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Episode 85 - Emma Cooksey - My Vivos Palate Expansion Failed

1:06

Hey everyone, it’s Emma Cooksey here and I'm your host.

So I'm back at last after an extended break, I thought was going to be about four weeks and that would be off the air with the podcast, but I ended up taking a full two months and partly just because I was really worn out by the end of last year and I just needed a proper brake and then right at the end of my break, I got covid.

1:33

So that wasn't ideal.

But overall I've had like, A really good break and I've been working on a new podcast episodes.

So we have a ton of really interesting conversations coming up and I'm excited to get started.

1:52

So, so before we get started this Sunday, on January the 15th, and there's going to be a rising voices, story, sharing with Chris and Cassio, who you might remember and was on the podcast.

2:08

And I love her.

So I'm excited.

I'm going to be hosting it.

And Chris is going to be sharing her story.

Having completed the rising voices speaker, training program and it's going to be really great.

So I'm looking forward to and there's going to be a Q&A at the end of it so I'll put all the details in the show notes for this episode but you go to the project sleep Facebook page and it will be live at 7 p.m.

2:36

Eastern this Sunday January. 15th.

So I hope you guys can join us and if you have any questions, we're going to do a live Q&A at the end of persons presentation.

So should be great.

And then the other thing I was going to just let you know, is for the next three episodes of the podcast, the next three.

2:55

Wednesdays.

We're going to be talking all about home, sleep testing.

So a lot of people have asked me about options for home, sleep testing and especially Telehealth.

Are you can do the entire process from home.

3:12

You don't actually have to go and see a sleep specialist, you can do it like, through a video chat and then have the tests delivered to your home and do a follow-up appointment and also on video chat.

So we're going to talk to a couple of people who have done that and then next week I'm going to be talking to Drew Copeland from sleep better NYC and who has a lot of experiences asleep.

3:36

Tag is going to talk us through.

Home testing and, and all the different options and it was a really good conversation with him.

So I'm excited for the next few episodes.

I think you'll get a live of them.

So on to today's episode.

3:53

So this episode has been a long time coming.

So if you've listened to the podcast for a while, you've heard me talk about my journey with sleep apnea, where I was a CPAP user for a long time, you know?

So now it's been 14 years and and once I started reading, you know, James Marsters but breath and then I, you know, was interviewing people on Podcast about nasal breathing.

4:22

And I've talked a little bit about having a tongue tie release because I had this very tied down tongue, which was stuck in my tongue from resting on the roof of my mouth.

And I've also talked a little bit about myofunctional therapy and I think we got as far as talking about beginning pal expansion using Vivas appliances, the time frame is originally I went to see The Vivas dentist Aviva's provider in March, 20 21.

4:57

So that was our first meeting where we did all the intake and looked at my Airway and all that stuff.

Then the first Appliance I went with was a DNA Appliance and and that started in May, 20 21 and then we did that all the way until we did a sort of mid treatment update and we You do realize the, I got on some benefits from it, but I wasn't sleeping better.

5:26

So we decided to switch out for an M mRNA Appliance.

So we'll talk about what that is.

Well, but so that happened in January, 20, 22.

And I wore that Appliance until September twenty twenty-two, so will some of the basics Viva Therapeutics and have What they call the Vivas method.

5:53

And so it's not just that the dentist is supplying you with palate expanders.

So they really look and you can look online for these different models but they really look a lot like pal expanders when you were a child.

6:09

Do talk a lot about the fact that this is a multifactorial and process.

So certainly my provider talked about and weight loss And going to see an ENT and doing craniosacral therapy and myofunctional therapy and all these things together with the pal extension.

6:31

And, you know, the time I was all-in man.

So I was just like, yeah, that's fine.

Where do I sign?

So the actual treatment cost me six thousand eight hundred dollars and we thought it was going to take between 18 and 24 months.

6:49

So a A lot of people, I'm just sharing how much I spent.

A lot of people are spending a lot more than that and I guess a lot of it depends on where you're starting from and how complicated your case has had many appliances, you need and that kind of thing.

7:07

And I've heard people spending, you know, twelve thousand dollars and up and this is for most people.

