Interviewer: For patients who have lost a limb, phantom limb pain is a very real and very painful condition. And what exactly is it, and how is it treated?
Today, we're joined by two specialists who really treat this kind of condition. Dr. Colby Hansen is Director of Amputee Program at the Craig H. Neilsen Rehabilitation Hospital, and Spencer Thompson, a doctor of physical therapy and a board-certified specialist in neurological physical therapy specializing in the treatment of amputees.
Now, when we're starting to first kind of understand what phantom limb pain is, why don't we go with that question to begin with? Dr. Hansen, what exactly is phantom pain?
Dr. Hansen: Phantom pain is the perception of pain in a limb that has been amputated. For someone who has lost their leg, they may still feel painful sensations as if they are coming from the missing leg, the missing foot, the missing ankle, etc.
Interviewer: What exactly causes that? And correct me if I'm wrong, there are no nerves there to be creating that pain, are there?
Dr. Hansen: Well, it's a good question. Pain signals obviously have to originate from the site of pain, and then travel through the nervous system up to the spinal cord, and then up to the brain.
And in our brain, we have essentially a map that represents signals that pertain to every part of our body. And so, even though we may have lost a limb, we haven't lost that map in our brain. And so it can still perceive signals going to that part of the brain, which may be then perceived as coming from the missing part of the body.
In addition to that, the residual nerve in the remaining part of the limb that would have gone to that part of the limb is still there, and it can also send signals originating from there up to the brain which can be perceived as pain.
Interviewer: And how severe is this pain?
Dr. Hansen: It's very different from person to person. There are some people who may not feel pain, but they may feel the sensation of their limb. We call that phantom limb sensation. And then there are people who may have very severe phantom limb pain, and then there are going to be those who have perhaps only very mild or very intermittent phantom pain experiences.
Interviewer: I want to shift over to Spencer Thompson. Spencer, when you work with these patients, as an outsider, it's a little confusing, right? If someone has a twisted ankle, a physical therapist works on that twisted ankle, right? In this situation, it seems more that there is a neurological almost perceptual type pain happening. How exactly as a physical therapist do you help patients with this condition?
Dr. Thompson: I think understanding first how frequent it's happening for them gives understanding to how to best treat it. But one of the ways that I've found that's an easy way, that's not medication so it doesn't really have any systemic effects on the patient, is something called mirror therapy.
Like Dr. Hansen talked about, that pathway, that map is already in their brain, and sometimes that system gets ramped up where it feels like . . . sometimes people feel like their foot is twisted or contorted in a certain position, or they get those zaps of pain. Because that part of their leg is missing, what we want to do is train the brain in the sense that that part of their limb actually can move without pain. And the way we do that is with the mirror.
Interviewer: Is it a special mirror?
Dr. Thompson: No. I tell people to just buy a door mirror at Walmart for $15 or whatever. What you do is you put that mirror in between your legs. And you can do this with an arm as well, right? But you want to in a sense block your amputated side. And the mirror is going to show the reflection of the intact limb, whether that's the arm or whether that's the leg.
When I teach this to patients, what I tell them to do is their whole focus needs to be on the reflection of that intact leg, so that reflection is covering the leg, their amputated side. It looks like when they're looking over there . . . Say the left leg is amputated, I have the mirror on that left side, but it's showing the reflection of my right leg in that mirror, so when I'm looking in the mirror, it looks like that's actually my left leg, if that makes sense.
Interviewer: Oh, wow. Okay.
Dr. Thompson: Then, what I do, or what we tell patients . . . I work a lot with more lower limb, so I'll just describe what you do for lower limb, but it could be the same for upper limb type of thing.
I tell them, "I want you to keep your whole focus on that mirror, of that reflection of the intact limb, because we want to train your brain that is there, that it can move without pain." And then I teach them to move that ankle up and down, move it in and out, move it through circles in all directions, spell the alphabet with that ankle, kick the leg in and out, move the hip up and down, in and out. Any type of movement like that that can be moved through a pain-free movement, you're sending signals to the brain that that leg can move without pain.
Interviewer: The leg that is not there?
Dr. Thompson: The leg that is not there, but by looking at that reflection, you're sending input into the brain telling the brain that that leg can move without pain.
You can try it yourself, even if you're not an amputee. It's a little trippy at first. When the patients try it, they're like, "That feels so weird." But it's cool.
The biggest kicker with it is it takes consistency. Any time you're training the brain for something, it takes a lot of repetition, it takes consistency, it takes effort.
