The following is a transcript of a Q&A session at Spinal CSF Leak: Bridging the Gap 2024. Please note that the transcript been edited for length and clarity to center on the participant questions, whether put forward via online or in-person submission.
Moderator: I’d like to start this by asking one of the online questions from this morning, and perhaps asking maybe a radiologist or maybe one of our surgical colleagues to answer this? We’ve heard a lot about arachnoid blebs this morning, so I’d like to ask what is the recommended treatment pathway for arachnoid bleb? Does targeted patching really work?
Answer:
Dr. Andrew Callen: In our experience, most of those need surgery. I think I can count on one hand the number of patients who’ve “cured” after targeted patching of a bleb. As Dr. Beck beautifully showed, there’s something structural going on there between the neomembranes and the sort of structural distortion of the dura and the arachnoid coming through that I don’t think a patch is going to necessarily fix. I think it’s worth a try if a patient so wishes, but in our experience, I think most of these do need surgery.
Dr. Jürgen Beck: I think it’s worth a try. We would recommend trying one blood patch first after proceeding to surgery then.
Moderator: This is mainly for the surgeons: for delicate dura or dura that has failed initial grafting and stitching efforts, what has been the most successful way to achieve closure?
Answer:
Dr. Jürgen Beck: Sometimes it is really difficult to identify the dura properly. The real dura, and maybe in some of these cases, the neodura or the neomembrane, was attacked – and then suturing fails because it’s not so strong as the real dura. This might be one reason. And in very, very rare cases – but Wouter Schievink probably has the largest experience – there are really some strange and rare cases where the dura is very weak. In these cases, we tried several attempts to make an indentation of the dura, so to fold it together to a double layer or just to make the 360 approach and try to reconstruct and augment the dura. But this is a difficult situation and I cannot give you any standard procedure, just some tips and tricks from experience.
Dr. Wouter Schievink: Yeah, well I agree with you, Jürgen. The other thing is, I think it’s important to use sutures where the diameter of the needle is smaller than the diameter of the thread. The vast majority of sutures we have in the United States are the reverse. So, if you have a very, very attenuated dura, with each time you put the needle through the dura, you actually create a little hole that they can leak through or tear.
Dr. Vinay Deshmukh: I think those are both great points. You know, I find that also it’s very difficult on redo iatrogenic [cases] where – now the dura is not necessarily thinned, the dura is stuck to scar. And so, it’s actually thick, and to try to close that hole, bring it together in watertight fashion. And that’s where patching – I don’t know what you guys prefer to use for patching, but I think patching is tension-free and can be watertight.
Dr. Peter Lennarson: To add a couple thoughts as well. One thing I found is when you – despite the leak, often there’s still quite a bit of turgor in the sack there, and if you drain more fluid then you sort of create some slack in the membrane that you can use to help bring it together. And the other thing that you saw – actually in those videos of Dr. Beck – is sticking a little piece of patch material in the hole. And then you can sew from dura to patch to dura; you don’t have to use quite as much force to bring the dura-to-dura edge together because you’ve got that extra piece of patch in the middle, and it doesn’t tear the dura that’s so delicate on either side as much.
Moderator: So, I just want to find out quickly – maybe different centers have different approaches to this, I don’t think there’s very good standardization on this – but how quickly do we expect epidural fluid to resolve following surgery? How early can we be confident it’s not a persistent leak versus a slow resolution, for example?
Answer:
Dr. Eike Piechowiak: There are some cases where we perform immediately – like 24 hours after surgery – we perform like imaging because the patient has severe headache or something else. So, we just go in for an MRI. And you see after 24 hours or 48 hours, the epidural fluid is nearly gone. It’s pretty fast. When you would perform like imaging like seven or 14 days afterwards and there would still be epidural fluid, I wouldn’t be so sure that the leak is really closed. So, it resolves pretty fast actually.
