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133 - Dr. Pam Sheets - Finding a Sleep Apnea Cure with EASE

Pam Sheets

Emma Cooksey: [00:00:00] Thank you so much for joining me.

Pam Sheets: Absolutely, happy to do so.

Emma Cooksey: So tell everybody listening a little bit about your background. So I think that you, you're retired now, but you were a doctor.

Pam Sheets: Yes, I practiced rheumatology for over 20 years, and I retired 8 years ago now.

Emma Cooksey: Okay, great. And so with your own journey, take us back to when you first noticed that maybe there was something going on with your sleep. do you, in retrospect, recognize earlier in your life that you might have had problems, or when did you first start thinking there was an issue?

Pam Sheets: Well, I, I always considered myself tired. And yet, people say I'm very energetic and I get a lot done. So there was always this mismatch between what my symptoms state was and what other people observed. And to some degree, that [00:01:00] feedback, that external feedback made me think, well, I, I just. There's something just wrong with my sensors.

I, I must not be tired. But every year at any kind of exam or medical exam where I might have lab tests required, I would always request a thyroid test. It's like, it's gotta be my thyroid. Right. And I have a family

Emma Cooksey: That's such a common one. I feel like almost everybody I've interviewed has had so many thyroid tests.

Pam Sheets: And so I, I kept thinking there must be a reason, but I never really got any answers. And I, I would suppose most of my life I was aware also that I had some sort of breathing issue I thought must be allergies. My family does have a lot of allergic issues and sinus problems. You know, the point of having,allergy shots and desensitization.

So I thought, okay, then it must be that because I could just not breathe very well. And I was one of those people [00:02:00] who every morning will wake up and sound like a goose. I was honking, you know, trying to clear my nose, clear my throat to the great, annoyance of, my college roommates.

It's like, stop making so much racket. And I just kind of came to accept that, this was it, I eventually saw an allergist. In my clinic, when I said, okay, all right, I'm ready to deal with this, and he assured me I had no allergies, but go ahead and keep taking that, inhaled nasal steroid, go ahead and keep taking the decongestants and antihistamines, and then, yes, long term, years, and I got an apparatus to clean my nose, you know, a nasal irrigation thing, and I had saline setups, and none of it made me breathe better, feel better.

or seem more rested. So I think it was insidious, you know, probably from, I mean, I really didn't pay attention to it until I probably was,in my 20s and began to just recognize these things and [00:03:00] constantly complain. My husband says, I married her and she was tired then. She's always been such, she's tired.

Emma Cooksey: Right. I find it really interesting how much we just make do with what our symptoms are. Like when I look back on myself in my 20s with undiagnosed sleep apnea I just kind of managed through my life, even though really now I'm realizing I was really very tired all the time.

So did you notice that you were having to do things to kind of accommodate, were you napping or you just were tired and getting on with everything you had to do?

Pam Sheets: I think I was the sort of person who just made myself push through it, but I mean, every vacation I ever took started with me just sleeping forever. You know, I'd just lay down and give in and people would comment about it. I met my husband's family, and I remember going to visit and I said, [00:04:00] do you mind if I take a nap?

And I went upstairs into my now sister in law's bedroom, and I just disappeared. And she thought there was something really weird, like, what's wrong with her?

Emma Cooksey: Yeah, no, I relate to that so much. And so at that point though, you're not thinking, were you thinking that there could be something wrong with your sleep? Did you know anything about sleep medicine as a specialty? I find that super interesting because you're a doctor.

Pam Sheets: Right, well, you know, there's There's traditional training and dogma, and in my era when I learned about obstructive sleep apnea, it really was just The big, large, overweight, short, stocky neck guy, that's what slLi apnea was. It never occurred to me that somebody who was, normal weight or just not obese would have this problem.

And so I bought into the [00:05:00] fact that it was just me. I can't possibly have a condition. I mean, again, I considered allergies and I considered thyroid because those things were acceptable for somebody of my build and gender

Emma Cooksey: But not a sleep disorder of any

Pam Sheets: Never a sleep disorder, no.

