Sleep Apnea Squad: Sleep Apnea Treatment Options

Project Sleep Podcast
“Sleep Apnea Treatment Options”
(Sleep Apnea Squad Episode 3)

Emma Cooksey is the Sleep Apnea Program Manager at Project Sleep and host of the Sleep Apnea Squad podcast series. She was diagnosed with obstructive sleep apnea at the age of 30, after more than a decade of unexplained health problems. Once diagnosed, she felt alone while navigating life with sleep apnea and adjusting to CPAP therapy. In 2020, Emma began hosting a weekly podcast, “Sleep Apnea Stories.” By sharing her journey and encouraging others to tell their stories, Emma has been breaking down stereotypes of sleep apnea while also raising awareness of symptoms and treatment options. She is also on the Board of Directors at Project Sleep. 

Dr. Meredith Broderick, MD, is a triple board-certified sleep neurologist based in Seattle, WA. Her passion is combining holistic, preventative, allopathic, and behavioral sleep medicine to optimize health and wellness. In her personal life, she is passionate about the performing arts and outdoor adventure, and she has climbed some of the highest mountains on planet Earth. She sees patients one-on-one from her boutique sleep practice, Sound Sleep Guru. She also shares from her life and tips as a sleep medicine physician on Instagram and TikTok using the handle @sleepdoctormer.

Karen Wolk was diagnosed with obstructive sleep apnea in 2015 at the age of 44. Karen tried using CPAP therapy for two years and had problems adapting to it. Karen’s doctor suggested that a hypoglossal nerve stimulator implant could be a good treatment option for her, and she received her implant in July 2018. Following her successful surgery, Karen is back to working full-time and enjoying life to the fullest. Her memory has drastically improved, and she no longer falls asleep unintentionally during the day. Karen is the mother of three adult children and three dogs. She works full-time managing a Petco store and uses her story to help others as a volunteer patient ambassador for Inspire Medical Systems. Karen is also an Advisor at the Alliance of Sleep Apnea Partners.

Podcast transcription provided by Mirela Starlight.
More information about Sleep Apnea Squad
Access the “Sleep Apnea Treatment Options” toolkit
Project Sleep’s Sleep Helpline

Emma in intro: Welcome to the Project Sleep Podcast. For those of you who’ve listened before you might be expecting to hear from Julie Flygare, Project Sleep’s Founder and CEO, but for this special series of podcasts on sleep apnea topics, I’ll be your host. I’m Emma Cooksey, the Sleep Apnea Program Manager here at Project Sleep and I’m so glad you’re here. Project Sleep is a 501(c)(3) non-profit organization dedicated to raising awareness and advocating for sleep health, sleep equity and sleep disorders. 

Emma in intro: We created the Sleep Apnea Squad series to allow listeners to dive deeper into specific topics relevant to living with sleep apnea. For more on today’s topic please check out our corresponding toolkit which is available for free on our website to download, print and share. The link to the toolkit and other Sleep Apnea Squad topics is in the show notes, or you can find the Sleep Apnea Squad page at project-sleep.com. 

Emma in intro: On this podcast all guests express their own opinions. While medical diagnosis and treatment options are discussed for educational purposes, this information should not be taken as medical advice. Each person’s experience is so unique which is why it’s so important to consult your own medical team while making decisions about your own health. 

Emma in intro: If you haven’t done so yet, please hit the subscribe button so you never miss a Project Sleep podcast episode and if you enjoyed the podcast please leave us a rating or review wherever you listen so that we can reach more listeners and raise more awareness. So without further ado, here’s today’s Sleep Apnea Squad episode. 

Emma: Hi everyone, and welcome. Today I have two wonderful guests, I have Karen Wolk. And then Dr. Meredith Broderick. Thank you both so much, ‘cause I know you’re going to add so much to this discussion. 

Emma: So I just wanted to start by saying that today we’re going to give an overview of all the treatment options for sleep apnea. So both central sleep apnea and obstructive sleep apnea. So we really have our work cut out in such a short amount of time. 

Emma: But it was really important to me as a patient advocate and somebody living with obstructive sleep apnea to provide this resource where we’re looking at all these different options together, because I think oftentimes patients struggle with— where to— you know, which specialist to see for which treatment. 

Emma: So I’m hoping we can really help clear up some of the confusion that’s sometimes around this. So let me go ahead and introduce our special guests today. So we’re joined by Karen Wolk, Karen was diagnosed with obstructive sleep apnea in late 2015, at the age of 44. 

Emma: Karen first tried using CPAP therapy for 2 years and had problems adapting to it. Karen’s doctor suggested that hypoglossal nerve stimulator could be a good treatment option for her, and she received her Inspire implant in July 2018. Following her successful implant, Karen is back to working full-time and enjoying life to the fullest. 

Emma: Her memory has drastically improved and she no longer falls asleep unintentionally during the day. Karen uses her story to help others as a volunteer Patient Ambassador for Inspire and Karen is also an advisor at the Alliance of Sleep Apnea Partners. So welcome Karen, thank you so much for joining us. 

Emma: And next we have Dr. Meredith Broderick. So Dr. Broderick is a triple board-certified sleep neurologist based in Seattle, Washington. Her passion is combining holistic, preventative, allopathic, and behavioral sleep medicine to optimize health and wellness. 

Emma: In her personal life she is passionate about the performing arts, outdoor adventure, and has climbed some of the highest mountains on planet Earth. She sees patients one-on-one from her boutique sleep practice, Sound Sleep Guru and shares from her life and tips as a sleep medicine physician on Instagram and TikTok. And if you’re not already following her there, her handle is @sleepdoctormer and I follow her and she gives really good information. 

Emma: And so just a reminder, we’re going to be talking today about adults and so, we might do another session about children at some other point. So let’s dig in, and start with— PAP therapy. So I feel like, oftentimes, CPAP, APAP, BiPAP— it all becomes kind of synonymous with sleep apnea because it’s so often the thing that’s prescribed to people in the first instance. 

Emma: So I wonder if we could start with you, Dr. Broderick, and maybe just have you explain why that is. Like why PAP therapy has kind of become the go-to and a little bit about it for people.

