World Stroke Day 2022. A great interview to share with your loved ones so we can help others get ahead of stroke and have better recovery outcomes.
08:38 Stroke Affects Our Thinking Ability
15:02 You Can Keep Getting Better
21:49 Seek Out Specialists
27:48 Dr. J Mocco’s Challenge
35:20 A Numbers Game
46:09 The Get Ahead of Stroke Campaign
52:26 Making Lives Better
Dr. J Mocco 0:00
And, but I want to highlight a positive thing that you just touched on that I think is worth broadcasting, which is people would say that after two years they tied their shoelaces, after three years they walked a few miles. So that’s important. With stroke, one of the amazing things is you can keep getting better, even two years and three years later.
This is the recovery after stroke podcast, with Bill Gasiamis, helping you navigate recovery after stroke.
Bill Gasiamis 0:39
Hello, and welcome to episode 222 of the recovery after stroke podcast. To learn more about my guests including links to their social media and other pages and to download a full transcript of the entire interview. Please go to recoveryafterstroke.com/episodes.
Bill Gasiamis 0:55
If you would like to support this podcast, the best way to do it is to leave the show a five-star review and a few words about what the show means to you on iTunes, and Spotify. And if you’re watching on YouTube, comment below the video, like this episode and to get future notifications of new episodes as they become available, hit the notifications bell.
Bill Gasiamis 1:16
Now sharing the show with family and friends on social media will make it possible for people who may need this type of content to find it easier. And that may make a difference to somebody that is on the road to recovery after their own experience with stroke.
Introduction – Dr. J Mocco
Bill Gasiamis 1:30
Now as part of World Stroke Day on October 29. My guest today is special guest Dr. J Mocco MD a Cerebro Vascular and Endovascular neurosurgeon with clinical interest in stroke, brain aneurysms, subarachnoid hemorrhage, arteriovenous malformations, cavernous malformations, carotid artery stenosis, intracranial stenosis, and brain tumors.
Bill Gasiamis 1:53
Dr. Mocco has published more than 525 peer-reviewed publications, edited three textbooks on neurosurgical techniques, and runs numerous national and international clinical trials to improve the treatment of patients with cerebral vascular disease.
Bill Gasiamis 2:10
Dr. Mocco’s research interests focus on translational efforts to treat ischemic and hemorrhagic stroke. Now this is the kind of person that I’m eternally grateful for the person who decides that they’re going to do all that study put all that time and effort into helping people with conditions like mine.
Bill Gasiamis 2:28
Which ended up in me having three hemorrhages, then brain surgery and all of the recovery that came after that, that’s still going nearly 10 years beyond the first incident. So I hope you enjoy this episode. Now it’s on with the show. Dr. J Mocco, welcome to the podcast.
Dr. J Mocco 2:45
Thank you very much, very glad to be here.
Bill Gasiamis 2:47
I hope you like people saying fantastic things about you. Because from what I’ve read in your bio, you’re the kind of person who I get really excited to meet, and I’m really thankful that you guys exist, you’re gonna have to tell me a little bit about yourself, because I want to know, how is it possible that somebody wakes up one day and decides they’re going to spend their life they’re going to dedicate their entire life to helping people they haven’t even met yet.
Bill Gasiamis 3:17
And I’m one of those people because somebody did that for me, when I experienced a brain hemorrhage as a result of an AVM when I was only 37. And I didn’t even know that I needed people like you. How did you get to that point where you started down this path and became a neurosurgeon?
Dr. J Mocco 3:39
It depends on how many hours we have to discuss. But, I don’t think it’s the kind of thing that happens in one sort of, you know, cataclysmic moment on the road where light shines in front of you, it’s more of life leading you.
Dr. J Mocco 3:58
I had unfortunate circumstances, experience, you know, some tragedies and some challenges in my early life with family members and that was very inspiring and having to be good at science and math and those sorts of things. And so that sort of made sense. But I’ll tell you, when I went to med school, I didn’t have any idea what I didn’t know the difference between a pediatrician and a psychologist and a surgeon.
Dr. J Mocco 4:23
But as you start doing it, you start to realize the kind of life you want the kind of care you want to provide. So even though I didn’t know that I wanted to treat stroke. As I started going through medical school, I knew what I did want to do was to help people that were in distress where if I was good at doing what I could do, and I could commit my time to make a larger difference.
Dr. J Mocco 4:49
It would be a life and death event and really make a dramatic impact. And there isn’t a lot of medicine that’s specifically that acute in that way. And so I was drawn to the field, it wasn’t so much that I chose it, but that it fit what I was looking for in terms of making a difference in the world.
Dr. J Mocco 5:11
And I think I think all physicians get into their career to find that way that they feel their best. So I hope all physicians to find a place where their personality and their skill set can make the greatest difference. For me, this just happened to be the place where I could do it. And it happens to be a place where time matters, and were getting people to the right expertise matters.
Dr. J Mocco 5:38
And so you can be focused on becoming a good surgeon, that was a big part of my career. But then the next part is focusing on not just how good are you at doing something? But how do you help the larger community? How do we work on getting patients to the right place every time, as you may know, from your experience, getting in the right hands quickly, can be absolutely crucial.
Bill Gasiamis 6:08
Yeah, that’s definitely the most important thing as far as the layperson is concerned, because we don’t know that we need to know these things until it happens to us. And then we become guided by our instincts, which aren’t sometimes telling us that we need to be taking action, because what we’re doing is, then we’re letting our head getting in the way our thinking get in the way, which says, this can’t be happening to me, or I’m too young, or I don’t need to take any action about this.
