Still Standing with Staff Sergeant John Kriesel

Episode Transcript

Dr. Correa:
From the American Academy of Neurology, I'm Dr. Daniel Correa.

Dr. Peters:
And I am Dr. Katy Peters. And this is the Brain & Life Podcast. Well, hello listeners, and Daniel, I hope you're doing well today.

Dr. Correa:
It's been a good day. There's always so much that happens at the hospital and medical schools, but really it's one of those days where I feel like every turn I'm getting a lot of energy and positive support from people around me.

Dr. Peters:
Well, today is when we honor our veterans who made an ultimate sacrifice on D-Day. I know you served in the military. First of all, I want to say thank you for your service and can you share with us about your time in the service and what you did particularly?

Dr. Correa:
Thank you and to everyone for the support. Really, for me, it started seeing my dad and other family members dedicate years to their military service. Personally before that, I didn't really think about being a soldier myself. I was really into sciences. I was a nerdy little kid thinking about biology, and it was a primary doctor who kind of challenged me to think about being a doctor. And it wasn't until I decided to go to medical school that I was inspired by the idea of being a doctor who could help support others like my father and the families I grew up with when we were moving around to different military bases. And so I hadn't really thought of the idea of a military doctor until those two things came together.
And it was a true honor really training as a neurologist in the US Army at Walter Reed, and then later working at Fort Ordnance in Georgia where I helped support a clinic that was dedicated to take care of the rehab of soldiers living with traumatic brain injury and many chronic TBI symptoms. At times, like we all have, I had some challenges with my military service or that we all experienced with jobs, and some were unique to military service. I didn't go through some of the many challenges that other families and individuals had to go through. But more than anything else, I got more from the soldiers and the families that I helped take care of than I had to give in terms of the challenges that I encountered. So it's been truly a great part of my life.

Dr. Peters:
Well, I had the opportunity to speak with John Kriesel. He served in the Minnesota Army National Guard and he became a staff sergeant. He then served in Iraq at Kosovo, and unfortunately during his service, he lost his legs. He had to deal with the condition known as phantom limb syndrome. This is where patients can experience sensations, they can be painful or they may not be painful in a limb that no longer exists physically. It can be pretty common among amputees and it can be challenging to treat, but his story is quite compelling, inspiring. I'll also mention that he recovered at Walter Reed and he had a lot to say about that facility and it was all very complimentary. And it's really an interesting conversation with him. And we will sort of add on later in this episode that we'll talk with a medical expert on phantom limb syndrome.

Dr. Correa:
And really because of the high rates of those types of limb injuries in the last wars, a lot more soldiers have had to deal with. But phantom limb syndrome and amputations and what comes from it is something that so many different people in the community live with and they have experienced from a variety of other types of conditions. So I really think this is something we all should learn more about, and it's something amazing to also hear about how the brain works. I'm really interested to hear how the medical expert describes that.

Dr. Peters:
Hello everyone and welcome to our listeners on the Brain & Life Podcast. I am quite impressed by the roles that our guest has had or does hold. John Kriesel served in the Minnesota Army National Guard and became a staff sergeant and then served in Iraq at Kosovo. During his service, he unfortunately lost his legs but never lost his spirit. He returned to Minnesota and continued a career of service, notably as a director of veteran services for a county and suburban Minneapolis, it's one of my favorite big cities, and member of the Minnesota House of Representatives. Now he continues to support veterans issues, particularly in the Twin Cities and is a motivational speaker and frequent speaker on KFAN Radio.
He published his experiences in the book, Still Standing, the Story of Staff Sergeant John Kriesel. He will not only discuss his life, his book, but also his work with the veteran community and the neurologic phenomenon of phantom limb. And this is a condition in which patients experience sensations, sometimes painful, sometimes not, in which a limb does not exist. It's been reported in upwards to 80 to 100% of all people that have had an amputation. So I just want to say a big Brain & Life welcome to John. Welcome, John.

John Kriesel:
Thanks for having me.

Dr. Peters:
Absolutely. Now, I know I gave you a little introduction. Can you just tell us a little more about yourself and where you're joining us from?

John Kriesel:
Yes. Like you said, my name is John Kriesel, live just south of St. Paul, Minnesota with my wife Kayla and our almost five-year-old little girl, Chloe. Served 10 years in the Minnesota Army National Guard, Minnesota House of Representatives, serve as a veteran services director for Anoka County, which is just north of Minneapolis. And then I'm on KFAN once per week on the Power Trip morning show and motivational speaker. So I get to travel to the United States and even had one in Jamaica this year. So life is good. Life is darn good.

