Sleep Apnea, to treat or not to treat!!!

[jnk]

My personal take on why most people sent for sleep studies are found to have OSA is that, for the most part, it is only those who obviously have OSA who get sent for sleep studies in the first place. The lab findings are mostly just an exercise in verification of diagnosis, a collection of proof of response to therapy, collected mostly for the benefit of the payers and not so much for the doc who already knew the result or the patient.

I have as many conspiracy theories as the next guy. But in this case, there is no smoking mask.

Although the tests are mostly for payers, the titration study provides some of the most valuable information a patient can have, in my opinion.

[carbonman]

I stopped on my ride today to shed some gear as it warmed up.
This caught my eye.



Maybe we need to post the risks of cpap.

Any use of cpap therapy has inherent risks.
When you use cpap therapy you may encounter
a variety of unexpected mechanical, psychological,
physiological and/or business/insurance conditions,
that could include, but are not limited to:
taking control of and enhanced quality, of your own life.
These conditions may change throughout your therapy period.
You could improve the quality of your experience and life
by understanding these risks and taking the appropriate attitude.
Users of cpap therapy assume all liability for all risks,
as this is associated w/and performed by, each person,
alone, in the dark of the night.

[cyklopps]

Thanks again for the concern of all of you. Last night I again spent the entire night wearing my borrowed Respironics M series. I have now tried it for about six nights. In the next week or two I will go for the overnight study to get my machine set up properly for my specific situation. I will see how I feel after a period of using CPAP and will let you know how it goes.
Although I think I might of upset a few people, the sheer number of responses shows interest in the topic. These kinds of discussions are going to become more common no matter what the disease, as health care costs skyrocket and cost-benefit trade-offs have to be made. The same goes for all the various screening tests that are out there and can save lives. Where to draw the line on some of this will dominate the national debate on health care for years to come. Phil

[BlackSpinner]

These kinds of discussions are going to become more common no matter what the disease, as health care costs skyrocket and cost-benefit trade-offs have to be made. The same goes for all the various screening tests that are out there and can save lives. Where to draw the line on some of this will dominate the national debate on health care for years to come. Phil

Comparing cpap treatment to excessive testing due to American craving for suing over everything is comparing apples and oranges. I paid for my own cpap, many people do. It cost me $2000 Cdn - divided over 5 years that is $400 per year and it only cost that much because I didn't know enough to order on line at the time. That is $400 per year to avoid much, much higher costs. There is really nothing to debate here, many people pay much more per year on drug costs or gym memberships.

[jnk]

I believe that, historically speaking, once it was discovered by some brilliant men and women just how far-reaching the OSA problem was and is, and how relatively easy it was to treat, a conscious decision was made by the research scientists to bring in the business people a bit early in order to create a form of testing and organizing treatment that would generate enough money to attract good doctors and equipment manufacturers. I don't think there was anything deceitful in the way that was done, or particularly greedy, but the process got rushed in order to save lives, and a backlash to that is natural.

Add to that, though, the common feeling among primary docs that treating complicated conditions can't possibly be as simple as pressurizing the airway (thus the need for educating docs) and then the common initial reaction among patients that PAP therapy sounds somehow unnatural and unattractive (thus the need for educating patients and the public), and you then have a real recipe for getting reactions like cyklopps' reaction among many thinking people, when it comes to OSA and PAP therapy.

My opinion is that this has been a good thread: Good honest questions. Direct honest answers in reaction. A great exchange of information--technical, emotional, and meaningful.

[idamtnboy]

An article in today's local paper discusses sleep apnea and some of the treatments, including custom mouth guards. I couldn't believe the cost quoted for the dental guards, $1200 to $2500. CPAP is only half to 3/4 of that. CPAP is the therapy cited as the most used, but there are occasions, or patients, where it doesn't work. The article is a syndicated offering so many other newspapers probably carried it today, or will or have already.

[Geminidream]

Dear cyklopps

I understand your being skeptical about whether something is medically necessary. Given the fact that medicine in this country is way too money driven, I'm convinced that more harm than good comes from that. I also would ask that you just do as much research as possible on the effects of OSA over long periods of time. I am one of those who knew they had a problem...felt awful, tired, brain fogged and barely functional some days. It was slow getting to that point, but my bed partner certainly was aware too. Once I got past the "its not sexy, why me, I feel like a dork" stage and started feeling like my self again, I forgot all about those silly concerns and I wear the cpap every night. Perhaps you will too.

