Newbie has concerns - your input appreciated

[revtim]

I am 66 and have just been diagnosed with OSA. Given I don't feel any different today than over the past 20 years, I assume I've had the condition for a very long time. My wife says I do anyway.
I always chalked being sleepy at times during the day to the fact I usually only get 6 hours of sleep a night.

Anyway, my primary physician suggested I get a sleep study and yesterday I got a call from the Sleep Dr's office saying I have OSA and I need to schedule another over night sleep so I can be fit with a CPAP machine. In my first appointment, the Dr explained that there were oral appliances that will treat OSA and that the best cure would be for me to lose the extra 50 lbs I am carrying around.
Now, without further discussion, he wants to put me on the CPAP machine. I called my insurance company and they say they pay 80% of the cost of a CPAP machine. A follow up call to the equipment store of this particular hospital informed me that, depending on the machine it would likely run around $1600 to $2000. This is when I began to get concerned at the pace things were moving.

I went online and checked Remstar (their most popular brand) and found them for sale in the $600 range. I can't help but get the feeling I am being railroaded into this whole CPAP thing. The doctor's office didn't call to set an appointment to discuss options... just to set me up for a $320 to $400 expense. I guess I'm the kind of person who doesn't just accept everything a doctor tells me. That's why I came here.

I can't help but wonder why I am being shoved down this path so quickly. What did people do about OSA before the invention of the CPAP machine? What about these oral appliances like Suad Device and the Respire - Dorsal Fin Appliance and all the other items? Are they just as expensive?

I am already effectively losing weight having turned vegan about 8 months ago... why not wait till I end it through weight loss?

I don't have the problem when I sleep on my side. Why don't I just set up my bed so I can't roll over onto my back. I got to sleep on my side anyway and apparently I turn back onto my side often after being aroused. (I am told) and always wake up on my side.

And finally, how do I know that investing in and committing to wearing one of these masks is going to make me feel any more rested?

Perhaps these concerns are normal... I don't know but I need to get comfortable that I have enough information to make an informed decision before jumping into a solution and would appreciate any input any of you could give to help me work through this.

Regards and thanks

[chunkyfrog]

First of all; losing weight is always a great idea; but its curative powers over OSA is vastly exaggerated.
My husband also has positional apnea, and tried positional training to stop his apnea, but was not successful.
He uses the same machine as I, one of the best machines out there. An Autoset can be the best choice for treating positional apnea.
You only get the higher pressure when an apnea occurs--(when you are asleep).
CPAP treatment will also make losing weight easier and help your other health problems in the meantime.
You want a machine that gives full efficacy data; be sure to read this blog, written by a member here.
http://maskarrayed.wordpress.com/what-y ... me-part-i/
we are here to help.

[Goofproof]

In DeNile, even before you are getting started, that's a bad sign. Your doctor is giving you misleading info, the odds of losing weight fixing your sleep apnea, while healthy are unlikely, except for a few. Oral appliances do more for the providers bottom line than help OSA. You may have had Sleep Apnea for the last 20 years too, you need more sleep too, but with S.A. your sleep is fragmented.

Profit drives all things. Sleep Apnea kills by inches, many times the cause of death is put off to other problems, but poor sleep wears the body down unnecessarily. Whether treatment works for you varies by you being willing to make it work.

Before Xpap treatment people died slowly at faster rate than necessarily, except for the ones in car wrecks sleep driving. Many are helped by treating sleep apnea, not all, but you have to be willing to make it work, not a high price for a better quality of life. Jim

[jen4700]

Revtim - your concerns are totally normal!!! All these topics (oral devices, weight loss, types of machines, etc, etc) have been discussed in detail on this forum. I would recommend a search for each topic and read, read, read.

