Which hospital to titrate @?

[Swordz]

I originally posted this on TAS, because it has to do with dental devices, but I could really use some advice on the situation in general. Go to it CPAP'ers:

I recieve my Somnomed MAS (dental device) any day now, and know it will take around 3 weeks to adjust the device as far as it will go. I am already looking into scheduling a sleep study to titrate the device and get specifics for reduction in AHI/RDI, but....

My original sleep lab is in a small town (~60K) but very nice staff and seem quite efficient at what they do, but they have never titrated a device. I called a sleep lab in a much bigger city, Louisville, KY (~2 million), expecting them to have some experience, but they have never titrated a device before either. The Louisville hospital does have several depts on staff including neurologists, psychiatrists, and pulmonolgists, as my original, smaller lab only has pulmonologists.

Am I better off sticking with my original lab in the small town, or better off with the much bigger hospital and more staff, even though neither have titrated a device? Any thoughts are appreciated, as I'm a "tight" schedule trying to get as much treatment in before my next school semester begins in Jan

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CPAPopedia Keywords Contained In This Post (Click For Definition): CPAP, AHI

[rested gal]

Hi Swordz,

I'd suggest you PM Titrator (Ted). Ted was a sleep tech and worked at a clinic in Kentucky. He's also a cpap user himself. He'd probably have good suggestions for you regarding where to get a special titration like that done.

You've come a long way since back when you first clicked that link to "surgeries, etc.", Swordz. You've done your homework like a champ! I've been extremely interested in following your progress, just as I have been the others like PaulY, Stoboy and Rick, who have been trailblazers for the path you're on.

Hope everything turns out extra, extra well for you. You deserve to have success with this!

My gut instinct is that it's not going to be the size of the sleep clinic that will matter...it's going to be whether the Director of the lab and the tech that would be assigned to do your titration are enthusiastically willing to do a "dental device" titration. And whether they understand exactly what you need to find out. If you can get in touch with SleepyStoboy, I'd also ask his advice about exactly how to explain what you do and don't want done for the titration.

The whole key to it imho is going to be a sleep tech who understands exactly what you're trying to accomplish. Won't matter whether the clinic is big or small if the sleep tech who handles your titration is smart and is willing to work with you on this.

The clinic you've been dealing with in your own town already "knows" you, so you have at least some relationship already going there. Perhaps you could make an appointment to go in and talk personally with the medical director of your clinic about this.

[CollegeGirl]

Totally agree with RG, of course.

But a side note: Swordz - what about the UK Hospital? Since it's a research hospital, maybe they might have done more in the way of "experimental" technologies? Just an idea.

CG

[Guest]

Its really amazing to post after reading what you suggested RG. I called the sleep lab and spoke with the lab supervisor, and she was REALLY, REALLY interested in titrating the device. She had never done one, but was very familiar with them and how they work.,

She actually suggested that I do a split study, with the 1st half diagnostic to see if my surgery had helped any with regard to AHI/RDI, and the 2nd half being the dental device. I am afraid that only allowing for the 2nd half of the study for the device will not allow enough time to go through all the increments on the device. She does understand fully that I need to find the correct advancement for max benefit, and also reduction in #'s for myself, the community, and to see if I need other therapy or a combo.

As for UK, they don't actually have a sleep clinic, which I found to be rather wierd. So it's looking like my original, smaller hopistal due to the encouragement and intrigue of the clinic supervisor to help out.

[Swordz]

Guested... Last post was me...

[Sleepless on LI]

Cory,

Sounds like she had a good idea, imho, about doing a split study. Aren't you curious to see if your AHI/RDI has come down from the surgery before you see what the device can do and how much further it can help bring the number down? I know I would be. And I think they can get a lot done in a short amount of time as long as you end up being able to fall asleep, so I wouldn't worry about not having enough time with the device in. Maybe they'll get the info they're looking for without the device fast enough and then have you put it in, so it may not be a true "split" study, but a biforcated one instead.