Emma Cooksey: And so, then, when did you start to kind of learn more? Like, at what point did you really seek treatment around the sleep apnea? Did you get a diagnosis with a sleep specialist, or how did that come about?

Pam Sheets: Well, I, I was just fortunate to come across James Nestor's book, Breath. You know, it was, I think, in 2021. And after reading the first chapter, I just thought, that's me. He's me. What did he do to get better? And about And so I immediately started taping my mouth at night trying to be more healthy to breathe through my nose and it wasn't easy but I [00:06:00] persisted

could you breathe through your nose? some but you know it wasn't uncommon that one side of my nostril would block up and I'd have to turn over to try to you know relieve it and then turn over the other side so I accommodated to it and yes I could breathe some but I think I was So used to not understanding that my breathing through my nose really wasn't breathing through my nose, you know, it wasn't, it wasn't always a hundred percent occluded, it was just always, I had to try really hard, you know, to breathe through my nose.

And so you read James Nestor's book and that started you on a sort of journey to, did you recognize what he was talking about in terms of like orthodontic treatment and that kind of thing? Well, I, I thought about it and I knew that, I'd had four teeth removed because my mouth was too small and my orthodontia was completely retractive, everything was pulled back. I had headgear but I remember it was so traumatic. [00:07:00] I went to the orthodontist on my break and I was in 7th or 8th grade and he introduced this idea that I'd have headgear and I was a very compliant person and I tried to smile through it, thank you doctor, and I said, so when do I wear this at night?

And he said, Oh no, Pam, you need to wear it 24 7. And I went back to class with my headgear on and it was probably one of the hardest moments of my teenage life. And I did it, you know, and I did it for over a year, 24 7 having this thing pull my

Emma Cooksey: Everything

Pam Sheets: mouth, my face, everything back. And, and so yes, I definitely, it resonated with me.

The orthodontia, made it more complicated for me to breathe. But, but I didn't really put it together until I heard James Nestor speak on a panel at an online conference. I was attending on this. thing called [00:08:00] Feldenkrais. And one of the panelists with him mentioned a book Jaws by Sandra Khan and it just expanded on what he introduced in his book into the relationship between maxillofacial anatomy and breathing trouble.

Emma Cooksey: And that's where it really hit me that man, I should try to see if I can correct any of this with some sort of dental appliance. And so, so you didn't go and have a sleep study.

Pam Sheets: No. In fact, I resisted it. I was like, I can't have sleep apnea, I

Emma Cooksey: Tell me, tell me why you resisted. It's super common. I just want to try and understand why.

Pam Sheets: Because, you know, again, the image I had from my training, my medical training, was that if I had sleep apnea, I would not just snore, and my husband said I snored, but it didn't really bother him, so I thought it wasn't bad. But you had to have these gasping,apnea episodes where you would just not breathe at [00:09:00] all and then gasp and gag and start breathing and wake yourself up and he said, I never did that.

And again, my image was it couldn't possibly be somebody with my build. And in

Emma Cooksey: though you were having the sleepiness, were there other symptoms that you had that you now realize were related to sleep apnea? Did you have morning headaches, or?

Pam Sheets: I didn't have headaches, but I tell you, I used to, especially when I traveled, it's like, I have to have my coffee now. Starbucks was like the generic, it's everywhere, right, so I could get one there.

It's like, I need to go there first, you know, I just had to have

Emma Cooksey: just relying on caffeine to make it through.

Pam Sheets: yes.

Emma Cooksey: can relate to that, for sure. So, who did you go and see? Did you seek out an oral and maxillofacial surgeon, or was it an orthodontist, or a dentist? Who did you go and see?

Pam Sheets: Well when I read the book Jaws, I thought that for me the homeoblock device might be the [00:10:00] best. And I contacted Ted Balfour's office in New York by email. They were very nice to respond and referred me to a general dentist who has really made her practice specific to breathing issues in my area.