CPAP is the gold standard for treating OSA. Did the doc give you your sleep test results. You should definitely ask for a copy, because then people on this forum can really help with all the details. CPAP therapy will help you lose weight. Will help cure your body from the inside out? Have you done any reading about how damaging OSA can be on your organs? And the oxygen desat can be deadly. It's important to take this seriously. Your doctor and DME (durable medical equip company) will probably provide little if any supportive info. That's why we're here.

Definitely read the blog that Chunky Frog posted - very important info about choosing a machine.

I think that it's good to be cautious. I think it's good to be skeptical. Take control of your therapy!

CPAP can be very effective if you are persistent and ask for help here. Getting the machine is just the start. You'll have to find a mask that works for you. You'll have to find pressure settings that work for you. You'll have to find humidity and temp settings that work for you. You'll have to make decisions about hose management. We're all here to help.

When you get the dx it can be terribly overwhelming. You've come to the right place to ask questions and get help!

[BlackSpinner]

Be aware that oral appliances can cost more then a cpap machine and only work for some OSA problems.

Weight loss, especially only 50 lbs, will probably not help. The weight is probably a symptom of OSA rather then the cause.

The prices you are looking at at you local shop (DME) are vastly inflated for insurance purposes. If you have insurance first find out who and what they cover.

There is usually a second study involving a cpap machine referred to as titration. This is where they figure out what works for you. After that you go shopping for a machine. Get the prescription in your hot little hand and don't let them railroad you to their favourite provider (unless it is an HMO)

Read Read Read.

OSA not only causes sleepiness but is involved with everything from high blood pressure, strokes, heart attacks, diabetes, dementia and erectile dysfunction.

[Pugsy]

Welcome to the forum.

Check with your insurance to see if they require the rent to own monthly thing or just do a straight out purchase right from the start. If it is the rent to own monthly thing then January is right around the corner and another calendar year deductible could be a mitigating factor in how much out of pocket expense you might have.
It might be cheaper in the long run to just buy your own machine.
You could still use a DME for masks and other supplies though.
So do the math and check out just how your insurance handles the purchase of the machines. Some insurance will purchase right up front and some require a certain period of time of proved usage. Don't rely on what a DME might tell you. Get the information directly from your insurance carrier.
Also might check with your insurance company to see if they have contracts with more than one DME (in case you don't like the first one).

I know all this is really overwhelming. You aren't alone. We have all been there.
Regarding the weight loss thing....yeah, it might help and it might not and it takes a long time to lose 50 pounds and keep it off. Don't try weight loss first. Get the cpap machine and use it and then try to lose the weight.
If you get it off and have another sleep study that says you are OSA free...more power to you. Some people are lucky in that regard. It isn't a guarantee though and you can't go without the cpap machine for 6 months to a year while you are trying to lose the weight. Besides if you use it now while trying to lose the weight you may find it easier to get those extra pounds off because you should feel more like doing the things that help us lose weight.

[archangle]

Apnea is slowly killing you right now. If you try to lose weight, it will be killing you slowly while you try to lose weight. The success rate for weight loss is rather abysmal, too.

Quite a few people who do lose the weight, don't cure their apnea. Or only get a little improvement.

Many of us here are very skeptical about oral appliances. A lot of people find they don't work. You'll have to have another sleep study to see if it works. There are a lot of snake oil salesmen who are selling oral appliances. They may claim "success", but "success" may mean "improvement," not "cure."

Some people are very happy with their oral appliances, though.

Read the links in my signature line about buying a CPAP if you go that route to be sure you don't get screwed by the DME (CPAP salesman.)

I can't help but wonder why I am being shoved down this path so quickly. What did people do about OSA before the invention of the CPAP machine?

They "died quietly in their sleep" from heart attack or stroke. Or lived miserable lives with the aftereffects of heart attack or stroke, poor sleep, and the other health problems from oxygen deprivation. Think of it as rapid aging.

If the sleep test shows you have apnea, you have it. The "minimum criteria" to diagnose apnea is pretty clear. Try and get a copy of your sleep test, and especially find out your "AHI" or "RDI" number from the test.

