What is Phantom Limb Pain, Phil Wolfson’s Ketamine Free National Clinical Trial

Introduction to the podcast and guest 0:00

I think at some point the person awoke to the fact they didn't have a finger or someone wakes up, that they're missing an arm, and then they are really struggling with one. They may not remember the acute trauma, the explosion, or the car accident, but they going to eventually cope with, oh, I'm missing a limb. And that's not going to be easy. So I think what ketamine does is it anesthetizes and puts a distance between the event and the awakening. That distance is made up by us as practitioners.

How long do we keep someone in that state before we bring them back and they have to deal with the pain? loss of limb or whatever, which is going to be difficult eventually. So it's the memory of the trauma itself which tends to lost and suppressed. Welcome to the To Curious MD podcast. I'm Dr. Ali Ahmed. And I am Dr Surya Rapan. With the wisdom from holistic, alternative and these conventional medicines, we are here to challenge the status quo. We're curious about the connectivity and complexity between diverse fields of knowledge as a relief to consciousness, chronic illness, mental health, resilience and beyond.

learning more about the art and science of healing, or listening to stories of extraordinary healing. You're in the right place. Let's dive in. Welcome to the Too Curious MD podcast where medicine is more than science, it's story, art, and connection and integration. This is a space for the curious and like to dive in. Today, we are honored to be joined by Dr. Phil Wilson, a returning guest who is pioneering psychiatrist, psychotherapist as well, and one of the leading voices in the therapeutic use of ketamine.

He's also the founder of Ketamine Research Foundation, an organization at the forefront of really advancing education, clinical practice, and research in ketamine-assisted therapy. Dr. Wilson has been instrumental in shaping the modern understanding of ketamin as more than just a pharmacological agent. And if you've read the ketamine papers, you would know that he has really acknowledged and really brought light to ketamines as a catalyst for healing, insight and transformation. His work spans decades and includes contributions to clinical protocols, training programs, and a growing body of ketamin research and publication.

Today, we're going to explore an exciting and deeply meaningful new frontier of his work in a clinical trial investigating ketamine for phantom limb. And I would like to make an announcement that we at Shaw Minds Healing Center are a Clinical Site for this very important study. And I really wanted to bring light to this topic because it is a topic not really acknowledged, I think, as a treatment or even as an option for treatment

Phantom limb pain and the ketamine study 3:01

when somebody has a limb or amputation and has pain subsequent to that. And this is the condition that really intersects neurology, trauma, and even the self-consciousness itself. So I believe Anton Lim raises really curious questions and how does the brain construct reality of that new missing entity? What does a pain feel like when the physically part is not present? These are some of the questions that we have. I'd like to dive in and welcome again Dr. Phil Wilson to this podcast today. It's my pleasure.

What a lovely introduction. Thank you. And indeed, you're a part of the whole phantom limb protocol project that we've put together through FDA approval and IRB approval, a formal study of new protocol to see that we can demonstrate the effects of ketamine in this approach to help people with what's a really complex syndrome. It's not just pain, it's the sense of location that can be torturous, where a twit limb that used to exist is twisted or in an uncomfortable position even though it doesn't exist.

It has many other kinds of phenomena, sensory phenomena. Shooting pains, itches, all kinds things that relate to the brain's preposition that the limb still exists. A lot of people think it's the whole limb that is projected. But in fact, mostly it is parts of the limb. So if someone, for example, has an amputation below the knee, it isn't the leg to the foot that's projected, usually it can be, but it often parts. The pain can extraordinary, constant. It can go on for years. And it could be somewhat intermittent.

then return. People may have a remission and then have relapse. And there are, you know, millions of people who are amputees, and amputations even extend to phantom limb breast mastectomy pain and problems of that sort. There are thoughts about other kinds of phantom reconstructions that the brain accomplishes when parts are missing. So it's a pretty wide spectrum. We're focused on amputation. And I have a story to tell. Would you like me to? Yes, I would love to hear about what brought you to this important topic.