Dr. Broderick: Sure. Well, back when obstructive sleep apnea was first described, the treatment we had for it was something called a tracheostomy where we actually put a hole in the neck. And it wasn’t until Colin Sullivan in Australia invented this device called positive airway pressure therapy. 

Dr. Broderick: And because it was available first, it sort of paved the way for that being available. And then when something is very established then, you know, it’s sort of more familiar and it has all these pathways. And for me I always tell my patients like, I’m thinking about— if I want to think about— as a personalized thing— I want to think about something that’s accessible to you, just in terms of like it’s available in the area, you don’t have to travel, it’s going to be covered by your insurance, how much is it going to cost you, and how much risk is involved in trying it. 

Dr. Broderick: And so, CPAP, from a medical standpoint, is almost a dream type of medical treatment in that there’s very little harmful risk to trying it and it’s usually covered by insurance. So, I think that makes it very desirable. And it’s very effective in, you know, a majority of cases, as well. Of course there are some people that don’t tolerate it or have a rough journey with it but that’s— I think that’s why we start with it. 

Emma: So one of the reasons I’m so excited to have you today is that you’re one of the rare physicians who knows this from the other side. Could you maybe explain to us a bit about your experience with CPAP?

Dr. Broderick: Yes. I mean one of the things I always like to tell people is, I made it through my entire neurology training and medical school without knowing that I had this condition, and it wasn’t until I was in my Sleep Medicine fellowship— I wasn’t on call anymore, I wasn’t sleep deprived, and I would have to stand up in the middle of the day because I would get so sleepy and as I talked to patients and was being taught, I finally realized, like, wow I should probably get tested. 

Dr. Broderick: And then as a fellow at Stanford, you have to do a sleep study to experience what it’s like, and— I ended up getting a CPAP machine that year. I was in my early 30’s and it took me a while, I always tell my patients it took me about six weeks to sleep through the night with it. 

Dr. Broderick: And when I did, it was— it was quite amazing and that was the most productive year of my life I would say, in terms of just— really having—and I mean, it wasn’t like I wasn’t doing well in my life academically. But was I— the level of well-being and thriving there that could have been, absolutely not. And that’s I think that’s important to point out. 

Emma: Yeah. I really love it when people speak about their own experience with CPAP because I know for me, I’ve been a CPAP user for 16 years now. And I think that one of the things that I like normalizing is just that it did— I feel like I had every possible problem to begin with— and after like, you know that first month, I managed to straighten out those things. 

Emma: And so, you know it’s been not without its challenges, I would say, but—the difference between before I started CPAP, when I was falling asleep at the wheel— and the level of productivity and kind of normal life I’m able to have with it— it’s quite a big contrast.

Emma: So that’s kind of my thing. So I wanted to get on to— thank you for sharing your experience with us, it was great. I wanted to get on to Karen, and I wanted to ask you kind of the same thing, Karen, because I know that you had a tougher time— than either of us. So could you explain a little bit about your diagnosis, and then the two years that you were trying to adapt to PAP therapy.

Karen: Sure. So my journey really started I think from birth, you know, from what I have found— that my airway anatomy is that of a patient with sleep apnea. The symptoms of it really started to take hold in like late 2011, but I didn’t know what was wrong, nor did my doctors. So I started at a psychiatrist’s office and had word finding difficulties. I remember I was doing a large group training for an electronics company at a retail store, on a digital SLR camera, and I couldn’t remember two words— lens cap. And that was really weird.

Karen: But, that was the first thing I remember forgetting. And then it was a whole bunch of other things, in, I would say the years later— it started to accelerate. Spatial orientation, yawning all the time, feeling forgetful. One—the reason why I was at the psychiatrist’s office, because I thought maybe it was some type of ADD—adult onset ADD, or something strange that I couldn’t figure out. But my whole life I’ve had symptoms of sleep apnea, but I had no idea what sleep apnea was until I found out that I had it. 

Karen: And I had taken a family member— which I won’t disclose which one— but to a sleep doctor, and they looked at their airway and wanted to look at my airway, because they wanted to know if I had the same one, because I had described that I was having some problems. And at that point, that was right around diagnosis. And so— these years had passed and it was very obvious that I needed to get a consult. 

Karen: So I came in and the doctor said it looked like breathing through a straw. That—and I have a small jaw as well. So then I realized that all of these symptoms, like gasping and choking and snorting, and— all of the things that I would do all the time, ever since I can remember, those were all symptoms of sleep apnea. Even like, wetting the bed as a child, those are symptoms of sleep apnea. 

Karen: So I had no idea, but now, I’m 44 at that point, finding out that all of these other things, all these doctors— I went from psychiatrist to neurologist to endocrinologist to rheumatologist, all over the place, to find out what’s going on. Not one of them thought, let’s go do a sleep study. And then when I found out that I had obstructive sleep apnea and I let these doctors know, one by one each one was kind of like, wow, I really need to relook at what it is that we do— to identify patients. 

Emma: Those doctors were super pushed for time. So once you got that diagnosis was CPAP the first thing that—

Karen: Mm-hmm.

Emma:  —they prescribed and they suggested? And so tell us a bit about your journey with CPAP, to try to adapt to it. 

Karen: Yeah, you know, the CPAP was prescribed. I tried a whole bunch of different masks, I had nasal turbinate reduction, to tolerate the masks. I got sent home with nasal pillows. I’m a mouth breather, so first, right off the top— using the DME to get my equipment, I was given the incorrect equipment for me. So then finding that out. 

Karen: I think that getting the right mask and doing like PAP naps and things like that was really helpful. But I wasn’t tolerating the therapy, so I was swallowing air, and choking on doing CPAP. So we switched over— in at about a year, did a titration sleep study and moved to BiPAP, and then tried that for another year. And that’s when— found out that maybe we needed to go a different direction.

Karen: Because while I was— you know, complying, and doing as much as I could to keep this—the mask on and doing the things, I still didn’t feel better. I felt— and my cognitive impairment, which is what I eventually got diagnosed with, was very pronounced at that point, by the end of that two-year period. 

