Transcript
Jodi Ettenberg: Everyone, we are pleased to be finalizing our talk today with a better understanding of barriers to care in spinal CSF leak. After this talk, there’s going to be a general Q&A with all the physicians from today. We’ll be chatting about all the topics, not just the ones that were limited to the earlier sessions, which are really informative. I’m joined by Dr. Andrew Callen, neuroradiologist at the University of Colorado, director of the CU CSF Leak Program. My name is Jodi Ettenberg. I’m a chronic PDPH patient who sustained a leak from a lumbar puncture in 2017. I’ve had four rounds of epidural blood patching, and they haven’t held, although I was sealed for eight months, which was wonderful. I’m still leaking today, and this is the first live talk I’ve done with a leak. So please bear with me if I have any brain fog or I need to look at my notes. Like the other moderators today, I am a volunteer on the board of directors for the Spinal CSF Leak Foundation.
Dr. Callen: I’m really excited about this conversation today. I think it really shows the uniqueness of this conference. In this final session, we’re going to try to explore some of the barriers to care in spinal CSF leak, but not through a lecture with slides, but instead via a dialogue between two perspectives, that of a patient suffering from this condition and that of a physician trying to treat it. We all know that spinal CSF leak is a profoundly disabling condition that challenges nearly every part of the health care system, in addition to people within it.
Jodi Ettenberg: Many patients struggle for years before they’re able to get referrals or treatment or care. And even if they’re able to access that specialty care, we know there’s very long wait lists in order to get seen. Patients aren’t always believed, and many of them are misdiagnosed, and treatment is expensive. Treatment is time consuming, and recovery isn’t a linear process, and that’s something that is often hard to explain.
Dr. Callen: On the medical professional side, there are lots of barriers too. Many of us as physicians face administrative, financial, or institutional pressures that may be hard to see, but that make it very difficult to deliver the care that we know our patients need. And believe it or not, we also face emotional burdens, which don’t really get talked about in scientific or medical conferences.
Jodi Ettenberg: So, for this final talk of the conference, we’re going to have a conversation and basically look at how each of these groups of people, patients and physicians, are bumping up against the constraints of the modern medical system. And to kick it off, I’d like to ask you, Dr. Callen, one of the questions we received the most from patients is about the long wait times to get care. Like I referenced earlier, at your IH 2025 talk, you talked about something I didn’t know about, which was that the billing for dynamic myelography doesn’t actually exist. You have to use ICD-10 codes for a different procedure because there is no billing for the procedure that you’re actually doing. Does this impact the wait times? What other things that patients may not know about are impacting the wait times? Is it that there’s too many patients? Is it a staffing issue? Is it something else? I’d love you to give us all some sort of insider talk about what’s behind this.
Dr. Callen: Yeah, I think it’s a good place to start. I think, one way when I think about this question is just thinking about the arc of my career doing this work and sort of the challenges I faced from the beginning until now. And in the beginning, it was as simple as, I need more scanner time. I don’t have enough time to actually take care of these patients, enough slots to do the treatments and tests that I want. And then eventually advocating for, I need clinic time, just simple resources and spots for people. But as that has evolved, and now I’m able to get those slots, it’s become much more nuanced and complicated. And a lot of it relates to what you mentioned. It’s not enough that I just have slots to do myelograms and patches, and that I’m lucky enough to work with a very good neurosurgeon who wants to take care of these patients, but there’s an entire systems layer here that is preventing us from doing this work the way we want to, and I think preventing more doctors from doing this work.
I think some of it relates to the billing and coding. I mean, we aren’t able to account for the types of procedures we’re doing, and that goes on both the radiological side and the surgical side. The sort of codes that we use for doing complex myelography are the same ones that are used for a standard myelogram, which are very different in terms of time intensiveness. And same thing for my neurosurgical colleagues. I mean, they’re often using codes that don’t reflect the complexity or nuances of the procedures they’re doing.
And so I think that overall the health care system coming to understand that this disease is one that requires these specialized procedures, treatments, and tests that need their own recognition would help more people do this work. I mean, for me, from my perspective, I’m lucky enough that my department is willing to in essence sort of subsidize my time doing this, but it sort of is almost a money loser for a radiology department to take a radiologist out of the reading room and have us doing this work, even if we want to do it. So that is a big challenge.