Question: I have a question for Dr. Petrucci, and I know this is like an evidence-free zone, but if you see a patient who you think is actively leaking during pregnancy, whether or not the imaging showed anything, whether or not they had treatment, what do you recommend when it’s time for delivery? Like should this person be Valsalvaing and bearing down? Should she have a C-section? Should she have general anesthesia? Do you have any thoughts about this?
Answer:
Dr. Samantha Petrucci: Right, so it’s going to be a very individualized course, right? Every woman’s labor and delivery, what she wants out of it, and then also in working with the providers. In that one report that I cited, they actually state which any kind of like labor and delivery analgesia method the patients chose. Again, totally personalized. In our experience, we had a small cohort of patients we presented at last year’s American Headache Society – they all chose awake vaginal deliveries with combined spinal anesthesia. Some other patients, and again in consulting with their teams, do choose a C-section under general anesthesia. So, I think it’s just very individualized risks and benefits in what the patient desires for their birth experience.
Dr. Marius Birlea: Many people wanted to ask questions, but if I may just make a quick comment with the numbers that Dr. Callen presented – 400,000 patients with PDPH – I think we all can learn to do better. Patients, as a suggestion, to report their symptoms better, doctors to recognize them better, and interventionalists surgeons to treat them or grow the numbers of interventionalists. Just a suggestion.
Question: Just a question about the relationship between meningeal or perineural cysts and CSF-venous fistulas?
Answer:
Dr. Peter Kranz: We took a look at this in one of our previous papers, and what we found was that the majority of CSF-venous fistulas were associated with a nerve root sleeve diverticulum. And I think that not all of them are – there are some fistulas that arise directly off the thecal sac, but they’re the minority. I also think it’s important to recognize the converse, which is that most nerve root sleeve diverticula, the vast majority, do not harbor a CSF-venous fistula. And so, one should not feel like just because there are perineural diverticula that all of those are potentially problematic.
It’s kind of like moles on your skin. A lot of people have moles on their skin, they’re not a problem, but if you have melanoma, we’re going to be looking very closely at those moles on your skin. So just having them is normal – perineural diverticula are normal; normal people have them, they occur at approximately the same rate in people who do and don’t have CSF leaks.
But when you have a CSF-venous fistula, or you’re suspected to have a venous fistula, we’re going to be looking very closely at those. At least that’s my take on it.
Question: This question will be for Dr. Schievink and I guess the rest of the floor if you would like to weigh in. From your presentation, you mentioned that 10 to 20% of patients continue to have low pressure symptoms post-surgery. I mean, that to me seems like a pretty significant percentage, so I was just wondering if there could be a percentage of underdiagnosed pseudomeningoceles that could be difficult to detect on imaging?
Answer:
Dr. Wouter Schievink: Yeah, like I said earlier today, that’s really one of the real conundrums that we’re faced with. And I think you know, it’s a very heterogeneous group of people who have that problem after surgery. And I think in Dr. Beck’s study, some of them were found to still have a leak or a different type of leak, and then some – it really looked more like rebound high pressure and medication overuse headache. I think those were the three most common reasons for it.
You know, we try to be practical, so if somebody comes out to see us and we do a myelogram and then they have surgery or some other treatment, and the leak is gone on imaging after treatment – we almost always get an MRI before they’re discharged after surgery. Then we usually recommend a blood patch at the site of the myelogram with the thinking that you know, you have fixed the original leak and then pressure builds up with or without symptoms of high pressure, and then maybe that forced some spinal fluid to leak out from the myelogram puncture site, even though we use a small gauge needle, etc.
But again right, that’s a really difficult decision to make what the next step would be.
Question: I’m really curious to know, in terms of grafting for intradural repair, I mean from my own reading and talking to surgeons, it seems like there is a lot of heterogeneity and the surgeon’s preference for graft. I’m just wondering – just want to put this question out there – is there a graft material that is preferred or seems to give better surgical outcomes and why?
Answer:
Dr. Wouter Schievink: Yeah, I mean you’re right, I think most of us use different materials. I mean, I like to use the patient’s own material so I usually use a little muscle graft. Not per se to keep the cost down, but that seems to work really well. Others use fat. Dr. Beck likes to use something called TachoSil – you want to explain to us exactly what that is?
