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4 hours ago · Spinal Cord Stimulator Ends 17 Years of Chronic Pain

A snowmobile accident left Blake Sunde with limited use of his right arm and triggered severe, chronic pain that lasted for years. But two years ago, a new treatment option changed everything and restored the quality of life Blake had been missing for so long.

A snowmobile accident left Blake Sunde with limited use of his right arm and triggered severe, chronic pain that lasted for years. But two years ago, a new treatment option changed everything and restored the quality of life Blake had been missing for so long.




When Blake Sunde collided head-on with a snowmobile in 2003, he suffered a devastating injury. The network of nerves that sent signals from Blake’s spinal cord to his shoulder, arm and hand — known as the brachial plexus — was ripped apart.

When he was thrown from his vehicle,
Blake’s shoulder, head and neck were stretched in opposite directions.
“That put traction on the nerve roots, and several were pulled out of the
spinal cord, including those that control the hand,” says Allen
Bishop, M.D.
, a Mayo Clinic
orthopedic hand and microsurgery specialist who was part of Blake’s care team.

Doctors in the emergency department at the Fargo, North Dakota, hospital where Blake sought care referred him to the Brachial Plexus Clinic at Mayo Clinic in Rochester. After the accident, Blake, who was 20 years old, was unable to extend his right arm or his fingers. He also was in terrible pain and had to take two types of opioid medication to help him bear it.

“In cases
like Blake’s, the spinal cord
injury sends pain signals to the brain that are often chronic and, at times,
severe,” Dr. Bishop says.

Complex surgery

At Mayo Clinic, Blake’s care team, including Dr. Bishop, neurosurgeon Robert Spinner, M.D., and orthopedic surgeon Alex Shin, M.D., recommended a surgical procedure that was new at that time called a double free gracilis muscle transfer. The gracilis is a long muscle extending from the groin to the knee on the inside of the thigh.

“The double gracilis transfer is a complicated, two-stage surgery
for patients with complete loss of function in the upper extremity due to a
brachial plexus injury,” Dr. Shin says.
“In the first stage, the brachial plexus is explored.
If there are any usable nerve roots, they are grafted with nerves borrowed from
the legs to obtain shoulder function. This is followed by transferring or transplanting the gracilis
muscle from the opposite side leg.”

The gracilis muscle is attached
to the collar bone, and the end of the tendon is placed under the biceps tendon
and sewn into the finger flexors. Microsurgery is used to connect the artery,
vein and nerves. 

“Six weeks later,
before any function returns from the first surgery, the same side leg gracilis
is transferred to obtain wrist extension,” Dr. Shin explains. “During
this surgery, the chest wall is opened and the nerves between the ribs are used
to power the triceps and the gracilis muscle.”

After function starts
returning — typically nine to 12 months later — follow-up surgeries are
performed to improve function.

Unrelenting pain

After he recovered from the
surgeries, Blake’s right arm function was limited. But he continued to work on
his dad’s farm. Blake says the injury itself didn’t affect him that much. The continuous
pain, however, did.

“It
was burning, shooting pain. It would start below the shoulder and shoot through
my arm like something was driving a nail through it,” Blake says. “It
felt like someone was crushing my hand. The pain was so intense I could feel my
heart skip beats.”

After two years of taking prescribed
opioids, Blake ended up in his local hospital emergency department with
withdrawal symptoms and was weaned off the pain medications. The severe
pain continued to disrupt his life. At night, it kept him from sleeping, and Blake
had to rely on muscle relaxants to help him rest.

“It was burning, shooting pain. It would start below the shoulder and shoot through my arm like something was driving a nail through it.”

Blake Sunde

In 2010, Blake’s local physical medicine and rehabilitation doctors referred him to Matthew Pingree, M.D., a physician in Pain Medicine at Mayo Clinic. He suggested Blake try a spinal cord stimulator to see if that would relieve the chronic pain. Dr. Pingree placed the leads into Blake’s spinal canal along the back side of the spinal cord using a type of X-ray called fluoroscopy. But the stimulator didn’t ease his pain.

“In
spite of increasing the stimulation significantly, we were unable to stimulate
his injured arm,” Dr. Pingree says. With no other treatment options
available, Blake continued to live with the pain for another seven years.

Welcome relief

In
January 2018, Blake’s care team told him about a new type of stimulator that
looked promising. That spring, Blake did a trial of the HF-10 spinal cord
stimulator, which previously had not been used to relieve pain from his type of
injury.

“It’s
a high-frequency stimulator, which means you can deliver more energy without
the patient feeling it,” Dr. Pingree says. “Even though his nerve
roots were pulled away from his spinal cord, the HF-10 stimulator was able to
provide relief.”

It
was the solution Blake needed. “During the trial, my pain was reduced by
75%,” Blake says.

Blake
had a permanent HF-10 spine stimulator implanted in June 2018, and it’s made a
world of difference. “Since we implanted him, he’s been able to stop all
of his pain medications,” Dr. Pingree says. “He sleeps better, and he’s
a different person.”

“Waking up and knowing that I’m not going to be in pain all day has been amazing.”

Blake Sunde

Then,
in September 2019, Blake had the opportunity to take advantage of another
advance in technology. Surgeons updated Blake’s stimulator to a new model that
is 30% smaller and has a battery that only takes 20 minutes to charge. Blake, now
a father of two who owns an agricultural drainage
and heavy construction business, says his experiences at Mayo Clinic over the
years have been second to none.

“Dr.
Pingree has been great. He’s very honest and open, and has always been very
professional,” Blake says. “And the way Mayo schedules your
appointments and coordinates your lab work is seamless. When you have bloodwork
done, you don’t wait two weeks for your results. You have them in a matter of
hours.”

But
Blake is most grateful for the pain-free days he now enjoys, made possible by
the nerve stimulator he received at Mayo Clinic. “I had been living with
this pain for so long that I didn’t know what life was like without it,”
he says. “The benefits are hard to put into words. Waking up and knowing
that I’m not going to be in pain all day has been amazing.”


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3 days ago · After Facial Surgery, Tammy Says Goodbye to Years of Sleep Apnea

Before coming to Mayo Clinic, Tammy Olson had been told the severe obstructive sleep apnea she'd been living with for years was beyond treatment. After meeting Christopher Viozzi, M.D., D.D.S., a Mayo Clinic oral and maxillofacial surgeon, however, Tammy found the help she so desperately needed.