And I’d say the other one is that we just need more people to do it, to be aware that they could have a profound impact on this. We need, you know, it’s not all just nuances in billing, but simply an availability of resources. And I think that those two kind of go hand in hand.
Jodi Ettenberg: I’m curious if I could give you some magic wand today and say, okay, Dr. Callen, what are the one or two big things that you think would have the biggest impact on the system itself? Like if you could wave that wand, what would you change first? Is it that you have adequate and accurate ICD-10 codes, or is there something else that you think would be really impactful for patients in the field?
Dr. Callen: I think that, I mean, yeah, I think that I don’t want it to all be about dollars and cents and money. I think that is a big part of it, and it just is a reality of it that we need to recognize if we want more people to do this work. But I think that another huge one is if we could just, with that magic wand example, create the sort of multidisciplinary care structure that we see in other diseases. You know, when we think about a patient with cancer, for example, where we have established systems in place when that patient is diagnosed, where they are seen by their oncologist, they’re seen by the surgeon, they’re seen by potentially mental health services that they’re needed for, for known complications relating to that treatment. There may be pain physicians involved, as well as social workers, nurse navigators, case managers who could all help them with this.
It’s very hard if you’re a physician trying to do this, if you’re very passionate about it, trying to do it alone on an island. It gets very challenging. And if I were able to do one thing, it would be able to create this sort of multidisciplinary collaborative model that existed within these systems, that was the first thing the patients saw, instead of just, oh, there’s a radiologist in my community who will do blood patches. I think that makes it incredibly challenging.
I think that kind of leads me to my first question for you. We were talking about billing and sort of this from a physician perspective in terms of a barrier, but I hear patients talk to me about, oh, my insurance wouldn’t authorize this, or they denied this. And I think about, frequently, my patients having to pay out of pocket to come see me. I’m curious to know, from the patient perspective, how does that shape your experience? Forgetting even about the symptoms that we know are there, but like these systems-related issues.
Jodi Ettenberg: Yeah, I think I talked about wait times in that question with you. Waiting really defines the patient experience in many ways. And I know you said forget about the symptoms, we want to focus on the systems, but I think the compounded factor of the symptoms plus the systems is part of what makes this experience so hard for patients. There’s so much waiting for the referrals, for your records to arrive, for you to resend your records and them to arrive when someone mistakenly loses them. When you’re hoping for pre-authorization and your insurance, it’s like the day before your procedure and it still hasn’t come. And for the treatments themselves, and then the recovery, where it’s not like breaking a leg, where there’s a lockstep recovery process, even if it might have variation.
There’s really just a lot of questions on the patient side of how much are you willing to fight for your care, or how much debt are you willing to be able to go in for the potential of getting better, because there is that level of uncertainty for some patients. And within the states in America, there’s working within the bounds of the insurance system, which is very complex. Their policy may not cover a specialty center, and then what happens? You’re trying to get there, you’re told no, you can’t just remortgage your house, although some patients do, right, to get to care. And then while they wait, there’s some people who lose their jobs because they’re basically so debilitated by spinal CSF leak. And for those who have insurance attached to their jobs, it’s another impact in terms of the system of how do you get care then if you’ve lost the insurance that might have covered it?
I think another important aspect is that for some patients, their policies go by the reports that they say. You spoke earlier about what happens when someone gets a report that says you have no signs of a leak. From a patient’s point of view, it’s like the luck of the draw. Who is going to be taking a look at our imaging, and will they have the knowledge about those subtle signs that are often misinterpreted, or the sort of things that may not generally be known of the signs of a spinal CSF leak?
If the read is normal and insurance says, “No, we’re not going to fund your exploration into a condition that we don’t think you have because your imaging here says that you don’t have it,” then they’re really stuck, and they can’t self-refer necessarily. Some can, some can’t. They can’t afford it. Some can, some can’t. But ultimately, access to care is life-saving. We’ve very sadly seen patients take their lives in the last few years because of a lack of access to care.
And all of this waiting that I’m talking about – it requires a huge support system, and that again is not something every patient has, right? Not just to physically get to the appointment, but also to be there for the treatment, to manage caregiving when you’re fundamentally disabled by spinal CSF leak. For the parents, to be able to try and figure out what happens with childcare when you’re recovering, to try and implore your families. There are these restrictions. We’re not making it up. We’re not being lazy. We’re putting these restrictions in place because we were told to to protect the healing of our dura. There’s so much support that’s needed. And I think the system that we’re talking about makes it harder for patients to manage all of that together.
