Neurological disorders are wide-ranging and include many that are rare and therefore difficult to recognize and treat. Once diagnosed, the individual care plan often requires specialists from across several disciplines. It’s why Dr. Ketan Bulsara, chief of UConn Health’s Division of Neurosurgery, and Dr. Daniel Roberts, ear, nose and throat surgeon, started the Cranial Nerve and Brain Stem Disorder Program at UConn Health. They explain to Carolyn and Chris how the program harnesses UConn Health’s elite combination of experts across multiple specialties, making it a leader in the treatment of these complicated conditions.
Chris: Neurological conditions can be tough on a patient, from a health and quality of life standpoint, of course, but also because of the uncertainty of how and where to turn for treatment.
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With Carolyn Pennington, I’m Chris DeFrancesco. Brain tumors, blood vessel problems, acoustic neuromas, and skull base tumors are just a few examples of cranial nerve and brain stem disorders.
Carolyn: And these can be difficult to treat, often because they can be difficult to identify, requiring the services of elite experts. And today we’re joined by two of them. Dr. Ketan Bulsara, chief of UConn help’s division of neurosurgery and Dr. Daniel Roberts, ear, nose and throat surgeon who specializes in neurological disorders of the ear. Together they lead UConn Health’s Cranial Nerve and Brain Stem Disorders Program. Thank you for joining us. Now, what are some examples of cranial nerve and brain stem disorders?
Dr. Roberts: Commonly, we see patients with asymmetric hearing loss, and oftentimes that leads to a diagnosis of something called an acoustic neuroma. This is a benign tumor, otherwise known as a vestibular schwannoma that emanates off of the vestibular nerve, causing problems such as asymmetric, hearing loss, difficulty with hearing and balance and oftentimes ringing in the ears.
Dr. Bulsara: We treat things like trigeminal neuralgia, hemifacial spasm, vestibular schwannomas, within the specialty of the program, we treat patients who have difficulty with smell, vision difficulty, trouble with movement of the eyes, hearing difficulties, trouble swallowing, and again, other issues such as a general sort of balance issues, or any problems or any lesions that affect the brain itself, which could result in various manifestations, such as difficulty communicating or disorders that lead to seizures, or disorders that lead to weakness on half the body.
So again, it’s a whole gamut, and it’s difficult to limit what this program actually addresses, because what I can tell you is that it addresses every pathology one can imagine affecting the cranial nerves, the brain stem or the brain matter itself.
Carolyn: What are some of the symptoms of those disorders? Like if someone is experiencing dizziness or ringing in the ear, what are some of the common symptoms?
Chris: Yeah, how do they know they need to reach you?
Dr. Bulsara: Most of the patients we see are referrals to the program. They present with various symptoms. Like they may have difficulty with vision or they may have had chronic headaches or they may have trouble with balance, facial pain, or things like facial spasms. So there’s a whole host of symptoms, but I think what all of these patients share in common is that they have been identified as having a neurological disorder that affects their brain and may have imaging that supports that there’s either a lesion, such as a tumor, or there’s a blood vessel problem. Or oftentimes there may not be a specific lesion that we can target, but maybe just be some fine tuning that are our experts within our program can assist with. So again, it’s a whole host of symptoms that could lead to presentation.
Chris: Now Dr. Roberts, you specialize in neurological disorders of the ear, you’re an ear nose and throat surgeon. Why don’t you give us an example of the kind of patient you might see who would find his way to you?
Dr. Roberts: So oftentimes I’m contacted by outside providers for after they’ve identified a rare condition, such as an acoustic neuroma or a tumor from a cranial nerve. And those patients are best cared for in a tertiary care setting such as UConn Health. When that patient is identified to me or by an outside provider, or by a patient themselves or by another UConn Health provider, I will plan to see that patient within just a matter of days so that we can expedite their care and find a treatment plan that works best for them.
Carolyn: Why is it important to see them so quickly?
Dr. Roberts: Well, I think the biggest reason is for patients to know that things are moving forward and to have a peace of mind, because many of these tumors or conditions are benign conditions, but they can affect people significantly with significant symptoms. And knowing that things are moving forward for you in a time-efficient fashion, when you’re particularly not feeling well is critical for patients.
Carolyn: Right, because those symptoms can be really scary. The ringing in the ears or the dizziness–
Dr. Roberts: Dizziness, exactly, and so the bottom line is that we want to make every effort to help patients get to what they need in a very timely fashion. And for us, that’s a critical mission.
Carolyn: So walk us through, if a patient is interested or thinks they have some of these symptoms, what does a patient do? How does it work?
Dr. Bulsara: There’s a few ways to get plugged into the program. And again, it being a multidisciplinary program, we have involvement at all levels. We have our physical therapists. We have our nurses. We have our speech therapists. We have our support staff. We have radiology. We have neurology, neurosurgery, ENT. That’s just to name of few of the team that’s involved in this process. But to get access to the system, or to get access to the program, one can access it through any one of these components that make it up. So one may present with a specific disorder that may be associated with an ENT finding, and then gets plugged into the program because ultimately the patient would benefit from this multidisciplinary approach. So patients can either make direct self-referrals to the individual components that comprise this program, or they’re referred to us by their primary care team.
Chris: Both of you have been here for several years now. What is it that you saw about the medical landscape that got the two of you together thinking, You know what, we need to start one of these here at UConn?
