April Spotlight: Neuroradiology and the fMRI exam

April is host to Neurodiagnostic Week, a time to honor and celebrate the contributions of our neurodiagnostic professionals.

Our Neuroradiology department is an integral part of the diagnostic evaluation process and collaborates with all OHSU clinical and medical teams including but not limited to neurosurgery, interventional neuroradiology, ENT surgery, orthopedic surgery, and vascular surgery.

One of the most advanced techniques we use is a functional magnetic resonance imaging (fMRI) exam. This exam is tailored to the location of the brain lesion, regions of clinical concern, and the normal brain adjacent to it.axial fmri and dti

The goal is to allow the neurosurgeon or clinician to plan the optimal, least invasive approach, and to allow the surgeon to more completely excise a mass or portion of the brain while preserving as much normal function as possible.

How it works:.

Functional MRI is based on changes in blood flow to regions of the brain associated with an activity.

For example, when you move your fingers, the neurons in your brain that tell your finger to move need more oxygenated blood and the body delivers more blood to these cells.

The MRI scanner can measure these very small changes in blood flow and display them on an image. The test is designed to evaluate different tasks such as tapping your fingers or reading/thinking of words.

These tasks allow the MRI to identify these critical areas of the brain cortex before surgery. To identify the “wiring of the brain” or the connections between the cortex and your extremities, we use a technique called diffusion tensor imaging (DTI).

3d dtiThis complex MRI sequence allows visualization of the white matter of the brain and shows where regions of the brain are connected.

The fMRI and DTI images are then incorporated together into the operating room so the neurosurgeon can navigate around these critical areas and perform the surgery without damaging these areas.

An fMRI is often indicated for presurgical planning for many conditions including but not limited to epilepsy and brain tumors.

fMRI allows a patient to better understand the potential risks of having surgery. Many studies have shown reduced morbidity and increased survival rates in patients who have had preoperative fMRI.

I started the current fMRI program in 2008 when I arrived at OHSU from Wake Forest University. In the beginning of the program, all the fMRI exams were audio based. Patients would have to listen to words being read to them while in the scanner.

While the fMRI was often successful, the MRI environment is quite loud so some patients had difficulty hearing the words. The potential of the technology was still demonstrated and many patients had great results.

OHSU realized the potential and made significant investments in hardware and software which allowed patients to see the fMRI data with a large MRI compatible LCD monitor.

Now patients will silently read words or follow instructions on the screen to move their fingers. The visual based fMRI system has allowed many more patients to benefit from the technology. In addition to the hardware upgrade, the new software allowed for seamless integration of the fMRI and DTI data into the surgical environment.

Over 300 patients have since been successfully scanned making OHSU one of the most active fMRI programs on the west coast.

What do our providers have to say about this technology?

“There is no doubt that fMRI has revolutionized our approach to patients with a number of brain conditions.

  1.  Notably, fMRI has allowed a much less invasive and specific evaluation of hemispheric dominance for language which in years past required cerebral arteriography and Wada testing.
  2.  fMRI brain mapping has now completely changed epilepsy surgery and tumor surgery such that the surgeon is now armed with knowledge of the discrete functional areas adjacent to tumors or epileptogenic foci.
  3.  DTI has facilitated tumor surgery by allowing the surgeon to avoid vital tracts.
  4.  DTI has allowed us to begin to understand the behavior of implanted brain electrodes (DBS) with respect to dense fiber tracts such as the internal capsule.

Having been here for almost twenty years before this project was instituted, I could see in 2007 how far fMRI had to go to be to even be on a par with other academic medical centers in the area of functional imaging.  To now be in the forefront of this field on the west coast shows how much has been accomplished.  I am very thankful that we have come so far.”

Dr. Kim Burchiel is an OHSU neurosurgeon and pioneer in deep brain stimulation surgery.

Kim J. Burchiel, M.D., F.A.C.S.

John Raaf Professor and Head
Division of Functional Neurosurgery
Department of Neurological Surgery
Professor, Dept. of Anesthesiology and Perioperative Medicine

“Recent AAN guidelines for use of fMRI in epilepsy surgery evaluation will lead to increased utilization of this technology (and fewer Wada tests).”