Before coming to Mayo Clinic, Tammy Olson had been told the severe obstructive sleep apnea she’d been living with for years was beyond treatment. After meeting Christopher Viozzi, M.D., D.D.S., a Mayo Clinic oral and maxillofacial surgeon, however, Tammy found the help she so desperately needed.




Tammy Olson was at the end of her rope physically and emotionally. Years of living with the worsening symptoms and effects of severe obstructive sleep apnea had taken their toll on her life, her family and her marriage.

To make matters worse, after failing to respond to continuous positive airway pressure, or CPAP, therapy and traditional sleep apnea surgical treatments, a local specialist was at a loss for what to do next. “After evaluating me and seeing just how bad things were, he said, ‘I’m sorry, but there’s nothing left we can do for you,’ and then just sent me back home,” Tammy says.

Tammy
knew the dark reality of what that dismissal meant for her. “My apnea was
so bad that I’d stop breathing for up to 30 seconds at a time,” she says. “I
knew my organs couldn’t go on living without oxygen for that long forever. Eventually,
over time, I knew this would likely kill me.”

That realization triggered mounting stress and anxiety for Tammy, and during a follow-up visit, she conveyed those fears to her primary care physician. Her physician’s response was compassionate and clear. “After telling her how upset I was about everything, she said: ‘Don’t worry. I’m going to send you to Mayo Clinic,'” Tammy recalls.

Cautiously pessimistic

While
grateful for the opportunity to get a second opinion, Tammy wasn’t immediately
optimistic. “When I was referred to Mayo Clinic, I wasn’t overly hopeful
based purely on everything I’d already been through and had been told by my
local care providers,” she says. “I was scared that doctors there
were just going to tell me the same thing: that nothing could be done to help
me.”

Tammy’s
husband, Mike, was equally dubious. “Before Tammy was referred to Mayo, we
were at the last crossroads of trying to figure out just how many more years of
life she had left and what to do with that time,” he says. “We went
to Mayo being very skeptical of any other medical professional being able to
help her.”

Despite the doubts, Tammy and Mike made the drive to Mayo Clinic in Rochester to meet with Christopher Viozzi, M.D., D.D.S., an oral and maxillofacial surgeon. Within 10 minutes of sitting down in his office, their outlook changed. “When I walked into Dr. Viozzi’s office for the first time, it was almost like he immediately became a part of our family,” Tammy says. “He made us feel so at ease right off the bat and told us, ‘We’re going to figure this out, and we’re going to do it together.'”

“When Dr. Viozzi told Tammy, ‘We can fix this for you,’ we both started bawling right there in his office. It was the first real hope we’d been given in a long, long time.”

Mike Olson

Their
physician-patient teamwork began with Dr. Viozzi ordering a series of imaging tests
to examine Tammy’s airway and see if there was an obstruction that was causing
her sleep apnea. After reviewing the images, Dr. Viozzi didn’t find an
obstruction, but he did see that Tammy’s airway and nasal passages were abnormally
narrow. As he continued studying Tammy’s imaging results, a surgical fix that Dr.
Viozzi had performed many times before came to mind.

“It
became pretty clear that we could help her with skeletal surgery to reshape her
facial bones and her head and neck structure that’s supporting her airway,”
Dr. Viozzi says. “That’s the surgery we proposed to do for her.”

Though
the surgery would be invasive and complex, Tammy and Mike wasted no time in agreeing
to it. “When Dr. Viozzi told Tammy, ‘We can fix this for you,’ we both
started bawling right there in his office,” Mike says. “It was the
first real hope we’d been given in a long, long time.”

Apnea erased

Before
their hope could turn into healing, however, would Dr. Viozzi and his surgical
team would need to surgically reshape and reposition Tammy’s facial structure.

“What
we’re doing during this kind of surgery is moving all the bones below the eye
sockets forward,” Dr. Viozzi says. “The surgery indirectly moves the
soft tissue forward by moving the bones forward. The midface bones are moved
forward, and that in turn pulls the soft palate and lateral sides of the throat
forward and opens up the airway at that level. The lower jaw and the chin are
then both brought forward, as well. That brings the tongue and the tongue base
and the larynx up and forward. “

It’s
a complicated, time-consuming procedure that’s conducted with extreme care and
precision. “It’s a big, big surgery,” Dr. Viozzi says. “The
facial bones are carefully sectioned away from the skull base area, slid
forward, and then held in place by small titanium plates and screws. Then over
the course of six to eight weeks, the body will come in and lay down new bone,
at which point the patient is healed.”

For
Tammy, while healing after surgery did take some time, the results were
apparent right away. “Once I had the surgery, there was some recovery, of
course, but I experienced immediate results,” she says. “And when I
went back to Mayo for a sleep study nine months after the surgery, my apnea was
gone. My sleep scores were back to normal. That was just so amazing after
everything I’d gone through before coming to Mayo Clinic.”

New peace of mind

As
her recovery continued, Tammy found herself back in Dr. Viozzi’s care at one
point when she experienced acute discomfort on the right side of her jaw. “I
sent him a message through Mayo’s
patient portal app
about six months after my surgery,
saying that something was going on with my bite and that it just didn’t feel
normal anymore,” Tammy says.

Dr.
Viozzi promptly scheduled another appointment for Tammy. During that
appointment, he ran several tests and discovered that the temporomandibular joint on the right side of
Tammy’s jaw had deteriorated. This development wasn’t a complete surprise.

“She
had symptoms of this going on prior to surgery, and those symptoms accelerated
after the surgery. So we then had to do a second fairly complicated operation,
which was a total joint replacement of her right temporomandibular
joint with a new ball-and-socket joint,” Dr. Viozzi says. “She’s
unfortunately had some problems with that, too, but we’ve kept chipping away at
it, and we’ve got it pretty close to where she needs it to be now.”

“How do you accurately repay someone for giving you your life back? Because that’s exactly what Dr. Viozzi and his team have done for me.”

