Post-Surgery Blues: Scoring Question

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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BrianinTN
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Re: Post-Surgery Blues: Scoring Question

Post by BrianinTN » Mon Feb 04, 2013 12:29 pm

Thanks, SU, for the thoughtful reply, and your clear care and concern throughout. I very much do appreciate it. And I am going to give the Provent a shot, but I want to follow the most logical "order of operations" here. I probably wasn't clear in my previous posts, so let me fix that. Since the oral appliance is a covered expense, I'd like to get that first. I grind my teeth anyway, so I see no cost to following up on that option (other than my time). If it reduces the apnea while not affecting the quality of my sleep, that's great to know. After I have it, I'll also get a one month supply of the Provent. I'll get acclimated to that for a couple weeks, and then I'll be able to take both the appliance and the Provent in with me for a sleep study. They can start measuring me just with the appliance, and then with combination therapy, and we can see how that looks.

What I was/am reluctant to do was flip the order -- go with something that requires out of pocket without exhausting the (non-excruciating) covered options. Does that make sense?

On the other stuff, yep, I do love my ethnic food. Much of it is home cooked, so no, I'm not too worried about my sodium. My bloodwork always comes back looking great.

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SleepingUgly
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Re: Post-Surgery Blues: Scoring Question

Post by SleepingUgly » Mon Feb 04, 2013 1:36 pm

I hear ya', and I'm not trying to talk you out of the order that makes sense for you to trial things, and I understand the financial piece. I do want to mention a couple of thoughts I'm having in response, though...

I've been doing some reading about MADs as the next step for myself (perhaps after Winx, if I can trial that). I can't find any studies comparing the different MADs head to head, so there's very little guidance out there on which device to choose. There's a sleep dentist on apneasupport.org who thinks the TAP is the best one, especially as it's the only one approved for severe sleep apnea, and admittedly given that I can find so little information on this, I've become biased toward that device. Personally I don't want to mess around with a device that doesn't help and then not know if another device could have been more effective. I've been very worried about MADs messing up my bite, so any time I spend in a MAD, I would like it to "count" toward determining if it's going to help me or not. I don't want to worry that a device that allows me to open my mouth is undermining the therapy, or one that doesn't advance as far, etc. Admittedly, this is not a very sound empirical basis for selecting the TAP, but that's what I'm thinking for myself.

The TAP hooks the top and lower teeth together in the front.

Provent requires you to keep your mouth shut for it to work. So two thoughts...

(1) It is easy to inhale with Provent and not feel like your airflow is restricted; however, it's very hard to exhale with your mouth shut because you're basically exhaling very slowly through pin holes. It can feel a bit like you're suffocating to do this with your mouth shut, hence Provent's recommendation that you breathe in and out through your mouth while you're awake, with the assumption that you'll switch to nasal breathing when you fall asleep. For me this was an issue because I couldn't keep my mouth shut without a chinstrap once I fell asleep. Some labs recognize this problem and will test you with Provent without a chinstrap and then add a chinstrap. Given my tendency to puff air out of my mouth even if my jaw is closed, I had to use a chinstrap that covered my mouth as well as lifted my jaw, which I did (because, darn it, I really wanted it to work!), doing some sort of breathing through the strap while awake when needed. Personally, I would lose my mind if my teeth were hooked together so I couldn't open my mouth AND I had those Provent on my nose and couldn't exhale easily. I'd probably rip my entire head off.

(2) Leaving aside the TAP, which requires your teeth to be together and turning to any MAD... I don't know if this is the case or not, but I've often wondered if by advancing the lower mandible, it becomes harder to keep your mouth shut completely (lips together). If it does, that's could impact Provent, as you must keep your mouth shut.

One last thought about the MAD + Provent Combo... I don't know if you can advance the jaw with a MAD and then, when you're used to that position with the MAD, abandon the MAD for a month or two to adjust to Provent and then return to the MAD at the same advancement or whether that will be uncomfortable. Furthermore, assuming the Provent is doing something for you, the degree of advancement on the MAD might be different with Provent than without. In short, you can add a MAD to a Provent, but adding Provent to a MAD may require retitrating the MAD (if the Provent is doing anything). In theory anyway.

All that said, it's possible you won't need Provent if you have success with a MAD. If you are inclined toward a MAD, why not try the MAD and if it seems to work, do a sleep study with it (without Provent)? Only if the results are inadequate would you need to add Provent.

I hope this long-winded post makes some sense.