David Spencer, M.D.
Director, Comprehensive Epilepsy Center




“fMRI is crucial to delivering the most advanced neurosurgical care in the world, curing disease while preserving function. As part of our new intra-operative MRI brain surgery program at OHSU, we can now bring functional MRI into the operating room itself, offering the most powerful capabilities to the patients who need our advanced care.”


Nathan R. Selden, M.D., Ph.D., F.A.C.S, F.A.A.P.
Campagna Professor and Chair of the OHSU Department of Neurological Surgery.




The Neuroradiology section of Diagnostic Radiology offers a full range of state of the art computed tomography (CT) and magnetic resonance imaging (MRI) services for the neuroaxis including the brain, spinal cord, skull, orbits, sinuses, temporal bone, and neck of the adult and pediatric patient. 




Jeffrey M. Pollock, M.D. is an Associate Professor of Radiology




Interested in seeing more images from our neurodiagnostic technicians as well as other examples of #neuroart?
Follow @ohsu_brain on Instagram.

Parkinson’s patient worried about DBS surgery — but not about the team at OHSU

Dr. Kim Burchiel is an OHSU neurosurgeon and pioneer in deep brain stimulation surgery.

Dr. Kim Burchiel is an OHSU neurosurgeon and pioneer in deep brain stimulation surgery.

Marilee Thompson worried about having surgery to treat her Parkinson’s disease.

She knew the risks of deep brain stimulation surgery were low, she said, but “somebody makes up the statistics” on the few who have complications.

What she didn’t worry about was the surgical team at OHSU.

Thompson knew that Dr. Kim Burchiel, an OHSU neurosurgeon, had been doing deep brain stimulation for a long time. He was the first doctor in the U.S. to treat a patient with DBS, back in 1991, and he’s done it more than 1,000 times since then.

“I had great confidence in Dr. Burchiel because he was part of it so early on and had so much experience,” said Thompson, now 73.

Thompson was considering DBS because, a decade after her diagnosis with Parkinson’s, a progressive brain illness, she was tired of managing symptoms with medication alone. As medication took effect and wore off, she seesawed between having difficulty walking and having useless hands. Even timing a trip to the store became a chore.

Finally, the Beaverton resident thought: “I’m never going to be better than I am today. Can I live with that the rest of my life, maybe 20 or more years? And I just said, ‘No, I couldn’t.’”

* * *

Burchiel studied DBS in France under the neurosurgeon who developed it, Dr. Alim-Louis Benabid, then brought it to the U.S. DBS involves placing tiny electrodes in parts of the brain that control movement, then connecting them to a pacemaker-like device implanted in the chest. For 20 years, patients had to be awake during surgery because the surgeon needed responses from the patient to make sure the electrodes were in the right spots.

YouTube Preview ImageIn 2011, Burchiel became a DBS pioneer in his own right by developing “asleep” DBS. He uses MRI and CT scans to place the electrodes while the patient is under general anesthesia. An OHSU study confirmed the new technique’s precision, and “results have been amazingly good,” Burchiel said. He loves seeing grateful patients after “we’ve effectively turned the clock back” on their symptoms.

“Being able to participate in the development of this procedure means everything to me,” he said. “This is my legacy, to a large degree.”

* * *

Burchiel doesn’t work alone, however. DBS patients at OHSU receive coordinated care from a team of specialists in the nationally recognized Parkinson’s Disease and Movement Disorders Program. The team includes experts in speech therapy, physical therapy, psychology and neurology. Dr. Matthew Brodsky, the medical director of OHSU’s DBS program, is a neurologist who has lectured on Parkinson’s around the world.

“Teamwork is absolutely crucial to this,” Burchiel said. “Other people can do the surgeries that we do. There are other good neurologists in the country. But the fact is, when you put it all together and you have a team that’s been working together for 20 or more years, you really have something special.”

* * *

Marilee Thompson decided to go ahead with DBS at OHSU seven years ago. She’s glad she did.

“I can do so much more and feel so much better,” she said. She still takes medication to manage symptoms, and she’s starting to think about moving from her two-story, 2,500-square-foot home. For now, Thompson, a widow, manages her home and quarter-acre yard with some hired help.

