, would be the most effective treatment.  

"I knew that I couldn't fight this on my own. My Mayo Clinic care team is the experts, so I let them take care of the fighting, and I focused on what I could control — my family, my mindset and my recovery." 

As news of Mike's diagnosis spread, his family, friends, colleagues and community members quickly rallied around him and offered support.  

A rare diagnosis becomes even more complex 

Mike was referred to Dr. Mithun Shah, a Mayo Clinic transplant hematologist to ensure he was physically prepared for the transplant.  

All was going well with Mike's pretransplant testing until a pulmonary function test showed his lung function was much lower than expected. Because bone marrow transplants involve extensive treatments with a long, complex recovery, unexplained lung issues could make the procedure too dangerous. 

"We have a rare disease, and now there is a unique lung presentation. Our culture of collaboration at Mayo Clinic is where we shine. I picked up the phone and called my colleagues in hematology, pulmonology, pathology and other specialties — and we worked together, in real time, to assess risks and adapt Mike's treatment plans," says Dr. Shah.  

Dr. Shah referred Mike to Dr. Vivek Iyer, a Mayo Clinic pulmonologist, to help diagnose and treat the lung problem.  

"Transplant patients often have complex medical issues affecting multiple organ systems, so different specialties often need to collaborate expeditiously to solve critical issues that could delay or even prevent a successful transplantation," says Dr. Iyer.  

A lung biopsy confirmed that Mike had eosinophilic pneumonia, a rare and serious inflammatory lung condition. When steroids failed to resolve it, Dr. Iyer prescribed a monoclonal antibody-based therapy typically used for severe asthma that stabilized his lungs and kept his transplant on track — until another barrier emerged: Mike's enlarged spleen began draining his energy and appetite. In December 2019, doctors removed the massive organ, allowing his care team to move forward with his carefully planned transplant approach that would treat his leukemia while protecting his lungs.  

It worked. Mike had a successful transplant in 2020.  

Driven by a mindset focused on progress, Mike was back to coaching, teaching and running within a time frame that was "absolutely incredible," according to Dr. Shah.  

"My approach was to take the next step, trust the process and keep moving forward," says Mike.  

That same resilience would become even more evident five years later, when his journey took another dramatic turn.  

From stability to a sudden, life-threatening turn 

It was April 14, 2025. Around mid-morning, Mike began to feel fatigued, feverish and disoriented. He left work early and went to lie down, setting an alarm so he could make it to track practice that afternoon.  

But Mike wasn't well enough to make it to practice. Sam, who coaches with his dad, remembers having a sinking feeling, especially because he hadn't heard from him.  

"My dad would never not show up without letting me or the other coaches know, let alone even miss a day," says Sam.  

Sam went home after practice to check on his dad. Mike had slept through his alarm, had a high fever and was disoriented. Sam and his mom took him to Mayo Clinic's Emergency Department.  

"I don’t remember much," says Mike. "I remember going to the emergency room, and then it went black." 

Doctors soon determined he was battling bacterial meningitis, an infection that triggered overwhelming sepsis. For transplant patients like Mike, whose immune systems are compromised and who no longer have a spleen, even common bacteria can become life-threatening. 

Within hours, multiple organs began failing. His kidneys shut down, his blood pressure crashed and his body's clotting system began breaking down. He was transferred to the intensive care unit (ICU), where his condition became so dire that his family was called in to prepare for the worst. 

Mike's care again became a full-scale, multidisciplinary effort. Specialists across Mayo Clinic mobilized simultaneously — including experts in critical care, infectious diseases, nephrology, transplant medicine, vascular medicine, rehabilitation and more, meeting in real time to exchange ideas and make quick decisions together. 

"Mayo Clinic’s team-based approach is critical in situations like this. We needed everyone's expertise to give Mike the best chance of survival," says Dr. Shah.  

For Mike and his family, that collaboration was visible every day. 

"There was so much brainpower in that room, you could almost feel it," Mike says. "You could see the wheels turning. Everybody was trying to think of every possible thing to save me." 

Sam, who had since become a nurse after being inspired by his father's earlier cancer journey, helped guide the family through the most difficult moments.  

"Mayo Clinic did a great job of individualizing our care and really being there for us as a family," says Sam. "They gave us all the time we needed to ask questions — I felt like there wasn't a time clock on any of our interactions." 

Mike's journey was precarious, and at several points, his survival remained uncertain. But through relentless determination — and the coordinated expertise of dozens of Mayo Clinic specialists — Mike made another extraordinary recovery.  

Survival fueled by resilience and expertise 

"That was one of the toughest cases of my life," says Dr. Shah of Mike's most recent hospitalization. "Him pulling through and walking out of the ICU was one of my most satisfying moments." 

One year later, Mike feels good. He has his strength back, is exercising and is almost back to 100%.  

"I shouldn’t be here. I threw so many rare situations at my care team, and each time, they saved my life," says Mike. "There's no way you can get expertise like this anywhere else. It's incredible." 

Sam is grateful for the time he spent with his dad throughout his healthcare journey. 

"My dad is resilient, strong and the bravest person I know," says Sam. "I could tell he was scared, but he would always say, 'I have to keep going. I have to keep listening to the doctors. I have to keep taking my medicine, and eventually I am going to get out of it.' And despite all the odds, he did it."  That mindset — paired with his multidisciplinary care team working together — helped transform what could have been an ending into an extraordinary comeback.