If you do get a MAD, please post a thread here. I think it's a good option for a lot of people but there's strong bias on this forum against MADs. I think options are good, and I'd like more people to be helped by having more options.
Never put your fate entirely in the hands of someone who cares less about it than you do. --Sleeping Ugly

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BrianinTN
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Re: Post-Surgery Blues: Scoring Question

Post by BrianinTN » Mon Feb 04, 2013 7:32 pm

Thanks, that actually made total sense.

I've read the most positive things about the TAP, too. (I investigated this option a couple years ago when I was on BCBS and even went to see a top dentist in the Nashville area, but insurance wouldn't cover it because of my apnea being classified as "severe," and I decided not to pay for it out of pocket given the odds.) HealthNet only has one dentist in my area covered, and according to what I've read, his appliances are custom-made. Obviously, if I had my choice in the matter, I'd go with the TAP or something standard -- but given my lack of dentist options and the cost (free), I will give it a shot. I do share your concern about my bite getting messed up, and that's question #1 for my appointment on Wednesday. On the plus side, this guy is also supposed to be a TMJ specialist, and I grind my teeth horribly at night (you should see the awful holes I have in them!), so hopefully that won't end up being a major concern. We'll see…

Thanks for the tip on exhalation on Provent. I actually often feel like I'm suffocating on xPAP too, given my low pressures. My jaw *always* flares open, which means that I tape my mouth shut. If anything gets me out of feeling relaxed and causes me to want to breathe faster, that obviously gets rough. Sometimes I have to pull the nasal pillows away from my face for a minute. I'm sure it's all psychological, as I don't wake up in the night gasping for breath. It'll be interesting to see if my experience with Provent is the same.

My hope on the testing would be for me to get acclimated to the Provent + MAD combo at home (probably still taping my mouth shut), and then to go in and see how things look with the MAD only. Then, if the apnea numbers still look bad, we'll add the Provent to the mix in the middle of the night. I suppose there is a third possibility -- that the best option of all is the Provent, without the MAD. However, given that I still need to wear some sort of night guard for my tooth grinding, and that I'd already "have" the MAD at that point in time, I'm not sure what the optimal order of operations would be. (And, I'd be remiss if I didn't mention the fourth option, which is that the MAD might ameliorate whatever is making me sleep so horribly with xPAP, such that that combination works well.)

My concern about doing a sleep study with just the MAD is two-fold: the incredibly long lead time in scheduling overnight studies at Stanford (combined with the fact that I'll be out of Stanford in June and thus ineligible for benefits and possibly not even in the area), and my general desire to go in with a gun fully loaded with all the possible bullets. After five sleep studies in under three years, and the last month of me quite literally feeling like I am losing my mind, I desperately want to see some light at the end of the tunnel.

I will definitely post how it goes. Like you, I think more information is better, and there is a natural bias (as with most Internet things) for people to post when they have a bad experience. EIther way, I think it's informative. Just for the record, I know many people jumped on the "see, surgery sucks" bandwagon earlier in this thread, but I don't regret having it done. Given what I'd tried, what options were covered by insurance, and where I was in life generally, it was a reasonable option. I knew the odds going in -- and I think that's the most any patient can ask for.

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SleepingUgly
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Re: Post-Surgery Blues: Scoring Question

Post by SleepingUgly » Mon Feb 04, 2013 8:13 pm

Just to clarify, the TAP is a custom made MAD.

I don't know if the TAP is the right choice, but according to the dentist on the other site, it is the best for those with severe apnea.

Let us know what the dentist says!
Never put your fate entirely in the hands of someone who cares less about it than you do. --Sleeping Ugly

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BrianinTN
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Re: Post-Surgery Blues: Scoring Question

Post by BrianinTN » Thu Feb 07, 2013 2:10 am

So here's the link to the device (which would appear to also be my only option without out-of-pocket costs, given who and what my insurance covers here):
http://www.oasyssleep.com

The TAP looks more comfortable, but I guess we will see how this plays out first.

