Phantom Pain

This BBC podcast is supported by ads outside the UK. It's time to see what you can accomplish with Shopify by your side. So, we can now listen to your podcast. The power of science. I mean, do we always have them? I mean, the hit rate's pretty low. But it is with science. It is with science. We've got a bit more of a serious curious case for us today, Dara. Okay, that's fine. We are talking about people who have lost limbs or parts of their bodies and still have sensation in those parts. The phantom pain. Yeah, phantom pain or phantom itching. Yes. Yeah, I have a cousin who lost his arm when he was a teenager in a farming accident. And I remember going to visit him in hospital and he was doing OK. It's like obviously very kind of shaken by the whole thing. But he said that the thing that was bothering him the absolute most was that his arm, which was no longer there, was really, really itchy. Can you imagine? There's no way of... No, you can't satiate it at all. It's sort of in the night would be kept awake by this like need to scratch a limb that was no longer there. Extraordinary, isn't it? It's an incredible thing. I mean, how was he when he was losing an arm as a teenager? I mean, obviously that's an incredibly tough thing to live through. He, as an adult, this is similar to me, he has this extraordinary sense of humour about his prosthetic. What he'll do is, especially if you meet him and don't know that he has a prosthetic, he'll sort of go to shake your hand and then detach his arm and leave you holding it, which I like quite a lot. Or, you know, I've been clubbing with him many years ago and if a song comes on that's like, wave your hands in the air, he'll take it off. No, he won't. Chuck it up in the sky. Oh, I love that darkness. I love that. He's a good lad. To be able to play with it like that, I find that deeply impressive. Absolutely. Absolutely. Well, we have a question that's come in today about this idea of phantom pain. It's come in from Jack, who emailed us, curiouscases at bbc.co.uk. And here's what she wanted to know. Hi, I'm Jack. I'm in London. And I've always wondered about phantom pain. As someone who lost an internal organ years ago, I still sometimes feel pain from it, even though it's not there. I'm wondering, where do the nerve sensations come from? I mean, I've always wondered if you lose an organ or you have an organ removed, do you sense its absence? Or people who have tumours and then they're removed, do they? We have senses around our body, but they're vague at times. I actually, I mean, I have had an organ removed. I've had a radical hysterectomy. And I was deeply disappointed because, you know, I had a tiny bit of warning. I went in. I was expecting when I came out, in terms of feeling its absence, I thought I would come out really thin. Not one bit of change. Can you imagine? How unfair is that? In this discussion, we're going to confine ourselves essentially to the issue of a phantom sensation of something. And specifically pain. Yes, which is why we've helped here from a couple of expert guests. Tamar Maiken, Professor of Cognitive Neuroscience at the MRC Cognition and Brain Sciences Unit at the University of Cambridge, where she leads the Plasticity Lab, and Lynn Williams, an upper limb amputee with personal experience of phantom limb pain. First of all, Tamar, can you explain just in a nutshell what we mean by phantom pain? It's simple. It literally means experiencing pain coming from outside of your body. we tend to think about it in terms of someone that used to have a complete body, was amputated, let's say lost an arm like Lynn, and now feels the pain coming from the body part that is no longer there. She knows that the body part is missing, but she can't help feeling sensations. And these sensations can be uncomfortable, itchy, unpleasant. and when they get into the unpleasant painful range, we would call this phantom pain. And how long have we known about this or how long have people been registering this? The first record, clinical record, is like 16th century and we've been hearing about it ever since. And there's these really famous kind of historical cases like the card famously used this as evidence that we should not trust our senses. Admiral Nelson, who lost his arm in battle, he used his sensations as evidence that the soul exists. And then others were not as kind, so we have some very unpleasant documentation from the mid-20th century, actually from here in London, saying that phantom pain and phantom sensations are evidence of hysteria or denial and mental instability. But thankfully now we all agree that phantom pain is very much real. And so it has a tendency not to be taken seriously or historically wasn't taken seriously? Historically, it has not been taken seriously because, you know, how do you treat a body part that is no longer there? I mean, as a doctor, you know, if someone reports pain from outside your body, what are you supposed to do about it? And how common is it? It's hard to say. It goes back to the question of before, what is phantom pain? Because ultimately it's subjective and it's down to people to decide. So the reports are really, really varied. The one thing we can all agree on, it's extremely common. If I have to put a number on it, I'll put 64%. I can explain why I came out with this number. So rare to be so reluctant and men so precise. But nonetheless, it is still a substantial number. 