Emma: So, thank you for sharing that. I think I wanted to just show different experiences with CPAP and especially, the big thing I wanted to get across, is— like the rest of Karen’s story will show, what we don’t want is for people to struggle with CPAP and then just abandon it, right. And not treat their sleep apnea. So we’re going to talk about some other treatment options and we’ll come back to Karen when we get to hers. So, thank you so much for that. 

Emma: So the next thing I wanted to just touch on was oral appliance therapy. And so this is something that I think often gets misunderstood. So, you know oftentimes you hear people talk about mouth guards and night guards. And so I’m a little bit pedantic about what we call things. 

Emma: So, oral appliance therapy, or a mandibular advancement device— so it’s usually two parts, and what we’re talking about is ones custom made by specialist dentists. It gently holds the lower jaw slightly forward so that it brings your tongue and soft tissue out of your airway. 

Emma: And there’s all different designs— there’s a myriad of different ones. But I think that it’s important to know that this is something that, you know, is FDA approved to treat the medical condition of obstructive sleep apnea. So it’s not like a— I think like sometimes people think that mouth guards and night guards are the same thing— but they’re not. 

Emma: So night guards are protecting your teeth— and mouth guards do a similar thing, I always think of like people playing sport, right, so it’s kind of a different thing from that. So usually— I thought maybe, Dr. Broderick, you could address— that it kind of, usually we’re talking about mild and moderate cases of sleep apnea. I thought maybe you could talk about your experience with any of your patients who have used oral appliances or you’ve referred for them. 

Dr. Broderick: Sure. Well, oral appliance therapy and mandibular advancement devices, those are almost distinctive terms for dentists. They’re not necessarily interchangeable, but— the mandibular advancement device, where the mandible or the lower jaw is being braced forward and it’s being anchored forward by having this retainer in the mouth that’s connected. 

Dr. Broderick: And the reason it’s indicated for mild to moderate is because it really doesn’t help enough in severe cases. Now, that’s not always, but if you just look at the trials, the people who do best with a mandibular advancement device are someone that is mild to moderate— being thin is also a positive predictor that it will work for you— and then also if there’s positional component to the sleep apnea, so it’s worse when the person’s on their back. 

Dr. Broderick: Reason being is we think the tongue is collapsing and if we brace the tongue— the lower jaw, which houses the tongue, we’re going to have a bigger impact. So there’s different reasons why someone might have sleep apnea. And so the mandibular advancement devices, it’s addressing the tongue collapsing into the back of the throat. 

Emma: Really, thank you for explaining it. So I just should just explain, I have severe sleep apnea, and I’m wearing this at night, along with my CPAP. So for people with severe sleep apnea, there are— like you were saying, there are people of— the main issue is their tongue, then there are people where, that you know, they haven’t been able to use CPAP and they’re able to get a mandibular advancement device that helps their severe sleep apnea.

Emma: But usually it’s used for mild and moderate cases, or people like me, I was able to get my CPAP pressure titrated down to fit with the oral appliance. So I like that combination together. So that was really—oh, the big thing I wanted to share with people is just how to find a well-qualified dentist. 

Emma: So it’s worth saying that, not all dentists are trained in this. They’re— they don’t receive a lot of training in sleep. So you really want to find somebody who’s done extensive training in this area. So when I knew that I wanted to try this option, I went to the AADSM website so aadsm.org, which we’ll have linked in the toolkit we’re putting together for this. 

Emma: And you can search by location, and they have— their diplomates are the most qualified. So that’s how I found my dentist and it worked really well. So just to kind of let you know, and then the other thing about it— that I also kind of wanted to ask Dr. Broderick about—is, some patients I talk to, struggle a little bit with getting— I paid out of pocket for my device, and so some people I talk to, they struggle to have this covered by medical insurance. So it can be covered by medical insurance, but there’s just some hoops to jump through, is that something that you’ve experienced?

Dr. Broderick: Yeah, so what it is, is— it’s going to be covered under your medical insurance, but oftentimes, general dentists are not contracted with medical insurance, they’re contracted by dental insurance. And it’s not going to be covered under your dental insurance. 

Emma: Right.

Dr. Broderick: So that’s another reason, from a practical standpoint, why finding a diplomat of the dental sleep medicine community could be helpful. Because oftentimes those people are credentialed with medical insurance and then can get it covered. And, you know, some of the insurances require that you’ve “had a trial of CPAP”, some of them don’t— you know, and so that can vary a little bit. And that’s something that— you know that practice will have some familiar experience with it in your area and with your plan and can potentially give you information.

Emma: Yeah. So, the other thing I just want to— before we move on, to go back to Karen and her story— I just wanted to share that there is new technology being developed all the time and one of the things they’re working on right now is having chips that can track, like, usage of oral appliances and also like people’s oxygen. 

Emma: So I think that one of the problems has been— people like truck drivers or pilots who have to show compliance, for safety— have not been able to really access oral appliances. So I think that there’s some exciting stuff happening for the future is all I was going to say about that. 

Emma: So now we’re going to head back to Karen, and we’re going to talk about the hypoglossal nerve stimulator. And Karen, if you could, so— we got to the point where you were having a really tough time adapting to CPAP. And so can you just like share with us, like, did your doctor suggest the Inspire implant, or how did you get information about it— just pick up your story from where you left off.

Karen: So the doctor that did my nasal turbinate reduction actually was the one that ended up telling me about Inspire, one of the hypoglossal nerve stimulators. And, I— actually there was only a very small brochure in a brochure holder on the wall. And it was not very well known. And it wasn’t actually like— it was more I saw the brochure and asked about it, rather than the other way around. 

Karen: And it wasn’t even really determined at that point because there was only a couple thousand people in 2017, in July—when I— so even like the beginning of July is when I went in, of 2017. And then I did get medically qualified, at that point, after I did the drug induced sleep endoscopy which is an interesting procedure that’s similar to going in for a colonoscopy without the prep, because it’s just the good part. And how they determine how your airway collapses.

Karen: And only certain people are candidates for this procedure. But at the time it wasn’t readily available, or readily covered by insurance. So by the time I was medically cleared, and then insurance approved it, that was a year. In between the two. And during that time I was declining, pretty rapidly, cognitively. 