Dr. Peters:
And I want to say also thank you for your service and thank you for what you're doing for our veterans. I really appreciate it.

John Kriesel:
Thank you.

Dr. Peters:
Tell us a little bit more about your book, Still Standing, your story.

John Kriesel:
Yeah, so we published it the first time in 2010, and then life changed so much that we republished in 2018. It has won eight national book awards. And going through what I did, I mean, every day I wake up, I'm reminded of losing my legs in Iraq in a bomb blast. And I almost can't believe it even though it's my life and I don't look at it in a negative way because it is what it is and I'm not wired to be able to look back and say, "Oh, why me? Poor me," whatever. It is what it is. But it is a crazy story. It's insane. And so what I wanted to do wasn't to just write a book just for the sake of writing a book, but I wanted to teach people the things that I've learned without them having to go through it.
And that's also why I give the motivational speeches that I give is so people can kind of walk in my shoes and go through what I did and maybe take those lessons and give them perspective on adversities that they're going through. And it's probably not going to be losing limbs in a bomb blast, but it could be a loss of a loved one, loss of a job. We all go through adversity. And so the book is a, I mean, it's a look into my life, but it's a way for people to learn all of those things. They can see that I use humor to get through everything. And so yeah, I feel very honored that the book has been so well received and so many people have got to read my story.

Dr. Peters:
Well, congratulations on those awards, and I really do hope the Vikings do better this year. I'm cheering them on.

John Kriesel:
Well, thank you.

Dr. Peters:
I'm a fan from afar 'cause I do like Minneapolis. But that has to be so traumatic. I read that you actually woke up at Walter Reed and sort of had to contend with the loss of your lower limbs. Could you tell us more about how that happened and how that came to be?

John Kriesel:
Yeah, so I say I'm fortunate, and it's a relative use of it, of course, to have been awake after the bomb blast. So we were on a patrol, we were going to a spot where someone had been digging in the road, and so we were confident that they were burying an IED. The vehicle ahead of us missed it. We hit it. It was 200 pounds of homemade explosives that detonated directly underneath our vehicle. And so I was briefly knocked unconscious, but I woke up a few seconds later while the rocks and dirt was still falling down from the explosion. It sounded like a hailstorm. I remember feeling myself in a twisted contorted position. And so I knew I'd been injured, but I didn't know how badly because I hadn't really feel any pain at that point. And so I looked down, I'd been ejected from the vehicle, and I noticed that my left leg above the knee was a compound fracture.
I could see my femur and my right leg below the knee looked like I stuck it in a wood chipper and was bleeding profusely. So I was quite certain at that moment that that's where my life was going to end. Thankfully, my friends in the vehicle ahead of me rushed back to put tourniquets on and save my life and get me stabilized until the medevac helicopter got there. I've been told 11 minutes later, I've been told 18 minutes, somewhere in between there. And that's a remarkable response time. So I remember everything up until being lifted off on the helicopter. I will never forget, and I never want to forget what it felt like to lay there on the dirt road in Iraq, just outside of Fallujah and coming to grips with the fact that at 25 my life was going to end.
So fast-forward eight days later after having been to two field hospitals in Iraq, where the first one I was shocked back to life three times, that was Al-Taqaddum Airbase base. Then they sent me to Balad, stabilized me further. Went to Landstuhl, Germany. That's where my situation deteriorated enough that my family was flown over basically to say goodbye. But they did not give up on me, those physicians all along the line did not give up on me, kept me alive, and I woke up at Walter Reed eight days later. And that's when everything hit me like a ton of bricks. And the loss of my legs was one thing. I was confident that those were going to be gone anyway if I had survived, but I lost two of my best friends in the blast. They were killed.

Dr. Peters:
Oh no.

John Kriesel:
And so that was absolute devastation 'cause we had all our plans, what we're going to do in life. And I mean, early twenties, you have so much life ahead of you, and these were two of the nicest, most selfless guys I've ever known. And so learning that made my injuries seem so insignificant because I knew that at the end of the day, I still had my life ahead of me. It was going to be changed. I was going to have to make adjustments and really figure things out and be creative, but I was still and have been since then able to do the things I've always done, but just have to be a little more creative about them. And so all of those things just kind of wrapped up together. I would say that I'm one of the luckiest people to be alive in this planet.