Dr. Jürgen Beck: The point I want to make is that probably the technique itself is more important than the material. I think you can use fat, muscle, TachoSil, or any other dural substitute as long as you really reconstruct the normal anatomy, not just put something on top of it – really try to reconstruct and to fix the problem. This is key and not the material. And from the additional materials, I think we should be aware that some of these artificial glues that are very plastic-like might be dangerous. So apart from that, I think it doesn’t really matter as long as you reconstruct the normal anatomy.
Dr. Vinay Deshmukh: I was just going to add: I also use Dura-Guard. I don’t know if you guys like DuraGuard or not. Xenograft is very…it handles very naturally like dura, and it sutures very nicely. DuraGen® for an onlay is a great material. My concern is if you get a stitch, would the stitch potentially scar to the ventral neural elements? And so I like to put something over the stitch and suture that in place as well, sort of away from the neural elements.
And then the other thing that we started doing recently – I’d love to get your thoughts on it – is on type 1 leaks, the iatrogenic dural opening, trying to save the arachnoid if we can, and then go extra-arachnoid to the hole.
And that way whatever you lay in your repair has another natural barrier between it and the spinal cord. Because my concern is 20 years from now, all these folks that we’re operating on – are they going to come back with tethered cord, arachnoiditis, and all of those long-term consequences of intradural work?
Question: I was wondering – like of all the post-dural puncture headaches, are they all sharp needles? In other words, are we making a difference by using blunt tip side-holed needles. Or are we still getting significant leaks from even trying to use the most minimally-invasive and the smallest needles? Are we going to stop creating these problems that we’re having to treat that are so iatrogenic, which just seems so terrible?
Answer:
Dr. Peter Kranz: I don’t know the answer to your question directly. I wish I did. I know that in there’s been some meta-analyses of post-dural puncture headache comparing cutting point needles with pencil point needles, and the risk reduction is about twofold. So, you have about half the chance of getting post-dural puncture headache with a blunt tip needle.
Now a lot of these are comparing very small needles – 25-gauge, 26-gauge, 27-gauge needles – so it’s unclear whether or not the type of needles that we use for myelography would be exactly the same.
In other words, does a pencil point needle make a bigger difference if it’s a 22 as opposed to like a 28-gauge needle or something like that? But I think from the systematic reviews it comes out to about a two-fold risk reduction.
Question: So, Jürgen, in the cases that you operate on, or anybody operates on, are they sharp? Are they cutting needles or have they been pencil-point needles?
Answer:
Dr. Jürgen Beck: Excellent point. We need to do our homework and I haven’t asked that. I will do that. I don’t know.
Dr. Wouter Schievink: You know, oftentimes it’s not mentioned. Right? They go to an ER for a lumbar puncture and you look at the report, it just says we did a lumbar puncture, but there’s no mention of what type of needle was used and that still happens.
Dr. Linda Gray: I’ve actually called ERs and found out what it was. Most of the time they’re sharp cutting needles, they are not low-profile needles at all.
Dr. Deborah Friedman: There are actually very good studies about the types of needles used for lumbar puncture, not itty-bitty little needles but regular needles, showing a very clear benefit to using non-cutting needles.
You know, the problem is: we can’t get the Quincke needle out of the LP tray. Right? It comes with a kit, and they’re cheap. And substituting a Sprotte needle for example, adds significantly to the cost – and most hospitals and most offices don’t want to do that. So, I think that there has to be unified advocacy from us to get the company to take the Quincke needle out of the LP tray.
Question: This question is open to the floor, but Dr. Kranz reports about 75 – or up to 75% – of his patients experience rebound high pressure post the venous fistula embolization. Prior to embolization, do you see waxing and waning of symptoms more with people with this venous fistula? And if so, do you think these individuals could be experiencing high- and low-pressure swings prior to the embolization and are they more likely to [therefore] experience the rebound high pressure?