The post Against extraordinary odds: A life saved more than once appeared first on Mayo Clinic News Network.

After years of testing performed at multiple hospitals that could not explain his intense, and sometimes painful, symptoms, long-distance runner Mike Singh found answers through an athlete-specific approach at Mayo Clinic, helping him adapt his routine and continue running. 

A marathon moment that raised questions 

In November 2018, long-distance runner Mike Singh was competing in a marathon when he suddenly felt that something was not quite right. 

"I was on mile 22 or 23,” Mike remembers. "All of a sudden, I felt sort of out of breath, lightheaded. I thought I was having a heart attack." 

However, as a confident athlete who had completed many races, Mike kept going and finished the race without further incident. 

It would not be a one-time experience, though. The symptoms would often return during Mike's runs, usually when he pushed himself at longer distances. 

More than just exercise 

Running is, and has long been, a central part of Mike's routine. 

"It's not just exercise for me," he says. "Running is a huge part of my life and identity. The thought of losing that was a lot to process." 

Mike runs daily and trains for races throughout the year. So when something did not feel right during that 2018 marathon, it stood out significantly to him. 

Years of tests, no answers 

Early on, Mike sought care at multiple hospitals and medical centers, undergoing extensive testing. 

Despite numerous evaluations, the results always came back the same — no explanations, no real answers. Still, the symptoms continued during Mike's long runs, and so did the uncertainty. 

"I passed all those clinical tests with flying colors," Mike says. "But all that did was leave me with questions, unanswered questions." 

Up to that point (nearly four years into Mike's medical odyssey), no one had been able to re‑create the symptoms he experienced while running. 

Mike decided to visit the Mayo Clinic Sports Cardiology Clinic in Rochester, Minnesota, hoping a different approach could finally explain what others could not. 

Re-creating the run 

At Mayo Clinic, the Sports Cardiology team met Mike and focused on understanding when and how his symptoms occurred. As Mike described the clinical signs, the team immediately identified one key detail: Mike's symptoms typically began several miles into his long-distance runs. 

Instead of relying on standard tests, the team focused on re-creating the exact conditions that triggered his specific symptoms. 

"If symptoms are not reproduced on a stress test, you can't definitively say the test is negative," explains Nadia Elfessi, a physician assistant on Mike's care team in Sports Cardiology. 

"My care team said, 'Let's just do whatever is necessary to re-create those symptoms,'" Mike says. 

 To do that, Mike ran long enough to trigger the exact symptoms he experienced during long-distance races. Then, while those symptoms were still occurring, the Mayo Clinic team moved immediately into testing. 

Because Mike's symptoms had eluded diagnosis for years, the team also developed a customized testing protocol to evaluate whether abnormal vagus nerve activity was contributing to the problem. Drawing on Mayo Clinic's expertise in cardioneural ablation, specialists temporarily blocked vagal activity with medication and had Mike exercise again under carefully monitored conditions. 

For the first time, the team was able to observe changes in Mike's heart rhythm as they happened. While the testing ruled out vagus nerve overactivity as the cause of Mike's symptoms, it revealed an underlying problem with his heart's electrical conduction system, helping the team arrive at a diagnosis and management plan tailored specifically to him. 

Finding the cause 

Now, Mike had an answer.  

"They adapted the protocols to fit my situation," Mike says. 

Dr. Guru Kowlgi, a cardiac electrophysiologist at Mayo Clinic, says the team's approach focused on recreating the exact conditions that triggered Mike's symptoms — something that had not happened during years of previous testing. 

Once the symptoms were reproduced, the team identified a disruption in the electrical communication between the heart's upper and lower chambers that occurred only during intense exertion. The findings led to a diagnosis of exercise-induced chronotropic incompetence, a rare condition in which the heart cannot appropriately increase its rate during physical activity. 

"It took a level of creativity and time that went beyond a standard evaluation," Dr. Kowlgi says. 

Why it was difficult to detect 

Exertion made the difference. 

"High-level athletes, like Mike, may only experience symptoms when they're pushing themselves at nine-tenths or even ten-tenths of maximal performance," says Dr. Darrell Newman, a cardiologist and director of Mayo's Sports Cardiology Clinic. 

Choosing a path forward 

With a diagnosis in hand, Mike's medical odyssey was over. He now had options. He now had hope that he could possibly pursue his love of running throughout the rest of his life. 

One option was a pacemaker to help regulate Mike's heart rhythm, but it was unclear whether it would improve his symptoms enough to return him to his desired level of performance. Rather than pursue a pacemaker, Mike chose a personalized management plan focused on adjusting his training and monitoring his symptoms during exercise. As part of that approach, he uses wearable technology to track his heart rhythm and capture electrocardiogram (ECG or EKG) recordings that he can share with his Mayo Clinic care team. 

Still running — with a different approach 

Today, Mike still runs regularly, but his approach has changed. 

"It's a little bit of an inversion," he says. "Instead of my heart adjusting to my level of effort, I have to do the opposite and adjust my level of effort to my heart rate." 

"I can take that ECG, send it to the Mayo team and get pretty quick feedback," he says. 

Today, Mike continues to run (and compete), adjusting his effort but not giving up. 

"I'm still able to do it," Mike says. "Working with the experts at Mayo Clinic, I am able to continue living my lifestyle. I just enjoy running so much. It is a huge part of my life, and the Mayo care team was able to give that back to me."  