This is an out-of-pocket expense and it's not a very common I don't like if you talk to a sleep Specialist or a regular dentist and they're going to look at you like, you have 2 heads and that certainly happened to me my regular dentist thought that it was lunacy and what was I doing?

7:40

And, and I also talked to a couple of really trusted and very experienced their away, dentist who both told me and You know, that the palatal suture is very much, you know, fixed by the time you're an adult and that they didn't really see a removable.

8:02

Appliance being able to give me the power expansion I wanted.

9:38

The other part that they both told me was the biggest part of this is moving your jaw forward, right?

Which and You know, Vivas claim that that happens like a lot, you know, as the upper jaw expands forward and I then the lower jaw kind of goes with it, that wasn't my experience.

10:05

But, and certainly that's what they claim can happen.

Most of the other dentists.

I talked to said, this isn't a great plan and, you know, recommended doing Sarpy like doing a surgically assisted rapid pal.

10:21

Mansion followed by double jaw surgery.

This is where it just comes down to Patient choice, right?

I just don't want to do that.

That's a huge surgery.

I've had lots of people on the podcast who've done that surgery and had wonderful results and I'm really thrilled for them.

10:38

I just don't want to put myself through that surgery.

So so I just thought it was worth mentioning that, you know, if you go to anyone, except Willis, dentist, Who does these appliances.

10:55

They're not going to know what you're talking about or they're going to question of this is going to work, right?

So I started I with that first, Appliance DNA Appliance and to begin with, we started just with the upper Appliance and then we added the lower Appliance so there's the DNA Appliance they're not, they're not connected together.

11:21

So they don't have a mechanism on the side that's holding your jaw forward.

So they're purely expanding and your palate.

I was using them as directed at 15 hours every 24 hours.

11:37

So I would do 12 hours at night, like, 8 to 8 and then I do an hour off an hour, on an hour off an hour on, and until I got to the 15 hours.

So it was quite a big commitment.

I'm not sure.

Or how people are managing to do this with ordinary jobs.

11:57

And I'm fortunate to work for myself and be at home.

A lot of the time, so it worked out pretty well for me.

But I think for a lot of people, it can be a challenge.

So that's one thing to kind of Bear in mind.

So, I was turning these appliances.

12:12

As I was directed, so you get a little key and you turn the nut, every 3 to 4 days and, and that gradually gradually.

Actually spend your pal over time.

So a couple of the things I noticed right away, were my nasal breathing did improve, while I was wearing the appliance not so much when I wasn't.

12:36

But I did notice that while I was wearing the appliance my nasal breathing improved.

And another thing that happened for me was I had had, I mean, I think my orthodontic work was pretty extreme back in the day.

So I had bicuspid teeth removed and very retracted braces, the Back my teeth kind of into my Airway almost.

12:59

That's a very common thing that people are trying to reverse with these appliances.

Right?

So my my orthodontic work had left my teeth so tightly packed together that I couldn't floss between my teeth because there was no room and I didn't really realize until I started this journey with the DNA Appliance That I did have facial tension and headaches which I think Were Somehow related to my teeth being so tightly packed together because I noticed over the first few months as my teeth gradually moved so that they were opening up spaces.

13:46

I noticed less headaches and less pain in my face so that part was really good.

So why didn't notice with the DNA Appliance was any Improvement to my sleep.

So I was still using CPAP every night and and so I kind of you know was of course like I was crying half the time because I'm so tired and but I you know kind of was saying to the dentist like you know I'm not sleeping better, you know.

14:17

I'm not really noticing that I'm sleeping better and it's really frustrating because by that time, you know, I done like Maybe eight or nine months with these appliances so that point we decided to move on to an M mRNA Appliance.

14:34

So this one's slightly different and it works as a mandibular advancement device, as well as an expansion Appliance.

So if you're completely lost, let's just go back to walk.

Mandibular advancement device has do.

So we've talked a lot about mandibular advancement device has an aura.

14:53

All Appliance therapy on the podcast.

So what that does is you're wearing an appliance in your mouth that night, which holds your jaw forward and that takes the tongue and soft tissue out of your Airway and holds it.

15:09

So that your Airway is more open.

So the M mRNA Appliance.