Answer:
Dr. Peter Kranz: If I’m understanding the question, I think what I’m hearing is – do people have different symptoms, if the people who experience rebound high pressure have a different set of symptoms prior to treatment, specifically variability in terms of their symptoms? And I haven’t thought of that, but just sort of thinking back, reflecting back, I would say no. I don’t think that happens, that at least hasn’t been my observation.
We often talk about alternating high and low pressure – it’s really hard to know if that’s actually happening because we can’t measure it in real time.
Certainly, people feel fluctuating symptoms in some cases, and sometimes those are orthostatic and reverse orthostatic. Some of the symptoms that we typically associate with high and low pressure, but we don’t for sure know that people have cyclical changes in their CSF pressure. Although people may have changes in the stiffness or the compliance that causes them to have spikes of pressure, to have their pressure spike up higher.
But in answer to the question, I have not noticed people to have a different symptom profile if they present with rebound high pressure, except to say that people with more severe symptoms tend to have worse rebound high pressure than people with mild symptoms as a general observation.
Dr. Eike Piechowiak: So, one thing – because I think most centers have like some kind of referring bias, right? So, the patients we see are mostly patients that have had the disease for years. And now, the longer the patient has the disease, the more severe the rebound hypertension sometimes appears. So, when there are patients in the vicinity of Bern for example, and they come directly to our center and they will be treated like 2 weeks after the symptom onset, they rarely, rarely develop like rebound hypertension. In my opinion, it’s mainly referring bias we have because we see all the chronic and problematic cases most of the times.
Question: Thank you. This question is for Dr. Petrucci and anyone else who may care to contribute. You mentioned something very interesting during your presentation called an epiduroscopy. Given our limited success with myelograms and iatrogenic leaks, have you ever considered the utility of it to directly visualize the dura in patients with post-dural puncture headache as opposed to a myelogram where you may breach the dura?
Dr. Samantha Petrucci: I’ve actually not thought of that before. So, part of the challenge with the epiduroscopy is that you have to use that big epidural needle, right? That like 16-17-18-gauge Tuohy in order to get the scope in. So, using that alone, you’re posing an additional risk for an inadvertent dural injury.
I think a technique that we have found a lot of utility with is this idea of an epidurogram. I showed during the talk, you know that was almost an inadvertent one – we saw during injection of the patch material that you could see the intravasation. This can be done with the teeny tiny 22-gauge spinal needle, so not the larger needle. So, while we can’t look and visualize the epidural space directly, we can kind of see is there this area of injury? And I’m not sure what the mechanism is, but there’s something different that happens when you layer the contrast material over the dura rather than what we’re used to seeing of this pressurized thecal sac try to get it to come out.
We have found leaks using this epidurogram technique that are not found myelographically, so it’s been useful for us and I think will continue to be a useful tool to localize the leaks for some patients, particularly iatrogenic.
Moderator: Can I just jump on that question because it sort of ties in: it was one of the pre-submitted questions we had, several based on this topic. I want to ask maybe Andy [Callen], Peter [Kranz], Eike [Piechowiak], to maybe comment on this, which is: what is your imaging pathway for a post-dural puncture patient?
Answer:
Dr. Andrew Callen: Yeah, I mean I think this is why the clinical interview and getting to know the patient beforehand is very important before just prescribing tests and treatments before you get to know them. But in general, I don’t go straight to myelography with them. I start with our 3D T2 fat saturated imaging, try to identify anything that can be localizing, and then if they haven’t had it yet, try patching.
And what Dr. Petrucci mentioned is something that we’ve been incorporating more and more. You know, the intravasation concept from an epidurogram can be confounded in the context of a recent puncture that’s fresh – maybe the intravasation you see is from your puncture. But if you take a patient who is years away from their puncture or months away from their puncture and you do a patch – before we patch, we get in the epidural space, put in some diluted contrast up and down and then just let that sit for a while, and see if we can see an area where there’s actually subarachnoid intravasation of contrast and then just go ahead and patch them.
