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

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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.

After years of unexplained symptoms and incorrect diagnoses, a former Division I athlete and nurse finally received a diagnosis — and coordinated care — that saved her life.

For years, Sara Hutchinson tried to make sense of a body that no longer felt like her own.

Sara's symptoms began in 2016, when she was 21 and balancing life as a Division I rower and nursing student at the University of Iowa. 

Despite an intense training schedule and healthy habits, she began gaining weight rapidly. Panic attacks followed. Then came hair loss, severe acne, facial swelling and insomnia. 

Over four years, Sara sought help from 12 different specialists, underwent exploratory surgery and multiple CT scans, and received a series of incorrect diagnoses — including, at one point, lung cancer.

Trusting her instincts

As the years passed and her symptoms worsened without answers, Sara, now in nursing graduate school, recalled a brief mention of Cushing syndrome from her coursework  — and felt compelled to revisit its symptoms. One by one, they aligned with her own.

Unable to shake her intuition, Sara pressed for more specialized testing — but says her concerns were repeatedly dismissed.

"I was advised to see a psychiatrist because they believed I was a hypochondriac," Sara says.

After repeated rounds of testing and walking away with more questions than answers, Sara turned to Mayo Clinic.

"Mayo Clinic was my 13th opinion. I always call it my lucky number 13," she says.

Assembling her care team

When Sara reached out to Mayo Clinic in Rochester, Minnesota, in December 2020, she did not ask for general help. She specifically requested Dr. Irina Bancos, an endocrinologist, and Dr. Jamie Van Gompel, a neurosurgeon. Sara says she viewed them as her "dream team" — the people most likely to recognize what others had not.

The response from Mayo Clinic was immediate. At‑home lab kits were sent to Sara's home in Iowa within 24 hours. She completed the testing, sent it back, and soon learned that her results showed a concerning elevation in her cortisol levels.

Dr. Bancos promptly scheduled a virtual visit with Sara to discuss the results.

"It was quite clear to me that Sara had Cushing syndrome just by looking at her face through the computer screen," Dr. Bancos says.

Cushing syndrome is the general term for cortisol overproduction and can cause symptoms such as rapid weight gain, a rounded or puffy "moon face," acne, and purple stretch marks. Because the condition is rare and shares symptoms with more common disorders such as polycystic ovary syndrome, it is often misdiagnosed in young women.

There are several types of Cushing syndrome. The most common is caused by a small, usually noncancerous tumor in the pituitary gland at the base of the brain. The tumor produces excess adrenocorticotropic hormone, or ACTH, which signals the body to make too much cortisol.

When Cushing syndrome is caused this way, it is called Cushing disease.

Although Dr. Bancos suspected this diagnosis, confirmation required imaging and further evaluation with Dr. Van Gompel in Neurosurgery.

Finally, a diagnosis

"Throughout my illness, I hadn't cried once," Sara says. "The night before my first in-person appointment for imaging at Mayo Clinic was the first time I cried — not out of fear, but out of relief and hope that I was finally going to get answers."

A  7-Tesla (7T) MRI at Mayo Clinic confirmed what her care team suspected: a pituitary tumor was driving excess cortisol and causing Sara's Cushing disease. 

The 7T MRI produces ultrafine, highly detailed brain scans and can detect certain abnormalities with greater precision than most current imaging systems. As of May 2026, Mayo Clinic is the only institution in the world with three clinical 7T MRI scanners — one at each of its campuses in Rochester, Arizona and Florida

According to Dr. Van Gompel, these tumors are often so small that up to half of patients show no visible signs on standard imaging — making advanced, high-resolution imaging essential.

After years of uncertainty, the diagnosis brought relief.

"I felt overwhelming confidence in my care team," Sara says. "I was genuinely excited to move forward with surgery and hopeful about returning to a normal life."

Caring for patients with Cushing disease requires a seamless, multidisciplinary approach. Endocrinology and Neurosurgery work in close coordination, with Drs. Bancos and Van Gompel guiding patients from diagnosis through treatment and engaging additional specialists to support each patient's individual needs.

With the tumor identified, Sara was offered urgent surgery — as soon as the following day. Without treatment, she was told, excess cortisol would continue to damage her organs and become life-threatening within months.

"After years with no answers, it all felt so sudden," Sara says. "I didn't want to let my co-workers down, so I asked to work a few more shifts before surgery so they could prepare for my absence."

The turning point

On Feb. 18, 2021, Sara returned to Mayo Clinic for minimally invasive endoscopic surgery to remove her tumor. The procedure was completed without complications, and no residual tumor tissue remained.

"I had been struggling for many, many years," she says. "I remember counting down the minutes until surgery, thinking, 'Let's do this.'"

After surgery, she put her nursing graduate studies on hold to focus on recovery. The procedure itself was easy, she says, but recovery from the effects of Cushing disease can be long and challenging, even after successful treatment. 

As the body adjusts to lower cortisol levels, patients may experience long-term fatigue, body aches, nausea and mood changes. 

Dr. Bancos often compares this phase to caffeine withdrawal.

"Imagine drinking six cups of coffee a day for years, then suddenly cutting back to just one. Just as the body adapts to high caffeine levels, it also adjusts to elevated cortisol in Cushing disease," she says. "Even normal levels can feel way too low at first."

For Sara, recovery required patience. She began hormone therapy to help regulate her body, then gradually tapered off as her system adjusted. The process brought months of fatigue and discomfort before she slowly began to feel like herself again.

Her annual lab results have remained stable, and she has been in remission since 2021.

A future reclaimed

Sara's experience at Mayo Clinic showed her what care can look like when patients are heard, believed and supported by the right team.

"After everything I went through, I felt incredibly grateful for a second chance at life and began thinking about how I wanted to use it," Sara says.

Within six months of surgery, she was able to return to graduate school and received her nurse practitioner license. Soon after, Sara came back to Mayo Clinic as a healthcare professional — a way to give back to the place she credits with saving her life.

Today, she works in the Plastic Surgery Cleft and Craniofacial Clinic, where she says she occasionally cares for  Dr. Van Gompel's post-neurosurgery patients — a connection not lost on her.

Her story now carries a message for others who feel unheard: Keep pushing.

"Advocating for yourself is incredibly important," she says. "It's essential to find healthcare professionals who listen to you and feel like the right fit."

For Sara, the turning point came when persistence met the right expertise at Mayo Clinic.

As both a former patient and a clinician, she carries that experience forward. The date of her surgery — engraved on a necklace from her grandmother — is a reminder of the life she fought for and the care she now hopes to provide others who are still searching for answers.

The post After 12 opinions, Mayo Clinic became her ‘lucky number 13’  appeared first on Mayo Clinic News Network.

