Advancing Pediatric Epilepsy Neurosurgery with Sandi Lam, MD, MBA

Surgical innovations are changing the field of neurosurgery and improving the lives of children with conditions such as epilepsy at Lurie Children's. Sandi Lam, MD, MBA, the head of pediatric neurosurgery at Ann & Robert H. Lurie Children's Hospital of Chicago, is a leading specialist in the areas of minimally invasive epilepsy surgery and neurovascular surgery and is known for discovering curative treatments for life-threatening neurological disorders. In this episode, she shares her expertise in minimally invasive and endoscopic techniques and how her research and expertise is transforming pediatric epilepsy care around the world.  

“Seizures come at a high burden: a high medical burden, a high economic burden, a high social burden. They come with a lot of stigma. So, understanding that we have surgical cures for some forms of epilepsy is very relevant when we have an attainable treatment that can help people be free of their disease or be able to control their disease, not just here in the U.S. or in our city, but also people from all walks of life and in other countries and other parts of the world.” Sandi Lam, MD, MBA 
Division Head, Neurosurgery 
Yeager Professorship in Pediatric Neurosurgery 
Professor of Neurological Surgery, Northwestern University Feinberg School of Medicine 

Show Notes

• Epilepsy is a disorder characterized by having recurrent seizures. While there are many medications used to treat seizures, there are many instances of drug-resistant epilepsy. In such cases, Dr. Lam says surgery can be vital. In fact, epilepsy surgery can save lives. In a recent study led by Dr. Lam published in the Lancet Child and Adolescent Health, children who had epilepsy surgery were found to have higher survival in the long-term than those treated with antiseizure medications only.  
• Treatments for epilepsy include: removing or resecting the areas of the brain that are causing seizures, using neurostimulators to help modulate signals in the brain, MRI-guided laser interstitial thermal therapy, stereotactic electroencephalography, which can be done with the help of robotics, as well as other minimally invasive techniques.  
• Trust between surgeons and epilepsy care and the parents is absolutely vital, as parents are essential advocates for their children's health and treatment.
• Pediatric epilepsy treatments require a collaborative multi-disciplinary team: surgeons, neuropsychologists, neuroradiologists, and epilepsy neurologists. Electrodiagnostic technicians, nurses, social workers and more are part of the team.  
• Dr. Lam is one of the only pediatric neurosurgeons in the world offering a complex procedure called endoscopic hemispherectomy surgery, which disconnects the affected side of the brain to treat seizures, utilizing minimally invasive techniques for less blood loss and better patient recovery.  
• Research estimates two out of three children with drug-resistant epilepsy never receive the benefit of surgery. Dr. Lam finds this concerning and attributes the issue to multifactorial systemic issues in the healthcare system that have yet to be thoroughly explored and understood, including language barriers, practice variation, as well as socioeconomic barriers.
• Epilepsy affects over 80 million people in the world, and it disproportionately affects people in low- and middle-income countries. With an interest in global health, Dr. Lam works with neurosurgeons in these countries, building sustainability with knowledge transfer and skill transfer by offering her team’s expertise in epilepsy care and providing training in epilepsy surgery. This type of program development is impactful, especially since these regions of the world have a higher child population than in the US. For instance, Dr. Lam has performed hemispherectomy surgeries safely and effectively in Uganda, which has a good chance of surgical cure for appropriately-selected patients who were previously living with epilepsy.  
• The field of neurosurgery is rapidly evolving with advancements like neurostimulation, neuromodulation, psychosurgery, incisionless surgery using high-intensity focused ultrasound and promising gene therapy trials, to name a few. 