But she also just returned from a two-week trip to Africa — the only continent she hadn’t visited — to see wildlife in Uganda with her sister and the Audubon Society of Portland. “I did everything everyone else did,” she said, including managing steep terrain with only walking sticks.

DBS, she said, enables her to live how she wants. “My outlook on life is just really positive.”

Learn more about DBS, Dr. Kim Burchiel and the care at OHSU on our DBS website.

Neuroscience research news you may have missed

Deep brain stimulation surgery: Eugene patient shares his story

YouTube Preview ImageParkinson’s disease nearly overwhelmed Colin Halstead’s life.

He needed two canes to walk. He took 27 pills a day. His voice was hard to understand, and his ability to make facial expressions had all but slipped away. His employer thought he needed to go on disability. Then he faced needing his parents to move from Sutherlin to Eugene to take care of him.

At 48, he felt like a child again.

“Just thinking about being sick for the rest of my life. Ill ─ chronically ill. And it’s only going to get worse,” Halstead said. “Those were the darkest days.”

Now, since having deep brain stimulation surgery at OHSU, things are looking up.

* * *

Halstead, now 52, developed a hand tremor more than a decade ago. His doctor at the time didn’t take it seriously, Halstead said, figuring that he had a familial tremor like his dad. Eventually, a doctor at OHSU diagnosed Halstead with Parkinson’s disease, a progressive brain illness that robs people of the ability to control movement.

Soon “everybody and his dog was sending me videos and some sort of miracle cure or something ─ usually with the word organic in it,” Halstead said. He’d seen a TV show about deep brain stimulation, or DBS, to treat Parkinson’s but at the time wanted no part of it.

Colin Halstead of Eugene is back working in his woodshop after DBS surgery.

Colin Halstead of Eugene is back working in his wood shop after DBS surgery.

DBS involves placing tiny electrodes in the brain and connecting them to a pacemaker-like device implanted in the chest that sends low-voltage electrical pulses to help control movement. At the time, patients had to be awake during surgery to respond to questions and commands as the surgeon made sure the electrodes were in the right spots. That’s still the case at many hospitals.

“I did not,” Halstead said, “want to be awake during the procedure.”

But as his symptoms worsened, Halstead found himself watching video after video of DBS surgery on YouTube. He learned that Dr. Kim Burchiel, an OHSU neurosurgeon and DBS expert, had developed a new type of DBS ─ “asleep” DBS. In 2011, Burchiel pioneered using MRI and CT scans to place the electrodes while the patient is under general anesthesia. An OHSU study showed the technique is exceptionally precise.

That was “huge,” Halstead said. “It changed my whole willingness to do it.”

Dr. Sara Batya, Colin Halstead's neurologist, thought Halstead was too young for DBS surgery at first. She reconsidered after talking to OHSU's Dr. Kim Burchiel.

Dr. Sara Batya, Colin Halstead’s neurologist, thought Halstead was too young for DBS surgery at first. She reconsidered after talking to OHSU’s Dr. Kim Burchiel.

* * *

As Halstead was wheeled into Burchiel’s surgical suite in October 2013, he became anxious as he recognized the equipment he’d seen in videos.

“The anesthesiologist came over and said, ‘Would you like to be asleep?’ and I said, ‘Yes, please.’”

The next day, Halstead’s dad, Jim Halstead, came into his room. Colin Halstead said his dad isn’t the emotional type, but “he started crying and said, ‘You look and sound like you used to look and sound.’”

His mom, Suzy Halstead, said: “It was like having our son back. … All the Parkinson’s symptoms for the most part were gone.”

* * *

Now Halstead manages his Parkinson’s motor symptoms with one pill a day. His voice and facial expressions are back. He no longer needs a cane.

“I have an umbrella stand that has all my canes in it in the living room,” he said. “It’s a reminder every day that I don’t have to use those anymore.”

He works full time as a counselor at Eugene’s First Baptist Church, overseeing about 20 support programs for people coping with divorce, loss and other issues. His supervisor, instead of suggesting he consider disability, recently encouraged Halstead to pace himself.

