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Episode 113 - Dr. Scott Saunders - A Patient Journey with the Inspire Implant

1:07

It's Emma Cooksey here and I'm your host.

So if you're listening right when this episode comes out and I'm in Florida and we're about to get Hurricane.

So I'm trying to get this episode finished and and teed up so that I can go and charge all of our.

1:26

Backup power, especially for my CPAP.

And and just make sure we have enough water in case anything crazy happens.

And usually, you know, when we've had hurricanes pass by before, we've lost power for, you know, a day or two.

1:42

So I'm hopeful that it's not going to be much worse than that.

For anyone listening on the other side of Florida who is more, you know, like in the cone where they're tracking the storm, I'm just sending you all my love.

If you listen hard, you can hear the rain starting.

2:00

I'm in my closet, but I can hear that there's all sorts of rain going on outside.

So today's guest is Doctor Scott Saunders.

And I was so glad that he joined us to share his journey.

2:16

And because he's been through a lot.

And I think sometimes it's really helpful for people out there who just are having a really tough time with this whole journey of sleep apnea to hear, you know, stories of other people really going through, you know, trying a lot of different treatment options and having problems with them.

2:39

And, you know, it's just really a challenge.

But I think it makes a lot of us feel less alone.

So I'm really grateful to Doctor Saunders.

So Doctor Scott Saunders is a dentist, now a researcher, speaker, and writer on airway sleep and oral health.

2:58

He Co founded Healthy Mouth Media and is the producer of the Functional Oral and Airway Health Summits.

With his partner Bonnie Benjamin.

Scott received his DDS degree from Georgetown University School of Dentistry and he practiced general dentistry and periodontal Wellness.

3:20

Importantly, Doctor Scott suffers from severe obstructive sleep apnea and probably has for most of his life.

He's currently using the implanted inspire device and is recording his journey and experiences with it at healthymathmedia.com/inspire.

3:38

So without further ado, here is my conversation with Doctor Scott Saunders.

Doctor Scott Saunders, thank you so much for joining me.

Thank you, Emma.

Appreciate your having me on.

3:54

Pleasure.

So I'm kind of I spent the weekend watching some of your videos that you have posted about your journey so far, and it made me sad that we're not doing this in person because I kind of want to give you a hug.

4:10

Thank you.

I appreciate.

That you've been through a lot with this and.

So let's just start out.

I mean, it's your story and you can really tell it however you want to.

But I think it'd be really helpful to kind of go back and and talk about like when you think symptoms first started.

4:29

I know that's probably not right when you got diagnosed.

So do you want to take us through the kind of early stages up to your diagnosis and how it all happened?

Sure.

Well, it all started in utero.

I did have sleep problems when I was a very young child, mainly insomnia, which unfortunately persists to this day and really is comorbid with my OSA.

4:53

But we can talk about that later on.

I could not get to sleep.

I was fearful, you know, monsters in the closet, monsters under the bed.

And seeing how the story is unfolded, I see now that.

Sleep issues have been with me probably since early childhood and there's probably trauma remembered or not remembered, that is getting in the way of mainly my ability to sleep and and then we have the OSA, which I can't really give you a good time frame on when that started.

5:32

I lived alone until 2009, when I met my current wife, Bonnie.

We've been together for going on 15 years and we just got married this year.

But.

Congratulations.

Thank you, Thank you.

Up until that point I had no bed partner.

5:48

I was, it was just me, me and my cats basically.

So.

Hey, we're probably not giving you feedback on whether you had any pauses or snoring or.

No, they were pretty much sleeping through the whole thing.

Yeah, so and.

In any case, when Bonnie and I started sleeping together not long after that, she asked me, are you aware of the fact that you stopped breathing for like 20 seconds at a clip when you're asleep?

6:19

And I was like, no, I was never aware of that.

Well, you do.

So that prompted me to investigate further.

I was.

I was being treated for or I was in the midst of what was probably my third bout of Lyme disease.

6:39

I had not been diagnosed for the third time, but I had had it twice and you know, verified on PCR western glove the whole 9 yards.

And this was 2009 going into 2010, and we have a bunch of stuff happening I was seeing.

7:00

A psychiatrist for my ongoing issues with major depressive disorder, for which I've been taking one medication or another since 1995, and insomnia, which we were playing around with different meds for that which really didn't work.

7:18

And I realized that the mainstream medical community is back then was not terribly literate and is only by my observation, not.

Much more literate now about the diagnosis and treatment of Lyme disease and one of the things you're and honestly sleep, yes.

7:41

And sleep disorders, but yes, definitely with Lyme for.

Sure, but right.

And all these things were going on.

And Lyme tends to hit you at your weakest point, which with me is my mood.

And my depression worsened.

My obsessive compulsive disorder worsened.

7:59

I wasn't sleeping.

I always had the insomnia and kind of had just come to accept that.

And I found my way to a what is called, I guess still a Lyme literate Doctor Who started looking at things that primary care docs.

8:16

Don't even know to test for.

Not the least of which was testing me for vitamin D, which at that point was 16 and.

If you talk to people who really know that should be in the 50 to 70s range, but you know, who knew?

Nobody was.

8:31

Nobody was testing for it back then.

So that was feeding into it.

What turned out to be a Lyme disease diagnosis, which this doctor got me to, was feeding into it.

And I was seeing my psychiatrist for management of my medication and, you know, just basically talking through what was going on.

8:52

Do you have a therapist to do talk therapy with as well or just the medication was?

