Slides
Transcript
Great, thank you for that kind introduction. I’d also like to thank the Foundation and Dr. Callen for the invitation to speak. So, over the next 15 minutes, we’re going to be going on a spinal CSF leak journey on communication, and we’re going to have three main stops along the way. First, discussing that initial provider-patient interaction; secondly, discussing diagnosis and how to relay it when it’s present – and how to relay it when it may not be present; and lastly, discuss treatment.
So, let’s first start off with the initial interaction. It’s important, in the initial interaction, to set expectations. I like to group patients into two major groups. The first group are patients where the diagnosis may be new to them, and they may be unfamiliar with it. And then, the second group – where patients have been living with this diagnosis for years and are really well-versed in it. The expectations of both of those groups may be different, and it’s important to set those expectations right up front.
It’s also important, as providers, we really need to eliminate any bias when encountering any patients. Of course, this is true for all patient interactions, but I would venture to say even more so in patients with spinal CSF leaks, as they’ve been through many things to get to this point.
Remember, when encountering a patient, you’re not just approaching the physical pain. When I encounter patients and do the initial intake, and after the patient relates to me all their symptoms, I like to pause for a sec and just wait to see if there’s anything more that they want to tell. Oftentimes or sometimes, you may have patients get very emotional – may get tearful and express things in their life that this has impacted and how it’s caused harm and things they haven’t been able to do. So, I would ask, as providers, the emotions need to be healed as well, and it’s not just the physical pain that we’re addressing.
One challenge upon communication that many of us have dealt with is communicating the “negative brain.” Here was a patient with a brain MRI. It was relatively normal. If you do the Bern assessment, it was a Bern of one, and this patient went on to have myography and had a CSF-venous fistula. How do you relate to the patient that their brain may not have been normal? It’s important to be gracious and professional in discussing those differences of opinion. Some patients with spinal CSF leaks may have doubts in the healthcare system, so we need to not perpetuate that, but we need to be professional.
For something like this, I would word it as, “Well, your scan is essentially normal. However, CSF leak providers look at it in different contexts, and we scrutinize certain things that may hint for us to explore a spinal CSF leak.” So, you’re establishing that professionalism with the patient.
Now, what if the MRI is truly normal? And I know we’ve had some examples of this. Here was a woman with Valsalva-induced headaches, and she had a completely normal brain MRI – Bern zero. Meningeal diverticula were observed on the spine MRI. She went on to have a myelogram, she had a fistula that we subsequently patched and treated. So, my personal approach to this is, I look for a good clinical history and the presence of meningeal diverticula to explore further workup, and I know we’re going to be talking more about this tomorrow.
So, we talked about the initial interaction. Now, let’s move on to diagnosis -communicating that the leak has been found. I’ll tell you candidly, this is one of the best parts of my job. It’s one of the most gratifying things I do. It doesn’t matter how many fistulas you diagnose – finding a fistula seems like Christmas morning every time you see it. I’m hunched over the scanner, and then after we identify the fistula, I’ll walk into the room and relay to the patient, “We found the fistula.” More often than not, you’ll see tears coming down the patient’s face out of jubilation. After we do the myelogram and the treatment, we’ll bring them out to the recovery area, show the imaging to them and their family, and it really is one of the most gratifying things of my job. Of course, we know that we might not always find the leak, though.
Here was a patient with a high Bern score, and here was her first myelogram, and it was negative. Then we did a second myelogram, and now you can see that there was a CSF-venous fistula present. So, in cases like these, I typically like to offer reassurance to the patient, especially when the suspicion is high, and repeat the myelogram. Most patients are really amenable to this.
Now, I’m really candid about – I’m really passionate about this – about this next slide. I’ll tell you why. Here was a myelogram that I encountered, and there was this very subtle projection coming off in the internal epidural space there near the neural foramen. And frankly, I wasn’t sure – is this an internal epidural plexus fistula, or is this just a meningeal diverticulum? And here are my exact words to the patient: “Mr. Smith, I found something on your myelogram. It might be a leak, but I’m not confident, and it can be a normal finding.” And then we went on to discuss the next steps, pros and cons, and treatment. The reason why I’m passionate about this is that we, as providers, know that if you label someone as a patient with a spinal CSF leak, that diagnosis will stick with them, and they may go into additional treatments and additional workup that may not be necessary. So we really need to be honest about our certainty in relaying myelographic results. But you may say, “Well, I might not always be certain,” and that’s okay. It’s okay to be uncertain, but then just relay how candid you are about your certainty or uncertainty.
Communicating normal results. My personal approach to this over time has evolved. When I first started doing this, I would say something like this: “Good news. I don’t see any evidence of a CSF leak. You unlikely have one.” Some of these patients may have taken it okay, but some patients got either emotional in this, or some patients got defensive, and they would say, “Well, what’s accounting for my symptoms?”