Karen: And so, you know, part of the thing that got me to Inspire was my motivation to get there. And I got diagnosed with a mild cognitive impairment, so I was probably at the worst version of myself that I’ve ever been. Thinking about it just makes me cry. But I was just— I remember the— all of the trials and tribulations to try to get this covered. Lots of different hoops that we had to go through. 

Karen: Then in July of 2018, not only was— got it covered, but got an appointment. Because getting the procedure, and also making sure that you know we had all the all the things covered as far as making sure I knew what to expect, because at that point there was only 3,000 patients that had had the procedure done. 

Karen: Now there’s over 75,000 so it’s a much bigger pool of patients that have had this procedure. And to give you an idea of what it does for me, it moves my tongue out of my airway every time I inhale. I have my little remote control. I turn it on when I go to sleep. And then— I have it set for 20 minutes, because that’s around my sleep latency, but it’s customizable. 

Karen: All of the settings on my device, which is implanted in my body, all of those settings are customizable to me. And I have a lot of control over them, ‘cause there’s like— settings on the back. And it moves my tongue out of my airway every time I inhale, after it starts working about 20 minutes after I turn it on. 

Karen: So, every night, I turn it on, it does its job, I have it maxed out to 10 hours. So I don’t use it for 10 hours, but I don’t ever want to have apnea again. And it— it’s definitely— I mean, it’s been six and a half years. Been a huge game changer for me. Now, I would also say that things have changed. I’ve gone through menopause. 

Karen: And that has been a huge difference, in not only— I think that made it easier for me to be recognizable as having sleep apnea. I think that’s one of the reasons why that one doctor decided to look at me. Was because I was going through peri-menopause and my airway was starting to get impacted. 

Karen: So I went from like a 9.2 AHI to a 20.6. And my pauses and breathing were up to 74 seconds, and my oxygen saturation was down to 82%. So all of the things I was experiencing when I wasn’t well, have all changed, because now my AHI is now down to a 2.7. It was at a 4.0, but they’ve done a couple settings changes, as I’ve gone further through menopause. 

Emma: So that was one thing I thought maybe you could just touch on really briefly. So I think— I mean I’ve learned so much from you, about this procedure. But I think people think that it’s like, set it and forget it, but it’s actually more like an ongoing—

Karen: Correct. 

Emma: —like, process, where they’ll be making adjustments, and—

Karen: Yes. Yes. So, you know, you go see your doctor— your sleep doctor, I generally would go, before, once every six months— once a year— and I would be an angry patient and I’d walk around kind of lost and confused and have a really bad experience and then I would go home. And then I would think about, is this working for me. 

Karen: Now there are other patients that do really well on CPAP, and have a great experience. I just wasn’t— that wasn’t my experience. But I have lots of friends and people that I know that love their CPAP. So but for those that are intolerant like myself, this was like the option that worked, right. And I was just looking for anything— that would work. 

Karen: And I think that also a lot there’s a lot of patients that give up and stop. And they put it in the closet. That’s what I hear, that’s where it lives. And that they think there’s nothing else out there. And it may be that they need to go back and try it again. Try it with a— you know, with a different group of doctors. Maybe they just need to give it another go. 

Karen: And then there are other options out there, like we’re talking about today, which is the whole purpose of this. I think that the set it and forget it idea— you know, that would be really cool if I didn’t go through changes. But I am— I am in fact going through— you know, gone through the whole menopause thing, and so I’ve had my device settings done three different times. 

Karen: So every six months I go in, instead of going in and checking my stuff on the cloud from my CPAP, I have usage data on the cloud through our SleepSync app that I use on my phone. So my doctor knows how I’m doing when I show up, or at least— how much usage I have, and I give subjective data on the app. 

Karen: But it’s been set— these different times, but every six months I go in and have my settings checked, and if they need to be adjusted, we check them and adjust them. But yeah I went from a like 20.6 to a 4.0 to a 2.7. And that—

Emma: And you’re feeling better. 

Karen: And I feel like—like I felt the cognitive impairment diagnosis, I don’t fit the criteria anymore— but I do remember what it felt like. And it’s terrifying. And they have found that like, you know, those things are related. That the cognitive impairment and sleep apnea, especially with women and menopause— those are all kind of a thing, that’s— you know. And so I think that the setting— device setting— they’re all unique to the individual. 

Karen: And some patients take a while to get to that right spot and that— that setting can need to change. And what’s great is within a couple minutes, they can change those settings, you go home— turn it on, and you’re like— it’s like getting a whole new device, almost. 

Emma: It’s kind of the size of a pacemaker?

Karen: It is exactly the same size as a pacemaker, yeah. It’s a pacemaker being repurposed for a new purpose on the other side. And there are people that have both. 

Emma: So the initial— we might just kind of briefly go through— so initially you go in for an outpatient procedure where they put this implant in— and the lead going up to the hypoglossal nerve. 

Karen: Yeah, and they put a cuff— and I used to not be able to talk about this ‘cause— made me feel queasy. But now I can watch all the videos, ‘cause I’m a pro now.  And there’s a cuff around my hypoglossal nerve. They dissect the nerve. So, and then they test it— to make sure that it moves your tongue out of your airway, and not the opposite. ‘Cause, these nerves— the nerve branch has got lots of parts. 

Emma: Yeah. 

Karen: So you want to make sure that it’s doing what it’s supposed to do. They actually test the device, they install the generator, and then the sensing lead goes to, like— the sensing lead is on mine is actually another incision, but now it’s just one incision— the sensing leads attached to the generator. And that’s intercostally placed, so it’s able to sense every time you inspire or inhale— and then that results in my tongue moving out of my airway. 

Karen: And then it’s just kind of rhythmic— you know, sensing my breathing, moving my tongue out of my airway. Once they’ve done the dissect of the nerve— they test out— once they put the cuff around it and everything, they test it out in the procedure. Then they sew you up, after they turn it back off again, send you home and you can later turn it on. 

Emma: I’m so glad you found a treatment option that works for you. 