I don't have the problem when I sleep on my side. Why don't I just set up my bed so I can't roll over onto my back. I got to sleep on my side anyway and apparently I turn back onto my side often after being aroused. (I am told) and always wake up on my side.

You didn't know you had apnea before. You can still have apnea sleeping on your side. If you start sleeping on your side, how will you know you're not having apnea? Are you going to go pay for another sleep test on your side?

Perhaps these concerns are normal... I don't know but I need to get comfortable that I have enough information to make an informed decision before jumping into a solution and would appreciate any input any of you could give to help me work through this.

Your concerns are valid. Unfortunately, apnea needs CPAP. Anything else is mostly wishful thinking and has a much lower success rate and delays getting proper treatment. If anything the medical mafia doesn't sell CPAP hard enough because it's not as profitable as putting you on some kind of pills you have to take for the rest of your life.

If you get the right CPAP machine, it will check you for apnea every single night and tell you how you're doing. A dental device or other treatment gives you no info about how you're doing. Even when the alternative treatments work, your apnea often comes back as you age.

[revtim]

I can't thank you all enough for the starter info and the support. I will be getting my data/results from my Dr on Wednesday. I'll post them here and take it from there.

I wasn't planning on avoiding doing anything until I lost weight so don't worry about that.. and further, I doubt it's the apnea that caused my weight gain in the first place. I figured out that it comes from eating as much as I want/enjoy instead of what I need. Pretty simple really.

I've also discovered as I've been digging around that what you said about the oral appliances costing as much as CPAP machines is right. Damn they're spendy. I'm big on crunching numbers before moving forward and also not one for delaying things so I will get this figured out as fast as I can. Hopefully, I will notice a big improvement in how I feel once I adjust to it.

I do have one question. I am assuming my apnea is positional but expect I will learn more about that when I get my report. If it is positional and I only suffer when I am on my back, are there ways to simply make sure I don't sleep on my back. I much prefer lying on my side as I go to sleep and normally wake up on my side too but my wife says she has only seen me gasp when I am on my back. it seems almost too simple a solution but I have to ask.

Thanks

[zoocrewphoto]

Some people are successful with not sleeping on their backs, but most still tend to do it without some major discomfort methods (backpack with tennis balls, etc). The nice thing though is that you can get an auto machine that has a range of settings. For example, my machine is set for 11-17. When I sleep on my side (most of the night), it stays in the 11-13 range. When I roll onto my back, it starts going up, usually to 15 or so, and rarely up to 17. So, it treats me at every level of sleep apnea, and only uses the minimum of what I need. I have also found that I tend to sleep less on my back now, probably because my jaw drops open while on my back, and then I start to swallow air. Even while asleep, my brain knows to roll over.

[MidnightOwl]

A couple of thoughts.

Find out if your insurance company has "in network" DMEs. DME stands for durable medical equipment like cpaps and is used as a name for the businesses that sell that. If they do they may have negotiated a price with their in network DMEs that is much closer to the online price than to the 2000 you were quoted. And you'd pay 80 percent of that lower price.

You sleep study should show whether you still had apneas when you slept on your side. It breaks them down by the position you were in. If it shows you didn't have any AND you can sleep comfortably on your side perhaps you can forego other treatment. However if that's not a comfortable position for you you'll just be trading one sleep disruption for another. Talk to your doctor about what the sleep study showed. I only sleep on my side so I have no idea how to force yourself to do that if it doesn't come naturally alas.

Dental devices work for some people, not others. I'm not sure how reliably they can tell who they work for in advance. They aren't cheaper.

A sleep apnea diagnosis covers a wide range of severity - a distinction that's often not made. Try to get your doctor to explain just where you fall in that range and why he places you there.

[kims]

I am also a newbie. Here's some information that was passed along to me that I have found immensely helpful in securing equipment.

