Empowered Sleep Apnea
Some podcasts give you INFORMATION. Empowered Sleep Apnea gives you knowledge. Join Sleep Medicine master-clinician Dr. David McCarty and Sleep Neuroscientist Dr. Ellen Stothard as they do a deep conversational dive into one of the most complex, common, and misunderstood disorders on the planet: Sleep Apnea. Using a combination of humor, fictional elements, and--yes--even CARTOONS, Empowered Sleep Apnea takes you where no other Podcast has gone before!
Empowered Sleep Apnea
Episode 2: TORONTO
Empowered Sleep Apnea: THE PODCAST
Season 2: STORIES FROM THE FIELD
Episode 2: TORONTO
All content © 2023 Empowered Sleep Apea, LLC
To access a complete PDF transcript of this episode, please click HERE!
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A Sleep Doc and a Scientist walk into a story of transformation…
Join Dave and Ellen as the Beautiful Blue Balloon leaves the ISLE, on a quest to seek and understand.
In this exciting episode, our intrepid explorers are regaled by the true and wonderful tale of an endless sinus infection, how this entity disguised a most unusual case of Sleep Apnea, and how the Universe can sometimes provide guidance towards wholeness in beautiful and unexpected ways.
In this episode, we’ll learn about the emerging science of Epigenetic Orthodontia—techniques that can literally change the shape of your face! What’s the risk of new innovations like this? How do they work? What is “Epigenetics,” anyway? What should patients and providers know about it? What’s an evidence-based provider supposed to think?
Never fear: Dave and Ellen harness the power of conversation to unlock these secrets, fueled by the eternal light of Sleep-Geek fascination. All will be revealed!
Special guest this episode: Kate Yeshurun, telling her true story of The Endless Sinus Infection.
About Kate: Kate works for The Kabbalah Centre International as a Kabbalah instructor and global manager of the Roots (Youth) Program. She is also in the process of becoming a certified Birth Doula with DONA International. Kate is passionate about helping individuals navigate the world with more self-love, purpose, and spiritual tools to handle any challenge. She envisions a world in which every human being feels the divinity of their own soul and feels safe and free to be who they truly are...a world in which all humans thrive peacefully together with love and good health! She has moved back home from Toronto to New York, where she currently resides with her husband and daughter.
Contact Kate at kate.yeshurun@kabbalah.com.
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Dr. Ted Belfor and Dave wrote up Kate’s story as a Case Report, which has been submitted for publication and is currently under peer-review. The manuscript for Kate’s Case Report may be reviewed HERE.
A similar transformative Case Report (not Kate!) was recently published in the Canadian journal Oral Health.
Our Website: https://www.empoweredsleepapnea.com
Official Blog: "Dave's Notes" : https://www.empoweredsleepapnea.com/daves-notes
To go to the BookBaby bookstore and view the BOOK, click HERE!
Empowered Sleep Apnea: THE PODCAST
SEASON TWO: STORIES FROM THE FIELD
Episode 2: TORONTO
Episode Transcript
All content ©2023 www.EmpoweredSleepApnea.com
00:00 INTRO (“change the channel!”)
00:23 Disclaimer
Empowered Sleep Apnea is an educational podcast, which is a bit different from a medical advice show. Clinical decision-making in Sleep Medicine can be complex, so even EMPOWERED patients need a partner. Play it smart, and make sure you talk to your healthcare provider before making any changes to your medical treatment plan.
And now…on with the show!
00:44 Main Titles
Empowered Sleep Apnea: THE PODCAST
Season Two: STORIES FROM THE FIELD
Episode 2: TORONTO
01:08 Dave’s Story: Leaving the ISLE
This is Dave McCarty. I’m a physician. And I specialize in figuring out how to help people with Sleep Disorders feel better. I’m a Sleep Medicine specialist.
I spent my career trying to understand Sleep Apnea, and how it affects people. One of the early lessons I learned is that Sleep Apnea is complicated, and that individual patients can experience it very differently.
For example, if I tell you that I just broke my wrist, you’d have a pretty good idea of what my healing trajectory will involve: a cast, some pain-control measures, maybe some physical therapy.
What image comes to mind if I tell you I’m diagnosed with Sleep Apnea? Is it fuzzy? What do you make of the fact that some individuals with Sleep Apnea are heavy, but lots are skinny. Some folks snore, and others don’t. Some folks are always sleepy, some can’t sleep at night. Some folks will die young as a direct result of Sleep Apnea, and others will die old, of an unrelated cause, and they’ll never know they had it.
So…what does the label “Sleep Apnea” even mean?
In the first five-episode season of this PODCAST, we followed a fictional character—Robert—as he learned his way around this diagnosis by exploring a magical ISLE—the ISLE OF SLEEP APNEA (get it?). We learned about the importance of exploring the narrative behind the “label” of Sleep Apnea, to better understand our own sleep-wake complaints. We explored the moving parts of Sleep Apnea, both the obstructive and the central apnea flavors.
We found our new favorite bistro, the Five Reasons Monument Coffee Hut, where we had all the time in the world to explore our own Five Reasons To Treat Sleep Apnea, those reasons being RISK, SNORING, SLEEP, WAKE, COMORBIDITIES.
We learned to deconstruct these REASONS into our goals of therapy, and we learned about navigating life in “treated territory”—which can sometimes mire people in tangles of complications and competing diagnoses.
Finally, we toured the majesty of Five Finger Approach Mountain, and we learned about how to disassemble the process of problem-solving when you have nonspecific sleep-wake complaints, breaking it apart into five smaller pieces that are easier to deal with, what I call the five clinical domains of Sleep Medicine: circadian misalignment, pharmacologic factors, medical factors, psychiatric / psychosocial factors, and primary sleep diagnoses.
For SEASON TWO, I wanted to take our exploration further…off the island…to parts unknown. In SEASON TWO, we are going to collect…stories.
Some stories will be fiction. Some stories will be true. Some stories are about patients and some are about their providers.
All of them will include our friend Sleep Apnea as a main character.
So let’s pack up our recording gear and cartooning supplies…let’s climb into the basket of our beautiful blue hot air balloon—our ship of good hope. Blasting the furnace inflates the balloon, makes us rise, like optimism.
We will say goodbye to our magical ISLE, and point our bearing across the endless ocean, up, up…away…and back to the continent. North America scoots underneath us, the unmistakable Great Lakes. We lighten up on the heat, and, as we descend, we see the lights of Toronto.
Closer still, and we see a neighborhood…closer still…a home. There’s a light on, in the kitchen.
In that kitchen is our first storyteller.
From that kitchen, our first STORY FROM THE FIELD.
Welcome to the program…Kate Yeshurun and her true story…of The Endless Sinus Infection.
05:26 Kate’s Story of The Endless Sinus Infection
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The Endless Sinus Infection
Written & narrated by Kate Yeshurun
Produced by Dave McCarty
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Hi.
My name is Kate. I want to tell you a story about a 9-year sinus infection, and about how the universe led me to a man who helped change the trajectory of my life.
But I’m getting ahead of myself.
The story for me actually started in high school.
That’s when I remember my first sinus infection. That’s when the journey began. With facial pressure, nasal obstruction, and a day off school. Little did I know then that this would be a recurring scenario that would define my young adulthood.
By college, I’d get two sinus infections per year: major congestion, headaches, sinus pressure radiating across my face, interrupted sleep. It was always the same. Doctor visits. Antibiotics. Steroids. Nasal sprays.
And did I mention the fatigue? The terrible, terrible fatigue?
Even in between the “acute” infections, my breathing through my nose was never exactly clear. It always felt like there was some kind of blockage, and air could not flow freely. This was more than just an inconvenience—it was ruining my ability to meditate, which is a very important part of my day! Anytime I tried mindful breathwork exercises, I’d find myself unable to connect to the experience and reap the benefits—mind, body, or soul.
My breathing was taking a toll.
One thing that I’ve learned on this journey: if there are symptoms, somebody’s got a medication. And, boy, did I take medications!