Dr. Peters:
Well, I'm glad you're here and just honoring your service and the service of your colleagues and friends and your service members. I mean, I can't even imagine. How did you get through those initial months? How did you manage?

John Kriesel:
Awesome, awesome team of physicians, physical therapists, occupational therapists at Walter, Reed Army Medical Center. Truly the finest institution that, I mean, I'm so thankful that that's where I ended up. Everyone had kind of the shared sacrifice. I had so many of my friends from high school fly over. I had my buddies from Iraq calling to check on me every day. My best buddy, Tim Nelson, who is my squad... He was in the same bomb blast I was in. He stayed in Iraq and he would call me to give me updates on how they're doing, all that he could update me on. But I knew that every day I woke up, I was going to be safe. And I worried about my friends that were still having to go on patrol after losing the two friends we did. And then another friend in a separate incident a month later, these guys still had to wake up every morning and go do their job knowing that they might not make it back to their bed that night or to their family back home at the end of the deployment.
And so all of that just I used as a motivator. And I realized that no matter how badly I wanted to change what happened to me, and no matter how badly I wanted to bring my friends back from being killed in the incident, I couldn't. That was out of my control. But what I could control was my attitude. And if you told me when I was laying on the ground and basically could hear my blood squirting into the ground when I thought I was for sure going to die, if you told me at that moment, "Hey, hang in there. Keep your chin up. Not only are you going to live, but you are going to be happier than you've ever been in your entire life once this thing's all done." And that truly because of the perspective I have through this, every day I wake up, it's a gift. And so I tried to have that perspective every day at Walter Reed, even when it was tough.
And I'd be lying if I said every day was wonderful. It wasn't. There were tons of setbacks, there were tons of health issues that we called it the Walter Reed shuffle, five steps forward today, sometimes 10 steps backward the next day. But you keep going. You be thankful for the day that you have. You try and make the best out of it. And fast-forward to 2024, truly, I've never been happier in my entire life than I am now.

Dr. Peters:
Well, that is so inspiring. And I guess one thread that I was thinking of as you were talking is really, you had your community within the National Guard, and then that community sort of morphed into the community at Walter Reed with all those different service members. And we have our community for our Brain & Life listeners and beyond because they are dealing with maybe similar injuries that you had. You also went to, I guess you really have flourished within the idea of community. You've actually served in the House of Representatives in Minnesota and then also in the veteran community. Can you sort of describe your experience both for the veterans and in the House of Representatives?

John Kriesel:
Sure. So when I got back from Walter Reed and then got through my rehab, so I was at Walter Reed for nine months. I was inpatient for roughly four months, four and a half, and then was an outpatient living on Walter Reed. And I would just wheelchair to physical therapy every day. I'd do two sessions, then I'd go back and then wanted to do something, wanted to... I'm a lot more patient now than I was at age 25, but I think that served me well because I was like, I want to get better now. I want to push the envelope as much as I can. So I was able to get an internship on Capitol Hill working for Senator Norm Coleman, working at the Hart Senate office building. And it was very minor stuff, but I had a place be every day. I had a purpose. Once I was done with physical therapy, I'd shower, I'd put on a suit and I would drive to the US Capitol.
And I couldn't believe how beautiful it was getting to park in that ramp and then going through all this stuff, dealing with constituents. And again, I did very, very little, but it was something to give me purpose every day. Well, then when I got back, I realized the show must go on. And at Walter Reed, it's all about the injured service member. It's all very patient-focused, as it should be. When you get back to Minnesota, and part of the reason I wanted to get back here, I knew the show must go on when my friends got back from their deployment in late July and I got back in August. A lot of them were already back to work or starting college, and they had their lives, they had their families. Same with the situation I was in. And so it wasn't about me anymore. It was a way to then just, okay, the show must go on. I need to get back into life, focus, find a new sense of purpose.
And so that void though, from being at that point, going through a medical retirement was like, okay, this isn't the way I envisioned it. And the military offered for me to be able to stay on active duty, but have a desk job, but I didn't want to take up a staff sergeant slot for someone else that could deserve it and was deployable. So essentially that's what I would've been doing. I would've been taking up someone's spot when I couldn't do fully the work that they could do. And so I decided I'm going to just medically retire and start life. So I went through med board, got out. But there was a void. There was a void. And there's no way to fill the void of military service and what you go through in that and all of that.
So I was like, I want to serve, but in a different capacity. Someone approached me about running for office. I did. I wore out a prosthetic socket, I knocked on thousands of doors. I outdoor knocked my opponent and she has two legs. And so I won by 452 votes, was elected to the Minnesota House and then served one term, decided that was going to be good enough. Wanted to do my part, learn and get the heck out. And then from there I went on to be the director of veteran services for Anoka County. So it's all of those things, just kind of the drive from what I went through, wanting to make the best out of it and say, all right, I'm going to do something totally different. I never would've ran for office had I not been through what I did. I never would've thought of it. So yeah, it's been a heck of a ride.