Bill Gasiamis 6:47
And I’m one of those people, I ignored the symptoms of a brain hemorrhage for seven days before I did anything about it. And many people told me to go and get help and see somebody. And I ignored it, because I didn’t know any better. And I’m glad that once the wheels were in motion, and I was in the right place, which was a hospital in Melbourne in Australia.
Bill Gasiamis 7:10
Then from there, there was a lot of people that came around me to make things better for me. And thankfully, they took that decision-making part out of my hands because I was not in any shape. Nor did I have the Gosh, for lack of a better word, the intelligence that I needed to have around physical health.
Bill Gasiamis 7:38
So if there’s such a thing as emotional intelligence, and if there’s such a thing as IQ, I didn’t have physical intelligence, I didn’t understand that my body had dramatically given me feedback by going numb on the entire left side, I didn’t understand that it was communicating that you need to go and get some help. So I didn’t go for a long, long time.
Dr. J Mocco 8:01
Well, it’s really interesting you say that, because maybe I’ll make you feel a little bit better. Because first of all, that’s normal. In general, for human beings, right? It’s fundamental to our nature, that we don’t think about bad things happening to us. Otherwise, you’d be walking around afraid all the time.
Dr. J Mocco 8:18
So that that’s a natural human instinct, right? And everyone’s heard about this for heart attacks, right? If you feel chest pain, if you feel pressure, you gotta go in because people will say, oh, I’ll just leave it off, or I’ll ignore it. So we have that problem with stroke and brain hemorrhage as a stroke as well.
Stroke Affects Our Thinking Ability – Dr. J Mocco
Dr. J Mocco 8:38
We have that problem with stroke, but then and this might make you feel a little better. But when you have injury to your brain, it specifically affects your ability to really understand what’s going on. I once took care of a stroke doctor, a neurologist who specialized in doing emergency room call and taking care of patients with strokes.
Dr. J Mocco 9:00
Who was having a stroke, and couldn’t move half his body. But because of the stroke, he was not aware that he couldn’t move his body. So we asked him to lift up his arms, he lift up just one arm, right? That’s one of things we look for his arm weakness. And I’d say you realize that he’s like, no, everything’s fine.
Dr. J Mocco 9:19
Because the stroke, your brain is who you are your awareness of the world is all processed in your brain, all of the matrix. And so if there’s something going on in there, it actually limits your ability. So it wasn’t just you being a little stubborn and denying it. Your brain had a little bit to do with that too.
Bill Gasiamis 9:37
Good. It’s a bit of story to tell people that I was stubborn and denying it. But I do appreciate the fact that I’m having a stroke at the same time and it’s impacting my my thinking. It’s very common because almost everybody I interviewed tells me the same thing. Very few people that I’ve interviewed, about their stroke will say to me, I knew I was having a stroke. I went to the doctors immediately, and I did the best thing, most people don’t get that opportunity.
Dr. J Mocco 10:05
A reason why I emphasize that is for loved ones and family members, like you said, people took it out of your control, they took it out of your ability to continue to deny. And so I would say that to anyone listening, that’s a loved one. Nobody wants to tell their father or mother or brother or sister. Stop it, you’re going to the hospital right now. But actually, we have to feel empowered to do that, in those sorts of circumstances.
Bill Gasiamis 10:31
I completely agree with you. Because a little while after that happened to me, a friend of mine had a mini stroke. Again, she was in her late 30s. And her son who was about 16 at the time, of course pays attention to what mum tells him to do or not do so when his mum said, I’m fine, do not do anything, do not call the ambulance, I’m not going to go.
Bill Gasiamis 10:54
He paid attention to her, he did what she said his instinct was saying that something was wrong. But of course, he’d listen to his mom, he didn’t know what was exactly happening. And at some point, I think I got involved in the conversation because she was nearby my house, this friend of mine, and I said ignore what she’s telling you just get her the help that she needs. And they ended up taking her to the hospital. And it was a mini-stroke she was also 37 years old. I mean, it’s ridiculous.
Dr. J Mocco 11:23
You bring up a really important second point there, which is that’s the other tool of denial is people say, “Well, I’m young” or “I’m healthy”. That doesn’t matter, stroke strikes everybody. I have treated so many 20 and 30 and 40-year-olds, it is not uncommon. Certainly, as we get older, we suffer more healthcare problems. But it’s important for people to realize that just because they’re in their 30s, they still could be having a stroke. And unfortunately, I’ve even had personal friends that have experienced that.
Bill Gasiamis 12:02
Yeah, what did they say it’s one in four people will experience a stroke in their lifetime.
Dr. J Mocco 12:09
It’s shockingly common. And I challenge you to talk to any friend or person you know, obviously, for your case, it’s everyone you know, because of yourself, but I tell people talk to your friends, I would be dumbfounded if your life hasn’t been touched by stroke, if you are one of your loved ones, or one of your friends haven’t been significantly affected.
Dr. J Mocco 12:33
Because it is ubiquitous it’s extremely common. And on top of it, there’s an additional challenge in that it’s the leading cause of long-term disability. So it’s not only something that can be devastating, but it’s something that can leave people in a very dependent state. When you poll populations about what situation they don’t want to experience where they don’t want to be in the future. Stroke is the most feared because nobody wants to be left dependent.
Bill Gasiamis 13:06
It is and it does stay with you for life. It’s something that even though I’ve had brain surgery to remove the faulty blood vessel, and it’s no longer possible for it to bleed, I’m still left with a deficit on my left side, the numbness, the altered sensation, the proprioception issues, the balance issues, all those things that came as a result of the life-saving surgery now are with me forever, and they’re never gonna go away.
Bill Gasiamis 13:39
And that’s the hard part. It’s a hard thing to reconcile, especially for people who end up more physically unable than me, for example, people who end up in a wheelchair, or people who end up with hemiplegia. They can attest to the fact that not only does it change your life instantly, it then changes your identity, and then getting that back is often difficult and a hard road.