When Dr. Bobby Mukkamala found himself on the other side of the exam table, he relied on the cutting-edge surgical techniques at Mayo Clinic to get him back to his professional work. 

While presenting at a professional meeting, Dr. Bobby Mukkamala, normally an eloquent speaker, began speaking incoherently for about 90 seconds. 

"Given my age of 53 at the time, I thought it was a 'senior moment,'" says Dr. Mukkamala, an otolaryngologist and head and neck surgeon from Flint, Michigan. 

His colleagues suspected he was having a stroke and convinced Dr. Mukkamala to go to a nearby emergency department for evaluation. Doctors suggested he may have had a transient ischemic attack, or ministroke. They recommended an MRI when he returned home.

That scan revealed something far more serious: a brain tumor. His journey as a patient had begun — and it would ultimately lead him to Mayo Clinic. 

Finding the right brain cancer care

After sharing the news with his family, Dr. Mukkamala tapped into his professional network. "Within a week of my diagnosis, I had half a dozen Zoom calls with neurosurgeons around the country," he says. "They were all wonderful with similar but slightly different perspectives on how to approach my case."

One call, however, stood out — his conversation with Dr. Ian Parney, (pictured here) a neurosurgeon at Mayo Clinic in Rochester, Minnesota and member of Mayo Clinic Comprehensive Cancer Center.

Dr. Parney knew the tumor was large, complex and near critical speech areas in the brain. "It was important to Dr. Mukkamala to protect those areas," says Dr. Parney.   

Unlike other surgeons who recommended two brain surgeries, Dr. Parney recommended a single awake craniotomy with speech mapping. During the procedure, the patient answers questions, and brain activity is monitored. This helps surgeons avoid damaging parts of the brain responsible for speech. His extensive experience — about 200 similar brain tumor procedures per year — gave hope to Dr. Mukkamala that the single operation was the best choice.

"Dr. Parney spent time answering every question we had," Dr. Mukkamala says. "That is what healthcare should be. As soon as we got off the call, my wife and kids said, 'That's it. That's where you're going.'"

Using advanced surgical techniques to guide care

In December 2024, Dr. Mukkamala underwent an awake craniotomy with speech mapping. The surgical team also used an intraoperative MRI. This advanced imaging technique provides real-time, high-resolution MRI scans while the surgery is in progress. 

"We do an MRI during the procedure to get the most accurate image so that we can remove the tumor safely," says Dr. Parney. Integrating functional imaging into image-guided systems in the operating room is a technique that Dr. Parney's team develops and tests to improve patient safety. He also correlates these techniques with novel strategies such as intraoperative electrophysiological mapping (using electrodes or electrical simulation to identify and preserve functions) and fluorescence-guided resection.

In Dr. Mukkamala's case, as part of the speech mapping, Dr. Nuri Ince, a professor of neurosurgery and biomedical engineering at Mayo Clinic, provided a novel electrocorticography technique that showed critical areas of function without requiring direct cortical stimulation (electrical signals to the brain's outer layer), as is usually necessary.

Dr. Parney and his colleagues were able to remove more than 90% of Dr. Mukkamala's tumor without damaging the speech areas. Six weeks after surgery, he was once again speaking professionally and confidently to large groups.

Coordinating multidisciplinary cancer care

Dr. Mukkamala's cancerous brain tumor was a low-grade IDH-mutant astrocytoma. This type of brain tumor arises from astrocytes (a type of glial cell in the brain) and carries a mutation in the IDH (isocitrate dehydrogenase) gene. 

After surgery, Dr. Mukkamala met Dr. Ugur Sener, a neuro-oncologist at Mayo Clinic, who prescribed a new targeted drug to treat any remaining cancerous cells. The less toxic therapy allowed Dr. Mukkamala to avoid chemotherapy and radiation, which are standard treatments for brain cancer that can cause side effects such as fatigue and nausea. 

"We've built one of the largest brain tumor practices in the world here at Mayo," Dr. Parney says. "We have the right resources and the right teams in place to provide cutting-edge therapies and holistic care."

Bringing new 'tumor wisdom' to the bedside

While his life today looks much like it did before his diagnosis, Dr. Mukkamala says his perspective is forever changed by his experience. "I used to be more science than emotion, but I've learned there's room for both," he says. 

Dr. Mukkamala was alone when he received the news that he had cancer, much like most of his patients were when he delivered hard news. "It never occurred to me before that it was a problem to share a diagnosis when a patient was alone," Dr. Mukkamala says. He now tries to ensure his patients have support. 

It's one of the many lessons he attributes to "tumor wisdom." "My brain may be a little smaller," says Dr. Mukkamala, "but I think it's happier and wiser."

The post How advanced surgical skills returned a physician to the podium after brain cancer appeared first on Mayo Clinic News Network.

Fifty-four-year-old Chris Sams of Arizona has been living with coccidioidomycosis, more commonly known as valley fever, for nearly a decade. When his symptoms worsened and standard treatments failed, he turned to Mayo Clinic's Cocci Clinic in Arizona — one of the few centers in the country that treats the most advanced and complicated cases.

Now, on a more aggressive antifungal treatment, Chris says Mayo Clinic's multidisciplinary team approach has made all the difference.

Valley fever can be serious, especially when it spreads beyond the lungs. In rare cases, as it did with Chris, the coccidioides infection can reach the brain and cause neurological damage, requiring intensive treatments.

Watch: When valley fever spreads - Meet Chris and his complex case

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"I think I was biking up to 150 miles a week. I was biking quite a bit, lot of wind, lot of sand, lot of dust," says Chris.

That dust may have carried fungal spores that infected Chris with valley fever — a lung infection caused by breathing in spores that live in the soil but can become airborne.

"I was always sick. I was worn down. I lost a massive amount of weight. And that's really what threw us over the edge, is that something was going wrong," he says.

He ended up in the hospital.

"They put me in isolation floor because they didn't know if I had cancer, tuberculosis or if it was the continuance of valley fever," he recalls.

Tests confirmed it was valley fever, also known as coccidioidomycosis or cocci. The majority of people who get cocci recover well on their own, but in a small number of people, like Chris, the fungal spores can spread beyond the lungs, causing severe or even life-threatening symptoms.

"Less than 5% of people have it spread outside of the lung. It can go to many different places: bones, soft tissues and potentially the central nervous system. And, unfortunately, while it is a small percentage of people, when it does get into the central nervous system, it causes potentially devastating consequences," says Dr. Marie Grill, a Mayo Clinic neurologist.

In Chris' case, the spores had spread to his brain. That's when he sought help at Mayo Clinic's Cocci Clinic in Arizona, where a multidisciplinary team of specialists treats the most serious and complex cases of valley fever.