Dr. Peters:
Well, it's definitely inspiring. You mentioned having a prosthesis. We're a podcast about patients that have neurologic conditions or neurologic illnesses. Can you talk about how you handle with your prostheses and do you use a wheelchair and just elaborate a little more on that?

John Kriesel:
Sure. So yes, so my left leg is an above the knee amputation, right leg below the knee. So on my left leg I have an Ottobock X3 prosthesis that is a computerized, but I have to do the work, which is good. I want to be in control of it. Right leg below the knee is just a very simple, basic prosthesis with a pretty flexible foot. I still golf and do all kinds of stuff like that, but I use a wheelchair at night, so I take my legs off. But I wear my legs probably from about 6:00 A.M. to about nine to 10:00 P.M. every day. So I'm primarily in my prosthetics. I have a roll-in shower. My house is fully wheelchair accessible, but the way we designed it is it doesn't look like it. I don't use any hand controls in my vehicle. I just drive normal.
And really, as far as accommodations, when I travel for speaking engagements, I put my carry-on luggage on my wheelchair, and I push it through the airport and then I leave my wheelchair at the gate. So I'm able to get on the plane alone. I'm very independent and I'm thankful for that. But a lot of that is at Walter Reed, they have a fake apartment that you have to go in and show that you can get in the cupboard and do all this before you can go home on leave. And so all those things, they really train you for that. And being on active duty, that is your job. Whereas I think on the civilian side, we're not as lucky in that regard because everyone, they don't have that ability to just kind of shut everything down and focus entirely on rehab. Out there, you can't because the military is still paying you on active duty. They're giving you everything you possibly could need. There's no insurance company to say, "No, hold on a minute." It is, whatever you need, we'll take care of.

Dr. Peters:
So it's really that occupational therapy that you got after at Walter Reed that really made the difference.

John Kriesel:
Yes.

Dr. Peters:
And that's something I think we need for all of our listeners and for our patients. I would love that for our patients. That would be great.

John Kriesel:
And that's something I pushed for in the legislature, but didn't get any traction because unfortunately politics, that's how it works. But I was pushing to expand prosthetic care that insurance companies are required to provide people, and House leadership was like, we can't do... Insurance companies or this and that, or they're our friend and whatever. And I looked at it and said, you all on the campaign trail said how amazing I was. And "I Wow, look at him. Go look at him go." I couldn't have done that if I hadn't been hurt in a military setting because the military and the VA provide everything I need. And so look at how I've been able to thrive and pay a bunch more taxes than I would had I not been in that... It's a cycle. So yeah, it's all that stuff. It's a weird thing to say, but since I did lose my legs, I'm glad that it was in a military setting because of the opportunities, the prosthesis and the care that I was provided.

Dr. Peters:
So when you transitioned from being in the military to being a veteran, what do you think that now veterans need in comparison to active duty military?