64% of all amputees would undergo this kind of sensation. I mean, that's extremely common. I would go as far as saying is every amputee I've ever spoke to at some point experienced something like that. So maybe not chronically, maybe not for, you know, 20, 30 years, but many people do. Lynne, you're an upper limb amputee. I am. Above elbow. Right arm above the elbow. Left arm. Left arm, excuse me. It is, isn't it? Do you know what? I'm just not good with left and right. You're talking to a left-handed woman trapped in a right-handed body. Oh my, that's a whole other level of stuff. Can I ask you, by the way, If it's okay to ask you, when did this happen? At what stage in your life? This happened in 2009. I was diagnosed with an extremely rare cancer called a malignant peripheral nerve sheath tumour in my forearm. It was stage 3 The Royal Marsden did what they could but after three months it became obvious that amputation was the only way to stop it going to stage four So in May 2009, they amputated it above the elbow. And I've been living with phantom limb pain ever since. And I've always wondered, do you also get a sensation of the arms just presence? And the way that we close my eyes, I can see where I know where my arm roughly is relative to my body. Yes, I know exactly where it is. So it's like it's there, but not just in a pain or an itching way, like whatever, but its presence is still... No, the arm sensation, I can feel it down to the tips of my phantom fingers. Where is it now? My phantom arm is positioned at a right angle. So if you imagine you've got your arm in a sling and the hand is clawed, it doesn't move anymore. For the first couple of years, it had some movement. It was as if there were signals going off in all directions. so my phantom arm was moving it was moving in ways that a physical arm really can't I remember at one point feeling my fingers go through my palm and come out the other side and I mean just things you couldn't possibly imagine a physical limb doing and I was having these crazy sensations but over time it stiffens up and freezes and just stays in one position and it's in that position the whole time, very tense and always in that arm in a sling position. Wow. Yes, because we've only just touched about how you could feel a sense of where it is and the shape it's in, this phantom arm. But as I get the more extreme feelings you've had, you've had pain. What's the nature of the pain? Right, well, OK. This is a description that I have evolved because people ask me this and I've had to explain this down the pub untold times. Imagine you're wearing an opera glove. so one of the extra long gloves, and you've cut the ends of the fingers off. Everywhere that glove touches your arm is crushing and burning at the same time. The burning doesn't have heat in it. Some people do. Mine's more towards the cold. I'm susceptible to cold rather than heat. So it's continuous, simultaneous crushing and burning. And the ends of those fingers where you've cut the gloves off are all swollen up, Like, you know, when you were a kid and used to tie rubber bands around the end of your finger, it's that only much, much worse. So that's the baseline pain level. And then you get the spikes and the surges. The surges you can feel coming. And that's just a massive intensification of what I've just described. The spikes come without warning. And they're like little lightning rods that get stabbed into various bits of your hand at random times. And some of them are worse than others. Some of them I can manage without completely zoning out of my surroundings and some of them just knock me right on my backside. And that's pretty much how it works. And that baseline is all day? All day, 24 hours a day, seven days a week. Since 2009? Since 2009. Goodness me. Is this a common experience that you hear from amputees? Lini does have high pain, so she's at the high end, but qualitatively it's very similar. Wow. And do we have any idea what's going on? We have some clues. We know a few things. Can I introduce you, Crash Course in Neuroscience, just to allow me? Please do, absolutely. Okay, so any information that is coming from your hand is mediated to the brain through this nerve in the periphery that feeds to the spinal cord and from there it goes to the brain. Now, when you get amputated, that nerve gets amputated. And we know that this nerve doesn't just shrivel up and die. It is actually hyperactive. So it's feeding a lot of information to the brain through the spinal cord. And this information we know contains the lines that are used to provide information about pain, about temperature, about position. So it's feeding a lot of this junk information. And a lot of us think that this is contributing, if not causing, I think causing, phantom pain. Now, the other part happens in the brain. Pain is a subjective experience, as we said. And a lot would depend on how the brain takes this information in. And there's this very, very dominant theory that says that the reason that Lynn would have phantom pain is due to what they call maladaptive brain plasticity. And the story is that once