"Now we have our roadmap. We have a direction on where we're going — because otherwise, everything is just spiraling out of control," says Chris.

He began undergoing a special treatment delivered every few weeks right to his brain.

"It's an antifungal medication which can be delivered intravenously but can also be delivered directly into what we call the intrathecal space, which is essentially directly into the spaces where we have the spinal fluid," explains Dr. Grill.

The good news is doctors say Chris is showing signs of improvement.

"They think that there is an end in sight and hopefully we will wean off the intrathecal treatments. I mean, we've weaned it down to every two weeks," he says.

Doctors have yet to determine how long the treatments will need to continue, but Chris is confident he's heading in the right direction, with the right team.

"I have the best committed team around that talk to me, care about me, talk to me as a person and want me fixed."

While the Cocci Clinic cares for patients with serious cases of valley fever, Mayo Clinic is also advancing the field with a faster, more accurate test to speed up diagnosis and treatment.

Related post:

• (VIDEO) Faster diagnosis for valley fever: New test in development

The post (VIDEO) When valley fever spreads: Meet Chris and his complex case appeared first on Mayo Clinic News Network.

Just one day after undergoing brain shunt surgery at Mayo Clinic, 75-year-old Minoo Press put his wheelchair aside and walked out of the hospital on his own. For the first time in two years, his mind was clear. His balance had returned. He was no longer losing control of his bladder. 

The significant turnaround followed two years of steady cognitive and physical decline. A retired engineer known for his sharp mind and independence, Press gradually withdrew from daily life. Even simple routines became impossible. 

He visited leading medical centers across the country, undergoing spinal taps, surgical procedures and advanced imaging to evaluate for conditions ranging from Alzheimer's disease to Parkinson's. 

Some clinicians at those institutions also considered normal pressure hydrocephalus, a condition in which excess fluid builds up in the brain. But because Mr. Press' symptoms overlapped with signs of neurodegenerative disease, the doctors could not confirm the diagnosis or recommend surgery. They told him there was nothing more they could do. 

From rapid diagnosis to life-changing care

After an exhaustive search for answers, Press' family brought him to Mayo Clinic where he was evaluated by Dr. David Jones, a neurologist and director of Mayo Clinic's Neurology Artificial Intelligence Program.   

Dr. Jones used an innovative artificial intelligence tool developed by his team, called StateViewer. The tool works with a widely available brain scan known as fluorodeoxyglucose positron emission tomography, or FDG-PET, comparing a patient's brain activity to thousands of confirmed dementia cases. It highlights patterns linked to nine types of the disease — from Alzheimer's and frontotemporal dementia to less common forms with overlapping symptoms. 

In a recent study published in Neurology, the tool identified the correct dementia type in 88% of cases and helped clinicians interpret scans up to three times more accurately and twice as fast as standard methods.  

In Press' case, the tool helped Dr. Jones rule out Alzheimer's and other types of dementia. That was the turning point.  

With neurodegenerative disease ruled out, Dr. Jones diagnosed Press with normal pressure hydrocephalus and confirmed that he was a candidate for a shunt procedure to relieve the pressure on his brain and potentially reverse the symptoms.  

A last-minute surgical cancellation made it possible for Press to have the procedure that same week.

Within three days at Mayo Clinic, he had a clear diagnosis, a treatment plan and underwent brain surgery to place a shunt that would drain excess fluid from his brain. The procedure was performed by Dr. Ben Elder, a neurosurgeon and clinician-scientist.  

Press, who traveled from Chicago, noticed immediate improvements. His thinking was sharper, his steps steadier and he felt like himself again. 

A clear mind, steady steps and hope

Dr. Jones says Press' case highlights the promise of combining AI with clinical care to accelerate diagnosis, scale expert clinical knowledge and help guide treatment planning.  

"When you're looking at overlapping symptoms, it's easy to miss the underlying cause," Dr. Jones says. "StateViewer gave us the clarity we needed to make an informed diagnosis and take action." 

Press continues physical therapy and says he's improving every day. He hopes his story can help others who are navigating the same often misdiagnosed and debilitating condition. 

"I can enjoy time with my family again and I can go out with my friends. I can even do my own taxes. These are the moments I thought I had lost forever," Mr. Press says. "Mayo Clinic gave me my life back." 

Related article:

Mayo Clinic's AI tool identifies 9 dementia types, including Alzheimer's, with one scan

Mayo Clinic researchers have developed a new artificial intelligence (AI) tool that helps clinicians identify brain activity patterns linked to nine types of dementia, including Alzheimer's disease, using a single, widely available scan — a transformative advance in early, accurate diagnosis. Read more.

The post How a Mayo Clinic neurologist used AI to help restore a patient’s health appeared first on Mayo Clinic News Network.

For Anthony Maita, 'Buddy' is not just any other dog.

"He's the best thing that's ever happened to me," says Anthony.

It's no wonder, considering Buddy was right by Anthony's side during one of the most challenging times of his life — when Anthony began having epileptic seizures.

Watch: When seizures don't stop: Anthony's battle against drug-resistant epilepsy

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"I started having the seizures, noticeable seizures, and from there, it just started getting worse and worse," recalls Anthony.

It began after Anthony graduated from high school. He was making plans for his future and looking forward to attending college. That's when the seizures began.

Initially, the seizures were mild but quickly became more severe. "The experience (seizure) is like a loss of time, like a blank spot in your memory — like you're waking up without any recollection of what happened," says Anthony.

"The seizures were several times a week. His lips would be blue. His mouth would be blue," says Patricia Maita, Anthony's mother. "It so hard to see your child go through that and feel so helpless."

Doctors tried to manage Anthony's seizures with medication, but nothing worked. Eventually Anthony was diagnosed with drug-resistant epilepsy, or DRE.

In search of hope, Anthony's family turned to Mayo Clinic in Arizona.

"Up to a third of patients who develop epilepsy during their life will become resistant to medication," explains Jonathon J. Parker, M.D., Ph.D., a neurosurgeon at Mayo Clinic who specializes in treating the most serious and complex cases of epilepsy, including DRE.

"These patients have tried at least two medications, and they're still having seizures. At that point, we know the chances of seizure freedom unfortunately become very low, and that's when we start looking at other options," says Dr. Parker.

A battle for millions worldwide

Anthony is one of approximately 50 million people worldwide diagnosed with epilepsy. It is one of the most common neurological disorders globally. It is characterized by recurrent unprovoked seizures caused by abnormal electrical activity in the brain.

Of those diagnosed with epilepsy, approximately 30%, or 15 million people, are considered medication-resistant. Uncontrolled seizures often rob many people of their ability to live and function independently.

