S5 E9: CSF leak 2: symptoms, diagnosis and treatment

CSF leak 2: symptoms, diagnosis and treatment

Series 5, episode 9

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Transcript

00:00:00
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00:00:36 Dr Katy Munro
Welcome back to this episode of Heads Up podcast and today our topic is CSF leaks and we have done an earlier episode on this topic with Lisa Jamieson who described her experience of having a CSF leak and the process that she went through to get that diagnosed and ultimately healed the leak up.
But today I’m joined by two doctors who have personal experience of having a CSF leak and I think it would be really good if you could both introduce yourselves. So Doctor Bern Hard and Doctor Deborah Kerr. And Bern, do you want to start and just say a few words about who you are and how you got here?
00:01:18 Dr Bernadette Hard
Yeah, sure. Hi. I’m Doctor Hard — Bernadette. And I’m based in South Wales. I was a GP with specialism in addictions. And following on from a super stressful issue that I had related to work back in 2022, I had a spontaneous CSF leak and then went on a kind of journey of exploration to understand what had happened to me and work out what the pathway was to getting healed, which resulted in some private investigations and then an NHS referral for spinal neurosurgery where the leak was sealed back in August of last year, so I’m now symptom-free but had issues for about a year.
00:02:15 Dr Katy Munro
Yeah, and am I right in thinking you’re a trustee of the CSF Leak Association?
00:02:21 Dr Bernadette Hard
Yes.
00:02:22 Dr Katy Munro
And that’s how we got introduced because — and we’re going to talk about this a bit more later on — you are raising awareness about CSF leaks by doing an amazing challenge later in the year and more details about that as the podcast goes on, so keep listening.
Deborah, would you like to introduce yourself?
00:02:44 Dr Deborah Kerr
Yes. So as you say, I’m Deborah Kerr. I’m a GP, principally, I’ve been a GP in Hertfordshire for the last twenty-four years. And I’d always been interested in neurology and headache medicine, having had migraine myself in the past, but then unfortunately back in January 21, I had a spontaneous CSF leak and following that I had plenty of time to lie down and study headache medicine and eventually I joined the National Migraine Centre to be educated further and then to take over doing some clinics there. That’s me.
00:03:25 Dr Katy Munro
Yep. And we’re delighted to have you, Deborah, and Deborah’s been working with me for quite a long time now, so I thought it would be nice to first of all, just for the sake of the audience, just to talk about some basic things that we keep talking about CSF. So even if you want to pitch in and say what is CSF, why are we talking about CSF, and what is this curious fluid?
00:03:49 Dr Bernadette Hard
So yeah, I could take that. So essentially CSF stands for cerebrospinal fluid and it is a clear to straw-coloured fluid. And we’ve each got about 150mls of it and we produce and absorb it on a daily basis. And the brain and spinal cord, which together would be referred to as the central nervous system, are encased, they’re wrapped in a tough outer layer that we call dura. And the CSF is in between the brain and spinal cord and this dura and that CSF has got a couple of really important functions.
So essentially our brain is floating in this liquid, under pressure, so whereas the brain weighs over a kilo we don’t really perceive it as weighing anything. It’s pretty much weightless because it’s kept buoyant on this pressurised system. It also provides cushioning, so if you bang your head the brain will kind of bounce around, but to some extent be cushioned by the fact that it’s in this liquid and then it also provides a function of washing the brain surface in nutrients and removing toxins and waste products so it’s incredibly healthy. It oils the central nervous system. It’s incredibly important to how our brains and how our central nervous systems function mechanically and physiologically.
00:05:18 Dr Katy Munro
Really important stuff, isn’t it, CSF?
00:05:20 Dr Bernadette Hard
Important.
00:05:22 Dr Katy Munro
Yeah. And of course, finely tuned regulation of production and absorption, and that circulation of CSF. Normally that’s very finely tuned and balanced. But the problem comes when there’s a hole, and so the CSF starts to leak out. So Deborah, do you want to talk a little bit about what can cause the CSF leaks? Because I know there are various different ways that the CSF can leak out and sometimes it’s trauma, isn’t it? And sometimes it’s caused by doctors and sometimes it’s just a spontaneous one. So do you want to talk a bit more about that?
00:06:05 Dr Deborah Kerr
So I think as doctors, we’ve always been familiar with those that are caused by something else, so perhaps a tumour or surgery. But the spontaneous ones are those that are less well known. Leaks can occur both in the spine and they could be cranial as well and the symptoms will differ depending on where the leak is, but essentially you’re forming a hole in that tough outer layer that’s keeping the CSF in place, the dura, and the fluid is leaking out.