Colin Halstead's parents, Jim (left) and Suzy (right) are delighted with the results of their son's DBS surgery. It was like having our son back," Suzy Halstead said.

Colin Halstead’s parents, Jim (left) and Suzy (right) are delighted with the results of their son’s DBS surgery. “It was like having our son back,” Suzy Halstead said.

Halstead is also back to pursuing his love of travel, cooking and woodworking.

Since the surgery, he has traveled to Italy, where he hiked the uneven stone paths of Cinque Terra with only a walking stick. Next fall, he plans to tour Iceland in a camper van and then attend his 30th college reunion in Minneapolis. Next spring, he plans to visit New Zealand.

He’s back in his wood shop, completing projects to expand his living room and to outfit a teardrop trailer with windows, a bed and a fold-out kitchen. He figures he’s made about 30 double batches of biscotti to give away over the past year, using a friend’s sworn-to-secrecy recipe.

Dr. Sara Batya, his Eugene neurologist, tells him he’s a “poster child” for DBS because his response has been so good.

Even so, he had bouts with that he calls “Riverdance leg” early on, and he still has occasional tremors. He finds relief by adjusting his DBS settings with a remote device. He also has trouble with fine motor skills, such as opening plastic bags at the grocery store.

He knows DBS isn’t a cure for Parkinson’s disease. For now, nothing is.

Still, he would do it all again. “I tell people I’d do this once a year if I had to,” he said. DBS “gave me most of my life back.”

Learn more about DBS, Dr. Kim Burchiel and the care at OHSU on our DBS website.

The role of the athletic trainer in the concussion clinic


For many years athletic trainers have been on the sidelines helping concussed athletes, starting with the initial injury through the return-to-play process, and back onto the field.

We use our education and skills to assess and treat injured athletes, to make sure they don’t re-enter the game with concussion symptoms, to help them get the support they need in the school setting, and to collaborate with team physicians to make sure these athletes can safely return to the sports they love.

I spent eight years working on the sidelines before having the opportunity to bring this knowledge and skill set into the Sports Medicine Clinic at OHSU Gabriel Park.

At the clinic, I am the first person concussed patients see when they enter our concussion program. I gather information from the patient and their referring providers and utilize a variety of tests for balance, vision, and cognition in order to provide our physicians the most accurate and up to date information before they even walk into the room.

The physician reviews and assesses this information allowing for a much more efficient use of time with the patient so they can start on the most effective path to recovery.

After the patient leaves the first appointment with the physician, my role in the recovery process continues.

I am the patient’s “go-to” person in the clinic for questions regarding paperwork, referrals, or even just support as they walk the road to recovery.

I, at times, have the privilege to walk the road to recovery with patients from the first impact all the way to the return to the activity, providing continuity of care along the way.

If you do sustain a concussion I hope you come visit our clinic so we can work together to get you back to the activities you love.
Ryan Rockwood, ATC is a Certified Athletic Trainer in the OHSU Sports Medicine Clinic at Gabriel Park.

Researcher and neurologist grateful for early-career grant

The Oregon Charitable Tax Checkoff grant was the first research grant I ever received.

I was a neurology resident at the time, and with guidance from Dr. Jeff Kaye, the OHSU Layton Aging and Alzheimer’s Disease Center director, I applied for funds to complete a clinical study of a commonly used “outcome measure” in clinical trials with Alzheimer’s disease.2015_02_NEU_Liedtke_129-1200x628

That was also my first clinical research study.  We were able to publish the results in an excellent neurology journal, and the study introduced me to several leaders in the Alzheimer’s research field.

The Oregon Charitable Tax Checkoff pilot grant and its products were key to my subsequent receipt of a “VA Career Development Award”, a 6-year grant that included a faculty appointment and “protected time” to launch a research career.

Since then I’ve been fortunate to continue in academic neurology, publish more than 100 scholarly papers, and advance to a leadership position.

I’m very grateful for the Oregon Charitable Tax Checkoff grant and the start it gave me towards a very satisfying career.





Joseph F. Quinn, M.D.
Professor of Neurology, OHSU School of Medicine



You can contribute to Alzheimer’s research—in Oregon—by donating part, or all, of your tax refund to “Alzheimer’s Disease Research” on Schedule OR-DONATE, Oregon Charitable Checkoff Donations, on your 2016 tax form.