So there's an mRNA Appliance and then there's an M mRNA, Appliance the MRNA, Is an appliance like we said, which works to expand the palate but also to hold your lower jaw forward and the appliance I got is called an M mRNA.

15:36

And if I'd had the choice knowing what I know.

Now, I would have had an mRNA and not an M mRNA.

So the M mRNA has removable Parts on the side which are holding your jaw.

15:53

For words.

And they're held on by these little, almost like little elastic bands, but they come off really easily.

And I would be constantly messing about with them and took ages to get used to and it just wasn't very comfortable.

16:09

And so that's just my two cents on it.

And I would say over time, once I got used to that Appliance after a rough couple of weeks, I did notice some improvements to my sleep.

So that said I was still using CPAP all the time and what I was noticing was on an aura ring and it was showing where I'd never really had deep sleep to speak up before I was having periods of deep sleep and my sleep architecture, like all the different stages of sleep, seemed a lot more normal once I started wearing this mmm RNA Appliance.

16:51

So that's again, too.

Together with the CPAP.

So it's kind of holding my jaw and a more open like a more forward position so that my Airways more open.

So the wonderful thing that happened was I really started dreaming again and I hadn't really realized over so many years that I never really drempt but now I was having a lot more dreams and waking up remembering that I was dreaming about something which was a whole new thing.

17:23

I would say that, I, Overall, my sleep was improving but I still you know, was having some Daytime sleepiness.

It wasn't like I was waking up really refreshed all the time but it was significantly better.

17:40

So I was really encouraged by that.

So we talked a little bit about this idea.

Where if you're doing the Vivas method, the practitioner is going to tell you, like this is a multifactorial condition, you know.

Sleep apnea has a Of things that affect it.

17:58

And so they're going to refer you out to other Specialists.

So, part of the kind of like issue I have with that is just that I'd already invested almost seven thousand dollars of this point.

So, I think that it hasn't really sunk in with me that I was then going to be, you know, told I should go and see different specialists in different people with even more out of out of pocket.

18:26

Ants, right?

So I think that's one thing that I would really recommend that people think of this as, you know, part of the expense and then they set aside more money for other things.

They're going to have to do.

And so with me I kind of, I mean, I feel like my family is really fortunate with our financial position but week.

18:49

Seven thousand dollars is a lot of money to us.

So I didn't really feel in a position to be able to To then go and, you know, see functional medicine experts and all these different people that my Vives provider was telling me would help with my case.

19:09

So, a couple of things I did do were I went to see an ENT because they don't think of that, I was immediately like a really good candidate for surgery or anything like that.

And they gave me a steroid sprays for my nose which I diligently used.

19:25

So that I was kind of that.

So I did follow the advice about the NT and it just didn't really lead to much improvement.

Then another thing that they talked to me about was and weight loss.

I felt as though I was on the right track with that.

19:42

The thing that I now realize in retrospect is the, I started perimenopause and I was doing all the things that I would normally do, you know, I was walking more than two miles every day.

I was, Was eating Whole Foods.

19:57

I was like really I felt like I was focusing on it and I was consistently gaining weight, not losing weight.

So there's obviously a lot of feelings caught up with the fact that I gained weight instead of lost weight, right?

20:13

So and you know, I felt a lot of disappointment and some shame and like I didn't do the right thing and what always money and you know, all the stuff.

And, but I just wanted to be clear about that.

20:29

Because when we come on to talk about what happened, when my sleep apnea, the weight gain part of it is almost certainly a big factor.

So then the other thing that happened was they were recommended myofunctional therapy.

I had done a lot of myofunctional therapy before I started my pal extension and I carried almost some exercises, but I wasn't actually seeing a myofunctional therapist.

20:52

You know we clear anything partly because of this like I do Already spent a ton of money, and I don't really want to spend a lot more.

Another thing I did that I think was helpful, was, I stopped drinking right at the beginning like I stopped.

Drinking alcohol in me, 20, 21.

21:08

And I think that was a positive for my sleep.

So I'm wondering if that maybe had a positive impact on my sleep architecture.

So that's kind of some of that stuff.

I did go for body work.

I went for craniosacral therapy and that kind of thing.