00:06:47 Dr Katy Munro
Yeah, I was reading something that’s saying this can quite often happen when doctors are operating on the sinuses of the patient and it’s quite delicate bone structure, then you can sometimes get leakage of CSF then and you can sometimes get it obviously if you have skull trauma and sometimes the CSF will leak out of the nose or even out of the ears if somebody’s been in an accident or something.
So if you have a visible sign like that, then it’s quite easy to sort of think, oh, something is going on. We better look into it. But with the spontaneous leaks, you have to be a bit more of a detective and have a conversation. Or listen very carefully to what the history is behind the onset of the symptoms. Would you agree?
00:07:32 Dr Deborah Kerr
Yeah, definitely. I think it’s always worth going back to when the headache started and how it was at the beginning. And one of the commonest causes, of course, is a lumbar puncture in the spine, and so noticing whether the headache occurred after perhaps an operation or an investigation is really important too.
00:07:55 Dr Katy Munro
Yeah, sometimes women after having an epidural get quite a bad headache, don’t they? And they need to lie down for a while, and that’s a similar thing.
And the other thing I was reading was that occasionally people who have raised intracranial pressure are more at risk of having a spontaneous CSF leak because of the raised pressure making things burst through I suppose. So of course, if that amazing substance, the CSF, is leaking out, that balance of production and keeping the right amount of CSF can be disrupted and that can cause a multitude of symptoms which as headache specialists, we recognise, you know, that often people do get a sudden onset of headache, but there are some rather more unusual features as well, aren’t there? Do you want to talk about that, Bern, for me?
00:08:54 Dr Bernadette Hard
Yeah. So the kind of pathognomonic feature of a CSF leak, one of the symptoms that is almost always present, at least in the beginning, is that this is a headache which is orthostatic, meaning it’s much, much worse when standing, and to some extent, relieved when lying flat. The patients become tolerant to being able to stand. Some do, some don’t. But over time it can change. But generally when it first occurs, it also happens fairly sort of suddenly, not as suddenly as like a thunderclap headache with a bleed. But it normally comes on within minutes to hours. And then there are other symptoms that some patients get that are characteristic. Tinnitus is a common one, and it’s often a strange kind of mechanical whooshing. There’s also other symptoms like numb patches here and there. Can get double vision with it and also another symptom that patients get is really severe cognitive sort of brain fog. And it’s not just your usual brain fog. It really does impair your ability to think, some people can’t find words, so it’s really quite debilitating.
00:10:21 Dr Katy Munro
Can I ask you personally, what sort of symptoms did you have when you first had your CSF leak?
00:10:29 Dr Bernadette Hard
So mine was really – well, it was such an odd experience. I mean, it was a very odd time in my life because I was under a great deal of stress. I literally felt my head was going to explode. There’d been this ongoing issue related to my work. And I was sitting dealing with some administrative stuff and my first symptom was that I actually felt a jolt in the back of my neck. It wasn’t painful. It was just a strange, you know, like a popping sensation in the back of my neck.
And then within a few minutes of that happening, I just felt like a boulder in my head, I felt the weight of my brain. I mean, I didn’t know at the time that it was the weight of my brain, but I felt this all-over heavy dragging sensation which was not initially hugely painful, but was extremely unpleasant and distracting and nauseating.
And then within five to ten minutes, it had reached pain. So I went to bed, took some paracetamols, woke in the night, was markedly worse, got up to take some more painkillers. Within minutes, was just vomiting, couldn’t tolerate being upright.
Tried to overcome it the next day. I was actually abroad at a conference, went into a pharmacist’s to see if I could get some stronger painkillers. I’m not a headache person. I never really had bad headaches and just because I was in the chemist and had been upright for thirty minutes at this point, I was almost going to pass out. I just said, so can I kind of, I think I was sick and I said, you’ve got a toilet. So I was vomiting into their toilet and I realised that’s such a relief when my head is down. So I ended up kneeling with my head on a jumper in the back of a chemist going, just let me stay here and gather my thoughts for a few minutes. I don’t want to be a nuisance and they were like, hmm, we’ll call an ambulance. So Malta has an excellent healthcare system and I ended up in an ambulance within twenty minutes and within a CT scanner. Of course I was then thinking I’ve got either meningitis or I’m having a brain haemorrhage.
And CT normal, which it often is, I was then thinking, shit, what if I’ve just made this up? What if I’m overreacting? What if they ask me to leave? I can’t cope. Googling on my phone, I came up with quite quickly, because I put in that it was worse on. I mean, I’d never really heard of a spontaneous CSF leak, so I googled it and I came up with this as a possibility. And I was lucky because then the medical senior doctor had also arrived at that conclusion and said we’re going to admit you under the neurologists and we’re going to get an MRI. So I got my diagnosis within a few days.