While it is rare, seizures can lead to sudden unexplained death in epilepsy, or SUDEP. "We know that more frequent seizures mean the patient is at higher risk of SUDEP, so that's why we are very aggressive about treating epilepsy with all the tools we have available," says Dr. Parker.

Current treatment options for patients with DRE include surgical procedures such as brain resection to remove a portion of the brain tissue responsible for generating seizures. A less invasive procedure involves laser ablation therapy that pinpoints and destroys abnormal brain tissue. While often effective, these surgical approaches carry the risk of possible side effects, such as memory impairment, motor deficits and speech difficulties. 

Neuromodulation is another surgical approach that uses electrical or magnetic stimulation to interrupt abnormal neural activity without removing brain tissue.

Unlocking new hope for patients

Now, a growing number of scientists across the globe are part of an innovative trend in research, investigating novel ways to treat DRE. It involves the use of regenerative medicine as a "reparative" approach to help the brain heal. 

Dr. Parker is the lead investigator of the first-in-human clinical trial at Mayo Clinic which studies the use of implanted specialized inhibitory brain cells as a potential reparative treatment for DRE. Dr. Parker's clinical trial is underway in Arizona.

Mayo Clinic in Arizona is one of 29 sites nationwide participating in the inhibitory brain cell implant clinical trial for patients with focal epilepsy, where seizures originate in a specific region of the brain. 

Anthony became Mayo Clinic's first patient to undergo the investigational brain cell implant. 

"We use a very minimally invasive technique where we inject the inhibitory cells through a pencil eraser-sized incision in the back of the head. Our hope is that, over time, these cells become part of the brain and help repair the neural circuitry, and reduce or prevent seizures without the side effects," says Dr. Parker. The cells are implanted in a one-time, single-dose procedure.

"Honestly, it was pretty easy," says Anthony. "I had no trouble with it." Anthony was discharged from the hospital the next day.

Doctors say it is still too early to determine whether the brain cell implant was effective, but they are hopeful.

"Anthony has been doing great since the procedure," says Dr. Amy Z. Crepeau, a neurologist at Mayo Clinic. "We have a great deal of optimism in regard to the potential of this brain cell therapy. Developing a safe and effective, minimally invasive treatment that does not carry the possible negative side effects could be a game changer in treating patients with DRE and improving their quality of life."

Tabitha's life-long struggle to control seizures

Tabitha Wilson lives in fear, never knowing when or where the next seizure will strike.

The Florida resident was diagnosed with epilepsy at the age of 2. She was placed on medication that adequately managed her seizures — until the week before her high school graduation. 

"I was 17 years old sitting in history class when the seizure happened," recalls Tabitha. "They had to load me up in an ambulance in front of the whole school."

Tabitha tried new types of medications, but the seizures only got worse.

"I fell down a flight of stairs, burned myself while cooking. I've completely blacked out and don't know where I am or who you are," says Tabitha. She was eventually diagnosed with drug-resistant epilepsy.

Tabitha underwent three brain surgeries to treat her DRE. Still, the seizures continued.

"I'll have good days and bad days. Some days, I'll have two, three, four seizures, back-to-back," says Tabitha.

Her uncontrolled seizures have robbed Tabitha of the ability to live independently. "I can't drive. I can't cook. I can't go swimming alone. I can't take a bath, only a shower and if someone is home with me," says Tabitha.

Watch: Tabitha Wilson shares what it's like to live with drug-resistant epilepsy.

Tabitha turned to Mayo Clinic in Florida where she learned about a clinical trial also investigating the potential of regenerative medicine as a possible treatment for DRE.

Dr. Sanjeet S. Grewal, director of stereotactic and functional neurosurgery at Mayo Clinic, is leading a team of researchers studying the use of implanted stem cells in conjunction with deep brain stimulation for patients like Tabitha.

Deep brain stimulation is one of the most recent FDA-approved methods of neuromodulation therapy for epilepsy. Studies show that patients who undergo deep brain stimulation experience median seizure reduction up to 70% after five years. However, Dr. Grewal says it is uncommon for patients to become seizure-free. 

"Unfortunately, neuromodulation doesn't give us the seizure freedom we want, and that's why we are trying to combine deep brain stimulation with stem cell therapy to see if we can increase the efficacy of neuromodulation," he says. 

Tabitha became the first patient to undergo the investigational treatment. Dr. Grewal says she is also the first person in the world to undergo surgery for deep brain stimulation and receive stem cell therapy in the thalamus in her brain as a potential treatment for DRE. 

Watch: Dr. Sanjeet Grewal, neurosurgeon, explains how Mayo researchers are leading a new trend in research for treating patients with drug-resistant epilepsy.

The clinical trial involves the use of mesenchymal stem cells, a type of adult stem cell that has anti-inflammatory properties. MSCs may also support tissue repair and healing. Further scientific research is needed to confirm their therapeutic potential in the field of regenerative medicine.

The MSCs used in the clinical trial are derived from fat tissue and created at the Human Cell Therapy Laboratory at Mayo Clinic in Jacksonville, Florida under the leadership of Abba Zubair, M.D., Ph.D., a pioneer in cell therapy.

Dr. Zubair's research teams have developed a cost-effective method of producing MSCs for use in potential treatments for conditions such as stroke.

Dr. Zubair has also led innovative research, including sending stem cells to the International Space Station to investigate how microgravity impacts their growth.

"My mission is to discover ways to address problems that patients have been struggling with and find a solution for them.
I believe the future is bright. "

Dr. Abba Zubair, Pioneer in Cell therapy, Mayo Clinic in Florida

Dr. Zubair has several research projects scheduled to launch into space in 2025.

"MSCs are what we call multipotent, meaning they can differentiate into different cell types based on where they're placed. If they are placed near blood vessels, they can become blood vessel types. If they're placed by heart cells, they can become heart cell types," explains Dr. Grewal.

The hope is the MSCs eventually become neural or brain cell types and interact in the part of the brain where the seizures occur. "It's called paracrine signaling, where they're releasing signals to the brain tissue around them and interacting in a way to try to repair that tissue."

Since undergoing the procedure, there has been an improvement in Tabitha's seizure management. However, Dr. Grewal says it is too early to know whether this is due to the deep brain stimulation, stem cells or both. 

Drs. Grewal and Parker say there is still a long road ahead to determine whether these cell therapies are proven safe and effective for patients with DRE. But they agree each day brings them one step closer to a potential treatment or cure for patients like Tabitha and Anthony.

"We've thought about this for generations, we just didn't have these technologies to enable it. Now we do," says Dr. Grewal. "So, whether it's wound healing, neurodegeneration, epilepsy or stroke, there are so many different studies going on investigating the potential of regenerative or reparative therapies."