Bill Gasiamis 14:09
And I just posted on my Instagram, I just posted a question that my followers asked. And one of the questions that I posted was, what is one of the little wins that people have had recently on their journey to stroke recovery?
Bill Gasiamis 14:28
And some of the simple things that they’ll tell you is that after five years, they were able to tie their shoelaces, or after three years they were able to walk a few miles or some little things that most of us took for granted and thought insignificant at the time, have all of a sudden become really serious and amazing accomplishments for people who have been trying to get back there for months, for years, if not decades.
You Can Keep Getting Better
Dr. J Mocco 15:01
I think that is so true. You know, someone once told me, try to walk around for a day with not being able to use one arm, you don’t realize all that. You think about it for obvious things, but all the little things you do during the day, if you’re limited in that way, but I want to highlight a positive thing that you just touched on, that I think is worth sort of broadcasting, which is, people would say that after two years, they tied their shoelace, right, after three years, they walked a few miles.
Dr. J Mocco 15:37
So that’s important. With stroke, one of the amazing things is you can keep getting better, even two years and three years later. And so for any person listening, or anyone who’s been through that the recovery potential exists, and it exists for a long time.
Dr. J Mocco 15:57
So obviously, the most important thing is to not have it or to avoid it, or to fix it quickly enough that there’s no injury to the brain. But I always meet with my patients, at three months at six months, mainly want to make sure they’re getting the right therapy and rehab and such, but also to make sure they understand that there’s still lots of potential for recovery, even two years and three years later, to continue to improve.
Dr. J Mocco 16:22
A lot of times, you know, if you injure some part of your body, after a month or two, it’s still the way it is, that’s just the way it’s going to be, it doesn’t really change dramatically over the delay time period. But your brain has incredible plasticity.
Dr. J Mocco 16:41
And you can still affect improvement over a long period of time. So keeping that positive attitude, and keeping the tenacity of working at it and working to improve it, will allow someone who can’t tie their shoelaces at six months to be able to tie their shoelaces in two years. I hope that brings a positive message to people that they realize potentials there.
Bill Gasiamis 17:05
I think it does, because some of your colleagues, and I don’t want you to speak on behalf of them or comment on what your colleagues may be doing that’s not right, or that’s a little flawed in their thinking is some of your colleagues will say to people, that person is never going to walk again, I get people on my podcast, who I interviewed who will tell me often that that’s what the doctor said to them when they were in the ward.
Bill Gasiamis 17:37
And it’s crazy that someone would say that to a patient who’s just in the acute phase of stroke. And I feel like the reason is because they miss that opportunity to understand what you understand, because of the additional work that you’ve done to have your master’s in science, which is the research part of the work that you do.
Bill Gasiamis 18:01
Whereas some other doctors perhaps have gotten to that point where they’re treating people in hospitals, and don’t have that additional skill set of understanding research and data and numbers and then seeing long term impacts of stroke on people after a certain period of time, not just in the acute phase.
Bill Gasiamis 18:21
So I think that’s kind of what they’re missing. They’re missing that understanding of the long-term view. And perhaps they didn’t get to see a lot of stroke survivors many years, or the same ones many years after they first came across them. And therefore they don’t get the opportunity to go, wow, that person wasn’t able to do all those things when I first met them, and now they can do all these things.
Bill Gasiamis 18:44
And I think that they also don’t realize that there’s power in their words. And it could be for the case of power for evil rather than good. And I know that’s not their intention, and maybe they’re trying to decrease the expectation. So people don’t get disappointed, but stuff that you know, I hear that most stroke survivors would rather have some kind of hope at the beginning that there’ll be an improvement and then they can work towards getting there rather than having all hope crushed at the beginning.
Dr. J Mocco 19:27
Yeah, that’s a tough one. I do think that there’s a couple things going on there. I think number one, I think it’s really important to realize that there are a lot of doctors out there who are all trying to do their very best. But the reality is also expertise matters.
Dr. J Mocco 19:49
And a lot of times still stroke is cared for because of work force needs and allocation of resources and all the rest. Stroke is carried for by people who are not specialists, or in places where there aren’t specialists. And I do think that causes a real problem, because, as you said, there’s a selection bias. If you’re not a specialist, if you’re not someone who really lives and breathes it every day, and dives into that, it’s hard to know those things.
Dr. J Mocco 20:21
And so frankly, the fault here is with myself and with my colleagues who are specialists to make sure we get the word out there well enough to the broader medical community. Because you are right, unless you see these patients a year and two years and three years later, unless you’re working with them, it is hard to realize, I’ll tell you, one of the things I do is when I see a stroke patient a year later, two years later.
Dr. J Mocco 20:45
You know, I’ve had patients where there were people in the healthcare team who felt that patients should not receive for their care. And then two years later, they’re essentially normal. You know, they’ve got things like you said, but no one on the street would know. And, you know, what I do is I always ask those patients, and they’re almost always willing to are able to, I asked him, would you mind coming with me up to the ICU?
Dr. J Mocco 21:12
Would you mind talking to some of the other ICU doctors and the nurses and letting them see because they don’t remember, because when we see a sick stroke patient with a breathing tube, and all the wires and the connections, it’s hard to see and now this person comes in, and they’re quaffed and they’re dressed normal, and they look great.
Dr. J Mocco 21:31
And they say, oh I’m a Mr. And Mrs. Smith, that was in bed 12 for three months, two years ago, and then the light shine in their eyes, and they realize, so I do believe that the vast majority of physicians are in it to help people and do their very best.
Seek Out Specialists – Dr. J Mocco
Dr. J Mocco 21:49
And so it’s a call to arms for the physicians that are specialists who have put that extra time and gotten those extra degrees to get the word out to our colleagues, you know, along the crew. But on the flip side, I would encourage any listeners, seek out specialists seek out the people that live and breathe this.