A new understanding 

For Mike, having answers made the difference. 

"It wasn't a simple answer, and not having any answers after so many years of searching can be defeating and also disheartening," Mike says. "But having this team of experts at Mayo just take time with me, work with me and find the information changed everything. In a manner of speaking, they saved my life, and they've allowed me to continue living that life." 

Today, Mike continues to run (a lot), adjusting his effort but not giving up the part of his life that matters so much to him. 

The post Racing to find answers: Yearslong search lands Mike Singh at Mayo Clinic  appeared first on Mayo Clinic News Network.

A simple 10-second heart test with the aid of artificial intelligence is helping physicians detect a serious, often-overlooked disease.

For Rochester businessman Mike Busch, that technology proved life-changing. After months of unexplained symptoms, an AI-enhanced ECG helped doctors at Mayo Clinic quickly uncover a diagnosis that might otherwise have been missed.

Watch: AI-ECG helps physicians detect hidden heart condition

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At the age of 77, Mike Busch says he has no plans for retirement.

"I still work full time," he says.

Spending time with Carol, his wife of 51 years, running his business and promoting youth wrestling in the region means Mike is always on the go.

But in 2023, his health became a concern.

"I wasn't feeling well for a few months, felt like somebody was sitting on my chest," Mike says. "I kind of lost my balance and kind of fell a little bit. I knew I had to probably go in and see somebody. I had been putting it off too long, and went into Mayo."

His doctor ordered an electrocardiogram, or ECG. It's a simple 10-second test that records the heart's electrical signals. Unbeknownst to Mike, he had developed a heart condition called cardiac amyloidosis.

"Cardiac amyloid is a condition where abnormal proteins deposit in the heart. It makes the heart stiff and causes problems with heart failure," says Dr. Martha Grogan, a cardiologist and director of the Cardiac Amyloidosis Clinic at Mayo Clinic in Rochester, Minnesota.

"I kind of suspected something, but I didn't think it was that serious," Mike says.

His doctors were able to quickly diagnose him, thanks in large part to AI.

"Artificial intelligence, isn't it? I think," Mike says. "I'm not sure."

"The algorithm that we have to detect amyloid was strongly positive. Our scale goes from zero to 100, and he ranked a 98," says Dr. Grogan.

"It begins to learn what the patterns are, and then when it's all done, we can give it an unknown ECG and say, 'Is the pattern that suggests amyloid heart disease present, yes or no?' And it's a very powerful classifier. It can see signals that are hidden to humans," says Dr. Paul Friedman, a cardiologist and Norman Blane and Billie Jean Harty Chair, Mayo Clinic Department of Cardiovascular Medicine Honoring Robert L. Frye, M.D., at Mayo Clinic in Rochester, Minnesota.

That's vital for patients with cardiac amyloidosis, which is often misdiagnosed as other types of heart problems, delaying important treatment.

"I couldn't believe it, put it that way," Mike says.

This AI-ECG tool was developed at Mayo seven years ago and recently received FDA clearance.

"Since the introduction of the AI-ECG at Mayo Clinic, it's now been used over a million times by clinicians in screening for various heart conditions," says Dr. Friedman. "It's a powerful test, and it can have us point not our stethoscope but maybe our looking glass in the right direction, so we don't miss things that are important and that are treatable."

Mike takes his medication, continues to follow up with his doctors, and still stays busy.  

"I don't see any changes as far as my work ethic goes," he says. "I'm fortunate to be where I'm at, and I'm happy with Mayo Clinic and what they've done."

The post AI-ECG helps physicians detect hidden heart condition (VIDEO) appeared first on Mayo Clinic News Network.

Life on the mat 

For Casey Lamb, the mat has never just been a place to compete. It's where he's spent more than four decades teaching, mentoring and testing himself.

 "It's really who I am," Casey says.  

As a Brazilian jiu-jitsu instructor, gym owner and lifelong competitor, Casey's life has long revolved around helping others grow through the sport he loves. Then chest tightness during training forced him to imagine a future without the life he had spent decades building. 

A diagnosis that raised difficult questions 

While ramping up training at his Rochester, New York, gym for an upcoming jiu-jitsu competition and staying active with his children's wrestling, Casey began experiencing chest tightness and pressure. Having seen friends and students suffer serious heart-related emergencies, he decided not to ignore the warning signs. Hoping for reassurance and a quick return to training, he sought care at his local hospital. 

Instead, he left with an unexpected diagnosis: an ascending aortic aneurysm, a dangerous weakening of the body's largest artery that can tear or rupture without warning. 

Just as devastating for Casey, the diagnosis meant he was told to stop competing and avoid the heavy exertion that had defined both his work and personal life. 

At about 4.7 centimeters, Casey's aneurysm fell below the size threshold at which surgery is typically recommended. Physicians usually continue monitoring an aneurysm until it reaches 5 centimeters or larger. 

Until then, treatment often focuses on reducing risk through lifestyle changes, including avoiding heavy lifting and limiting strenuous activities that can place additional strain on the aorta. 

For Casey, avoiding strenuous activity wasn't a temporary inconvenience. Coaching, training and competing in jiu-jitsu were central to his livelihood and daily life.  

"I'd rather have 15 years doing what I love than 30 years miserable sitting in a chair," Casey says. 

For Casey, the diagnosis threatened far more than his health. It jeopardized the identity he had spent most of his life building. 