John Kriesel:
I think it's a support system like anyone, and that I isn't just military-specific. I'm fortunate, having been in the National Guard and deployed with a unit from Minnesota, I get to work with my best friend every day. He was in the same bomb blast. He lives within a half hour for me. We go on multiple vacations every year. Our families hang, he's the godfather to my daughter. So I have not only my best friend, but my best friend who's been through the exact same thing I did. So we understand each other, the guys in our unit, we suffered the loss of our friends, we went through hell together. We all have each other if we need it. Having that support system and having goals, I think that's the biggest thing too. And it's something that when people come into my office at work to try and get help getting VA benefits, I make sure to not measure or have them even measure what they're going through with what I have, because it's all relative.
But I want to at least help people understand when it comes. And thankfully there's not a lot of people that have been through what I have that come in here, but in life we have to have goals. You have to have something to look forward to the next day, whether it's a vacation, whether it's seeing your family at the end of the day or whatever it is, having those goals, 'cause otherwise we just exist and hang out there. And it's easy to do that because life is tiring. Life is difficult.
So it's easy to just be like, you know what? I am tired, but I'll get home at the end of the day and I'll be exhausted. Which is good. It means you're living life. But my daughter will be like, "Let's play. Let's do this." And I might be like, "Holy smokes, kiddo. I am beat and you have a lot of energy." But I say, "You know what, okay, sure," because I'm going to miss that someday. And it's something to keep you young and keep you going. And that's just one example. We all have something we can do to create goals or have something to look forward to or have a sense of purpose, but we just have to do that and create that.

Dr. Peters:
I love that philosophy of goals. I often tell my patients quality of life is, and I've said it again on this podcast, it's who you are, who you belong to, but also what you're becoming. And that becoming is really the goal part. So one of the aspects of this podcast is we're going to discuss the phenomenon of phantom limb. And again, this is a condition where someone that's an amputee, has had an amputated limb, whether it's arm or a leg, will still sort of feel their limb there. Could you describe, have you experienced that and-

John Kriesel:
Oh yeah.

Dr. Peters:
So tell us about it and what it is.

John Kriesel:
So I get phantom limb sensation more often than the pain, thankfully.

Dr. Peters:
Okay.

John Kriesel:
So where right now I'm talking about, I can kind of feel my feet.

Dr. Peters:
Wow.

John Kriesel:
The human body is nuts. The human body is nuts. But I can kind of feel where my feet would, or at least I think I feel where my feet would be. And I kind of like that. I can kind of feel like I can wiggle my toes right now. I can do that. But obviously look down and I can see I cannot wiggle my toes 'cause they're fake. But at Walter Reed, I struggled very badly with phantom pain, but more on my above the knee side. And it'd be very sharp and I would describe it as what I would assume if someone took a very sharp scalpel and just sliced along the top of my leg. And it's frustrating because I think it's BS that my legs are gone, but I can still have pain in them. That seems dumb, but it's what happens. My below the knee side, I really don't suffer from the pain ever.
So now I would say probably, I don't know, a handful of times a year, probably 10 to 20 times a year will I have phantom limb pain. Most of the time it's during the day and I can get up, stand up, stretch, walk a little bit, all good. If it's in the middle of the night, that's when it sucks because start to fall asleep again and then boom, you wake up again. And like I said, I don't have any nightmares. I don't have PTSD. I'm very lucky. But that is the one thing. And I would say that probably happens two to three times a year. So not a huge deal, but when it does, it sucks. And that's a long night.

Dr. Peters:
Well, thank you for sharing it. It sounds like you learned from your other colleagues.

John Kriesel:
Yes.

Dr. Peters:
Have you had other experiences with veterans that have had phantom limb and maybe some challenges or maybe some other treatments that they've gone through?

John Kriesel:
I don't think so. I mean, the friends that I know that I've met through the amputee community and they seem to be managing just fine. But everyone, my other buddy who's lost two legs and it's separate, he was Afghanistan, he was not in the unit I was in. He's double above the knee. He seems to be fine phantom pain wise. If he's not, he doesn't talk about it much. I haven't heard him mention it. And I just think too, probably now, and a big part of one of the benefits to, because obviously war is awful and the cost of war is awful, but the medical community grows substantially from the research and from the trauma care and all that stuff. And you've got young, healthy people coming back, otherwise healthy, that can try out new prosthesis, try out new treatment methods and do other stuff. And I feel like probably today, year of our Lord 2024, the understanding of phantom limb pain is much greater than it was in 2006 when I was injured.

Dr. Peters:
I still think it's somewhat of a... We still need to have more of a complete understanding of it, and we're going to have a medical expert in this episode sort of explain phantom limb and the phenomenon to our audience.
Well, you have been so inspiring. I say you're surviving, you're thriving and standing. So I'm just thrilled to have talked to you today. And I just want to thank you so much for joining us today on this podcast and sharing your expertise. And I just want to remind our listeners of your book, Still Standing, they can check it out, right, it's on Amazon?