Are you facing sleep issues or a sleep disorder? Project Sleep is now excited to have the Sleep Helpline: a non-profit-led, free national helpline providing personalized support and resources. You can reach out today to speak with a compassionate resource specialist who will listen and help provide accurate sleep disorders information, resources to help navigate daily living and the healthcare landscape, and connect you with a certified sleep center and patient support organizations. Contact the Sleep Helpline at 1(800)819-2043 or by filling out a form on our website at project-sleep.com 

Emma: So the next thing I want to talk about is for central sleep apnea. So there’s something called the phrenic nerve implant, which I thought we would just cover real briefly, ‘cause we’ve just talked about another implant. So it’s called Remede from Zoll Itamar. And I spent quite a long time (laughs) interviewing somebody all about it.

Emma: So, essentially, it’s similar in terms of that there’s an implant about the size of a pacemaker. And they have a lead that goes adjacent to the phrenic nerve, which stimulates your diaphragm to breathe, essentially. Totally interrupt me, Dr. Broderick, at any point— (laughing) if you want to add anything. 

Emma: So, yeah, for that it’s slightly different in terms of, again, it’s not suitable for everybody. But there are less requirements in terms of people don’t have to use CPAP first, before they— like it’s considered a primary treatment. And there aren’t any BMI restrictions on that treatment option either. 

Emma: And it’s similar in terms of, they have this initial procedure to get the implant— and then the patient goes home and then after 6 weeks they go back to have it turned on, and there’s a follow-up sleep study. So, yeah, so that is an option that’s out there for central sleep apnea. And that would be via— so we’ve talked a little bit about different things that are available from different people. 

Emma: So it would usually be an ENT or an otolaryngologist that would do the Inspire implant or the hypoglossal nerve stimulator. The phrenic nerve implant is usually done by a cardiologist.  So it’s a slightly different way of going about it. 

Emma: So I wonder, Dr. Broderick, if you could just explain a little bit about why position has an impact on obstructive sleep apnea and this idea of some people having exclusively positional obstructive sleep apnea, whereas for others of us it’s just an element of what’s going on.

Dr. Broderick: Sure. I think there’s a little bit of— misconception about positional sleep apnea where, let’s say someone has a sleep study and it does show a very pronounced positional component. I think, you know, the inclination is to say, well I don’t want to wear a CPAP— I don’t want to do a sleep apnea treatment, I just want to do a positional treatment.

Dr. Broderick: And— you know, there’s what conceptually makes sense, right, it conceptually makes a lot of sense to do a positional treatment. But when you implement positional treatments they don’t work very well. And it’s very hard to— it’s very hard to control the position that someone sleeps, and I think that people also think they know the positions that they sleep in, but we know from studying people in the lab that people are often very surprised that they don’t sleep in the position that they think they do, or— different variations of that. 

Dr. Broderick: And so, I kind of think of positional therapy as like a tool in the toolkit, but it’s not— even if someone has a strong positional component— I see it more of a clue to kind of the cause of their phenotype. It’s, you know, a biomechanical aspect of the sleep apnea. And so if someone does really well with positional therapy, you know that’s great. But it may— you know from an implementation standpoint, it’s a little just harder to know. I mean if I study you one night, and it works—

Emma: Right. 

Dr. Broderick: —but how do I know what happens all the other nights just because the— our position is so variable. 

Emma: Yeah. I think also— just having no data, right, like you don’t— like I think sometimes— what can be really enticing about CPAP is you actually get the data the next morning to see like you know how many hours you slept and all the things. And I think that sometimes just having a positional therapy device on its own, like you— there’s no— apart from how you subjectively feel, there’s no data around it. 

Emma: But it is worth saying that there’s now insurance coverage for a device called Zzoma. So before it was just— but I mean these are not very expensive devices, anyway. They’re quite low-tech, a lot of them. So there’s things like Sleep Noodle and slumberBUMP. Which essentially you’re wearing something that’s on your back and it stops you from— you know you really can’t sleep on your back with that— while wearing it. 

Emma: So yeah definitely worth exploring, and I also think with sleep apnea, people are often looking for one solution (laughs) and oftentimes, you know, a combination of— there’s nothing to stop you doing a combination of— whether it’s CPAP, oral appliance, anything else—with positional therapy together. So yeah, and it’s just a really good thing to talk to your doctor about, right. 

Emma: So like Dr. Broderick was saying, having your doctor— like certainly my doctor hadn’t really talked to me about it until I asked him. And then we kind of sat down and put our heads together and— and I certainly did try some position— I just couldn’t— I find myself not being able to get comfortable with the positional therapy aid and the CPAP and all the things. So it’s a really personal thing, but it’s definitely an option for people. 

Emma: So we’re going to move on to medications. So, Dr. Broderick, I’m hoping— medications really— different medications can be used in different ways for both obstructive and central sleep apnea, so I wondered if you can just maybe talk to us a little bit about the currently available medications and then we might talk about things that are coming in the future. 

Dr. Broderick: Yeah, so I mean for the currently available treatments I think you’re mostly talking about treatments for residual excessive daytime sleepiness. So we do have these alerting agents that we use, and I think the big news at the Sleep Meeting this year was that the GLP-1 agonist, specifically Tirzepatide, is being studied in patients living with OSA who also have obesity or, you know, are over like a body mass index of 28, or— have to double check the number for the cutoff, but— but showing also a really impressive benefit. 

Dr. Broderick: And I think this speaks to what you said earlier, that I think one of the biggest challenges as a healthcare provider is being able to work together in a multidisciplinary fashion and to really think about all the angles because, you know, I came into sleep medicine as a neurologist mostly because of seeing people have strokes. 

Dr. Broderick: And so, if I see someone and I make their AHI normal and they feel better but they still have other cardiovascular risk factors, I really didn’t look at them holistically. And so I think that’s one of the ones I’m excited about, but also making sure that you think about that the person could still be dealing with excessive daytime sleepiness, drowsy driving, you know decreased quality of life from excessive daytime sleepiness, from the permanent changes that occur from if you’ve had obstructive sleep apnea for a long time.

Emma: Yeah. Thanks for that. So then that takes us on to— ApnoMed are developing the first sleep apnea— so obstructive sleep apnea—pill, that people would be able to take as a nightly pill. It’s not available yet but it’s in phase three trials. So I don’t know even how much you know about that. Like so I know it’s not even like on the market or anything. 