Searching for another option 

That conviction led Casey to seek another opinion at Mayo Clinic in Rochester, Minnesota. 

There, the conversation shifted. Instead of focusing only on the size of Casey's aneurysm, specialists from cardiology, vascular medicine, sports cardiology and cardiovascular surgery worked together to understand the person behind the diagnosis — his profession, his goals and the life he hoped to return to. 

Although his aneurysm had not yet reached the standard threshold for surgery, the demands of his life as a coach, competitor and gym owner called for a more individualized approach. 

"Guidelines are essential," says Dr. Thais de Azeredo Coutinho, a Mayo Clinic cardiologist and vascular medicine specialist in the Mayo Clinic Aortic Center. But they don't replace individualized care. Some patients deserve a closer look because their circumstances aren't fully captured by the guidelines. This was Mr. Lamb's situation." 

"It wasn't, 'Here's what you have to do,'" Casey says. "It was, 'Here are your options. What do you want to do?'" 

Rather than asking him to walk away from the sport, Casey's Mayo Clinic care team focused on helping him understand the risks, weigh his options and choose the path that aligned with his goals. 

"Let's figure out how to get you back doing what you want to do," Casey recalls. "We'll tell you the risks; we'll make the risks as low as possible; we'll let you know what they are; and you make the decisions." 

For the first time since his diagnosis, Casey saw a path forward — one that didn't force him to choose between protecting his health and preserving the life he loved. 

After weighing the risks with his care team, Casey decided surgery offered the best chance to continue the activities he wanted. 

A surgery built around his goals 

The expertise and collaboration he experienced at Mayo Clinic gave him confidence in that decision. 

"I believed I was at the best place to have this procedure, with the best surgeon and the best team," Casey says. 

Dr. Gabor Bagameri, a Mayo Clinic cardiovascular surgeon who specializes in complex aortic surgery, repaired the enlarged section of his ascending aorta while preserving his native aortic valve. 

"Our goal wasn't simply to repair the aneurysm," Dr. Bagameri says. "It was to repair it in a way that gave him the best opportunity to safely return to the life he valued." 

For Casey, the operation wasn't simply about repairing his aorta. It was about preserving something equally important: the opportunity to return to coaching, competing and the community he had built on the mat. 

Back to training 

Recovery didn't end after surgery. Working with Mayo Clinic's Sports Cardiology team, Casey gradually rebuilt the strength and confidence needed to return to high-level competition.   

Every walk, every rehabilitation milestone and every workout brought Casey one step closer to a single goal: getting back on the mat. 

"I knew if I made it through surgery, I would get back to where I was because that was the plan we had put together," Casey says.  

Just three months after surgery, that plan became reality. Casey stepped back onto the mats — not as someone watching from the sidelines but as a coach, mentor and athlete once again. 

"I was back on the mats," Casey says. "I was teaching classes. I was training again." 

For the first time since his diagnosis, Casey wasn't wondering what he might lose. He was back doing what he loved. 

His students once again had their longtime coach leading classes, demonstrating techniques and training alongside them. Stepping back onto the mat wasn't simply a return to training, it was proof that the future he feared might slip away was still within reach. 

"For someone like Casey, it's about helping him return to the activities that matter most while understanding the risks involved," says Dr. Kathryn Larson, a Mayo Clinic sports cardiologist who helps athletes safely return to activity after heart conditions and procedures. 

Looking ahead 

Nearly two years after surgery, Casey says he finally feels like himself again. 

Today, Casey continues coaching, training and preparing for future competitions, including a return to the World Master Jiu-Jitsu Championship. 

The chance to pursue those goals again is something he doesn't take for granted. 

"It's just the fact that I've gotten back to it at that level," Casey says. "Doing what I love and what I've gone through, in itself, it's a victory." 

For a man who once feared he might never return to the mat, stepping back onto it became more than a comeback. It became proof that personalized care can help restore the life that matters most. 

The post Personalized heart care helps a martial arts instructor return to competition  appeared first on Mayo Clinic News Network.

Despite treatment close to home, the Indiana teenager continued to experience relapses from myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD), a rare autoimmune neurological disorder that can affect the brain, spinal cord and optic nerves. 

The disease disrupted school, affected his ability to walk and left his family worried about the future. 

"I just felt like we were one relapse away from permanent damage," says his mother, Jennifer. 

A diagnosis but not a solution 

At 10 years old, Brody's medical journey began in 2020 after a serious illness led to neurological symptoms and multiple hospitalizations. Months of testing eventually led his neurologist to order a specialized antibody test for myelin oligodendrocyte glycoprotein (MOG), a test developed by Mayo Clinic researchers. 

The result confirmed MOGAD, finally giving Brody's family an explanation for what he had been experiencing. 

The diagnosis brought answers, but managing the disease remained an ongoing challenge. 

Finding the right expertise 

As relapses continued, Jennifer wanted her son to see physicians whose careers were dedicated to treating patients with MOGAD. 

"Having somebody that knows about the disease versus somebody that's a specialist in the disease is two totally different things," she says. 

That search eventually brought the family to Mayo Clinic in Rochester, Minnesota, and to Dr. Eoin Flanagan, a neurologist specializing in autoimmune neurological disorders, including MOGAD. 