So, then my approach changed a little bit, and I’d say I went on a more of a minimalistic route. I would say, “I don’t see any evidence of a CSF leak,” and I would stop there. But then I felt guilty. As someone who knows a little bit about CSF leaks, I felt that I wasn’t guiding the patients.
So now, I kind of say something like this. I say, “Miss Smith, you’ve had all the best imaging tests to diagnose a CSF leak. Based on these findings, my overall suspicion is low, and I would suggest we work with your doctors to include other diagnoses to account for your symptoms.”
So, I’m doing three things in saying something like this. One, I’m being candid about my myelographic results. Two, I’m validating the patient’s symptoms and not dismissing them. And three, I’m offering a solution and some potential next steps on where to go. So far, this method has worked.
I’ll say that we as providers may sometimes get caught up in our everyday interactions, and sometimes we forget to be human. I had a recent patient just a couple of months ago. She came to me. She had a high suspicion for a spinal leak. We did the myelogram, and it was negative, and I told her I wanted to repeat the exam because I think you probably do have a leak. But she told me she was going to Greece the following week. She was a retired teacher, and she had this trip planned with her fellow colleagues actually pre-pandemic, so it was canceled for four years. Here she was, a week before her trip, and she asked me if she could go on the trip. The easy thing for me to have done would have been to say to her from a medical-legal side, “Well, you have subdural collections – the answer is no.” But I knew she really wanted to go – she really wanted to go on this trip. So I reasoned with her and said, “Well, why don’t we get a head CT in the next couple of days, make sure your subdural collections are unchanged. And if you do go on this trip, I want you to take it easy while you’re on the trip.” Sure enough, she went on the trip. She had an amazing time. She came back. We found the fistula, we treated it, and it really was – everything turned out great. So, don’t forget to be human in your initial interactions with patients.
So, let’s move on to the last section – some challenges in communication in treatments. One challenge is communicating when a change in treatment is needed. Here is a patient with SIH. There was a ventral tear. We did some patching – bilateral foraminal patching. You can see actually some really good coating in the ventral epidural space. We were really happy with that. She improved, but she still had symptoms.
So, then we even did this new patch that Dr. Callen and I are exploring, which may provide some promise, where we injected directly into the extradural collection. We got her brain MRI to be normal, and her extradural collection in her spine, which was initially almost the whole spine, was now just a few levels. But she still had some symptoms despite all this. And me being very ambitious in my treatments – while it’s good to be ambitious, it’s also necessary to be humble enough to know when you’ve exceeded your limitations and when a change in treatment is needed.
So, at this point, we got her teed up for surgery. We placed a fiducial, and then these are images courtesy of our surgeon Dr. Sedrak. Here was the dural tear that was successfully repaired. So, understand when a change in treatment is necessary, and be humble enough to relay that to your patient.
Another challenge is communicating surgery in a relatively asymptomatic patient. Here was a patient with SIH. We did patching, brain MRI completely normalized, and the patient actually at this point had very minimal symptoms. So, how do you relate to the patient that they should go to surgery because they still have a persistent spinal CSF leak? But how do you relate to the patient that they should go to surgery for potential long-term complications of siderosis or bibrachial amyotrophy? And I think that’s a challenge. But we look at it on each individual patient and discuss the pros and cons for that next step.
I’m going to share one final case as my closing case, which is one of my most memorable CSF leak cases but also my most devastating. It was a 35-year-old woman, a mother of four. She had headaches, and she presented to our clinic – right when our clinic opened. We set her up for an appointment the following week, and we called her that day to discuss the next steps. That evening, she presented to the ER. And this wasn’t my specific ER, but the ER doc called me and said this was read out as a subarachnoid hemorrhage, and they wanted to know my opinion. I wondered if there was pseudo subarachnoid hemorrhage here, and I relayed to the ER doc to keep the patient flat and get a stat brain MRI. And this is the brain MRI. It shows very bad brain sag. Axial imaging showed bilateral uncal herniation, and additional imaging showed strokes in both PCA territories. I didn’t have procedural privileges at this hospital, so I said, “Let’s page anesthesia stat and let’s do an intrathecal saline infusion. Let’s hope to see if we can raise that brain.” That was performed, but the patient died. I think the greatest, hardest challenges was communicating defeat. We had to communicate defeat to the family, to the hospital, to the other doctors, and it was terrible. It was not something that any of us want to do, but I think it was necessary.
But just also as a reminder that while we’re making great progress on this disease, there’s still a lot more we need to do. So hopefully, I’ve shared with you the power and the necessity of good communication, and with that, I thank you for your attention.