Dr. Bulsara: What really stood out to me about the landscape of the UConn Health system is the tremendous world-class expertise that’s available in multiple different disciplines, within everything, but especially, the neurosciences. And in the time that I’ve been here, I’ve been working very, very closely with my colleagues in each of these different specialties, whether it be neurology, whether it be radiology, again just to name a few. And the concept of the Cranial Nerve and Brain Stem Disorders Program is sort of a natural extension of this collaboration that we already have. We’re already doing it. We’re already collaborating. It’s a formalization of a process that we had already initiated.
Dr. Roberts: One thing that I would add to that statement is, UConn Health is a tremendous opportunity for leadership in this region, and we need to serve as a place where complicated medical conditions can be sent and addressed and a way that is efficient and provides world-class care in this region. And when I had the opportunity to start this center with Dr. Bulsara, it was our opinion that we could be leaders in this way, in a unique way for Connecticut and for new England. So really creating an efficient way for patients to seek care for very rare conditions is something that we’ve strived for.
Carolyn: How has COVID affected you?
Dr. Roberts: Well, I think COVID-19 in many ways has opened up some opportunities for telehealth. In many ways, if a patient has a rare condition and maybe they live in another part of the state, or even in another state itself, we can provide a consultation in a way that wasn’t previously able to be done. So simply looking at imaging and then spending some time with a patient over the phone, you can create a care plan. That’s been something that’s been a unique for COVID-19.
Chris: And that saves maybe a step or two or an appointment or two, if before the person even physically comes to UConn Health to get that first in-person treatment, we’ve already kind of had a sense of the best direction to send that person because you’ve had that initial contact remotely, right?
Dr. Roberts: Exactly. And so if you have a rare medical condition that needs true experts and something that maybe isn’t available for you locally, it’s nice to be able to have a virtual consultation, where you can have a physician look at imaging, or they can spend as much time with you as you need, and they can really lay out of the pluses and minuses of different therapeutic modalities. And in that way, you can be very efficient with your time and get what you need in a very time-efficient manner.
Carolyn: And saves the patient a trip.
Dr. Roberts: Absolutely. And it’s also a safe way to see a physician.
Carolyn: Yes, in this day and age, yes. Now you’re both surgeons. Does the treatment usually require surgery?
Dr. Bulsara: It’s true, we were both surgeons, but our ultimate goal is to manage the patients in the most optimal manner for them. We actually only have to operate on a small subset of patients that are referred into the program. The vast majority of patients that are referred into the program are managed medically by an expert, a phenomenal world-class team of medical experts, who, again, work in this environment where the traditional silos have been broken down.
Dr. Roberts: Right. So we are surgeons, but we also, in many ways, my practice, the first thing I think about is trying to keep somebody out of the operating room. Medical management is utilized in every step and surgery is always a last, last option, when other medical opportunities are not available. And that brings in the idea of a consortium of different providers who can offer medical management. And in many ways, as a neurotologist focusing on the ear, many of the things that I do also involve medical management. So sometimes a patient with vestibular type symptomatology is best suited by going to physical therapy or to an active surveillance protocol where we simply do serial imaging of a rare condition. And in that way, we can be giving a patient the best care without operating.
Dr. Bulsara: Good point. What’s also important to know is, we have a symbiotic relationship here. I can’t say, and for good reason, I can’t say that, every single member within the team, all of us are focused on the patient, but I can’t say that we always agree on sort of what a patient’s presenting with and what the optimal treatment management is. But what I can say is that because we have people that are so thoughtful and so insightful in terms of the management of these individual patients and that we can have these discussions, patients can be guaranteed that their treatment is definitely personalized to them, and there’s nothing that’s not considered in terms of optimizing their treatment paradigm.
Chris: Because you have so many voices in the room.
Dr. Bulsara: We have a lot of voices, and those voices aren’t just physician voices. They’re voices that extend the whole spectrum of health care, whether it be from our support staff in the clinic, again to our therapists, to our nurses, to our speech therapists, every single member of the team is involved in the care of these patients and everyone’s input is considered. And again, that’s what makes us very unique. This multidisciplinary approach in which the traditional silos have been broken up in an environment of collegiality and comradery.
Chris: Dr. Ketan Bulsara, chief of UConn Health division of neurosurgery, and Dr. Daniel Roberts, ear, nose and throat surgeon specializing in neurological disorders of the ear, before we go, what else should prospective patients and referring physicians in the community know about this?
Dr. Roberts: I think one of the things that’s most important is knowing how to access us, and on our UConn Health website, patients can essentially create a portal where they can access us directly. And in that way, either a provider or a patient themselves can expedite their care. And so we want to serve as that resource for the community in Connecticut and new England.
Dr. Bulsara: I think what they should know about is, we’re grateful and appreciate the opportunity to work with physicians all over the state and beyond in terms of managing these patients. We view things as being very collaborative, and the same extent of collaboration that we have within our health system. We extend that collaboration to our referring physicians also, because we consider them as colleagues who are actually helping us also manage these patients. And I truly believe that the more voices, the more perspectives that are involved in terms of managing individual patients, I think lead to improved outcomes. And so, just want to thank those who work with us in the care of these patients.
Chris: And that’s our time for today. For Dr. Ketan Bulsara, Dr. Daniel Roberts, and Carolyn Pennington. I’m Chris DeFrancesco. Thank you for listening to the UConn Health Pulse. Be sure to subscribe, so you can catch us next time, and please share with a friend.