Above all else, keep an eye on your health and if you see it change, be pro-active.

Melissa

[cyklopps]

Thanks again for the nice posts and your concern. Blackspinner, how does the Canadian health system deal with Sleep Apnea. Does everyone get the care they think they need or are there limits? Does it differ by Provence? Your situation seems ideal, with you own machine but do you need a prescription for something as small as needing a new mask? How often do you need to adjust settings and see if your machine is doing its job? Here in the US the cost seems much higher especialy if your DR wants you to have repeated sleep studies and him charging to read them, plus the cost of the machinery which is by his prescription. I called some local hospitals here following my decision to try CPAP, and believe this!!! One hospital's cash price for a sleep study was $14,000. Most insurance companies here have contracts with the hospitals as does mine. I have a 20% copay and my sleep study will cost me only $450 if I pay my 20% up front. Can you imagine not having insurance and needing this!!!!!!!!! Phil

[Mr Bill]

For me it was the agony of being sleepless for months and afraid to even try sleeping for fear of not waking up. I was so tired even with coffee. It became so hard to go on hikes because I lost strength and endurance even as I gained weight, and aches and pains. Getting actual sleep again has opened up my life again. I was in a downward spiral, now I am so incredibly awake during the day, multitasking that was difficult is now simple. Instead of dreading adding on a new task in the lab where I work, I just do it. I had a hole in my psyche where all my energy seemed to drain out. Now its like an artesian spring and I can be prolifigate and it hardly costs because there is plenty more energy where that came from.

[Jade]

I haven't read the whole post, but something cyklopps said along the way clarified some of my thoughts...

I was asymptomatic* - as best I can tell - before diagnosis. After starting cpap treatment, and using it now for several months, I have experienced a noticeable and measurable deterioration in daytime functioning and overall well-being. This response to treatment is somewhat atypical, according to my dr.** I think I have been titrated correctly, but I'm not expert in that area, so can't be sure.

Of course, I can't find any studies that have identified people with a similar profile and followed their mortality, correlating it to cpap treatment. And I can't discount the very real possibility that since I feel and function better when not using the machine than using it, that not using it might result in perfectly acceptable, i.e., comparable disability/mortality. Adding quality of life into the equation, based on my personal experience, brings me to wonder what proportion of "non-compliant" people drop out of treatment because of comfort/psychological/mechanics issues, and what proportion either don't feel better or even feel worse after trying it.

*Perhaps not 100%...it's hard to tell with exactness and so easy to quibble over degree of symptoms...for example, I apparently do snore on occasion, albeit infrequently. Do we call that a marker for OSA or not? Many - in fact, most - of the symptoms I've read of in connection with OSA I don't have at all.

**My dr also reports that a significant percentage of the practice's OSA patients don't experience much increase in functioning; a situation that seems to be under-represented on this forum.

[BlackSpinner]

Thanks again for the nice posts and your concern. Blackspinner, how does the Canadian health system deal with Sleep Apnea. Does everyone get the care they think they need or are there limits? Does it differ by Provence? Your situation seems ideal, with you own machine but do you need a prescription for something as small as needing a new mask? How often do you need to adjust settings and see if your machine is doing its job? Here in the US the cost seems much higher especialy if your DR wants you to have repeated sleep studies and him charging to read them, plus the cost of the machinery which is by his prescription. I called some local hospitals here following my decision to try CPAP, and believe this!!! One hospital's cash price for a sleep study was $14,000. Most insurance companies here have contracts with the hospitals as does mine. I have a 20% copay and my sleep study will cost me only $450 if I pay my 20% up front. Can you imagine not having insurance and needing this!!!!!!!!! Phil

It is provincially controlled. Sleep studies are covered 100%. Depending on where you are you might get a home sleep study first or home titration (much much cheaper) Doctor works for the hospital. If you have insurance from work (for the extra bells and whistles) you can get in to a private sleep study clinic with that.

Cpap depends on the province. Some cover it under their drug plans some don't. I need a prescription as now I order from cpap.com. I can get new prescription any time I want. My pulmonologist has no issue with where or how I purchase and is totally for patients taking control of their therapy and said as long as my AHI is kept under 5 then there is no reason for me to come back. I adjust my own pressures keep track of my therapy, If my 80 year old mother could handle her insulin I can handle this simple little task of breathing air.

