It's been about 5 days since my last post. I have to say, I feel no different than I did then. Still optomistic however, as i dont feel the extra .5mm of advancement made any difference. I go Thursday (if i can't get in sooner) to get the shortest straps available for my device. If THAT doesn't advance me far enough to be effective, then i'll have to have my device sent back in so they can adjust the "poles" the straps attach to into a position that allows the straps to effectively adjust me out far enough. However, i'm pretty confident the 21mm (shortest straps) will be effective.

Thanks to Dr Kent Smith for his assistance during this process, he's a true asset to this community.

Please feel free to ask me any questions about my experience with sleep apnea and/or my dental device. I'd be happy to respond. I would only ask you post in here so that others may benefit, but if it's too personal, i will glady respond to any emails directly.

Keith
phorts@hotmail.com

Let's try this again. I just wrote out a lenghty post and it didnt take. ugh. So i'll give you the short version :D

Its been 5 days since my last post and I have yet to feel any benefit from my device at this advancement level (currently 23mm). I am still hopeful however, as I feel i'm very close. I go Thursday, if not sooner, to get my 21mm straps (the lowest).

Please feel free to post here with any questions for me about my experiences w/ apnea and/or my dental device. I'd be more than happy. Also, if you wish to email me you can do so at phorts@hotmail.com.

Thanks again to Dr Kent Smith for his continued support and knowledge during this time. He's a true asset to the community.

Take care and get some sleep!
Keith

I think the TAP-3 helped a bit, but it wasn't the solution I'd hoped it would be or even close. It took about a week to get used to it, then I had no trouble with it for a month. Then I started having jaw pain and had to back off from it. I had just started it again when I had my tonsils and adenoids out and the turbinoplasty... Since then, I've felt so much better, I haven't gone back to it. At it's best, the TAP-3 offered only minimal improvement, maybe 10%.

Three months prior to the surgery, I lost weight and trained myself to sleep on my side at the same time, so I can't guess how much one might have helped compared to the other. But I felt a significant improvement. I then went to the TAP-3, which helped a bit, but not a great deal, as mentioned above... I then stagnated at about 50% of the way back for several months before deciding to take my chances on the surgery.

The surgery also made a big difference and I felt almost instant and significant improvement. It's now 7 weeks since the surgery and I still feel much better. I also play a didgeridu, which a study has shown builds muscle strength in the throat and improves  apnea symptoms significantly; 20-30% for the study group as I recall.
.
I feel like I'm about 75 or 80% of where I want to be and much better than I was last summer. I have a life again... If I can lose another 20 pounds, maybe that will do it. I don't know, since the figures I've put in here are only based on my feelings and not on sleep studies or any sound science. I want to keep trying to get better and when I feel I'm all the way back, take another sleep study and find out... I do know that when I now take those Q & A sleep questionaires (do you snore? Gasp for breath? wake up tired? Fall asleep in the day time? etc) I answer "no" to every question and there is now nothing in those tests to indicate that I have apnea (I know I do because of the sleep studies). I used to light those questionaires up like a Christmas tree answering "yes" to almost all questions.

So, just to take a wild guess at what helped.

Weight loss, side sleeping, quitting drinking, didgeridu playing   50% (I undertook all these therapies simultaneously so I can't separate them, though I believe side sleeping was the most beneficial)
Surgery   30%
Tap-3 I don't know.

Regarding training yourself to sleep on your side. I tried the tennis ball, but I found ways to wedge it in my arm pit and sometimes just slept on top of it. It didn't work. What I ended up doing was getting a firm foam sheet and rolling it up to the size of a bowling ball, then tying it tight. My wife made a velcro belt and sewed it to the foam. I wore the belt up around my chest, which gave me this huge ball in the middle of my upper back. I couldn't possibly roll over. When I wanted to roll over, I had to wake up, lift myself up so the huge ball would slide under me and I could go to my other side. After about three weeks of this (not especially pleasant) I no longer needed the ball. I just keep a leg pillow between legs to remind me.

It didn't occur to me at the time I might just as easily have filled a back pack with the foam, which would have done the same thing...