And I thought, okay, she's been trained in it. I'll go and I'll ask for a homeoblock. And she insisted that I have a more full evaluation, comprehensive with CT scanning, a take home device for, you know, sleep abnormalities.

Emma Cooksey: so did you, so you had a sleep test at that point.

Pam Sheets: Yeah.

Emma Cooksey: Yay! I knew there must be a sleep test at some point. Okay, so she sent you home. She did a CBCT scan to look at your airway, and she sent you home with a home sleep test. And what did that show?

Pam Sheets: Well, it suggested I had, you know, I'd have something. Her, her screening modality isn't diagnostic and [00:11:00] or sophisticated, but it was enough to suggest I have a problem. And she thought it might be airway resistance syndrome

Emma Cooksey: what did it look like? Okay. Maybe a pulse

Pam Sheets: I'm trying to recall that I think it was, you know, I it certainly wasn't the wrist watch pat thing that I had with my sleep doctor eventually.

oximeter, just to

I think it probably was just. An oximeter on my finger, yeah.

Emma Cooksey: and so then what did she suggest having looked at the results of that and looked at your CBCT scan? She said she thought that you had an issue and then what did she suggest in terms of treatment?

Pam Sheets: Well, I, I was a little flabbergasted because she diagnosed many different things wrong with me, and I think, to her credit, you know, she's honing in on this problem, but I think she's just developing her comprehensive approach, and so what came back to me was a multi page report that I [00:12:00] was, had a lot of problems, and I would need like 30, 000 to 40, 000 worth of surgery, and I would need to see two or three consultants, and I, and I, and she came to give me this information when she had just done.

A surgery on an infant who had a tongue tie and it didn't, wasn't going real well and there was screaming and a baby that needed attention and so she just kind of threw it in my lap and said, you have some problems, let me know if you want to do anything. And so I, with all of that, I, I didn't have a full understanding of where to go so I just took it and went, I'm getting out of here.

And I, I

Emma Cooksey: can be really overwhelming. I think that it's such a new area, this airway dentist realmI think sometimes it can be quite overwhelming, Especially all the different modalities that they want you to do. I don't know what yours said, but I'm assuming like myofunctional therapy and yeah, all sorts of different things and you've never heard of this and you're like, good grief, this is a lot.

So you went home and you [00:13:00] had a look at that report and what did you decide?

Pam Sheets: Well I knew I wasn't getting a homeoblock, which is what I went for, and at the same time, it just happened that my dentist, I needed a new dentist. And was establishing with someone and I thought, well, I'll just ask her advice. Like, I've got this ream of data. How do I approach it? And she sent me immediately to an orthodontist in the area who has a lot of interest in the airway issue.


Emma Cooksey: sounds like you have a lot of really great providers in your area, which is good.

Pam Sheets: I'm so lucky. It's true.

Emma Cooksey: because a lot of people listening, I do get a lot of emails and direct messages from people in other countries and also just in places in the United States not close to bigger cities that really don't have access to a lot of these specialists.

So I think that that can be frustrating for a lot of people. So you went to see the orthodontist with an interest in the airway,

Pam Sheets: [00:14:00] Yes. And she, she told me that, you know, that I clearly had an anatomic structural issue of a too small mouth and that I should strongly consider, oh, well, no, sorry. I have to back up. Sorry about that. She insisted that I, she insisted I get a really good sleep study and talk to a sleep specialist

Emma Cooksey: I love her.

Pam Sheets: yeah, I needed to first understand what kind sleep abnormality I had.

Emma Cooksey: Yes. And the severity of it.

Pam Sheets: Yes.

Emma Cooksey: Yeah. So, so you went from the orthodontist to a sleep specialist

Pam Sheets: Yes.

Emma Cooksey: and then you had, was it an at home sleep study or an in lab sleep study that you had?