Emma: But so my understanding is it’s aimed at— they’re really looking at increasing oxygenation during sleep, and they’re targeting like— the neuromuscular collapse, kind of thing, to try and— that’s my understanding. (laughs)  

Dr. Broderick: I think the challenge for us is going to be— to be able to characterize these subtypes. You know, the AHI is really just such a generic term and we know that because we have people who have an AHI of 5.0 who are severely symptomatic, and we have people that have severe AHIs that feel like, I wouldn’t be here unless my spouse told me that I had to. 

Emma: Yes. Yes.  

Dr. Broderick: You know, and so really trying to understand what these subtypes are. That’s true for central sleep apnea too. You kind of think of it as like one category but it’s almost like in a way, saying cancer, where there’s all different types of cancer— and so us really trying to understand through biomarkers, diagnostic testing, through what people tell us. So that— I think with that medication, specifically, that’s what I would be thinking is— if we can really narrow down the subtype of the—

Emma: Yeah. 

Dr. Broderick: —of the type, we can— that medication— and obviously, I mean in terms of practicality, it’s so much easier to take a pill than it is to get a surgical implant or— and you know, have to— all the titrations that are involved with that, and then— accessibility wise, right, I mean unless it’s really expensive. But I mean it’s easier, implementation wise, for patients. Which is I think—exciting. 

Emma: Yeah. I do think that what you hit on is really interesting to me— is this just from interviewing so many people for years, like, the difference between the severity— like you have two people who have exactly the same AHI, and you know they’re starting to talk about hypoxic burden and like you know if somebody has the same AHI, but their, you know, brain is hypoxic for a lot longer, it’s going to— you know, you would expect that it would have more of an impact longer term. 

Emma: So it’s just a really— it’s interesting, but I’m just always impatient that I want to— let’s get to the next thing, because I think ideally, it would be great to be able to tailor specific treatment options to what that particular patient has going on, and I just don’t think we’re quite there yet. Like we’ve got clues, but it’s just, yeah in terms of diagnostic testing, it would be good to be able to say, this person would do great with that treatment.

Emma: So, I wondered if you could maybe share with us a little bit about your MARPE experience. So there’s surgically assisted rapid pallet expansion, is one of the things offered— so sometimes it’s specialist orthodontists and other oral maxillofacial surgeons get involved with it. And there’s so many different versions, right. 

Emma: So, SARPE is Surgically Assisted Rapid Pallet Expansion, and then what you did is MARPE, Mini Screw Assisted Rapid Palette Expansion. But there’s also depending on the doctor like there’s the EASE procedure, there’s the MIND procedure, there’s different ones. So maybe you could just talk to us a little bit about starting with— you know, the roof of the mouth is the floor of the nose, and why pet expansion has anything to do with our airway. 

Dr. Broderick: Yes. 

Emma: Tall order, I know. (laughs)

Dr. Broderick: Well, I think as Karen mentioned, of the story of someone that is diagnosed with sleep apnea, a lot of times it begins in childhood. You know, in my case, it was I had allergies, I had adenotonsillar hypertrophy, so I was mouth breathing— I probably had low tongue posture, and so the growth of the nasal and the mandible— or the jaw bone— it affects the growth, it actually affects the way it— the way the jaw grows and a lot of that has to do with the tongue and the muscle tone and the way we use our tongue and our speech and things of that nature. 

Dr. Broderick: So, we know from pioneering colleagues of mine at Stanford, that jaw surgery— actually breaking the jaw bones and moving them forward— it increases— it anatomically enlarges the airway. And of course if you can do these pallet expansions and orthodontics and you can shape the growth of the craniofacial complex in a healthy way, then anatomically, you can sort of eliminate or mitigate that risk factor, right. 

Dr. Broderick: But if you’re like, you know— if you’re like me or some— (laughs) you know, some other people— that didn’t happen when you were a child. And now my bones are fused and I’m not growing anymore. In fact my mid face is contracting because I’m getting older. 

Dr. Broderick: And so what this procedure aims to do is instead of being so invasive of breaking the jawbone, what they’re doing is— they’re implanting an expander with little mini screws into the roof, and then using— trying to implant them into the bone— the screws. And then use a distractor, basically, which is the expander— to open the suture that’s where the bones fused— and to expand the nasal bone, which as you mentioned is the floor of the nose. 

Dr. Broderick: So I sort of fell into that backwards because I was noticing, as a lot of people do, ask a lot of people if you’ve had orthodontics and they’ll say, yes I did, and then I had it a second time, when I was getting crowding and overlapping in my 40s. And so that was happening to me and I actually ended up chipping a tooth, and I saw an aesthetic dentist to have it fixed, and she said you need to have some retention of your—your teeth are going to contract, it’s going to continue. 

Dr. Broderick: And once I saw the orthodontist for that— you know, she knew about my medical history and she said, you know, you could consider this. And I thought, I don’t know if I want to do that because I’m good on my CPAP, right. 

Emma: Right. 

Dr. Broderick: But it really is a pretty— it’s like a minor oral surgery. And it’s really just— you know, I was going to have the Invisalign anyway, so it’s really just having the expander in there for you know, six to 12 months and I thought, well why wouldn’t I. And I really noticed, I mean sort of every time I turned the expander, my CPAP pressure went down. 

Dr. Broderick: And as you know, Emma, because you wear that oral appliance for the same reason— the lower your CPAP pressure is, the easier it is to tolerate. Because you don’t— your mask doesn’t leak as easily, it’s, you know, for many reasons, right. It doesn’t dry your nose out as much, and things like that. 

Dr. Broderick: So, I noticed a tremendous benefit, I’m still waiting to do my post-treatment test but, I can tell you like if I don’t wear it, like I go on vacation for a weekend, I don’t really notice much of a difference the way I used to. So—

Emma: Really, interesting.  

Dr. Broderick: Yeah I think it’s really helped a lot. And I breathe better through my nose, that’s very noticeable, especially when I’m exercising. 

Emma: Yeah. Well, that’s awesome. Thank you for sharing that. I was following along on social media as you were posting about your MARPE journey and it was just super interesting to see. So you mentioned nasal surgery, so I wondered, Karen, if you could just tell us a little bit about your— you said that you had a turbinate reduction? 