I think patching is a good place to start with these patients rather than going to myelography. If you then have to start thinking outside the box after that and wondering if there’s something else that you’re missing, or if potentially your finding on the MRI is not definitive for a bleb and that you’re wondering could it be a vein or something and you really want to demonstrate that dural contour abnormality that will increase your likelihood of – or increase your confidence rather for going to surgery, it’s potentially a different story.
Dr. Peter Kranz: I think this is one of those known unknowns, but I would agree with what Andy said. I think that the idea of the epidurogram and looking for intravasation is interesting. I think there’s limited experience with it but I’m excited to see what it may show. But I also try to start with not doing a – if a dural puncture is what brought you to the dance, I’m going to try not to do another dural puncture.
But I also think it’s important to understand that there are times when you have to do that. There are times when you don’t want to do something but you do it anyway because the situation merits it. So, I don’t think it’s the wrong answer to do a myelogram, I just think you need to consider what the risks are and what you’re trying to accomplish.
Dr. Eike Piechowiak: Our protocols: we do the same scan we do for regular CSF leak workup, just to see what the brain is doing, and then they have these heavily T2-weighted fat saturated images to see if it’s not just post-dural puncture headache but is an iatrogenic leak.
But then when you see like epidural fluid, then I would consider doing a myelogram. When I don’t see epidural fluids and maybe you see a bleb, then the workup would be different from that point on, because we know when you just see a bleb or when you have post-dural puncture headache without any epidural fluid, your myelography will turn out negative quite often. So, in this case, we don’t really perform myelography regularly.
Dr. Lalani Carlton Jones: I would just echo what all of these guys have said about the importance of heavily-weighted fat saturated imaging for this, because this has also been asked as a question.
Question: I know that aneurysm clips sometimes are used for leaky diverticula. What is known about their failure rate, or if a patient has a leak, the suspected leak again and nothing is found, what are some considerations when there’s a clip at play?
Answer:
Dr. Wouter Schievink: You know these are clips that are meant to treat brain aneurysms so they’ve been tested really extensively over decades because if a clip would fail with a brain aneurysm, the person would most likely not survive that. But clearly, I mean there have been some patients that I’ve operated on years later where it seems like there’s a little tear at the base where the clip was placed, and that could have been related to the clip itself or it could have been a tear that we did not recognize at the time of surgery. But it’s really unlikely that these clips would move around or anything like that.
Question: I had a question for Dr. Beck about neomembranes. If it’s showing up on imaging before, is it a discrete competent layer in itself? Is it from blood patches? And how important you think it is to remove? You seem to be unique in talking about its importance. So, I’d love that. And a follow-up is: does your impression of surgical success after you operate on someone correlate with the patient’s impression of surgical success?
Answer:
Dr. Jürgen Beck: Excellent questions. I do really think that these neomembranes play a key role in the pathophysiology of spontaneous intracranial hypotension, as well as in chronic post-dural puncture headache. But they are distinct for each disease, and they look different.
I think in spontaneous leaks, they are part of the appearance on MRI – the diverticula are probably out-pouched arachnoids in many cases.
And I think in post-dural puncture headache, you barely are able to visualize them before surgery and they look different – they’re very sticky. So, I only can suspect they play a role in the pathophysiology.
I usually do not encounter these neomembranes after blood patching because all our patients had several, up to 10 or 15 blood patches, and there are no neomembranes only from the blood patching. So crucial role, and to give you an answer how to handle them is try to restore the normal anatomy as a rule of thumb.
And your second question about my success and estimation of the success and the patient estimation: I need to rely on the patient and we need to probably be more systematic and to be more structured and to design, and use scales and numbers so that we can really say how quantified the improvement [is], and not just “a patient improved.” And never let a surgeon judge the result of the surgery – never. So, another person should do this in a structured quantitative way.
Question: My question pertains to fibrin glue occlusion. Is this an option for patients with CSF-venous fistulas located in the internal vertebral venous plexus?