Dr. J Mocco 22:13
I do think in the end, it matters you know, I used to say you go to a Ford guy to fix your Ford and the Chevy guy to fix your Chevy. You know, don’t go to a generalist go to the people that really know what they’re doing for that part of your body, that brain.
Bill Gasiamis 22:29
Couldn’t be more important look, I did sack, a few doctors in my time going through the early stages. And that was exactly because of that I just didn’t feel cared for properly. And that wasn’t part of the conversation. And I was the person they were talking about at the end of the bed.
Bill Gasiamis 22:47
And it’s kind of like, I need to be involved guys, you need to let me know what’s going on good, bad or indifferent, I need to know and they weren’t doing that. So I just packed my bags and we left we went elsewhere with a referral etc. we did it properly.
Bill Gasiamis 23:02
And then we sought out exactly the kind of person that I knew was going to talk to me the way that I needed to be spoken to. And, she was amazing, an amazing neurosurgeon, who’s a professor of neurosurgery now at Royal Melbourne Hospital in Melbourne where I’m from Dr. Kate Drummond absolutely amazing lady.
Bill Gasiamis 23:27
And she just told me straight down the line exactly the way that it was and the confidence that she gave me an her ability and her team’s ability to sort out this difficult-to-get-to AVM in the middle of my brain near my cerebellum, and about four centimeters in from the ear.
Bill Gasiamis 23:47
There was I felt like handing myself over to her was the smartest and best decision I’ve ever made in my life. And it turned out to be exactly that. So that’s why I’m eternally grateful for people like you because it’s life altering and life changing.
Bill Gasiamis 24:08
It’s giving us a second opportunity, it’s important to pump your feathers up a little bit every once in a while, I’ll let you know I’m sure people do. But I think it’s still important to say that. And I’ll tell you why. Because how many years does it take to become a doctor, a medical doctor?
Dr. J Mocco 24:26
It depends on the person, here in the United States that process was eight years.
Bill Gasiamis 24:31
Okay, and then you did your master’s in science. How long did that take?
Dr. J Mocco 24:35
Well, I did a neuro (inaudible) which was seven years. And during that time, I did a master’s in science. And then I also did a fellowship to be a true specialist in stroke, which was another two years. So when you add that all up, I don’t really want to do the math. It’ll get me depressed, but I wouldn’t trade it for the world. It’s an amazing job.
Bill Gasiamis 24:57
I get it right so this is the thing people need to appreciate the people on the other side of the screen listening to this or stroke survivors, they do appreciate it. I just don’t think they realize how much and in that time, you’re hard on yourself, because you say, now I’ve got to come up with a time to tell everybody about all the things they should know. And here you are, it looks like you’re in your scrubs. You’re in the room in the hospital, I imagine. And you’ve jumped on Zoom, and we’re going to do this conversation. We’re here, because of world stroke day on the 29th.
If you’ve had a stroke, and you’re in recovery, you’ll know what a scary and confusing time it can be, you’re likely to have a lot of questions going through your mind. Like, how long will it take to recover? Will I actually recover? What things should I avoid in case I make matters worse?
Doctors will explain things. But obviously, you’ve never had a stroke before, you probably don’t know what questions to ask. If this is you, you may be missing out on doing things that could help speed up your recovery. If you’re finding yourself in that situation, stop worrying, and head to recoveryafterstroke.com where you can download a guide that will help you.
It’s called seven questions to ask your doctor about your stroke. These seven questions are the ones Bill wished he’d asked when he was recovering from a stroke, they’ll not only help you better understand your condition, they’ll help you take a more active role in your recovery, head to the website now, recoveryafterstroke.com and download the guide. It’s free.
Bill Gasiamis 26:30
Of the this month. And as a result of that I couldn’t be more excited to have a podcast that I started in 2015 has 220 or so episodes now. And now I’m having to raise awareness in that space where I felt awareness wasn’t available, and there wasn’t enough space for it.
Bill Gasiamis 26:53
And there wasn’t enough for stroke survivors to sort of learn from somewhere where we could learn from each other about stroke. And that’s why the podcast was born it was born so that we can encourage each other. And we can find a way to get beyond all of the troubles that we are facing because of stroke.
Bill Gasiamis 27:12
And also to bring experts like you on so that I can offer hope and give people that long-term view and say, Hey, I know it’s tough now, but it’s gonna get better. And even though it’s really, really tough, and it’s the hardest thing you’ve ever done. There’s light at the end of the tunnel.
Dr. J Mocco 27:28
Well, I was just gonna say I agree, I think that’s an incredibly important message, that there’s light at the end of the tunnel for those patients that have been through it. But I want to throw out a challenge to your listeners also, because something that you said a second ago, really resonated with me.
Dr. J Mocco’s Challenge
Dr. J Mocco 27:48
And that because of the kind of stroke you had, in one small way you were fortunate because you had the ability to search out and find the right doctor. There are kinds of strokes, particularly what’s called ischemic stroke, you have what’s called a hemorrhagic stroke.
Dr. J Mocco 28:07
They’re kinds of strokes, where people don’t have that ability, they’re just brought to a place, they don’t have the ability to check and search. And so there’s something that your body of listeners can do and our community more broadly can do is to engage with our governmental bodies, our emergency medical systems, our legislators, whatever the way it works in your area.
Dr. J Mocco 28:35
To make sure that those patients that don’t have the ability to make a choice that don’t have the time to find out that our government that our society has figured out to ensure that those patients get taken to the right places, right, because that’s important.