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Re: Post-Surgery Blues: Scoring Question

Post by SleepingUgly » Thu Feb 07, 2013 8:36 am

Brian, rushing so I don't have time to more than just glance at that link. Does it only cover some of the teeth? I've read on the apneasupport board that is not good. I think it can cause more teeth shifting, or bite problems, or something.
Never put your fate entirely in the hands of someone who cares less about it than you do. --Sleeping Ugly

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BrianinTN
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Re: Post-Surgery Blues: Scoring Question

Post by BrianinTN » Sun Mar 17, 2013 3:04 am

First impressions on the OASYS after about 10 days of use:
* It does cover all the teeth
* It's a bit bulky. It's in two separate pieces. The top part is small and doesn't really do anything, while the bottom is the large plastic piece where the action is. Compared to pictures and videos with the TAP, I think the OASYS is bulkier.
* For me at least, the nasal dilators feel gimmicky.
* No subjective change in quality of sleep, EDS, or the like

They want me to get used to wearing it before going in for another PSG, so it may be a while before I'm able to post data. I'm not holding my breath, however. (Well, I guess technically, I am...)

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49er
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Re: Post-Surgery Blues: Scoring Question

Post by 49er » Sun Mar 17, 2013 3:18 am

BrianinTN wrote:First impressions on the OASYS after about 10 days of use:
* It does cover all the teeth
* It's a bit bulky. It's in two separate pieces. The top part is small and doesn't really do anything, while the bottom is the large plastic piece where the action is. Compared to pictures and videos with the TAP, I think the OASYS is bulkier.
* For me at least, the nasal dilators feel gimmicky.
* No subjective change in quality of sleep, EDS, or the like

They want me to get used to wearing it before going in for another PSG, so it may be a while before I'm able to post data. I'm not holding my breath, however. (Well, I guess technically, I am...)
Hi Brian,

After all you have been through, I am so sorry that the results have been disappointing so far.

I really appreciate you reporting back as I greatly considered switching to a dental device and possibly going with this option. Have decided for now not to go that route for various reasons.

I hope things get better for you as you deserve some good luck big time.

49er

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SleepingUgly
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Re: Post-Surgery Blues: Scoring Question

Post by SleepingUgly » Mon Mar 18, 2013 7:10 pm

BrianinTN wrote:First impressions on the OASYS after about 10 days of use:
* It does cover all the teeth
* It's a bit bulky. It's in two separate pieces. The top part is small and doesn't really do anything, while the bottom is the large plastic piece where the action is. Compared to pictures and videos with the TAP, I think the OASYS is bulkier.
* For me at least, the nasal dilators feel gimmicky.
* No subjective change in quality of sleep, EDS, or the like

They want me to get used to wearing it before going in for another PSG, so it may be a while before I'm able to post data. I'm not holding my breath, however. (Well, I guess technically, I am...)
Does it get advanced outward slowly? If so, how long does it take to trial all the various settings? It seems like it could take longer than 10 days...

What do you mean about the nasal dilators?

Maybe you should also post on the apneasupport website where there seem to be more people writing/reading about oral devices.
Never put your fate entirely in the hands of someone who cares less about it than you do. --Sleeping Ugly

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BrianinTN
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Re: Post-Surgery Blues: Scoring Question

Post by BrianinTN » Mon Mar 18, 2013 7:26 pm

Yeah, it's got screws that can be moved outward. So far, I've had only one follow-up appointment, and they haven't advanced it more. We'll see what they do on my next one in a few weeks.

The nasal dilators are one of the things the OASYS touts as different from the competition. They're hard to describe, but they are these prongs that sit atop the device and sort of push the tissue above your lips down and out. The idea is to open up the nasal passageways, I guess. I can't tell any difference. You can see them here:
Image

Yup, I'll post over there after my follow-up. Just figured folks over here who might have been following this thread and were curious what I was up to might like to get my first impressions!

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Re: Post-Surgery Blues: Scoring Question

Post by SleepingUgly » Mon Mar 18, 2013 8:18 pm

BrianinTN wrote:Yeah, it's got screws that can be moved outward. So far, I've had only one follow-up appointment, and they haven't advanced it more.
How advanced is it now? Are your lower teeth past your upper teeth?
Yup, I'll post over there after my follow-up. Just figured folks over here who might have been following this thread and were curious what I was up to might like to get my first impressions!
Definitely!
Never put your fate entirely in the hands of someone who cares less about it than you do. --Sleeping Ugly

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Re: Post-Surgery Blues: Scoring Question

Post by blueh2o » Tue Mar 19, 2013 3:58 pm

Wow! Wish I had found this post earlier. I could probably write a book in response but I'm too lazy so I'll keep it short.

1. I was diagnosed with CompSAS in May 2011. Actually, I had to convince my sleep doctor that it was Complex and not just OSA. After six months of compliance on on APAP with terrible subjective results (AHI around 1.0), was prescribed a Resmed VPAP. Helped for about two weeks then still felt like junk.