Managing it At that point, I I did not.

I had gone through probably an aggregate of seven or eight years of cognitive behavioral therapy, which was absolutely worthless.

9:09

I mean it.

Certainly doesn't work for everybody, right?

It doesn't, and CBT does not work for trauma and there.

There are mainstream arms of psychotherapy that still don't don't get that.

So I'd given up on that.

I was seeing my psychiatrist for medication management and very nice, kind woman.

9:31

I could talk to her about anything and I told her about my sleep problems.

And I happen to mention, you know, my girlfriend told me that I probably have sleep apnea and she said, oh, you want me to order a sleep study?

But it didn't go to boom.

Sleep study ordered by a psychiatrist.

9:47

I don't know how often that happens, but you know, hey, I'll take it.

And I mean honestly, since since I've been doing this podcast, you're certainly not the first person that has has come to a sleep test because there's psychiatrist has said like you know, I really think you should do a sleep test.

10:03

So.

That that's good to hear that's good to hear that there is that there is some somebody besides the primary care doc who.

Generally, I'll I'll be honest with you, Emma isn't really even going to talk about sleep, and it's not going to ask the the patient how.

You don't have any training in it.

10:18

I'm not going to ask, you know.

Or do you?

Do you have trouble breathing when you sleep?

Do you have?

They're they're not going to say do you have sleep apnea or have you had a sleep stone?

No, it's just not going to happen.

There's but cardiologists I feel like cardiologists and psychiatrists and some of these other specialists I feel are are gang a bit more switched on to the importance of sleep and how it impacts their specialty.

10:41

So of course it's all kind of split up, but yeah, I hear that quite a lot from.

People, yeah, it's it's still very, very siloed.

But I think you're right, the specialty medical community is a lot further ahead of the curve than is the.

Primary care and as you said, you know they're they're not trained for that.

10:57

They're they're they're punched into this time slot of seven minutes for the patient.

And I don't envy primary docs.

There's the test that they have to do, and they're not trained in sleep.

So what?

Is it trained in sleep?

So you had the sleep study, so it's a polysomnogram.

11:14

That was 2010.

And what did that show?

That showed severe obstructive sleep apnea with an AHI up in the 70s, which is.

What was your feeling after that?

Like, were you surprised?

Were you?

11:30

How did you feel?

Not really, Especially given what Bonnie had said.

Right.

You know, I knew something wasn't right.

And I'm thinking, OK, well, if I'm stopping breathing, well, I.

See, you must be significantly sleepy during the day if that's the level.

11:46

Yes and no.

Sometimes yes, sometimes not.

I mean I I was on a an antidepressant medication that made me sleepy and I think mainly because of that I would tend to fall asleep while stopped at that at a traffic signal, which is no bueno.

I mean you you can relate to that giving you your your own story you know with your with your child in the back and that was a turning point moment for you.

12:09

But in general, Emma, I don't think I I ever had a really.

A really good a really persistent problem with sleepiness during the day.

Okay.

It just wasn't a reliable indicator.

So then when you got the results of your sleep study, did they tell you the treatment for this is CPAP and put you on that straight away?

12:34

Did you discuss other options?

What happened?

Cpap.

Yeah, the entire universe is CPAP.

And how how was the like education around that?

Like, I mean I.

Know for me right when.

I was first on CPAP.

12:50

They gave me a CPAP in a plastic bag with like a mask that didn't fit my face and just sent me over.

So was that a similar kind of experience?

It was.

It was.

I feel your pain.

And to be honest, I mean, I had what was state-of-the-art then I had the one with the nasal pillows.

13:07

I mean, it was a.

It it was a great machine, but you know as as you well know it it hampers your lifestyle.

It's like a part time job.

You got to clean it and half the time I would wake up and it would be off.

The worst problem with it was I couldn't sleep with it.

13:24

It exacerbated my insomnia.

I couldn't sleep and it when I when I had it on and all it did was basically blast my blast, my airway open.

And I never was able to collect sleep data most importantly.

13:40

Just because you.

Weren't able to sleep.

Most importantly, assessing sleep stages during sleep CPAP therapy, which is that's very difficult to find on the Internet.

I'm an experienced medical medical literature researcher and I have looked and looked and looked for that because I've I have friends in the industry who have told me you know, anecdotally well.

14:04

You know what happens to your REM sleep when you're wearing a CPAP device?

You're not seeing a lot of data published on that.

So I don't want to.

I don't want to paint anyone or anything with a broad brush, but I think.

I mean, I think also, I mean, I hope things are getting much better like just in terms of the more that wearables become a bit more reliable like I think that that gap between therapeutic grades.

14:32

The sleep studies that are kind of you can do at home and wearables that people, I hope that that gap really closes and we start seeing like really good data.

Yeah, it's a challenge because people are told like you're doing great with CPAP if it's reducing your AHI, but there.

14:52

They're not looking at like, yeah, but I still like, I was still having that for a sleepiness scale of like 15, you know?

Yeah, you had to look at it.

Wasn't feeling well rested.

Yeah, right.

You had to measure a number of variables and you had to interpret them all together and as you are doing.

15:08

More often than not, the treatment involves more than one modality.

Right now, I found that CPAP definitely totally did not work for me.

I could not.

Do so how long did you give it until you just were like this is not working and I have to give.

It about two months.

Okay, about two months.

I give it a.

15:24

Go.

Yeah, yeah, yeah.