One of the best pieces of advice I found on this forum was to be exceedingly suspicious of Durable Medical Equipment (DME) companies and to know EXACTLY what my insurance benefits are for the cpap equipment. If you don't know, there is a good chance you will be cheated or overcharged for the equipment.

For example, my insurance covers 75%, but it is 75% of the allowance that the insurance company gives to the DME for providing the equipment. It is NOT 75% of the total cost of the equipment. My insurance company allows up to $750 for the machine and $91.75 for the mask. The DME must accept that amount and is not allowed to balance bill for any costs in excess of that allowance - they are required to write off any costs in excess of these amounts and cannot come back to me to pay any differences for more expensive equipment. My copay is 75% of the allowances or $186.50 for the machine and approximately $23 for the mask) So, I am getting an $1100 machine and a $200 mask, but my out of pocket costs will be a little over $200 TOTAL for mask and machine. Many DME's will try to collect the excess balance over and above what the insurance company allows for equipment. You need to find out from your insurance company exactly what their allowance to the DME is and whether their contract with the DME allows the DME to "balance bill" for more expensive equipment. You also want to find out what, if any limitations the insurance company places on the type of equipment you can get from the DME provider. I have Care First Blue Cross (CF/BC). After a couple of painful calls to their customer service division, I was able to extract from them the fact that 1. they do not dictate or limit what the DME can offer for equipment and 2. they do not allow the DME to bill for anything in excess of the allowance. You may need to call a DME provider first to get the "CPT" code that they bill the equipment under. If it helps, my understanding is that the universal insurance billing code for the machine is EO601 and the billing code for masks is A7034.

Some DME's limit your equipment choices based on what the allowance is from the insurance company. I called Apria, one of the big ones and they told me that they had a certain line of equipment (the cheaper stuff) and that was the only equipment that was "offered" to BC/BS patients. (Translation: "offer" = we are only giving you the stuff we can make the most profit on.) I ended up using Lincare because they were willing to get the equipment I wanted. The first rep I dealt with was great. The second one did try to bill me for the excess cost of my mask she was reminded that their contract with CF/BC did not allow her to do that and she quickly backed off.

I would first figure out exactly what cpap machine and mask you want. There is a website called CPAP.com that sells just about every type of equipment with user reviews. I used that site to look at different machines and their capabilities/limitations. I also went on line and read all the reviews I could locate on equipment I was interested in. There is a guy on Youtube who goes by the name CPAPHelp Desk (just go to https://www.youtube.com and type in a search for "CPAP Help Desk"). He does help and review videos on lots of different cpap machines and masks. He's terrible at handling the video camera, but his advice is very useful.

Once you have decided what you want for equipment, I would start calling DME's to see if you can get the equipment you want. If they try to steer you to one specific kind of equipment or don't allow you to choose what you want, walk away and try another one. My sleep clinic provided me with a list of DME providers and their phone numbers so I had a place to start. I called several of them before I found Lincare who was willing to work with me on what I wanted.

My Lincare Rep suggested that my doctor write the prescription for the exact machine and equipment that I wanted to end up with (which she was willing to do). I would recommend that you ask your sleep doctor to do the same. Choose your equipment first and then get the prescription written to specify the exact equipment and not the other way around. As long as your DME will work with you to get the equipment you want, having a prescription for it will make the whole process go much easier. My Lincare rep actually talked to someone in the doctors office and told them exactly what to write on the prescription. In addition to specifying the exact mask I wanted and the exact machine with model numbers, my prescription also specified upgraded (more expensive) heated hoses and a water reservoir for the humidifier that could be disassembled and placed in the dishwasher for easier cleaning. All of this fell under my allowances as long as the doctor prescribed it.