I’ll mention my case. It was a little different than the average patient because I was living in southern Mexico. I had left Canada in 2001. I was not a resident, so I wasn’t covered by the Canadian system. I wasn’t covered by anything in the States. I just had travel medical insurance. But I got my LP that caused my leak in the States. And it was my first foray into navigating this Byzantine system that I had previously never had to deal with. I worked in the States for years, but I never, thankfully, had any complex issues that required it. And the exhaustion of trying to manage that while dealing with a condition that, out of nowhere, just took everything in my life that made sense away. And you don’t understand what’s happening in your body.
When my leak happened, it happened in the States. My parents came and drove me back to Canada. I was basically living in their basement. And I then got a bill for $100,000 from that insurance for the procedure that caused my leak, for my LP. So I had to spend months trying to appeal that at a time where I was also desperately trying to get care. I was refused patching as well and trying to get to specialty care so I could get patched, while really just trying to fight for existing at that point, is how it feels. I was in so much pain and very scared, and it was just incredibly overwhelming to have to then manage this systems problem, this administrative issue, the insurance, to go into that much debt for something that had completely debilitated me.
It takes a lot to keep fighting. And I think it’s the same for many patients. That’s just my example with my life, but we hear from patients all the time where it’s the same. They’re desperate to get care, and the added burden of insurance and the things that you’ve described, it really shapes the patient experience.
Dr. Callen: I think that’s really important for us to talk about and acknowledge because we walk into that clinic room or that procedure holding room, and the patient’s in front of us, but we have to understand what that entire, what they’ve been through to get to that point. And even though that’s the beginning of it, perhaps, for the doctor, it’s not the beginning of it for the patient, and having that perspective is really important.
And it makes me think about what are the other things, or I guess what do you think is something, one of the one or two most important things that physicians don’t understand about this process of getting care, of accessing or finally accessing that care that you need?
Jodi Ettenberg: I can think of a, I know we’ve limited in time, I can think of a few. I’m going to go with three.
I think the first one, the first one is really just the exhaustion, right? You all know this as physicians. You see it in us when you see us. But it is so exhausting to be in pain all the time. When I was a lawyer, when I quit my job after years of practicing, I was like, I am never billing in six-minute increments again. I never want to do it. I never want to measure my time so granularly. But that’s what it’s like to have a leak. The second that you’re upright, the clock starts. And everything you do is calculus.
I’m doing this talk today. I decided to do it standing instead of lying down. I couldn’t shower today. I didn’t shower yesterday. I had to do it earlier. I couldn’t make my own food today. Everything is really just this calculus of existing in the context of your limited uptime. And it’s something hard for healthy people to manage, the insurance systems, but when you’re also leaking and you’re advocating for your own care so heavily, it’s exhausting.
The second thing, I’m a writer. I think a lot about words, and some of the words used in the field directly impact the patient care experience. You talked about headache and how it’s used, but it’s sort of one aspect of having a spinal CSF leak, and not every patient even has it. We as patients have to use the terms that medicine uses. That’s sort of what we need to do to try and make things happen for ourselves. But headache is so profoundly reductive for the symptoms we experience. It’s just a part of it. There’s so many other neurologic and other symptoms that we have. Headache is something that some physicians on the primary level use as almost a bludgeon to say, well, it’s just a headache, you’re anxious, you’re stressed. It can’t be from a leak because they just use it as a way of telling us it’s not that. And I realize the International Classification for Headache Disorders uses it. It’s used in the literature. I’m not sure if this is a fixable problem, but I think it makes referrals harder when that’s the primary term that’s used, because there’s so much more impactful symptom profiles that are part of the condition.
And on the words front, and this may be a little controversial. I think one of the things that would make a huge difference to patients in how they get care is for the patients with SIH who have negative imaging, that we can see a physician who is, it’s not my type of leak, but a patient can see a physician who acknowledges the limits of technology and acknowledges the limits of the field when having a conversation if the patient has negative imaging, because we know that the field continues to evolve. We’ve heard about all these new exciting things today. Doctors Schievink and Madhavan talked about new insights into lateral tears. When I had my leak originally in 2017, I was told by a specialist, like, “Oh, there’s this new type of leak called CSF-venous fistulas. It’s very rare,” and it’s not. Now it’s extremely common in the SIH group. What in six or seven years are we going to look back on and say, like, “Oh, we just didn’t know,” or “We just didn’t know how to look for it,” or something, right?