Answer:
Dr. Mark Mamlouk: Yeah, I think that there has probably less been described, because internal epidural plexus fistulas are probably less discovered and less common, but it would be the same technique. And instead of coating the glue more in that perivertebral space, then you want to coat the glue more in that neural foramen, and that still renders a good application for that.
Moderator: I just want to wrap up with some of the online questions – there were sort of similar themes here which were talking about improvement following surgery. We’ve already talked a lot about this in the talks and in some of the Q&As, so I want to ask maybe each of you a difficult question which is – you may have encountered, and we all have these – with a patient who’s just not better after patching, embolization, surgical repair, where do you go from there? What do you talk – how do you talk to your patients and what do you do? Maybe we can hear some different approaches.
Dr. Mark Mamlouk: Can you just clarify – is it in a patient with still a persistent leak or is it a non-leak?
Moderator: A leak of any kind.
Answer:
Dr. Mark Mamlouk: I’m curious to see everyone’s thoughts but I think those are: as emphasized that a multi-disciplinary approach is necessary. I think it’s important not to dismiss the patient’s concerns and symptoms, and to see if there’s anything collectively as a group that you can identify to help them in any way. I’m sure there are many patients like that that are probably gone under the radar, but I think a multidisciplinary discussion is required.
Dr. Vinay Deshmukh: Yeah, I would agree with that. First and foremost, make sure you fix the leak that was initially treated surgically, and make sure you scrutinize the work that you’ve done as a surgeon. And if patients are still persistently symptomatic and everything looks good, I say don’t quit – just keep checking in, keep looking.
This field is rapidly evolving, we’re learning more. I’ve learned so much just this last few, you know, day and two, so I say don’t quit, just keep working.
Dr. Peter Kranz: I think when you’re doing imaging or something like that after treatment, it’s important to try to answer the question like, “Have you fixed the plumbing problem? Have you fixed the leak?” And if you feel like you have and you really do high quality imaging, it is very difficult when you feel like you fixed the plumbing problem, signs have reversed, but people still have persistent symptoms.
I think that in that particular instance, you have to start doing everything you can think of and keeping an open mind about things that you can try. And so that’s going to be practical steps like maybe you do a non-targeted epidural blood patch, maybe you screen that patient for dysautonomia, maybe you try oral medications that you know may not work for a CSF leak normally but maybe there’s some component of sensitization or some neurologic phenomenon that’s driving those symptoms, maybe you try other interventional therapies like occipital nerve blocks.
And yeah, none of those are going to be perfect, but at that point you really have to start doing everything that you can think of to try to achieve success and it’s maybe frustrating, but sometimes you find something that is helpful.
Dr. Eike Piechowiak: So, in regarding of kind of leaks that you treat – when you have a patient with CSF-venous fistula and he still has symptoms, you always think about maybe there’s a recurrent fistula we haven’t really occluded, so you have to check on that. For epidural fluid so SLEC-positive leaks, you have to check that, like Peter is saying, that it has really closed. And what we always have to consider being unbiased toward the patient despite the history he had. So, you have to still think when he’s coming and he has – he had a leak or a fistula, whatever, and then you have to check what else could this be.
We try to look into this what it is, and there are many reasons why a patient still can have headache after having a CSF leak or SLEC-positive leak occluded. So, and then you just have to work it up again. But keep in mind that it’s – you’re not still looking for a leak, it can be anything else like hypertension, headache related to medications for example. There are a ton of reasons and that’s when the multidisciplinary team is coming in handy because they – I’m just treating like a handfuls of headache disorders, right? There are many, many, many more there. So just – it’s helpful when you have a team that can help you with this.
Dr. Wouter Schievink: I think those are all really, really good points. For me as a surgeon, you know, if you have done surgery and there’s no evidence for a leak anymore, then you also have to consider – should I go back and sort of explore the area where the surgery has been done? I’ve generally been really hesitant to do that, but I know some surgeons do that not infrequently and they tell me that “Yeah, you know I saw this little ventral tear and I fixed it and I went back in – imaging was normal but there was like another one or two millimeter that I hadn’t really patched that well.” But I usually have a really high threshold for doing that.