I was advised by numerous other users that I should look at machines that have data capabilities to see how effective the machine was during the night. I chose a Resmed S9 which has a menu that allows you to track your sleep each night - the menu allows you to see how long you used the machine, whether it leaked plus a bunch of other info that I can't remember off the top of my head. I understand that there is also software that I can get that will allow me to read the information on the removable chip. My doctor also has software for the chip so that she can make adjustments to the machine when necessary. The cheapo machines only have a data card that collects compliance information for the insurance company (ie how many hours a day you used the machine).

I don't know where you are located. I live in the DC area so my DME list has a few 800 #'s plus numbers in VA and MD for a dozen different DME companies. If you are interested, PM me and I can scan the list and send it to you. Even if the numbers are no good for your area, you can at least get the names of some of the large DME companies and then find numbers for them in your area. You can also confirm which ones are in your providers network.

I hope this was helpful information. I was told by several cpap users right up front that the DME companies are not to be trusted and will try to bill you in excess of your insurance allowances whenever they think they can get away with it. It sucks enough to need this equipment without being ripped off on top of it.

Good luck.

Kim

[revtim]

Thanks again for all the great input. While waiting for the doctor's appointment tomorrow, I decided to try forcing side sleep. I took a strip off an old sheet, tied several big knots in the middle then secured it around my chest with the knots in the back. Since I always go to sleep on my side, it was no problem falling asleep.
when
I woke up a couple of times during the night, still on my side and finally woke up in the AM after 6 hours of sleep. I did notice throughout the night a new and very mild discomfort in my hips, the kind that would normally make me roll over to my back. I would turn onto my other side and go back to sleep but it suggests to me that I was sleeping all night on my side. My wife tells me she only saw me once start to roll onto my back but right away roll back onto my side.

I feel more rested than usual this morning but realize that could be a placebo effect. If it turns out that my apnea only shows up on my back, this could be good news.

I will post my study when I get back from my appointment and really appreciate the confirmation my initial suspicions that acquiring a CPAP device, if one is indicated, is an economic minefield to be navigated slowly and with great caution.

Just out of curiosity, has anyone tried using either a hospital type bed that elevates your head to a reclining rather than prone position or a recliner where the same thing can be accomplished. Just wondering if sleeping half sitting up works?

[Pugsy]

Just wondering if sleeping half sitting up works?

It might help some but I can tell you from first hand experience that I can go to sleep sitting totally upright and still snore and still wake myself up gasping for breath. Not nearly as much as when laying down but I still do it.
I have been known to take a nap sitting up for an hour and when I wake up I have to pee something awful. You may think why is that important? Well it means that I was having apnea events sitting up and my heart was stressed and it was producing a stress hormone called Atrial natriuretic peptide (ANP) and that hormone tells the kidneys to go into overdrive.
It's very commonly known side effect of sleep apnea.

So while sitting upright might help some...it doesn't totally remove the possibility of the airway collapsing.

[BlackSpinner]

I will post my study when I get back from my appointment and really appreciate the confirmation my initial suspicions that acquiring a CPAP device, if one is indicated, is an economic minefield to be navigated slowly and with great caution.

Just out of curiosity, has anyone tried using either a hospital type bed that elevates your head to a reclining rather than prone position or a recliner where the same thing can be accomplished. Just wondering if sleeping half sitting up works?

It works for some people but the cost of a bed like that plus mattress is more then a cpap machine.

[zoocrewphoto]

I have found that I am really bad when I sleep propped up or in a chair. That is when I wake myself up gasping and snorting. I rarely woke myself up like when lying down. So, dozing off in a chair (usually while trying to watch tv), I am downright horrible. A few weeks ago, I did this, and I was voted out of the room.

I am better off sleeping on my side than sleeping upright.

My mom also has sleep apnea, and due to other pain issues, she has been sleeping in a recliner for over 10 years. Her sleep apnea was still very severe. We did a test with my machine for data, and her old prescription of 10 (and sleeping in a recliner) still allowed clusters of apneas, with one of them being over a minute long. That was in less than 4 hours of sleeping. She has a new machine and a pressure range now.