2. I live in NorCal and have been to Stanford and had the honor of seeing Dr. G personally around 3/12. His opinion was that APAP, not ASV, was the appropriate treatment for my CompSA. He says resolve the obstructive component and the central component will follow, so prescribed back to Resmed S9. Three to four months later central apneas were gone and remain so. Subjectively, sleep still sucked with AHI remaining around 1.0.

3. Had a MMA scheduled with Dr. Li but was refused by insurance.

4. Had a septoplasty/turbinate reduction 11/12. Improved nasal breathing not sleep quality.

5. Went to orthodontist to get TAP Elite 11/12. Been wearing/titrating since. Subjective sleep (what's sleep like again?) still sucks. I feel like I'm near the end of my protusion as my jaw is tending to want to stay protruded during the day. My next appointment is this week so we'll see what ortho has to say.

6. My sleep hygiene is excellent and I tried a round of sleep restriction 11/12. Recently, signed up for Sleepio the internet sleep program, and trying sleep restriction again. Seemed to help the first time but not necessarily this time. Still have a couple of weeks to go.

Not sure why Brian would even consider another PSG if he still feels like crap. Who cares about the result of a PSG if you feel bad???

Anyway, good post and keep it up. Any questions, fire away.

PS. Almost forgot, I tried Provent but you better be a solid nasal breather or don't even try. All instincts will tell you to breathe through your mouth which obviously eliminates the therapy. They should warn of that on the website but I guess that could kill sales. Was a mouth breather then but since trained myself to be a nose breather so maybe I'll torture myself testing it again.

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BrianinTN
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Re: Post-Surgery Blues: Scoring Question

Post by BrianinTN » Sat Mar 23, 2013 2:45 pm

SleepingUgly: Yeah, my lower teeth are certainly past my upper ones. It's sort of uncomfortable actually, but I manage to go to sleep. However, I can subjectively say that the quality of my sleep definitely feels worse (waking up more tired, more EDS, more irritable, etc.). Somehow, just about anything I seem to do to improve my apnea situation leaves me feeling worse than before!

blueh2o: Whew! We have a lot in common. Dr. G also was very pro-APAP and anti-ASV for me. And yeah, insurance nixed Dr. Li for me as well, so I had Dr. Capasso do my surgeries. (Results aside, I really liked him.)

You raised a pretty good point with this line:
Not sure why Brian would even consider another PSG if he still feels like crap. Who cares about the result of a PSG if you feel bad???
I think it's a balance between how I feel and how healthy I am. If, for example, the oral appliance were really doing a great job of addressing the apnea, then maybe I'd stick with it even though I feel worse. If the improvement were only marginal, then I'd go back to my substantially more comfortable $15 mouth guard to deal with my tooth grinding.

The thoughts on Provent are actually super helpful. I'm a big mouth breather, and have had to tape my mouth shut the entire time I've used nasal pillows on xPAP. Sounds like that would be a concern here too.

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Re: Post-Surgery Blues: Scoring Question

Post by blueh2o » Mon Mar 25, 2013 11:02 am

As a follow-up, my orthodontist and I determined that the TAP Elite is at it's maximum protrustion for me after approximately four months of adjustments. I'm having a hard time keeping my jaw "back" during the day. I can set it back in the morning then find that I'll have to set it back again throughout the day. Also, some minor TMJ discomfort when setting the jaw back. Anyway, he suggests doing a PSG with the TAP.
I'll contradict myself and go get the PSG while I still feel poorly mainly out of curiosity to see how the TAP works for my AHI and to gather more information to digest.

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BrianinTN
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Re: Post-Surgery Blues: Scoring Question

Post by BrianinTN » Fri Jul 11, 2014 7:35 am

It occurred to me that I should post an update in this old thread of mine—mostly for people who might be considering an oral appliance and the OASYS specifically.

Last month, I had my 6th (!!!) PSG—ostensibly to do three things:
  • 1. Test whether the OASYS oral appliance was resolving my apnea
    2. Look for non-apnea causes of sleep disturbance
    3. Titrate on ASV. Again. (This was at my doc's insistence.)
My AHI was still 24 with the oral appliance, which is pretty much no improvement. I also had the protrusion set fairly aggressively, so it's safe to say that it didn't help too much.

Nothing else turned up in this PSG, and I'm temporarily back on xPAP...which means I've resumed going from "tired" to "utterly miserable zombie." Hopefully my doc will figure something else out, since this isn't sustainable with respect to life or long-term compliance.

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