And of course you have to be CPAP intolerant in order to get the INSPIRE which I ended up.

Getting down the road.

Yeah.

And so when you did, you go back to your doctor and say this is not working for me, What else have you got?

15:39

Or did you find a dentist?

Or what was the next thing?

The next step was basically not not getting any treatment at all.

I tried.

There was a gap there.

15:56

There was a gap there where I didn't really do anything at all in. 2017, I went to a sleep dentist back where where we used to live in Lancaster, PA.

There is a dental Sleep Medicine dentist in York which was a couple towns over and he made me an oral appliance called the Tap Appliance, which you, you and your listeners are probably familiar with.

16:20

And I wore that for probably the better part of a year.

And I did probably.

Probably six or seven home sleep tests while wearing that and it it proved to be virtually ineffective.

16:37

I was still in saturation, was still dropping into the into the mid 80s and my HI was still up there.

Let me back up a minute.

Before that I had a follow up PSG Sleep Lab study in 2013 which confirmed what the first one in 2010 said, which is?

16:55

You got severe obstructive sleep apnea and I saw another sleep doc and beyond CPAP, he really was not able to.

He said Okay oral appliance therapy, he said, yeah, you can certainly try that.

17:14

I think there's a lot of variation in how familiar Sleep Medicine physicians are with oral appliances, which are made by.

Some of them are unbelievably not.

Familiar with them at all and don't know anything about it, which is astonishing when you think about it.

17:32

It's there was a time in my life, Emma, when I would have been astonished.

But the more I have seen, and being a healthcare clinician myself, in the thick of it, I mean, I know how to talk to doctors.

I know how to talk to dentists.

I've seen the way things work.

17:48

I won't say from the inside.

Dentistry somewhat but certainly not medicine.

But you know I don't pull any punches with with MD's or D those either.

And I I said you know look this is I need more information here and they're they're the information was sketchy.

18:11

So this sleep doctor referred me to an oral surgeon who made another type of appliance and we ended up.

Not working together, we were.

Another mendibular advancement.

Device or right, right.

18:28

It was, I believe it was, it was wasn't a tap appliance, it was another another brand name.

But in any case we ended up not working together.

And you know, one thing I want to point out is the Sleep Medicine or sleep dentists, Sleep oral surgeons, dental Sleep Medicine, dentists.

18:48

Tend to apply A1 size fits all philosophy toward mandibular advancement appliances and they tend to prescribe the same appliance for every patient that comes through their practice, which.

So I had exactly the opposite.

I do really okay.

19:05

With my dentist, but I think that.

You know, a lot of that is the level of research I did like into which dentist I wanted to go and see and I think I've just been extremely fortunate.

But I have absolutely heard what you're, you know, like there are dentists who literally only have one make available for their patients and that's all they have like and they don't have like other because they really vary a lot.

19:34

They do.

And and this goes along with, you know, the philosophy of when you practice dental, sleep, medicine, you can basically go out there, and I hate to say this, but fly by the seat of your pants.

You take CE courses, you take, you know, whatever.

The only benchmark out there is to be a diplomat of the American Board of Dental Sleep Medicine.

19:56

And there are people.

There are dentists out there practicing dental sleep at medicine and Emma who have who have likely never heard of that certification, the board or the A ADSM as a society, that's really, to my knowledge, the only true certification out there.

20:12

And you know, I know what questions to ask and the first thing I asked this dental Sleep Medicine dentist was okay.

So when are we going to schedule the cone being computed tomography?

I don't know how familiar your listeners are with that.

20:28

Yeah, pretty familiar by the stage.

You know what it is, right?

Yeah, I've had so many.

It's like a 3D.

It's like a 3D CT scan of the the bottom 2/3 of your of your head.

Yep.

And it shows you everything and you can measure the volume of the airway.

20:45

And this guy said, well, we don't do that and.

I feel like most.

I think I feel like most dentists who are doing this, there is an element of try and see, right?

Like let's just not bother with that.

21:02

Let's just try a bunch of different, you know, appliances and see if we can get them to work rather than and it just ends up being very expensive for patients, right.

And I think that was his philosophy as well.

He was firmly convinced that the cone beam is not going to give us any data because when you're imaging the awake airway, that's not going to tell you anything.

21:21

And that turned out to be dead wrong at this point.

You know, we were, Bonnie and I were doing our functional oral and airway health summits.

We did four of them starting in 2017, which is around when I was seeing this dentist.

And I'm talking to all these people and I'm talking to, you know, people, people like Bill Hang, you know, Bill just retired face focused orthodontic therapist out in California and his perspective was the exact opposite.

21:51

He said you got to do a cone beam.

You've got to look at the airway.

Yes, the data that you give when promoting the awake airway do tell you things.

And I'm like okay, Well, my level of confidence in the dentist that I'm seeing here just dropped dramatically.

22:08

That, together with the fact that the appliance he made me basically didn't work, so then I moved.

So you've already tried.

So just to summarize, we've tried CPAP.

Didn't work, couldn't sleep with it on.

You tried these two different mandibular advancement appliances and they didn't work either.

22:27

I tried one.

I tried all of.

The only one I actually had made for me was the tap.

Appliance the tap one.

Got it and that did not work.

Yeah.

So then, how are you feeling at this point?

Discouraged.

Fed up like, well, I I moved.

22:44

I moved on to looking at OK, what else?

All right, I need to get a I need to get a cone beam.

All right.

I need to see how bad my airway really is.