John Kriesel:
It's on Amazon and Johnkriesel.com if they're looking for a motivational speaker for an upcoming event anywhere in the United States. But Johnkreisel.com, I'm on Twitter, Instagram, but the book is widely available on Amazon. So yeah.

Dr. Peters:
John, this was so great. Thank you again for your service. Thank you for all that you're doing still. Have a lovely day.

John Kriesel:
Thanks, you too. Thanks for having me on.

Dr. Correa:
Can't get enough of the Brain & Life Podcast? Keep the conversation going on social media when you follow @neurodrcorrea and @brainandlifemag, or visit Brainandlife.org.

Dr. Peters:
Hello listeners, thank you for joining us today on our podcast. I'm your podcast co-host, Dr. Katy Peters. And today our expert is Dr. Tamar Makin. Dr. Makin is a professor of cognitive neuroscience at Cambridge University. She's received several career development fellowships to establish her research. And her research is a phenomenon called Brain Plasticity, and we'll learn more about that today. She is also going to be discussing her work about phantom limb pain, and she did an article on this called Phantom Limb Pain, Thinking Outside the "Mirror Box". And she's here with us today to discuss this phenomenon in her research. Welcome to the Brain & Life Podcast, doctor.

Tamar Makin:
Thank you for having me.

Dr. Peters:
Absolutely. So can you tell us a little more about yourself and where you're joining us from?

Tamar Makin:
Sure. So as you said, I'm a neuroscientist and I'm interested in the brain and the body and how changing one of them would impact changes in the other. I am currently here in my lab in Cambridge University where we're having a rainy day.

Dr. Peters:
Oh, well it's really hot here. So we would love some rain. Thank you for joining us across the pond. And I can't wait to learn more about your research. And I actually visited your website, plasticity-lab.com, and for our listeners, can you just tell us more about the, I guess the concept of plasticity as it pertains to our brain and its function?

Tamar Makin:
Sure. So people use plasticity as an umbrella term to mean something changed and this something could really be anything from a change in the infrastructure, the underlying structure of the brain is, or it could be the way the brain functions. And the way I got interested in this concept of changes in the brain is that there seems to be this really special striking form of brain plasticity that is so special they've actually given it a special name, they call it brain reorganization.
And the name tells you everything. It's this idea that the brain can change its underlying function and or change the way it is structured in order to support new functions throughout life. And maybe one of the most famous examples for this so-called reorganization, is following amputation. So you have huge parts of the brain that are responsible for your hand, really fantastic neural real estate. And if you lose your hand and arm to an amputation, for example, this brain area becomes redundant all of a sudden because there's no hand to operate. So there's this notion that if you don't need that brain area to control the hand anymore, maybe it can change its function and the way it is wired in order to support a new function, for example, maybe to better support your other body parts that are remaining. And this is the process of reorganization, which I've been dedicating my research to.

Dr. Peters:
That is really fascinating. And you mentioned sort of limb pain, and we actually interviewed a patient that had that, John Kriesel, who developed that after losing his legs. Can you just give us a little bit more about that phenomenon of phantom limb pain and what happens to the patient? What do they experience?

Tamar Makin:
So first of all, I'm really, really sorry to hear about John. Unfortunately, he's not alone. So the vast majority of people that experience an amputation would also experience phantom limb pain. And the easiest way to describe it is think about pain that you experience that is coming from your hand, only your hand is no longer there. It feels authentically very similar to the way you would experience burning your hand on the grill or having a cramp in your muscles or just feeling pins and needles like you sat on your hand. It's the same set of experiences, burning hot, freezing cold, tingling, shooting, the same range of pain that you could experience in your daily life when you are injuring your hand and your tissue. But all of this is happening after the hand is physically no longer there.

Dr. Peters:
It has to be really hard because the people that it's traumatic to lose a limb. And we see also post-traumatic stress disorder in patients, particularly if they're combat veterans. But I would also think for any patient that has an amputation or that sort of lost a part of their body would have sort of those stressors. Is there anything particular in the brain that also helps or changes with that reorganization or that plasticity that is involved with the stress response?

Tamar Makin:
So here's the thing, the hand is physically missing, but the part of the brain that controls the hand, that's still there, right?

Dr. Peters:
Oh wow. Yeah, of course.