Transcript

[00:00:00] Erin Spain, MS: This is Precision, Perspectives on Children's Surgery, from Ann & Robert H. Lurie Children's Hospital of Chicago. I'm your host, Erin Spain. On this podcast, we introduce you to surgeons at one of the country's most renowned children's hospitals to find out how they're transforming pediatric medicine. Surgical innovations are changing the field of neurosurgery and improving the lives of children with conditions such as epilepsy at Lurie Children's. Dr. Sandi Lam, a pediatric neurosurgeon, is a leading specialist in the areas of minimally invasive epilepsy surgery and neurovascular surgery and is known for discovering curative treatments for life threatening neurological disorders. Dr. Lam is the Division Head of Neurosurgery and the holder of the Yeager Professorship. in Pediatric Neurosurgery. She joins me today to talk about her expertise in minimally invasive and endoscopic techniques and how her research is transforming pediatric epilepsy care. Welcome to the show, Dr. Lam. 
[00:01:08] Sandi Lam, MD: Thank you. It's a pleasure to be here. 
[00:01:10] Erin Spain, MS: You are well known for your work in epilepsy surgery, but let's take a step back and talk about epilepsy. So describe it to me, what is it and how has our understanding of this disorder changed since you started in this specialty? 
[00:01:23] Sandi Lam, MD: Epilepsy is a disorder characterized by seizures, and it means having more than one seizure and having a condition that is marked by recurrent seizures. We have come very far as a field in understanding how to treat seizures, and many medications have come on the market for treating seizures. So while the number of anti seizure medications has grown, we also know that there are many instances of drug resistant epilepsy, and we have good surgical treatments for drug resistant epilepsy. When I first started training in neurosurgery, a lot of what we understood for Surgical treatment of epilepsy was identifying where the seizures came from and then doing surgery to remove or target those areas that were causing the seizures. And we would have to identify if those areas causing seizures in the brain were able to be safely removed or resected. Over time, this thinking has changed and evolved, where we are able to not only remove or resect the areas of the brain that are causing seizures, but we're able to use neurostimulators and help modulate the signals in the brain. We're also able to have other tools such as lasers for MRI guided laser interstitial thermal therapy so that we could have more minimally invasive targeting of areas of the brain that are causing seizures. And we're also able to use other surgical tools like neuronavigation, like GPS for the brain that helps the surgeon in the operating room. We also have robotics that are able to help us target. depth electrodes to deeper targets in the brain and record seizures from such depth electrodes so that we can more precisely understand the networks in the brain. We've evolved in a way where we are changing how we think about seizures and how the brain works in epilepsy. Lastly, brain surgery has changed in that the way that we do craniotomies or brain surgery is such that the opening of the brain surgery or the opening of the skull to be able to reach the brain to do surgery can be more minimally invasive, such as with robotics, with better stereotactic targeting, or with better tools such as better optics, better microscopes, and endoscopes. 
[00:03:59] Erin Spain, MS: All of these advances, what does this mean for your patients who are undergoing these surgeries? 
[00:04:03] Sandi Lam, MD: For patients, it means that there are many more options to try to get to a cure or to have decreased seizure burden so that our quality of life for the patients could be better. Also means that patients who were not candidates for epilepsy surgery 10 years ago or 20 years ago are now candidates for epilepsy surgery because we have many more tools in our toolbox for treating epilepsy with epilepsy surgery. 
[00:04:31] Erin Spain, MS: Tell me about your partnership with parents of the children who are about to undergo these surgeries or when they undergo and after surgery. What important role do parents play in you having successful outcomes? 
[00:04:43] Sandi Lam, MD: Parents are everything. That's part of being in a pediatric field when you treat a child. It's not their fault that they have this disease that holds them back in life, that makes their quality of life and their health not optimal. And it's not their fault that through their disease that it affects the family and the community. And parents are Fierce advocates of their children. So having trust with parents and families is incredibly important. And that goes both ways, that parents look to my team to be able to be partners with them, to try to look for the best ways to have their child have the best outcomes, but also it means that I need to understand that parents are partnering with me to trust me to take care of their child, their most precious thing in life. And I take that very seriously. 