you lose input from the hand to that part of the brain that controls it, this again would cause some changes. The cells of the brain that are in charge of the hand are not going to die. They're going to do something else. They take over some jobs from the neighboring brain areas. And that would be for humans, the representation of the face that neighbors that of the hand. and according to this theory this would cause some mismatch or an error signal between the new inputs coming from the face and the original architecture for the hand area and because all of this is happening in the part of the brain that is responsible for the hand the experience will be pain coming from the missing hand. So it's like you've got this body map in your brain and it sort of gets miswired as it were after you're amputated. So that's the prominent theory I strongly oppose it. What's the research that leads you to think it actually occurs in a different way? So this was actually the first time I met Lynn. I invited her to my very first... It's Lynn's brain, basically. That's what's changed your mind. Honestly, it is. That first research you've done... Do you remember it? Brain PO9, that's me. If you ever want to know just how stupid my brain is. Just go research that research paper. It's all there. Well, it sounds like your body map isn't quite miswired in the way that you thought. Yeah, so it's kind of perfect, right? So it was the very first study we did. It was with brain imaging with functional MRI. And we invited Lynn and a lot of other amputees to take part in the study. And we had control participants with two hands. And we wanted to see both hands in controls. And then the good hand, the intact hand in amputees. And then the face, you know, changing up in amputees. So we had all these conditions. And just to be precise and give people the same experience, I wanted to have the exact same conditions in intact controls and in amputees. So I've asked Lynn and everyone else, can you try and move your phantom hand? Because they all say they can feel it. You know, you say you can't move it. But I think if you're focusing and I'm asking you to do your best, you will generate some small, even micro movements. Micro movements, definitely. So back then I wasn't fast. It was just a junk control. I didn't have any intentions. It wasn't a real study, that part, right? And then you look at the brain, and this is something you can see in individual participants. I analyzed their results, and boom. You can't tell the difference between amputees and controls. They all have two hands as far as the brain is concerned. And qualitatively, with my naked eye, I couldn't find a difference. So then I ran, you know, detailed analysis, and I still couldn't find a difference. The whole theory is that that brain area gets wiped out from its original, like, function and gets taken over. No taking over. You have a very nice symmetrical face slain in your brain. Same as everyone else I scanned. And, you know, that kind of started a research program that really demonstrated study after study after study that it's just not true. There's no reorganization. That brain map just stays stable regardless of what happens to your nose, perhaps. And the last study we did which was just published this year we had this opportunity to scan a few brave amazing women who like Lynn were required to undergo an amputation to save their lives And with everything that happening you know preparing for the amputation fighting the condition that caused the amputation, they took a couple of days from that routine and came to the lab and allowed us to scan them before the amputation. Wow. And then they came back after the amputation, over and over and over, one of them up to five years after. Wow. And then we can compare like with like. The same person. The hand before, the phantom hand after. No difference. Starting a business can be overwhelming. You're juggling multiple roles, designer, marketer, logistics manager, all while bringing your vision to life. Shopify helps millions of business sell online. Build fast with templates and AI descriptions and photos, inventory and shipping. Sign up for your 1 euro per month trial and start selling today at Shopify.nl. That's Shopify.nl. It's time to see what you can accomplish with Shopify by your side. Where a cost-effective insurance is possible? Go to asr.nl slash duurzamekeuzes. This is ASR for you and a more expensive community. ASR does it. So, we can listen to your podcast now. who's written about phantom organ pain. Carlos Roldán is an Associate Professor in Pain Medicine at the University of Texas MD Anderson Cancer Centre. Carlos, can you tell us about your encounter with a patient who had phantom organ pain? Indeed, there's a few, not too many, case reports of different organs besides limbs that have been reported as phantom pain. It's not the most common description of phantom pain, but it's been associated to breast, penis, eyes, teeth, and other organs. And I just published a case a few years ago about kidney. Very unusual, but in those particular cases, everything has to be ruled out before you consider it to be a phantom pain. And this patient had a kidney removed and then had a phantom sensation of pain afterwards? Correct. After we