For congestion: there’s the saga of Afrin. For those of you who aren’t familiar, Afrin is a nasal decongestant spray, which means that when you spray it in your nose, it has a direct effect on blood vessels, causing them to shrink. This has the immediate effect of causing tissue swelling to go down, which we perceive as better airflow through the nose. Ahh. Relief!
The problem? The spray itself is irritating, and the blood vessels don’t like being tricked like that. So, when the spray wears off, the nose tends to get more congested than it was before.
You can see where this is leading…
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Over the years, I must have tried everything. Vick’s VapoRub. Neti-Pots. Acupuncture. Every cold remedy on the market.
Of course, nothing really worked. Despite all of these seemingly trusted interventions, I was congested, nearly all the time.
Of course, the breathing issues aren’t an isolated phenomenon. It’s not like you can spend your life mildly struggling to breathe, without paying some sort of price for it.
For me, it’s always been about sleep. Or, perhaps it’s more correct to say: about the quality of my sleep, and how that affects my waking day.
I remember when I was 12, I recall having some mild difficulty focusing at school…and it didn’t take long for the neuropsychiatrist to diagnose me with ADD. That’s when the amphetamines began. It started with Concerta, at age 12.
By the time I was 18, my trouble focusing during the daytime was even more profound, but somehow, I knew that this wasn’t ADD. But that didn’t stop me from using the Adderall they switched me to, as I set off to study at college.
See, by that time, without the medication, I really don’t think I’d have been able to even stay awake.
How could I be expected to feel good during the day, if I couldn’t sleep at night? And boy, the nights were tough. I felt anxious constantly, that was a given. But the more I couldn’t sleep, the more the nighttime itself started to be a source of anxiety.
As soon as the lights go out, the inner voice started talking:
I’m not going to be able to sleep tonight
my brain doesn’t want to turn off
if I don’t sleep I won’t be able to function tomorrow…and so forth
These beliefs, in turn, cranked up my anxiety, bringing on a cascade of more and more negative, limiting beliefs about sleep, and the cycle just continued.
When I discussed these symptoms with my neuropsychiatrist, the answer, of course, was simple: More medication. This time: clonazepam.
Clonazepam is a benzodiazepine. This drug class (like the amphetamines Concerta and Adderall) also happens to be habit forming.
What that means is this: the more you take it--meaning the longer duration your brain is exposed to this medication--the more your brain will get used to it.
Different drugs create different withdrawal syndromes, when the inevitable time comes that your brain senses that there’s not enough of the drug around to make it feel “normal.”
For Concerta and Adderall, the withdrawal syndrome usually involves fatigue, headaches, and lethargy. For clonazepam, the withdrawal syndrome is insomnia and anxiety.
Kind of makes you think, doesn’t it?
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After I graduated college, for the next five years or so, my sinus and sleep issues got increasingly worse. Instead of a couple sinus infections a year, I was now having a sinus infection per season, whenever the weather changed…I could literally feel it in the air…I knew it was coming.
And it wasn’t just the sinus infections. Even my colds were worse than everybody else’s. A minor cold would last for two weeks.
And: you know that painful pressure that happens in your ears sometimes when you’re landing in an airplane? Well, about that time, that started happening too, pretty much all the time, leading to dull, constant headaches.
As you might guess, my life was a constant effort seeking relief. Throughout college and post-college, I entertained a parade of doctors and healthcare providers: primary care, ENTs, an allergist, even an acupuncturist!
All of them said the same thing: “chronic sinusitis.” But no one could pinpoint WHY.
A little over three years ago, I met an ENT who told me that if I didn’t get surgery—to fix my deviated septum and clear out the nasal polyps—my sinus infections would only get worse, and more frequent.
At this point, my future really seemed dire. My desperation was taking shape into action.
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In 2019, I went to the operating room, to fix my deviated septum, and create better openings to allow the maxillary sinuses to drain. At the time, it felt like the only choice.
After the surgery, I had a glimmer of hope. At first, I thought Hallelujah! My nose was a little clearer for a few months. It was never perfect, but…HEY!... I could breathe a little easier. Maybe I was in the clear!
By spring, though, my hopes were dashed with another typical relapse, with facial pressure, headaches, worse sleep, the whole 9 yards. A CT scan at that point showed that my sinuses looked worse than they did before the surgery. My bitter disappointment with yet another failure only made the illness worse.
Two things got me past this point of black despair: My spiritual faith in Kabbalah, and a very special dentist named Dr. Ted Belfor. Though, now that I’m saying that, I know it was Kabbalah that led me to Dr. Belfor, so maybe it’s just one thing that got me through.
All I know is that I’m grateful.
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In the Fall of 2019, I started a new job. It was one of those meaningless conversations one has with one’s coworkers, just passing the time. I mentioned my ongoing sinus saga to my conversation companion, in passing.
“You need to see my husband,” she said. “He’s a dentist, and he has a new way of dealing with issues like that.”
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At that point in my saga, please understand, I’d been through a lot. This was not, as they say, my first rodeo. I made the appointment, and I did my best to hide my skepticism. During my first visit with him, I admit, I was only half-listening.
I’d heard so many shpeels before.
But there was something about Dr. Belfor that was different. When he talked about my problem, he was poking at a much deeper level.
When he talked about my problem, he spoke of root causes. He listened to me intently when I told him about my sleep quality, and about how tired I always seemed to be.
When he looked in my mouth, he seemed surprised, and told me that my visible airway was “wide open”, that the back of my throat did not have the typical “floppy” and dysfunctional look that we usually associate with Sleep Apnea.
However, he said something I’ll never forget. He said that Sleep Apnea could still be part of my problem, not because I was heavy, or because my airway was floppy, but because of the shape of the bones in my face.
He explained to me that the sinuses can get inflamed by many mechanisms as a direct result of the Sleep Apnea events. He told me he wanted to send me home with a screening test for Sleep Apnea to learn more.
This statement really rocked my world.
I couldn’t believe it. I always thought that Sleep Apnea was a heavy person’s problem. I have always been healthy and fit—so how could this really apply to me?
I went home and I did my research. I found out that there are different presentations of Sleep Apnea, because there are lots of different things that contribute to it. I started to learn just how complicated this disorder is.
Dr. Belfor sent me home with his high-resolution pulse oximeter device, a wearable finger-mounted gadget that measures your blood oxygen saturation continuously. That way, if you’re having periodic difficulty with airway blockage, you can literally see the oxygen level bouncing up and down. A normal result should look like a fairly straight line across the page. An abnormal result tends to zig-zag.
The body wants to keep oxygen levels normal and stable, you see? It doesn’t like instability. Zigzags are a no-no.
I gathered my courage, and decided to go through with the test. When the results came back, I was astounded to see not just zigzags, but LOTS of zigzags! My test showed that I was having 18 significant oxygen drops per hour of sleep.
That’s a level consistent with a moderate degree of Sleep Apnea.
One contributor to Sleep Apnea happens to be the shape of the face: the upper jaw, the lower jaw, how they fit together, and how the tongue functions. I learned that all of these components may conspire to create breathing problems during sleep, which can compound breathing problems during the day…hence: chronic sinusitis.
I learned that the “fight or flight” stimulation that happens during Sleep Apnea events is a likely contributor to anxiety symptoms, and to insomnia. I learned that the poor-quality sleep was a probable contributor to symptoms that had been ascribed to ADHD.
As I said: I was skeptical, but I’m also a mystical person. I believe in the energy I receive from the universe, and from other people. And what I felt from Dr. Belfor was sincerity and authenticity, mixed with a spark of humble genius.
My logic said – don’t go down another path with another doctor, you’ll just be disappointed, again. My heart and my soul said – you can trust this man, he is a true healer.
I decided to listen to my heart.
In Spring of 2019, Dr. Belfor fit me for a homeoblock device and a POD device, gave me special tape--to tape my mouth at night and encouraged me to relearn how to breathe through my nose, and he taught me some simple daily breathing exercises.
Then he sent me on my merry way. The whole thing was so strange. I was skeptical, but I trusted the energy. I was open.
Plus: what did I have to lose?
I had moved to Toronto in January 2020. Toronto is even colder and more environmentally challenging than New York, so I was sure that my next sinus infection was just around the corner. I steeled my heart against what I presumed would be another disappointment.