Dr. J Mocco 28:53
Right now, the biggest predictor of whether someone who has one of those bad strokes is going to have a good outcome or a bad outcome is where they get taken that very first time that they get taken to a place that can treat them, where they get taken into a random emergency room that says, Oh, we can do stroke.
Dr. J Mocco 29:10
But they haven’t demonstrated that they have all of the correct tools to take care of it. And so I would put that challenge out there because something that you said really resonated to me on that the ability to choose or not choose. And for those that can’t we need to work within our communities to make that happen.
Bill Gasiamis 29:27
Yeah, I couldn’t agree more specific stroke hospitals in Melbourne exist. We have, I think about four or five of them where if there is some kind of a diagnosis that’s made, whether it’s over the phone, if you’re in our 000 in Australia is the emergency number in the United States, it’s 911.
Bill Gasiamis 29:46
So if we ring 000, and we say, well, I’m suspecting that this person is having a stroke, they’ll send out a stroke ambulance, and then they’ll get that person to a stroke hospital and that’s that part. That’s the part that we can do. We can know the signs of stroke, which we’ll talk about.
Bill Gasiamis 30:03
And then once we know the signs of stroke, we can specifically say, to our emergency services, I think this person is having a stroke, and therefore, they will then make the correct decision to get that person A the right ambulance and B to the right location.
Dr. J Mocco 30:18
You mentioned something else that’s really important about calling the triple zero or the 911, or the emergency services. Because the other thing people say, Well, I don’t want to take an ambulance drive me to the hospital, or I’m going to drive myself. And they may even say, well, I can get there faster in my car.
Dr. J Mocco 30:34
But I want everyone to know, while that may or may not be true, probably isn’t. But let’s say it even is, what you don’t realize is if the ambulance is taking you, they’re calling the hospital ahead. So they’re getting the hospital ready to receive you, they’re getting the CAT scan, ready to scan you.
Dr. J Mocco 30:51
And so when you get to the hospital, your process to getting treated for your stroke will be so much faster. If you’ve called 911, or 000, rather than trying to just drive yourself in and show up and say, Hey, I think I’m having a stroke. So that’s important, you touched on it. And it’s a great point to emphasize,
Bill Gasiamis 31:13
It’s very important because not only that the ambulance is also equipped to support you stabilize you while you are in their care. So even if you get there quicker, you’re not driving on your own, you’re not being stabilized supported, you can have an accident, you can have a collision, you can injure yourself or somebody else seriously.
Bill Gasiamis 31:32
And we don’t want to be doing that. And I say that because I’m about to admit that I drove myself to the hospital the second time, I had a brain hemorrhage. And I did exactly the opposite to what you just said. And then when I got there, I went to emergency I said, I think I’m having a stroke, you guys need to get me into the CT scanner. And they looked at me and said, what kind of drugs are you on? They didn’t actually say that. But they were thinking it.
Dr. J Mocco 31:57
Yeah, you could see it in their eyes.
Bill Gasiamis 31:59
Yeah, right. And I’m like guys, there’s no time you need to get me in, you need to get me in I’m having a stroke. And they’re saying to me, give us your details. Tell us who you are, what’s happening, you know, we can’t just take you in, you gotta give us some information. I gave them my name. It was the Royal Melbourne Hospital that I driven myself to.
Bill Gasiamis 32:17
And then they said, Okay, now we have your patient records. And sure enough, they put me in a wheelchair, they gave me the red carpet treatment, and I was straight in and I was in CT scan. And of course, it revealed that I was having a bleed on the brain.
Bill Gasiamis 32:30
And this time instead of this, you know how normally in a CT room or in a radiography area, there’s a couple of people operating the machines and checking that everything’s going correctly from the back of the window. This time there was a sea of people in the back of the Radiography room.
Bill Gasiamis 32:48
And I’m sure they wanted to see who this crazy guy was who walked in saying that he’s having a stroke. So it was the wrong thing to do. But again, it was the decision that I made under duress of a blood clot in my head and a bleeding brain.
Dr. J Mocco 33:07
But it’s better than saying I’m gonna go take a nap and sleep it off. So of all the choices you did, okay, but I would encourage people it seems like more inconvenience, but it’s actually pretty important because the ambulance would have already provided them that information as they were bringing you in. And that would have made it more efficient.
Bill Gasiamis 33:28
Yeah, it’s the safest route to hospital that’s for sure. So what else can we do to improve patient outcomes? I know that doctors are doing a lot. So what we can do, we’ve spoken about actually, briefly, we’ve said that we can not pay attention to stroke survivors or people who we suspected unwell from a stroke.
Bill Gasiamis 33:48
When they tell us that they want to go to hospital, we said that already. We said that they can call the ambulance better off calling an ambulance before they decide to drive, make sure we improve outcomes for the people that are outside of the car, and also for the people that are inside the car.
Bill Gasiamis 34:04
And now we want to get them to hospital as soon as possible. Because in the case of an ischemic stroke, there’s a lot that can be done to open up the blood flow to that blood vessel again. So tell me a little bit about some of the stuff that happens there.
Dr. J Mocco 34:19
That’s right, well in the in the most common type of stroke, which is the ischemic stroke, a clot and instead of bleeding into the brain, it goes up to the brain and blocks an artery. It’s sort of like getting a pipe clogged. And when that happens, blood flow can’t get to the brain tissue and it slowly starts to die.
Dr. J Mocco 34:40
It sort of like being unable to breathe, being underwater it’s getting starved of oxygen. But we know now unequivocally what’s been proven definitively and a bunch of very important big randomized trials that came out seven years ago, little over almost eight years ago now.
Dr. J Mocco 34:58
That showed that if you get in here and you have one of those blockages, and it’s giving you a significant stroke, and we go up there and we take the clot out that’s causing the problem, and we restore the blood flow, essentially function like a really fancy plumber, and we take that clot out and restore the flow, that patients do much, much better.