Tammy Olson

Despite
the setback, Tammy and Mike say they’ll remain forever grateful to Dr. Viozzi
and everyone else at Mayo Clinic who’s had a hand in Tammy’s care. “How do
you accurately repay someone for giving you your life back?” Tammy says. “Because
that’s exactly what Dr. Viozzi and his team have done for me. I’m sleeping
normally again and back to doing everything I was doing before all of this
started. The way that Dr. Viozzi and his team cared for us and treated us was
something we’d never before experienced in the medical field. They provided
such peace of mind throughout our entire ordeal, which I think is an important
part of the healing process.”

The
improvement in her quality of life that Tammy now enjoys is just one example of
the significant effect Dr. Viozzi and his team often see after treating
patients for obstructive sleep apnea.

“Patients with severe obstructive sleep apnea by and large are seriously debilitated by this condition. The impact on their lives cannot be overstated,” Dr. Viozzi says. “We’ve had patients who couldn’t work in their chosen occupation because they were always tired, and it was just too risky, who could not return to work they enjoyed, and patients who could no longer drive because they would fall asleep at the wheel who bought new cars after their disease was addressed. Having a hand in that is very gratifying for our surgical team here at Mayo Clinic.”


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5 days ago · With Her Seizures in the Past, Keeley Faces a Promising Future

For years, Keeley Allen and her family lived in fear that a seizure would strike and render the teen helpless. Unresponsive to medication, the seizures were unusual and ambiguous. Worse than the unpredictability of the seizures was the uncertainty about how to make them stop. At Mayo Clinic, however, the family's concerns about Keeley's seizures finally were put to rest.
Photo courtesy of Sonya Schultz Photography

For years, Keeley Allen and her family lived in fear that a seizure would strike and render the teen helpless. Unresponsive to medication, the seizures were unusual and ambiguous. Worse than the unpredictability of the seizures was the uncertainty about how to make them stop. At Mayo Clinic, however, the family’s concerns about Keeley’s seizures finally were put to rest.




Like most new drivers, Keeley Allen was elated when she got her license. But for Keeley, getting a driver’s license signified more than it does for many teens. It marked a new phase in her life — one where she’s no longer at risk for epileptic seizures.

In October 2018, after years of searching for effective treatment for seizures that didn’t respond to medication, Keeley underwent a specialized brain surgery at Mayo Clinic that targeted the area in her brain triggering the events. Since then, Keeley, who lives with her family in Aurora, Nebraska, has been seizure-free and leading a typical teenage life.

“We
went around the table at Thanksgiving and talked about the things we’re
thankful for, and Keeley said freedom and independence,” says Keeley’s mom,
Suzanne. “We’re finally seeing her do things that most teenagers are
doing. To see her tackle those things and not have the constant fear of when
she’ll have the next seizure — it’s been amazing to see how her life and perspective
have changed.”

The change in Keeley was made possible through the dedication of epilepsy specialists in Mayo Clinic’s Department of Neurology. Careful monitoring allowed Keeley’s team, which is headed by Lily Wong-Kisiel, M.D., to provide treatment tailored to the teen’s condition.

“We’d never seen so much care taken with Keeley,” Suzanne says. “Because of our location, there just aren’t the resources available that Mayo Clinic has. I’m not sure we’d be in a position to say we were a year seizure-free if it hadn’t been for them.”

Long road to a medical home

Keeley’s path to Mayo Clinic spanned several years and states. After her first seizure at age 10 in her fifth grade classroom, she received care from a neurologist in Omaha, Nebraska. That neurologist diagnosed Keeley with confusional migraines — a rare kind of migraine that can cause headache, memory loss, blurred vision, speech impairment, agitation and anxiety.

Although Keeley’s episodes involved some of those symptoms, the medication she was prescribed for the migraines didn’t work. “Things kept getting worse,” Suzanne says. “These episodes — we didn’t know what to call them. They weren’t grand mal-type events. A lot of times, she would stare off into space, and her right side would get real stiff and rigid. She would scream, and it was like she was super stiff and just not with it.”

Keeley
never remembered the events, but she recalls that each of them was preceded by
double vision. “The best way to describe it is when you cross your eyes. That’s
the sort of double vision I had,” Keeley explains.

“I just kept longing and hoping we could get to somewhere that could help us navigate through this journey.”

Suzanne Allen

As Keeley’s seizure activity escalated and the time between them decreased, the family sought a second opinion with another neurologist in Omaha. He diagnosed Keeley with epilepsy. “No one wants to hear their child has to deal with something like that, but it was a huge relief,” Suzanne says. “We had a name for it.”

When
that neurologist unexpectedly resigned, the Allens sought care for Keeley from a
neurologist in Iowa City, Iowa, but it wasn’t a good fit. “There wasn’t a
lot of follow-up,” Suzanne says. “When you’re in the throes of
consistent seizure activity, all you want is to be able to talk to someone. I
just kept longing and hoping we could get to somewhere that could help us
navigate through this journey.”

That
place turned out to be Mayo Clinic, where the Allens went at the urging of Keeley’s
hometown pediatrician. “I wrote a letter to Mayo that was basically me
pleading, saying: ‘I don’t know what to do anymore. Would you please see her?'”
Suzanne says.

Mayo responded with an appointment itinerary for Keeley, and in April 2016, the family drove to Mayo Clinic in Rochester.

Brain mapping pinpoints unusual activity

The Allens knew immediately that Mayo Clinic was the medical home they’d been seeking. “The first time we went there, we were met in the waiting room by three doctors who said they were part of Keeley’s team,” says Keeley’s dad, John. “That initial feeling is like: ‘Holy cow. They are serious about what they are doing there.’ After that, it didn’t go anywhere but up.”

Among
the first doctors Keeley met was Dr. Wong-Kisiel, who recognized Keeley’s case
was not cut and dry. “Her seizures had been thought to be psychogenic or
nonepileptic because she was having these intense screaming components and some
convulsions,” Dr. Wong-Kisiel says. “It was quite challenging to see
if it was behavioral or all seizure. But with careful evaluation, we were able
to show the events — which might look suspicious to be mimickers of seizures — were
in fact seizures coming from the parietal region.”

The brain’s parietal lobe is responsible for processing sensory information, such as warmth and pain. It’s not usually an area associated with seizure activity. Keeley’s parietal lobe, however, had been damaged before she was born by trauma she suffered in utero that resulted in a hemorrhage.