But then…nothing! The weeks passed. February…March…Holy Smokes! I made it through the winter! A year passed. No sinus infection.
During that time, perhaps unsurprisingly, but still astounding to me (given my history), I gradually noted improvements to my sleep. Previously, I’d been getting up 3 times per night to urinate. By Spring 2020, I found I was sleeping through the night. Where previously, I was waking up feeling groggy, desperate for my coffee, I happily realized at some point that I just woke up feeling rested.
After about 18 months of therapy, Dr. Belfor said I could stop wearing the appliances at night. I still put it in every fourth night or so, just for good measure. After two years, Dr. Belfor repeated my high-resolution pulse oximetry test, and my oxygen desaturation index had dropped from 18 per hour down to 0.
I know it’s not a formal sleep test, but I’m pretty happy with that.
I’m also happy to report that my story continues on a happy trajectory. It’s been three years now, and I haven’t had another sinus infection. Not one. I had one cold, but it only lasted 3 days, and it went away, just like a cold is supposed to.
For the first time in my adult life, I can say I truly feel normal.
I’m sleeping well, and I no longer feel like I have symptoms of anxiety or ADD, and I’m no longer taking meds for any of these problems.
To put it simply, my life has been transformed.
Sleep Apnea, for me, was not “typical” perse. My story didn’t fit neatly into a box. My journey taught me an important lesson about this disorder.
When you look inside the machine that’s known as Sleep Apnea, you’ll find there are a lot of moving parts in there. The sheer complexity of it means that there is never going to be a simple solution that works for everybody.
You always have to take it apart, to get to the source, if you can. There may be more than one solution. There may be more than one thing you can try.
For me, personally, the solution had to do with changing the function and position of specific bones in my skull, while I relearned how to breathe through my nose, and my tongue relearned how to function.
My name is Kate.
And this has been my story…of Empowerment.
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20:36 Cue Majestic Theme Music
20:52 Dave & Ellen Dish about Kate’s Story
Dave: Welcome back…to Empowered Sleep Apnea! I’m Dave McCarty, and I’m here with Dr. Ellen Stothard…
Ellen: Hello, Dave! Welcome back to The Bunker!
Dave: Yeah! The Empowered Sleep Apnea HUNKER DOWN BUNKER!
Ellen: Yes.
Dave: So we’re talking today about a really…kind of a cool case!
21:11 Let’s Talk About Science and the Danger of Innovation
Ellen: Well, I think it’s really interesting to me, as a researcher…this is so…different…it’s so…out there…we’re not being given the data…given the information…and being able to collate it all together and understand it…it’s something that people are bringing to us, with this…anecdotal evidence of revolutionary change to their life…
Dave (laughs): Right? Look what happened!
Ellen: Absolutely! And…how do we create a path forward to be able to use that to do the most good for people?
Dave: Yeah.
Ellen: Understand if it can only help only that person, or a certain type of person…
Dave: …Yes…
Ellen: …or the population more broadly.
Dave: There are dangers with new innovations, and the lens through which you view the world kinda changes where you sense the danger…you know?...I want to introduce that concept and see what you think…
Ellen: I totally agree with that. The way we’re trained as researchers is…these are your red flags…this is how you know what’s good science and what’s bad science…and so you have some pretty hard-and-fast rules to look at: How big is the study/how small is the study? Did they do the statistics? Did they control for the variables? Did they have a random sample? All those things like that, that help us to believe that the information that we’re getting from a study is not due to chance, really.
Dave: Right, right.
Ellen: So: that’s what we’re trying to determine…is THIS an intentional thing, or is it due to chance?
Dave: Yeah! And this is the standard of the medical establishment, is that, you know,
Hey, if you’re going to say something treats a disease, then you gotta show me the data that it actually does what you say it does!
22:42 The Language and Culture of Silos
And then everybody gets ready to view the next big randomized controlled trial. What’s interesting is that these different fields have developed in parallel…in sort of parallel siloes…you know?...in the language of our last episode.
If you give an orthodontist a problem that involves spacing of bone and teeth, and things like that…meaning basically you assign them an engineering problem, they’re going to get to work!
And sometimes, these innovations that come up in the field are just so outrageous…but sometimes, they work!
Ellen: Mmm-hmmm. MmmHm.
Dave: …and one of the reasons I wanted to feature Kate’s story on this program is that it involves a particular type of epigenetic orthodonture—and that word [“epigenetic”] is kind of loaded these days…but it involves what I would actually consider to be true epigenetic orthodonture, and the science behind it is just fascinating…and what they’re doing is truly…kind of interesting.
And we don’t know kind of…how many people will be cured by this yet! We have no idea!
But what we do know is that as an engineering solution to this part of the problem--which is the “cranio-facial respiratory complex”—the bony elements…it’s super-cool!
Ellen: Yeah! So…a couple things I think of in this scenario, and things that you say that bring it up to me…is everybody’s got their certain tools, right? Like: a plumber has a certain set of tools…and a roofer has a totally different set of tools…
…so what I heard a lot in Kate’s story was everybody brought their own toolbelt…but they didn’t think about what tools could be in other toolbelts…you know that could be…that could be treating, or could be relevant…so everybody just kinda had their goggles on, and they saw, you know…this thing’s flowing, it must be a plumbing thing…
Dave: Yeah, right right right! And the toolbelt is aimed at a LABEL, right? She was going through the system…her behavioral problems got her a LABEL, and landed her in that silo, and then…what else? She never actually saw a sleep doctor!
Ellen: No! And that’s the thing that’s amazing to me, because the first thing I hear is SLEEP, but that’s because of my experience…
Dave: Yeah! And so all of us are like, coughing down our sleeves going “Well, she shoulda had a sleep study!” But, you know…this is a thin, fit, absolutely gorgeous young woman, and according to Dr. Belfor—whom I actually spoke to about this case, because the two of us wrote it up together, because I thought it was such a good one—her airway was perfect!
25:19 Sleep Apnea with a “Perfect” Airway
Ellen: Oh really?
Dave: To look in her airway it was WIDE OPEN…it was not FLOPPY AIRWAY! Absolutely…if we want to take a polar opposite to what that original Pickwickian Syndrome was like…this is…this is nowhere on the same screen, you know?
Ellen: It doesn’t have the classic signs and symptoms of Sleep Apnea.
Dave: It’s completely different!
Ellen: She’s not snorting herself awake at night…she’s not…you know…all that sort of stuff that we would, the people would be like “Oh yeah, go right to the sleep doctor!” She’s not even complaining about her sleep necessarily.
Dave: Right! The sleep was, you know, an afterthought…wasn’t it?
Ellen: MmmHmmm. It was the headaches. The daytime symptoms!
Dave: Headaches, yeah…and “Yeah, I can’t sleep at night, and, oh, by the way, I’m having trouble staying awake during the day,” and that gets its own LABEL, so people stop THINKING about it, when the LABEL goes on…
Ellen: Yup.
Dave: So that’s the real problem with reductionist, LABEL-based medicine…and you know, it’s hard not to be there, you know?
Ellen: Mmm Hmmm.
Dave: Because…on the one hand…you have this problem, and you gotta go in, and you gotta get seen for it, and there’s certain things you gotta get done, and you’ve only got so much time…and so I feel that…tension…in fact, the whole time I was practicing, I felt that tension.
Ellen: Yeah, and it’s hard to not get negative about it…and say “Somebody missed something…” or “This is a problem…” because it’s not…it’s not necessarily anyone’s fault, but it’s also not…it shouldn’t be—and that’s why we’re here—it shouldn’t be the responsibility of the patient to know…what they don’t know!
Dave: Yeah! Yeah, yeah. So this brings us back…for me anyway, it always brings us back to EMPOWERMENT…and what could Kate have known?...and…when did she learn?
And I think one of the things that kind of “flipped a switch” in her brain…was the fact…”Oh this could be an airway problem, even if I’m not that classic Pickwickian Syndrome, you know?