Karen: Yeah, I did nasal turbinate reduction when I was having trouble breathing through my nose, because I’ve always been a mouth breather, I don’t remember not doing that. I could never breathe from my nose especially on the right side, it would collapse— 

Emma: Yeah. 

Karen: —on the right side. 

Emma: So it’s worth saying for everybody tuning in, that nasal surgeries aren’t considered like, per se, a sleep apnea treatment. I know ENT surgeons I’ve talked to, they’re not going to be— like insurance is not going to be covering it as a sleep apnea treatment. But I think that in terms of using CPAP or oral appliances or any other option— like having a functioning nose is really important, right.

Karen: I think mine was covered because it was— breathing during the day, too. 

Emma: Right. Yeah you just couldn’t breathe.

Karen: I couldn’t breathe through my nose. 

Emma: Yeah, that’s a problem. So, yeah, so some of the other things that people have are septoplasties, where you have a deviated septum, which is really common. Turbinate reductions and sinus surgeries. And so, again, they can help with this whole thing, but they’re not like considered a cure, or anything. 

Emma: So we’re kind of digging into a lot of different surgeries. So I just wanted to share— I think sometimes people don’t think about it, but tonsillectomy is for people who haven’t had their tonsils removed as a child. So I went all of my childhood with really large tonsils and I didn’t have them removed ‘till I was 19— but that certainly like, that can really cause an obstruction in your airway, that it’s good to have resolved.

Emma: So again, that would be an ENT surgeon or an otolaryngologist that would be doing that. And so the other thing I wanted to get Dr. Broderick’s input on, is— there are a number of like soft tissue procedures, that— that I’m hearing like people still being offered, like by ENT surgeons. So things like UPPP or tongue-based surgery or palatal surgery. 

Emma: And I just think there’s a vast array of different ENT surgeons absolutely trying to do the best for their patients with the training they have, but there’s very differing, like— certain people are like, leaders in this field— and then other people, you know— haven’t maybe like, kept up with new technology and new ways of doing things. 

Emma: So the thing that I recommend to people is go to the International Surgical Sleep Society just because a lot of their members are really engaged with like newer techniques. So is that something that you’re referring people for, Dr. Broderick, or do you have experience of like people coming to you, having had those kind of procedures? 

Dr. Broderick: Definitely. I mean, my husband’s actually an ENT, so it’s kind of interesting, I get a vantage point from him. But, I mean I’m lucky in that where I am there are ENTs that specialize in sleep medicine and I think that that is the best case scenario, is if you have an ENT and I think that’s one thing to know, is that— it is a sub specialty within sleep medicine, or within even otolaryngology, and, you know, so we will sort of— I will sort of get people that will go to a community ENT and then they’ll say, your tonsils are too small to take out. 

Dr. Broderick: Which, you know I wouldn’t necessarily agree with, or— they might offer to do like a really old school UPPP, which I wouldn’t agree with. So I do think you have to be careful and like in my— the advice I would give to patients is, if you can have your— a sleep medicine physician give you some input. 

Dr. Broderick: Or you have an ENT that you know specializes in sleep apnea surgery. One way to know whether they do that is they can be board certified, they can be a member of the society that you mentioned. And a lot of times if they are doing the Inspire procedure, they have some expertise in sleep medicine, as well. Because you sort of have to, you know, have some understanding and you probably communicate a lot with sleep medicine physicians if you’re doing that procedure. 

Emma: Yeah, and the other thing I think that it’s just great to get on the same page with your surgeon, like I think sometimes there’s some miscommunication can happen where the surgeon’s doing their very best and they’re looking at— some people were looking at like the Scherer criteria, where they’re looking for a 50% reduction in AHI. 

Emma: And I’ve talked to a few patients where it’s like, they didn’t really maybe research the procedure as much going in, and they come out expecting this to give them a complete cure. So just, like, talk with your surgeon I think is really good advice, about what a successful outcome could look like. 

Emma: So yeah, that’s great. So, and then—

Dr. Broderick: I’ve had patients that have gone for Inspire and, you know, had it recommended and then I’ve told them like, I don’t think you’re a good candidate because you have chronic insomnia and I’m worried about— you know, that’s something to think about— and it just may not be something that comes up— it not may not be something the surgeon is necessarily probing about.

Emma: Yeah. 

Dr. Broderick: At no— you know, and that’s not to blame them— but it’s just, I guess to say sometimes when you have like more than one specialist looking at it, you can get that more comprehensive—

Emma: Yeah, like a holistic look at it. 

Dr. Broderick: I mean, surgery is all about expectation management. That’s a huge part of being a good surgeon. It’s not just about the technical component, it’s about your communication with the patient and making sure they understand what to expect.

Emma: Yeah. Well I think that speaking of patients I think you have one to get to Dr. Broderick, so thank you so much for joining me, I really appreciate it. 

Dr. Broderick: My pleasure, thank you so much. 

Emma: Okay, we’ve got a couple more things really quick, and then we’re going to wrap it up. So, Dr. Broderick did mention MMA surgery, so double jaw surgery, you would go to an oral and maxillofacial surgeon, where they break— usually both jaws, sometimes just one— and they move forward your jaw to make more room in the airway. So that can be a pretty potent treatment for sleep apnea, like it can work really great for certain people. 

Emma: I would say for that procedure the insurance coverage varies, so some policies do have exclusions for double jaw surgery, so it’s going to be really important to ask questions of your insurance provider. And so even if they do cover, often there’s this pre-authorization thing, it’s a whole— but you can— any specialist who does that surgery can advise you. 

Emma: So we already covered all that— and then the other thing I thought I would briefly share is bariatric surgery, I think oftentimes people overlook bariatric surgery for people where weight gain has been part of the picture as to why they’ve developed sleep apnea, bariatric surgery can be a really effective tool. 

Emma: Usually it’s people that have other health concerns going on and they want to address all of them, but certainly I’ve interviewed people who have had a successful bariatric surgery and it’s resolved their sleep apnea. So really quick, a few other options that we have not had time to dig into but we’ll add into our toolkit. 

Emma: The reason we’re not spending a lot of time on these is that, while they’re FDA cleared options, they don’t have wide insurance coverage. So these are very much— when we talk about sleep equity— these are things available to people who can afford to pay for them. 