So I'm an old investigator within the MDMA MAPS ambiance. I got involved in the legal period with the revolution that MDma created in psychotherapy in early 1980s. And MAPS is a wonderful organization, very large, representing the interest in making MDMA legal again, at least for prescription, which is where most of the energy is gone. Still not happened, unfortunately. So anyway, MAPS has held what is now a biannual conference where thousands of people come and present and talk about the world of psychedelics, MDMA, ketamine, etc., and where I've been a presenter.

And two MAPPS conferences ago in Denver, I was manning the Ketamine Research Foundation booth, which is our nonprofit, sponsoring this protocol. And a woman came up to me who had a missing below-the-knee leg from an amputation. I told her story eventually in Lucid News, and she's a remarkable woman. Her name is Michelle Barocchi. She's of Italian background, lives in the States, has a PhD in molecular biology, had a horrendous accident which almost cost her life in Sicily. So she came up to me and said to be, oh, I want to tell you about tetamine and my phantom limb experience.

And then she told me the story a bit, and I was fascinated.

Michelleu2019s accident and ketamine relief 7:31

I meant to keep in touch with it. We lost touch for a while, then we got back. And I'll tell a story because, you know, it's typical of the horrors that occur in so many ways, from accidents, war, overdoses, all kinds of things that take people's limbs off. Diabetes. diabetes in older people especially, one of the main causes of loss of limb. So Michelle had been on the back of a Vespa with her boyfriend in Italy, in Sicily in fact, and they were on a very back road, no communication, no phones working, and a little car turned to bend and the Vespa crashed into the car.

Her boyfriend was unharmed, he was sitting in front, but the... car took off her leg, pinning it in the call. And so she's exsanguinating, she bleeding out, side of the road, they can't get help. and they had no choice. So her man and the driver of the car, which was badly damaged, drove to get help. She's lying there with a tourniquet trying to restrict her loss of blood and then they get to help and she's helicoptered out. It goes through a whole series of attempts to help her, but she had an amputation.

There was no ability to avoid that. And then she's left with furious pain for years and years. Michelle is a very thoughtful person. She was on opiates that didn't work and gave some partial relief. When she began to explore the world of alternative medicine, and she started doing ayahuasca in Latin America. And that was great for emotional issues, which were enormous. People whose limbs really often have tremendous emotional issue, PTSD, symptoms of involuntary recollection of the accident. but also just depression, losing a leg and coping with stump issues.

People think it all heals easily, it doesn't. Stump issues are a tremendous problem for people with just an infection and pain and irritation. The stump is not a natural organ, so it has all kinds of its own healing issues, So the ayahuasca was good, fair, but didn't do anything. And then her boyfriend said, well, I've heard that ketamine might be useful. She did what people do on the street and she insulated, put in her nose, ketamine. And lo and behold, the pain went away. Completely went and she was having an enormous daily pain.

And it went for six or eight months, I forget which, and then it returned a bit. She repeated that, then she's been pain free since. So kind of a miracle. So I heard this and I explored this, told their story, and said, oh, well, we need to do the political. After the story was written, one of our co-leaders in the Albuquerque side, Lisa Feynman, who deserves a great deal of credit, had an amputee. And she decided to try ketamine. We didn't have a protocol then. She'd been in one of our training programs.

And lo and behold, this woman was having relief of her daily phantom limb pain for weeks at a time. So she hasn't got full remission, but she's gotten much more of her life back. And that inspired me to create a protocol, which is involved with intramuscular use of ketamine over time. In a serious look, see how ketamines may or may not affect, we're looking at 25 to 30 amputees of a various sort. to come into the program, have this ketamine experience under very direct supervision. It's free, as you know, and we're very optimistic to get going and see what this really can do.

Yeah, and I think it's really important for people in our audience and in the audience in a larger context to really hear about these stories, particularly because they're traumatic.

How phantom limb pain works in the brain 12:04

And just from what you've just shared, I have a question around her experience as well as the experience of probably thousands of people who've had an amputation, whether that was a result of an accident like this or due to infection or necrosis or whatever the indications may be. What does phantom limb pain reveal to us about how the brain represents pain in the body? It's fascinating because you have a limb, it's been now amputated. You would imagine as a physician that the pain should go, but why does it not go?