To better understand the origin of Keeley’s seizure activity, in late June 2018, she underwent a brain mapping procedure called stereoelectroencephalography, or stereo EEG, which was performed by Mayo neurosurgeon Jamie Van Gompel, M.D. During the procedure, several electrodes were implanted into Keeley’s brain. After that, when a seizure struck, the electrodes would record the activity. To increase the chance of a seizure, so it could be recorded, Keeley’s care team had her stop taking all anti-seizure medication.

“You
think they’re going to pull her off the medication, and it’s going to be quick
because she had a seizure every other day while on the medication,”
Suzanne says. “We get there and take her off the medication, and then we
sat and waited.”

Waiting
for a seizure to strike can be difficult for patients who undergo stereoelectroencephalography
because they are tethered to machines. But the nurses who watched over Keeley
made the wait — all 28 days of it — bearable. “We developed some really great
relationships with the nurses while we were there,” John says.

Laser surgery preserves function

When
Keeley finally had a seizure, the electrodes generated data that created a
detailed image of her brain. That information helped her team of neurologists,
neuroradiologists and neurosurgeons assess how vital pathways in the brain lined
up with the seizure focus — the region in the brain where the abnormal activity
originated. From there, they could create a treatment plan that would minimize
damage to Keeley’s vision and language function, Dr. Wong-Kisiel says.

“Keeley’s
is a case I keep in mind because she was not thought to be a surgical candidate
when she was first discussed at the (surgical) conference,” Dr.
Wong-Kisiel says. “But we regrouped and thought more about it.”

Ultimately,
members of the surgical conference agreed that the best option for Keeley would
be laser ablation, a minimally invasive approach that would preserve Keeley’s
speech and vision, while disrupting the network of abnormal electrical signals
that was triggering her seizures. Dr. Van Gompel performed the laser ablation
in October 2018. During the procedure, Dr. Van Gompel drilled a single
1-millimeter hole into Keeley’s skull and inserted a laser fiber into the
seizure focus.

“What is really cool about Keeley’s surgery is we effectively did her whole treatment without ever really making a true incision.”

Jamie Van Gompel, M.D.

Because
Keeley’s seizure focus was in an atypical area, her team was somewhat
apprehensive that treating the tissue not by removing it but by injuring the
healthy brain over it could cause unanticipated problems. However, since Keeley’s
treatment was performed using lasers, without needing to remove the skull, the
misbehaving tissue was treated with low risk to Keeley.

“What is really cool about Keeley’s surgery is we effectively did her whole treatment without ever really making a true incision,” Dr. Van Gompel says. “The monitoring and treatment were all done with less than 2-millimeter incisions, which sped recovery, virtually eliminated pain and reduced complications.”

Following
the procedure, Keeley was moved to her hospital room, which her dad had
arranged for a lengthy stay. But that evening as Keeley’s team examined her,
the family got some stunning news. “They said: ‘We’ll check her out
tomorrow. If everything looks OK, we’ll send her home,'” John recalls. “When
they said that, it was like my jaw was on the floor. But Keeley was doing
great.” The following day, Keeley was discharged from the hospital, and
the family returned home.

Living fearlessly with gratitude

Since
surgery, Keeley has been seizure-free — a result of most of the tissue involved
in the seizures being treated. Because the section of Keeley’s brain where the seizures
originated involved areas that control critical brain function, a fraction of
the abnormal tissue had to be left behind after surgery. As a result, to
counter any potential abnormal activity, Keeley continues to take anti-seizure
medication.

“Our
emphasis and counsel to the family was that we were going to preserve function,”
Dr. Wong-Kisiel says. “We knew the seizure focus overlapped with language
function, so Dr. Van Gompel ablated as much as could safely be done to make
sure she could leave the operating room as a functioning teenager taking AP
(Advanced Placement) classes. That was a priority, and we were able to achieve
that.”

“We’re starting to see the life come back. She radiates a little bit more, and she stands a little bit taller.”

Suzanne Allen

Keeley, a high school senior planning to go to college in the fall, is relishing her renewed ability to actively take part in life. And her parents can see a marked difference in her. “She’s not napping during school. She’s not going to bed at eight,” Suzanne says. “We’re starting to see the life come back. She radiates a little bit more, and she stands a little bit taller.”

In
place of the fear that used to be a daily part of life, gratitude has grown — for
good health, a bright future and the people who made it all possible.

“When
we went back in October, Dr. Wong-Kisiel asked us if there was anything she
could do, and Keeley said, ‘I just want to say thank you to Dr. Van Gompel,'”
Suzanne says. “So Dr. Wong-Kisiel paged him, and Dr. Wong-Kisiel, Dr. Van
Gompel and Keeley all got on the phone. It was important to her to be able to
express that gratitude to those two people who were just so instrumental in
making this happen.”


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Mon, Jan 13 5:00am · New Hope for Regaining His Old Life After Being Paralyzed

Paralyzed from the neck down as a result of a surfing accident, Chris Barr thought life as he knew it was over. After enrolling in a regenerative medicine clinical trial at Mayo Clinic, however, he began to realize all was not lost.

Paralyzed from the neck down as a result of a surfing accident, Chris Barr thought life as he knew it was over. After enrolling in a regenerative medicine clinical trial at Mayo Clinic, however, he began to realize all was not lost.




Chris
Barr wanted to give up and give in. A surfing accident in California in 2017 had
left Chris with a broken neck in eight places. He was so distraught over being paralyzed
from the neck down as a result of his injuries, that the first thing he mouthed
to his wife, Debbie, through the intubation tube when she arrived at his
hospital bedside was a plea to take it all away.

“When
I got there, the first words he mouthed to me were, ‘Pull the plug,’ which was
so shocking,” Debbie says.

A
short time later, Chris’ friend Chet White — who’d been on the beach that day
and was the one to drag Chris’ body onto shore after his accident — walked into
the hospital room and offered Chris some hope. “He said: ‘There’s
technology, new developments every day. Why would you throw in the towel? You’ve
got nothing to lose,'” Chris recalls.

In fact, after discussing the details of a new phase I multidisciplinary clinical trial with Mohamad Bydon, M.D., a Mayo Clinic neurosurgeon, shortly after his injury, Chris learned that he had everything to gain. “We heard about the Mayo stem cell trial …” Chris says. “And at that point,” Debbie adds, “it was game on.”