Phorts <<< "there was some pretty hard evidence that, not only did i sleep on my back, but nearly ALL of my apneas and arousals occured in that position.">>>

That was your quote and it was pretty much the same with me... It seems likely that learning how to sleep on your side, regardless of the discomfort in learning how to do it, may have great long-term benefits and might do you more good than just about any other treatment... The key for me was getting through it to where I could sleep with it and ultimately didn't need the apparatus any more... Sure, the first three or four nights were tough, but I got used to it... And it was much more tolerable than feeling like !@#! every day... As stated in my previous post, I have 3 times as many apneas on my back as on my side, so the benefit was obvious. In your case, it might even be more.

After struggling with the CPAP machine and getting no benefit (and no sleep) from it, these other treatments seemed easy by comparison. It's sort of like having a big cut and instead of using one large bandage to close it (CPAP), I've put on six or seven Band-Aids and it's not bleeding much any more.

Thanks for posting your experiences so far scriptdog. Would you mind telling me your AHI or RDI in the supine position and then in the non-supine? I would like to see how it works out in my formula, knowing your experiences. Let me know if it's an AHI number or an RDI number.


_________________
Kent Smith DDS

Ok, lot to update you guys on.

First of all, Scriptdog, thank you for in depth report of your experience with your apnea adventures... I'm happy for you that you have finally gotten your life back and wish you luck in finding the complete solution. I think i'm in the same boat with you as far as the path to success, and i have some new theories as to what's going on w/ my treatment and potential solutions. So thanks for that, and who knows, maybe it will even help you find that extra 10%!  

Ok, so here's the scoop. I actually got my shorter straps put on yesterday. Even though I wanted the 21mm straps, he insisted i stick w/ the 1mm advancements so as to not "shock" my jaw muscles and create a spasm that would essentially render me unable to wear the device for weeks until the inflammation went down. So he scared me into it, is what i'm saying, and... well, he's the doc, i'm gunna agree. So i got the 22mm straps and there's only 1 left to go after this, which I get next Tuesday. The other thing he's been doing to my SilentNite is grinding out the back part so that ONLY my front teeth touch. He says i've been grinding a little on the back and this is bad, for whatever reason i'm not sure, so now only my front teeth touch. It feels nicer and more balance in the mouth, so that's good. Again, the 1mm advancement (translation between .5 and .7mm net advancement) doesn't feel all that big of a jump forward, but more on that.

Last night again, i'm waking up a bunch throughout the night, usually around 2:30-3:30 AM ....which ends up being about 3 hours after i fall asleep, and again several times throughout the morning, just as I had been without the device. Still feeling unrefreshed, and having the same symptoms of fatigue, loss of focus, motivation, sex drive, etc, etc, etc......

Here's my theory as to what's going on that i've discovered from what Scriptdog has been saying, Dr Kent Smith, and my own experience. I noticed last night that when the device is in, it's more work to open my mouth for air. I can't imagine that during the night, my mouth opens like it used to before. Whereas I was strictly a mouth breather (and why i needed the dreaded Full Face Mask for CPAP) I am now a nosebreather. There inlies a problem, in that I have a deviated septum and can't breath very well through my nose, especially when sleeping on my side and my pillow (feather) is pushing up on my nose essentially cutting off air supply. I may not be having any more obstructive apneas from my tongue, but possibly i'm having Pillow Apnea? Ok, so that's just a theory, and if Dr Kent has any thoughts about that i'd be very interested to hear them.

So, if this is true, I would DEFINITELY need to get my nasal problems taken care of, because You can't cure a breathing problem if one of the holes along the way are blocked. I figured this wouldnt be a problem since you can always breath through your mouth, but if you can't OPEN your mouth due to the nature of the device, then you better be able to breath through your nose right?  This also might suggest why Scriptdog was unable to have success with his oral device until he had his nasal passages cleared up..... Again, this could be a long shot theory and i'm no doctor so PLEASE do not take my word for it but it's a good question for your doctor if you suspect this problem with yourself...

I'm going to try some breathright strips and maybe some nasal spray to help w/ the nose and maybe go from the feather pillow to a towel rolled up under the neck so my nose is free from being "pushed" shut...