Because: remember…Sleep Apnea is sort of a construct…
ANNOUNCER: A construct that came to life in 1966, when French epileptologist Dr. Henri Gastaut used a new-fangled test called a POLYSOMNOGRAM to study the sleep of a patient with snoring, obesity, and daytime sleepiness…in other words…Pickwickian Syndrome.
Dave: …and obviously…that’s a LENS…but that lens doesn’t apply to everybody.
Ellen: …and it’s tough…it’s tough when you don’t have the specialists looking at it, right? When you have everyone who can see a flavor of something else, appearing in the disease that she’s experiencing.
It’s going to get confusing for clinicians who are different, and it’s going to get confusing for the patient as well.
28:04 The Harms of Siloed Thinking
Dave: I think one of the things that I’ve seen happen—and it’s hard to explain this phenomenon, but you get sort of stuck inside your silo. And you learn, you know, there’s one good way to treat Sleep Apnea and that’s CPAP, ‘cause that’s where the data is…and so you adopt this attitude that your patients can feel…
…and so if your patients aren’t doing well on CPAP and they’re like: “Well, what about this other stuff?”
And the tendency is to be like: “Ah, yeah, there’s no data for that!” You know: “I practice evidence-based medicine.”
And so you get into this sort of a…a friction. And the patient, in that scenario, feels shamed and discarded…because they’re asking: “Are there other possibilities?”
And if we stay in our silo and we don’t understand what’s happening out there, we can’t really give good guidance…so we can’t really say: “Oh, yes! This is the greatest thing ever!” you know? …and… “Everyone should do this!”
But: for someone who’s struggling…who has craniofacial issues…maybe if they’re an early adopter…maybe this IS something they would want to do…you know what I mean?
Ellen: Yeah, I think that’s the key, that’s really interesting is we come back to the Reasons to Treat, right?
Dave: Yes! Five Reasons to Treat! Yes, thank you! (laughs)
Ellen: This is exactly—you’re saying IF they have THIS…and they’re feeling THIS WAY…this is again wondering…WHY ARE THEY GETTING TREATED?...
Dave: Right…
Ellen: So, having the conversation, knowing that this is what they should ask about…”Why am I actually on this treatment?....Is it just to get my number down?...Or is it something else?”
The funny part is: I actually had a conversation with a friend of a friend this weekend, and she was like: “Oh, yeah, they gave me that machine…and they said my numbers were going down, but I didn’t feel like I was sleeping better…”
And I felt my Empowered Sleep Apnea personality come out when I was talking to her, and I was like: “That must have been really difficult for you…if they didn’t explain to you…”
because she said…”You know,I just stopped using the machine…you know when I go back to the lower altitude where I used to live, I don’t NEED the machine…but when I’m up here, I NEED the machine…and I just can’t get used to it…I move around a lot, and I don’t feel comfortable!” and all this stuff… “but my stuff was so low, my numbers were so low, I thought it was fine.”
Dave: yeah, yeah.
Ellen: It’s so interesting to take those details from those people, and see it through our lens, and be able to have a conversation with her like: “Well, did anyone tell you WHY you were doing this?”
And so for our scenario here, she didn’t know WHY?...she just knew she needed to feel better… but, she couldn’t drive that conversation…
Dave: …and people were seeing it through their own lenses…and, you know, bless their hearts! We’re all busy…you know?...we are all busy, and you know, you’re an ENT surgeon, you have your way of going through things, and someone’s got chronic sinusitis…
…and by the way, chronic sinusitis with polyposis is one of the most recalcitrant diseases we’ve got, and it’s just…it’s a terrible burden…and so the trajectory that was expected for her was really sort of dim, and it was another reason why this story sort of grabbed me by the shorthairs and made me pay attention—having that sort of turnaround is really unusual! You know?
31:06 The Link Between Sleep Apnea and Chronic Sinusitis
Ellen: Yeah, so can you talk a little bit more about that, because that sounded pretty medical…
Dave: So…it’s complicated, is the thing. One of the reasons that chronic sinusitis can happen is that the “os”—the opening of the maxillary sinus, which drains into the nasopharyngeal space—that can get blocked…OK?...and the reason it gets blocked is…for lots of reasons, and usually it’s mucosal swelling of some kind.
When people have obstructive sleep apnea events, when they are sucking in against a semi-closed airway, what happens to contents of the stomach is they tend to get sucked “NORTH”…and that tends to put this wash of toxic substances over those delicate structures…and it makes them constantly irritable….OK?...so it’s a way that Sleep Apnea itself can DRIVE sinusitis…
Ellen: Oh, that’s interesting…
Dave: You know, just by reducing upper airway resistance, whatever you want to call that, reducing the difficulty drawing air in, because of limited flow…you can create a beneficial endpoint with respect to sinusitis…it’s one of the COMORBIDITIES that tends to improve when you treat Sleep Apnea…OK?...
32:21 Not All Oral Appliances Are The Same
…the other thing about this process…what Ted Belfor is calling Morphogenic Functional Appliance Therapy…is that this form of oral appliance therapy is very different…it’s not the same…like, they’re not all the same…
…and some of them function by putting static forces kinda laterally on the palate, which ultimately can make the upper jaw a little bit wider, if you will, because it tips the palate bones away, almost like an umbrella opening up…
Ellen: …so you’re using a lot of hand-gestures here…I feel like this is…this is a thing to explain…you know…to be able to picture it…it’s the key to it…
…so, if we picture the top of our mouth…we’ve got some bones in there…and some people have narrower faces, and some people have wider faces, just like some people have narrower necks, wider necks, longer necks, shorter necks…
…all of this physiology is playing into the disease status…the physiological functioning…healthily or otherwise, of all of the upper airways that are connected…
Dave: Right! Remember the moving parts of obstructive sleep apnea: the narrower the upper jaw…you know?...the less room there is for the tongue…and the tongue has to go somewhere…and if it can’t go up there, then it’s going to sit backwards and be part of the problem.
Ellen: So…one way we have of solving this “engineering problem” is forcing air through it, to keep the back open…
Dave: That’s right.
Ellen: But that doesn’t change…if you don’t have enough space in there, right?
Dave: That’s right, that’s right.
Ellen: So, if we’re looking at someone who doesn’t have enough space in there to begin with, another potential strategy, if we’re trying to fix it, is to create more space…
Dave: That’s right.
33:54 Evidence Based Medicine, Case Reports, and Medical Harm
Ellen: And we don’t have…what we’re saying to come back all the way around to the beginning…is what we’re saying is that we don’t have a ton of evidence to show that this can be done systematically in people…
Dave: …and how it can be done safely…and what the results are expected to be…
Ellen: …but there are some really really outstanding cases where it has improved in a situation, like chronic sinusitis, which we wouldn’t expect to see such a “easy, quick, simple, straightforward” turnaround…
Dave: …yeah, yeah. And, by the way, for listeners, this is a case…Kate’s Case of the Endless Sinusitis is actually one that we are submitting as a Case Report, and the manuscript for that will be available on the website.
…so I was explaining that there’s different kinds of oral appliances and they’re not all the same…and…some of them work by putting static forces laterally, on the upper jaw, the maxillary jaw…and it opens that structure up like an umbrella…and that can be beneficial for some people because opening up that space can do some good…but those kinda appliances can also do harm, if they’re advanced too far…because you can push the teeth out too far, and you can cause some trauma that way…
…so they’re things that need to be done with a lot of supervision…
Ellen: Absolutely. So, just to put that in context, are there other treatments for Sleep Apnea or other diseases that you can think of, off the top of your head, that are similar to that?...where they have great potential if they’re used in that sweet spot?
Dave: Well, yeah…sure…I would say: anything that you do as an intervention medically that requires a prescription has the possibility of causing harm…
…you know…CPAP causes problems…medications we prescribe cause problems…so it’s something that ideally should be done under the supervision of someone who’s familiar with that treatment, and who cares about the patient, not selling the product…you know?
Ellen: So that’s not a totally crazy thing, to have something like this, that could have—in the sweet spot—really good benefits…
Dave: Yeah!
