Improving Treatment for Young Patients with Movement Disorders

Young patients with functional neurological complications, or problems with walking, general movement or chronic pain, can have trouble maintaining a high quality of life. Experts in this field like Dr. Jeffrey Raskin, who leads the Functional Neurosurgery Program at Lurie Children’s, aim to provide treatment options that can help these pediatric patients and their families thrive. Learn more about Neurosurgery at Lurie Children's. 

Featuring

Jeffrey S. Raskin MS, MD, FAAP, FAANS, is a board-certified pediatric neurosurgeon at Lurie Children’s and oversees the hospital’s functional neurosurgery clinic. He is an assistant professor of neurological surgery at Northwestern University Feinberg School of Medicine.

Learn morre about Jeffrey Raskin, MD, MS

Topics Covered

• Raskin is an expert in “functional neurosurgery,” which he said generally refers to treating and managing care for patients with either epilepsy, pain disorders or movement disorders.
• Patients with these conditions are seen in the Complex Movement Disorder Program, a combined effort between Lurie Children’s Divisions of Neurology and Neurosurgery and the Shirley Ryan AbilityLab. These teams see and evaluate patients together and discuss best treatment options for that patient.
• Treatment options vary widely depending on the type of condition and the patient. Many patients start by having physical therapy, stretching or serial casting-type procedures. They may be evaluated for intrathecal baclofen treatments, where intrathecal baclofen is pumped into a central nervous system to help relax specific muscles. Patients also may be candidates for surgical treatments Dr. Raskin specializes in called rhizotomies and deep brain simulations.
• It is key for families/caregivers to be involved in taking care of these complex patients, which underscores Dr. Raskin and his team’s commitment to patient-centered care.
• Raskin is hopeful for patients with movement disorders, considering the improved knowledge from referring providers and families that neurosurgical procedures exist that are safe and effective at improving the patient’s quality of life.

Additional Reading

• Dylan Walks Again Thanks to Deep Brain Stimulation (DBS)

Transcription

Dr. Jeffrey Raskin: Neurosurgical procedures exist and they are safe and also effective at treating the hypertonia and ultimately improving the quality of life for these children.

Maggie McKay (Host): When you're a child, you want to be free of limitations, able to move freely. But that's not always the case for everyone. Young patients with functional neurological complications or problems with walking, general movement or chronic pain can have trouble maintaining a high quality of life. Experts in this field like Dr. Jeffrey Raskin, our guest today who leads the Functional Neurosurgery Program at Ann & Robert H. Lurie Children's Hospital of Chicago, aim to provide treatment options that can help these pediatric patients and their families thrive.

Today, we'll meet Lurie Children's Pediatric Functional Neurosurgery expert, Dr. Raskin, and find out his philosophy of care, how the field has advanced through the years and more.

This is Precision: Perspectives on Children's Surgery, the podcast from Ann & Robert H. Lurie Children's Hospital. I'm Maggie McKay. What a pleasure to have you here today, Dr. Raskin. I can't wait to hear more about what you do.

Dr. Jeffrey Raskin: Well, thank you so much for having me. It's a privilege to be able to speak to you and all the people listening.

Maggie McKay (Host): Will you please introduce yourself and tell us what your title is and how you chose this area of medicine?

Dr. Jeffrey Raskin: I'm Jeffrey Raskin. I'm a board-certified pediatric neurosurgeon, and I am director of the functional Neurosurgery Program at Lurie Children's.

Maggie McKay (Host): And how did you get into this? How did you choose this specialty?

Dr. Jeffrey Raskin: Well, functional neurosurgery is I think one of the most interesting areas of neurosurgery in general. It deals with three pillars of difficulties that patients have, and that's epilepsy, pain disorders and movement disorders. And I knew I wanted to work with children in residency when you're training to be a neurosurgeon, but then came to functional neurosurgery in fellowship where I trained at Texas Children's Hospital and got quite a lot of experience in the treatment and surgical management of patients with particularly movement disorders and epilepsy.

Maggie McKay (Host): And so you touched on it a little bit, your specialty is referred to as functional neurosurgery. So what does that mean exactly?

Dr. Jeffrey Raskin: Exactly it means taking care of children with movement disorders, pain syndromes or epilepsy. And within each of those, there are many subdiagnoses. But for example, movement disorder patients generally have something called hypertonia where their muscles are continuously told by their central nervous system to contract. These patients either have a genetic diagnosis or they have an underlying condition like cerebral palsy, could be underlying tumor or spinal cord injury. There are many different diagnoses that give rise to hypertonia. Hypertonia can then be subdivided into multiple different subdiagnoses, most commonly is spasticity and dystonia. And those are the two most common conditions I treat in patients with hypertonia in general.