Mayo Clinic has helped shape the understanding of MOGAD through research, diagnostics and specialized care. Its contributions include launching the world's first multidisciplinary MOGAD clinic, which provides specialized care across Mayo Clinic's campuses in Rochester, Florida and Arizona. Mayo researchers also helped establish international diagnostic criteria that defined MOGAD as a distinct disease and have evaluated hundreds of patients with MOGAD, helping physicians and researchers better understand the disease and its long-term impact. 

Before Brody's first appointment, Mayo Clinic physicians had already reviewed years of his medical records, imaging studies and treatment history. 

"I was amazed at how thoughtful everybody at Mayo Clinic was," Brody says. "You weren't just another patient. They made you feel like you were their priority." 

Patients benefit from Mayo Clinic's team-based approach, which brings together specialists in neurology, neuro-ophthalmology, neuroradiology, rehabilitation medicine, neuropsychology, urology, pharmacy and laboratory medicine across Mayo Clinic's campuses in Rochester, Florida and Arizona. 

"We like to work as a team," Dr. Flanagan says. "Many heads are better than one, and a team approach really gets you further ahead than you do on your own." 

Among the opportunities available was a clinical trial for patients living with MOGAD, reflecting Mayo Clinic's ongoing efforts to advance research into the disease. Brody chose to participate. The trial is evaluating satralizumab, an investigational treatment that targets a specific immune pathway involved in inflammation. Researchers are continuing to evaluate its potential role in treating MOGAD. 

Helping others navigate MOGAD  

In 2025, Brody attended MOGAD Patient Day, the first event of its kind hosted by Mayo Clinic. Led by Mayo Clinic physicians and researchers, the gathering brought together patients, families and experts from across the country to learn more about the disease and connect with others facing similar challenges.  

By that point, Brody had spent years navigating MOGAD. At Patient Day, he found himself in a different role, helping other families who were just beginning their journeys. 

He even participated in a patient panel discussion, answering questions and sharing his experiences. 

Looking ahead 

Today, Brody is preparing for his junior year of high school. He's looking forward to earning his driver's license, spending time with friends and planning for the future. 

If he could offer advice to another young person facing a rare disease, it would be simple. 

"Keep an open mind," he says. "There are always other options. Listen to your doctors, but advocate for yourself too." 

Dr. Flanagan hopes stories like Brody's remind families that progress continues to be made for patients with complex neurological diseases. 

"There is a lot of hope," Dr. Flanagan says. "We can make diagnoses that we couldn't make many years ago, and with clinical trials of multiple novel targeted treatments underway, the future is really bright for those with MOGAD." 

The post Following years of relapses, family turns to Mayo Clinic for MOGAD expertise  appeared first on Mayo Clinic News Network.

What started as a way to stay active and take his mind off a rare diagnosis became a mission for Christopher Edgerton. 

For three weeks this summer, he'll be cycling all 21 stages of the Tour de France one week ahead of the professional race in a 2,000-plus-mile event to raise awareness for blood cancers. 

Watch: A rare diagnosis fuels one man's cycling mission to complete pre-Tour de France event 

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"I think when you're on a bike, you have to live in the moment," says Christopher. "You've got to keep your eyes on the road, but at the same time, you've got a lot of time in your own head."  

For Christopher, cycling became more than an escape. It gave him space to process and heal. 

"I had my annual visit to the doctors," Christopher says about a 2018 visit. He remembers being asked if there was anything else. "I would have said, 'No, no, I'm fine,' but I just felt a little bit tired. So (my doctor) sent me for some (bloodwork). When I saw the results, they were all red. I sort of knew enough to be dangerous. I knew it wasn't good." 

"Chris has a very rare diagnosis called Waldenstrom macroglobulinemia," says Dr. Sikander Ailawadhi, a Mayo Clinic oncologist. "It could range from numbness or tingling in hands or feet to cancer-type tumors or the blood becomes so thick, it can lead to clots and cause strokes, heart attack, etc."  

"It's not curable, but it's treatable," says Christopher. "I sort of came to terms with the idea of: 'You've got a second chance at life.'"  

His care team built a plan around what mattered most to him. 

"He wanted limited-duration treatment, something that gave him his quality of life, his independence," says Dr. Ailawadhi.  

Christopher turned to cycling, pushing himself physically and mentally. A year after his diagnosis and buying a bike, he rode from Los Angeles to Boston and raised more than $50,000 for Waldenstrom macroglobulinemia research. 

"I felt like I needed to do something to prove I wasn't done," says Christopher.  

"He has his disease under very good control," says Dr. Ailawadhi. "He's not requiring active treatment right now, but that could change. He can travel, he can do what he wants to do and excels in his passion," says Dr. Ailawadhi.  

Now, he’s taking that passion even further, riding the full route of the 2026 Tour de France one week ahead of the professional race in an event that raises awareness for blood cancers. On June 27, he will begin riding from Barcelona, Spain, to Paris, France. The 21-stage event spans more than 2,000 miles and 175,000 feet of total elevation.

"Each day I'm going to ride for somebody," he says. "Each day I can tell somebody's story." 

And for Christopher, every mile comes with a reminder of what matters most. 

"I'm just very conscious about time," he says. "Everybody's limited on time, and I want to feel like I can get as much out of the time I've got." 

The post A rare diagnosis fuels one man’s cycling mission to complete pre-Tour de France event (VIDEO) appeared first on Mayo Clinic News Network.

Tony Wazwaz was told he had days to live — until an innovative treatment approach at Mayo Clinic brought his heartbeat back into rhythm.