On the oral device front, jaw muscles feel a little strained today but i think they'll chill out, and my teeth were a bit sensitive this morning with the added pressure, but nothing intolerable by any means. I do feel that the shorter straps provide an "easier" breath and the way i test this is to try to relax all the muscles in my face and throat to "simulate" sleeping. I was able to create a little purr with the previous two settings and really had to focus and try to get anything at this step. I'm thinking the 21mm straps are gunna be the sweet spot. Another reason I want to go w/ the 21's is if the 22's are good for most nights, I want to have the extra "clearance" in case I get allergies, get congested, or god forbid, have a drink!


On the insurance front, I was given some good news and bad news. The bad news is that I was told that my SilentNite device is NOT covered under my insurance because it is a "Snoring Device" and not a "Sleep Apnea Appliance". So there goes $600.

The GOOD news is, that I AM Covered for a Sleep Apnea Appliance, so my SomnoMed will be covered. I have Anthem Blue Cross Blue Shield New England and they're an HMO. I have the code they billed it under somewhere around here if anyone's interested, but the technical term again was "Sleep Apnea Appliance". My dentist tried to bill it under one umbrella as a "treatment plan" but it got denied, so he had to submit separate claims for each device and they only approved the Somnomed. I now have to get an insurance referal for the appliance from my PCP, a letter of medical necessity from my neurologist and a copy of my sleep study. Not sure if all that is necessary because the insurance company won't talk to me, but my dentist said that the more the merrier, and I don't want to leave anything to chance when dealing with these people....I'll keep you updated with that.

So, the current plan is to try out my new straps and experiment with a new pillow setup while trying to alleviate the nasal blockage with some OTC remedies. After i get the shorter straps in 1 week my Dentist wants me to use the device for 6 weeks before having the SomnoMed made. However, in my previous post I mentioned that I will have to get dental work done before having the new device made due to possible changes in teeth shape/structure and I wouldnt want to have the new $2000 device not fit...cuz you know how insurance companies work...if you get them to pay for it..they're only doing it ONCE, as it's NOT considered DME (Durable Medical Equipment) in which they will periodically pay for replacement (at least that is my understanding).

I will also be looking into having the nasal surgery to remove my adenoids, asteroids or whatever else is up there, removed.....

to be continued!

Kent

Suppine my RDI was 92.7 and AHI was 68.9
Right side RDI was 45.8 and AHI was 18.9
Left side RDI was 16.0 and AHI was 9.6

Total AHI 36.3

OK, Keith. Several thoughts here. First, you now have an "anterior discluder" with the Silent Nite. You need to decide if you want the discluder built into your SomnoMed, as they do this for an extra fee (I believe $30 in the lab bill) - this option is for the dentists who believe in anterior disclusion ala the NTI. I won't get into that discussion here.

Next, there was a book written in 2005 on the origins of biphasic sleep, when there was no electricity. Many believe that if you wake up consistently in the middle of the night, your body is still genetically wired from a previous century, and IF you can adapt to biphasic sleep with your work schedule, it would be a good thing for you. Just google it for all kinds of information.

I definitely agree with seeing an ENT to clear up any nasopharyngeal obstructions, and always suggest this to my patients as a first course of action. It is SO mportant to be a nose breather that I would strongly recommend anyone reading this to do what they can to become one. The built-in filters are there for a reson.

Yes, the Silent Nite is considered only an anti-snoring appliance, but that's because thay have not pursued FDA approval. After all, they can sell other divices for this, such as the TAP, which Glidewell markets, so why bother?

Much more to say, but I have Lost to watch.


_________________
Kent Smith DDS

Scriptdog wrote:

Kent

Suppine my RDI was 92.7 and AHI was 68.9
Right side RDI was 45.8 and AHI was 18.9
Left side RDI was 16.0 and AHI was 9.6

Total AHI 36.3

OK, scriptdog. I don't know your total time in non-supine sleep from these numbers, so I can't use my formula as is, but it appears as if you have about 3 times as many respiratory events in the supine position as you mentioned. (maybe only 2 times as many if you slept on your left side only a few minutes). Regardless, I would put you in a category likely to benefit from an oral appliance. Regrettably, your joints would not allow this at the rate you advanced your mandible, so we may never know. At some point, you might try again, but advancing very slowly would be the ticket.