35:58 Uniting Silos with a Common Language
Dave: This is why I’m trying to open the conversation…these siloes of thought are so different that they’re not actually speaking to one another…and so, as a result, there’s a lot of inter-silo hostility, sometimes, and the patient has to navigate all of that…
…so, what we’re trying to do with the Empowered Sleep Apnea project is bring the conversation always back to the patient…you know, a patient-centered approach means that the patient understands The Five Reasons to Treat, before engaging in anything…and the thoughtful follow up is gonna be based on those Five Reasons to Treat…we create the goals, and then we figure out if we’re getting the patient there…
…and meanwhile, we understand that ours isn’t the only silo…you know?...and we’ve gotta be thinking about how to get the patient through if they happen to do poorly with the tools that we’re used to…
Ellen: Somehow I have this image of, like, a farm…you know, everytime you talk about the silos, I think about where I’m from in Ohio, there’s lots of silos on farms and things like that, and some are filled with grain, and some are filled with corn, and some are filled with all kinds of different things…but they’re all on the same piece of land, and…I get this image that we’re somehow THE FARMERS…in here…bringing it all together…
Dave: I like that! I like that! Or, maybe: THE TENDERS…I really…I like the concept of the Blue Balloon, because it does feel sort of like…it frees you a little bit, of some of those Siloed Thinking patterns…
Ellen: Well, it’s a totally different view, when you go up there…
Dave: It is…
Ellen: I mean…you’ve climbed “Fourteeners”, right?...
Dave: …I’ve been on one…
Ellen: They’re not easy to get to, and they’re not easy to get to the top…it’s a lot of work…
Dave: Yep.
Ellen: …but the view…
Dave: …that’s it!...
Ellen: A “Fourteener” in Colorado is a Fourteen-Thousand-Foot Mountain!...You climb up…
Dave: …and it’s three-sixty, baby!...
Ellen: …you’re above everything!...
Dave: …yeah…
Ellen: …and everything looks totally different up there…
Dave: …it is a complete change of perspective…
37:47 Craniofacial Development, Epigenetics, and Epigenetic Orthodonture
Dave: …so I wanted to do a bit of a walkthrough of what I understand about the appliances that Kate is using…it’s a fascinating idea…and basically what it does is it makes use of the normal signaling that is built into our structures, that tell the head and jaws how to develop.
So, as we develop, and as we’re growing and stuff…the shape of the upper jaw, and the shape of our airway, and the shape of our lower jaw, is basically dependent on functional activities…
Ellen: …functional activities…
Dave: …Right? So as we suck on Mom’s breast and get milk…that massaging of the tongue against the roof of the mouth is actually what spreads the palate…
…as we’re breathing through our nose…that airflow through the nose…the act of nasal breathing during development…is what develops the midface and the sinuses…
…so if we don’t breathe through our noses, that part of our face doesn’t develop properly…isn’t that crazy?
Ellen: The thing that I read this one time is that the CHEWING that we do…because we have such soft food now…and we don’t chew for the same duration of time…that’s another contributor to this under-development of the palate and the nasal airspace…
Dave: That is correct! And you know why? You know where the signaling is? This is what I learned from this journey…as we bite together…as there is tooth-to-tooth contact…that produces functional forces on the periodontal ligament, which then goes up and translates to epigenetic forces in the suture lines…
…OK?...so our heads know how to develop, because all of this stuff is connected…like the jaw is connected to the temporal bone…
…so all of that stuff is connected. And…when we use our teeth in a certain way…it makes our heads develop in a certain way…
…so that’s the basic idea of development…
…now, when you take all of that, and you try to reverse-engineer it…you realize that you can create these little physical therapy devices that amplify these normal movements…so there is a device that’s called a Homeoblock…which is something that you wear at night…and it’s got these little wire extenders…that, when you normally move your tongue, and you swallow, and the tongue does what it does…it sends a little pulse of a signal to the periodontal ligament—not actually pushing on the teeth…it’s actually doing something to stimulate the roof of the mouth, basically…
…and that sends singals up in a “lopsided” way, to create development where previously there wasn’t…
…and I’m not making the claim that the bone is actually growing and morphing…what it’s doing is that if you think of the skull as kind of this very complicated jigsaw puzzle…it’s kind of moving the jigsaw pieces in relation to each other, and strengthening certain attachments, and weaking…you know…whatever…
…and in so doing, it can actually realign the position of the jaw. So: the before and after pictures on this story are pretty fascinating…there’s a technique of doing a pre- and post- CT scan, and then you can have them mathematically compared and see where the bone moved…and it’s truly fascinating…there is bony changes in all of the right places…
…and what ended up happening in Kate’s case is it just sort of moved her stuff around just enough where she felt like she was breathing easily through her nose again…she stopped breathing through her mouth…obviously, whatever was the Sleep Apnea condition—which was never fully confirmed, but—whatever was there…completely went away…and she ended up symptom free.
…and I just thought that was a fascinating journey for what was essentially a really cool physical therapy program…
Ellen: Oh, yeah! I mean it’s amazing to think that we have come to a place in our knowledge that we can understand how these disparate physical spaces connect and talk to each other…so we can use physical therapy and we can use the normal functioning of the body to try to improve…you know…if you think about development…how much is there that goes right, that some of it may…just go a little bit wrong sometimes, and how can we leverage those processes to try to fix things so that they function well and support good physiology and healthy living…
Dave: MmmHmm.
42:19 Splinting Vs. Curing
Ellen: But the thing that’s really interesting to me is what you were explaining about how it goes about doing this because there are other oral appliance devices, right, so we think about…if we go back all the way, everybody’s familiar with the CPAP.
Dave: Yup.
Ellen: It goes…on your nose, on your mouth, pushes air through your airway…using that nasal airspace or oronasal airspace to keep the airway patent…
…but you also have the oral appliances that we’ve talked about…that tend to try to bring the jaw forward…
Dave: Right, also creating more room, right? Creating more room for the tongue to exist.
Ellen: …but they’re not actually effecting a change, within. The goal is not to effect a change within the physiology…
Dave: Right? Oh I see what you’re saying. It’s more of a splint!
Ellen: Yes.
Dave: Right? It’s splinting the problem, and, you know…that’s a cool idea! And-and…wouldn’t it be cool if we could actually do something where the splint wasn’t needed…how cool is that?
43:15 Epigenetic Orthodontic
Ellen: Yes. And so, my question kind of is: How is this different from…because you called it “Epigenetic Orthodontics.”
Dave: Yes.
Ellen: Some of this…some part of this world is called Epigenetic Orthodontics. So…that’s a big word, for a lot of people…two big words…
Dave: Right? (laughs)
Ellen: So…Epigenetic…what does that mean in this scenario?
Dave: So…orthodonture…we’ll start with that one, because that’s easy. Everyone’s used to Orthodonture …you move teeth to make ‘em straight.
Ellen: MmmHmm
Dave: And one of the things that these pioneers are figuring out is that part of the reason the teeth are crooked to begin with is because the skull has grown kind of in a weird way…and there is a different way of looking at the skull where it becomes clearer and clearer that not everybody’s face is symmetric…and that dissymmetry is sometimes a clue.
OK? So the terminology that’s being used is “Craniofacial Dystrophy”—that’s the buzz-word that’s being used to describe that phenomenon…when the skull develops in a slightly lopsided way…and, sometimes there’s problems with it…
…people get temporomandibular joint dysfunction because of it, because the jaw sits funny…there’s breathing disorders that are problematic…
…so…all of that kinda runs with it…
Epigenetic refers to a…kind of a new-ish concept…it’s not really new…but: the idea that…we’re not just all GENES, you know…so, for example, if you were to ask a bunch of people “Well, why do I have bucked teeth?” …it’s like: “Well, it probably…it runs in your family.” Somehow it’s pre-ordained, that it’s genetic.