So I saw another dentist, orthodontist, paradontist, who got me a cone beam and she wasn't really forthcoming about how my airway looked.

23:07

What she told me was and then again this gets into the multi factorial causes of disorders.

She told me it's your soft palate, you have a huge soft palate and that's part of the problem.

And she really wasn't focused on the airway and she looked at the airway and she said Oh well it looks pretty normal to me and I don't think that she was conversant.

23:29

She was not a dental Sleep Medicine dentist.

She's an orthodontist and a periodontist.

And you know I took that and I took that cone beam.

I think I got a followup cone beam and I sent that to Bill Hang to have him look at it and he's like, oh dude, you're in a world of hurt.

23:47

You need mandibular advancement surgery.

Still a mandibular MMA surgery, which he he is.

I love Bill, but he is firmly in the camp of Okay.

This is the only thing that's going to say, but I'm not entirely convinced of that.

24:04

But at least he told me, you know, look, your airway volume is is in the toilet here.

And that's the first time I've ever really heard that.

And you know, we met up at the 2019 Greater New York Dental Meeting.

Did your cone beam scan have like, this sort of color coding where it's like, yeah, so it's like red and tiny?

24:26

Yeah.

I couldn't see that at my end, but I think he could see it at his end.

Yeah.

And you know, of course, he's looked at hundreds of these and he was able to tell me, you know.

26:06

And So what was the next thing you were trying to get to?

You're trying to understand like what the next treatment option trying to be.

That isn't so.

You just weren't interested in the MMA surgery?

Not at that point, no.

And I went with her because she's an orthodontist and usually you have orthodontic treatment in conjunction with doing the MMA surgery.

26:28

And so that was the context in which I saw her.

You know, whatever treatment she would have to she would give me from the orthodontic department would be in tandem with what Doctor Resumova had in Saint Louis, whom they send all their MMA cases to the cuts that he would be making during the surgery.

26:47

And so I decided, okay, I'm not ready for that yet.

Let's let's just wait and see.

And that was early 2020 and I think it was in 2020 that I started looking into Inspire.

27:03

I was talking to my my friend Pat McBride, who at that point is working for Inspired.

You know, Pat.

She's been on the podcast as well.

Yeah, that's that's right.

I remember saying her name.

Yeah, Wonderful, wonderful Cheerleader.

You know, Smart.

Really, really experienced.

27:19

Really, really move her into Shaker and she said, you know you're you're getting to the point where you're you're you're hitting the last ditch effort, Hail Mary territory here.

Scott and I started considering Inspire and at that point I started getting, I wanted to get it preauthorized.

27:43

I realized that there was going to be a preauthorization process.

I had no idea how laborious that authorization process was going to be.

And that's why one of the things that Karen said struck me, struck a huge chord because it took me, I think she said she had to go through a year before she could get it approved.

28:02

It was pretty much the same with me.

And I had to go from one insurance company to the other, the one I was with at that point through the health insurance marketplace, they've let out tear me down and I renewed during an open enrollment and I picked the ball up again trying to get it approved with them.

28:19

And this was, you know, at that point I had already identified an Inspire surgeon in Pennsylvania and he was going to bat for me and he was writing a provider appeal and even that, you know, they were just fighting me tooth and nail ultimately.

So from your point of view, just to kind of clarify so.

28:40

I mean, I know my reasons why I'm not super keen to do the MMA surgery, but I just wanted to hear from you.

Like to you, you just saw the the MMA surgery is a lot more of an invasive, a much bigger surgery than the inspire surgery and you thought that that was preferable, basically, that's one thing and I know that.

29:04

I mean, let's face it out, you only hear the success stories.

I know that there are.

Oh, no, I hear all the stories.

OK, so you know what I'm talking about MMA surgery.

I mean, it's got a good success record, but there are surgeries that are not successful depending upon who was doing it.

29:21

And I also make a mistake of thinking, OK, my oral surgeon is going to do this well and any oral surgeon can do this.

No, there's only a handful of people in the world.

And also so I don't know if you heard last week's episode with Doug Tombs, but like our favorite thing is talking about what surgical success means to patients versus surgeons because often surgeons are looking at the share criteria.

29:45

So they're saying if I reduce your HI to under half.

Then it's a successful surgery, right?

But a lot of people are disappointed because they're they're left with, they're still on CPAP, right?

30:01

So it's it's like this whole thing where you just have to really thrash it ahead of time.

What does actual success look like?

Because most people I talk to patients are saying success would be a cure.

Like an Ahi under five that they no longer have to do any treatment for.

30:21

So.

And those are the success stories that you hear.

And it's like, you know she was able to throw her seat path away.

Happy days are here again singing Hallelujah, right.

It's not all like that, as you well know, right.

Yeah, so.

You went through this laborious thing to try and get the Inspire surgery.

30:41

And approved by your insurance.

And so eventually that still left me on the hook.

That still left me on the hook.

When I when I finally got it done, it left me on the hook with an $1800 copay, which I had to.

That became another monthly payment, which is another thing that I object to.

30:57

And that's one of the another one of my hesitations for doing the MMA surgery, because there's no way that you're going to get that covered 100% under your medical insurance.

And everybody I talked to, I get the same number.

It's going to be like $50,000 out of pocket.

31:15

And they, they don't make the case, you know, well, how important is your life?

You know, yeah, you should take a second mortgage on your house to do that.

And I'm like, that's total BS.

I'm not going to do that.

Plus, I think sometimes we overlook the fact that for a lot of people, for honestly most Americans, that's not doable.

