Amazing people come together to do amazing things. I have witnessed this through our Global Epilepsy initiative at Lurie Children's and CURE Uganda.
The goal was to elevate the offerings of epilepsy care in the region with knowledge and skill transfer in epilepsy surgery, which can produce a surgical cure for seizures in well-selected patients especially with lesional epilepsy. My decade-long relationship with colleagues in subSaharan Africa has only increased my respect and confidence in the surgical skill and dedication of pediatric neurosurgeons like Dr. Emmanuel Wegoye and Dr. Humphrey Okechi. With their service to babies born with congenital neurological problems, these children are now living longer, and facing quality of life issues in chronic diseases such as epilepsy and spasticity.
There are an estimated 1000 pediatric patients in the Mbale area who are taking antiseizure medications, who have never received a diagnostic imaging test nor an electroencephalogram (EEG). Without these, we cannot tell if they may benefit from, or be cured with epilepsy surgery.
Where do we start? The Lurie Children's EEG team has a successful, established Neurodiagnostic Trechnology training program, fully meeting ABRET accreditation standards. There is donated EEG equipment at CURE. There are no EEG technicians or pediatric neurologists in that part of Uganda. There are many patients in need.abret.org/index.php
With these realities in mind, the Lurie Children's Neurodiagnostic technology training program was redesigned to be 24 weeks long, with the goal of producing EEGs on patients in 6 weeks., then further refining skills and troubleshooting over time. The training material and online education portals were donated by the Global Initiative of the Neurodiagnostic Society (ASET), while the twice-a-week hands-on training (by Zoom!) has been conducted by the Lurie Children's team with 10 medical officers and neurosurgeons in Mbale, Uganda. Read more here.
Identifying the lateralize, lesional cases is one of the first practical goals. We engage in multidisciplinary epilepsy case conference online and work toward safe, effective pediatric epilepsy surgery care in Uganda and the region.
So proud of this initiative - the world is a small, engaged, wonderful place even in the pandemic. We are grateful for this opportunity help make a difference that will continue to grow in impact into the future.
I have had the honor of working in amazing families to learn about their epilepsy journeys and to develop informative on-demand webinars to address frequently asked questions.
November is Epilepsy Awareness Month, which provides a spotlight for a journey that we work on every single day of every year.
#LetsTalkAboutEpilepsySurgery is a terrific initiative started by Monika Jones JD at the Brain Recovery Project. I was honored to take part and discuss different types of epilepsy surgery for families approaching and considering these options for the first time. This is a great resource with a repository of a series of webinars with surgeons, epileptologists, providers, and advocates for pediatric epilepsy.
Neurostimulation is also a surgical option that is offering hope to those who may not have been considered surgical candidates before. My brilliant epilepsy colleague Dr. Joyce Wu and I joined Shae's mom along with Gabrielle Conecker and JayEtta Hecker of DEE-P Connections for a deep dive discussion in this webinar about Stimulators: Could a VNS, DBS, or RNS help?
Minimally invasive endoscopic epilepsy surgery for children at Ann and Robert H Lurie Children's Hospital of Chicago
I am grateful for the privilege of working with children and their amazing families. They inspire me every day. It is incredible that my minimally invasive endoscopic epilepsy surgery program has been able to help many young children and young adults. Baby Aurora's family shares their uplifting story and experience with endoscopic hemispherotomy. They traveled across country borders and state lines, and they felt that they were in the right place. The feeling is mutual. Ready about them in "Pediatric Neurosurgeon Halts Baby's Seizures with Minimally Invasive Brain Surgery."
Lurie Children's Pediatric Neurosurgery now offers funded Health Services Research Scholar & Research Fellowship opportunities
Never before has there been such fertile ground in developing Health Services Research, Global Health, and Quality & Safety in Pediatric Neurosurgery. Currently, we are accepting applications for funded positions for neurosurgery residents in North America to spend 1-2 years with our team to do specialized health services, global health, and/or quality/safety research in pediatric neurosurgery as Research Scholars.
Whether it is working with one of the longest running and most active multidisciplinary spina bifida programs in the country, the Chicago Center for Fetal Medicine, the Healthy Communities initiative, Northwestern's Institute for Public Health and Medicine, Northwestern's Institute for Global Health, Center for Education in Health Studies, the Smith Child Health Research, Outreach, and Advocacy Center, and the highly ranked Northwestern Department of Neurosurgery, collaborative opportunities abound for research scholars and trainees joining our team.
We understand that health is more than healthcare. As Lurie Children's mission is to improve the health and well-being in children, we in Pediatric Neurosurgery believe in expanding our sights beyond perfecting neurosurgical technique and beyond discoveries in the basic science labs. Building bridges across all pillars of pediatric research will translate discoveries from bench to bedside, to the population and into policy to help all children.
For instance, we want to know why patients have difficulties getting to neurosurgical attention, when we know we have surgical solutions to offer for diseases like epilepsy. At Lurie Children's, leaders like Dr. Matt Davis, chairman of pediatrics, leads funded community initiatives to work within and outside the walls of the hospital in partnership with community leaders and organizations, knowing that life expectancy at birth can vary by 17 years depending on the neighborhood in Chicago. We will partner with such initiatives to expand the reach of neurosurgery, so that we can characterize and understand disparities, barriers in access to care, and predictors of outcomes that go beyond surgical technique; taking it a step further, the community and state partnerships will allow a forum for intervention and building models for effective, inclusive care.
That is one example above; other projects as well as global health opportunities are also in the works.