Pam Sheets: It was at home. It was in 2022, sort of in the middle of COVID still. And so I did a watch pat study and yeah. And the sleep [00:15:00] specialist.

Emma Cooksey: it? It was okay? You just slept in your

Pam Sheets: Yeah. It was so easy. It was so easy. And I had more confidence in this one. So I was willing to, you know, give it more.

Emma Cooksey: Yes.

Pam Sheets: Consideration.

Emma Cooksey: Okay. And so then you went back to the sleep specialist to get results.

Pam Sheets: Yes, I had results within a day and it, I had clear sleep apnea. It wasn't anything less than that. And it was mild to moderate depending on the criteria used for desaturations. And

Emma Cooksey: they'll use 3%, sometimes they'll use 4 percent and it depends.

Pam Sheets: yes, that's exactly it.

Emma Cooksey: Yeah. And so at that point, what did you think? Were you still at this point thinking, that's not something that I could have? Like we talked about, or by this point you're like, there's something going on.

Pam Sheets: I knew there was something going on then and I, I guess I was ready to, to face it. I, luckily in my institution the sleep [00:16:00] doctor I was referred to had practiced there at, you know, a point in time in her career and she was highly regarded and I, I just, you know, I had complete trust that I needed to work with her on this.

Emma Cooksey: Yeah. So what did the sleep specialist recommend in terms of treatment?

Pam Sheets: Well, once she conveyed these results to the orthodontist, I had a more, you know, important session. And I, I think this, what's surprising to me is how well Remote consultations work in this area because I, I didn't actually see any of these people in person. And so for, yeah, so for the person who feels there isn't anybody in their area, they can get a lot accomplished working remotely.

So I just want to throw that out there.

Emma Cooksey: even if people, we, we talked a lot about this with one of the doctors I interviewed recently where even, you know, some people, you might have to be in the same state, but even if [00:17:00] you're in a rural part of your state, there's probably somebody in a major city in your state that you could do telemedicine with.

So that is a really good point.

Pam Sheets: So, yeah, I just throw that out there because, I mean, you know, the, the, all of what you're doing is so important getting the word out. You know, and so, I just want to have people not feel that because they're not in my city or another metropolitan area, they can't get help. And, in fact, as I said, I didn't see anybody in person until after I had all this data collected and then went to see the orthodontist who was very clear

Emma Cooksey: thinking you had to do the CBCT scan in person, right?

Pam Sheets: Yes, that, yes, yes, yes, I'm sorry,

Emma Cooksey: But otherwise, the doctors, especially with, with, that's one of the really nice things about WATCHPAT and other home tests, They really can do it all by telemedicine because they can send you that test to your house and you can just do it and send it back.

So, yeah, that's ideal. And so, you, [00:18:00] so sorry, I lost the track, you, you

Pam Sheets: that's all right, so I,

Emma Cooksey: of that sent back to the orthodontist, was that right?

Pam Sheets: correct, and so once she knew I had significant sleep apnea, she really honed in on what kinds of approaches could give me the best result in correcting the anatomic defects. And there's only one way to do that in an older person of my age. And that is with some kind of surgery. So she wanted me to strongly consider some kind of surgery.

Emma Cooksey: so she didn't, so this is super controversial among dentists right now where there are certain dentists who will say that homeoblock or vivos, these removable appliances, could potentially work in an adult, but she was not on that camp. She was saying in order to actually split your palatal suture, surgery would be necessary.

Pam Sheets: [00:19:00] That's correct. And I, you know, part of the problem is in adults, you know, you can manipulate the maxilla and the palate, the upper part of the jaw, but the lower jaw really only, you know, grows on its own, you know, in young adult years. And some of those appliances used to help the upper jaw make the lower jaw problem worse.

and may retract it further. So it's a really, I think you have to be very, my sense in my journey now is that you have to be very careful with these oral appliances in adults. I can only speak to, you know, my situation.