And I don’t know. I mean, as a physician, you would know far better than me, but I think that it would be incredibly impactful for patients to be able to go to that appointment and be told, like, “Hey, we can’t see this on your imaging. You may or may not have a leak. We think your symptoms are not incongruent with a leak, for the patients that fit that profile, but there are these limits of technology, and in a few years maybe that’ll change. Right now, you’ve sort of hit the end of the road with us.”
I think patients would be far happier to be in this gray area than just be told, you know, you’ve got a secondary diagnosis. And I realize that’s not every image-negative SIH patient, but for those that it applies to, what a difference it would make to them and their validation, but also to their loved ones who have just spent however much time or money rearranging their lives to get to that appointment, if it could be couched in a level of more uncertainty. Like, you’re not crazy. It’s not completely out of nowhere that we think you have a leak, but we can’t help you right now.
And I think the last thing would be this condition just really forces you to reckon with who you are as a person. Even if you’re not in the sort of waiting-for-medicine-to-evolve category like I am, it still changes you to have a spinal CSF leak. One day you’re fine, and the next day you can’t stand up, and nothing in your body makes sense. I’ve written about it as being zipped up into someone else’s skin. I don’t know how, I’m supposed to be a words person, but I don’t know how to better describe just the horror of experiencing spinal CSF leak and that uncertainty, and just that whole dark night of the soul aspect of it. I spent a decade traveling and eating my way around the world, and then suddenly all the things that I loved, that I identified with, that made me who I thought I was, were gone. When I realized, you know, this is a chronic problem, I can’t go back to any of that. You ask yourself, what is my worth as a human being if I can’t be the person that I thought I was up until now? And obviously, you know, it’s a far deeper discussion, but I’m certainly not the only one who asks themselves those questions. And I think while it’s not something that physicians ought to be factoring in necessarily, it is a huge part of that process of getting care, especially for chronic patients, where it really affects fundamentally, you’re having an existential crisis in your head when you’re seeing those patients, basically.
Dr. Callen: I think that’s all very insightful. I mean, I think as physicians, or working in the medical field, we could definitely think about what it would be like, for example, to not be able to be a doctor anymore. When you go through so many years of training, it becomes your identity. To have that stripped from you, you know, what would it be like when I’ve spent, you know, 15 years of my life in training preparation to be something? It’s what I identify with, to no longer be able to do that anymore. What would that be like for me? I think that is something that we should be able to identify with to a certain degree, and I think it’s important.
Jodi Ettenberg: And I appreciate, you know, it’s not part of the normal questionnaire you would ask patients, but I do think it is not unique to me. There’s a lot of patients who struggle with that.
I do want to ask you, back to trying to get care. We touched briefly on the idea of access due to lack of knowledge at other sort of non-specialty levels. I had a patient I heard from this week. She was an SIH patient. She went to several ERs in her state, and each and every one of them said, “It can’t be SIH because you didn’t have trauma to your spine.” You know, we hear from PDPH patients, myself included, “It’s self-limiting. You don’t need a blood patch. It will absolutely get better on its own.” How do we fix this issue, fundamentally? I understand it’s not something we can do today in the next, you know, whatever amount of minutes, but how do we fix this issue systems-wise to ensure that at that kind of gatekeeper level there is better understanding of spinal CSF leak?
Dr. Callen: Yeah, this is such an important point. I was actually just talking to my friend and colleague, Dr. Carlton Jones, about this, but I think that we get so, you know, those of us in this world, whether it’s on the patient side or the physician side, we love sort of nerding out about, or sort of getting into the nitty-gritty details, the advanced scientific nuances of this, but there’s this fundamental level of care that is not being given, this basic level that we can be giving now.