changed the approach of the pain management, the pain eventually subsided. And Zaid, which way did you change it? Were you able to change in a way that's acknowledged that this was a phantom pain? Yeah, I think there are multiple factors for success of this case. So number one, he was being treated with opiates. Everybody was just prescribing opiates without any awareness of what else could have been. We gave him anticonvulsants. That's when he started feeling some relief. But I think what eventually helped the most was cognitive therapy, making the patient aware that that was probably the cause of the pain. That make a big difference. So probably that put to rest the patient, the concern about having something else. And then it was referred for cognitive therapy. And eventually that's, in my opinion, what it helped the most. And is it rare? Because, I mean, we have been doing transplants and organ removals for various reasons for a long time. But is it very rare, this kind of pain? Absolutely, especially with a visceral organ. So if you think about other organs that you have more awareness of the location, like anything external, the eye, the teeth, breast, peanuts, things like that that you can see and touch, this is probably something you expect that to happen. But in a visceral organ like the kidney, that will be extremely rare because visceral pain is usually non-well localised. You can point to your back, but you cannot say, this is my kidney. You just have back pain. You cannot tell if it's from the kidney or from somewhere else. As a doctor and a professor of pain medicine, presuming there are pharmaceutical options that can help some people who experience phantom pain. That's correct. There's not necessarily one single medication they weren't expected to solve the problem. So each case is to be looked up independently because every patient has a different situation and some patients benefit more from some medication than others. So there's really not an ABC or one to three pathway to treat phantom pain that applies to every single patient. Dr. Carlos Roldan of the University of Texas MD Anderson Cancer Centre thank you very much for joining us You're very welcome thank you for inviting me So okay if this theory about the brain rewiring in an incorrect way and that being the cause if that theory falls what does all of this mean for how we treat phantom pain then? So the treatments that were following that theory first and foremost mirror box treatment very famous treatment you reflect through a mirror your intact hand so that it is aligned with your missing hand and that is designed to trick the brain to think the hand is still there. There's lots of derivatives for it currently with virtual reality, with augmented reality trying to come up with a very kind of engaging environment to train your brain to normalize the representation of the hand. the evidence is now accumulating to show that this technique or these techniques this range of techniques is not more effective than placebo wow the problem is they've never done proper randomized control trials because it was such a special weird treatment so now the science and the clinical evidence is aligned these techniques are not helpful lynn how do you handle your pain now? Well, now I have a pain management consultant, marvellous woman. Every three months, I have to go and have about 16 Botox and combined Botox steroid injections in the back of my neck, in my skull, in the masseter, in the jaw, because the phantom limb pain, the stress of holding that pain is held in my neck and shoulders. Wow. And it's done untold damage. Like the tension. Yeah, I've lost teeth to this pain because nobody saw this coming. So that keeps that under control. I have ketamine for pain relief. My body does not tolerate morphine and morphine-based drugs. They gave me too many of them when I had cancer. And more recently, medical marijuana, which was introduced to me by my NHS pain consultant, and that is basically the extent. It doesn't hit the phantom limb pain directly, nothing that's been tried does that what it does do is dampen down all the knock on effects and knock on pains and knock on problems from that which gives me enough mental energy back to for the most part to manage the worst of it but of course it can get out of control at the drop of a hat in which case it's you know down tools, pick up, vape, cat on lap, do nothing until it goes Must be extremely difficult to sort of accept that over time It's taken a long time. Yeah. It really has taken a long time. But, you know, I realised quite a long time ago now that I had to wrap my head around the fact that this was probably going to be my status quo for the rest of my life. I do wonder about the wrapping your head around it part of it, as it were, the sort of the acceptance of the situation that you're in. One other line of treatment that sometimes is used for phantom pain is psychotherapy. And we're going to hear now from Karen Fisher, who's a consultant clinical psychologist. who worked in the NHS for more than four decades most of it focusing on pain management at the Royal National Orthopaedic Hospital including with their prosthetic centre Because we believe that the phantom pain is coded in the central nervous system, what we're