[00:05:45] Erin Spain, MS: To be clear, you're always looking for ways to improve the surgeries that you're doing. And you do research and you involve these children in your research. You led a research study that found epilepsy surgery in infants younger than three months is safe. When it's performed at an experienced surgery center like Laurie Children's. Tell me about that study. Why is that an important finding in treating epilepsy? 
[00:06:09] Sandi Lam, MD: In pediatric epilepsy and pediatric epilepsy surgery time is very important. When children are young and they're growing, they are developing and their brains are developing, and really every minute lost to seizures or time when the brain is. Developing, and the child is having their brain be affected by seizures or the side effects of being on anti seizure medications. All of that is time lost, and surgery can sound intimidating or scary, and in the past was thought to be a treatment of last resort. Now we understand that surgery can offer a lot of hope and can even offer a cure for Well selected cases of epilepsy, the message is that surgery is not scary. Surgery is not the treatment of last resort, and it should be considered a really important part of the toolbox that we have full of tools for us to treat seizures together, to combat seizures together. So considering surgery early in a child's diagnosis and disease is important. And in order. For us to study that as an epilepsy surgery community, we reached around the world and we put together our cases and our experience to look at the safety and the feasibility of doing epilepsy surgery in children who are very young. And we defined that in the study as children who are younger than three months of age. We showed that we were able to do epilepsy surgery safely and effectively and achieve high levels of seizure freedom for children or babies and infants of this age. It's important to remember that epilepsy surgery is a team sport. It's not just about the surgeon. It's not just about the epileptologist. It's actually something that. needs a team of specialists who are experienced and capable of taking care of children, young children, and the sickest children. In the example of Lurie Children's and our collaborators in this study, that means an experienced surgical team, anesthesia team, intensivists team in the intensive care unit, the pediatricians, the neurologists, the epilepsy team, and everything that comes along with that. 
[00:08:37] Erin Spain, MS: So not only have you shown that you can care for these babies, these infants with epilepsy, but you are also looking at treating other patients with seizure disorders who may not be able to have surgery anywhere else. In fact, you're one of the only pediatric neurosurgeons in the world offering a complex procedure called endoscopic hemispherectomy surgery. Explain this procedure to me and how you came to offer it. 
[00:09:03] Sandi Lam, MD: The hemispherectomy surgery or a hemispherectomy, there are multiple terms for it, but hemispherotomy means operating on half of a brain and disconnecting half of a brain and this is a specific type of epilepsy surgery that is a child or a patient is having seizures from an entire hemisphere or one entire bad side of the brain. There are multiple conditions that could lead somebody to require a hemispherectomy surgery, including a perinatal stroke, having a stroke as a baby and having damage to an entire side of the brain or other types of conditions, like an autoimmune condition, like Rasmussen's encephalitis or other syndromes like Sturge Weber or other types of malformations that children are born with like cortical dysplasia or hemimegalencephaly. So there are many conditions that All lead to the indication for a specific type of surgery. And this would be the hemispherectomy surgery. So in planning to disconnect an entire bad side of the brain from the good side of the brain is really one of the biggest surgeries in terms of planning for a surgery. It means that we have to access a large portion of the brain and very deep structures in the brain. When I learned how to do this surgery at a high-volume center where I trained at UCLA, we did this in a way where we would open the entire side of a head which would allow us access into one side of the brain so that we could disconnect half the brain from the other. Over time, through our research and through our experience and understanding of anatomy and really innovating together as a field, we realized that we could do this through more minimally invasive techniques and smaller openings in the skull and smaller cuts in the skin. And we're able to do this with microscopes and endoscopes and tools that have evolved over time that allow us to see deep into the brain and have very precise, accurate control of the structures that we're operating on. So I use an endoscope. like a surgical camera that will allow me to be able to see where I'm making these cuts deep in the brain to disconnect a bad side of the brain from the good side of the brain. With that, we're able to make the skin incision much smaller and really minimize Blood loss to the point where most of the children I operate on for this type of big hemispherectomy surgery, through this minimally invasive technique, no longer need blood transfusions and many don't need to be in the intensive care unit. That means that recovering from surgery happens sooner and faster and children can really be kids and hopefully be able to have their best chance at seizure freedom and living life to their full potential. 