The research is preliminary but exciting. Mesenchymal stem cells taken from the stomach fat of a patient with a spinal cord injury are given time to multiply in a cultured laboratory setting. Then they are injected into the patient’s lower back. The cells migrate to the site of the patient’s injury and help augment healing and any initial improvement in motor and sensory function the patient might have experienced after surgery.

“All of the progress stopped at six months. It flatlined. That’s when Dr. Bydon had us come out to Mayo.”

Chris Barr

“We want to intervene when the physical function has plateaued, so that we do not allow the intervention to take credit for early improvements that occur as part of the natural history with many spinal cord injuries,” says Dr. Bydon, who is the lead investigator of the phase 1 regenerative medicine trial at Mayo Clinic in Rochester.

For
Chris, that intervention came 11 months after his injury when the limited
improvement in his ability to move his arms and legs that had come after surgery
and months of intense physical therapy had bottomed out. “All of the
progress stopped at six months,” Chris says. “It flatlined. That’s
when Dr. Bydon had us come out to Mayo.”

At Mayo Clinic, Chris was enrolled as patient No. 1 in the 10-patient clinical trial that’s testing the safety, side effects and ideal dosage of stem cells to help treat severe spinal cord injuries. The treatment remains experimental, and it is not yet approved by the Food and Drug Administration for large-scale use.

While
early results show patient response varies greatly, for Chris the response was
both immediate and life-changing. “I could feel it,” he says of the
initial stem cell injection. “I absolutely felt something in my legs.”

Once
those injected stem cells went to work on his injured spine, it wasn’t long
before Chris began seeing improvement in his physical and occupational therapy
test scores, including his 10-meter walk test, ambulation test, grip and pinch
strength test, and manual dexterity tests. “Every single one of them
improved by 25% to 50% for my upper extremities and 100% for my lower
extremities,” Chris says. “Clearly, something happened.”

As
Chris’ participation in the trial continued, so did his improvement. “The
first time I started walking by myself, that was really something,” he
says. His response to the treatment wasn’t remarkable for Chris alone, but for
the team of researchers and care providers at Mayo Clinic who helped make it
happen, as well. “To be able to see him stand up and walk toward me was
really just an extraordinary feeling,” Dr. Bydon says. “I wanted all
of the investigators in this space to see that.”

“This trial will help us advance the field, so we can offer new treatments for patients with spinal cord injury.”

Mohamad Bydon, M.D.

The
team of investigators included Mayo Clinic’s Wenchun
Qu, M.D., Ph.D.
; Allan
Dietz, Ph.D.
; Sandy Goncalves; F.M. Moinuddin,
Ph.D.; Mohammed Ali Alvi, M.B.B.S.; Anshit Goyal, M.B.B.S.; Yagiz Yolcu,
M.D.; Christine Hunt, D.O.Kristin Garlanger, D.O.Ronald Reeves,
M.D.
Andre Terzic, M.D., Ph.D.;
and Anthony Windebank, M.D. 

While
Chris’ response to the trial’s stem cell treatment has been remarkable, Dr.
Bydon cautions that not all spinal cord injury patients will have the same
outcome. “Although some patients like Chris are super-responders, other
patients are moderate responders or nonresponders,” Dr. Bydon says. “But
this trial will help us advance the field, so we can offer new treatments for
patients with spinal cord injury.”

That’s
exactly what it’s done for Chris. “I can’t say it enough times that the
stem-cell regimen and protocol offers hope,” he says. “The
hopelessness of paralysis is just unlike anything you can imagine. And this is
the hope.”

Watch
this video to hear Chris and Dr. Bydon talk more about how that hope came to
life for him:


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Fri, Jan 10 5:00am · Expert Care, Teamwork Lead to Tailored Treatment for Alexa's Rare Cancer

Alexa Lofaro spent six months taking medications for a condition she didn't have. Once she arrived at Mayo Clinic, a multidisciplinary team specializing in her disease not only provided the right diagnosis, but also conducted the genetic testing necessary to find the right medication for her.

Alexa Lofaro spent six months taking medications for a condition she didn’t have. Once she arrived at Mayo Clinic, a multidisciplinary team specializing in her disease not only provided the right diagnosis, but also conducted the genetic testing necessary to find the right medication for her.




Only about 1,500 people in the world have been reported to have Erdheim-Chester disease. Twenty-eight-year-old Long Island, New York, attorney Alexa Lofaro is one of them.

Erdheim-Chester disease is one of several diseases known
as histiocytic disorders in which white blood cells called histiocytes multiply
and spread throughout the body, leading to organ damage. It was previously
thought to be an inflammatory disorder. But in 2016, the World Health
Organization classified the disease as a form of cancer.

“It’s a very slow cancer that is potentially
curable. People can live for many decades without treatment,” says W.
Oliver Tobin, M.B., B.Ch., B.A.O., Ph.D
., a
Mayo Clinic neurologist. “Because there are multiple mutations that cause
this disorder, there are many different ways to treat it.”

Before coming to Mayo Clinic in August 2019, Alexa already had been to several neurologists for care. A brain MRI showed she had multiple abnormal areas that were initially suspected to be the result of multiple sclerosis (MS). When Alexa was referred to another local neurologist who specialized in MS, however, she was diagnosed with a different disease called chronic lymphocytic inflammation with pontine perivascular enhancement responsive to steroids, or CLIPPERS.

This rare inflammatory disease of the central nervous system has symptoms similar to Erdheim-Chester, but it usually improves with steroid medication. Alexa started taking steroids to treat the inflammation. But after six months, her symptoms of double vision, loss of balance and changes in gait continued to worsen.

“By May 2019, I was alternating between somewhat dragging my left leg and swinging it
around from the hip,” Alexa says. “My speech started changing,
as well. It was garbled, and I sounded as though I had marbles in my mouth.”

An accurate diagnosis

Alexa’s mother, who is a nurse,
continued to search for answers and for doctors who had expertise in treating
her daughter’s rare condition, which had begun affecting Alexa’s ability to
work.

“I couldn’t go to court anymore because I was too unsteady to take public transportation,” Alexa says. “My mom said we were going to go to Mayo Clinic in Rochester to see Dr. Tobin, who had treated numerous cases of CLIPPERS and could tell us if my diagnosis was correct.”