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The post (VIDEO) When seizures don’t stop: The battle against drug-resistant epilepsy appeared first on Mayo Clinic News Network.

There is new hope in the fight against glioblastoma, the deadliest and most aggressive form of primary brain cancer.

Currently there is no cure, but results of a new study conducted at Mayo Clinic show patients experienced improved overall survival while maintaining quality of life after undergoing a novel approach to treatment.

Watch: Breakthrough in the fight against glioblastoma

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Richard Casper was one of the study participants. The Arizona man enrolled in the clinical trial at Mayo Clinic in Phoenix after his diagnosis of glioblastoma in 2019. Richard was given only months to live, but his family says thanks to his strength, perseverance, and innovative medical care, he survived nearly double the amount of time.

"To be almost two and a half, three years in after being told you only have a few months, it's quite remarkable," says Susan Casper, Richard's daughter.

Richard succumbed to the disease in 2023. During the treatment, his family says he had little to no side effects. In the months before his passing, Richard stated, "I feel great. If someone didn't tell me I have the glioblastoma, I wouldn't even know it."

The clinical trial was led by Dr. Sujay Vora, a radiation oncologist at Mayo Clinic in Arizona. The small, single-arm study incorporated the use of advanced imaging technology combined with cutting-edge radiation therapy in patients over the age of 65 with newly diagnosed World Health Organization (WHO) grade 4 malignant glioblastoma.

"The patients lived longer than we expected. This patient population is expected to live six to nine months. Our average survival was 13.1 months. There were some patients that were out closer to two years. The results exceeded our expectations. We are very pleased," says Dr. Vora.

The study is published in The Lancet Oncology.

Why is glioblastoma so deadly?

Glioblastoma is among the most challenging cancers to treat. The disease is aggressive and invades healthy brain tissue with hairlike tentacles. "That is why doing a complete surgery is very difficult, as compared to say breast cancer, where a lumpectomy can be performed to remove not only the tumor, but a healthy rim of tissue around it," explains Dr. Vora.

Surgery for glioblastoma presents a different set of obstacles. "When it comes to glioblastoma, it is challenging to do that level of surgery. You try to surgically remove whatever you can safely without leaving the patient worse off after surgery."

Another factor that makes glioblastoma so lethal is that it can be fast- growing and unresponsive to treatment.

"These cancer cells are quite challenging to overcome," says Dr. Vora. "There are some patients we see after their surgery, and by the time we are ready to start their treatment, they've already had a recurrence of the disease."

An estimated 14,500 people will be diagnosed with glioblastoma in the U.S this year. "In the best of circumstances the average survival rates are in the 14-15 month range. But for patients 65 and older, the group that was the focus of our study, patients do even worse. The prognosis for this population is between six and nine months," says Dr. Vora.

Symptoms of glioblastoma

• Headache
• Nausea and vomiting
• Confusion or decline in brain function
• Memory loss
• Personality changes
• Vision changes
• Speech difficulties
• Trouble with balance
• Muscle weakness
• Seizures

Attacking glioblastoma with a triad

For the clinical trial, Dr. Vora and his team mapped out a plan that would allow them to be more intentional and precise with treating the location of the glioblastoma.

The imaging incorporated the use of ¹⁸F-DOPA PET and contrast-enhanced MRI. "¹⁸F-DOPA PET is an amino acid tracer that can cross the blood brain barrier, and it can accumulate within the glioblastoma cells itself," says Dr. Vora.

Researchers combined these images to determine the location of the most metabolically active "hot spots" of the cancer in the brain.

Taking aim with proton beam therapy

Study investigators used one of the most advanced forms of radiation treatment, called proton beam therapy.

"With standard radiation, the beams go through the brain tissue, so there's an entrance dose and the exit dose. But with proton beam therapy, we dial up how deeply we want the radiation to go," explains Dr. Vora. "It drops off its energy in the tumor, and then there's basically no radiation after that. It allows us to be more preferential into the delivery of radiation and protect more of the healthy surrounding tissue."

During proton beam therapy, a patient lies on a table while the machine rotates around the patient's head targeting the tumor with an invisible beam. The patient is awake for the procedure. It is painless with many patients reporting fewer to no side effects.

Unlike traditional radiation for glioblastoma, which is typically delivered over the course of three to six weeks, treatment with proton beam therapy for the study was conducted in one to two weeks.

"I am hopeful that this is the first step of many where we can continue to move the needle and allow patients to live longer and live well," says Dr. Vora. "The goal is to improve the outcomes for our patients allowing them to spend more time with their families."

Nadya's story

2022 was a tough year for Nadya El-Afandi. She was on the verge of celebrating a long but successful battle with breast cancer.

"Out of the blue, I had a seizure. I went to the hospital, they did an MRI. After additional tests they told me the news: 'You have a glioblastoma,'" recalls Nadya. She asked her doctor if she should continue her breast cancer treatment. "He said, 'No'-meaning the glioblastoma would kill me before the breast cancer."

Nadya was not about to give up.

Nadya is a wife and mother of four children. She lives just outside of Rochester, Minnesota. "My children said to me, 'Mom, you're a unicorn. Of course you'll live.' My mother has had a number of medical conditions and we never expected her to live this long. And she's still alive and with us," says Nadya. "My children have also said, 'You've got grandma's blood in you. You will live.'"

Nadya is receiving care at Mayo Clinic in Rochester. That's where she learned about a new clinical trial called SAGA, or stereotactic ablative radiation treatment for glioblastoma. The phase 2 clinical trial is building upon Dr. Vora's research and studying a larger group of patients. The study is being led by Dr. William Breen, radiation oncologist at Mayo Clinic in Rochester.

It has been 15 months since Nadya began treatment for glioblastoma. So far, there is no sign the glioblastoma has returned. "Nadya has already exceeded the time that's expected time to have a tumor recurrence, and she continues to do well," says Dr. Breen. "Nadya is beyond some measures of what the average, overall survival time would be."

While Nadya's progress in encouraging, Dr. Breen says it is important to note that it is too early to draw any conclusions about safety or efficacy of this approach to treatment until the study is completed.

Meanwhile, Nadya is focused on living her life to the fullest. Fifteen months after undergoing treatment, Nadya embarked on an adventure to Hawaii, where she spent time taking helicopter tours, snorkeling and hiking.