Did they say you should get used to wearing the device without titrating it first or do you have to do that right away? You realize what a trailblazer you are on this site, don't you? I'm sure we are all fascinated by what you're doing and so interested in hearing what the outcome of all your hard work will be. In addition, you know we are all keeping our fingers crossed that you finally get the relief that you deserve. Keep us in the loop, please.

[Swordz]

I'm definitely no trailblazer, as Paul, Sleepy Stoboy, and RickRed have all done the same thing on TAS. You don't here alot of dental devices here becuase it being CPAP only here (which is not bad). I am actually following thier advice, and also possibly getting the Pillar in Jan after I get a 2nd ENT opinion about whether or not my pallete causes any obstruction.

I am curious to see what the surgery did, but I know it will be very little if anything. Still, I'm hoping the surgery will help in not having to advance the device as far out. The device will be much easier to tolerate than CPAP for me, but you don't want to move the jaw out farther than you have to. I'm really nervous as to how much TMJ (jaw pain) i will experience.

With the dental device there is a 3 wk "honeymoon" period where I will advance it farther every couple nights, all way out to 10 mm. I will visit my dentist weekly during the 3 wks to check my progress, and see if there is any TMJ. After another week with the device I plan on getting titrated in my sleep study, around Jan 7th. I am worried about the sleep study becuase they have to advance the device to each increment (1 mm, 2mm, 3mm...) and I"m afraid I won't be able to get back to sleep that many times. I sleep like crap, and wires and a dental device won't help.

Thank you all for the suggestions and the encouragements. I try to nuetral in my CPAP/dental device stance. Whatever a person can tolerate, and as long as thier treated.

I'm gonna have a dental device party. It's RSVP only, but you all want in?

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CPAPopedia Keywords Contained In This Post (Click For Definition): CPAP

[Sleepless on LI]

I'm gonna have a dental device party. It's RSVP only, but you all want in?

I'll buy the airfare now if you give me the date. Can I bring a guest? I'm not sure if I can bring my walker on the plane

Are you sure they HAVE to start at 1 mm? That sounds unrealistic for them to expect you to be awakened that many times to try another setting. And how long are they giving you for this type of titration study? Also, if you do start to experience TMJ, is there something they can do short of not going forward with the expansion of the device? I used the Oracle in the first week of cpap and developed such severe TMJ on the left side of my jaw that would hurt when I first woke up, but the pain was pretty bad. I had never before or since had TMJ, but would have really needed something to deal with that pain. It hurt! But, then again, this device is probably custom made to near precision as opposed to an OOTB Oracle (my own acronym for out of the box). You probably shouldn't have that type of discomfort, if any.

Would there be any harm in taking a strong sleeping pill so you are really tired and can't wait to get back to sleep each time they wake you for an adjustment, just for that one night? Boy, I give you a lot of credit, really, for having the will power and determination to go through this. I understand cpap is not an option for you, but it's great that you didn't just give up and say "Oh, well..." So you're not a trailblazer on TAS but you are here.

[rested gal]

Cory, since the surgery you had done was simply (easy for me to use that word, I've never had it done! lol) turbinate reduction, that's not really expected to do much of anything other than make it easier (which is a good thing!) for you to breathe through your nose. Turbinate reduction isn't expected to reduce the OSA problem. I know you know that, but just threw that in for the benefit of others reading, who might not recall what surgery you had or why.

So....if it were me, I'd try to get the Sleep Director to agree to a very, VERY short amount of time to be spent that night at the beginning, without your dental device. Perhaps no more than two hours, or until after your first REM, whichever comes first. It probably is a good idea to get at least some baseline time recorded before starting the dental device titration.

I'd also ask, as Lori suggested, that after the device is in place they start at whatever advancement point YOU want them to start at. Each advancement interruption could result in wasted time, so starting at halfway to where you've been able to tolerate by that date might be a good idea.

Or....just a thought....perhaps run this by them: What about starting the dental device titration phase with it extended all the way out to whatever is the farthest advancement you've been able to use by that date. Plan on working their way backwards with the device.