Tamar Makin:
And for me, this is the starting point of this research, and I'll come back to that. But what I wanted to say about PTSD and so on, losing a body part to amputation, especially if it's a leg or hand, [inaudible 00:33:20] so functional in our daily life, we rely on it so much is so devastating. Now add on this social stigma that thankfully is maybe slightly decreasing in recent in years, but still an unpleasant thing to get through. And all the daily adjustments, 90% of people with amputation, with an arm amputation would need to change a job, for example. So massive, massive life changes. And what strikes me the most is in the midst of all these really difficult processes, to many of the patients that I meet, the phantom pain is really the crux of it. They are brave people, they're happy to face the disability head on and make the adjustments and work at it and learn how to use a prosthesis and all these other really difficult things that are going to get in their way to their new routine. But the one thing that really gets them is phantom pain.

Dr. Peters:
So another thing is, is there other symptoms that come along with that phantom pain? Will they, instead of just pain, do they also feel tingling or other types of sensations associated with it?

Tamar Makin:
So phantom pain is kind of a subclass of phantom sensations.

Dr. Peters:
Okay.

Tamar Makin:
Phantom sensations is just feeling some sensations from the hand as if it is there. And it could be anything from, I can feel my fingers moving when I want them to move or I actually feel them really clenched and unable to move them even though I'm trying to feel like I'm moving them or any way to these kind of tactile sensations like pins and needles, just sensation of touch and so on. And pain is kind of subclass in there. And what is very common is that these two things come together hand to hand, if you will. So we see strong correlations between people's experience or of experience of experiencing phantom sensations and how much they suffer from phantom pain. But that's not the only thing that comes with phantom pain. We also see that people with phantom pain tend to have, are more likely to have, so it's a correlation, but they tend to suffer more from stump pain or residual arm pain. So that will be the part of the body that has been amputated but is still flesh and blood, is still there attached to you.

Dr. Peters:
That's really interesting. Now you have this article that I checked out and you referenced thinking outside the mirror box. Can you sort of elaborate on that point about the mirror?

Tamar Makin:
So as I said, amputation has been always associated with this really wonderful, maybe not so wonderful, we'll get to that in a second, phenomena that is termed reorganization. This idea that part of the brain can change their affiliation in order to do something new. And as I said, the hand territory, particularly in the parts of the brain that are responsible of processing information in and out of the brain to control the hand and risk the sensory information from the hand, these areas are thought to change their affiliation and become related to other body parts. And the face has been always the primary culprit in this. Now the idea is that this dramatic change that happens pretty much maybe in a very short timeframe is maybe bad for you. And the idea is that maybe by having now inputs from the face going into the part of the brain that was originally responsible of the hand is what we call maladaptive.
The brain doesn't know what to do with these inputs because they don't really fit with everything else that this brain area has learned. And the idea that has been developing that has been really inspiring treatment is that from this maladaptive process, you have this signal into the brain. The brain doesn't know what to do with it, doesn't know how to interpret it, so it interprets it as pain. And because all of this is happening in the cortical territory of the hand for the person, the experience is pain coming from the missing hand. This process or this theory is called the maladaptive theory of phantom in pain.
Then came a very famous clinician who was thinking, how can we reverse this maladaptive process? So what we want to do is get the aberrant signals that are coming from the face outside of the hand area. So what we want to do maybe is restore the representation of the hand even though it's missing. And he came up with this treatment that is called mirror box treatment. And in this treatment what we do is we place a mirror, just a simple mirror like a bedroom mirror in front of your good hand, let's say, and covering your stump. And we would ask you to set it that the projection of your good hand falls just around where your hand should have been. And then we would ask you to move your intact hand to create this illusory experience as if your hand is restored and right there. And this is the mirror box treatment. And this has become very, very popularized both in pop culture but also in pain clinics.
I have many, many problems with this idea, with this theory, but the biggest problem I have is that this treatment does not work. People love it, they love presenting it. It's very cheap, it's very accessible. There's a beautiful story behind it about the neuroscience explaining and guiding the treatment. But if you would sit a person down and tell them, "This is neuroscience in the clinic, this is going to make you feel better, just give it a go. Try it." They tend to say it makes them feel better, but placebo effects also make people feel better.
But the problem with placebo effects, and this maybe some of it is a complaints effect, so trying to please the clinician that is giving you this fancy treatment, the problem with these types of treatments is that they're not long-lasting. And a bigger problem I have with these treatments is if we know they're not working, then we are not doing our job by not pushing aside these pseudo treatments in order to come up with treatments that are genuinely applicable and useful. And because mirror box treatment is so common, there's very, very few efforts to come up with alternative treatments that would actually be effective.