And it is, you know, I talked about this in Amsterdam. During our first Bridging the Gap conference, I was literally sitting in that conference room when something very advanced and nuanced was being discussed. I was listening as an audience member, and I got a message through the electronic medical record that they wanted to transfer a patient to us who had an accidental dural puncture during a labor epidural. They said that anesthesia wouldn’t perform a blood patch on her because her spine MRI showed an epidural CSF collection, which of course, you know, what would be expected if you imaged somebody in that situation. It just made me realize, wow, I mean, there is such a profound lack of understanding about this condition that even if we didn’t make advances in detection of CSF-venous fistulas or these more obscure things, if we just got a basic level of understanding out to patient-facing health care providers, we would help so many people.
And I think that we’ve done a very good job in the radiology community in this way. It’s on our boards now. A lot of times what I get told by trainees is, “Oh, I saw a CSF leak question on my boards,” or, you know, at our radiology meetings it’s a thing that we love to have sessions on. But I think that the next step is really in primary care, ER, for example, people where this isn’t what’s necessarily suspected up front. Maybe the patient has enough information or has done enough reading or self-advocacy that they could suggest it, but enough that the treating provider who’s screening them clinically is the first sort of contact with the medical system, could not only have a basic understanding of it, but also an understanding of the ways it could present that aren’t the way it’s classically taught in medical school. The ways in which these patients should be triaged and plugged in to get them on the right path, because if that doesn’t happen, then it doesn’t matter how many neuroradiologists like to sit in a room and show pictures of photon-counting CTs with little tiny CSF to venous fistulas, because we’ll never get to see those patients. We’ll never get to try to help them.
So I think this is the next level of advocacy and this sort of clarity. But from your perspective, or the patient community’s perspective, what do you see as the most common barrier? Is it being taken seriously by clinicians? Is it getting a timely diagnosis? Is it being forced to go down a migraine pathway for ever so long until they prove that none of those medications work? What is it from the patient side?
Jodi Ettenberg: Yes. Yes. It’s all of those things. I would say all of those things and more. You use the word headache. I mentioned that before, and I’ll bring it up again. It’s part of the composite of symptoms, and I think it results in us not being taken as seriously, unfortunately. The lack of knowledge at a primary care level, and I’m not just talking emergency care or PCP levels, but even neurology. Physicians like you said, they aren’t aware of the clinical variation in presentation, and it leads to these refusals, or a refusal to even do diagnostic testing or evaluation. PDPH patients, again, myself included, were told you can’t have a spinal CSF leak because your MRI is normal.
Well, we’ve just heard Dr. Beck reiterate what we’ve also heard at many conferences past, which is that, on the whole, PDPH rarely has signs of a leak on their brain MRIs. In my case, a neurologist told me I couldn’t have a spinal CSF leak because I wasn’t leaking fluid from my nose or my ears. I mean, that’s just basic. But that same neurologist was the gatekeeper who almost made it impossible to get specialty care. They refused to order an MRI with contrast so that I could get to a specialty center, and I had to get really really creative and beg a private MRI center to give me an MRI without a requisition from a local doctor. In Canada, it’s not easy to get a second opinion. That was almost like a full block to my secondary care. And I know it’s very hard to stay up to date on literature. I know physicians are exhausted. I certainly am, I’m sympathetic to that. I just don’t know how we fix it, because those are the physicians that are these gatekeepers and blocking us from getting the referrals that we desperately need.
I think you mentioned not really being believed. A big barrier to that, I would say, is the fact that it’s an invisible illness. People are like, “So Jodi, are you sure you’re sick? You don’t look very sick.” I’m like, I’m pretty sure. I’m in a lot of pain right now, but I’m standing up. I put on mascara. I brushed my hair for you all, and I don’t look—what does that mean, looking sick, right? If we were all bleeding out of our eyeballs as part of this condition, maybe we would be taken more seriously and more timely care could occur. I don’t want that for any of us. But I can’t tell you how many patients see physicians who tell them, “Well, you can’t have a leak because you’re sitting here having this conversation with me. You would be essentially on your deathbed if you actually had a spinal CSF leak.”
And I think part of it is that there’s this lack of understanding of what leaks look like in patients. And part of it as well is that women, a lot of women have this condition, and there’s certainly research to suggest that pain from women is not taken as seriously in other fields, and that may apply here. And I think the disbelief that we get over and over is insidious. Not just because it really impacts our ability to get timely care, but eventually I think if enough people with authority tell you that what you’re feeling in your body isn’t true, you’re going to start believing it. It doesn’t matter how stubborn you are, how smart you are, how determined you are. You may be a strong person, but you’re going to start doubting yourself.