_________________
Kent Smith DDS

i am using cpap full face mask and sometimes nasal swift pillows with a chin strap; with the nasal pillows if i am sleeping in the supine position i do snore sometimes, even using the chin strap; i wonder what can i do to keep my mouth closed to avoid snoring and get the full benefit of this therapy? i also tried to get a klearway oral appliance but my health insurance, unitedhealthcare, did not want to cover the appliance; i wonder why did they refuse to pay for the appliance if my medical diagnosis is severe obstructive sleep apnea and it should be covered by my medical insurance; this is not a dental problem, but a problem of my tongue, why did they deny the coverage of the appliance? also, Dr. Ken i would like to know your opinnion about this oral appliance, if that is the adequate or if i do have a better option regarding oral appliances; i have read that oral appliances are for mild sleep apnea; so, what is your opinion about all these doubts; what about full breath solution appliances? thanks in advance for your reply and best regards.

Hey Melhajj,

The Klearway is a nice appliance, as are many of the mandibular advancement titratable appliances on the market. What makes one appliance better than others usually revolves around the willingness of a specific patient to wear it consistently. If you wear the Klearway, it's a good appliance. If not, it's a bad appliance. Alan Lowe, the inventor is probably the foremost sleep researcher out there in the dental arena, so he shold know how to make an appliance.

Having said that, the SomnoMed has become my favorite, simply because more of my patients are compliant with it than any other. However, if your goal is to wear an appliance WITH the CPAP (combination therapy), and your issue is trying to keep your mouth closed, neither the Klearway nor the SomnoMed will help you do this (unless you ask for the elastic clips on the SomnoMed, which help keep the arches together). The TAP3 might be your best choice.

If you simply want to try an oral appliance,  there is never a guarantee that medical insurance will cover it. If you have severe OSA, they usually will, but you must sign a CPAP intolerance affidavit, and your dentist must do everything correctly to get you covered. If your specific plan says they never cover oral appliances, there is really nothing you can do about it. However, if your condition is that bad, you should be able to find the money somewhere. Life is too short to contunue to live with severe OSA.

So, you read that all oral appliances are for mild sleep apnea, huh? That was written, evidently, by someone who knows very little about them, so try not to read anything else that guy or gal has written. I have treated many moderate and severe OSA patients successfully with oral appliances, although there is no way to know without a doubt that I can help someone presenting with OSA. This is never a slam dunk proposition.

My knowledge of the Full Breath System is rather sparse, but I believe it has merit, and hope to try it soon on a patient.

By the way, have you had an ENT consult to make sure your nasal airway is open? This alone could be the reason for your continued snoring. If the chin strap is sufficiently keeping your mouth closed, the snoring is coming through your nasopharynx. If you are still snoring through your mouth, and no chin strap can keep you closed, I would suggest combination therapy.

I hope this helps, but more importantly, I hope you get proper help soon, so your quality of life improves, and so you can post a success story here!


_________________
Kent Smith DDS

your great help, such kind of doctor should be around patients more often; i will review in detail all the information you have just answered. Also, i do have BIG questions about  this disease; for example, my doctor told me that i do have a big tongue and that might be the reason of my severe OSA, if i have a big tongue since i was born, then shall i guess that i do suffer from sleep apnea since i was born? i am not an obese person at all, i have like 7 pounds of extraweight, which is not very much, but certainly it is around my waistline accumulated; i did not use to snore when i was a child, the snoring started around twenty years ago but not as loud as continous as it was before the use of the cpap; second question: i have a long history of gerd which has caused esophagitis and i wonder which one appeared first, the GERD or the sleep apnea eventhough all the medical articles talk about a correlation between these two diseases, but, my question is, which one was there in the first place? third question: since the respiratory center is regulated by the autonomous nervous system, is that the root of the problem? that there might be something wrong with that regulatory system? are there any studies researches that system where the main cause might be rooted there?  i wonder about all these things, because if we do not find the real cause of the problem, how can we address the problem? in my case, about my big tongue about the main cause of my problem, wouldn't it be easier to have something that pulls my tongue out while i am sleeping, like a tongue sucker or some kind of similar artifact; what i see about this tongue sucker is that it is not to be used for long periods of time since it might affect the circulation of my tongue; the surgeries about cutting the tongue sounds very primitive, in my opinnion; and the other kind of surgeries does not seem to have a very high success rate; it sounds that must of the surgery is still in the experimental stage, what is your opinnion about these surgeries? the other options that seems realistic but also very difficult to decide to carry on, is a tracheostomy, which would be my last choice, when i think about it, i do think about intubation; what ideas come into your mind about procedures that might help in this disease?best regards Dr. Kent and i know that in the back of your mind you are also searching for answers, sometimes the most creative things come when we are just alone and focusing on the problem, when there is not disturbance, then we let our minds be free and create.