Tony Wazwaz is in his kitchen, cooking for his family. Clipped to his belt, two battery packs hum softly, powering the mechanical pumps inside his chest. One helps move blood to his body. The other to his lungs. Together, they do the work his heart no longer can. He takes his medications, sees his healthcare team regularly, and follows the routines that now keep him alive.

"It isn't easy," Tony says, "but I've never been more grateful."

Not long ago, his doctors in Minneapolis told the 44‑year‑old husband and father of two that no further treatment options remained. After months in and out of the hospital, his condition worsened as both sides of his heart began to fail. Fluid filled his lungs. Swelling spread through his body. Medications and temporary support devices no longer worked.

He was not a candidate for a heart transplant. Doctors told him he had about 10 days to live, and to go home to say goodbye to his family.

"That was the end of the road. There was no more road," Tony says. "But something inside me told me, 'You've got to keep fighting.'"

A new road ahead

Watch: Mayo Clinic performs its first dual mechanical heart pump procedure, giving father of two a path to transplant

Journalists: Broadcast-quality video (2:54) is in the downloads at the end of this post. Please courtesy: "Mayo Clinic News Network." Read the script.

At his mother's urging, he asked for a referral to Mayo Clinic. He made the call, got in the car and they drove to Rochester, Minnesota. He arrived in cardiogenic shock, a life-threatening condition in which the heart can no longer pump enough blood to sustain the body.

Within minutes of reaching the emergency department, his heart stopped.

"I flatlined," he says. "But when I woke up, I was in the ICU at Mayo Clinic, surrounded by a team already working to find a way forward."

Leading that team was Dr. Mauricio Villavicencio, surgical director of Heart and Lung Transplantation and Mechanical Circulatory Support at Mayo Clinic.

Dr. Villavicencio and his team moved quickly to stabilize Tony, ultimately placing him on extracorporeal membrane oxygenation, or ECMO, a form of life support that circulates blood outside the body, allowing the heart and lungs to rest.

"ECMO can keep you alive," Dr. Villavicencio says. "But it doesn't get you out of the ICU. The goal is to find a way to transition to something that allows the patient to recover, leave the hospital and move forward."

For many patients, that path involves a left ventricular assist device, or LVAD, a mechanical pump designed for long-term use that helps the heart move blood through the body. But those devices are designed to support the left side, the heart's main pumping chamber. Durable options to support the right side of the heart are limited. When both sides of the heart are failing, as in Tony's case, there are often no viable treatment options.

'Sign me up'

Dr. Villavicencio proposed something that had never been done at Mayo Clinic: implanting two durable LVADs, one to support each side of Tony's failing heart. He believed the paired devices could get him off ECMO, out of the ICU and potentially onto a path toward heart transplant eligibility.

Around Tony, a multidisciplinary team of surgeons, cardiologists, intensivists and nurses weighed the risks. They had spent weeks at his bedside, adjusting care and closely tracking his condition.

"Tony pushed the balance to do it," Dr. Villavicencio says. "And that really made it happen."

For Tony, the choice was clear.

"Sign me up," he says. "I knew this was my chance. From the time I arrived, it wasn't just one doctor, it was the whole team around me. They took the time to talk to me and get to know me. I trusted them."

A bridge to the future

Inside the operating room, the challenge was precision. Each pump had to be carefully balanced. Too much support on one side could overwhelm the other. Too little could send his organs into failure. Throughout the procedure, Dr. Villavicencio and the team adjusted the devices until his circulation stabilized.

With both pumps in place, blood flow steadied through his body. In the days that followed, his condition improved, marking a turning point in his recovery. Weeks after the surgery, Tony returned home.

Now, back in his kitchen, the rhythms of daily life have resumed as he rebuilds his strength and works toward a goal that once felt impossible: becoming eligible for a heart transplant.

"Going to Mayo Clinic saved my life," Tony says. "Dr. Villavicencio gave me another chance and I'm going to make the most of every minute."

The post Mayo Clinic performs its first dual mechanical heart pump procedure, giving father of 2 a path to transplant (VIDEO) appeared first on Mayo Clinic News Network.

A multidisciplinary team at Mayo Clinic worked together to guide urgent, complex surgical care for a first-time expectant mother

At 27 weeks pregnant, Aude Watrelot arrived at Mayo Clinic in Rochester, Minnesota, nearly blind.

For months, the university professor from Ames, Iowa, had been losing her vision little by little. At first, the changes were subtle. Lights seemed dimmer. Contrast became harder to distinguish. But as her symptoms rapidly worsened, Aude was facing a diagnosis that threatened not only her future, but one of life's most precious moments.

Without prompt treatment, she faced permanent blindness — and the possibility that she might never see her son's face.

Vision loss worsens

Aude's symptoms began in June 2025, at a time when she and her husband, Nicolas Delchier, were preparing for a long-awaited new chapter: welcoming their first child after a successful second in vitro fertilization (IVF) attempt.

What began as slight visual changes soon became debilitating. Nicolas began helping Aude write emails, respond to text messages and manage everyday tasks because she could no longer see well enough to do them on her own. Around the same time, Aude's mother noticed her pupils appeared unusually dilated and urged her to seek more testing.

Following a visit to her ophthalmologist — who found nothing immediately concerning — Aude went to her local emergency department to search for answers.

After extensive testing, an MRI revealed the reason her world had been going dark: a large, previously undetected tumor at the base of her skull, near the pituitary gland.