So there were some of it that I did and some of the that I Didn't mainly because I just felt like I couldn't afford a whole bunch of going to see functional doctors and other people with a lot of out-of-pocket expenses.

21:36

So over time I did start to question if I was really getting the kind of results.

I was hoping for as related to my sleep apnea, it really feel like my sleep apnea was improving and I was still as I was saying using my CPAP every night and I wasn't seeing NG, you know, pressure dropping or any of those indications that this was really improving my sleep apnea.

22:03

So, the other thing that happened was my friend, Graham Stony friend of the podcast, who I interviewed all about his experience with beginning Vivas like using device appliances and you can go back and listen to that episode.

22:20

So he has a really in-depth blog that he's been keeping about.

Journey and Graham found that he got to the end of 20 months of being extremely compliant and following all the things that he was supposed to do for his device appliances and he found that his sleep apnea even though his Airway had expanded.

22:46

His sleep apnea did not improve, thank just talking to G.

I got really nervous like, you know, watching out for those Of things happening with my situation and one of the things that Graham mentioned to me and I'll link to G very expensive, blog posts in the show notes, but one of the things G talk to me about was that he thought that his Appliance was winding itself back.

23:19

So, I had noticed over time that my Appliance wasn't really opening up the kind of space.

I would think that it would It over all this time but the movements are so minut that it's difficult to judge like well you know, is it a bigger space and it was last week you know, like so this is one of the things where I feel kind of silly that I didn't really pick up on this earlier.

23:45

So G and talked about using what's called a taper gauge.

So he was actually and keeping a record of Of how much he was expanding, you know, how many turns he was doing and then he was measuring the gap between the two parts for suppliers to make sure that the expansion was exactly what it should be.

24:10

And that's something that I did not do and I would advise anybody doing this to definitely do that because what happened with me was I got to and what what was the end of my experience and My provider was saying to me, were you even, you know, like turning the not where you even expanding your Appliance?

24:37

And I was like, yes I was expanding.

Its expanding it.

Exactly as directed every three to four days this whole time but I think like based on you know like the size, the distance of the Gap in my Appliance and also our Final numbers on how much my pal expanded something went wrong with these appliances.

25:04

I don't, I don't know.

I mean, like, I'm not a scientist, I haven't done, you know, an experiment to show that like the pressure of my and palate was somehow pushing the nut backward, again, every time I push it forward but I think in retrospect that's what happened.

25:22

So that certainly the experience that Graham had and he Having to, you know, move it forward multiple days because it was moving itself backwards.

So maybe this is extremely rare.

I, you know, I'm sure that, you know, maybe I just got an appliance that didn't work as well and but certainly something not great was happening.

25:48

So we got to last and August and August 20, 22.

To.

And we started talking about doing a sleep test to check where we were and see what the progress was.

26:04

And because I've been using these plants, you know, for 15 hours every 24 hours for you, no more than a year at that point.

So we were kind of eager to see what the change was and so that's when I really started realizing.

26:20

Like not only had this not worked and to improve my sleep apnea.

It was My son got me was significantly worse.

So we did a test where I slept without my CPAP, but with the m mRNA Appliance in and it showed up as being severe sleep apnea where before I had had moderate sleep apnea.

26:45

So it's a bit tricky because I didn't have a sleep test right before I started Vivas, just because I couldn't afford to run, and we do sleep to ask for no reason.

So a few years, Years before that my love my most recent sleep.

Test was an H, I have 16 which is moderate and and that was kind of like the last thing I had to go off of.

27:08

So this was kind of a bit of a shock to see that it was saying that I had severe sleep apnea, so I certainly went into this thinking, I had moderate sleep apnea and then to see that my sleep apnea was no severe.

And even while I was wearing In the mandibular advancement device palate expander and was a bit of a shock to me.

27:32

So I was pretty depressed by that but I also was kind of questioning like would use the Sleep image ring and another one that we're home sleep test.

And I was kind of like well maybe they're not accurate, I'm not sure.

But I certainly knew that I slept horribly the night that I didn't have my CPAP.

27:51

So I was like, well I'm definitely just going to go back to my CPAP.

So, in the meantime, just because of what my job is, I had an opportunity to take a watch, Pat and sleep study at home and so I did that one.