Emma Cooksey: speak to my own experience of having spent 15 months and a lot of money on vivos appliances and having them fail. So, and I've certainly talked about that on the podcast. there's a lot of responsibility on the patient to have to really do their job. due diligence and and really research what they're looking at and [00:20:00] the different providers and it can be kind of a minefield to be honest surgically assisted palate expansion as a whole there seem to be so many acronyms so Did she recommend different things or she went straight to the ease method of doing it?

Or, or how was that? Did you do a lot of research on your own?

Pam Sheets: Well I knew that I wanted to get a variety of opinions, or at least a couple of opinions. And I asked whom she would recommend, whom she trusted. She gave me a name, and I also then asked my sleep doctor for a referral. And she gave me a name.

Emma Cooksey: So was that an oral and maxillofacial surgeon, or That was an orthodontist or a dentist that specialized in surgically assisted pallate expansion.

Pam Sheets: An oral maxillofacial surgeon was the first choice by the orthodontist and in part this is because I said at this point in my life, I'm willing to travel and I have the means to be able [00:21:00] to pursue, the highest level she would recommend. Both doctors did say there were local orthodontists and You know, variety of different kinds of surgeons, both ENT doctors and maxillofacial surgeons, who could do some of the procedures, but not all of the procedures that might be available.

Emma Cooksey: Right. And so, which procedures were you specifically talking about at the time?

Pam Sheets: Well, initially I was very excited about having a double jaw surgery, an MMA, because I thought I had so many defects that this is the only way that I might. Perhaps be able to not have sleep apnea and maybe not need CPAP?

Emma Cooksey: Mm hmm. And so, we should just say did, did the sleep specialist want you to go on CPAP in the meantime, while you were figuring this out, or? She was happy for you just to go and figure out some sort of surgery.

Pam Sheets: I, was on CPAP, so [00:22:00] once my sleep doctor said, yes, you have a problem. You really should be on CPAP, pam. I ordered the device. It took a while to get at the time, but it's the first night I wore it. I wore it all night and I wore it every day and every night.

I never took it off

Emma Cooksey: You're a rule follower. We're the same.

Pam Sheets: It's like if I'm going to do this, I'm going to do this.

Emma Cooksey: Right, I want an A and how did you find it, though? Like, like, did you adapt to it well, or did you have problems? Or it didn't

Pam Sheets: I hated it.

Emma Cooksey: just decided that you were just doing it. Okay, so you hated it, but you just decided you were doing it because you've been told that was the right thing for your health.

Pam Sheets: Yes, and I was hoping I might feel different, but honestly. I didn't feel different at

Emma Cooksey: super common. Yeah, so you hated it and you were spurred on to go and meet with with the oral and maxillofacial surgeons. So what did they say about whether you would be a good candidate for the MMA surgery or the double jaw [00:23:00] surgery?

Pam Sheets: Well the first surgeon I saw highly recommended it just upon meeting me and looking at my outside data. And then he needed to do some additional analysis to see if I had the proper structure for the surgery. And it turned out I did not. And that my bone was too thin and I was devastated. It's like, what?

My, my bone's so thin. You mean your screw can't be embedded in there? It's so thin, like, why hasn't my face collapsed? Like, why haven't I fractured all the times I fall doing my sports? And I felt terrible. It's like,

Emma Cooksey: you had, had honed in on the fact that MMA surgery can really fix a lot of, you know, it's can be, feel quite drastic because it's quite a big surgery, but you felt like, well, that's the answer.

And thento find out that it wasn't and you weren't a good candidate, how did you feel?

Pam Sheets: It it was a terrible disappointment. I mean, I thought, okay, so I don't, I do not have a chance to be [00:24:00] cured. I am going to need to live with the CPAP, but let's see what the next surgical opinion is for doing something less and maybe it will help me feel better, you know, maybe I could get something out of it, because if I'm going to have to do the CPAP, I'd at least like to explore, could I feel better

Emma Cooksey: Yeah, and I think that's one of the things that really drives my work. Like, I think that oftentimes there's been so much with sleep apnea where doctors have always looked upon it as a one treatment Thing, like you pick one treatment, so people are on CPAP and that's all they're doing.