After all, the most important thing is going to be finding out if the degree of advancement you've arrived at by that date is "enough." If they'll let you start the device titration portion of the night like that and work their way backward with the device, you all will still have a chance to get data about the lesser advancement points. Most of all, you wouldn't have to worry about, "Is there enough time left to get it advanced as far as I've been able to use it?" That anxiety alone could be enough to keep you awake too much that night!

[Sleepless on LI]

Great suggestion from RG to perhaps work backwards . Who knows? Maybe they do that anyway? I'd be interested in hearing what you learn, if you find out more before you go to this study, on how they plan on doing it. This is uncharted territory, as far as I know, on this site. And interesting territory at that.

[Swordz]

Are you sure they HAVE to start at 1 mm?

I'd think that they would really have to go through all major increments to show the results on paper. Keep in mind the device increases I believe in .25 mm advancements, so they wouldn't do 0.25, 0.50, all the way to 10mm but the major numbers 1-10 mm.

And how long are they giving you for this type of titration study? Also, if you do start to experience TMJ, is there something they can do short of not going forward with the expansion of the device?

The study is a full night, and I believe like RG said I'm going to keep the study without the device short, as I don't really think I'll see major results just from my surgery. If for some reason I do experience TMJ (which I prob will @ some point), usually you just go back an increment for a night or two or stay where you are until the TMJ goes away.

Would there be any harm in taking a strong sleeping pill so you are really tired and can't wait to get back to sleep each time they wake you for an adjustment, just for that one night?

I wouldn't think there would be harm in taking something in attempt to stay asleep, but don't some narcotics actually affect the function of muscles more during sleep? If the narcotic prescribed had that affect, the muscles could relax more possible causing more obstructions and apneas, resulting in false results.

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CPAPopedia Keywords Contained In This Post (Click For Definition): Titration

[Swordz]

Turbinate reduction isn't expected to reduce the OSA problem. I know you know that, but just threw that in for the benefit of others reading, who might not recall what surgery you had or why.

I also had septoplasty in conjunction with TR, but still I don't expect much improvement if any. If for some reason there is improvement, I doubt it will be enough to really make a dent in my 55 AHI.

So....if it were me, I'd try to get the Sleep Director to agree to a very, VERY short amount of time to be spent that night at the beginning, without your dental device. Perhaps no more than two hours, or until after your first REM, whichever comes first. It probably is a good idea to get at least some baseline time recorded before starting the dental device titration.

I couldn't agree more, but I definitely needed a suggestion for the "baseline time" for the study without the device. Girl, how are you so smart? I'm pretty sure you'd be Dean @ CPAP University!

Each advancement interruption could result in wasted time, so starting at halfway to where you've been able to tolerate by that date might be a good idea.

I'm quite anxious about where to start the titration advancement too. I worry about getting all the major increments in just for datas sake, but you would think I would need to start at some point significantly out, like 4-5 mm. The point of the 3 wk "honeymoon" is to have the device extended as far as possible, either to the extent of the device or extent my jaw can take. Having that done I will be able to go into the study and hit all the increments.

ARG! I've got so much homework to do, I need a tutor. Help me CPAP Dean!

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CPAPopedia Keywords Contained In This Post (Click For Definition): Titration, CPAP, AHI

[rested gal]

Cory, the more I think about it, the more I believe "backwards" will be the way to go. Talk to the medical director about it.

When the time comes to put the device in your mouth and begin the "dental device titration", have them start with your maximum advancement. Titrate it backwards. I doubt that there's anything written in stone about how to do this kind of titration, so heck... blaze your own trail there.

It's not like they are going to be able to keep advancing the dental device out beyond what you've found you're able to tolerate by that date. Or not much beyond it, anyway, I'd hope!

Since this isn't like a CPAP titration where they could just keep shoving more and more and more pressure if they wished, there's a limit to what they'll be cranking the dental device out to. Since that outer limit, so to speak, will already be known (by YOU!) before that night... heck...just start with it there. Any interruptions will then be just to move it back, not out more, just to see how many events show up at lesser points of advancement.

It will be a De-titration!! I like that!