00:13:23 Dr Katy Munro
Wow, I would say that’s unusual, isn’t it? That is very good. And do you think it helped that you were a doctor because you knew what kind of symptoms to Google?
00:13:35 Dr Bernadette Hard
Completely, absolutely. I mean, I was lucky that I was in Malta because actually their health service is very much like I remember the NHS back in the nineties. You know, it’s not perfect and there are queues but it’s really functioning. You don’t get told there’s a twelve hour wait and no ambulances. And they had that whole team approach where they didn’t seem under huge pressure to get me out the door, you know. So I got a very thorough service. My husband’s also medical. And so between us, both Googling.
And like I was really lucky because I’ve got a colleague who’s a neurology professor and I was able to WhatsApp him and just go, what the hell is this? And within a few hours, he’d rung me back and I was, you know, having a chat with a colleague who’s not an expert in this but was very familiar with it and was able, you know. And then I could Google papers and start reading about it.
00:14:35 Dr Katy Munro
Yeah, yeah.
00:14:38 Dr Bernadette Hard
Yeah. Hugely helpful to have that, more connections as well as the medical background.
00:14:46 Dr Katy Munro
So Deborah, Bern was saying she wasn’t a headache-y person before, didn’t have bad headaches. So this was an unusual thing for her. But you were saying earlier that you had migraine prior to having yours. So what was your experience of it and how did you know that this was different from your migraine?
00:15:03 Dr Deborah Kerr
So mine was really quite different. As you say, I have had migraine before. It was migraine with aura, which meant that I was getting a very distinct visual pattern before the onset of a headache with nausea, but this was quite different. I’d woken up in the night. I can still remember that night, 29th January 2021, and I got up and by the time I got to the bathroom, my head hurt. I had to turn off the lights in the bathroom because they hurt me. Being a GP I went back to my bed, took my temperature, realised I didn’t have meningitis and went back to sleep and I slept absolutely fine once I was lying flat.
I woke up in the morning. By the time I got to work I had a headache again, with a few odd symptoms, really just sort of a pressure over my nose and my face. And the headache went on all day. We were in the middle of COVID, and I remember I went into Sainsbury’s and I thought I was wearing my mask, but I wasn’t. It was just high pressure over my nose and my cheeks and I did that three times in total, actually over the coming weeks.
So then each day was the same. I’d wake up. I was OK. I’d get up. By the time I got to work, I’d have a headache. The headache would get worse all day. And I tried all sorts of things. I changed my pillows, I checked the carbon monoxide monitor. I ended up seeing the GP and having a CT scan for this new onset headache.
And in the end, not knowing why I had a headache every single day, I booked some time off work thinking maybe I was stressed, even though I’ve never been someone who struggled with stress before and as soon as I did that the pattern became clear because I now had time to lie down during the day, whereas I’ve never done that before. I’d be at work all day.
So when I lay down, I was fine. We were now about six weeks into this headache and I realised that all of a sudden it got worse. Now every time I stood up, my tongue would tingle, my face would be pressured, I’d have pain in my neck, pain between my scapulae, my shoulder blades. My neck felt like it — well, I could hear it crackling, it was like rice crispies in my neck. And I had lots of different tinnitus. What was significant was that the tinnitus changed when I stood up and when I lay down. So I’d stand up, it’d be high-pitched. I lay down and it was like someone was chipping away at the rock inside my head.
I started to get vertigo standing up and those cognitive problems, those sort of concentration issues got worse and worse, to the point where I could only stand for twenty minutes and by the end of that twenty minutes I couldn’t follow a recipe for a simple Bolognese that I would normally make without a thought. But because I was off work, I was lying down regularly and I managed to work out the pattern that standing up was making it worse. So at that point I had my referral to neurology and I actually went off to see somebody privately. And luckily for me, he was exceptionally supportive and I was admitted to the Royal Free within forty-eight hours having a blood patch. So blood, my own blood, injected into my spine to see if that would improve my symptoms.
And luckily for me, it did improve me, although not perfectly. I was then able to stand up for about an hour and I had a second patch that gave me about an hour and a half standing and I ended up having a third patch. And by the end of the third patch I was so much better. I was upright all day. But of course this had taken from January to August now, and I’ve been lying down for much of that at home. And that’s when I did a lot of my learning.
And I’m now back at work and I’ve been back at work since about August 2021, but I’m not perfect. I still have a headache every single day towards the end of the day. Now it doesn’t come on till about five o’clock. But from that time, I know that the rest of the day is going to be a disaster and either I can’t get comfortable lying and I can’t get comfortable upright, but there is definitely changes when I go from lying down to standing up, but they’re not like they were. I don’t get the relief from lying down anymore.
I’ve had further investigations but unfortunately I’ve probably got a very small leak, possibly something called a fistula where the leak actually drains into your own vein. And it’s hard to find. So we haven’t found it yet, but hopefully one day.