What would you say happens in the brain? I think the brains a wild thing. and extremely complex. And we don't have full answers to the wonderful question you've raised. But what we can imagine and think about is that the brain is projecting the loss of the limb. It's projecting And it's projecting it to the area that has suffered. So it still locked in to its reaction to The Loss of the Limb. It's locked into this is still happening and you're in trouble and it is giving the warning sign out of control.

Right. Okay. So it's an out of control response. It's telling the person who has the reputation that their leg is in the wrong position. Something's terrible is the matter. And it can't stop telling a person that. it stuck. Stuck. so it cant get present. So what I think pedamine does is it, when it works, and we're not clear about how many people will be positively affected, that's our study. When it work, it tells the brain, no, you're making a mistake. This is not occurring anymore. It occurred.

There's enough issues with the amputation issue of the stump and all the stuff. Let's pay attention to what's local and real and get over, you know, projecting the horror that has occurred." So the brain is really a PTSD organ in that sense. and that it's perpetuating the traumatic issue on and on. That's a psychological view. Do I have a neurological explanation? I think we're working towards it, but I don't think so. And I thinks it relates really to neural nodes and the complexity of projections of form, not just of pain.

So, you know, there's form involved. There's the sense of, I had a leg, now I don't have a leg or had a hand, now i don' have her hand and it's projecting the form as if it existed. As an indicator of acute loss or break or even that traumatic experience we lived over and over again in the body and the bodies recalling it. The body's keeping the score. But it's keeping the score at much too high a score, and the body needs to adapt. Not everyone gets phantom limb pain. But in terms of numbers, two to three million people in this country have our amputees.

A lot of vets coming back for more amputeses, we want to reach them. What we're doing is a demonstration that we think will affect lots of people. We have to see how it works for elderly people with, as you pointed out, diabetes, which is an enormous cause of amputation. But it also has so many vascular factors that I don't know that, we know yet. what it will do. And I would just add that ketamine's a very interesting medicine in terms of pain. It's very unpredictable. As we're learning, it works on a variety of things like complex regional pain syndrome, that's been poorly explored.

it Works on status epilepticus, though it's works status migraine, Though it can cause migraines, It works fibromyalgia for some people. You know, it's empirical in the sense that it is not a one-to-one linear thing. It's a matter of, okay, we'll try this. We'll see how it goes. And let's see if we can get you a result. Then also, because we don't have standards yet, We don't know what the dosages are that will do this, and they're pretty much across the board. There are various pain programs of different duration and dosage.

You know, in some pain program, it's called four days with intravenous going, with ketamine going to people for over four day intermittently or even longer term. So I think part of what we want to do, what you're going to, do is to help us come up with some sense of this is a relative standard that we can provide

Ketamineu2019s role in trauma and dissociation 17:28

to people all across the world. The pedamine is our legal substance. It's a World Health Organization approved substance and has no respiratory suppression at these dosages, which are called sub anesthetic. It is really totally safe. It's one of the safest medicines around. That's why it's widely used for anesthesia, because it doesn't suppress breath. And so it is a very safe approach and I hope we will learn how to really help people with this very great difficulty. Yeah, there'll be many questions hopefully answered.

One is kind of the protocols, you know, the standard, what is the best approach in this process of management of a pain patient who has this experience. The other factor that I feel very curious about, well, with the question of this patient that you described, be on opioids and not having a response to something partial. What is it you feel about ketamine in particular that may affect that NMDA receptor modulation, the neuroplasticity, or do you This has to be more complex with that sense of perception and consciousness related to pain.

It's a complex topic and I probably opened up so many more questions around that. But I'm just very curious of why ketamine and its receptor approach to paint, how does it make it unique when it comes to other pain medications in their response and that neuroplasticity effect? I mean, I think that's a very good question. The mechanism is different. So, opiates work at a different level. Ketamine may have an opioidurgic effect, it's called, downstream, but it is not primary. It's not working on mu receptors and what opioids do.