Melhajj,

thanks for sharing your story. While I can't comment professionally on your specific situation (and we all must understand that while most of us here suffer from the same "sleep apnea", there are many different forms and EVERYONE, is Different) I can say that it sounds like an Oral device will help you because it actually keeps the tongue muscles taught (as if awake) by bringing the jaw forward. If I were in your situation (and i pretty much am) I would at LEAST try an oral appliance, even though the out-of-pocket expense is great. The impact on your health is a far greater expense than any dollar amount. There are many options for you (cheaper appliances, payment plans, etc). My SilentNite cost me $600, and while it is not the best appliance out there, it does the trick, and at the very least, will hold you over until you become more financially secure. As far as the surgeries go, i also think the current prodedures that they have right now (at least the ones i know about) seem pretty archaic. This is the #1 reason I tried my hand at CPAP despite my absolute hatred for it. Besides, most insurance companies won't pay for the surgery unless you've tried CPAP. Unfortunatley, both my UPPP Surgery and my trial with CPAP have largely been failures. I don't regret the surgery I had, or my trial with CPAP, or the loss of quality life during those 2 years.... I just look at it as what needed to happen to get to where I am now.... Anyways, i'm sure Dr Kent and others here can provide a bit more information for you, but try the oral device first before trying all that crazy surgery....

 Ok, so my current report is basically more of the same, still not feeling any better. Here are my latest findings:

1. Still waking up around 2:30-3:30 like clockwork. Able to get back to sleep quickly but wake up periodically throughout the morning (5-8).
2. Breath right strips are very cool. I feel like i can breath better through my nose, although this has not helped in me feeling refreshed
3. SilentNite straps are very taught during the first night or two after the new ones are placed on, but after a few days they feel like they start to "stretch", essentially negating the adjustment they provided.


On that note, even though i feel like my dog died this morning and i feel sick thinking that another Manning has a ring, ugh... i did NOT wake up last night at my usual 2:30-3:30 window. It might be attributed to the fact i was completely drained from coming down off that anxiety high I got while watching the demise of the best team in football history...or the two white russians i drank....but anyways...i was happy about that turn of events.

I did NOT wear a breath right strip last night, but felt i had good nasal clearance when i went to bed. I'm going to continue to wear them though because i do feel they help....and they definitely don't hurt.

I'm getting my final SilentNite adjustment tomorrow. Down to the 21mm straps I go. Hopefully, this will provide the right amount of clearance i need to eliminate my breathing disturbances...and finally get a good night's sleep!




One observation i've made over the course of my treatments, is that I seem to have more of a problem breathing OUT, than i do breathing in. The sensation i feel is that when i'm breathing out, sometimes my upper airway closes, as if someone closes the lid suddenly during my outward breath. Originally i felt that this was very unique and could be the reason I was unable to get CPAP to work for me, but now i'm not so sure. Does anyone else have this sensation? I know it's my upper airway because air is then forced out my nose. If it were lower in the system, no air would get out at all. It's definitely my tongue getting in the way, and when manually advancing my jaw, i'm unable to reproduce this sensation. Maybe this is an indication of something.... maybe not.

Dr Kent, i did look into biphasal sleeping and, while very interesting, do not think it would work for me. My lifestyle would not allow it and it's almost impossible for me to take a nap even given the perfect conditions.....


Pats fans... it's hard to look on the bright side right now...but as soon as this dark grey cloud rolls out, the world champion Red Sox will be in town..... We're still title town...