00:20:24 Dr Katy Munro
So I was going to ask you both about investigations, so obviously the history is really key and it’s very interesting. Both of you know the exact date that this happened and we know as headache specialists that there’s a condition that’s sometimes designated as new daily persistent headache and we say that’s a headache that the patient knows exactly the date that their headache started and then it’s carried on ever since. And a lot of those are actually CSF leaks because, as you both described so clearly, this is a thing that just happens. It doesn’t gradually build up over weeks. It’s not like migraine that comes and goes. It’s an event that’s happened.
So I understand that there’s a test that you can do if somebody has an obviously CSF leak, if they have clear or straw-like fluid coming down their nose or coming out of their ears, there are things you can test, but on the whole people with spontaneous CSF leak don’t have that. And so they rely on scans and a simple CT scan or a simple MRI scan may not show anything. So what other kind of scans have you experienced and what was your experience of having scans?
00:21:43 Dr Bernadette Hard
So my understanding is that it doesn’t usually show on a CT but on an MRI that they usually do. They need to look at the brain and they need to look at the spinal cord and I’m not a neuroradiologist, but they do seem to if they’re looking for a CSF leak, they will do a specific type of scan. They’re not always with contrast. Sometimes they will use contrast, but they’re looking for very, very subtle changes. They’re looking to see in terms of the MRI of the head. If the brain is actually sinking down into the skull and you get distortion of the architecture of the brain, you can literally see it. They call it brain sag. What I had was my initial MRI, which showed sort of quite severe brain sag. And I also had a secondary complication. Which again was quite obvious on the MRI, which was bilateral subdural. So where the brain had sagged down, there was then pressure on the venous sinuses, the veins that stretch across the gap, which was now bigger. And the theory is that some of those might get torn and you get bleeding. So I had the bleeding around the brain.
They also need to look at the spine itself, the spinal cord. And what they’ll often see is they call it a SLEC sign. So they’ll actually basically see a puddle of CSF that has leaked out from where it should be. This isn’t present if you’ve got a fistula. If you’ve got that type of leak where Deborah mentioned that the CSF is leaking directly into a vein, one of those things is that there is no puddle because it’s being carried away.
So that’s the indication is to do an MRI fairly early on to try and see if they can confirm the diagnosis and get it looked at by someone who is a neuroradiologist with a special interest in CSF leaks. So that’s how we would work out if there was, and it is true that sometimes there’ll be a normal MRI scan or they’ll be an equivocal MRI scan. So a normal scan doesn’t rule it out, but it is likely that if you get someone who’s experienced enough at looking at the scans, they would be able to detect some degree of brain at low pressure, basically. But that doesn’t tell you where the leak is, so that will be the next thing we’d have to move on to.
00:24:15 Dr Katy Munro
And do you feel that the scan timing is crucial or you know, because those of you have had a diagnosis relatively quickly, but I’m aware that we see patients at the National Migraine Centre who’ve had symptoms which we sometimes identify as being suggestive of the CSF leak. But they’ve been months or even possibly years, having symptoms. So is it still important to have an MRI scan, even if months or years have gone past or can you miss the boat with it?
00:24:50 Dr Bernadette Hard
I mean, I think that some of the symptoms are less subtle earlier on. So it would be more likely to have the hygromas or subdural haemorrhages, the bleeding, early on. And that some of the symptoms may alter over time and become more subtle. But this is where if you’re doing a scan months and months in or even years in, you need to make sure that the person looking at that scan is a neuroradiologist who’s got expertise in CSF leaks that’s looking for a brain that’s adapted to this condition.
But I mean, I had a scan. I had quite a few. I had one within a few days and then I had two more within the admission that basically showed progression. So the first one didn’t have the bleeds. The second and third one had the bleeds. They had to do them to make sure that the bleeds were stable before I could fly home.
But then I had another scan, another two scans in the lead up to the surgery. So those were both six months or nine months after the leak, and they were both barn door intracranial hypotension, so they were still abnormal. And then I’ve had two MRIs since the surgery and they’ve both been normal, you know, resolved. So it seems to be that there are consistent signs. But they can be subtle.
00:26:18 Dr Katy Munro
I think you’re right, a neuroradiologist with expertise is the key thing, isn’t it? And I don’t know how many of those there are in the UK. But I know that there are some and they’re dotted about and it’s about finding, first of all, it’s about that question in your brain as to, could this be a CSF leak and just having that raised awareness that this is the kind of headache that might be caused by a CSF leak? And then it’s about finding the right people with the expertise to deal with that.