It's working on a different level. It is working both physically in the neurological sense, and it's also working in a psychological sense. Both come together. I don't think we have a clear answer on the mechanism of pain reduction. But remember, we're not talking about pain-reduction in general. We're talking the anesthetic effect of ketamine. which is part and parcel of the whole thing, but not causative of a relief of pain. Now, if you put someone to sleep in an anesthetic dosage, they're not going to feel pain, and that's often done in battlefield situations, where if he gave someone opiates, reduction of pain, but they're going to be conscious living through the trauma, the rest.

You give ketamine in that kind of acute accident situation, a military situation. People are anesthetized and they will be awakened at various points. So the mechanism of action seems to me both psychological and at neural net level, and it's not at a pain level per se. It's somewhat different. Right. I had a patient who came in for ketamine treatment, but not really because of phantom limb, that did have a missing digit from an accident injury. And the reason why that patient came into ketamine is because for treatment for depression, because when they cut their finger and amputated their fingers, they were given ketamin in the ambulance.

and they did not even care about losing that digit. Because they had received ketamine, they didn't even feel the trauma of that experience at the time. They felt, well, yeah, this happened to me, no problem, I'm alive. So ketamine worked for that patient, particularly for the traumatic event in that timing. I've seen this with ketamin in the emergency room as a hospitalist where ketimine is given in situations and the side effect of it is, hey, that patients is calm. when something really, when it could be the opposite in that acute situation.

So I'm very curious about, well, what is it about ketamine in general that gives this sense of disconnection, that dissociative effect to that experience? I think at some point the person awoke to the fact they didn't have a finger or someone wakes up, that they're missing an arm, and then they are really struggling with one. They may not remember the acute trauma, the explosion, or the car accident, but they going to eventually cope with, oh, I'm missing a limb. And that's not going be easy. So I think what ketamine does is it anesthetizes and puts a distance between the event and the awakening.

That distance is made up by us as practitioners. How long do we keep someone in that state before we bring them back and they have to deal with the pain? loss of limb or whatever, which is going to be difficult eventually. So it's the memory of the trauma itself which tends to lost and suppressed. But I mean you're raising very good questions. Somehow I think it is, you know, at the level of perception of pain that kind of works. I don't think its at peripheral nerve level, the local nerve, its brain.

It's all brain. I think it's central brain and it was changing the whole nature of the experience of pain rather than the location of being per se.

Trial eligibility and participation details 23:08

Yeah. Kind of Ketamine interrupting the pain signals, but also helping the brain remap itself, that sense of reality it has with that pain, would you say? something like that. So I think as we work with people, we're going to learn more about, because this is really our interest. I mean, our interests is not just can we figure out how Ketamine works, but if we can figure how to help people in the program with KETAMINE and, you know, let's make sure we tell people how they find us. people who want to join our protocol.

We have five locations and people have to be within 50 miles of a radius of those locations. One is where you are in Sacramento, Alia. I'm in the Bay Area. Another is in Albuquerque. another is Los Angeles. And another, is opening up in Milwaukee area. So people can't participate unless they're able to get to us, hence the requirement for a 50-mile radius, assuming people could drive to be with us. To get our protocol, either contact us through the Ketamine Research Foundation, or you were registered and now receiving patients at clinicaltrials.gov, which is the government registration for new clinical trials where anyone in the public can go and look, phantom limb pain, oh, they're doing this, I can get in touch with them.

Walk us a little bit for patients who might be curious, what would this entail for them in terms of being registered? What's the expectation for then, how many sessions? They have to be 1865. They had to have a medical doctor in the background, because we're not doing medicine directly. We're doing the protocol. The have agree not to drink or use alcohol or marijuana. for 24 hours. There are various ways in which we isolate the use of ketamine in the protocol so that it's not affected by other substance use.