And you start going like, “Well, maybe I was just stressed. Maybe those big needles in my spine had nothing to do with the fact that I can’t stand up for long since I got that procedure.” The self-doubt of those things really compounds the ability to get care and the emotional toll, because you stop advocating to get that care. Your family is like, “Well, your physician said your imaging is negative. You probably don’t have a leak. Why are you still chasing this elusive thing?” It really echoes in many different ways, and it impacts their confidence and their ability to get the care that they need.
Dr. Callen: Yeah, that really resonates with me. I mean, I think I’m thinking about times that I’ve walked into a patient’s room, and I sense how nervous they are to talk to me, and almost like they’re having to present a case for themselves to prove that they’re not crazy or something. And this is even for people with grossly positive imaging that has simply been misinterpreted. And I just feel horrible that we failed to this degree, where on top of the physical and mental and neurologic suffering a patient is undergoing, that they are, on top of that, having to make a case for themselves or sort of acknowledge, you know, what they’re saying sounds, “I know this sounds crazy, but,” you know. And it just makes me very sad that we’re at a place right now where that is an added burden placed by the medical community on top of this already very terrible disease.
Jodi Ettenberg: Thank you. I think patients will really appreciate hearing that, and I know you’re not alone in thinking it. It’s just something we don’t usually talk about in this kind of more casual way in a public venue. I would love to know as well from your end, and you can speak to yourself, but this is a question I’m curious about generally, in terms of emotional toll as a physician. What’s it like working in a field where the patients are suffering tremendously? This is the bulk of your medical practice, and you see these patients day in and day out who have these high levels of suffering. How does that shape you over time? How does it change your perspective, if at all, in terms of your day-to-day life outside being a physician as well?
Dr. Callen: Yeah. No, thanks for that question. I think that it’s an important one to talk about, and it’s one that is not unique to spinal CSF leak. I think physicians across all categories.
I mean, I go to the children’s hospital once a month, and I look at the patients there, these children who are suffering from horrible diseases, and I think to myself, oh my gosh, imagine being a pediatric oncologist, facing this degree of suffering. How do you do it every day? And clearly we need people like that. We need people to be passionate in that work. And I am somebody, if you know me at all, I’m very passionate and excited about this work. And I constantly feel the balance between becoming completely engaged, making the most of, giving the most available humanity I have to my patients, and then not letting myself burn out by getting so involved that I too become emotional, right?
I need to be there and be strong for them, be objective for them, guide them through this, while still caring for them. And I think the way that that manifests is in a lot of different things. I think that I can only speak for myself, but I bet you that a lot of my colleagues feel similar things. When I have a patient who has waited months to see me and has gone under financial hardship, and then I perform a myelogram on them and the myelogram is negative, and I’m going to tell them the next day that I didn’t find anything, I’m very stressed about that. I’m thinking about that patient before I fall asleep at night and really worried and scared that they are going to be upset that I’ve failed them, et cetera.
And I think that what has been incredibly profoundly humbling for me, and sort of teaching for me, is that it’s not the case usually. My patients, when I have that conversation with them, and I try to frame it in the way that you mentioned, that we didn’t find anything, but this doesn’t necessarily mean that there’s nothing there. This is one part of the overall picture, and technology is where it is, et cetera. How much they appreciate the transparency and just the fact that I am willing to sit with them and have that conversation. It really taught me a lesson to get out of my own head about this. This isn’t all about me. This is the person in front of me who’s sitting there and suffering with this condition. And I think that we’re all human beings, and we can see each other’s humanity.
And if you can make some of that available to your patient, that they will generally see that, and just being willing to listen to them, to shoulder some of that with them, to tell their loved ones that what is going on, that what they’re feeling is not just sort of all in their head, gives them some validation or some acceptance. But you know, I don’t think we would be wrong to say that doing this work isn’t also hard for us on the physician side too. We want to be healers. We want to fix the problem. There’s no better professional satisfaction I have than finding someone’s leak, especially when the brain imaging was negative. I seriously get so much joy out of it. But that can’t be met with the equal and opposite reaction where I’m devastated emotionally if I don’t, right? That’s not about good service to my patients.