A Numbers Game – Dr. J Mocco
Dr. J Mocco 35:20
And this is important, it’s really important to hammer this one. Because there’s a lot of things we do in medicine, that are helpful, that are good. But you’re playing a numbers game, it’s odds, right? You know, to do a lot of regular medical therapies, protective therapies, you have to treat 50 people, 40 people in order to help one person that’s typical, it’s okay, right, but you’re improving your chances of doing well.
Dr. J Mocco 35:46
And some of the strongest, so if you think you’re having a heart attack, and you go in, and they go do an intervention to check out your heart, the numbers around between one in 13, and one in 16 people that you do that procedure on that you actually definitively helped for sure.
Dr. J Mocco 36:04
For this kind of stroke, if you’re having a major stroke with a blockage, the number of people you need to do the procedure on in order to help someone be independent, is two. Every two people you treat, one of them is going to be saved from disability and death that they would have otherwise had.
Dr. J Mocco 36:24
Think about that. I mean, it’s literally, it’s literally without question, among the most positive, most powerful, if not the most powerful treatment we have for sort of any disease that exists. But here’s what’s a killer. Even though we have this, among the most powerful treatments that exist in all of medicine, right now, only about 10% of people ever even get a shot at it.
Dr. J Mocco 36:48
How devastating is that? Something like 85% to 90% of people never even get a shot at the treatment. Because they take too long, it’s not their fault, but it takes too long, the process takes too long to go to the wrong hospital, they sleep it off, that you know, different that’s the other reason by the way.
Dr. J Mocco 37:10
The other reason for an ambulance, the ambulance knows to take you to the right place, you just get in the car and you drive to wherever your local places, they may or may not have that ability to treat it. So for all these reasons, if we think a stroke is happening, time matters.
Dr. J Mocco 37:26
So we got to get you there as quick as possible to treat you now. That doesn’t mean say oh this has been going on for 10 hours, I guess there’s nothing to do. The truth is we’ve shown that it’s helpful, even 24 hours later, which really means it’s helpful even 48 or so we just only studied out 24 so far.
Dr. J Mocco 37:46
Born is if it’s happening, you get there, because as soon as we can provide the help, we can just last night, nine o’clock 9:30 last night, I treated a young woman, very young actually see what she’d been like 38 39 years old, with one of these strokes.
Dr. J Mocco 38:05
And she had been having the symptoms for 21 hours. Unfortunately, she was actually at a different hospital, where it just wasn’t recognized or picked up. And then when they did, she came over right away. So these are the challenges. And we’ve got to get that number from 10% to hopefully 100% or pretty darn close.
Dr. J Mocco 38:26
That’s why we do things like this. And thank goodness for you. And people like you that are getting the word out talking with people communicating, it’s incredibly important that we address these things very, very quickly, about 80% of all strokes are these kinds of stroke or ischemic strokes.
Dr. J Mocco 38:43
About half of them are the client where we can go up and take the blood clot out. So in the United States that’s close to half a million people, at least a year that we couldn’t be helping, and we’re instead we’re helping about 50,000 so we got to we got to improve on that.
Bill Gasiamis 39:01
Yeah, numbers have to get better. And when you’re helping those 50,000 and hopefully it becomes 500,000 hopefully what that means is that that’s 500,000 People getting back to being productive, that’s 500,000 people being part of the community again, that’s 500,000 People that are not dependent on you know, social services or services from other areas.
Bill Gasiamis 39:28
That’s, you know, 500,000 people that have got back to their families and can be supporting them in being a dad, a mom, a brother, a sister, whatever. That’s so many people that can just go back to being the most active member of their community as they possibly can and their family as they possibly can. And the ripple effects are just immeasurable.
Dr. J Mocco 39:51
The ripple effects are huge. So it’s not just 500,000 people that are saved from disability, 500,000 caregivers and in fact, it’s usually about two caregivers per patient that’s disabled, right? So it’s a million people their lives have been changed as well to have to care for their loved ones or you know, provide support for their community or the person they’re affiliated with.
Dr. J Mocco 40:16
So it’s a lot, it’s a devastating disease. And it’s a fight, it’s a battle for us to get the word out there to communicate with people so that they reach out and they engage with their communities, and then their civic unit to get legislation or EMS protocols or, you know, guidance, departments of health, whatever, to get patients, to the hospitals that have the expertise as soon as possible. And that’s what we just have to keep working at, we just have to keep putting the time in.
Bill Gasiamis 40:54
We’re going to ask some more of our listeners and people watching on YouTube, what we’re going to ask him and this time I am, is I’m going to say that if every person who listened to this podcast episode, shares it on their Facebook, their social media, wherever they can, if they shared it, to the people that love them, just to the people in their community, what that will do is A it will help them raise awareness about the condition that they’re experiencing, that they’re going through.
Bill Gasiamis 41:23
And also, it’ll help raise awareness about prevention. And that help create a conversation around how other people who are out there who have not experienced a stroke, how they can become aware of strokes, so that in case one of their relatives, one of their loved ones, one of their work colleagues, experiences, the symptoms that we’re going to talk about now, or the signs of stroke.
Bill Gasiamis 41:46
That perhaps what they can do is know how to respond quicker. And as a result, support that person getting the help that we want them to get as quickly as possible, so that they can be eligible for thrombectomy, so they can be eligible for all the interventions that are going to improve outcomes. So the FAST acronym is used worldwide. And we talked about F standing for face.
Dr. J Mocco 42:19
I’m gonna jump in there, I’m gonna give you a little hot update. We’re trying to push B.E.F.A.S.T.
Bill Gasiamis 42:27
Okay, let’s do it.