Given the complexity of her condition and the risks posed to both mother and baby, Aude was transferred immediately to Mayo Clinic in Rochester for further evaluation and treatment.

The diagnosis

At Mayo Clinic, the seriousness of her condition became clear. Aude's care team explained that the mass in her brain was a benign meningioma —  one of the most common types of primary brain tumors, accounting for about one-third of all reported brain tumor cases.

Its location made it especially dangerous. By then, the tumor was placing relentless pressure on her optic nerves and was threatening other delicate areas of the brain and related functions.

The diagnosis forced Aude and Nicolas to confront frightening uncertainty about both her health and their baby's future.

"Of course I was scared for myself," Aude says. "But more than anything, I was terrified for our baby. I kept thinking: What does this mean for him? Is he going to be OK?"

Planning care for mother and baby

A multidisciplinary team of specialists convened to determine the safest plan of action. Every decision had to account for both Aude's health and the baby's.

Panos Kerezoudis, M.D., chief resident in neurosurgery, remembers the urgency of the situation.

"If she had not been pregnant, we likely would have recommended surgery immediately to try to reverse the vision decline," Dr. Kerezoudis says. "What complicated the situation was her pregnancy, so everyone was extremely sensitive to protecting both the patient and the baby."

Following extensive conversations with Aude and Nicolas, specialists from neurosurgery and maternal-fetal medicine developed a carefully coordinated plan to proceed with surgery two weeks later. The timing allowed the team to optimize care for both Aude and her baby while minimizing the risk of permanent vision loss.

Another critical decision involved fetal monitoring. Initially, the obstetrics team discussed monitoring the baby during surgery. But after further review, Linda Szymanski, M.D., a maternal-fetal medicine specialist, recommended only monitoring before and after the procedure.

The reason, she says, was straightforward: once the delicate brain surgery began, there would be no safe way to stop mid-operation and deliver the baby if fetal distress occurred.

Aude says the team explained the plan, risks and uncertainties with compassion and clarity.

"What really stood out to me throughout the process was how human everyone was," she says. "The physicians explained things thoroughly while still treating us like people, not just patients. That made the entire experience feel much less frightening."

A high-risk procedure

Aude's surgery was scheduled for August 27, and was expected to last about 10 hours.

To successfully accomplish a surgery as extensive and high-risk as Aude's took a large, interdisciplinary team including neurosurgeons, maternal-fetal medicine specialists, anesthesiologists, neonatologists, neurologists, ophthalmologists, otolaryngologists, registered nurses, certified surgical technicians and others.

On the day of surgery, Aude was afraid for both herself and her baby. Despite this, she trusted her care team and felt reassured knowing she was surrounded by people deeply committed to protecting them both.

Jake Eide, M.D., an otolaryngologist specializing in sinus and skull base surgery, performed the initial endoscopic transnasal transsphenoidal (through the nose) approach to expose the tumor. Then Gelareh Zadeh, M.D., and the neurosurgical team performed the tumor removal itself.

The ENT and neurosurgery teams remained together throughout the 10-hour operation, sharing visualization and helping navigate critical anatomy near the optic nerves and internal carotid artery, one of the major blood vessels supplying the brain.

For Aude, the time passed instantly under anesthesia. For Nicolas, the wait felt like time stood still.

Watch: Brain tumor surgery at Mayo helped protect a mother's vision during pregnancy

Journalists: Broadcast-quality video (2:58) is in the downloads at the end of this post. Please courtesy: "Mayo Clinic News Network." Read the script.

Careful monitoring after surgery

Aude awoke to the news that her surgery had been successful and that their baby was OK, although his heart rate was elevated. To be cautious, Aude was transferred to Labor and Delivery for closer obstetric monitoring in case delivery became necessary.

A few days into recovery, her vision improved dramatically and the baby's heart rate returned to normal.

During this time, she and Nicolas learned that the surgery team had left a small portion of tumor behind intentionally. This was because it was attached so closely to Aude's right optic nerve that removing it could have increased the risk of permanently harming her vision or causing other serious complications.

"My vision wasn't perfect at this point, but it was remarkable compared to where I had been before surgery," Aude says.

After receiving clearance to go home in mid-September, Nicolas and Aude made their way back to Iowa.

An unexpected return

They had been home for a week when Aude's water unexpectedly broke after just having ordered dessert at a restaurant.

It was September 21 — six weeks before her estimated due date. The couple rushed to their local emergency department, but because of Aude's recent surgery, the safest option was to return to Mayo Clinic, less than three hours away.

Back in Rochester, Aude was reunited with many of the same providers who had been with her just weeks earlier. There was comfort in knowing she was surrounded by a team that already understood her story, her condition and the complexity of her care.

A healthy delivery

On September 24, Aude and Nicolas met their son — a healthy baby boy born via cesarean section at Mayo Clinic Hospital — Rochester, Methodist Campus.

They named him Victor — a name meaning "conqueror."

For Aude and Nicolas, the meaning reaches far beyond the definition. Though they had loved and chosen his name long before his birth, it came to reflect the family's recent journey — one defined by overcoming adversity through one of the most difficult seasons of their lives.

Today, Aude's vision has been fully restored, and Victor is a happy, thriving 8-month-old.

Dr. Zadeh continues to connect with Aude while she receives follow-up imaging close to home. The small amount of residual tumor is being monitored and may be treated in the future if needed.