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• Cancer is tough. Evelyn Owens is tougher
• https://cancerblog.mayoclinic.org/2021/12/21/glioblastoma-in-older-adults-improving-survival-and-quality-of-life/
• https://cancerblog.mayoclinic.org/2024/05/15/technology-clinical-trials-offer-hope-after-glioma-diagnosis/

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Study shows advanced imaging, expert review improve diagnosis of encephaloceles

The sound of a basketball bouncing, the squeak of shoes on a fast break, the swish of the net — basketball has been a constant for Parker Shanks — from youth leagues to high school and college teams, to pickup games at his local gym.

One day on the court in 2022, a seizure dropped 6-foot-8-inch Parker to the floor.

Watch: Back to basketball after surgery

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"The next thing I know, I'm lying down in the middle of the basketball court, and there's a stretcher coming to pick me up and (they) drive me to the ER," recalls Parker, now 24. "That's when it really hits that, no, we're not just done and out of this. Something really is going on."

That something turned out to be a skull abnormality called an encephalocele (en-SEFF-ah-loh-seal), which caused Parker to have seizures.

Today, three years after his journey with epilepsy started, Parker's seizures are in control, and he's enjoying new responsibilities at his job and shooting hoops again.

If sharing his experience could help someone else find answers, Parker is all in, especially as he's learned that encephaloceles are becoming more recognized as a cause of seizures. "If talking about this can help someone else, absolutely, without question," Parker says.

Re-review of imaging finds encephaloceles that cause seizures

There are distinct types and severities of encephaloceles. Some are present at birth and can be large. One in every 10,500 babies is born with this type of rare, large encephalocele, according to the Centers for Disease Control and Prevention (CDC).

Other encephaloceles, like Parker's, occur after birth when the bony plates of the skull do not fuse together completely during growth, explains Dr. Jeffrey Britton, a Mayo Clinic neurologist. This allows part of the brain to push through small gaps in the skull, producing an encephalocele. These small encephaloceles are typically under a half-inch in size. As a result, they are difficult to detect on MRI scans.

"Their relevance as a seizure cause has been increasingly appreciated in recent years," Dr. Britton says. "The ability to visualize them has increased with technological advances, and our ability to recognize them as clinicians and radiologists is improving."

In a retrospective study analyzing encephalocele cases in patients with epilepsy who underwent surgery from 2008 to 2020, Mayo Clinic researchers reported that the encephaloceles were initially overlooked on MRI in 31 of 34, or 91%, of cases. Expert re-review of patients' imaging as part of Mayo Clinic's weekly multidisciplinary epilepsy surgery conference has significantly improved identification of encephaloceles, says Dr. Kelsey Smith, a Mayo Clinic neurologist and first author of the study published November 2023 in Epilepsy & Behavior.

Drs. Smith and Britton are part of the integrated team of Mayo Clinic neurologists, neuroradiologists, neuropsychologists and neurosurgeons that meets weekly to discuss patient cases and recommend individualized, innovative treatment plans. They review patients' medical histories and look for brain image irregularities that may indicate an encephalocele.

"When you have someone with drug-resistant epilepsy, if you can find a lesion that's the cause of their epilepsy, it really changes the possibilities for the patient's treatment," Dr. Smith says. "That is why looking at imaging closely for abnormalities like encephaloceles is very important."

Since the Mayo study ended in 2020, the team has found roughly 20 encephaloceles in additional patients with epilepsy, Parker among them. Parker has a scar — shaped like a question mark over his left temple — to prove it.

Seizures triggered by sudden change in brain physiology

In May 2021, Parker was a 21-year-old junior at the University of Wisconsin-Stout in Menomonie when he first had a seizure. "I'm hanging out with a buddy, and suddenly he tells me he called an ambulance. He said, 'Dude, you just had a seizure,'" Parker recalls.

With no prior history of seizures, medication might not be started after one seizure. But a month later, Parker had a second. He underwent testing at Mayo Clinic Health System in Eau Claire, Wisconsin, and was prescribed anti-seizure medication.

For over a year, Parker was seizure-free. But after his seizure that day on the basketball court, epilepsy began to rule Parker's life. Following standard treatment, Parker's medication dosage was increased, and another medication was tried. His seizures would be under control and then return.

"It got to a scarily regular basis, where I was having the grand mal seizures about monthly, and then I was having the focal 'zone out' seizures at least weekly," says Parker, despite taking medication diligently.

Dr. Britton describes epilepsy as a temporary electrical short circuit or an electrical storm in the brain. "The one thing that different types of seizures have in common is that they result from a sudden surge in the excitability of the brain," he says.

Seizures create 'shadow in the back of my head'

Epilepsy is common. Worldwide, it's estimated more than 50 million people of all ages have epilepsy, according to the World Health Organization. In the U.S., more than 3 million people have epilepsy, according to the CDC. For a third of them, like Parker, medications don't control their seizures.

Dangerous complications can result from seizures — falling, drowning, motor vehicle accidents, dealing with side effects of medications and the mental stress of illness, and even sudden, unexpected death.

Parker fell and hit his head several times during seizures. A woman discovered him on the sidewalk near his office. She called 911 and his parents, thanks to an identification bracelet Parker wears.

Once, after being seizure-free for a few months, Parker crashed his car during a seizure. He shudders to think what would have happened if anyone had been seriously hurt in the accident.

Parker stopped driving. He curtailed his social activities. At work in Eau Claire, he was glad for a desk job — on carpeting — in case he fell.

"I'm not going outside and doing anything else because I just have that shadow in the back of my head," says Parker, offering thanks to his family and friends who gave him rides and support during some frustrating and frightening months.

Finding the culprit behind Parker's seizures

Parker was hospitalized in Eau Claire to monitor his seizures using an electroencephalogram (EEG), a test that measures electrical activity in the brain using small, metal electrode discs attached to the scalp. Parker's seizures were found to arise from his temporal lobe on the left side of his brain.

At Mayo Clinic in Rochester, Minnesota, that EEG information and Parker's medical history suggested the temporal lobe was the source of his seizures. Identifying the underlying encephalocele involved the use of advanced imaging:

• Fluorodeoxyglucose positron emission tomography (FDG-PET) scan, which indicates how glucose is fueling parts of the brain. Parker's scan showed a specific area of abnormal glucose uptake in the front tip of the left temporal lobe.
• 3D-rendering CT scan, which can enhance visualization of the skull base. Parker's scan revealed a defect in the floor of the left middle of the skull base and the corresponding encephalocele.
• 7T MRI scan, which can reveal subtle brain differences, and is used when the team is highly suspicious that a lesion is present but conventional imaging has not helped.

"The location of Parker's encephalocele had complex, curved anatomy with brain, bone and air close together," says Dr. Karl Krecke, a Mayo Clinic neuroradiologist, describing Parker's roughly half-inch encephalocele.

"When each of these imaging data pieces line up, we feel confident that we have found the culprit, and we can consider options to treat the patient's problem."