Dr. Peters:
So what are your next steps to come up with really a true treatment?

Tamar Makin:
First thing is first, we need to really wipe clean the textbooks from this really well-known theory about reorganization. So in my research I've been trying to get to the same questions from a different perspective, and I told you, all begins with the fact that the part of the brain that is responsible for the hand is still there. And I told you that people experience phantom sensations, they can still feel the hand even though it's physically missing. And if you ask them, can you try and move your fingers? They provide very detailed, very consistent descriptions. One person would say, "Yes, I can feel each and every one of my fingers, no problem." Another person would say, "I can still move my thumb, but my other fingers are kind of frozen and I don't really feel my pinky anymore." So with that in mind, what I've been doing is trying to ask what happens in the brain when we ask people to move their phantom fingers?
And what I've shown with this relatively simple paradigm, all you need is an amputee that can feel their hand, which is most amputees, and a really powerful MRI scanner, which we happen to have in plenty. And you can scan the brain and see what happens when you're telling them, now move this finger. Now move that finger. Obviously if you're sitting there looking at the participant, nothing is happening, the hand is not there. But when you look in the brain, you can see these very, very detailed maps of the hand lighting up just in the right order, just in the right shape, just in the right position. And we've even done a study that we've just finished now where we've scanned people before and after they undergo the amputation. So these are people with planned amputations, and we can compare the representation of the phantom hand after the amputation and we can match that with exquisite detail to the exact same representation of the hand that was there before.
So nothing changes in the brain. We don't see any evidence for the brain letting go of that detail image of the hand. It is there to stay and we don't see any evidence for reorganization when we compare likes with like. So when we can compare, for example, the representation of the face before and after the amputation.
So the first thing we need to do is set the record straight. Reorganization is a really fancy term. It's a really nice story, but it is a story. It is not based on solid scientific facts. Scientific facts tell us that the representation of the hand is maintained, meaning your sensory pathway, your motor pathways are functioning pretty much business as usual. And this gives you a new opportunity to consider treatment. And I haven't developed a treatment myself, but one of the more promising and more thriving treatments that I've been seeing in recent years is based on the idea that the input of the pain is not created in the brain, but it is coming from the nerve that has been injured through the amputation, which makes so much sense.
So normally how do we get experience of pain? If I stab your finger or if you cut it with a knife or burn it and so on, we are going to trigger receptors at the tip, let's say, of your finger. And these receptors are going to signal to nerves that will travel through your arm all the way to your spinal cord. And from then they will continue on with the journey to the brain. And the brain would process this input, the brain would decide, oh, this is the pain signal and would give you the experience.
Now if we're cutting the arm, sure your fingertips and the receptors are not there, but the nerves are still there. And if the nerves are not happy, if they're not growing nicely into tissue that would normalize them, they're going to start and generate their own junk activity. So imagine all these nerves feeding all this information to your spinal cord going, "Me, me, I'm here. Listen to me." When these nerves normally provide signals, pain, alert, danger, retract, avoid, then it makes sense that you're experiencing this pain. And what the treatments, then there's a couple of them and there are surgical procedures mainly, what they do is they open you up, they grab the nerve, they cut it clean, and they give it a new home. And it's a bit complicated to give it a new home.
Turns out that we need to de-nervate the actual muscle in order for the muscle to accept and reroute the nerve to grow in. So it requires some spectacular surgical skills, meaning it's a complicated surgery and it requires expertise and it takes a bit of time, but it seems to be giving, and I'm being cautious because we haven't seen conclusive evidence yet, but the evidence so far look very promising. And the reason I like this procedure is that it makes sense mechanistically. We don't need to talk about this magic box of neurological trickery that can rewire their brain, which honestly sounds ridiculous. I don't know why anyone bought into this to begin with. We can just talk about physiology.

Dr. Peters:
Well, I think you're essentially allowing your science to bring better therapies to those patients with phantom limb pain, and it isn't until we do those great experiments that you've done and educated, not just the patients, but also the providers of what's really happening at a neuroscientific level. So I just want to say thank you. This was such a fun discussion and enlightening for me. Thank you for sharing your expertise on phantom limb pain and all your fascinating research. And of course, always I want to thank our listeners. Have a great day.

Tamar Makin:
Thank you.

Dr. Correa:
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