31:36

Right.

Like we're, you know, like I I think it's just an unbelievably privileged position to be in to even be saying like, Oh well, but if if it's important to you, you'll find the money.

There's plenty of people where they live, paychecks, paycheck, they have no savings.

31:53

So they literally, you know, might not even have credit.

So, yeah, it is.

It is a really big, you know, element to that that I think sometimes we gloss over.

So yeah, that's that's that was my hesitation too.

So I got the inspired surgery in March of 2021, a really, really good, very nice, very caring young ENT surgeon in the Reading, PA area, Dr. Adam Vasconceles and very again, very caring, very competent.

32:26

He did the surgery and this gets back to what we were saying before he was he looked at well when we got done with the surgery Okay, I have outstanding tongue movement which means you know the hydroglossal nerve lead is is working okay fine.

32:42

And like your other guest, I had the three incision procedure which of course they're not doing anymore.

And it's my feeling that that respiratory sensing lead that was put in through this incision may not have been working properly from the beginning because I started to in in in the middle of all this amount.

33:05

Bonnie and I moved from Pennsylvania to Florida and we were, you know, U-Haul trucks and multiple storage lockers and staying in an Airbnb before and finally working in a very fast real estate market and finally, you know, buying the house that we have now and moving boxes and whatnot something could something have gotten knocked loose maybe.

33:25

I have a feeling that there was there were problems there that I just didn't see because there were other life factors that were distracting me.

I.

Well, plus, honestly from a patient point of view, you kind of expect the thing to work, you know what I mean?

Like you don't really like I think sometimes.

33:44

You know, you look back on things and you think, well, why didn't I notice that it wasn't quite right?

Well, it's because you're expecting it to work, right?

So you kind of think like, oh, it must just be me, that it doesn't feel quite the problem.

The problem was that I have insomnia superimposed on that.

34:04

And you know, obviously I don't know how well I'm breathing while I'm sleeping, and I have not been really working with the Inspire app, so I have not been really doing the data collection thing the way that some other people do.

34:21

So the comorbidity of the insomnia has been a real stumbling block for me.

So I connected with the Sleep the Inspire folks in the Tampa Bay area, headquartered at 10.

At this point you're you are using it though at night at this point I had the I had been using the Inspire.

34:40

It was placed March of 2021.

It was turned on.

I think it was six weeks later.

Tell me about your experience after it was turned on, OK?

But you're kind of ramping up the ramping it up basically?

Understand it just from Karen's story, but right, right.

34:57

And you're supposed to ramp it up.

And again.

Then Karen made this point to the the settings can be tweaked nine ways to Sunday.

As far as what you're seeing on the inspired sleep remote may mean a number of things, depending upon how they've got it calibrated and what voltage is associated with what setting, and adjusting it to make your tongue do what they want it to do.

35:22

But which is we should?

Just say for people who are brand new to even, and I always assume lots of knowledge and then people go, what are you talking about.

But the inspire implant, I'll just briefly explain, has a sensor in your chest and then that tells and it whether you're breathing in or not.

35:44

So when you breathe in, the sensing leads up to your hypoglossal nerve will.

Then tell it to move out of your airway.

Essentially that's the stimulation, the stimulation lead, which has the cuff around the hypogloss and nerve.

That is like the.

36:01

That's the equivalent of stimulating a motor nerve.

It senses your breathing and then accordingly.

Or moves your tongue, moves your tongue out of the way.

So I went to have an interrogation, several interrogations.

36:17

And the interrogation is what the Inspire folks call, you know, testing your device.

You go into the sleep positions office and they run all kinds of electronic tests with, you know, the Inspire proprietary Inspire equipment from the company.

And I did that once we got settled and I went in to get why.

36:36

Because you weren't immediately feeling better, right?

So you're like, let's figure out.

Yes, like what's happening.

Yes, Yes.

I wanted to.

I wanted to get a baseline.

I wanted them to look at it and OK, you know what?

Where are we at this point in time?

36:52

And the team started getting readings that were not right, that were suggesting to them that there was maybe some kind of a leak or that the leads were not functioning properly.

And Long story short, that turned turned out to be true.

37:09

And I found out on a series of CT scans that one of the leads had become disconnected and I had to have inspired revision surgery which I had in September of 2022 at Tampa General Hospital and.

37:27

So what level of fed up are you by this point?

I was like at this point, you know, I'm like okay, I'm, I've got my sleeves rolled up.

Listen, I'll do whatever it takes.

Okay, we need to revision.

All right, let's let's just get it done.

So I had the revision surgery by Doctor Padya at Tampa General who was basically the inspire king of the Tampa Bay area.

37:51

It's done over probably 300 procedures at this point and he was when he was trying to get the old respiratory sensing lead out through this incision.

Here he got the lead out but it either then became disconnected from the the lead head which is a piece of metal inside the chest and the the lead head stayed where it was and the lead came out and he could not get the the lead head out and he was reluctant to go digging for it because he was afraid of giving me the pneumothorax which you don't want to do.

38:27

In in the midst of inspire surgery which does not enter the chest cavity.

You poke a hole in the chest cavity.

The air comes into the chest cavity and that's the pneumothorax which is no bueno.

So he left it in there which was the right surgical decision to make.

So that also left me with the the dilemma of finding another surgeon that could evaluate whether it was worth going after this thing and if we needed to do it.