For now, Aude and Nicolas embrace parenthood with gratitude — for restored vision, a healthy son and a care team that helped protect both.

The post Facing permanent blindness, an expectant mother undergoes brain tumor surgery (VIDEO)  appeared first on Mayo Clinic News Network.

By the time Dr. Jamie Kane arrived at Mayo Clinic in 2024, he had largely stopped believing his condition could be cured.

For nearly a decade, Jamie had lived with a head and neck arteriovenous malformation (AVM), enduring repeated procedures, chronic pain and growing risks to his heart.

"I had kind of settled into thinking, 'OK, this is just a lifelong condition,'" says Jamie.

A diagnosis that changed everything

Jamie's symptoms appeared in 2015 during his first year at the University of Manchester in England. What initially seemed like mild swelling on the right side of his neck eventually led to the diagnosis of an AVM, a condition in which arteries connect directly to veins, bypassing the body's normal capillary network.

Over the following years, Jamie underwent multiple embolization procedures that temporarily slowed the AVM but failed to stop its progression. The pain intensified, and the malformation continued to grow.

Specialists at international medical centers had determined that the surgery required to remove his AVM was too dangerous.

Jamie recalled that one surgeon told him, "The risks for surgery are too great. There is a 50% chance that you will be dead."

An unexpected opportunity

In 2024, Jamie moved to Rochester, Minnesota, to begin a postdoctoral research position at Mayo Clinic. After settling into his new role, Jamie decided to seek one more medical opinion.

"I did have it in the back of my head that Mayo might be able to do what others were not able to do," says Jamie.

He was evaluated at Mayo Clinic's Vascular Anomalies Clinic, where physicians quickly recognized the severity of Jamie's condition.

"When I first met Jamie, my main concern was the fact that the AVM was so high flow that it was causing a significant impact on his heart," says Dr. Waleed Brinjikji, an interventional radiologist at Mayo Clinic in Rochester. "This was not just a cosmetic concern but was causing some real physiological compromise."

Further evaluation from Dr. Ruben Crespo-Diaz, a cardiologist at Mayo Clinic in Rochester, revealed that Jamie was developing high-output heart failure because of the AVM, meaning that his heart could not keep up with the high flow of blood.

"The progression of heart failure was inevitable," says Dr. Waleed Gibreel, a plastic and craniofacial surgeon at Mayo Clinic in Rochester, who would eventually lead the surgery.

Preparing for a high-risk operation

The first step was to assemble a team that could study Jamie's case and present him with a treatment option. Dr. Gibreel called on colleagues from Neurosurgery, Otolaryngology (ENT), Vascular Surgery and Anesthesiology.

Once the team was identified, in the months leading up to the surgery, Dr. Brinjikji performed a series of embolization procedures to reduce blood flow through the AVM and increase the likelihood of surgical success.

"The embolization procedures were intended to slow blood flow by 90% to simplify the operation as much as possible so that Dr. Gibreel and the team could perform the surgery safely," says Dr. Brinjikji.

For the surgical team, preparation involved constant collaboration across specialties, from reviewing scans together and mapping altered anatomy to coordinating every phase of the operation.

However, even with the extensive preparation, the stakes were extraordinarily high.

"Any surgical treatment option in this situation comes with a risk of potentially uncontrollable bleeding, so the hesitation other centers had was understandable," says Dr. Gibreel. "Cases like Jamie's require an entire multidisciplinary team prepared to take on exceptionally complex problems, and that's what Mayo Clinic is uniquely positioned to do."

A surgery made possible by a dedicated team

In February 2025, Jamie underwent the operation that many believed could not be performed.

Teams worked simultaneously throughout the nearly 12-hour surgery to remove the AVM from Jamie's neck and skull base while reconstructing critical tissue and blood vessels affected by the malformation.

"As part of the reconstruction, we took tissue from Jamie's thigh and created new blood vessel connections in his neck," says Dr. Gibreel.

To fully remove the AVM, surgeons also had to sever nerves controlling certain movements in Jamie's shoulder. During reconstruction, the team performed a nerve transfer — reconnecting nearby nerves to help preserve shoulder function.

Jamie spent several days recovering in the intensive care unit as his care team monitored closely for complications that they had spent months preparing to prevent.

Despite the complexity of the procedure, Jamie's recovery progressed better than anticipated.

'It was gone.'

Months later, Jamie returned for a follow-up angiogram.

The team expected the imaging would likely show some residual signs of the AVM. Instead, the scan revealed something extraordinary.

"It was gone," says Dr. Brinjikji. "The angiogram looked completely normal. You would have never guessed there was anything there."

Additional imaging confirmed the AVM was completely gone, and Jamie's heart function had returned to normal.

"What I saw was the impossible becoming possible," says Dr. Brinjikji.

For Dr. Gibreel, caring for Jamie also reflects what becomes possible when a multidisciplinary team unites around a shared purpose.

"Every single person's effort counts," says Dr. Gibreel. "This was not about the skill set of one person or the surgeons in the operating room. It was every single person — the nurses, anesthesia team, the ICU staff — who saw a common goal at the end, to give Jamie a second chance at life."

Today, Jamie is pain-free and continuing his postdoctoral research at Mayo Clinic — something that he once thought might not be possible. "I don't really know how to express my gratitude," says Jamie. "Thank you feels inadequate."

Watch: Multidisciplinary care teams at Mayo accompany Jamie on his medical journey.

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