During an appointment on Aug. 13,
2019, Dr. Tobin reviewed Alexa’s MRI images. “We had a good idea about what
she had the day she got here because she had the brain lesions which are
typical of Erdheim-Chester disease,”
Dr. Tobin says.

Alexa underwent further testing, including bloodwork, a spinal tap, an MRI of the spine and a comprehensive positron emission tomography (PET) scan. Three days later, Dr. Tobin called to say that, based on the PET scan, he believed Alexa had Erdheim-Chester disease.

“A standard PET scan is done
from the eyes to the mid-thigh,” Dr. Tobin says. “This disease
involves the knees and leg. So if you just scanned to the mid-thigh, you would
miss that her entire lower leg was abnormal.”

A team of experts

After he saw the results of her imaging, Dr. Tobin recommended Alexa undergo a biopsy of the involved areas of bone in her lower leg. That test would be overseen by a group of specialists familiar with the rare cancer Dr. Tobin suspected in Alexa.

“We have a multidisciplinary Histiocytosis
Working Group, coordinated by hematologist Ronald
Go, M.D.
We meet once a month and are in regular communication when we have
a patient like Alexa,” Dr. Tobin says. “There’s a particular way a
bone biopsy has to be performed when histiocytosis is suspected. Our histiocytosis radiologist, Jason
Young, M.D
., coordinated a high-tissue volume bone biopsy based on the PET
scan results. Histiocytosis pathologist Karen Rech, M.D., directed how to
correctly handle the bone biopsy to ensure that we not only reached a
diagnosis, but could identify the appropriate treatment.”

The bone biopsy confirmed Alexa had
Erdheim-Chester. Then genetic testing on the biopsied tissue revealed the
mutation that was causing Alexa’s disease. “Treatment depends on the
genetic mutation of the tissue,” Dr. Tobin says. “The genetic testing
we did allowed her treating neurooncologist in New York to identify which treatment
she would best respond to.”

“My doctor speaks with Dr. Tobin and discusses how I’m responding to the treatments. It feels comforting to have the team that diagnosed me also in the wings.”

Alexa Lofaro

In September 2019, Alexa began a
targeted therapy that’s used to treat melanoma. It’s an oral medication she
takes daily for 21 days. Then she takes a week off and begins another cycle. Alexa
currently is on her fourth treatment cycle.

“My doctor speaks with Dr.
Tobin and discusses how I’m responding to the treatments,” Alexa says. “It
feels comforting to have the team that diagnosed me also in the wings. Without
that diagnosis, I wouldn’t have a treatment to respond to.”

Alexa’s diagnosis was truly a group effort, according to Dr. Tobin. “She couldn’t have had this diagnosis within a week if not for our multidisciplinary Histiocytosis Working Group comprised of hematologists, radiologists, pathologists and multiple other specialties,” he says. “The combination of this multidisciplinary group and the research infrastructure provided by both the Center for Multiple Sclerosis and Autoimmune Neurology and the Lymphoma SPORE (Specialized Programs of Research Excellence) are critical for the accurate diagnosis of patients like Alexa, and for developing new cures for this and similar disorders.”

A marked improvement

Since beginning the medication, and
with help from a physical therapist, Alexa is able to speak more clearly, and
her balance and gait are improving. An MRI and PET scan in November 2019 showed
the lesions in her brain and leg have shrunk.

“I’m able to stand more
comfortably now,” she says. “Before the
treatment, I had gotten to the point where I could not walk without holding on
to someone for support and using a cane at the same time. Now I am able to walk
in my home without use a cane.”

As her treatment has moved forward,
Dr. Tobin has reached out to Alexa on several occasions to check her progress. “It
shows that he cares and is looking out for my interest,” Alexa says. “Mayo
is what medicine should be. It’s the height of medicine.”


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Wed, Jan 8 5:00am · Surgery for Chest Wall Deformity Restores Danielle's Active Life

When Danielle Goldsmith was told nothing could be done to reverse the effects of a chest wall deformity she'd had since birth, she took her health into her own hands by researching all her options. That research led Danielle to Mayo Clinic.

When Danielle Goldsmith was told nothing could be done to reverse the effects of a chest wall deformity she’d had since birth, she took her health into her own hands by researching all her options. That research led Danielle to Mayo Clinic.




For years, a common belief among some medical professionals was that pectus excavatum — a birth defect in which a person’s breastbone is sunken into his or her chest — was purely a matter of appearance. “As physicians, we were taught: ‘It’s cosmetic. You don’t need to worry about it,” says Dawn Jaroszewski, M.D., division chair of Thoracic Surgery at Mayo Clinic in Arizona. “There was a debate about whether pectus truly caused significant medical issues.”

When she started working at Mayo Clinic, Dr. Jaroszewski made it her mission to get to the bottom of that debate by specializing in pectus excavatum. “By working with our colleagues in Cardiology, we’ve been able to really look into exactly what happens with pectus and how it truly does affect patients,” she says. “We’ve published a lot of research that shows pectus excavatum is not just cosmetic. It is a big problem for patients, and it does affect their lives. Danielle’s a good example of that.”

“I was running 5 to 6 miles a day, and then all of sudden, I couldn’t run 1 mile. Then I couldn’t walk a mile. And then I couldn’t even walk up the stairs to my apartment.”

Danielle Goldsmith

“Danielle”
is Danielle Goldsmith. Though she’d been living with pectus excavatum since
birth, it didn’t begin negatively affecting her life until she was an adult. “I’d
danced my entire life,” she says. “I cheered in college and was even
a professional NFL cheerleader. I was running 5 to 6 miles a day, and then all of
sudden, I couldn’t run 1 mile. Then I couldn’t walk a mile. And then I couldn’t
even walk up the stairs to my apartment.”

At
that point, Danielle checked herself into a local hospital. There she was told
nothing could be done to fix her chest wall deformity. Danielle refused to
accept that. “I stayed there for about two weeks,” she says. “When
they sent me home with an oxygen tank and said, ‘This is going to be your life,’
that wasn’t an option for me.”

Dawn Jaroszewski, M.D., with Danielle Goldsmith
Dawn Jaroszewski, M.D., with Danielle Goldsmith

Instead,
Danielle and her mother returned home, turned on a computer and ran a search
for the number one surgeon for pectus in the world. Dr. Jaroszewski was the top
result. “She popped up, and we thought immediately, ‘We have to go to Dr.
J.,” Danielle says.