And…the thought process about many of these issues is that we’re born with a DNA blueprint, and a set of supplies that shows up onsite…and then, what happens during development is…different things…and so, if we’re breathing through our mouths instead of through our nose…different genetic growth centers are going to be stimulated, because the lower jaw’s not gonna grow right, and the upper jaw’s gonna be too narrow…
…so…all of these things are called Epigenetics…it’s actually activation of genes at the time of service…you know?...so the concept of Epigenetic Orthodonture is we’re using the same ideas about how things develop in the first place…and we’re trying to send signals that amplify the ones we want to create growth and movement in the right direction…
Ellen: So, that’s really interesting, because it makes me think of the whole Nature vs Nurture thing…so Nature arrives and Nurture takes over…and it can have a difference in the way it plays out in your life…and so we’re using that knowledge that we have, to try to improve the physiology and actually quote unquote “cure” the situation, as opposed to put on something like a splint, right?
Dave: Right! So, it’s a search for a different solution…it’s not treating the disease anymore, it’s sort of using the disease as a starting point, and then trying to reverse-engineer your way out of it…
Ellen: Absolutely…
Dave: …and right now, there’s very little data for it…all there is, is sort of, the engineering concepts behind it…
46:22 Are Traditional Orthodontics Doing Harm?
Ellen: …so, orthodontics is nothing new…we do that all the time…and…on young kids…
Dave: So, yeah, they’ve been moving structures around for as long as they’ve had wires and stuff…
Ellen: Exactly! And we don’t necessarily know the downstream impacts of that…do we?
Dave: You know, there are increasing concerns in the dental community that some of the historical practices of…you know…you straighten the teeth, and how do you put straighter teeth in a crowded mouth?...well, you take four of ‘em out!
…and so that process…which has historically been done on many people…what it results in is nice straight teeth, in a much smaller oral vault…and many of those folks go on to get airway problems…
47:03 What is Science? What is Research?
Ellen: So I think it’s really interesting to kind of acknowledge here, from the research perspective on my side…is that: Research is not…DONE….once we’ve done it once…
Dave: Right?
Ellen: …and found an answer, right?
Dave: …science is not “repeating what we know.”
Ellen: One study does not a theory make…you need to have a plethora of evidence…we all want to have multiple repeatable studies that show This Is What’s Happening! And: This Is Why It’s Happening…and: we’ve thought about all the things down the road, that we know it’s gonna be healthy and happy and great for everybody.
That’s, you know, the simplified version of it.
Dave: Right, right. That’s when you start promoting it, as the cure, when you know what you’re talking about…
Ellen: Exactly.
Dave: Right now, we’re following a lead.
Ellen: Exactly. How do we get from an N of 1 to “The Cure” if we don’t have people who are things like Early Adopters, or other people who are willing to participate in the science…to see if…
Dave: That’s exactly right.
Ellen: We can do, obviously, lots of animal models and other…statistical modeling…and things like that, but we do need to go through the process of testing these types of things on humans, to make sure that it’s…working!
Dave: Yeah, yeah. Or: the way these things usually go when they begin with an engineering type innovation is you start with case reports, and then you have case series, and then you start recruiting for trials. And until then, it’s really difficult for me to jump on any advertising bandwagon…but I also think it’s important for people to hear…I dunno…for people to hear somebody say…science is not just repeating what somebody else wrote down, science is also recognizing legitimate natural signals and having the courage and the wisdom to follow them, and to deal with that information safely.
Ellen: …something from my world that this really resonates with is: I really get discouraged when people say “Oh! There’s not enough evidence, there’s not enough evidence!” and they kind of wave their hands and walk away.
Dave: MmmHmm. That’s siloed thinking, isn’t it?
Ellen: Yeah! That’s a cop-out, to me. You’re just like: “I don’t need to go any farther than saying I DON’T HAVE ENOUGH EVIDENCE, I CAN’T MAKE A DECISION.”
True research, true scientific thought…is someone who’s able to say: “This is the evidence I have right now…this is how I put it in context…with the information that we have, demonstrated by other evidence…and let’s make a plan to move forward.”
You know, it’s similar to the…it’s similar to the Reasons to Treat…you’re gonna treat terminal cancer patients very differently than you’re gonna treat mild Sleep Apnea patients…and the information and the context is important…
…and so that’s why we’re having these really nuanced discussions about these different types of oral devices…because you and me both are trying to navigate our way through…
50:07 EMPOWERMENT Equips Patients to Contend with Profiteers
Ellen: …how do we go about understanding whether these are helping people, whether they should be pursued, or whether they should not?
Dave: …and how do we protect the average bystander against sort of a profiteering practice who just wants to put the label on you, get you treated with their device, and get you out?
Ellen: Because we can’t pretend that everybody out there has the purist of intentions, and just wants to make the world a better place…
Dave: You know…I want to avoid casting that stone…I don’t think it’s about intentions or purity or anything else…I think that the profiteering viewpoint is not necessarily bad…it just…there is a tension with a requirement for patient safety…
…we need to recognize that making money is what makes the world go around…and having a legitimate business plan is what’s going to be able to make these treatments go out and have a footing in the community…
…but, that being said, the average person walking between those silos who’s like “Hey, I’m a little sleepy—hey there’s a sign on the door, I’ll walk in here…” you know…who KNOWS what’s going on at that point?
…and that person, ideally, should have a good visit to the Five Finger Approach Mountain, to understand that it’s not all just the airway, and then than person—before they get slapped with a label and a treatment—should have a really really LONG Coffee-Hut discussion! “Is this the right thing for me? What are my goals? What type/What flavor of Sleep Apnea do I have? What MOVING PARTS are involved? You know?
51:39 The Tension between Researchers and Profiteers
Ellen: For me, it’s really interesting as a researcher, because we have this whole…It’s a calling…right? We do it because we’re passionate about it…
Dave: …you’re TRUTH-SEEKERS…
Ellen: Yes! And we’re seeking the truth…and you’re very right to acknowledge the fact that we live in a society that you need to keep the lights on for your business. You need to be able to pay the salaries…if you want to continue to treat people, you’ve gotta keep the lights on, basically, is the easy way to say it! And that’s a part of this. And so: people should be compensated appropriately for the value that they bring and the care that they do, but we should beware that there are people out there who don’t have the best intentions in mind. How do we help people navigate that?
52:19 The Individualized Challenge of SLEEP and the Quest for Wholeness
Dave: Yeah, yeah. Well, I think what we have to bring it all back to is the fact that this is ultimately about a person. And that person is the patient. So, ultimately that person needs to know their way around so that they can participate as an active navigator in this journey. There is really no other way to do it.
Because...a lot of the information is hidden from the provider, because only the patient knows it. And they won’t know to disclose it unless they’re given a structure for it. Right?
Ellen: I think that that is so key…that’s so key…there’s no way the patient would know to say “Actually, I HAVE been feeling sleepy!” to their person who’s looking at their infections in their nose!
Dave: Right.
Ellen: Or their headaches!
Dave: Right.
Ellen: Those don’t necessarily go hand-in-hand!
Dave: They…they don’t.
Ellen: The problem with SLEEP—and the beauty of SLEEP—is that it’s literally in everything…it’s attached to everything…we know that there’s not a single thing that is not affected by your sleep!
Dave: It’s incredible…this is literally the rabbit hole that lured me in to this specialty, is that…everywhere I looked, if you weren’t getting good sleep, it was making it worse…and I thought Oh my goodness…what have I been missing all this time?
…and it’s really been the quest for wholeness…you know?...because having whole sleep makes us feel whole as individuals, as humans, you know?
Ellen: …MmmHmm. Well, and that’s really why we’re here…because…we’re so passionate..as, going back to the story I was telling before, I kept talking about the Empowered Sleep Apnea mindset, and then five minutes later, ten minutes later, I was like: “Oh, I’m dominating this conversation!” because I love…I’m so passionate about telling people that there’s better things out there for you, if your sleep’s not good…you shouldn’t just…toss that machine aside because you don’t know what’s going on, and you don’t feel EMPOWERED to make an informed decision.
Dave: Yeah.
Ellen: So…that’s why we’re here…that’s why we’re talking about all this stuff, is…coming back to the patient!
54:19 The Gauntlet Called Reddit
Dave: Yeah. I’ve been lurking on Reddit.
Ellen: Oh, yeah?
Dave: Recently.
Ellen: What kind of Reddit?
Dave: Well, there’s a Sleep Apnea page on Reddit. And a friend of mine who is way more technologically developed than I recommended it.