Dr. Jürgen Beck: I think no matter what we do, there will still be a significant portion of the patients that will have pain after we did the plumbing work. And I think there’s one point we should add and I like very much – I think it was from Dr. Andrew Callen – how to communicate with a patient. And we probably should add at this point that it’s our fault and we failed to elucidate the mechanism of that and that we should continue working and it’s – that there must be something but we are not able at the moment to clarify what this is. And I think this could probably be helpful in the communication with our patients.
Dr. Andrew Callen: I want to reiterate what Dr. Schievink said earlier in the conversation: I’ve been very impressed by in that situation just thinking, “could I have caused the new problem with the myelogram I did working them up?” And then treating that and going after that very aggressively with patching. I’ve seen in several cases patients do better after that. So, I think we shouldn’t underestimate the harm that we could have caused in working our patients up.
The other thing is relying on the people in this room. Reaching out to my colleagues across the country, getting a new set of eyes on a case that I’ve been staring at and maybe looking at the wrong way or missing something.
I also think that there is a sort of stigma behind patients who go to multiple places and or maybe they’re “doctor shopping” or what have you, but you know, maybe somebody else can do a better job than I did, right? And if they go somewhere and somebody else finds something that I missed, I’m happy for the patient for that reason and it can be a blow to your ego, but I think that’s an important thing – is sometimes maybe somebody has hit – you’ve hit the limit of what you can do for a patient and we have this team, these people in this room all do things a little bit a different way, and what matters at the end is that the patient gets helped. So, I sometimes will encourage that. I’ll say maybe you should try that, and if it results in them getting better, I want that feedback so that I can figure out what I can do better next time.
And most of all I just want them to feel better.
Dr. Peter Lennarson: Yeah, I think those are all excellent points. I don’t – I was going to say several things that have already been said so I won’t repeat them, but I think just recognizing with the patient that we do have a less than complete understanding of this situation and that we are willing to keep thinking about it and keep looking, and that they are able to keep coming back to us with new concerns, new symptoms, new thoughts and sometimes their new thoughts and just some passage of time will help clarify what’s going on.
Dr. Samantha Petrucci: I don’t have a ton to add either, but echoing some of Dr. Callen’s sentiments, because I’ve been lucky enough to be trained by him, is that I think we need to in life and in medicine leave people better than how we found them. So, you know, doing everything we can while not causing additional harm, keeping an open mind, considering alternate diagnoses. I think there’s been a little bit of stigma – we’ve heard about it from one patient presentation this morning and we’ll hear about it later – is how to manage things maybe when we’re at an impasse and how can we give you the highest quality of life without hurting you by continuing to push further and further and further. I think are all conversations that need to be had.
Question: So, this is going to be a hard question – what do you do with someone that’s too big to fix? My husband [had surgery], then they put artificial material on his dura multiple times, did all kinds of testing and he was still leaking. We ended up going to another facility after they sent him home on hospice. He was then surgically looked at and found debris filled – he was leaking. They tried to fix it with artificial stuff and now we’re at the point that he had more imaging; there’s a huge fluid collection there but there’s no connection that they can see. They said he’s too big to fix because it runs from L1-2 to S2. I’m sorry, I know it’s a hard question.
Answer:
Dr. Jürgen Beck: I cannot give any specific answer without seeing the case. I think it’s useless to tell my opinion without – it’s a very tough case and I would need to review all the images, the studies, and I cannot give you a wise statement here without knowing the case. Sorry for that.
Dr. Wouter Schievink: Yeah, that’s really hard. So, what Dr. Beck said right – it’s hard to know without looking at the scans but you know, I have told patients that as long as the suffering is relatively tolerable, I also do not want to do surgery on them because I think the risk of making things worse is pretty high.
Moderator: We’re going to wrap it up here. I’d like to thank our physician speakers and patient speakers for an absolutely brilliant morning of talks, and we’re going to break for lunch now.