This research will increase our understanding of Alzheimer’s and bring us closer to new treatments, test ways to give effective support to caregivers and families of persons with Alzheimer’s disease and pave the way for additional funding from the National Institutes of Health and other national research programs.

Funds are administered through OHSU under the direction of Oregon Partnership for Alzheimer’s Research.

For more information, please contact:
Allison Lindauer, Ph.D., N.P.
Layton Aging and Alzheimer’s Disease Center

Lecture series explores the secret life of the brain

The workings of the brain remain mysterious.

Moral choices, the effects of physical touch, vivid dreams—we may not know how or why they happen, but they all can serve a purpose.

Our 2017 Brain Awareness Season lecture series delves into The Secret Life of the Brain.

The Criminal Brain
Monday, March 20
7–8:30 p.m.

Tavi Choi 120Why do some people live lawful lives, while others gravitate toward repeated criminality? Do people choose to be moral or immoral, or is morality simply a genetically inherited function of the brain, like mathematical ability?

Research suggests certain regions of the brain influence moral reasoning.

Dr. Octavio Choi will explore how emerging neuroscience challenges long-held assumptions underlying the basis—and punishment—of criminal behavior.

Buy your tickets now

Touch: The Science of Hand, Heart and Mind
Monday, March 27
7–8:30 p.m.

David Linden 2Dual-function receptors in our skin make mint cool and chili peppers hot.

Without the brain’s dedicated centers for pleasure and emotional touch, an orgasm would feel more like a sneeze—convulsive, but not especially nice.

Dr. David Linden, New York Times-best-selling author of The Compass of Pleasure, delves into how the organization of our body’s touch circuits is a complex and often counter-intuitive system that affects everything from social interactions to general health and development.

Buy your tickets now

Sleep, Memory and Dreams: Putting it all together
Tuesday, April 4
7–8:30 p.m.

Robert Stickgold 120It’s no secret that without a good night’s sleep we feel mentally sluggish. But what does our brain do while we sleep? Is there a scientific reason we dream?

Dr. Robert Stickgold will explore why dreaming and sleep are key to retaining, strengthening and processing new memories and skills.

Buy your tickets now

The Season also includes the always popular Brain Fair and Teacher Workshop. Don’t miss these free opportunities to learn about the brain.

OHSU Brain Institute Brain Fair
Saturday, March 11, 2017
10 a.m.–5 p.m.

kids touching a brain
The OHSU Brain Fair is an annual event at the Oregon Museum of Science & Industry (OMSI).

This year’s Brain Fair includes interactive exhibits, real human and animal brains, prizes and dozens of OHSU Brain Institute neuroscientists explaining and demonstrating their groundbreaking research in a way that will be fascinating for all ages.

No museum admission is required to attend.

Brain Awareness Teacher Workshop
Saturday, March 18, 2017

Sponsored in partnership with OHSU’s Office of Science Education Opportunities, The Moore Institute for Nutrition and Wellness and the OHSU Brain Institute, the annual Teacher Workshop is a unique opportunity designed to give teachers an insight into what role neuroscience plays in the classroom.

Speakers include Lawrence Sherman, Ph.D. and Lynne Messer, Ph.D., M.P.H.
Registration is currently full. Please email orbrains@ohsu.edu to be added to the wait-list.

Finding ways beyond the clinic to help patients navigate life with epilepsy



How much can you explain about epilepsy in a clinic visit?

When I meet with a new patient in clinic who has epilepsy, the discussion inevitably focuses on their seizures. What medications have been tried to control the seizures? Did they work? Did they produce side effects? How can we improve on what has already been tried?

But of course, anyone who has epilepsy knows that epilepsy is so much more than seizures.

Our professional societies have appropriately emphasized other things that should be discussed in clinic visits, and often these are among the primary concerns of our patients.

Several safety concerns should be discussed, including driving safety, occupational risks, and safety with swimming or bathing, among others. Women of childbearing age should be informed about pregnancy risks from seizures and anti-seizure medication, and preventive strategies should be reviewed.