Whereas to me it makes a lot of sense for a lot of people to try different modalities together and see if you can improve things. And maybe, you know, like even if people stay on CPAP, they might need a lot less pressure 'cause they've improved, you know, with nasal surgery or, or whatever has to happen, you know?

so you then started discussing lesser surgical [00:25:00] options?

Pam Sheets: yes, that's correct. And, can I give a spoiler alert or would you like to save the result to the end? You know, for those people, for those people who might be tempted to turn the podcast off now, you need to know that the lesser surgery cured me.

Emma Cooksey: Oh, wow.

Pam Sheets: my sleep apnea. I gave away my CPAP machine to my friend who had a lesser machine.

And, and so you have to understand that, you know, for every person, and you and James Nester have both said this, it's not a one size fits all. And because A lot of people choose like, well, if I can't have an MMA, I'm not going to be cured. I'm not doing anything, please. You know, that's the wrong way of thinking about it.

Emma Cooksey: what was the specific surgery that, that you then went on to do successfully, we know, because of the spoiler?

Pam Sheets: So, you know, it's called EASE. It has its own acronym E A S E, and it is [00:26:00] a surgically assisted expansion of the palate, but it's, I mean, I hope my surgeon Dr. Li finds a team of people to take his place because he's the only one who does this and the reason he is is because of his particular qualifications being both an oral maxillofacial surgeon, a plastics person, and also an MD ear, nose and throat specialist, which allows him access to different places to do his work that results in better results.

Results, at least for people who have nasal breathing problems.

Emma Cooksey: I kind of have read a little bit about ease online, but I haven't talked to anybody who's actually done it. So compared with some of the other, like I've had Dr. Kevin Coppelson on to talk about his mind procedure and how.

Like, the cuts are different, and there's MSE, and there's DOME, and all different people do it different ways, so what [00:27:00] was it about the EASE procedure, like, how was that explained to you, what exactly they would do?

Pam Sheets: Well I, I'd sort of done a deep dive on it myself and I watched a number of video conferences that Dr. Li had given and they're full of pre and post surgical CT scans and so it's really very graphically apparent that particularly if he's seeing a patient who had a different procedure. Many of the procedures done only through the mouth, through oral access, can get a very large gap at the front.

But as that goes back further toward the throat and under the nose, it doesn't necessarily expand under the nose. It doesn't go all the way and and his procedure is basically a parallel expansion all the way back under the nose. [00:28:00] And so Even for me, I got a 6mm expansion, which is, you know, what, a quarter of an inch maybe?

It's not that much. I had it between an eighth and a quarter of an inch. And immediately post op, I could breathe through my nose in a way that I didn't think was possible. And that was just immediately post op day one.

Emma Cooksey: Wow.

Pam Sheets: there is something that is very functionally improved with very little expansion if you do it further back under the nose.

That's the key.

Emma Cooksey: And so what they did was they cut your palatal suture in the surgery and then put some sort of device that you were able to turn yourself. Is that how it works?

Pam Sheets: Yes, exactly. So, in surgery, you already have a diastema, a separation

Emma Cooksey: that's a gap between your two

Pam Sheets: a gap, a gap. Yes, [00:29:00] and the device is a metal cylinder that goes, you know, across the palate and it's embedded into your maxillary bone and it has two nuts on it and you get two wrenches and every three, at three times a week, you loosen the locking nut so that it can expand.

You then turn the expansion nut. And then you lock it back on. And with each of these adjustments, you send pictures to Dr. Li, you text him, and he takes a look and says, great, keep going, great, keep going. Or if there's anything that looks off, you deal with it.

Emma Cooksey: right on. And so talk to me about pain level.