38:53

Luckily, I connected with Dr. Jonathan Daniel, who was a recent transplant to the Tampa Bay area from Anchorage, AK, of all places.

Wonderful, wonderful guy.

Really excellent cardiothoracic surgeon.

And it's worth saying to people listening that you do have a bunch of really great videos.

39:12

About your whole journey with this on and your YouTube channel, So we'll link to that in the show notes so that people can actually go and watch.

Because that was the point where I was just all in.

And like, are they going to find this thing that's floating about this body?

39:28

And it kind of shows the scans where you find out where.

It was and it's by way of clarification.

It's not on our YouTube YouTube channel.

It's on our website.

Got it.

Which is healthymouthmedia.com and you want to click on the the tab that says my implant for OSA and then you see all 28 videos and you can watch whatever ones you want.

39:50

And you know if you really want the the dramatic build up to whatever De Nu Mont you want to describe it as and numbers probably 20232425 through 28.

I go through a whole bunch of stuff.

40:09

So.

But the short version is they did retrieve it.

Yes, I had a five day stay at Tampa General Hospital and Doctor Daniel was able to retrieve it and he took some some photographs.

Have you still got it in the jar?

40:25

I've got, I've got it right here.

That's, that's the that's the lead head just rattling around there.

I'm saving that for austerity.

I may hang it on the rearview mirror of the carb.

I haven't decided yet, but it it was out and we decided okay is this worth the risk of doing a a thoracoscopy which is what this procedure is called, which is you know putting a camera into somebody's chest.

40:50

And I had to get a follow up CT scan which told Doctor Daniel and me that this thing was indeed migrating and it was going progressively South and where it finally settled was inside my chest cavity at the top of my diaphragm attached.

41:09

To the pleura, which is the membrane that that goes around the lungs and he said Okay, you know if it's not moving, we're going to leave it where it is.

If it is moving, then we got to go in and get it and it turned out it was moving.

So we needed to do the surgery.

41:26

So that was a five day stay at Tampa General Hospital.

Two of the days, 2/2 of the days following the the surgery were in the ICU.

And you know I told a bunch of I tell a bunch of stories in the video about my experience with that.

41:42

Not all directly related to the inspire, but helpful hands as far as you know what you want to do, what you need to know if you're going to have an extended hospital stay.

Because there there were things, things that happened that I did not anticipate, not the list of which was they did not give me my regular blood pressure medication.

42:01

They substituted something else which didn't.

Go well in adverse adverse effects, so that's all in the videos too.

And they're all on the healthy mediamouth.com.

Website then once you so you got that piece taken out, you've got, you've had your revision and then.

42:20

Did you know it's improvements to your sleep?

Or you know like what was happening with the Inspire implant?

Was it helping you or or not as much?

I I I think it is helping.

And I'm thinking after the revision surgery I did notice something of a difference.

42:40

You know, again, this this is not like night and day.

It's continuous source of frustration for me.

You hear these wonderful blue sky stories, you know, Oh well, I got this and it's like night and day.

Hallelujah Now I I have seen the light.

I have been transformed.

I haven't been transformed yet.

42:56

Emma, was it better?

Subjectively?

Yes, I think so.

And subjective interpretation of how why you're sleeping is important and you have to you have to look at that And I've seen that the your doctors and the Inspire folks say that that's important too.

But dramatic improvement probably not dramatic.

43:15

There was improvement after the revision surgery.

Well, I think if it had like, I hope that it helps for you to feel less alone.

But those are the stories I hear the most often, right?

Of people who there are people who, you know, wear CPAP one night and wake up the next day.

43:34

Like, this is just amazing.

And I feel so much better.

But those people don't listen to my podcast because they're just going about their lives, right?

So most of the people I hear from are people where they're like, well.

You know, I think it is helping some.

It's not perfect, you know, like, so I think there's a lot of us trying multiple different angles to figure this whole thing out.

43:57

Right.

And and that's one of the things that makes this podcast such a valuable service.

And you're you're allowing people to tell their stories and a lot of them are, are not rousing success stories.

No, this is, this is the journey.

You've you've got your journey out there.

This is my inspired journey and it's, it's been it's been a rocky road.

44:16

I mean, I'm in it for the long haul.

I'll do whatever I need to do, but there have been bumps along the way which is what led me to to shoot this this video series and I just I hope it it will help people.

Well, I think it will like just people who are in similar situations.

44:34

OK.

So one thing that you wanted to just mention was about the Myo Munchie, correct?

This is a device that's out of Australia.

It's mainly for kids and this is the mini mini Myo munchie and it's gone through several iterations.

44:52

I've been using this since 2019 and I use it for two purposes 1 to keep me from ruxing at night because I have history of bruxism.

It goes in like this so it keeps your teeth from colliding or occluding during the night and it also usually stops my snoring and and what I do is.

45:13

Keeping your mouth closed, right?

And I use paper mouth tape over the Maya Munchie and I think that helps me to breathe through my nose.

And as you know, nasal breathing is is critical.

That's that's something that the medical community has yet to catch on to.

45:31

But you know, we're working on that.

But what happened with my last home sleep test I the PSG in December and the last HST that I did 10 days ago, I had my mind munching in and I had the tape over it.

I poke a hole through it and I broke the handle through the tape.

45:50

And my current sleep doctor is concerned that, well, maybe the Maya munchie is getting in the way of my tongue and the inspire can't make it protrude and that's why my AHI has gone up.

So I don't know if that's the case.

We've got to continue collecting data and I'll keep you informed.