There should be a discussion about the effects of anti-seizure medications on bone health and osteoporosis. The frequent occurrence of depression and anxiety in people with epilepsy should be addressed.  Patients need to be cautioned about the potential mood effects and possible suicidal thoughts that can be related to anti-seizure medication.

If seizures are not well controlled, non-medication treatments such as epilepsy surgery or medical devices to treat epilepsy should be discussed.

My point was probably clear several sentences ago—too many topics and too little time!

Maybe not everything can fit in a clinic visit, and other tools are needed.

Part of my work in neurology education has been focused on direct patient education.  For the last 10 years, I have been co-editor of the “Patient Page” feature of our leading professional journal Neurology.book-cover

In the Patient Page, we ask neurology experts to translate the latest scientific studies being reported in the journal into lay language and to put the findings into context.

Instead of sound-byte journalism, where we may hear one month that “blueberries prevent disease x” and the next month, that “blueberry consumption has been associated with disease y”, these articles go more in depth to explain how the research was done, what the main findings were, and most importantly, what they mean to people with the condition being studied.

I have also served on the Editorial Advisory Board for the patient publication Neurology Now since its inception.  Neurology Now is an award-winning magazine sponsored by the American Academy of Neurology (AAN). Subscriptions are free, and the goal is to connect people with neurological conditions and their caregivers to reliable information about their conditions and to illustrate how others have successfully navigated life with that condition.

It was, therefore, a natural progression for a book series for patients to arise from Neurology Now. Successful books on several topics (for example, Navigating Life with Parkinson’s Disease, Navigating the Complexities of Stroke) were early titles, and I was thrilled when the organizers of the series asked me to author a book titled Navigating Life with Epilepsy.

I knew it would take time, careful planning, discussions with other experts, and further in-depth discussions with my own patients to meet this challenge, but I saw the potential to close the gap between what can be covered in clinic and everything else that I want my patients to know.

Look for more about the journey in my next post…





David C. Spencer, M.D., F.A.A.N. is a professor of neurology, director of the OHSU Comprehensive Epilepsy Program and director of the OHSU Epilepsy Fellowship Program.


How the Oregon Charitable Tax Checkoff Program boosted one researcher’s career

Like many aspiring young clinical researchers, my journey began with an NIH funded post-doctoral fellowship with a goal to eventually develop my own independent research program. As a neuropsychologist with specialty training in smart home technologies and aging, I am interested exploring how we can develop new innovative assessment tools to improve the early detection and diagnosis of Alzheimer’s Disease.

With these interests and background, I was fortunate to obtain a fellowship position in the NIA-funded Layton Aging and Alzheimer’s Disease Center at OHSU working under the mentorship of Dr. Jeffrey Kaye, who is an authority in investigating the use of innovative technology to improve successful aging.

As a post-doctoral fellow, I was eligible to apply for several regional pilot grant opportunities designed for junior investigators who need pilot data to support larger national grant applications.

In 2015 I competed successfully for a research grant made possible by Oregon citizens through the Alzheimer’s Disease Research Fund of the Oregon Charitable Tax Checkoff GettyImages-635722946-senior-in-carProgram.

Securing this grant allowed me to carry out a 1-year pilot study to explore how monitoring the driving patterns of older adults can be used as a new tool for measuring brain health.

We tracked frequency, time of day, routes traveled, and amount of time spent driving in a small sample of seniors for 6 months. Results from this and future studies will help researchers understand how changes in routine driving habits as people age may be related to risk for developing dementia.

Having practical, non-invasive tools that can identify Alzheimer’s Disease as early as possible will be critical for effective treatment once medications become available.

Receiving grant support from the Oregon Charitable Tax Checkoff Program provided me with the opportunity to gather pilot data that I recently used to support a national (NIH) multi-site grant application for research on a larger scale to advance earlier detection, diagnosis, and treatment of Alzheimer’s Disease.

My NIH grant application would not have been possible without the generosity of Oregon citizens through the Charitable Tax Checkoff Program. After completing my post-doctoral fellowship I was able to obtain an assistant faculty position and am on a clear path to developing an independent program to advance research on Alzheimer’s Disease.