Seizure surgery date is 'my new birthday'

Dr. Britton delivered the news to Parker and his parents that an encephalocele likely was causing his seizures, and surgical repair was an option. "It's really a privilege to be in a position where you can be a part of a process that brings clear benefits to an individual patient," Dr. Britton says. "It's what keeps you going."

Dr. Jamie Van Gompel, a Mayo Clinic neurosurgeon, soon met with Parker and his family to discuss the risks and benefits of surgery. Research by the Mayo team has shown that a more limited surgery is best for a temporal encephalocele on the left side of the brain, which controls speech and memory.

"We went to surgery and were able to remove a small part of the brain tissue that was hurt by the encephalocele," Dr. Van Gompel says. "Parker was amazing, out of the hospital quickly and back to doing what makes Parker, Parker."

After dealing with fear and anxiety caused by his seizures, Parker had a special message for his operating room team before he went under anesthesia for his October 2023 surgery. As he lay on the operating table, he asked to make an announcement before his procedure started.

"Me and my family have gone through the greatest amount of trauma and stress for something that was out of nowhere," Parker recalls telling the team. "And knowing that you guys are the best possibility for me to get my life back, I'm seeing this as my new birthday. So, thank you."

After a recent checkup with Dr. Britton, Parker reiterates the sentiment. "I can't thank them enough. I don't know how else to put it. I've got my life back."

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• Sharing Mayo Clinic: From 100-plus seizures a month to seizure-free

The post Back to basketball after seizure surgery appeared first on Mayo Clinic News Network.

What started as a persistent headache for Spencer Lodin soon devolved into slowed speech, seizures, and hallucinations, symptoms which stumped ER doctors into thinking he had meningitis or was suffering from psychosis. Finally, specialized testing at Mayo Clinic identified Spencer's condition as GFAP-IgG associated autoimmune encephalitis, which allowed for targeted treatment and a full recovery.  

It was April 2020, the COVID-19 pandemic in full swing, when Spencer Lodin, 37, a mail carrier from the Twin Cities, experienced a persistent headache, which soon devolved into numbness on his left side, slowed speech, seizures, and hallucinations. After a series of ER visits and subsequent hospitalizations, Spencer's doctors began to suspect encephalitis — inflammation of the brain for which there can be various causes. Specialized testing at Mayo Clinic revealed he had GFAP-IgG associated autoimmune encephalitis. Once this rarer antibody was identified, Spencer could begin more targeted treatment, and the long road to healing.

When Spencer first complained about his headache to his primary care physician, the doctor told him to switch from ibuprofen to Tylenol. It didn't help. Then he started losing sensation on one side of his body.

"My brother-in-law, a doctor, was concerned I wasn't getting better and suggested I go to the ER," says Spencer, who is the youngest of five. "I went to the ER at the University of Minnesota Health Center. They gave me a CAT scan that came back with nothing abnormal. So, they discharged me and said I was fine."                                  

But Spencer wasn't fine. Two days later he was back in the ER. The numbness on his left side had gotten worse, and his headache was still raging. An MRI found inflammation in his brain. Spencer then underwent a spinal tap. His initial diagnosis was meningitis, and he was checked into the hospital. "They put a PICC line in me and then released me after three days with a schedule of drugs," Spencer recalls. "My sister said that when I got home that day, my speech had really slowed down and I wasn't sounding like myself."

Spencer's initial misdiagnosis of meningitis isn't uncommon, according to Andrew McKeon, M.B., B.Ch., M.D., a neurologist and director of the Neuroimmunology Laboratory at Mayo Clinic. "Once the inflammation gets into the brain you can get signs of conditions like viral or bacterial meningitis, because the initial presentation is not very specific," says Dr. McKeon, who treated Spencer once he came to Mayo.  

Walking in circles

A couple of days later, Spencer was at home on a Friday night hanging out with a friend when, at one point, his friend noticed him walking around in circles. "And they were like, 'Are you OK?'" Spencer says. "I apparently told them I was trying to walk off the pain of the headache." An ambulance was called, and Spencer was taken back to the ER. But he ended up at a psychiatric hospital. He was examined more for psychosis rather than for his other symptoms.

"WHEN SPENCER WAS SEEN IN THAT STATE OF MENTAL AGITATION, ONE MIGHT THINK OF AN EARLY PSYCHOSIS," DR. MCKEON SAYS. "BUT WHEN YOU ADD THE HEADACHE, AND NUMBNESS DOWN ONE SIDE, AND SLOWED SPEECH, IT BEGINS TO INDICATE ENCEPHALITIS."

Spencer was discharged that same night. He tried to call for a ride but was too disoriented to complete a simple phone call. He somehow made it home, barefoot, after an hour's walk. Spencer continues, "When I woke up in the morning the left side of my body had gone numb again," he says. "So, I went downstairs to the person who lives below me and asked them to call an ambulance. The ambulance brought me to the hospital. And that is the last thing I remember for a month."

After a host of additional tests, doctors at the University of Minnesota suspected Spencer had encephalitis. But they needed to confirm the particular antibody causing the inflammation of his brain. A sample of Spencer's cerebral spinal fluid was sent to Mayo Clinic Laboratories for testing. The results would take two weeks because such testing is extensive.

"OUR APPROACH IS, IF THE PATIENT HAS ENCEPHALITIS, WE SHOULD INCLUDE IN OUR TEST EVALUATION EVERY ANTIBODY THAT'S PERTINENT TO THAT DISEASE STATE," DR. MCKEON SAYS. "THE GFAP ANTIBODY WAS DISCOVERED AT MAYO, AND AS SOON AS WE VALIDATED IT CLINICALLY, WE INCLUDED IT IN OUR EVALUATION FOR AUTOIMMUNE ENCEPHALITIS. AND THAT'S WHAT CAME BACK AS POSITIVE IN SPENCER'S CASE."

Mayo Clinic is the only hospital in the country that offers testing for GFAP-IgG. Shannon Hinson, Ph.D., principal developer in Mayo's Neuroimmunology Laboratory, developed and validated the test.

"GFAP-IgG was first identified by its unique staining pattern of mouse brain tissue," Dr. Hinson says. "Once we realized it was a unique staining pattern, and a group of patients all had similar clinical symptoms, we worked on discovering what the pattern was. After we identified it as GFAP, we developed a test for it." The test takes time because, as Dr. Hinson adds, "It's homegrown within the lab, meaning we don't buy the test. We grow the cells and plate the cells here." There are different types of encephalitis, which can be caused by a viral infection, an insect bite, or an autoimmune reaction as in Spencer's case.