So this is, I think, something that we all have to deal with as doctors in general, as healthcare providers in general. But I think where it lends me to think is sort of reflecting it back to the patient’s side. What is the emotional experience, or psychological emotional experience, of finally having that beginning of that doctor relationship, right? You finally meet your treating doctor. What is going through your mind, and what does it represent for you emotionally, in terms of outside of the nuts and bolts of what it took to get there that we kind of already covered? I’ve already mentioned that it’s profoundly upsetting for me that patients seem like they’re so nervous to prove their case or something. And I just really want to hear more about that and what that perspective is from your side.
Jodi Ettenberg: And we’ll answer that in a second. And please forgive me for rerouting you for just a second, but I was wondering, are there therapists who specialize for physicians? Are there therapists out there that have a medical background that could help with that emotional aspect of dealing with conditions like this? I’m sure physicians deal with conditions with high morbidity, and that’s something they might seek out. Is that something that exists?
Dr. Callen: Yeah, I mean, I think that there are a subset of mental health professionals who do this work, not only with medical professionals, but with trauma in general. And it’s not limited to medical practice. You think about people in the military or people in the police, for example, who have to witness horrible things, or just human suffering in general, right? And I think that I’ve met actually some very interesting, very smart and interesting people who do this work, and I think it is something that we should talk about more as physicians.
I think there’s a big stigma in healthcare about physicians accessing mental health services, admitting that there’s something weak or wrong with you. All of a sudden now I’m sort of saying, well, I shouldn’t be a doctor because I’m not this perfectly strong person. I think that that is another barrier that we could spend a whole session on, but is absolutely something that needs to be recognized and sought more.
Jodi Ettenberg: And that toxic mentality is certainly not limited to the medical field. It is the same adage that exists, like there is strength in vulnerability. It does make you stronger to work through that stuff. I know a lot of patients have benefited from modalities like EMDR, for example, where you’re approaching things from a specifically trauma perspective, whether it’s the moment your leak happened or a treatment that happened to you, or even just processing everything. And I’m sure that physicians would benefit from that if it’s a modality they’re interested in. But yeah, thank you. I was curious if that existed.
To answer your question about what we’re feeling when we sort of end up landing in front of you finally at the sort of apex of this diagnostic push, I think as we’ve already talked about, there’s that big uphill battle to even get care and to get to you. So there’s this moment of deep relief that we’re finally in front of you. We’re finally having the conversation we’ve been wanting to have. I felt really, really nervous for my appointment, and I know it’s the same for many patients. My specialist physician was kind and funny and compassionate. I have no complaints at all.
But before the appointment, I was genuinely losing my mind. I treated it like it was a job interview. I practiced with friends. I made lists. I read forums. I read studies. Everything I could get my hands on, I tried to get my hands on, because I was so terrified. And I felt ashamed of it at the time. I kept telling myself, you were a lawyer for years. You traveled the world by yourself, small enough to fit in a medium-sized suitcase. Why are you so scared of this one appointment? But I genuinely was shaking like a leaf when I first met with my specialist.
And I think part of it, in my case, is that my leak itself was iatrogenic, and I had never heard of spinal CSF leak before I sustained one. I genuinely had no idea of all the complexity. I was just told, you might have a headache and it’ll go away. That’s the only complication. So I think there’s that fear, if your leak is of an iatrogenic source, that any sort of further treatment or anything could be this other compound, exponential problem, which thankfully wasn’t the case. But I definitely was scared when I was there.
And it does feel like everything is riding on this appointment. It’s like this fulcrum point that’s funneling in for you. And there’s that relief, but it’s also like everything is riding on this. You fought to get there. Will this doctor take you seriously? Will a leak show? Will my family believe me that it was worth all the effort to get there? All of that hope and grief and stress, it funnels in on that appointment. And that puts a tremendous amount of pressure on you.
And I think what patients have had to learn on their way to seeing specialists like you is that you kind of have to be the perfect patient in order to get successful referrals to care. You have to be informed, but you cannot be too informed. Don’t be too informed, because then you’re just a difficult patient. Or you have to be careful, and you have to be able to communicate, but you can’t communicate too well, because then you don’t seem like you’re sick enough to be leaking.