Adriana Seelye


Adriana M. Seelye, Ph.D. is an early career investigator in the Oregon Center for Aging & Technology (ORCATECH) and the Layton Aging and Alzheimer’s Disease Center at OHSU.



You can contribute to Alzheimer’s research—in Oregon—by donating part, or all, of your tax refund to “Alzheimer’s Disease Research” on Schedule OR-DONATE, Oregon Charitable Checkoff Donations, on your 2016 tax form.

This research will increase our understanding of Alzheimer’s and bring us closer to new treatments, test ways to give effective support to caregivers and families of persons with Alzheimer’s disease and pave the way for additional funding from the National Institutes of Health and other national research programs. Funds are administered through OHSU under the direction of Oregon Partnership for Alzheimer’s Research.

For more information, please contact:
Allison Lindauer, Ph.D., N.P., Layton Aging and Alzheimer’s Disease Center


Fatal fits and nods affect us all

fred-age-14-tumanguA child with intractable seizures is heartbreaking for family, friends and the neurologist who searches for effective therapy. But a child with intractable seizures who lives in dire poverty, who is malnourished, who cannot obtain medications, and who is rejected by government, by school and eventually by a desperate family is utterly devastating to anyone with compassion for humanity.

This is precisely the situation today for thousands of children affected by Nodding Syndrome in northern Uganda and South Sudan. A child with this illness visibly nods their head up and down when stimulated by food or cold. The child may develop mental and behavioral problems, develop generalized seizures, have lapses in consciousness, fall into fires or drown in a river. It can affect multiple children in a single family, which itself seeks to survive with meager food, dirty water and no social support. They resort to tying their sick children to trees to stop them wandering but, eventually, neglect sets in as they turn their attention to survival of the fittest: themselves and their remaining healthy children.

How did this happen? What is the cause? How can it be prevented?

The setting is one of prolonged politics-driven human conflict, civil unrest, population migration to internal displacement camps and the provision of emergency food supplies.

In Uganda, an important component was the war between the separatist movement known as the Lord’s Resistance Army (LRA) and the Ugandan government, which resulted in LRA recruitment of large numbers of child soldiers who were required to perform unspeakable acts of violence on their own families and communities. Yet, none of these children are known to have developed Nodding Syndrome.

In South Sudan, the children of cattle herders were spared, the epidemic falling on sessile subsistence farmers who grew crops for their own use with leftover sold at market. Families who lived by fast-flowing rivers where black flies breed had children more at risk for Nodding Syndrome, and a nematode parasite transmitted from insect to child was prominent in children with the brain disease. Some thought this parasite, which causes River Blindness, also causes Nodding Syndrome but it now seems likely this is a secondary infection because of a compromised immune system.

Peter Spencer, Ph.D., a professor of Neurology at OHSU, together with Valerie Palmer, OHSU Instructor of Neurology, has researched Nodding Syndrome in the three affected countries: South Sudan, Tanzania and Uganda.

Spencer participated in a World Health Organization outbreak investigation team in then-southern Sudan that first defined the illness [1].  In Tanzania, Spencer and Palmer surveyed the high-incidence focus of Nodding Syndrome and, with original clinical notes dating from 1960, demonstrated that head nodding was recorded as early as 1934 [2]. Then, in Uganda, they worked with OHSU students to show the relationship between civil war, population internment, and the outbreak of Nodding Syndrome [3]. In 2014, with dedicated NIH grant support, they joined with OHSU, OSU, and Ugandan researchers to carry out a case-control study of Nodding Syndrome in the devastated community described above. They announced their preliminary findings at an international conference on Nodding Syndrome in northern Uganda [4] and recently published in the Journal of Neurological Sciences, an official journal of the World Federation of Neurology [5].

The case-control study revealed that children with Nodding Syndrome had a significantly higher history of measles infection in Internal Displacement Camps, where population density was high, immunization was unavailable and food in very short supply such that affected families relied more on moldy maize.

Drawing on publicly available data, they showed that a measles epidemic had preceded the Nodding Syndrome by several years, a temporal relationship similar to that of measles and a devastating neurodegenerative disease called subacute sclerosing panencephalitis (SSPE).