"THAT'S WHY THIS TEST IS SO VALUABLE, BECAUSE IT HELPS NARROW DOWN THE TYPE OF ENCEPHALITIS," DR. HINSON SAYS. "AND IT HELPS GUIDE THE DOCTORS ON HOW TO TREAT THE PATIENT. PLUS IT GIVES THE PATIENT AN ANSWER. IT PROVIDES COMFORT TO THE PATIENT TO KNOW, ‘THIS IS WHAT I HAVE.'"

Losing hold of reality

While waiting for his test results in the hospital, Spencer's condition deteriorated into an agitated, incoherent state. "I think what was happening is that my brain wasn't able to see reality, and I was having visions in my head. I was physically reacting to what was happening inside my head," he says.

Spencer had to be strapped to his bed, and decisions about his care were left to his oldest sister, Kari. His doctors by now strongly suspected autoimmune encephalitis and discussed a treatment option called plasma exchange. This would mean putting an IV line into Spencer's jugular vein. "Plasma exchange is typically done to remove autoantibodies," Dr. Hinson says. "It's an immune treatment, in which they take out the immunoglobulin and then put your plasma back in again."

But doctors worried that, even though strapped down, Spencer might still find a way to rip the IV from his jugular, which could kill him. So they held off and instead gave him calming meds. Days later, when Spencer's test came back positive for GFAP-IgG, he was calm enough to begin the plasma exchange.

"IT WAS A 10-DAY TREATMENT — FIVE TREATMENTS EVERY OTHER DAY," SPENCER SAYS. "I'D SAY AFTER THE SECOND TREATMENT IS WHEN THE LIGHTS CAME BACK ON. I WAS BECOMING MORE MYSELF AGAIN AND WAS ABLE TO HAVE COMPLETE CONVERSATIONS."

Spencer spent six weeks in the hospital and lost 30 pounds. Before being released, he needed a few weeks of rehab. The encephalitis left him in a similar state as a stroke victim. He had to learn how to use his left side again, how to walk normally, tie his shoes, and zip up a sweater. Once he was discharged and back home, Mayo Clinic took over his aftercare.

"The University of Minnesota recommended I take steroids for a while, orally," Spencer says. "But Dr. McKeon wanted to change that up. To really nip the encephalitis in the bud, he thought it'd be better if I did steroids intravenously, once a week for a month. He ordered an MRI and a spinal tap to check on the inflammation. He wanted to do some EEGs to check on how my seizures were doing. I'd say by this point, I really wasn't having any seizures. So he was just doing a lot of testing right off the bat."

Dr. McKeon adds: "The initial care is pretty intense, but then it doesn't require a huge amount of follow-up — once every six months."

Spencer did have one slight relapse, which manifested as another persistent headache in January of 2022 and sent him back to an ER in the Twin Cities. An MRI detected inflammation in his brain again, so Spencer was admitted to the hospital. But this time, because his records indicated his positivity for GFAP-IgG, he was put on steroids right away, which nixed further complications. He was released after a few days. "When I was able to talk to Dr. McKeon about it, that's when he put me on a longer treatment plan, an IV dose of steroids then oral steroids, which I tapered off of, and he has me on an immunosuppressant," Spencer says.

Spencer's immunosuppressant is currently mycophenolate. "We have to be careful about figuring out a maintenance steroid plan and gradually de-escalating the dose over time," Dr. McKeon says. "Timing for treatment is important, and with a maintenance treatment, people should generally do well."

Today, Spencer has made a complete recovery and is back on his mail route. Being unable to work for a few months was not fun for him. "Driving is one of my favorite things to do," he says. "I just really take pride in it, and I love being behind the wheel. So I was very anxious to get back in the car. Once I got the clear to do that, and after not being able to do much, I was ready to get back into full-time work and be like myself again."

This article first appeared on the Mayo Clinic Laboratories blog.

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Bad back? It's why many people seek medical care. Nonoperative approaches such as physical therapy are typical, first-line treatments for back pain. But minimally invasive robotic spine surgery is improving recovery and long-term outcomes for some patients who need surgery.

James "Sonny" Rivera describes his lower back pain vividly: "A hot burning rod going down my leg" and "a lightning bolt hit me in my back."

While Sonny remembers having back pain since he was a teen, a 2021 ATV accident made his pain intolerable when he stood, walked a short distance or rolled over in bed. "I got very little sleep for probably two years," says Sonny, 59, of Fort Dodge, Iowa.

Professionally and personally, Sonny's life was on hold. He couldn't work. Favorite hobbies like running, fishing, golfing and coaching youth wrestling were out.

"Just spending time with my grandkids outside playing, I wasn't able to do that anymore," Sonny says. "I think that brought me down."

Watch: Gone fishing

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Spine surgery recommended

Through his employer, Sonny participated in a benefit that referred him to the Mayo Clinic Complex Care Program. The program offers patients with an abnormal MRI or a local healthcare professional's referral to receive an advanced spine review and care plan by Mayo spine experts.

Dr. Mohamad Bydon, a Mayo Clinic neurosurgeon and editor of "Back and Neck Health: Mayo Clinic Guide to Treating and Preventing Back and Neck Pain," first saw Sonny via a video appointment.

"It was really easy to talk to him," Sonny says. "He answered all my questions. I felt really comfortable."

After Sonny's review, it was recommended he travel to Mayo Clinic in Rochester, Minnesota, for further evaluation and potential surgery.

Dr. Bydon recommended minimally invasive, robotic spinal fusion surgery for Sonny's compressed nerves and spinal instability. Research has shown that the use of robotics can offer greater accuracy when placing surgical instruments and lowers rates of reoperations.

"What that means to the patient is improved recovery, lower blood loss, lower risk of transfusion — additionally, better long-term outcomes," says Dr. Bydon, the Charles B. and Ann L. Johnson Professor of Neurosurgery and an expert in complex spinal surgery and spinal oncology.

Discharged next day

Standard fusion surgery requires a four-day hospital stay. With the robotic, minimally invasive approach, Sonny was discharged a day after surgery.

"I was really surprised about the recovery," Sonny says. "I had no pain, and I was able to walk normally.

"Now I walk around, I don't have any problems. My wife notices that I'm in a better mood all the time. It was affecting me not only physically, but mentally. And now it's great. I feel great."

A photo of Sonny, fish in hand, showed Dr. Bydon how well his patient is progressing.

"One of the great privileges of practicing at Mayo Clinic is taking care of patients like that and being able to see them advance and go on with their lives," says Dr. Bydon.

While the surgery may be called minimally invasive, Sonny thanks Dr. Bydon and team for making a big impact on him. "It's made a huge difference in my life," Sonny says.

Read more on Sonny's experience with Mayo Clinic Complex Care Program.

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