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Interview with a Physician Treating IIH

We sat down with neurosurgeon Dr. Kyle Fargen to learn about his experience treating IIH.

Meet Dr. Kyle Fargen. He is a neurosurgeon at Wake Forest University and author of Idiopathic Intracranial Hypertension Explained: A Guide for Patients and Families. He has had an interest in IIH since his residency and has published many articles on it. His most recent publication, Intracranial Venous Hypertension and Venous Sinus Stenting in the Modern Management of Idiopathic Intracranial Hypertension, has shown that a neurosurgical intervention can help resolve IIH in select patients.

We had the opportunity to get to know Dr. Fargen, how he developed an interest in idiopathic intracranial hypertension, and some helpful advice on how providers can help patients.


What led you towards an interest in treating patients with IIH?

My interest in IIH began during my first real exposure to venous sinus stenting as a resident physician in neurosurgery. The case was so dramatic and interesting that we actually published it as a case report. A patient with IIH presented with very high intracranial pressures and papilledema which progressed to coma. We performed a ventriculoperitoneal shunt surgery however she did not improve. An intracranial pressure monitor was then placed and the patient continued to have severely elevated intracranial pressures even with the shunt in place. Imaging showed severe transverse sinus stenosis. Very few people were stenting for IIH at that time, much less in the setting of severe symptoms and a recent shunt surgery. We subsequently performed transverse sinus stenting, while the intracranial pressure monitor was in place, and watched the pressures drop immediately from the 60’s to 20 once the stent was deployed. The patient woke up from her coma and papilledema disappeared. It was incredible!

As a junior attending physician, I started performing my own venous sinus stenting cases and became fascinated with the disease process and physiology. It became very apparent that we, as doctors, actually knew very little about why vein narrowing was occurring in this condition, what was affecting the venous pressures we were measuring, and what was happening after we were stenting. Even now there are many things we do not understand. This fascination has kept me motivated to persevere while dealing with this challenging condition, which tends to take its toll on patients and providers.


What’s your current research focus in IIH?

My current research focus centers around understanding the ‘why’ of IIH. Animal studies and recent work we have done suggests that high intracranial venous pressures are the culprit and are driving the fluid pressure around the brain to be high. This high venous pressure is often made even higher by mysterious vein narrowing that seems to be instigated as a result of high fluid pressure. Our work focuses on trying to define what normal cerebral venous anatomy and pressures are so that we can understand what goes awry in the setting of IIH. Furthermore, strange things seem to happen when we stent people: some people develop new narrowing elsewhere, others seem to ‘uncouple’ fluid pressures and vein pressures, and some people have recurrence of symptoms even though vein and fluid pressures are lowered. We won’t have a good grasp of how to really help people with this condition until we can wrap our heads around what is happening and why. My current research is aimed at slowly chipping away at these knowledge gaps.


What is your philosophy for treating patients with IIH?

My personal philosophy centers around providing patient-centric care that addresses the needs of the individual patient. Patients with IIH are suffering greatly. This disease seriously impacts functional capacity, the ability to be a parent or spouse, to stay gainfully employed, and to enjoy life.

To be blunt, many doctors hate taking care of patients with this problem and routinely ‘blow off’ patients who are suffering with debilitating headaches, dizziness, and brain fog. Many of these doctors only become concerned and escalate care once visual compromise or papilledema is present. I personally think this is the wrong approach. We know that the symptoms of elevated intracranial pressure can be debilitating and awful even if papilledema or vision loss aren’t present.

Failing to factor the severe daily suffering of patients into the equation is, in my view, a miss-step. I try to let the patients decide for themselves how aggressive they want to be. I do my best to provide my interpretation of the potential risks and benefits of the different treatments I perform, like venous sinus stenting or shunting, and ultimately view the decision to pursue one of these treatments as more the patient’s than my own. I rely on both objective and subjective data from tests to help guide this decision process. Ultimately my job is to help people make decisions as to what is right for them based on the degree of impairment in their quality of life, while keeping patients from making rash or bad decisions. On paper this sounds like a challenging process but in reality, once you listen to patients and let them be heard, often the decision-making is actually straightforward.

Patients must have the expectation that this condition will be chronic and ideally should be motivated to improve their general health and wellness over the long-term by managing the things they can control.

What is the most difficult part of treating patients with IIH?

IIH is a chronic, relapsing condition with no silver bullet cure. Many of the treatments we perform for this condition, such as medications, weight loss, or surgical interventions, result in temporary or marginal improvements in overall symptom burden. In my practice, many patients that have lost substantial amounts of weight with bariatric surgery continue to have headaches. With shunt procedures, ventricular collapse routinely occurs within the first 3 months of implantation resulting in less flow through the shunt than we would like, oftentimes resulting in recurrence of headaches. In my own series, roughly 60-70% of patients that have been stented develop recurrence of symptoms after stenting even in the setting of lower intracranial pressures. The largest studies looking at patients treated with stenting suggest wildly better numbers; I would argue that this data is simply incomplete and incorrect. Anyone who treats enough patients with this problem understands the shortcomings of the treatments we currently offer. We don’t really understand why patients tend to have symptom relapse, but it is very common. Many patients, but not all (thankfully), have a honeymoon period after treatment, only to find themselves back in my office 6 months or a year later with recurrent headaches that impair quality of life. Other conditions that we treat, like brain aneurysms, we surgically cure the aneurysm and the patient no longer needs to worry about this issue. IIH is not one of these conditions. Patients must have the expectation that this condition will be chronic and ideally should be motivated to improve their general health and wellness over the long-term by managing the things they can control: eating healthy, staying active and exercising as tolerated, maintaining a healthy weight, using a CPAP machine if they have sleep apnea, and adequately identifying and treating associated conditions like anxiety or depression that piggy-back on IIH and make things worse. These lifestyle changes offer the best chance of symptom improvement over the long-term. Surgical treatments can and are expected to help reduce the burden of the disease, but they tend not to make it go away completely, and oftentimes their benefits are temporary. This fact makes being a patient challenging, but also makes treating patients with this condition particularly challenging for the specialist.


How can the medical community, or perhaps the NeuroInterventional community in particular, work to improve the lives of patients living with IIH?

I think the most impactful way for the neurointerventional and neurosurgical communities to improve the lives of patients with IIH is to re-focus on the personal, individual burden of the disease for a given patient. A paradigm shift is needed away from just treating papilledema or visual loss and, instead, towards treating the whole patient based on the individual symptoms that are most impactful for that person. In my view, listening and trying to understand the global impairment in functioning and quality of life for an individual patient, not just the risk to visual function, is the best way to effectively care for patients with IIH. While this may sound optimistic, this shift is already occurring: those of us in the specialty who are driving progress in IIH research are pushing for the use of patient quality of life and headache scales in not only day-to-day practice by physicians but also in clinical trials and studies reporting on the success of treatments. This will hopefully slowly transform the physician community at large into providing more patient-centric care aimed at improving overall patient quality of life.

Thank you, Dr. Fargen for sharing your insight and experience with IIH. If you would like to learn more, grab his book on Amazon!


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