They pointed out the similar clinical features of Nodding Syndrome and SSPE and called for detailed neuropathological studies to prove or disprove the relationship between measles and Nodding Syndrome.  The CDC had found crystalline structures in the brains of three affected children but the results had been uncertain and never published. However, cellular crystalline structures are found in SSPE and correspond to huge numbers of measles virus nucleocapsids that migrate to and then hide in the brain after the initial infant illness.  What causes their release from the brain years later is unknown, but Spencer and colleagues raise the possibility that immunosuppressive fungal toxins in moldy food may be key.

Nodding Syndrome is a devastating degenerative disease of the brain that nevertheless can be stabilized with the anti-seizure medication and proper nutrition. This has been demonstrated by the remarkable successes of a U.S. charity, Hope for Humans, that has cared and nurtured affected children in Uganda. However, their successes have not been widely recognized and their activities in Uganda are now threatened by financial shortages and lack of government support.

Hope for Humans partners with Dr. Spencer’s team in their effort to understand and prevent Nodding Syndrome, but this dreadful illness will not be overcome unless public support is forthcoming. While Hope for Humans seeks your support, Dr. Spencer’s international team continues to seek NIH support to test their hypothesis that Nodding Syndrome is a parameasles disorder that can be prevented by proper infant vaccination.

If true, this is an important lesson for all societies, our own included, to ensure that all infants receive recommended vaccinations not only to prevent childhood illnesses but also the devastating consequences later in life. Measles is just one of many so-called neurotropic viruses that can hide in the brain for years or decades before they reactivate and cause neurodegenerative disease.

Read more about this OHSU group’s global health studies, including research on a remarkable environmentally caused neurodegenerative disease that combines features of ALS, parkinsonism and Alzheimer-like dementia [6] and Palmer’s creative interprofessional educational course for OHSU health professional students right here in Portland [7].


1.     Spencer, P.S., Vandemaele, K., Richer, M., Palmer, V.S., Chungong S., Anker, M., Ayana, Y., Ayana, Y., Opoka, M.L, Klaucke, D.N, Quarello and Tumwine, J.K. Nodding Syndrome in Mundri County, South Sudan: Environmental, nutritional and infectious factors. African Health Sciences, 13:183-204, 2013.

2.     Spencer, P.S., Palmer, V.S. and Jilek-Aall, L. Nodding Syndrome: Origins and natural history of a longstanding epileptic disorder in sub-Sahara. African Health Sciences 13:176-82, 2013.

3.     Landis, J.L., Palmer, V.S., and Spencer, P.S. Nodding Syndrome in Kitgum District, Uganda: Association with conflict and displacement. BMJ Open, 2014 Nov 4;4(11):e006195. doi: 10.1136/bmjopen-2014-006195.

4.     Spencer, P.S., Kitara, D.L., Gazda S, and Winkler, A. Nodding Syndrome: 2015 International Conference Report and Gulu Accord. eNeurologicalSci 2016, pp. 80-83.  doi 10.1016/j.ensci.2015.11.001

5.     Spencer, P.S., Mazumder, R., Palmer, V.S., Lasarev, M.L., Stadnik, R.C.; King, P., Kabahenda, M., Kitara, D.L., Stadler, D., and Tumwine, J.K. Environmental, dietary and case-control study of Nodding Syndrome in Uganda: A post-measles brain disorder triggered by malnutrition? Journal of Neurological Sciences, 369:191-203, 2016.

6.     Spencer, P.S., Palmer, V.S., and Kisby, G.E. Seeking environmental causes of neurodegenerative disease and envisioning primary prevention. NeuroToxicology 2016 Apr 2. pii: S0161-813X(16)30039-0. doi: 10.1016/j.neuro.2016.03.017. [Epub ahead of print]

7.     Palmer, V.S., Mazumder, R., and Spencer, P.S. Interprofessional global health education in a cosmopolitan community of North America: The iCHEE experience. Academic Medicine 2014 Aug;89(8):1149-52. doi: 10.1097/ACM.0000000000000363..  Initially epublished as: Interprofessional Global Health Education at Oregon Health & Science University: The interprofessional Community Health and Education Exchange (iCHEE) Experience. Academic Medicine, June 10, 2014 [Epub ahead of print].

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