28:08

And it showed, I did it without my CPAP and without my Appliance, so just with nothing to see where I was.

And it showed an h, i of 41 and so definitely severe and Yeah, it was really really devastating and after that night of sleeping without CPAP and without the appliance I realized just how terrible I felt the next day and it was just really depressing feeling like wow my sleep apnea is not only hasn't improved, it's got significantly worse in this time frame.

28:50

So there's so many errors, there's so many things I should have done differently but I have to just kind of explain like the emotional result of that like I just felt like I've been working towards this whole thing like I've been diligently, you know, turning this Appliance every three or four days.

29:13

It's not very you know, it doesn't fit in super well with your life to wear a bulky, Appliance in your mouth for fifteen hours, every 24 hours.

And so it was just this feeling of it.

All this effort and and all this emotional energy and to find out that not only had it not helped, but it had failed.

29:33

And also, my sleep apnea was a lot worse.

Now, I felt just really devastated about it.

Like, clearly this doesn't work for every person, right?

Like I'm not expecting things to have 100% success rate.

I know that, you know, having read about different surgeries or different medications like, of course, Things are not always going to work for every person but I think the fact that my sleep apnea had gotten significantly worse over, this period was a real shock.

30:07

I think that I thought the worst case scenario is that it wouldn't really help me.

There's a lot of factors right?

That have gone into the worsening of my sleep apnea.

So I'm not in any way saying that these appliances worse than my sleep apnea.

So the appliances did expand my error way.

30:25

So if you look at the actual statistics and the volume of my Airway increase quite a law for me and G.

That is not what happened, right?

Our Airways did expand bar sleep apnea didn't improve.

So that's kind of something to be aware of.

30:42

I think that it's easy to kind of oversimplify sleep apnea and say, well, if only my Airway was bigger than I wouldn't have sleep apnea, but it's not really as simple as that.

The other thing that I do think could be playing a part in the worsening of my sleep apnea, it is the fact that I had my tongue tie released, so even though having a tongue tie is not good.

31:08

I had a really tight tongue.

I was just holding my tongue to the the bottom of my map and not allowing my time to rest at the roof of my mouth.

But the thing about that is that's when, you know, after we have the tone Tire Release, then my myofunctional therapist was like, oh, not as good time to do pal expansion to make more room so that my tongue would fit into my palate and could support it right.

31:36

The problem was that is since my palate Ian failed.

There's not really enough room for my whole tongue to fit into my palate.

So keeping it even though I do myofunctional therapy exercises during the day, and I always try to rest my tongue in the roof of my mouth.

31:55

That's not like really possible, just because there's not enough room.

So now, I'm wondering if my newly released tongue with way more range of motion and ability to fall back into my Airway is actually causing more of a blockage in my Airway than it did before.

32:15

It was released.

Where does all this leave me or more to the point where does it lead use?

And I'm definitely not saying that, you know, pal expansions was removable appliances doesn't work.

That's not why I'm saying, I'm saying for the right person, so if you go back and listen to the interview, I did with Chandra Hartman and she had really great results over a couple of years.

32:40

And really improved like she improved her h.

I so much that she didn't need her CPAP anymore.

And she's a legit real woman because I met her and person in the Florida Panhandle.

So and yeah, go and listen to Chandra has episode so so I think it's just good to ask a lot of questions, like what other parts do I need to do.

33:05

And if if you're told you need to see a functional medicine doctor or You need to go for craniosacral therapy or, you know, lose a significant amount of weight.

Maybe look at doing that before you start, before you actually hand over money and start doing this kind of treatment because, you know, there's a lot more evidence on weight loss, improving sleep, apnea and myofunctional, therapy, improving sleep, apnea, then there is on pal expansion, improving sleep apnea, So one of the things that I think was a huge error on my part was just stopping pal expansion completely and not even using any sort of retainer to keep the progress that it made.

34:00

So my palate did expand.

And and what happened was I was so upset and sad and I'm angry that this has been the result that last September.

I just stopped using any of the appliances, and was just like, I'm all done with that, but I didn't use a retainer and thing which they do recommend.

34:24

And so, what's happened to me is my palette has basically gone right back to how it was before.

And so I've lost all of the expansions that happened and, My teeth had gaps in them and neither gas of all closed up.