46:07

And, you know, maybe we can talk about that when we know more.

Yeah.

And so the other thing that was really interesting was you were talking a little bit about.

So I didn't realize from the videos what you said earlier in our conversation about that you had actually gone through a bunch of CBT and earlier and so, but which hadn't really helped you.

46:31

Because I think one of the things I was going to ask was, had somebody said to you like maybe try CBTI for the insomnia part of it, but it seemed like.

You had already done the counter behavior therapy and so, so the CBTI didn't seem appealing.

46:47

Maybe I had had a fair amount of CBTI starting with various therapists starting in 1995 off again on again and then from about 2003, 2004 through 2009, 2010 and it was basically talk therapy.

47:05

It was basically a conversation.

Was it helpful?

Maybe.

Again, there was not a dramatic improvement.

And the first sleep doctor that I contacted when I moved to the Tampa Bay area was she gave a very regimented approach.

47:23

Okay, these are CBTI therapists that you should contact to get into.

You know, get into, you know, towing the line and you have to do the sleep hygiene thing and use your bed only for sleeping, only for sleeping or sex.

Nothing.

Else, yeah.

So tell me about the So this is what's super interesting to me.

47:42

Tell me about because you went to this doctor and she's telling you, you know, try these sleep hygiene things to help your sleep.

But so why are you resistant to that?

It just doesn't.

It just doesn't seem like it's going to help.

47:58

Or it just isn't.

Doesn't fit in with your lifestyle or what was it about that you didn't like all all of those things to varying degrees.

I look at bedtime as something where I I'm I can relax, there's there's no pressure.

48:16

I I need to wind down.

I like to read in bed, Of course.

When you do the sleep hodging thing while reading is verboten.

You, you, you can't eat.

Of course I I I'm a night eater.

I don't know how many night eaters you talk to, but that's something that I've done since I was a kid.

48:36

And, you know, it's kind of a veiled hint now.

Shame, shame.

You can't do that.

You know what?

What?

What are you doing?

It's it's a form of addiction, is what it is, and it's very under research, so that doesn't fit.

A bunch of things just just do not fit.

It's kind of like CPAP.

48:53

CPAP interfered.

Not only it didn't work, it kept me awake, kept falling off.

That alone was a disqualifier, but it also made me think of going to bed as something that's okay.

Well, I need to step into hell again.

I don't want to look at bedtime as hell and that's one of the main reasons why the CBTI thing doesn't work.

49:15

And I think psychology in general places far too great an emphasis and far too great credence on CBTI as being the gold standard of psychotherapy.

Much in the same way that the CPAP industry applies the the term gold standard to CPAP therapy, which I personally believe is a misnomer and I think is largely taken out of context, especially in view of the the stories that some of the people in your podcast are telling.

49:47

So what that's worth?

So so did you.

So you just decided that wasn't for you?

So you didn't try doing the sleep hygiene thing for a while?

Or you just didn't.

You just thought I tried listening to things.

There's a binaural binaural beat type of audio that was put up by a guy named Bill Harris.

50:08

He's Center Point Research.

I think it's his company.

He's dead now.

I don't know if his kids have carried it on, but it was customized.

And you just, you put your earbuds in and they're like, you know, whooshing sounds and water sounds with the subliminal things going into your ears in a binaural bead.

50:28

I've used that on and off over the years.

I've recently picked up using it again, and I think it's helping.

I do it in the morning because every morning, Emma, I wake up with anxiety and I need to.

Wonder Yeah, I need to do something to take care of this anxiety.

50:45

And Holosync, it's called Holosync helps with that.

I also use a series of audio meditations put out by a company called the Tapping Solution.

I don't know if you're familiar with the FT Tapping Tony taught me that when we first met in 2009.

51:05

And without EFT tapping Emma, I would be we probably wouldn't be having this conversation.

It's acupressure.

You tap on acupressure, Meridian points while you know going through, you know whatever your trauma, whatever your negative thing is, you flip it from the negative to the positive and you you you whittle away at deprogramming whatever is making you anxious and.

51:29

You're not going to.

So you probably don't love that they have an app, but like, they have a really great app where you.

I use it.

Yeah, I have it.

So that's quite I find that quite helpful.

Just because that's where I that's where I get these meditations.

Yeah, and I signed up for IT access for a year.

51:45

You pay like $70.00 or whatever and you get access to over 500 meditations.

Really helpful.

Just you, you were kind of like giving it a number, like how anxious are you feeling, you know, out of 10 and then you go through the simple tapping.

52:03

Thing for a while.

And if you're anything like me, you're you're really, you know, skeptical that it's going to work for the first like few times.

But then sure enough at the end it says now give it a number and you sit there and you feel your body and you think you know it's actually lower.

52:19

I feel a bit less anxious, so I think the more.

That it worked like that.

The more I've got tremendous.

I've got considerable experience with tapping.

Well, Bonnie taught me EFT.

She worked with some of the some of the people who were I think colleagues of Gary Craig, who who adapted it from Roger Callahan, the the thought field therapy, but in the early to mid 90s.

52:42

And I actually had a view at one point to becoming an EFT practitioner and I took up through the Level 2 certification.

So my familiarity with EFT tapping is beyond what most people who tune into the tapping solution would have.

53:00

So oh, I'm a believer that by far has been the has shown the greatest degree of success in everything that's going on with me, including you know Bonnie and I are now tapping on trauma and kind of easing to the surface whatever trauma from childhood or whatever I have yet to deal with.