Maggie McKay (Host): Tell us about the training you've done that makes you the expert in doing this procedure.

Dr. Jeffrey Raskin: The training to be a pediatric neurosurgeon in general is seven years of residency followed by one year of pediatric neurosurgery fellowship. For functional neurosurgery, oftentimes the pediatric neurosurgery fellowship is subspecialized to focus on patients with movement disorders, pain syndromes, and epilepsy.

Maggie McKay (Host): What's your philosophy of care?

Dr. Jeffrey Raskin: Well, I believe in patient-centric, multidisciplinary care. So I believe that we should put the patient in the center of a care circle and then all physicians and clinicians in general, including advanced practice providers and nurses and technicians should focus on what's best for the patient at all times and that promotes a collaborative discussion-type environment, where patients can benefit from seeing multiple providers and getting multiple opinions all at one time. And it decreases the number of times a patient needs to come to a clinic, decreases the number of times patient needs to come downtown to Chicago in general.

Maggie McKay (Host): That's so smart. Have you started using Zoom during the pandemic?

Dr. Jeffrey Raskin: Yes, of course. Telemedicine has really revolutionized medicine in general. One of the, I think positive, side effects of having a global pandemic is adapting medical care to emerging technologies like Zoom and like other virtual platforms. We have certainly been doing that in pediatric neurosurgery. And I think it's been quite effective at limiting the burden of patients transporting their physical selves downtown when it's not necessary.

Maggie McKay (Host): Right. What is your process like for making a treatment plan for a patient?

Dr. Jeffrey Raskin: So the movement disorders patients are seen in something called the Complex Movement Disorder Program. This is a combined program with the Shirley Ryan Ability Lab and Lurie Children's Hospital Neurology and Neurosurgery. And we all see and evaluate patients together, including the physiatrists at Shirley Ryan Ability Lab and the other members of the clinician team. And we see the patient concurrently and then we discuss what might be best for that patient and we counsel the family and the patient at that time and come up with a plan.

Maggie McKay (Host): Does your approach to this procedure treatment differ from others in some way? If so, how and why? You mentioned the Shirley Ryan Ability lab. That's not something everybody has access to, correct?

Dr. Jeffrey Raskin: Yeah, that's correct. I think most places that treat children with complex movement disorders have a multidisciplinary team. I think what sets our team apart to a large extent is the relationship with Shirley Ryan Ability Lab, which is the number one rehab hospital in the nation for more than 30 years. And there is a tremendous number of patients that they treat within the region and also by national referral patterns. And so we see a lot of very complex patients and we have the opportunity to offer them all of the surgical management strategies emerging and sort of old school that exists through Lurie Children's Hospital.

Maggie McKay (Host): What is the treatment like? How long does it take? How big is the team?

Dr. Jeffrey Raskin: Well, often these patients are born with movement disorders that progressively worsen over time. And so there is no one single strategy that works. A lot of these patients start out by having physical therapy, stretching, serial casting type procedures and then may evolve to include Botox and phenol injections. And ultimately, they become refractory or they no longer respond over the course of years. And so then they come to our complex movement disorder program and we evaluate them for either intrathecal Baclofen, where we put in a pump to diffuse baclofen into the central nervous system or rhizotomies which is where we prune some or all of the nerves going to the arms or legs. And then the third option is deep brain stimulation for carefully indicated patients.

Maggie McKay (Host): And tell us about how the treatment corrects or alleviates the condition?

Dr. Jeffrey Raskin: So all of these procedures are designed to decrease the output of the central nervous system to the muscles. So in all of these patients, the central nervous system tells the muscles to contract when it's inappropriate. It's an involuntary movement disorder. And what we do is either surgically disconnect the nerves from the muscles, that's rhizotomy, or we infuse an antispasmodic medication called baclofen, which works on the central nervous system to decrease the constant tone that the central nervous system is telling the muscles to contract, or we implant deep brain stimulators. And the deep brain stimulators, it's less really known how they work, but we know that particularly in primary dystonic patients where they have a genetic component to their dystonia, that they respond very well to deep brain stimulation.

Maggie McKay (Host): There's a lot involved. And it sounds like every patient is different, so there are different treatments for them. Is that right?

Dr. Jeffrey Raskin: Yeah, that's correct. Within the broad umbrellas of intrathecal baclofen, deep brain stimulation and rhizotomies, each patient is subtly nuanced, like some patients will have too much tone in one arm. Some patients will have too much tone in both legs. Some patients are ambulatory or able to walk and we just want to make them a little bit better, in which case we would do selective dorsal rhizotomy, which is cutting selectively of some of the dorsal nerve roots. Whereas other patients are non ambulatory, they don't walk, they're requiring total care, but it's not possible for families to provide hygienic care and they have painful spasms that close their legs. And those patients, we might cut most of the nerves going to the legs and those patients would then have flaccid legs, they would have legs that no longer are very high tone, and sometimes that's the goal. So it's really important in treating these very complex patients to involve the families or the caregivers in particular and make sure that we're all aligned with our outcome.