[tschultz]

From what I've seen so far I question how, with so many people on xPAP with no data collection, a system set-up to make DME and doctor's wealthy, and keeping patients in the dark of what's really going on just how many people are, or were, on treatment that was lees than optimal and then stopped using it. In many cases I fear many people may still be on less than optimal treatment and have no idea of it.

While I do think there are many things within the medical system, no matter what country you may live in, that need to be "fixed", I also consider medical science to still be in its infancy compared to some of the other sciences, with very few real advances made only after the mid to late 20th century. I do however feel comfortable that even by now that the evidence is clear that OSA is a major contributor to a large number of other health issues if left untreated. True, it may be only one contributing factor but it is also one that for many can be brought under control and thus removing that contributing factor.

I agree that at some point in the future that more will be understood of the complex relationships between the many health issues, and it is true that some of these new findings may contradict current thinking, but if you research xPAP treatment there are VERY few potential side effects and the benefits far outweigh any potential downside.

You ask about going forward when having to pay the costs. In my case both of my sleep studies were both paid for my the province (now capped at one diagnostic study every year, and one therapeutic study every two years) but I had to pay 100% of the equipment costs out of pocket and did so willingly. I asked the cost for a sleep study had I needed to pay out of pocket and was told that each study is $508. Considering what I now know about OSA and its far reaching complications, yes I would have paid out of pocket for the sleep studies as well if needed.

I do certainly know that if I compare to how I feel overall now to just a few month ago I do know I never want to return to my pre-treatment days. I will know more the end of the month when we review my recent blood-work, but we expect to see improvements in my electrolyte levels and other such markers. If wearing a mask and being connected to a xPAP machine helps me live longer and with a better quality of life then I personally think that is well worth the minor inconvenience.

In the end we all have our own choice to make. I made mine and will hopefully live longer because of it, I hope whatever choice you make you can live with it.

[kteague]

My dr also reports that a significant percentage of the practice's OSA patients don't experience much increase in functioning; a situation that seems to be under-represented on this forum.

My question for that doctor would be - How do the stats look for those patients who:
1. Use their machines 100% of their sleep time
2. Have the effectiveness of their treatment verified periodically through a data capable machine
3. Do not report chronic mask issues
4. Have no other sleep disturbing issues (like limb movements, chronic pain, etc)
5. Are not on any meds known to adversely affect sleep
6. Are not on any meds known to make one feel tired and/or sleepy
7. Do not have other medical conditions contributing toward their symptoms
8. Get adequate hours of sleep regularly

Unfortunately, when the doctor makes a statement that includes all their OSA patients, those with issues in all the above areas are likely included in the significant percentage who don't experience much increase in functioning. I would really be interested in seeing the results of a doctor surveying all their OSA patients and further delineating markers for more predictable chance for recognizable improvement.

[JayC]

I *heart* you, jnk!

I especially love the last sentence.....as all those things are really so very important!

Warm regards,
J

I believe that, historically speaking, once it was discovered by some brilliant men and women just how far-reaching the OSA problem was and is, and how relatively easy it was to treat, a conscious decision was made by the research scientists to bring in the business people a bit early in order to create a form of testing and organizing treatment that would generate enough money to attract good doctors and equipment manufacturers. I don't think there was anything deceitful in the way that was done, or particularly greedy, but the process got rushed in order to save lives, and a backlash to that is natural.

Add to that, though, the common feeling among primary docs that treating complicated conditions can't possibly be as simple as pressurizing the airway (thus the need for educating docs) and then the common initial reaction among patients that PAP therapy sounds somehow unnatural and unattractive (thus the need for educating patients and the public), and you then have a real recipe for getting reactions like cyklopps' reaction among many thinking people, when it comes to OSA and PAP therapy.

My opinion is that this has been a good thread: Good honest questions. Direct honest answers in reaction. A great exchange of information--technical, emotional, and meaningful.

[SleepingUgly]

Adding quality of life into the equation, based on my personal experience, brings me to wonder what proportion of "non-compliant" people drop out of treatment because of comfort/psychological/mechanics issues

Clearly this accounts for much of noncompliance. And the ones who are least compliant are the ones who had no symptoms prior to starting CPAP. Symptoms are a powerful motivator.