And: what I’ve been noticing is that there are so many people who are hurting, ‘cause they just don’t know what’s going on…
Ellen: MmmHmmm
Dave: …I can only LURK for so long, because it breaks my heart…and I’ve left a few…kind responses, and said Hey, why don’t you check out the Website and learn about the Five Reasons to Treat, you know…check out the PODCAST—it’ll teach you some stuff that you can…really fit you for your journey, you know?
Ellen: Yeah. That’s amazing, Dave.
Dave: I’m realizing that there are so many people reaching out…so, um…listeners, if this program appeals to you, please consider leaving a review, ‘cause it’ll help us get found by other seekers who are trying to find valuable information that’ll make ‘em feel EMPOWERED and give ‘em a sense of agency within this complex diagnosis.
55: 22 Let’s Hear It For Collaboration!
Ellen: Well…not just this diagnosis either…because…you remember from our book signing…the one person that really really stuck out to me was…he stood up and he said:
“You know, this book’s not just about sleep! It’s about how to drive ANY healthcare journey…how to communicate with ANY patient…it has to be done by YOU…YOU’RE the only one who’s in charge!”
Dave: …in other words: it HAS to be COLLABORATIVE. And you know…the word “collaboration” has been on my mind constantly…because…this is not just a collaboration between provider and patient…this is an understanding that…this needs to be a collaborative effort between all the SILOS, too. Because when we’re not communicating with one another, it’s the patient who gets harmed.
Ellen: MmmHmm. MmmHmm.
Dave: And that kind of collaboration is very difficult to achieve…because…SILOS are SILOS because they don’t talk to each other…you know?...so how does one achieve that? Well, I dunno. Maybe a Big Blue Balloon will help.
Dave and Ellen: (laugh)
Ellen: Yes, absolutely. We can only try, right?
Dave: yeah.
Ellen: We can only try.
56:29 The Heartbreak of Medical Harm and The Promise of Collaborative Empowerment
Ellen: Well, we’ve talked a lot about the oral appliance aspect, in different flavors…we were looking at an article before…that we were kind of talking about…some of the harms that may have been caused by these devices…when they’re…maybe not used…correctly…
Dave: …it’s heartbreaking when that happens…
Ellen: Absolutely…I think it’s…it’s really interesting…there are some other articles that you and I have talked about that have come out recently of people who…um…people who are just sharing information about their personal experiences with Sleep Apnea care not going…to plan. Right? Not resolving their symptoms. And I think…we had a really interesting discussion about how we can try to bring everybody in…right?...and we can…
…instead of looking at…reading these things and saying “Oh they did THAT wrong and they did THAT wrong!”…we can, hopefully, look at these examples and learn how we can do things right…
Dave: Yeah…and also just sort of understanding that within every SILO, people get mistreated. And the occurrence of harm is not representation of malicious intent or, even necessarily irresponsibility…because harm happens in all medical fields…you know…the issue is that…I think, in order to learn from each other…we have to learn how it is that SILOS become deaf to one another…and then we have to learn how we can communicate with one another…
…and the one thing that I know always seems to work is empathy and respect for the journey…and so, you know, um…part of the Empowered Sleep Apnea project goal is to create a language that EVERYBODY in EVERY SILO can speak, and understand…patients AND providers…you know…it UNITES the entire playing field, if you will, and it unites it in favor of the patient.
So: if everybody knows about the FIVE REASONS TO TREAT and the COFFEE HUT DISCUSSION and the need to set goals, and the understanding there’s Many Ways Across The River…suddenly, these isolated problems where somebody gets in a SILO and they get mistreated, it seems like it’s gonna be less likely…because people know there’s gonna be fluidity…
Ellen: …and—recognizing that DOCTORS are humans, too…RESEARCHERS are humans too…and PATIENTS are humans too!
…having the COFFEE SHOP (sic) conversation…realizing and remembering that it IS a conversation, a back-and-forth…
Dave: A back and forth, yes!
Ellen: …collaborative…
Dave: …collaborative!...
Ellen: …back-and-forth…that’s the most important thing, I think, to emphasize here…is that…we’re presenting a lot of different…options…we’re presenting a lot of different trajectories…but…not every ONE fits everyone!
Dave: Yeah!
Ellen: Right?
Dave: …and ultimately, it’s going to be the patient driving the boat, really…navigating…and the way I kind of see the Provider-Patient-Partnership…is it really should be…not sort of a…you know…leading by the nose…it should be more an arm over the shoulder, and helping you see the entire room, and then giving you guidance about what seems to be a good idea and where to go…
Ellen: …because thinking of my experiences, when I tore my ACL…I was just like: “Tell me what to do!...You’re the doctor…tell me what to do!, you’re the expert!”
Dave: Sometimes, that’s what you want…with an injury like that, you’re like: “I’m in your hands, Man!” literally. "Just do your job!"
Ellen: Yeah! And you go to your surgeon and they take care of you…but in other scenarios, so people have that experience…is what I’m trying to say…people have that experience where they’ve been in the situation where the doctor’s the expert, you know…CARDIOLOGIST or whatever…something serious like that…and you just say TAKE CARE OF ME…and…but we don’t necessarily acknowledge that not every…disease…or every… condition…should be treated that way…
Dave: That’s right.
Ellen: …and kind of what we’re saying here is…Look at all these tools …we in Sleep Medicine should be more collaborative than that…
Dave: Yes. I agree with that. I agree with that. And I think we’re moving towards that…you know, there’s a lot of iner-, there’s a lot of institutional inertia, with any given treatment, there’s going to be a lot of…there’s a lot of dollars involved, and sponsorships, and people sitting on boards, and so there’s going to be some stone-throwing because there’s always a bit of profiteering mixed in…and you know it’s…it’s just the way it is…any organization gets big, like that.
So: change has to come gradually…and uh…understanding new ideas has to come gradually…
…but I’m hoping that the idea of a unifying language that helps everyone understand this complex disorder won’t be too big of a pill to swallow…
…we-we got our first great review…
Ellen: Oh, yeah?
Dave: Yeah, in CRANIO…in the journal CRANIO, we got a wonderful review…and in my view this is just proof that the language is working…you know…this is a dentist who really doesn’t know us at all…completely different SILO..it’s the Dental Establishment Silo…and he…perfectly understood the message…so, I found that compelling…
Ellen: Well, that’s the key, too…is we’re here to talk to other people, in a shared language…and to create this space where we’re all…
…we’re opening…we’re kind of…I don’t know…we’re not trying to air the dirty laundry but talking about HOW the inner workings of the process of GETTING TREATMENT and MANAGING TREATMENT works…is…it makes it more comfortable for people to understand where they are and where they need to go…
Dave: MmmHmm
Ellen: …because even just understanding that the Doctor’s Office is a business…that’s part of the problem…is that people…
Dave: …there’s a tension there, always…
Ellen: Exactly! And so if we can all come to the same place and acknowledge that…then we can move forward together…
Dave: Yes. Yes. And it’s hard to talk about a fractured system without people getting angry at each other…so…you know…we’ll stay in our Blue Balloon…we’ll try and help people see how we’re all connected…you know…that’s gonna be the goal of the Empowered Sleep Apnea project.
62:59 The Healer’s Instinct and its Spectrum
You know, there’s another part of Kate’s story that really struck me…you can hear that she’s sort of an intuitive person…and one of the things that guided her towards this particular treatment was her sense of…I dunno…what did she call it? Good vibrations?...
Ellen: …something like that…
Dave: …She got a good feeling from Dr. Belfor…what she basically told the story of is what it feels like to sorta be with a provider who’s listening to you. I know Ted, and he has very strong Healer’s instincts…
…you know…his profiteering instinct is enough to keep him in business, but it really never trumps his Healer’s instincts…and patients can feel that…
…so, understanding that these instincts are more (or less) developed…depending on your personality, and who you trained with…we have to help each other out…you know?...and help the ones that don’t really have a fully developed Healer’s instinct to understand that things happen outside their SILO, and people leave, and there’s HARM that’s happening…so we have to help those people advocate for themselves, you know?