Maggie McKay (Host): When it comes to recovery and the long-term effect typically from this procedure, what's that like?

Dr. Jeffrey Raskin: The recovery is basically dependent on what surgery we do. In most cases, the hospital stay is very short. So you take deep brain stimulation, a lot of people say, "Wow, that sounds scary. You're implanting electrodes into the brain." Yeah, we are, but we use a GPS system, where we create sort of a three-dimensional space using robotic stereotaxy and then implant the electrodes under general anesthesia and then these patients go home the next day.

Maggie McKay (Host): That's amazing.

Dr. Jeffrey Raskin: It is amazing. And it's not new, but it is something that we're doing here at Lurie Children's Hospital to treat primary dystonic patients and some secondary dystonic patients. So other surgeries like rhizotomies, for example, you have to open the CSF space, the cerebrospinal fluid space in the low back, and that sometimes needs to heal before the patient can go on. So the stay in the hospital for those patients is anywhere from two to three days before they progress to inpatient rehabilitation.

Maggie McKay (Host): When you have questions about a case, who or where do you turn?

Dr. Jeffrey Raskin: Well, I turn to my colleagues here at Lurie Children's. I have a great mentor, Josh Rosenow, on the adult side at Northwestern, and I talk to him as well for his opinion. We always contextualize individual patients within the world literature. So whenever there's a very complicated patient and it's not a hundred percent clear what to do, we consult the world literature. And of course, we should have relatively good understanding of what is emerging and what has good evidence. And then, ultimately, I have my own mentors throughout the nation at Oregon Health and Science University, in Texas Children's hospital where I trained, who I trust very much and call whenever I have a particular concern.

Maggie McKay (Host): So you have a great network. How has your field advanced from say 10, 20 years ago? What does the future hold?

Dr. Jeffrey Raskin: The treatment of pediatric patients with movement disorders has really gone back to the early 1900s hundreds. And it started with complete surgical disconnection, which led to sort of hyperpathic or too much pain basically in those patients and was ultimately abandoned as a surgical management therapy.

But then in the 1980s, the intrathecal baclofen therapy started becoming more popular, and that's sort of a neuromodulatory approach, which is not permanent but can have a tremendous benefit for these patients. The pump really has been FDA approved since the 1980s and has changed very little. And then, we added on other neuromodulatory procedures that have been FDA approved, like deep brain stimulation for dystonia. In the future, we might actually go back to one of the very effective therapies called pallidotomy, which is where we implant a stereotactic electrode into the globus pallidus, a nucleus that we think is dysregulated in dystonia and then create a little lesion and that is being described again as a retrofit for patients who are not responding to intrathecal baclofen and are not really good quality candidates for deep brain stimulation.

So I think the field is kind of progressing to revisit old therapies that we have abandoned in the past. But certainly, our improved knowledge of how to interact with the central nervous system in the form of programming and where to implant different deep brain stimulators, that's certainly evolving over time. I think the future will have both revisited and applied lesional therapy, which is an old-school type surgery, as well as an improved understanding in the future of deep brain stimulation, how to program those electro and where to put them.

Maggie McKay (Host): Sounds promising. What gives you hope for patients with the conditions that you specialize in?

Dr. Jeffrey Raskin: Yeah, I think that the main obstacle for patients with medically refractory hypertonia these patients that are not responding to antispasmodic medications and having continuous recurrent orthopedic surgeries because their muscles are too strong, I think the most hopeful thing is an awakening or an improved knowledge from referring providers and primary care doctors and families that neurosurgical procedures exist and they are safe and also effective at treating the hypertonia and ultimately improving the quality of life for these children.

I think education of caregivers, families and providers is most important way forward. There are already existing effective therapies and we just need to educate everybody, and provide an opportunity for these patients to come see us and get a surgical opinion.

Maggie McKay (Host): Dr. Raskin, thank you so much for sharing your expertise. You're doing such important work. Thank you for that. It's been very educational and informative and we appreciate your time.

Dr. Jeffrey Raskin: It was my pleasure. Thanks for having me.

Maggie McKay (Host): Absolutely. To learn more, please visit luriechildrens.org/neurosurgery for more information. Or to learn how to make an appointment, you can call 1-800-KIDS-DOC. And if you found this podcast helpful, please share it on your social channels and check out the full podcast library for topics of interest to you. This is Precision: Perspectives on Children's Surgery, the podcast from Lurie Children's Hospital. I'm your host, Maggie McKay. Be well.

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