Pam Sheets: Well, immediately after surgery, you know, there is pain and swelling in the face in general and in the mouth. I, I would say it's certainly bearable and I did use a narcotic, I think, two [00:30:00] days, maybe. The first two days, after that, it was just an aninflammatory.

Emma Cooksey: So you said you were turning it a couple of times a week. How long did you do that for until it was fully expanded, I

Pam Sheets: total, my total expansion went, as it turned out almost nine months. And if you, if you read Dr. Li's website, he'll say expansion with the ease is nine to twelve weeks. So, I kept thinking, okay, am

Emma Cooksey: That is longer than I thought it was. Okay. So nine months he had it

Pam Sheets: Right. He has had a patient. I'm not his record. I'm his oldest patient he's done EASE, but I'm not the longest expansion.

He had somebody who went about a year. And so it depends on where you're starting. My mouth was so narrow, my arches so narrow, palatal arch, that he could only put in a pediatric small device, very short device, and I used that for five months and then I reached my limit on it. And so I had it removed, I had another [00:31:00] one placed in the office, and that was a medium, and I went another three and a half months on that.

And you can go, technically, as long as you're still having improvement in your breathing, and or improvement in your sleep apnea, by which for me, the way I measured it was my pressure kept being lowered, and lowered, and lowered.

Emma Cooksey: Yeah.

Pam Sheets: Yes.

Emma Cooksey: So you were still using CPAP this whole time,

Pam Sheets: Yes.

Emma Cooksey: but you were having gradually lower were you on like an auto adjusting CPAP or how did

Pam Sheets: No my sleep doctor would have to manage that, specifically based on my symptoms of, you know, I've got, I'm, I'm having more gassiness, so, you know, I'm bloated, it just feels like it's too much in my face, I want to rip the thing off, those kind of symptoms.

Emma Cooksey: you still were not a fan. And then, so after the nine months, you go back and have it taken out?

Pam Sheets: Yes.

Emma Cooksey: Okay, and at that [00:32:00] point then how, is there healing after that as well?

Pam Sheets: So, I had a slight complication and this is not totally unexpected in fact I was surprised it didn't happen earlier, but I, I did get a superficial mucosal infection, a little pus drainage in one area where The device goes into my maxilla. And you know, these things are foreign bodies. You know, your body doesn't, they're not wanting to have these things.

Although the mouth tolerates them very well, you still can get an infection. And at that point, I had antibiotics, but I couldn't get completely rid of it. And that's why I stopped. Otherwise, I might have gone further. But, if a person is not infected and they've reached a plateau, I'm breathing great, but I'm not breathing any less, my pressure is as low as it can be on my CPAP machine, then you decide to stop turning it.

You don't expand anymore. You leave it in place for three months so that everything heals [00:33:00] across the expansion. In my case, because I had to remove this device to clear the infection, The orthodontist was able to place another device called a transpalatal arch and it's essentially a wire that just goes across the arch, it arcs over and it attaches to two braces on your molars so it just holds everything stable.

Emma Cooksey: And so was the orthodontist involved with Dr. Li and how did that work?

Pam Sheets: So, primarily, Dr. Li managed it and, you know, he really managed the whole thing. And as I said, you know, he doesn't have a replacement, nobody wants to do his level of training, so I'm hoping, and I've kind of put in his ear, you know, assemble a team. Have an orthodontist who's willing to look at, you know, follow the expansion locally, you know, have the sleep doctor person, have an ENT who just does those cuts through the nasal scope, have, you know, somebody else who's an oral [00:34:00] maxillofacial do everything from the mouth side.

Like, I really think it's not realistic to find a surgeon who does everything he does, but I, Love this procedure compared to the others, I just think that breathing through the nose is so much of the issue for so many people.