Emma: So we’ve got eXciteOSA, so that’s a daytime treatment for only mild sleep apnea. So it’s for mild sleep apnea and snoring. And it’s a small device that sits, and tones and strengthens your tongue during the day, so there’s that. 

Emma: There’s also iNap, so that’s an FDA cleared, nighttime device. It’s made by a company called Somnics, and it kind of like has a little mouth piece and a small unit— and a little— not like a CPAP hose, but like a smaller tube. And that uses negative airway pressure to gently pull your tongue and soft tissue out of your airway and kind of hold it, with like— it creates negative pressure inside the oral cavity, to hold it in place. And there’s like a small pump that does that. So it’s really interesting. So again, that’s iNap, and the company’s Somnics. 

Emma: And then, another one is ePAP, so not to be confused with CPAP, BiPAP, APAP and all the other thing— all the other PAPs we talked about. EPAP means Expiratory Positive Airway Pressure. And so this is a small device. So the names are like Bongo Rx is one, and also ULTepap. So you need a prescription for this, but they’re usually pretty affordable, like a couple hundred dollars, devices. 

Emma: And so, the way that they work is, you breathe in through your nose, as normal, and then as you breathe out there’s resistance which holds your airway open, just enough to treat your sleep apnea. So it’s pretty interesting too. Again, not really covered by—widely, by health insurance plans, but these are the kind of things that you can often use HSA or FSA accounts to fund them. 

Emma: Thank you so much for joining us today and sharing your experience and your insights, it’s been really helpful. 

Karen: Thank you, Emma, and I was just thinking, that first time we talked, a very long time ago— feels like yesterday, though— I’m just really happy that we’ve been able to raise so much awareness. So that other people aren’t like as lost as I think we both have been in the past. So like, it’s nice to know that there is a path and it goes different ways, and the goal is what works for the person not what works for—what works for me, not might not work for you— that doesn’t mean that either one of them are more important or more effective. 

Emma: Right. 

Karen: There’s not— it’s not a cookie cutter thing. It’s definitely a different— a choose your own adventure, that’s what it is. 

(Emma and Karen laughing) 

Emma: I just love it. Okay, well thank you so much. So this is— I just wanted to kind of sum up some of the themes that have come up today in our discussion. So, one of the issues we do see— I think I wanted to share this just so people don’t feel alone in this journey— so I certainly have felt like there are a lot of different providers, so often involved with this journey. 

Emma: So— and often they don’t have a lot of opportunity to work together, necessarily. So, if you feel that way, you’re not alone, right. There are a lot of different specialties offering different treatment options for sleep apnea. 

Emma: And the second one is just so key to everything that we do here at Project Sleep, advocating for yourself in health care settings is so vital. So if you are— using a treatment option that’s not working well for you, then I just really encourage you to get educated about what your options are, and— you know, keep going back to your healthcare provider, with your issues, and—yeah, I just encourage you to— sometimes it feels lonely, but it’s really necessary sometimes. 

Emma: And the third thing I think, which I— you know, talked about a lot today— was just access and equity. So people without the resources or the adequate health insurance, for all these different options, do experience barriers, right. So, the number of options you have is drastically reduced if you can’t afford to pay out of pocket for a lot of different things. So we just haven’t like focused a lot on a lot of those options just because we want to get information out for most people, right, and what you have access to. 

Emma: And then, as I mentioned, so we have a toolkit coming, and in that we’ll have a bunch of different resources, like on there. There’s really great places you can go to search in your area for an AASM Accredited Sleep Center, or an AADSM trained dentist, like I talked about. And oral maxillofacial surgeons have their own group, like there’s a bunch. So we’ll have all of them listed in our toolkit to come. 

Emma: And I also just like to give a shout out to the other patient organizations working in the space. So Project Sleep, our sleep apnea program’s very new, but there’s other organizations that are doing great work. So, the Alliance of Sleep Apnea Partners, or ASAP, is also really active. 

Emma: And there’s the American Sleep Apnea Association and the Reggie White Foundation I like to highlight because they both have programs for people who are trying to access CPAP, but can’t because of their insurance or— just that they can’t afford it. So they will help you with resources. 

Emma: And— let’s see, oh yeah. So, Project Sleep have a wonderful free resource, it’s a Sleep Helpline, so it’s been in operation only just past its one year anniversary. So we provide navigational support, so anybody dealing with any sort of sleep issues can call our helpline, or get, you know, fill out a form online or send an email and— we’re not giving medical advice. 

Emma: What we’re doing is helping people— so if somebody calls, and they really need to find a neurologist in their area we can help them with that. Or a CBT-I professional— so that’s kind of behavior therapy for insomnia— and we just have a bunch of resources in people’s local communities that can help them, so I just really— you know if there’s any providers listening, you can give this to your patients just to have some empathetic support along this journey that can be a lonely one. 

Emma: Another thing I wanted to highlight was our Rising Voices Program. So this is a speaker training program that I’m a graduate of. So we take people living with sleep disorders and we put them through a program where we train them to share their story, in a presentation that they can then give. And I’ve spoken in schools, I’ve spoken to companies, conferences—so, there are a lot of different Rising Voices Speakers and now covering a lot of different sleep disorders. 

Emma: So there’s people with narcolepsy 1 and 2, there’s people with idiopathic hypersomnia, there’s, you know— people with sleep apnea, so— if you haven’t had one of our speakers come to speak where you work, or in your child’s school— reach out and get in touch with us. We’d love to send one of our speakers to you. 

Emma: So I want to say a really big thank you, we have— as a small non-profit, we have wonderful individual donors, so some of you might be tuning in today, so I just want to say a really big thank you. And also, I’m so grateful to our corporate sponsors, Lilly and Apnimed. My work wouldn’t be possible without them, so I’m just really grateful. 

Emma: And I want to say a huge thank you to everybody for tuning in. So it’s worth saying also that we have e-updates specifically about Sleep Apnea Squad, so that you can get notified when our other resources like toolkits become available, and it goes straight to your inbox. 

Emma: If you want to use the #SleepApneaSquad we’d love to see what you’re up to. So thank you all so much for joining me, and I’ll see you next time.