[00:12:06] Erin Spain, MS: How many of these procedures have you done and how many other folks are able to do it in this way that you just described? 
[00:12:12] Sandi Lam, MD: There are few centers in the world that have a concentrated experience in endoscopic hemispherotomy. I am one of three people in the world that publish on this really tried to advance this type of technique. I've personally done 50 hemispherectomies through the endoscopic technique. Before that, I did them open, so my accumulated experience is larger than that, but the endoscopic technique I switched to completely about five or six years ago, and I've been very impressed by how well the patients do with this type of surgery and how much quicker they can start recovering from surgery. 
[00:12:56] Erin Spain, MS: Do people come from all over the country to receive this surgery from you? 
[00:13:00] Sandi Lam, MD: Yes. Epilepsy is not something that develops overnight and often families have dealt with this journey for a long time. And the decision for epilepsy surgery is not taken lightly by families or their treating teams. This is the type of surgery where families often do their research and they look around to try to make the best decisions for their children and to try to seek the best care and the most experienced teams. So I am very lucky and very grateful that I get to meet families from around the country and around the world who are looking for this type of procedure. 
[00:13:43] Erin Spain, MS: You have said that this surgery can be life changing for your patients, but research shows that two out of three children with drug resistant epilepsy never get the benefit of epilepsy surgery. Why is that, and how can that number be improved? 
[00:13:57] Sandi Lam, MD: There is a drastic underutilization of epilepsy surgery, and seeing epilepsy surgery be such a wonderful opportunity for children with drug resistant epilepsy to have a cure or have fewer seizures, that epilepsy surgery can change lives, can help kids, can help families, and knowing that we have a good surgery, but we could help so many more kids who aren't coming through our doors and aren't getting the care that they could benefit from, that is something that should motivate all of us in pediatric health care to do better. For me, it doesn't matter that we have a good surgery that we can offer. It doesn't matter that I work with the best teams here at Lurie Children's. It means that we need to keep on doing this every single day to do the best that we can for our patients, but we also need to strive to do better and do more, and that means understanding how to reach families and patients who could benefit from our care. The reasons for why people don't get epilepsy surgery are probably multifactorial. We don't understand it completely at this point, but my research program over the past decade has pointed consistently to the fact that Kids who could benefit from epilepsy surgery are not getting it or getting it in a very delayed fashion, meaning that they have spent years having seizures on medications that are not able to control their seizures before they actually get epilepsy surgery. If by our estimates that The one in three children who can benefit from epilepsy surgery are actually getting epilepsy surgery. It means that two out of three kids who could benefit from epilepsy surgery are not getting epilepsy surgery. To me, we are failing these children as an entire society and an entire healthcare system. So we have to do better to raise awareness among everybody who treats children, everybody who takes care of children. And we also have to build trust to have everybody understand that we are trying to help children, help parents, help families, and help communities deal with this devastating chronic disease and try to be able to achieve a healthier future together. Surgery is not a last resort. Surgery is a great tool in the toolbox we have to combat seizures, and that includes medicines, ketogenic diet, surgeries, and many more things that we know that we can do as a team, and we really need that chance to be able to work with families and patients so that we can achieve the best future together. We're not able to break down all of these barriers all at once, but we need to be cognizant that there are barriers and there are barriers to care on multiple levels so that we can start doing better. Some barriers could be the way the healthcare system is set up, some could be financial, some could be because of insurance, some could be social and cultural beliefs, and some are practice variations among different providers. And that's just to name a few examples. So it really is something that takes a village or more than a village, but it's something that is meaningful and we need to tackle this together. 
[00:17:34] Erin Spain, MS: And you want to break down these barriers beyond the United States as well. You have a strong interest in global health, and you're actually working with neurosurgeons in low and middle income countries to teach them some of your techniques. Tell me about that and what motivates you to share this expertise around the world. 