Emma Cooksey: at that point, it's all healed and you had that removed and then how did you feel? Like, what was the result? Like, I know that you said even right when you had The first surgery, you notice a difference in your nasal breathing.

 you had the thing taken out and you were all done? How were you

Pam Sheets: Well, well, interestingly, I just kept breathing better all the time, and I thought how could this possibly be, but the orthodontist I saw who is very smart in this area and up on all the latest research, she actually told me I would probably continue to have improvement. After everything was done, there is something about aerodynamics through the nasopharynx that when there's so much [00:35:00] restriction and increased pressure to flow through that area, that it remodels things in a way that's adverse.

And once that's corrected, it takes a while for some physiologic and anatomic changes, but I could expect to even improve more. And indeed, I, I find now in the day I can, when I'm just sitting at rest, I'm breathing through my nose and my mouth is closed. I never could do that before

Emma Cooksey: I could, I could almost cry, Pam, because that's the dream. I love that for you. That's wonderful. did you have to continue CPAP? Did you do another sleep study? What happened with that?

Pam Sheets: So we knew we would do a sleep study and this one we decided to do in-house, a polysomnogram in the hospital. And it was, I'm trying to remember the exact timing after the, we got the palatal expander out and then we waited a short time to just have everything kind of settle down to a new you know, [00:36:00] base baseline.

And I went in and had. in lab study, and,

Emma Cooksey: How did that go versus the home study? Did you

Pam Sheets: oh, well, it was terrible, to be honest, but I have found that different sleep centers have different ambiances and I would really request that you find out which is the one that's like the high class hotel room and not your typical hospital

Emma Cooksey: My, my experience was not like a high class hotel room

Pam Sheets: Yeah, neither was mine. It was anything but. And I don't want to belabor that, but what I told myself going in, despite all the challenges of the room, and how, you know, it all went, this is really important, and you just need to chill and do the best sleep you possibly can. This is really, really important to ignore all these external stimuli.

And that, in fact, even I think with [00:37:00] the next day, although the official report wasn't out, they sleep doctor in the hospital who has to interpret it because it is hospital based called my sleep doctor and said, you know, this is amazing. It's really a normal study. You got to let her know. And then the official word came out in a report probably within a week.

And I, yeah, I couldn't really believe it. I thought, well, you know, so I'll probably need to be, I can be off the CPAP a while and then I'll probably have to be tested again and get back on it. Right. That was what I thought. assumed. But she said, there's no reason to retest. I mean, I

Emma Cooksey: There's nothing to see

Pam Sheets: do.

Emma Cooksey: Just go about your life, Pam.

Pam Sheets: Yes, that's what she said. And I still didn't believe it. I'm like, are you sure Marilyn? Should I save this, you know, machine? No.

Emma Cooksey: Well, wonderful. And so were you so delighted?

Pam Sheets: Yeah, I mean I, I still am like smiling. I look at my bedside screen. There's [00:38:00] nothing on it but a glass of water. It's my glasses.

Emma Cooksey: And you're sleeping well? You wake up refreshed and all of that? It's wonderful.

Pam Sheets: I actually now don't feel like, I just wake up and I'm not groggy. Now I can feel the difference. I didn't feel it on CPAP, but I feel it now and I, I just. I am so grateful.

I can, sometimes I just find myself crying, you know, like, oh my god.

Emma Cooksey: Yeah. I totally understand that. I'm so grateful for you sharing your story with us. I'm glad you had such a great result.

Pam Sheets: Yeah, I, I am, I, I'm, I'm really hoping people can understand there's a process. It's not a direct line to get a result. You're right, you have to advocate for yourself, you have to do the deep dive, and don't just accept what somebody that you've been seeing says, you must do this, you know, really, really, really take the time because no process is perfect [00:39:00] and easy.

As I said, I had an infection. I was, you know, I had, there are challenges along the way. You know, it's hard to do the adjustments sometimes, but you just, There's so much you can get out of it so persist. Don't give up. Don't give up. That's exactly it. Don't give up.

Emma Cooksey: thank you so much. I really appreciate your time today.

Pam Sheets: You're welcome and thank you for doing the good work you do.

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