Dr. J Mocco 42:29
All right, we’re gonna shake everything up here. Okay? Because particularly it’s involving the back part of the brain, like the cerebellum, right, one of the things you can get as balance problems, or vision problems. And so we’re going to push to your audience, hopefully, so that they’re aware so they can help their loved ones so they can tell their loved ones.
Dr. J Mocco 42:53
No, you have a B.E.F.A.S.T, we’re calling 911, we’re calling 000 is B for balance. So the person has significant balance problems that can be a sign they’re having stroke, E for blurry eyesight or loss of vision, right. And that’s a TIA as well, by the way for someone who lose vision in one eye. I just did a surgery on Sunday morning, for a patient who had that problem, right.
Dr. J Mocco 43:20
And then we go to the F.A.S.T face, one of part of your face drooping your face being asymmetric arm weakness, if they try to lift up their arms, they can’t lift one of their arms is hanging down, they may not even recognize that they’re having that problem.
Dr. J Mocco 43:34
But it’ll be immediately apparent or speech, difficulty, slurred speech, or a lot of times people will have trouble just getting words out or understanding. Or they’ll say words that don’t make sense. You know, salad, bag, door, instead of, you know, I think I’m having a stroke, the connections get messed up. And then we lock it down with time T, for B.F.A.S.T time to call emergency services call 000, call 911. We’re always evolving, that’s our new, hot mnemonic to get out there.
Bill Gasiamis 44:11
I have to say I’ve seen that a lot in international discussions about stroke, but haven’t seen it much in Australia B.E.F.A.S.T. I’m aware of it. But the Stroke Foundation in Australia still does the F.A.S.T acronym. So maybe they need to look at that at some stage. I’d say they’re already discussing that and looking at how they can roll out B.E.F.A.S.T and change the conversation.
Bill Gasiamis 44:35
But I do like that because my stroke wasn’t F.A.S.T. I didn’t have any issues with my face that were visible. I didn’t have arm issues, I didn’t have any speech issues, the time thing was out the window. So everything I did wasn’t F.A.S.T and a lot of people who I do speak to and have asked on my Instagram, haven’t had a F.A.S.T stroke.
Bill Gasiamis 44:59
So some of them do then decrease that number when we do add balance, and eyes because a lot of them have had eye issues, and often some of them fell over because they had balance issues. So I do like that. Now let’s talk about the Get Ahead of Stroke campaign.
Bill Gasiamis 45:23
I know we’ve touched on a lot of things about how we can improve outcomes for people how we can get ahead of stroke, from the perspective of the conversation between perhaps stroke survivors in my case, and the community around me, and then all the other shock survivors listening in the community around them, if we could kind of get them to do that.
Bill Gasiamis 45:47
They will get ahead of stroking that they will make other people aware of something they weren’t aware of before, even if it’s just in the back of their minds. So if they recognize something in the future, they might go, I wonder if that’s stroke? I’ve heard about that somewhere. Tell me what good ahead of stroke is, it sounds like it’s a campaign that you guys are running.
The Get Ahead of Stroke Campaign
Dr. J Mocco 46:09
Exactly right. So the Get Ahead of Stroke campaign is something that’s primarily organized by the SNIS society neurointerventional surgery, but also a number of collaborative and associated organizations that are really trying to improve stroke care.
Dr. J Mocco 46:28
And what we often say is systems of care the way people get to treatment, and that comes by two ways, raising public awareness. Getting out there communicating please, to your listeners, like you said, share it on Facebook, share it on Twitter, get the word out there, because the more people are empowered, the more people that know, if they have the symptoms, they have to get treated, we’re gonna save lives.
Dr. J Mocco 46:51
And then also policy, how can we engage with those who drive policy, our leaders, our government officials, our communities, even our hospitals as entities to make them more aware? How do we save more lives? How do we improve the outcomes for stroke patients?
Dr. J Mocco 47:09
As we get ahead of stroke it’s been tremendously successful. We’ve shifted policy broadly across the United States, we’ve engaged internationally. But the fight is far from over, you know, there’s a lot to be done, and a lot of difference to still be made. But even if one person hears this, and they respond, I think that’s awfully important.
Dr. J Mocco 47:34
And I’ll tell you one last thing, just as we’re talking about the symptoms, because you’re right, I love the real world experiences that you have right hearing from your followers or your population per se. You know, I didn’t have those F.A.S.T symptoms, and I think adding balance and eyes helps a lot. But along your lines, I want to add one more, which is you know, if someone has a significant headache, new, sudden onset, something different than they’ve had before.
Dr. J Mocco 48:07
Okay, you know, there are people who never had headaches or people that have headaches, I get headaches, not infrequently. Take a little Tylenol, it’s fine. This is different. If you have a different thing and new, severe headache of some sort.
Dr. J Mocco 48:20
You should get that checked out. All right, that’s another kind of hemorrhagic stroke. From a vascular malformation, a weakness in a blood vessel, an aneurysm and AVM, something like that. It’s certainly worth evaluating. So just throw that one in there be fast plus headache.
Bill Gasiamis 48:38
If I do think about it, the first sign that nobody was able to confirm for me anyway, my first experience where I there was definitely something wrong with me, when I ignored it at the beginning, was in February 2012. In about September of 2010, I had one of those most ridiculous, crazy, unbelievably bad headaches, and it lasted for about three days.
Bill Gasiamis 49:06
And I did actually feel that bad that I took myself to hospital. And they did run every test that you can possibly imagine including a lumbar puncture. They were suspecting a bleed on the brain. But they couldn’t find any sign of it. And they didn’t run MRI, they only did a CT scan and didn’t pick up the arteriovenous malformation in my head.