So going on to treatments, some people are told, well, just rest in bed and stay hydrated and give it time and you know, it may well sort itself out and heal. And when I spoke to Lisa Jamieson in a podcast episode before, she didn’t have any interventions. She didn’t have surgery. She didn’t, although it was proposed at some stage, she didn’t have blood patches. But she basically looked at her diet and her nutrition, studied for a nutritional degree and time took its healing course and thankfully she improved.
And let’s just talk about blood patches, Debra, because you’ve had three. Just to describe for the listeners, what is the point of a blood patch? What does it mean?
00:27:42 Dr Deborah Kerr
So when you have a blood patch, they take your own blood, so it’s not somebody else’s. It’s your own blood which has to be taken very carefully to keep it completely clean from your arm. And then that blood is placed into your back with a needle, as if you were having an epidural, which is what it is. So the blood is then injected into your back and they will inject varying amounts, but often limited by whether or not you’re getting a headache at the time. So some people can’t tolerate large volumes and others can tolerate a lot more.
And the thought process I think is not so much that it blocks the hole, but that it raises the pressure to alter the dynamics within the cord, and I think because of that it feels, but I’m…
00:28:49 Dr Katy Munro
Yeah, I don’t think we really know, do we, because we’re not sure that the blood just kind of finds its way to the hole and goes, oh, I’ll make a little clot here. It doesn’t seem to be as simple as that. But yes, it does seem to work is the bottom line in some people. But for you, did you have those three blood patches on consecutive days? What was the gap in between having them?
00:29:14 Dr Deborah Kerr
I think I was a month from the first one to the second one and another six weeks to the third one, but I think there’s varying thoughts on how soon they should be done and depending on how you respond.
00:29:25 Dr Katy Munro
Yeah. And I guess it will just depend on the individual and their symptoms and how they seem to be responding to it. Definitely. So Bern, why did you not have — you didn’t have a blood patch at all?
00:29:37 Dr Bernadette Hard
No, no it wasn’t.
00:29:38 Dr Katy Munro
So why was that then?
00:29:41 Dr Bernadette Hard
So it wasn’t offered in Malta. I mean that the team that looked after me were brilliant, but they were not CSF leak specialists. And they didn’t offer it. And so I didn’t have it. I then was home in the UK and I realised that it would be tricky to navigate the care pathway that I needed. So I saw a CSF leak expert privately who told me that the guidelines say we should try two blind epidural blood patches before we go looking for the leak.
But he said he’s had so much experience of this and he heard my story and my sort of presentation and he went, listen, there’s no point. You were going to need, he called it, he worked it out on that first call, you will have eventual leak. You will need surgery.
So I could have paid for two blood patches, but he told me that you’re going to end up needing a myelogram, which is the test that we do to try and locate, pinpoint the exact location of the leak. And I didn’t fancy the blood patches to be honest, because I knew that actually surgery, although no one wants to have surgery, but you get a higher cure rate from surgery than you do from blood patching. And I’d read a fair bit about blood patching and the risks of inflammation in the cord and later causing a symptom called arachnoiditis and I just didn’t fancy it.
I mean, I know the guidance say you should have a blood patch, but I didn’t fancy it, I was happy to go straight for a myelogram, so I went straight for the myelogram and I was really lucky in that it found the hole straight away, which was where we expected it, which was right at the back, which is – well, it’s actually at the front, but obviously they’re coming in from the back and the hole in my dura was at the front of the cord, in front of the spinal cord. And they’re not usually amenable to patching, I guess, because the way you’re putting the blood is far away from where the actual problem is. And so as expected, I went straight for surgery.
00:32:07 Dr Katy Munro
That’s interesting. So was that the site of the leak where you felt that popping sensation?
00:32:12 Dr Bernadette Hard
No.
00:32:14 Dr Katy Munro
No, it wasn’t?
00:32:14 Dr Bernadette Hard
No. They all thought that, well, the person I saw privately guessed where it would be as well. Simply on that, you know where they tend to be. They tend to be at points where there’s a lot of flexion in the spine. Mine was T11, so at the bottom of the thoracic bit.
But there was quite a lot of noise on the MRI and the original neuroradiologist had thought that was the site of the leak, very high, which horrified me because it was like, you know, C1, C2, no one wants to have to have surgery up there.
00:32:48 Dr Katy Munro
Yeah, yeah.
00:32:49 Dr Bernadette Hard
But that was just an inflamed dural sinus. So there was just a big, swollen area of venus, of a vein basically, responding to the fact that the system was at low pressure. So everything’s kind of swelling around it. And I think that the jolt that I felt was just my brain hitting the base of my skull. It was literally falling down.