We invite neurosurgery residents in North America to spend 1-2 years with our team to do specialized health services, global health, and/or quality/safety research in pediatric neurosurgery as funded Research Scholars. This pediatric-neurosurgery-specific forum is the first of its kind. We also have visiting research and observership positions for international colleagues to learn about pediatric neurosurgery at Lurie Children's as we work on studying neurosurgical healthcare delivery both locally, nationally, and globally.
Our funded initiatives in epilepsy and spina bifida will be a start, and we will develop within this rich, socially-responsible, active research community to work toward the promise of a cure, the promise of safer space, and the promise of a healthier future.
Learn more and apply by contacting firstname.lastname@example.org
Advancing minimally invasive pediatric epilepsy surgery with neuroendoscopic approaches: international collaboration
I am grateful to have the opportunity to work with neurosurgery colleagues around the world. This summer, I was invited to travel to Taipei to help in a case of a child with rapid decline and worsening intractable epilepsy. A multi-institutional and multidisciplinary epilepsy surgery conference was held, and the consensus was to offer hemispherectomy surgery. I operated with her local neurosurgeons, applying the minimally invasive endoscopic hemispherotomy technique I have published. This week, the girl and her family held a press conference with her team at the National Taiwan University Children's Hospital. I was able to teleconference in: she waved brightly and said thank you to me. That is the most wonderful Thanksgiving message I can remember.
Story in Chinese here.
Thank you to the team at Lurie Children's for their support!
TMC Pulse magazine did a wonderful feature on a boy and his family, telling their story leading up to his endoscopic hemispherotomy as well as life after the surgery.
We have a new epilepsy surgery offering to our patients: endoscopic hemispherectomy.
I am excited to see how remarkably well patients recover after endoscopic surgery! Unlike traditional open hemispherectomy/hemispherotomy surgery which involves a large craniotomy (skull bone opening) and a large question-mark-shaped incision on the top and side of the head to disconnect the left hemisphere from the right hemisphere, I can perform the hemispherectomy surgery through a small opening and with the help of an endoscope – a camera used in the procedure. The scar involves only a small opening at the top of the head. This smaller access surgery translates to less blood loss, less pain/discomfort, and quicker recovery.
This type of surgery is relatively novel, as it has been reported by only two other centers in the world - one in India and one in Detroit.
This type of minimal access surgery to treat seizures fits with our program's expertise with minimally invasive surgery and enhanced recovery, and expands the comprehensive offering of our multidisciplinary comprehensive pediatric epilepsy surgery program. We focus on delivering individualized care -- offering the right diagnostic workup, the right treatment, the right surgical plan tailored for each patient.
This new endoscopic surgery application was possible with intricate understanding of anatomy with my experience with open hemispherectomy surgeries, which I have written about in textbooks. Recently, I have spent time developing and perfecting these minimal-access surgical approaches in the anatomy lab, anticipating and working out all contingencies before offering this novel endoscopic surgery to patients.
While the epilepsy surgery program in my group has been known for laser ablation surgeries and traditional open surgeries, we continue to learn from our collective experience. We recognize that not every disease process or surgical goal can be addressed with the laser. There was room for development of better surgical techniques – something in between a laser and a traditional open surgery. Incorporating the use of a camera – the endoscope – gave a way to see what I need to see, while allowing for a smaller opening to safely achieve what needed to be done in surgery.
Epilepsy surgeries I offer through an endoscope include corpus callosotomy and hemispherectomy.
Illustration developed with our talented medical illustrator, Kathy Relyea.
I returned from my 6th annual trip as visiting pediatric neurosurgeon to Kijabe Hospital in Kenya this November.
My mentor Dr. Leland Albright and his wife Susan Ferson (the best nurse practicitioner ever) spent many years developing pediatric neurosurgery in Kijabe. Read their amazing blog here.
While every year I am grateful for the privilege of serving in a place that has such need, there were many things that made this visit special:
I spent time with Dr. Albright, who was returning to visit Kijabe for the first time after more than 2 years away.
Dr. Kathryn Wagner, a neurosurgery resident from Baylor College of Medicine, came to Kijabe with us. In 2 weeks, Kathryn took care of a variety of neurosurgery problems that many in North America have only ever seen in textbooks.
We worked alongside pediatric neurosurgeon Dr. Emmanuel Wegoye - a Ugandan-born neurosurgeon (and wonderful father, husband, human being!) whose path has taken him to train with awesome pediatric neurosurgeons including Dr. Ben Warf in Uganda and Dr. Graham Fieggen in South Africa. I know this marks the start of years of friendship and collaboration.
Healthcare reform is a crucial issue.
While much debate surrounds government finances, I am most concerned about our children's health.
Click here to read my blog post in #NeurosurgeryBlog, a forum for health policy.
Pediatric Neurosurgery team
Things we are passionate about
my TCH blog post on
- organizing your medical records for doctor's appointments
- Craniosynostosis 101
our patients' moms blog about their family's
- epilepsy surgery journey
- craniosynostosis surgery journey
some of our inspiring patient and family stories in the news:
- epilepsy surgery
- craniofacial surgery
- AVM surgery
Cross-post & links to my posts on other sites
Updates on pediatric cerebrovascular disease in #NeurosurgeryBlog
Comments on health policy, pediatric neurosurgery, and the Affordable Care Act in the #NeurosurgeryBlog
Sharing on the "ask-the-doctor" series on the Children's Craniofacial Association's blog
- helmet FAQs: after endoscopic craniosynostosis surgery
- helmet FAQs: positional plagiocephaly
Top rated neuroscience blog