trying to do is train the brain to respond differently to the signals that the nervous system is sending. So quite a useful technique, and the one we use a lot, is imagery. So we start off with using mindfulness exercises, getting people into some sort of focused state. And then we get people to explain to us what symptoms they feel in relation to their pain, what it feels like, what images it creates. For example, if it's a throbbing pain, we say to them, would it make sense to think of the throbbing as a bass drum in a marching band? And let's try developing an image of the marching band walking further and further and further and further away. And as it departs out of your line of sight, it takes the pain away with you and the pain gets less and less. And we practice and we record the session and we get the patient to practice at home. And gradually we would expect the person to get control of the pain so that when it becomes a difficulty, that it intrudes on activities that they're trying to achieve, they would be able to switch quickly into imagery, mindfulness mode, send the pain away with their marching band, and then return their attention to the task that they were working on before. I absolutely agree with her that there's, you know, in my language, I would say top-down modulation from the brain that can, you know, turn the pain down. And if you can learn to harness this power that exists inside all of our brains, that that's a really wonderful tool to learn to harness, but it's a lot of hard work. It's not just a switch you turn on. It's something you need to learn very carefully to do and requires a lot of intention and a lot of deliberation. The treatments I'm currently most excited about as a scientist in these early days are surgical techniques that are specifically designed to calm that nerve that we've been talking about down. So how do we make it not fire all this junk information to the brain? Because there are some things, is it Relim, the reconstructed service for amputees? Tell me about that. Yes, so they are using a bunch of surgical techniques designed to find a good biological, physiological home for the severed nerves. So in one of them, you take the nerve and you latch it onto an existing nerve so that it can kind of latch onto a muscle so that it can grow into the muscle and receive inputs from the muscle rather than just make up its own input. I guess the ultimate aim is to make it so that the nerve has a function again, has some sort of real input again. So it doesn't have a real function. Sure. But it is... Trick it into thinking it's got a real function. Yeah. You just don't want it to grow onto itself. You want it to stay put. So you kind of give it a task. Yeah. Milded hands. It's sort of just suddenly reminded of, you know, mothering toddlers and being like, right, fold all of these important things. Distracted away from calling. Is that how we should be treating nerves? Any more hassle. As toddlers, essentially. Is that where we are? If we could just stop this nerve being a pain. In every sense of the word. Is there anything that you'd like to tell people about phantom pain? That's a tricky one. People are always curious about it. I think one of the messages I like to get across is the fact that, you know, this is very, very common in people with limb difference. Really, it just needs more awareness. It still feels like it's down to individuals like me to just literally you're going out there and explaining it like one person at a time. It's weird. OK, that's all I can tell you, listeners. This is one of the weirdest things. It's like being haunted by the ghost of your own limb. So I think I would say, you know, if you know anyone with limb difference and also if you know anyone who is having an organ removed or even having a tooth removed or whatever it is, just be mindful that this kind of strangeness can happen and if someone steps to you with this take them seriously Well hopefully what you've said to say will help in some small way having to constantly explain this problem but more than that the best of luck with your journey to finding some relief from it Thank you Thank you very much Lynn Williams and to Mara Mack and thank you very much for coming as well Can I say one thing? Oh you can yes If you want to help with the research we always need volunteers who have lost an upper limb to amputation so please reach out to the lab in Cambridge we are the Plasticity Lab Of the many things that are surprising there is just the sense of just how common this problem is for something that's still spoken of I think like it's shell shock like it's a thing from the Victorian era a long ago war but actually it's a really really common problem well yeah I mean, she said specifically 64% was a conservative estimate. Yes. And it'd just be nice not to, I'm presuming that's it, it'd be nice not to have to explain it over and over again. So there, there you go. It's been explained now. So can we just move on from there? That's at least one tick on the board. Yeah. Next stop, understanding what it is, and long down the line, maybe offering some sort of a solution. Look, we didn't probably deliver everything, but at least we brought you the news of it. 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