Ellen: You know, when people come to me and say Hey, I wanna come to your clinic…like who would you recommend for me?
Dave: Hmmmmmmm.
Ellen: …looking at the Doctors, you know Who would you recommend for me? And it’s really interesting to me that I don’t always recommend the same person! Because…every clinician…provider..whatever layer they’re in…has a different strength…that needs a different personality…
Dave: Well…yeah, yeah…you’re right! You know, some folks are much more algorithmic, and they’re like You got the disease…BOOM BOOM BOOM…they get you out…and for some folks, that works GREAT! ‘Cause you really don’t want to go in there and have someone oozin’ all over you…you know?...it’s annoying to have somebody who’s Ohhh. Tell me about your feelings…I just want you to tell me-just give me my CPAP, I’m done! I don’t wanna be here!
…so, there’s a place for everyone…and it’s understanding that EVERYONE has value…you know?
Ellen: Yeah, and I think emphasizing that is keeping us in this Land of Not Throwing Rocks! There’s nothing wrong with that type of practicing as long as you’re taking the patient into consideration. And if they come in to you, and they’re a straightforward case…you know…if they’re a Home Run…100% DO THAT…
Dave: That’s right.
Ellen: But if there’s any issues, having this framework to lean back on and have a conversation with the shared language, so that patients can advocate in the case of any issues…I think that’s super-important…
Dave: I feel that too.
65:30 A Researcher Walks Into An N of 1 Situation…
Ellen: Yeah…it’s really interesting to me to have cases presented on here…to be…as a researcher…looking at these cases and having to fight that internal bit of…N of 1, it’s an N of 1…but it’s an exciting thing…and when you understand why it’s happening…how it’s happening…why the people targeted the treatment in this way…and you follow the whole progression of the case…it’s so crystal clear…
Dave: it’s a field-engineered solution, and it’s a cool one…and you know…thank God that she found this solution, because her life turned around.
Ellen: Absolutely. And if she hadn’t tried it, we would never know…
Dave: Yep. We’d never know.
66:10 What is Science?
Dave: (groans) What is "science"? What is "evidence-based"?
Ellen: I mean: evidence-based…that’s what I was kinda trying to say before…science…and evidence…is about taking…
Dave: …what you see, and…
Ellen: …understanding if it happened…by chance, or if it happened…
Dave: …if it was REAL…yeah…
Ellen: …by intention…
Dave: …yeah…that’s right…
Ellen: …statistically showing that it didn’t happen by chance…is really all science is…
Dave: Yeah.
Ellen: …and so, setting up your statistics appropriately is all about doing good science…
Dave: So…when the NASA Engineers threw that stuff onto the table and they say we’ve gotta put a square peg in a round hole, using nothing but THAT, rapidly. Right? Remember that scene from Apollo 13?
Ellen: MmmmHmmm.
Dave: So…those people were using scientific principles and engineering principles to solve a very real problem, with an N that was absolutely 1…and they will never do a randomized controlled trial that it worked…and they succeeded. And so, you know…it’s just a different viewpoint of the way to promote a medical treatment.
You know, on the one hand there’s an engineering problem of an airway that’s too small, and we’ve got these tools, and, hey…these tools are actually making things move…so, hey, do you feel better—do you feel better—do you feel better—DING! Yeah! You do! Ok, great, good job!
And then there’s this approach of…we label it…we create a treatment for it…and we design a giant trial…and that takes…years…and so there’s these two very different developmental pathways for something that could be a very legitimate…one is a field-engineer who’s working in real time…tweaking…counter-tweaking…and then, at the end of a decade, they can tell you what they did…but nothing’s been published, and that’s kind of where Dr. Belfor is right now…
Ellen: Well, the interesting thing about science is…it’s very reactionary…right? So…research has become very reactionary, because HARM has been done…in the past. And so…we always carry that with us…knowing that…we have to try to protect everyone at all times…because people can do bad things…
Dave: …and the treatments…and the treatments and the diagnostics can be part of the problem, as we learned from our friend Ignac Semmelweis…
Ellen: …you know we think of how we came about some of the knowledge that we have in our world right now…and it would be…disrespectful to the ways that we got it, to not use it…so we can’t throw out everything just because it doesn’t meet the randomized controlled trial gold-standard…we have to make sure…but we have to make sure that we don’t do harm going forward…so…
…I’m always going to be slightly skeptical of someone who’s tweaking and tinkering with people’s bodies…because it’s a high-risk, high-reward situation…you can do very…substantial harm…as we’ve seen in examples…but…we won’t get anywhere new without trying anything…
Dave: …if we don’t follow the signals…and try to understand the bright spots…we’re never gonna make progress…
Ellen: …and having those conversations honestly…with people who are not primarily scientifically-qualified researchers…and saying Hey, we’re just out here doing our best…we want to figure out new information for you…but we’re not…telepathic…we are not “all-knowing” …we can’t know what the outcome is gonna be, before we start…so, we have to have these signals…to follow up on…
Dave: …and really what we need to sorta be pushing for is a more equitable seat at the table that allows some of these field engineers to partner with academics, so that they can publish their work…and we can start looking into some of these promising new bright lights…so that some of this rock-throwing can stop.
70:05 Publishing The Signal
Ellen: That’s the coolest thing about the case study that you’ve done…is…you know a lot about Sleep Apnea…
Dave: Yeah…a little bit (laughs)
Ellen: (laughs) …more than the average…rock… (laughs)…and you know enough about patient care, that you can partner with someone who has the experience of the actual treatment that’s different from what the mainstream treatments are…and you can say Hey! I can compare these to the outcomes I would use on my patient…and I can communicate it in that way.
Dave: Well, and we can learn to speak the same language…and get these promising field-engineered viewpoints out there, so we can start a better conversation…and have that conversation be fueled by our desire to help the patient on their level…so: back to our patient-centered strategy, no matter what we’re doing…
Ellen: …absolutely…and being able to talk to patients as a researcher and as a clinician…having the same words to refer to the same things…will bring everybody to the table…
…which is CRUCIAL.
71:13 Cue Majestic Theme Music.
71:29 Outtro/Credits:
Announcer: Empowered Sleep Apnea: THE PODCAST is a production of Empowered Sleep Apnea, LLC. The opening sequence was written and performed by Kate Yeshurun and produced by Dave McCarty. The show was otherwise written and performed by David E McCarty MD, FAASM and Ellen Stothard PhD.
Stage lighting for today’s show is provided courtesy of Nikola Tessla’s fabulous invention, alternating current electricity. Promotional materials are created from an equal combination of trust and shared experience. Music, as always, was performed by 25% Fred.
Check us out on the interwebs at www.EmpoweredSleepApnea.com, where you can check out loads of fun stuff, including cartoons, links to all podcast episodes and specials, transcripts of the shows, Dave’s Notes, the official blog of Empowered Sleep Apnea, and, if you’re so inclined, links to purchase our Beautiful Blue Book, which is now available in Hardback as well as e-book editions.
If you enjoyed the program, please make sure go back and listen to Season One so you can get properly lovingly indoctrinated into the language of Empowerment, and please please please consider leaving a positive review on the podcast platform of your choice.
That’ll help other seekers find us.
Make sure you tune in next time, when we’ll take our Beautiful Blue Balloon all the way across—or should I say DOWN UNDER—to the other side of the planet, when we’ll hear from Sharon Moore, author of Sleep Wrecked Kids, as she shares with us her story of transformation…
…as always…I’d recommend against doing something else…
Coming up next…again as always…your Sleep Medicine Dad Joke.
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73:01 Sleep Medicine Dad Joke
Dad: Hey, you know, I’m pretty good at sleeping.
Not-Dad: Oh yeah?
Dad: Yeah, yeah, I’m pretty good at it.
Not-Dad: Yeah, well, how good are ya, Daddy-O?
Dad: Well, believe it or not, I’m so good, I can do it with my eyes closed. Yep. I know right? I know. With my eyes CLOSED!
Not-Dad: No foolin’? Hey, wow, yeah, I gotta admit, that’s pretty good, when you can do it like that!
73:31 End Program