Bill Gasiamis 49:32
And I believe that that was the first sign of my brain hemorrhage that was going to come. But of course when we’re talking about that experience, nobody can link it and it’s fair enough and I don’t expect them to link it but I was so unwell that I couldn’t go to see the team that I loved in the football in Australian football in the final game of the season to win the championship, you I was that unwell.
Bill Gasiamis 50:04
Where those championship games come around once in a lifetime, maybe if you’ve got a great team, they might come around three or four times in a lifetime. So by the time that Saturday afternoon had come up, I was six or seven days beyond the first incidence of that massive headache that onset, which I couldn’t describe that had never been like that before.
Bill Gasiamis 50:29
And I was still feeling unwell five or six days later, even though I’d been to the hospital, and visited everybody that I could to get to the bottom of it, it settled down, I am assuming I’ve concluded that perhaps the AVM was playing up. And it was just kind of causing some issues and letting me know that it was there in some way.
Bill Gasiamis 50:51
And then it’s settled down, and things got better as I rested. Because I was at the football the following weekend, again, to cheer my team on to that following game. And I was screaming and yelling, and being a crazy person, like sports fanatics are.
Bill Gasiamis 51:07
And I think that triggered it to play up. So that’s my diagnosis. I don’t expect anyone to agree with it. But it was a massive headache. And yes, we can add that to the B.F.A.S.T message. But we can’t talk about it as something that people may experience that has often led to a diagnosis of stroke of some kind.
Dr. J Mocco 51:31
I completely agree. I think it’s difficult to balance all those things. But when you’re having, you know, one of those symptoms, particularly if it’s something that’s new, but something you’ve never had before, it’s important, it’s important to get evaluated, it’s important to do it in a timely fashion, it’s important to go to a place where there’s expertise. And hopefully, you come out on the other side, okay. I will say your doctor certainly did a great job, you seem really fantastic.
Bill Gasiamis 52:04
They are, I’m eternally grateful, and I think I need to have these conversations with people like you, with all my guests so far. Because what I feel like is that I have been given a second lease on life so that I can make a difference in the world society, and I don’t know, in the community.
Making Lives Better
Bill Gasiamis 52:26
And, this is a really easy way for me to do it. Because technology makes it so and because I’m well enough and have the capacity to, I think that I need to make the most of that ability while I still have it. And while I’m young enough to have the energy to do all of that stuff, because from here, and if I decide that I’m not doing it anymore, in a few years time or multiple years, hopefully somebody else will pick up the baton.
Bill Gasiamis 52:56
And I’ll run with it and continue these conversations because, there was nothing like this for me 10 years ago, I can’t imagine what it was like for people 20 years ago. And since the technology exists, and since there’s this ability for us to reach so many people so easily from around the world, I think that we must make use of this technology. We must it’s our duty to make use of this technology, and make life better and easier for people coming through stroke.
Bill Gasiamis 53:30
Because there’s going to be a heck of a lot of them, there’s going to be a heck of a lot of them coming through it in the future. And they kind of need resources and I don’t want their caregivers, their loved ones, their family members to be in a position that I was in and their position that my wife and kids were in and that my mum and dad were in. And all my extended family when they didn’t know J they didn’t know what it meant for this guy who at 37 is in hospital and now has an uncertain future, they didn’t know.
Dr. J Mocco 54:00
That’s exactly right. Unfortunately, I see it every day. And our populations are aging and these are going to be increasingly difficult challenges that we have to address. And it’s absolutely important to get the word out there I love the way you said it.
Dr. J Mocco 54:15
You know you said it with passion and there is an obligation right I mean on some level it’s my job on some level it’s your passion what you’ve experienced, but I would give out there to the whole community that hears this it’s listening. Let’s get the word out there let’s get B.F.A.S.T out there let’s spread the word about this podcast.
Dr. J Mocco 54:34
Even just that even just you know if you have B.F.A.S.T you’re worried it’s a stroke, call 911 get to the hospital you know that even by itself sometimes the little things you could change a person’s life forever. Save their life change their and their loved one’s life forever by taking a little bit of time to forward this or communicate it and put the word out there.
Dr. J Mocco 55:01
I’d highly recommend that anyone who wants you can just Google Get Ahead Of Stroke or go to getaheadofstroke.org. There’s all kinds of little bits of information and news there. You can throw that out there, send the link, say, hey, learn about stroke, take five minutes, check this webpage out anything.
Dr. J Mocco 55:18
Because all of it adds up, right? It’s a grassroots thing and momentum has to build. So that becomes part of our general knowledge as a society. And, I really have tremendous gratitude to you for everything you’re doing along these lines. I’m very appreciative.
Bill Gasiamis 55:38
My pleasure. On that note, I will ensure that getaheadofstroke.org is added to the shownotes people who want to find the link, get a transcript of this episode can go to recoveryafterstroke.com/episodes. And they will be able to see that information there. It’ll be on the youtube description as well. Dr. J. Mocco, thank you so much for being on the podcast and taking an hour of your time out of your day to be on the show.
Dr. J Mocco 56:05
It’s been a real pleasure, and fingers crossed. We changed some lives today.
Bill Gasiamis 56:11
I think we will
Dr. J Mocco 56:11
I think so. Take care.
Bill Gasiamis 56:13
Thanks for joining us on today’s episode. If you’re a stroke survivor with a story to share about your experience? Come and join me on the show. The interviews are not scripted, you do not have to plan for them. All you need to do to qualify is be a stroke survivor or care for somebody who is a stroke survivor.
Bill Gasiamis 56:29
Or you are one of the fabulous people that help other people who have had a stroke go to recoveryafterstroke.com/contact fill out the form and as soon as I receive your request I’ll respond with more details on how you can choose a time that works for you and me to meet over Zoom. Thanks again for being here and listening. I really appreciate you and see you on the next episode.
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