There's research out there. There are more research studies that need to be done to continue to prove efficacy of this, but protocols that I recommend is doing it for 5 or 10 minutes every day for 4 to 6 weeks.
And people that I've seen that have committed to that, there's a variety of results. Some people, it doesn't work. Some people, it does.
Some people feel like the edge of their phantom pain is taken off. We call it telescoping. The phantom pain may be on the distal end of their leg, in their foot. But sometimes that pain travels up, so it's not necessarily in their foot. It kind of travels up a little bit, and it's not as intense.
And some people, it helps out quite a bit. Or if they have an intense phantom pain session, they do it, and it just kinds of melts that pain away.
But biggest thing I would say is . . . I talk to people, and I'm like, "Have you tried mirror therapy?" They're like, "Yeah. I tried it, but it didn't work." When I kind of explore a little bit more, I find out that they haven't really done it on a consistent basis. They've tried it four or five times and it didn't really maybe have the effect they wanted, and so they stopped doing it.
And so my biggest thing was if you really want to see if it works, give it a shot, but be consistent with it. Shoot for every day. Put a timer on your phone for five minutes and be consistent with it and see what happens.
Interviewer: Now, Dr. Hansen, I guess I'm just a bit of a layperson here, but a $15 mirror that you can get at a big box store can significantly help with your pain. What exactly is happening, I guess, in the brain, in the nerves, with this therapy to have it work?
Dr. Hansen: Yeah, it's a good question. I think the simplest way to maybe try to conceptualize what's going on here is we have obviously five senses, right? Touch, smell, taste. Vision is one of our strongest senses and drives some of that pathway to that part of the brain represented by that missing limb. I think we can start to replace some of those pain signals going there with healthy, normal-feeling normal movement type of signals going there.
When we can have this visual input that's looking as if we're looking at our missing limb and that it's there, and if we can harness that input, which is very strong, to then do some of those things that Spencer was mentioning, move the phantom limb through the mirror in these different ways and not reconnect but sort of drive some of that pathway to that part of the brain represented by that missing limb, I think we can start to replace some of those pain signals going there with healthy, normal-feeling, normal movement type of signals going there.
Interviewer: Dr. Hansen, say there is a listener who either they themselves have an amputated limb or there's a loved one with an amputated limb, and they are dealing with some of these phantom sensations, phantom pain. Where do they start? Is it a general practitioner, is it a specialist, is it a physical therapist? If they need some help, where do they go?
Dr. Hansen: Good question. I would say the place to go is a high-level rehabilitation center that sees a lot of these complex types of patients. There may be some sort of small community rehab centers that don't see this very often. Usually at bigger centers, not just academic medical centers, although most academic medical centers should have the expertise. I am a rehabilitation physician, but not all rehabilitation physicians do amputee care. Sometimes orthopedic surgeons may do amputee care and do a very good job.
But I would say you start by looking for a large medical center that sees and treats complex rehabilitation types of patients, and then likely you'd be plugged into hopefully an amputee clinic at our institution run by myself as a rehabilitation doctor, but also that incorporates other expertise, like physical therapy or rehabilitation psychology, etc.
Interviewer: Spencer, for a patient who might be dealing with this kind of pain, what is something that you tell either them or their loved ones about what they can expect with working with a physical therapist to treat this condition?
Dr. Thompson: PTs, I think sometimes people think we're just mean people, that we just like to . . . We have this tagline that's "PT stands for pain and torture." I mean, yes, it does take work and sometimes pain, just like working through anything to improve, but we're here as huge advocates for you. We're on your team. PTs, our goal is to help improve your daily function and mobility and to get you back to living life to its fullest.
I would say for patients, give yourself some grace, some compassion. You've been through a lot. Your body has been through some significant changes. Just take a minute and breathe and just acknowledge all that you've been through and all the . . .
I tell all patients that I think the media sometimes does the amputee population a disservice in some aspects, because we see all these Olympians that are doing these amazing things, which is awesome that they are, but people sometimes have this expectation of, "Once I get my prosthetic limb, I'm going to be out running, doing all these amazing things." But the media doesn't also show the phantom limb pain that people experience or just the different trials that they do experience.
And so don't compare yourself to what's shown in the media. Just take it a day at a time. You're going to have good days, you're going to have days that are harder, but just be patient with yourself and just know that day-by-day, it's going to get better.
There is hope. There's help out there. There are great resources. We run an amputee support group here through the University of Utah that I run. There's a company called the Amputee Coalition. There's support out there. You're not alone in this. Talk to other people that get it, talk to professionals that understand, and I think just build your team around you that can help support you, and be patient and give yourself grace in this healing process.
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