00:33:19 Dr Katy Munro
Gosh. It feels a very dramatic thing because it is a very dramatic thing. But to have that physical sensation of something kind of, oh, that’s my brain falling down. It’s a bit alarming when you think of it like that. It’s interesting. You say that yours was in the thoracic spine because I was reading that spontaneous spinal CSF leaks are more common in female adults. Average age at presentation is 33 to 52 years, ish. And the most common location is upper thoracic level T1 to T6, followed by lower thoracic level T7 to T12 and then the lumbar and cervical spines are less common. Can you tell I’m reading that from a very useful document that I found doing the research for this podcast.
So yeah, I mean I don’t know, I suppose we think, oh, it’s a headache. Oh, it’s a leak. Oh, it’s in my brain. But of course, the leak is not, because it’s all joined up, the brain and the spinal column, the leak can be anywhere down that spinal column. And that can be tricky as well if people are not aware of that.
So, how are you both now?
00:34:35 Dr Bernadette Hard
Well, I’m great. I mean, my surgery is eleven months ago now and I have no leak symptoms and virtually no symptoms residual from surgery. I mean, yeah, brilliant. Touch wood.
00:34:53 Dr Katy Munro
So Bern, then tell us about your challenge.
00:34:58 Dr Bernadette Hard
So yeah, as you mentioned, I found the CSF Leak Association fairly early on in my Googling and what it allowed me to do was to locate the most useful research and evidence that I needed to guide my treatment and it provided me with the list of doctors in the UK that specialised. So it was vital to me, a kind of road map, and then I also found it really reassuring to meet other patients that had this condition. So it was a complete lifeline to me and I was invited and became a trustee.
And as I’ve sort of gone through this journey and learnt more about the charity and learnt more about this condition, I’ve become more and more sort of concerned really about how hit and miss this is if you are a patient. It depends on what area you’re in. What resources you’ve got available to you, not just financial, but you know, practical resources in terms of, do you have good Internet? Are you able to search for doctors? Are you able to travel to clinics all over the place? Are you able to…? It’s an absolute minefield. You might be lucky. You might be in an area where there’s a big hospital that’s got a CSF leak centre. Or you could be really stuck and having to challenge your local doctors because they might just be saying to you, oh, go and lie down, have a paracetamol, take some time or you know. So. And a lot of the patients that I see on the forums are in that position of just asking the audience almost, you know, what do I do now? So it became imperative for me to understand how we fix this. And I think that what we need is a commissioned service throughout the four nations, where every health board or trust has to have, you know, a funded pathway for patients and in order to really argue to get this commissioned service we need better data. You know, we have lots of case studies and case series, but we don’t have large, longitudinal studies that that commissioners like to hear around the health economics of needing to commission a service properly.
And in order to get that data — long answer to a short question — we need a patient registry which is essentially a database of all the patients that have this condition that has been carefully sifted by, you know, an expert according to criteria. And that’s not a cheap undertaking, you know. And the CSF Leak Association has done a — we were partners in co-producing the guidelines and we’re also working with academics and clinicians hopefully to get this registry underway but it needs an injection of cash and I’m just a very impatient person.
And we’ve been applying for various grants, but what I found is that this condition doesn’t tick many of the boxes. You think that the service will fund, but they like to fund cancer. They like to fund various common conditions. They like to fund mental health. They like to fund children. All very noble causes. But this doesn’t seem to fit in any categories. And it’s not very appealing. You know, it’s hard to get this message across to people why we need this funding and why it’s important.
00:38:30 Dr Katy Munro
Mm-hmm.
00:38:31 Dr Bernadette Hard
So I thought I would try some fundraising. And crazily, my husband decided to gift me a wing walk. He likes to do skydiving, so anything to do with planes and jumping out of them or sitting on top of them is appealing to him. And he booked on Friday the 13th.
00:38:52 Dr Katy Munro
Oh, nice.
00:38:53 Dr Bernadette Hard
I know. I think I was doing it anyway and then I thought, oh, I should just try and, you know, use this as a fundraising opportunity. So I’m raising money specifically for the CSF Leak Association, but specifically for our registry fund, by doing a sponsored wing walk in September.
00:39:12 Dr Katy Munro
So Friday the 13th of September is an easy date to remember and we will put the links to your fundraising page and spread the word about this. And so what do you have to do to wing walk? Do you have some sort of? I mean, I’m assuming you have a frame or you’re strapped in in some way.
00:39:32 Dr Bernadette Hard
Yes, I think that the novelty wing walkers, they just strap you on the wing of a little propeller plane and you know, it’s just a bit of fun, really. I think it’s fifteen minutes or something. I think like the professional wing walkers, they are actually attached, but they do, like, tricks and stand up. I won’t be doing any of that.
00:39:53 Dr Katy Munro
You’ll not be doing that. Not the first time anyway.
00:39:56 Dr Bernadette Hard
I think they might loop the loop.