[00:17:53] Sandi Lam, MD: Epilepsy is the most common chronic neurologic condition in the world, so it affects over 80 million people in the world and it actually disproportionately affects people in low and middle income countries. Aside from the fact that we're not getting to everybody who could benefit from epilepsy surgery care in our own country, it means that there are many people around the world who need help from this chronic, devastating condition. Disease and many have never been able to have the diagnostic workup or the care that they need to be able to treat the seizures. Seizures come at a high economic burden, a high social burden, and come with a lot of stigma. So, Understanding that we have surgical cures for some forms of epilepsy is very relevant when we realize that we can help people, not just here in the U. S. or in our city, but people from all walks of life and in other countries and other parts of the world. There are not enough neurosurgeons and definitely not enough pediatric neurosurgeons in the world. By estimates, we are about 22, 000 neurosurgeons short in the world. Now, how do we help that? I think part of the moral obligation of pediatric neurosurgery is that we aim for skill transfer and knowledge transfer to be able to help people in the parts of the world that have a large part of the population as children. So that means in low and middle income countries, there are a lot more children than there are here in the U.S. and there are not enough neurosurgeons. There are very few trained pediatric neurosurgeons. So I work with a team in Uganda right now, along with our Lurie Children's Epilepsy Team to train The team there to identify patients with seizures, to do EEGs or electroencephalography diagnostics, to figure out where the seizures are coming from, and to identify patients who could benefit from epilepsy surgery. Once we identify patients who can benefit from surgery, the surgeons there, my colleagues who I've worked with for over a decade, are able to do these surgeries safely and effectively. 
[00:20:26] Erin Spain, MS: So many things have changed in pediatric neurosurgery, and you've been at the forefront of a lot of these changes, but what's next? What can we expect? What's coming? 
[00:20:34] Sandi Lam, MD: There are a lot of exciting things that are happening in neurosurgery and pediatric neurosurgery. Neurostimulation and neuromodulation is something that is changing lives already. It is helping people with seizures who were never candidates for epilepsy surgery in the past. And the way that these devices... are able to record and learn brain patterns and then apply what we see in these patterns and deliver impulses or tell the brain to calm down. That is something that we haven't seen before, the way that we're able to deliver responsive neurostimulation and neuromodulation. Another application is the field of psychosurgery that is already evolving in adults, and not quite in children yet, but the more that we understand the way the brain works and networks. We're going to be able to apply neuromodulation in a way that can help people with debilitating illness. The other frontier is gene therapy, and we are excited to be part of an upcoming clinical trial to really switch the genetic code or to offer that promise of a cure for diseases that don't have any cures right now. For instance, with Dravet syndrome, a rare, devastating epilepsy, that disease will have an upcoming clinical trial that we are participating in where we will deliver gene therapy to the brain, and that holds the promise of a cure. Having the central nervous system and gene therapy be a platform to modify or cure diseases that affect the brain and don't previously have a cure, that is incredibly exciting. There are also interesting improvements in technology that will be very important for adults and children. For instance, the prospect of incisionless surgery with High Intensity Focused Ultrasound or HIFU means that we are able to focus sound waves to hit each other at a very specific spot, almost like breaking up kidney stones, but now applying that to targeting a certain area of the brain to make a lesion so that we can treat diseases like essential tremor or other types of movement disorders and epilepsy where the seizures are arising from the brain. So that is already being applied in adults and the prospect of thinking about applying that in children is going to be revolutionary. 
[00:23:26] Erin Spain, MS: Well, thank you so much, Dr. Sandi Lam for coming on the show and talking about your work and all of the opportunities that there are for patients at Lurie Children's. We appreciate it. 
[00:23:35] Sandi Lam, MD: Thank you so much. 
[00:23:38] Erin Spain, MS: For more information, including how to make a referral or an appointment, visit luriechildrens org. 

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