When
they did, Dr. Jaroszewski found in Danielle the telltale signs and symptoms of
pectus excavatum that she’d seen many times before. “Danielle described
very classic symptoms for pectus excavatum,” she says. “Patients feel
like they can’t get enough breath. When they exert themselves, they become
extremely short of breath. They get lightheaded. They feel dizzy.”

“Since my procedure, I’m doing better and feeling better than I ever thought I would be.”

Danielle Goldsmith

Fortunately,
there is a surgical fix for pectus excavatum. And it’s one that Dr. Jaroszewski
and her surgical team at Mayo Clinic have spent years perfecting. “The
procedure is basically putting braces on the chest,” she says. “We go
in with a camera and put steel bars behind the sternum. That helps hold the
chest out. Those steel bars stay in for three years. And when they’re taken
out, the chest will stay in that new position.”

Danielle’s
goal as she went into the surgery was straightforward. “I wanted my normal
way of life back,” she says. “That’s it.” Since Dr. Jaroszewski
operated on Danielle more than a year ago, Danielle says she’s reached that
goal. “I’m back to exercising, working out and running,” she says. “I
do feel like I’m living my normal life again. And I feel like I owe Dr. J. and
her team at Mayo Clinic the world for helping me do that. Since my procedure, I’m
doing better and feeling better than I ever thought I would be.”

Watch
this video to learn more about pectus excavatum and Danielle’s treatment
journey:


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Mon, Jan 6 5:00am · Back in Control After Successful Incontinence Treatment

For years, Roxann Neumann, kept spare clothes in her car and desk for the days when incontinence got the best of her. But after an innovative surgery that resets the nerve signals between the brain, bladder and bowel, Roxann's incontinence has improved immensely, and the extra clothing is back in her closet.

For years, Roxann Neumann, kept spare clothes in her car and desk for the days when incontinence got the best of her. But after an innovative surgery that resets the nerve signals between the brain, bladder and bowel, Roxann’s incontinence has improved immensely, and the extra clothing is back in her closet.




Roxann Neumann loves nothing more than holding and snuggling her eight little grandchildren. Until recently, however, Roxann was affected by urinary incontinence, and lifting the children triggered an extremely uncomfortable experience.

“Picking
up my 3-year-old granddaughter, I could completely soak a super absorbent pad
and go through to my underwear,” Roxann says.

Not only did Roxann have overactive bladder that caused her to routinely leak urine, she also struggled with irritable bowel syndrome and experienced bowel incontinence. Roxann combated the exasperating condition for years using traditional approaches. But lifestyle modification, medication and pelvic floor strengthening exercises did not stop her symptoms. “I was pretty much told this is the way it is,” Roxann says.

In summer 2019, however, Roxann saw a new primary care provider who offered a different perspective. A visit with Marvin Vaughan, M.D., at Mayo Family Clinic Northeast, opened a door that led Roxann in a new direction toward a permanent remedy for the incessant leaking. “(Dr. Vaughan) listened to my issues and asked me, ‘Has anyone sent you to urogynecology?'” Roxann says. “I said no, and he said, ‘Well, let’s do that,’ and that’s how I met Dr. Linder.”

Under the care of Brian Linder, M.D., a Mayo Clinic urologist and urogynecologic surgeon, Roxann learned about an innovative therapy for urine and bowel incontinence called sacral nerve stimulation. Sacral nerve stimulation, sometimes called sacral neuromodulation, targets the nerves that signal the brain that it’s time to release the bladder or bowel. The treatment can greatly diminish symptoms related to urgency leaking.

In
September 2019, Dr. Linder implanted a sacral neuromodulation device into
Roxann’s lower back during an outpatient procedure. Since then, Roxann’s life
has undergone a profound change.

“I
never dreamt it could be this way again. I was hoping for help with one or the
other (the bladder or the bowel issue). I didn’t imagine I would have both,”
Roxann says. “When the grandkids come over, they love for grandma to pick
them up and cuddle. I can do that now and not worry. And that’s such a comfort.”

Escalating symptoms

Roxann’s
symptoms of urinary incontinence started mildly years ago. Decades of horseback
riding and the delivery of six babies affected her pelvic floor muscles and her
ability to control elimination. “The last three years were the worst, but
I’ve been having issues for probably the last seven years,” she says. “When
we’d go out anywhere, my husband would always scope out to see where the ladies’
room was, so I could make a fast trip if I needed to.”

Eventually,
the leaking got so bad that Roxann began keeping spare clothes in her desk at
work and in her car. “I can’t tell you how many pairs of clothing I’ve had
to toss over the last several years,” she says.

Worse
than the inconvenience her condition presented during waking hours was the implications
that the frequent and urgent need to urinate had on her sleep. “I was
getting up every half hour to go to the bathroom, so I wasn’t getting any rest,”
Roxann says.

“Treatment with sacral neuromodulation is FDA-approved for both overactive bladder, as well as accidental bowel leakage. The idea is that it’s normalizing the control of bladder reflexes.”

Brian Linder, M.D.

Roxann took prescription medications designed to decrease the frequency of urination. They were helpful, but she still was using the bathroom every hour or so. Years of practicing pelvic floor exercises, called Kegel exercises, did not decrease her symptoms. At Dr. Linder’s recommendation, Roxann also tried a therapy that supplied external electrical stimulation to the pelvic floor, but that didn’t stop the leaks either.

When
the electric stimulation failed, Dr. Linder talked to Roxann about sacral nerve
stimulation. “Treatment with sacral neuromodulation is FDA-approved for
both overactive bladder, as well as accidental bowel leakage,” says Dr.
Linder, who has implanted approximately 25 such devices in patients at Mayo
Clinic in the past year. “The idea is that it’s normalizing the control of
bladder reflexes.”

In
people who have incontinence, there is a breakdown in the communication between
the brain and the sacral nerves. “The signals aren’t lining up how they’re
supposed to. Instead of the brain being able to say now is not the time to
void, the reflex that makes the bladder respond and then squeeze to empty fires
on its own,” Dr. Linder explains. “So sending a signal with sacral
nerve stimulation modulates how the body responds. It’s kind of like rebooting
the software.”