00:39:59 Dr Katy Munro
Oh my lordy lord. That sounds as if it might precipitate an orthostatic headache, just the very thought of it.
00:40:06 Dr Bernadette Hard
Well, there’s no impact. And I did run this past my surgeon, so he said it’s fine.
00:40:13 Dr Katy Munro
Fine, go ahead. Oh, that’s amazing. And a brilliant thing to do. And yeah, hopefully you’ll raise lots of money. I hear what you’re saying because I think generally, it’s really hard to get charitable funding for headache-y things. You know, we don’t find it easy, do we? Because, headache. People think well, everybody gets a headache, don’t they? But of course, there are certain types of headache which are totally debilitating and CSF leak is one, chronic migraine wipes out people’s lives and cluster headache is an extreme, excruciating headache and I think all of these things deserve better. Funding better awareness, better care pathways and more research.
And so that’s partly why we at the National Migraine Centre are always banging on whenever we get the opportunity to talk about headaches and try and raise awareness of the impact of these types of headaches.
So any top tips from either of you? I just did want to ask you because I have heard some people saying that, so I know a patient of ours mentioned that caffeine was quite helpful. Is that a top tip or is that something you would say, no, don’t do that because you’ll get palpitations from all the caffeine. Any top tips? About how to deal with it or anything you would like, either people who have possible CSF leaks to know or clinicians to know?
Deborah, do you want to–?
00:41:49 Dr Deborah Kerr
Well, I think the first thing is trying to get the diagnosis. And so if you’re thinking I might have a CSF leak and you’re in the early days or you know weeks of your headache, then simply lying down all day can sometimes tell you whether or not you have got a postural headache, because if you lie down all day and you don’t get anything that day. Then there is more of a possibility that this is a postural headache. So I think I think first of all, it’s trying to work out, do you have one?
I do think in the early days that that you’re quite right, resting fluids and caffeine is recommended and I was told to take ProPlus, although it was never really quite clear what of those tablets to take, three or four times a day, is the instructions at that point. If you like coffee, you can just do it with coffee. I don’t.
00:42:49 Dr Katy Munro
Did that keep you awake at night or no?
00:42:53 Dr Deborah Kerr
When I was leaking initially I was sleeping for eighteen hours a day, having never been someone that slept for that long. I couldn’t stay awake every time I had a headache and I lay back down again. I couldn’t stay awake. So no, nothing kept me awake.
00:43:12 Dr Katy Munro
I learned a new word today. Obtundation. I was reading through some descriptions of the symptoms and it says, oh, may cause obtundation and I’d not come across that as a word and so I looked it up and it said obtundation is a state similar to lethargy, in which a patient has a lessened interest in the environment, slowed responses to stimulation, and tends to sleep more than normal with drowsiness in between sleep states. That’s what you had, isn’t it, obtundation?
00:43:45 Dr Deborah Kerr
It sounds like it.
00:43:47 Dr Katy Munro
And actually, I mean, I’ve had a bit of that today with this hot weather, but I don’t think I have a CSF leak. But yes, I think we love these jargony words, but actually sleeping excessively and feeling that fatigue even when you’re awake is a very interesting part of it and a horrible condition to have to deal with if you’re trying to work or look after a family as well.
Bern, any top tips we finish with?
00:44:13 Dr Bernadette Hard
Well, I would echo that that happened to me. I mean fatigue. But yeah, actually I was one of those people that, you know, I rode, I ran, I was a million miles an hour checking emails all the time and people would say that lying down would have driven me insane. Like I never sat down. And that withdrawal, you know that just leave me alone, I’m semi-here, but I’m not, I could just fall asleep. But detachment, you know. I think it was a blessing actually for me, because I was in such a mess that I had to lie down and actually I was fine with it, weirdly, but I think that can be really distressing for people who were close to you because they’re just like, well, this isn’t you. I was just, yeah. Leave me here. I might live. I might not. I’ll be all right. Figure it out. What about the horses? Well, they’ll have to, you know, sell them. I mean, literally it was like depression. I mean, I don’t know, it was a very odd state to be in. Detached, lethargic, disinterested. Almost not there.
So top tips I would say yes, caffeine and fluids and you know if you’ve got severe orthostatic symptoms. This isn’t something you can fight. You know people that say, you know, like graded exercise, pull yourself together, it’s just not possible.
But then the other thing I would say is, although it’s really hard to hear. Painkillers are not often the answer. You might have to use some of them just to get through the worst possible side of it, but they’re not, particularly opioid painkillers or even paracetamol. You then get into the medicine overuse side of things and then with the opioids you get dependent on them. They actually then start to cause worse symptoms. And then doctors get fixated on well, which painkillers are you taking and how many did you have? And so I just stopped taking any because it was exhausting to have to say no, this isn’t the painkillers. But actually they didn’t work after a short amount of time, they didn’t work.