They can be on opiates, so there's no requirement. But there is a dose limit on opioids. So we expect that people are going to come to us who are in pain and in difficulty. and we're not trying to get them all for our meds. We're trying see the effect of ketamine, which happily is not affected by many med's, so people can be on it. And we can't take people who have significant cardiovascular histories or are acutely hypertensive. But we could take the bulk of people with amputations, and they will have to agree through our informed consent to participate on a regular basis, they can withdraw from the study at any time, but they're going to have a complex intake so that we understand background, and then they are going have to be available to receive the tetamine twice at least so we can see what the effect is, then on an ongoing basis.

The ketamine requirement for a sense of success is that someone has a remission for at least seven days. So if someone gets relief from ketamines or is sure but significant or has full relief for seven or more days, that's a success. When they have recurrence, Some people may never have recurrence, but those who have a recurrent after seven days will come back for further treatment. The length of the whole program is six months. Anything else you would add? I think just having a place for patients to really access and you mentioned ketamineresearchfoundation.org.

they can contact and learn more about how to become a patient or how they see if they qualify. The clinicaltrials.gov, I imagine, has a searchable way of looking for ketamine trials that are available and then provide that accurate information based on patient location. And if want to contact you directly at your site to give them that info. Yes, they can contact us at info at charmindshmynds.com. And I'm Dr. Ali Ahmed and this is Dr Phil Wilson. Again, email us, contact on our website, www.charminds.org.

So I would just leave us with a sense of people with the sense Of optimism. I think this is really going to be beneficial I have enough information to suggest that it's really worth people struggling with phantom limb syndrome to come and be part of this because I Think there's a very good chance that their lives will be measurably and I hope immeasurability improved. So do contact us to be a subject in our program. Yeah and I imagine that this just opens the door to all the implications of pain that you mentioned.

Chronic pain syndromes, fibromyalgia, emotional pain, that's stored in the body as well and how we really are treating more than just as you said the pain whatever the and really bringing the intersection of trauma, the memory of pain, of physical pain to the work that we're doing with patients in ketamine treatment.

Closing reflections on pain, healing, and curiosity 28:38

So I really believe that this is one way of really demonstrating the importance of addressing these topics, again, as a physician and knowing that, you know, when we've had patients who have had diabetes and had amputation, It's something that you would think, and I've seen this in my own practice, that NIMH is, you know, removed and the expectation is they should heal. And that is not necessarily the case. So many patients are left with these unanswered approaches and unanswered treatments that aren't really discussed in our conventional spaces.

I really think this is also an opportunity for people like us, the physicians out there, to really learn about phantom limb and to have our patients even teach us about what their experience in pain is. And that's what I feel I learn every single day from patients is their experiences of what it feels like to be depressed and really exploring that in very open and creative ways. I think that phantoms limb is another way to address that. So thank you for doing this, and I think it's important to the work in so many ways.

I'm so glad that you're doing and excited to be part of this project with you. – I am excited with being with in this graduate and thank for having me on this. And blessings to everyone who's listening and we hope you'll join us if you know someone and send us subjects. We look forward to doing the protocol and reporting it. And there's no cost to the patient. No cost. So this is fully funded. And again, thank you for doing this. I really hope that we get a lot more out of this, too, in the exploration of ketamine in preventive lane.

So this is the Too Curious, Empty podcast where we continue to explore the edges of medicine story. And I think story we cannot ignore. In our chaotic world that we're living in, the AI-generative medicine now, we have to keep the humanistic element of healing in medicine alive and well, and that's what heals. So stay curious and keep asking questions, pushing the envelope and testing the borders of what are, you know, of science. So thank you. Thanks for joining us on the To Curious MD podcast.

We hope today's episode inspired you to ask new questions and explore fresh perspectives. We challenge you to ask us those unasked questions that you're curious about in your medical practice, condition, health and wellness. If you enjoyed the podcast, don't forget to subscribe, share it with somebody just as curious and leave us a review. It helps us keep the curiosity alive. Post or comment with a question or curious inquiry that have and seek to explore or learn with us. Stay curious, and we'll see you next time.