53:20

And it's it's the steadiest performer that I've ever had, way, way beyond what CBTI has ever.

Your CBCBT has ever done for me.

The other thing I was going to ask you about was, so you find CBD helpful as well.

53:37

Yes.

And that's CBD stands for cannabidiol, which is the cannabis derivative, you know, without the the Delta 9 component, which and some of them do use the Delta 9.

Bonnie and I were both using that for a long time.

53:53

We were using a particular, particular brand, which it's in the video if you want to see it.

I'm not going to mention it now, but I had to get, I had to get off my vitamins when I went into the hospital.

54:09

So I stopped that.

I stopped vitamins except for vitamin D and you know, multivitamin.

And I decided to try everything that I was doing, you know, without the CBDI were you're chewing gummies.

54:25

I was taking a CBD liquid and I was convinced that it was helping me okay, let's try it without and let's see if I feel better or worse without it.

And I found after I'd stopped it and been without it for say, a month, I thought, you know, I really don't feel any different And you know, I'm spending two $300.00 a month on this stuff.

54:47

That's a considerable expenditure.

And if I really do without that, and I haven't taken it since, and I would say all things considered on probably doing better now than I ever have been once it gets fire fixed, once I get the lead head out of my chest and continuing to tap and Next up for me, I'm not sure if you're familiar.

55:10

With that was gonna be my next question.

What's the eye movement desensitization and reprogramming theory, which is supposed to be really good for trauma?

Is it EMDR?

EMDR.

I think.

I'm not sure.

I don't know whether I knew, like, what EMDR actually stands for, but that's OK Yeah.

55:29

And I don't.

Know the MDR is supposed to be tremendously helpful for people with trauma.

So I've read yeah, most conspicuously in the book.

The New York Times bestselling book by Doctor Bessel Van der Kok, The Body Keeps the Score tremendous book.

55:48

I highly recommend it.

It tells some really intense stories so it is not for the faint of Lord.

But he learned EMDR relatively late in his career and he was introduced by by one of his patients who was horrible trauma victim and use that to get back on her feet and actually went on to become a family therapist.

56:09

And he connected with her years later and she's she's happy and she got through and she's recovered and integrated her trauma.

And he said I think it's time for me to get trained on the MDR and he did and now he's having tremendous success with it in his practice.

56:27

So you know my.

It will be so interesting to hear.

I hope we just stay in touch.

And because it will be so interesting to hear how much of an impact that has on your sleep quality like you know like really getting to the root of that and and treating the trauma and just kind of seeing.

56:49

And and again I can't emphasize enough, I mean the combined therapy, I mean Bonnie and I are still going to be continue to tap doing the emotional freedom technique.

And I think it's, it's probably useful to point out here that EFT tapping EFT stands for emotional freedom techniques when you're looking at the APA quote UN quote gold standards of psychotherapy.

57:16

EFT stands for Emotionally Focused Therapy, which has nothing to do with Meridian and tapping.

So that's a very a very important distinction to make.

And confusing for patients, yes, When you're looking for for a therapist, there are therapists who do emotional, emotional freedom technique and that some of those very same therapists do emotionally focused therapy, which is completely different.

57:40

And I thought I I had my EMDR therapist all lined up and we turned out to be mutually unsuited.

That's a long story which I won't go into here, but.

I've got a couple more things for you really quick.

57:58

So one of the things that was interesting on your video to me, and this I think is fascinating because so many people I've talked to you have had the same situation where they've actually had like a much higher Ahi on their back.

58:15

And either their doctor hasn't told them that or or they just haven't realized that positional therapy of like sleeping on your side is potentially really helpful.

And so that certainly was the case for me.

And and you know, it's definitely helped me to sleep on my side versus my back.

58:34

So I wasn't sure whether from the video whether you just find out that that was?

An element of what was happening or whether you actually went down that route and you know, I don't know, got one of those slumber bump things or a pillow or did you do anything with that or not really never to that extent.

58:53

However, during my last PSG at Tampa General Hospital in December, my sleep tech was looking at the readings and he said, oh by the way, whatever you do, don't sleep on your back because supine I I got the crappiest readings, crappiest readings of all.

59:11

I must point out that during that polysonogram, the last one I had in December 2022, I came in with an AHI of three and the the real contrasting thing to bring us up-to-the-minute.

I just had a home sleep test about 10 days ago and that returned an HI of 35.1.

59:32

So now I'm really confused as to what's going on.

I don't know and I'm doing this with another sleep doctor in the Tampa Bay area and we're reevaluating and they recalibrated my inspired device to the point where, well first of all it centered my tongue and they essentially lowered the voltage output to the point where I can Now I can barely feel it when I turn the inspire on and quite frankly at this point I don't know whether that's helping or not.

1:00:09

So the plan now is to do a follow up home sleep test and see where we're at and maybe another follow up PSG down the road.

So.

And maybe another follow up interview for us The road.

I'd be happy to cuz I feel like happy to.

I mean certainly with my own journey as well.

1:00:26

I feel like it kind of is never ending.

So and you gotta like anything.

You gotta you gotta keep trying new things until you find what works and sometimes.

The the progress, it's, you know, it's the it's the the short pass rather than, yeah, the Hail Mary pass for the sometimes it's two steps forward, one step back.

1:00:46

Oh, yeah.

Then you know, Yeah, for sure.

Well, listen, this has been an absolute delight for me.

I'm so glad you're able to join me.


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