You know, there’s this tiny, tiny tightrope that you’ve had to walk on just to get in front of you at all. So I think, I’m sure your patients feel very relieved. Like you said, they’re not upset when you give them these conversations. They’re just happy that someone takes them seriously, someone is believing what they’re saying. And it sounds dramatic to say that everything rides on this, but it genuinely feels that way when you’re putting everything you’ve worked so hard for, for all this time, dealing with a condition that totally changes the way you interact with the world, not just identity-wise, but physically. You can’t do anything you usually did. It’s such a terribly isolating experience.
And I think being a leak patient, it’s a level of isolation that I never experienced previously. I have other comorbidities. Nothing came close. But also, you know, you’re just in this bubble of pain. And I think that’s why meeting another leak patient, which I’ve had the pleasure of doing over the years here and there, it’s just this soul-soothing experience, because there’s just no one else who gets it. And I always say, terrible condition, amazing people. I’ve had the honor of being friends with some incredible people from the spinal CSF leak patient community.
And being isolated is not limited to spinal CSF leak. I’m not suggesting we’re in this special category. There’s a lot of conditions that are profoundly isolating. Anything that takes you out of normal life and puts you in bed all the time, unable to participate in normal living, that’s going to feel lonely, deeply lonely. But I think the difference is exactly what you said earlier about the multidisciplinary sort of support care. In our field, there’s just no ancillary services. There’s no, we aren’t assigned a therapist. We aren’t given a dietitian to help tissue healing. We aren’t given a patient navigator, a patient advocate, or helped to be funneled through that system. We’re sort of just floating in the breeze, trying to fight for our own care. So it feels extra isolating.
And I know everyone in the field is working on all those things. It’s not like no one’s aware of it, but I think we’re trying to do what we can on the Foundation side. All the physicians are also trying to do something about this problem, but for now it’s not there yet. And that isolation, in addition to everything else we’ve spoken about today, I think really contributes to that emotionality that you’re talking about seeing in your patients when they’re sitting in front of you for the very first time.
Dr. Callen: Well, I mean, I think I have like a million more questions and things I want now that I want to talk about. I think this conversation should honestly be hours long, but we’ve lightly touched on some of the topics. I think that we’re good. I mean, I’m really glad that we’ve had this conversation. I think a good sort of general question for all of us to think about is, where do we see the greatest potential for collaboration between healthcare providers and patients to improve the delivery of care and mutual understanding? I think that these conversations are a good start. I think that this conference is a good start. It really was the driving sort of principle, the animating principle behind it. But I think one thing that I could very, very much take away is that trying to fix these issues only on the physician side, just from that siloed perspective, is not the best way to do this, that we need to do this together to figure out this disease and figure out the best way to help people suffering from it. Do you have any final sort of takeaways as we run up against time here?
Jodi Ettenberg: Sure. I think you’re right. Conversations like these are a good start, and I appreciate the opportunity to participate in this conversation. Thank you for asking me to speak with you about this topic. Another area of collaboration is research. The Spinal CSF Leak Foundation is close to launching its international patient registry, the ileak registry℠, and it’ll be hopefully a new avenue of collaboration between physicians and patients that will improve knowledge and access and progress in the field, and we hope supports patients in their leak journey. I think research is another area that patients would be thrilled to be asked to participate in or provide some feedback for.
Dr. Callen: Yeah, that’s actually a really good jumping-off point for figuring out, in an attempt to better delineate these barriers of care. We’ve actually built, in collaboration with the Foundation and the planners of this conference, a survey that is focused on the barriers of care to accessing spinal CSF leak care. It’s to help us better understand what it’s like to navigate this complex system of care so we could do a better job of improving it. We’re going to be, when we send a feedback email to all the attendees, we’ll be giving you a link to the survey. So it’ll be completely anonymized, collecting no personal information at all. So please participate in the survey if you’re able to.
Jodi Ettenberg: And just a note on housekeeping, because a bunch of patients have written, not a lot, a bunch of patients have written in and said they did not get the emails that went out about this conference and the link to join and whatnot. So we will also be posting that in our newsletter and on social media on the Foundation properties so that you can check there if, for some reason, it doesn’t deliver. We’re working with our platform to try and fix that problem, though. And we hope for many conversations in the future that shed light on complex issues. Appreciate the opportunity to have a conference with both patients and physician speakers. I learned a lot today, and I appreciate also, as all patients do, the incredible volume of research in the field. It’s been amazing to see, and may that continue.