When
Dr. Linder told Roxann how sacral nerve stimulation works, and that it can effectively
treat bowel and bladder incontinence, Roxann says her ears perked up, and she
asked for more information. That evening, Roxann and her husband reviewed the
literature on sacral neuromodulation at home. “He looked at it, and I
looked at it, and we looked at each other and said, ‘This could be the answer,'”
Roxann recalls.

Long-term results

More and more, sacral neuromodulation is becoming the answer for many women, and some men, with bladder and bowel incontinence, Dr. Linder says, adding that, until recently, it wasn’t widely offered at Mayo Clinic. The treatment is not designed to treat stress incontinence, which is leaking associated with coughing or sneezing.

“To
have overactive bladder is very common. Many people start treatment with an oral
medicine, but they may not know there are treatments beyond oral medication if
they’re not having adequate symptom control,” Dr. Linder says. “The
overall proportion of women who go on to a therapy like this is relatively
small. But it’s important to know that this option and others are out there for
symptoms that cannot be otherwise controlled.”

From
Roxann’s perspective, having access to a physician who worked with her to find
an effective treatment made all the difference. “Dr. Linder really went
the extra mile in trying to find something that was going to work,” she
says. “He told me I could do all the electrical stimulation and all of the
Kegels I wanted, but it was never going to take care of the issues I had. It
was like: ‘Yes. Finally somebody finally understands.'”

“People have got to know there is help out there if you do have this problem. Dr. Linder made such a difference in my life, and I’m willing to let people know.”

Roxann Neumann

A
few weeks after learning about the treatment, Roxann underwent the first phase
of a two-part operation to implant the neurostimulator. During the first step, Dr.
Linder placed a wire with four electrical leads into Roxann’s lower back, near
the nerves that control the bladder and rectum. The wire exited her body and
attached to an external battery taped to her back.

Roxann
wore the external battery for about two weeks as a trial to test the
effectiveness of the device, which has seven program settings. “There are
four electrodes on the wire itself, so you can change the settings between
which of these four electrodes are getting stimulation,” Dr. Linder says.

When
Roxann woke up from the procedure, she was confident things would be different.
“Right from the start, I knew it was going to work,” she says. “When
I got off the cart coming from the procedure, I was able to walk to the
bathroom, and I didn’t leave a trail.”

Two
weeks after the first surgery, Dr. Linder performed the second part of the operation
and implanted a small battery into a pocket that he created under Roxann’s skin
in her lower back. Since undergoing the treatment, Roxann has a renewed vigor
for life and readily tells people about her remarkable transformation thanks to
the sacral nerve stimulation.

“Not
many people are willing to talk about it,” she says. “Who wants
people to know that they were incontinent of the bowel and bladder? But people
have got to know there is help out there if you do have this problem. Dr.
Linder made such a difference in my life, and I’m willing to let people know.”


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Fri, Jan 3 5:00am · A Welcome Dose of Furry Comfort

With her warm brown eyes, big floppy ears and calming presence, Luna, a trained facility dog, spends her days bringing cheer to Mayo patients.

With her warm brown eyes, big floppy ears and calming presence, Luna, a trained facility dog, spends her days bringing cheer to Mayo patients.




Receiving news of a medical diagnosis can be overwhelming and frightening. Spending a significant amount of time in and out of the hospital, meeting with physicians and receiving treatments may lead to feelings of disconnection from home. Therapy and facility dogs at Mayo Clinic Health System are ready to help. Their calming presence and friendly demeanor serve to ease stress and soothe jangled nerves.

Lunar III, or Luna for short, is one of those helpful canines. A Labrador retriever with light golden fur, warm brown eyes and big floppy ears, Luna is a facility dog who works at Mayo Clinic Health System in La Crosse Wisconsin. She also travels to clinics in Onalaska, Sparta and Tomah, Wisconsin.

There
are two levels of training dogs can complete to provide support for patients. They
can become either therapy dogs or facility dogs. Therapy dogs must pass testing
criteria to ensure that they can behave in various settings, and they often are
used for comfort visits with patients. Facility dogs complete a two-year
advanced training program and can respond to more than 40 commands. They are
consistently reliable in public settings, and can function in environments with
many distractions while still maintaining focus on their work.

“As soon as she walks in, it’s clear that both patients and staff are friends with Luna.”

Lisa Morgan

Luna
graduated as a facility dog from a specialized training program in Ohio. She
now performs a wide variety of jobs in her work at Mayo Clinic Health System.
Luna’s daily tasks range from carrying a basket of chocolates through the
hospital to providing comfort during treatments. She assists patients with
exercise, motivation, positive distraction, opening and closing drawers or
doors, retrieving items, and pulling pediatric patients on scooter boards.

Luna regularly visits patients in Cardiac Rehabilitation, along with her handler, Lisa Morgan, a supervisor in Rehabilitation Services. “As soon as she walks in, it’s clear that both patients and staff are friends with Luna,” Morgan says. “The smiles on patients’ faces show that they know their canine friend is there to help. Most people call her by name and ask me if they can pet her.”

While she’s in Cardiac Rehabilitation, Luna often spends time with patients receiving enhanced external counterpulsation, or EECP. The treatment is used for angina, a type of chest pain, and some people require EECP sessions multiple times a week for many weeks. The frequency and duration of the treatments can get lonely and tiresome. Luna helps ease negative emotions patients may be feeling by allowing them to pet and talk to her.

“Luna
is a great comfort to patients receiving EECP treatments,” Morgan says. “It
can be an uncomfortable process, and she provides much-needed distraction and
relief.”

“Whether patients and staff know Luna or have just met her for the first time, it’s obvious that she brings light to any room she enters.”

Lisa Morgan

Luna also visits the Cancer Center, where she always receives a warm welcome. “Patients in the Cancer Center may have just received upsetting news or may be receiving treatment, but Luna’s presence seems to improve their spirits,” Morgan says. “They smile when Luna places her head on their lap, and they share stories about the pets they have at home.”

Similar
to her time in Cardiac Rehabilitation, Luna provides soothing comfort and distraction
during medical treatment.

“Whether
patients and staff know Luna or have just met her for the first time, it’s
obvious that she brings light to any room she enters,” Morgan says. “She
knows how to make patients’ experiences at Mayo Clinic Health System even more
extraordinary.”

NOTE: A version of this
story previously was published in
Hometown
Health
.


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