Thank you so much for your support and patience; after reading both post i want to tell Dr. Kent that one of my doctors, the first one that sent me to make the studies, is an ENT, he checked my nose and the oral cavity, he said that the nose was ok and that the problem was the tongue oclussing the airways. To you, Phorts, i have a question: the appliance that you use Silentnite was prescribe by your sleep apnea doctor? is it for severe obstructive sleep apnea? I wore the chin strap so tight that i got a red mark on my chin. Fortunately, yes i can buy an oral appliance for 600.00 out of my pocket, but, i wonder, it will really work for me? is that what i really need? i went to see another sleep apnea doctor and that one suggested klearway oral appliance, which would cost me 1000.00 since the insurance does not cover any oral appliance; isn't it amazing that the medical insurance refuses to pay for this oral appliance when the medical diagnosis has nothing to do with the teeth, but with the tongue and maybe something disfunctional in the autonomous nervous system; i would like to air my frustations about the medical insurances but, let's better forget about it; this is not something that i should be airing out here; anyway, everything is  about trying to find the right thing to help me with this disease, if the klearway or silentnite appliance do not work, what else shall i try, and how much money will it cost me? i can not just go and spend money and money, when i have to put two kids to college by september; i would vote for democrats tomorrow! if we could be sure that in the ideal situation we will never be sick and that i will have all the money for any disease that might come on my way during my lifetime as well as for the rest of my family, that nothing about cancer, diabetes, sleep apnea, heart problems, etc, all these diseases supposed to be of all age, then i will disregard the importance of not having healthcare insurance forever, but that is not really the case, some time during our lifetime we, my beloved ones and myself will need a mountain of money just to have medical insurance when one of those disease attack us, and i do believe this is the case for almost everybody, that is one of the reasons why i should vote for universal healthcare; well, best regards to everybody and take care.

Melhajj,

Thanks again for your reply. To answer your question, yes, the device was prescribed by my Sleep Doctor (His background is in neurology but is now practicing sleep medicine exclusively). I have what is considered mild sleep apnea based on a commonly accepted formula that <30 AHI is considered mild. My AHI is 29. The Silent Nite is regarded as a SNORE DEVICE as it has not been approved by the FDA to cure Sleep Apnea. Which is also why Insurance companies will not pay for it. Im finding that i dont THINK that it has cured my apnea, but i do feel it has done a good job at reducing my snoring, and possibly in effect, reducing my apnea. I'm placing a lot of hope into the SomnoMed (FDA Approved for Sleep Apnea, covered by my insurance) that it will reduce my AHI to below 5... Dr Kent can and has spoken on the Level of apnea that can be treated w/ an oral device, but basically, it's all about the individual situation....

quick update on me..

been using the 21mm straps. No change in feeling better. Doc says (now he says this) that the silent nite's job was to reduce snoring, not apnea, and that i'll need the Somnomed. I pretty much knew this already, but i feel i was being misled. Regardless, I now have a backup should the somnomed break, need repair, etc, and it DOES reduce snoring siginificantly.

I got my letter of medical necessity and forwarded on to my dentist who will then submit my claim to insurance. insurance guy told me they will cover at no cost to patient, but we'll see.

BEFORE i can get my somnomed my dentist wants to do my fillings first. If i get the somnomed made first, then the fillings, the device might not fit properly. Thing is, i need 6 fillings and at $170 a pop, that sucks. But, i gotta do what i gotta do.

I tried a sleeping pill (ambien) and was able to get through the night, but felt weird the next day. That's the whole thing i'm trying to fix...so i'm all set w/ that.

Been off and on as far as sleeping through the night or waking up at 2-4am....

will update more later.....

Thank you for being so kind phorts; do you suffer from insomnia or why are you taking sleeping pills? i try to exercise everyday, walk in the treadmill at least 30 minutes, that, relaxes me and makes me tired; my blood pressure is under control eventhough i do take medicines for blood pressure, but i have cut the amount of salt in my food, drink green or white tea, and the exercise really helps me a lot; maybe you need to exercise, if you are not doing it, so that you feel exhausted and just hit the bed; keep us updated about your new appliance; also, since you said that your doctor is a neurologist, and wondering if you have have some memory problems, in case that you have had them because of the sleep apnea; if that is the case, you should tell your neurologist/sleep apnea doctor about it; i am going to have a mri of the brain, because sometimes i feel confused. take care and best regards. Wonderful people like you keep this forum great!