34:45

And so, that would kind of imply that, you know, what these dances were telling me before.

I even started this about the palatal suture teams in my case to be true, right?

That the some expansion is possible.

35:02

But then what really needs to happen is your tongue needs to then take over and support that That we spent extended palette so because my palate wasn't big enough to house my tongue.

35:18

My palate has just kind of like almost like it's almost like it's stretched out like a rubber band and then snapped right back and so that's disappointing and has worsened my sleep significantly.

So yeah, that's basically where I'm at much worse position than I was in before.

35:37

So here's I've tried to just kind of come up with some questions you guys can ask if you're interested in this kind of felt expansion.

And the first thing is make sure that you at the outset have enough money to invest in multiple Specialties at the same time and budget for them.

35:58

So know going into this that you know, it might be that you need to go to functional medicine doctor or it might be too kind of Idea behind that is getting to the root of what your information might be a lot of people with sleep apnea, have a lot of information as we talked about.

36:16

I definitely, you know, that's definitely one of the things going on with me but those those services are usually not covered by insurance and they're expensive.

So consider that ahead of time, consider myofunctional, therapy one-on-one, you know, the whole time, make sure that you can afford that and honestly like, I If I had my time over again, I would have if I'd realized.

36:41

What big factors they were.

It's not like I didn't know that being overweight and inflammation were factors.

I guess I just thought like, you know, improving the size of your Airway is gonna you know, be a really big factor in them.

36:59

But it turns out, I think in retrospect what I would have done is you know lose weight and really get to the root of the information to figure out what was going on.

My nose, right?

And and just really try and solve those problems before, I would spend money on pal expansion.

37:20

The next tip is track your progress.

So G Stony, and I'm going to link to his blog in the bayou.

So if you go and look at his blog, he lays I all this data that he tracked, you know, have to like maybe track your CPAP dates as much as heated and but certainly just track.

37:41

At just the width of that and space between the parts of your Appliance, to make sure that there isn't some sort of mechanical malfunction happening.

So, that way you're going to mark down, like, this is how long it should take to expand a millimeter and that will depend on how many hours you wearing your Appliance.

38:05

If it's less than the recommended 15 or 16 that it might be less but you can get with your doctor or dentist That and just figure out like, how much should I see this?

Appliance expand in a certain amount of time and then get either a taper gauge.

38:22

That's what Graham had.

So that just has lots of really, really small incremental measurements on it.

And so that will help.

You know, there's definitely not a mechanical malfunction happening and it's working, right?

Third tip is half the acrylic grind down.

38:41

As soon as it contacts your pallet.

So your provider will tell you this and I think I did a fairly good job with this.

So in the beginning you're going to see the people at your dentist office regularly because what happens is, as your palate drops down, even by my new Amounts is going to make contact with the acrylic on the top of the appliance and you're going to go in and they're going to grind it down so that you know, you have some space for this palette to drop down.

39:11

So Can we stay on top of that?

Even if in the beginning, you might have to go, you know, after three weeks or, you know, probably come down after time and be like once a month but to begin with as soon as that happens you need to go back and have the acrylic grind down.

39:27

And I guess my biggest tip is just the, there's a really good podcast episode with Steven Park.

So he's kind of saying that, pal expansion could work in certain situations, but the most important thing is the experience.

Of the provider that you go to.

39:45

So it's not so much that it's about a specific Appliance.

So it's not that, you know, necessarily Vivas appliances are better than homeo block or, or whatever it happens to be.

It's more knowing that the person that you're going to knows a lot about sleep medicine.

40:03

So a lot of the dentist who are getting trained in this, don't necessarily know a lot about sleep medicine and sleep apnea.

Ideally, if you have a chance to go to somebody who offers pal expansion but also has years and years of experience with may be treating people with oral Appliance therapy or, you know, just dealing with patients with sleep apnea.

40:28

I think that's a major bonus that you should seek out.

I wish that there was more Jolly news for you, but I feel like I've definitely come out the other side of this experience.

So I We're to say like this is only my experience I'm sure there's a lot of people who have had really positive experiences with this.

40:48

I hope that this is helpful and especially for people considering this thanks so much for listening.

41:04

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