And so finding other ways I actually found once, once you are able to move then get up, I think deconditioning is over underestimated how that adds complexity to the diagnosis and prolongs it, so if there’s anything that you can do not to decondition, do it.
And I would also, I mean what I did a lot of was actually learning to meditate, you know, so finding some non-medical way to manage the pain. And I would also say another, it’s not exactly a top tip, but it’s something to be aware of is that we don’t have the, you know, we don’t have the research, the evidence, it is anecdotal, it is case studies at the moment, but CSF Leak Association was part of a small study that looked at the impact that this had and one of the biggest impact was on people’s mental health. So you know, a third of patients that are considered suicidal. It isn’t just, oh, they get depressed. It is incredibly bad for your mental health. And that may be because who wouldn’t be miserable if they had a headache all the day. But there is now evidence to say that depression is linked to inflammation in the brain.
00:47:47 Dr Katy Munro
Yeah.
00:47:49 Dr Bernadette Hard
And if your brain’s not being cushioned and not being washed and, you know, nurtured then it’s likely to be in a horrible inflamed state. So don’t underestimate the mental health impact of this condition and get support for that if you possibly can.
00:48:09 Dr Katy Munro
I was also going to ask the both of you about the impact on your families because of course it has impacted your work because you’re too unwell. But what about your families? That must have been terribly worrying for them watching you turn from, both of you, very busy active working women to women who are really struggling with these symptoms,
Deborah, do you want to say, how did your family cope?
00:48:36 Dr Deborah Kerr
Well, I was very lucky I think that my children were older when this happened because I have no idea how I would have coped if my children had been young, I think it would have been impossible. I don’t know how I would have coped, but luckily they were at the youngest sixteen, eighteen and twenty. And so actually they were able to do things for themselves. They could go and get the shopping. I’m lucky, you know, I have a good marriage and a husband to support me. So he took over everything. So I didn’t have to do anything. I know it was quite terrifying for my parents.
Well, I think I had it at a time when luckily for me, everyone was able to step up and help me. But I think if I’d had young children, it would have been a completely different story.
00:49:39 Dr Katy Munro
Yeah. Yeah. And Bern, what about you?
00:49:43 Dr Bernadette Hard
Yeah, I would echo that that actually this is something that affects a lot of women who have young children, either because it’s post-epidural or just because that’s the age group. And I have no idea, because young children can’t understand that you can’t get up and play with them. And they need supervision. And they’ve got all this energy. I had two boys. They’d tear the house apart if I, you know, they didn’t understand if you’re not well and that could just physically and mentally destroy a person. My kids were seventeen and nineteen when this happened, and actually they were kind of left home alone because my husband flew out to Malta.
And it was really, really scary at the beginning because I wasn’t sure what was going on and I thought I might die because I did feel I was dying. So I sort of said to them on the phone the first night, I don’t think I’m going to die. Like, I don’t think I’ve had a brain haemorrhage. The CT was fine. But I thought there’s nothing I can do to prepare for this other than to say to each of them if I do die, you have to promise me now that you’ll look after the other one. They’re both boys and they’re both kind of very, you know, they don’t have a, they just went, yeah, no problem.
So that was awful at the beginning and then I think, yeah, they were there to help me a lot. Both of them, they were brilliant. And I also have a husband who is medical but also practical. And we could absorb it. But yeah, it’s horrible because you then start to feel that you’re letting everyone down.
00:51:20 Dr Katy Munro
Yeah.
00:51:25 Dr Bernadette Hard
So that impinges on the mental health side of it. You know, I’m a burden. I’m a nuisance to them, you know. Things like wanting to go to my son’s open day when he was about to go to uni and I forced myself to go because I just thought, I’m not missing out on this, but by the end of the day I’m going to be in agony and I’m going to feel really, really sick, but I’m just going to take it because I’m not missing this day, but having to make those choices. You know, it’s horrible.
00:51:59 Dr Katy Munro
Really, really hard. Yeah. Wow.
00:52:04 Dr Deborah Kerr
If I can just say I just think you have to really listen to your body and you have to lie down every time you need to. And I still lie down. I will be lying down later. I regularly have a lie down at work in the middle of my busy GP day, in the middle of the day I will have a lie on my couch. Luckily, I have a couch in my room and I can debrief my trainees lying down. I’ve got used to that. But you have to listen to your body and you have to lie down when you need to.
00:52:41 Dr Katy Munro
Well, on that lying down tip, I will say thank you both so much. This has been really interesting and, you know, it’s a really good overview of CSF leak what we should be thinking about and how we should be managing it, but mainly about that sort of impact. And being aware to get the diagnosis, because all the rest will follow if people think of it more often. So thank you very much.