To CPAP or not to CPAP? That is the Question...

[DZALE22]

Hello all,

I was diagnosed with sleep apnea just a couple years back at the age of 25 and apparently had a severe case (40 irregularities an hour). I never felt awake, always tired then I learned that what I thought to be just a plain old case of severe snoring was really a devastating sleep disorder. According to the doctor, it could have caused so much strain on my heart that if left untreated I could have potentially had a serious stroke by the age of 35. Still not 100% sure if the doc was blowing smoke up my ass or what, but he was a pulmonary doc and scared the living shit out of me eventually turning me on to the ole CPAP...and, even after doing extensive research and exposing myself to about a dozen or so of those mind blowing 'the CPAP changed my life' stories, I was convinced I needed one. Perhaps this machine would take care of the new found fear that I had mistook as simple exhaustion my whole life prior to my learned discovery from the chance study I luckily happened upon (suggested by my wife to ask doc about snoring, leading to being referred by my primary physician to the schedule a study at the sleep lab). SOOOooo, I purchased a CPAP out of pocket... The Resmed S9 Autoset.. Long story short is I tried to get used to this thing, I have a nasal and a full face mask. Both, in my view, are shear torture. I barely put any hours on this machine and I truly tried! After putting out the dough that this glorified air compressor cost!?? Heck yeah I gave it a shot. But the idea of the whole thing...that this WAS simply the treatment...The LIFEtime method of treatment...!? You kidding me...? A mask on my face every night for the rest of my life...give me the stoke at 35 if thats my only option--jk, shouldn't even joke about that...but...long story short, I ended up doing the surgical procedure by an ears, nose and throat doctor---3 separate procedures, actually--septoplasty, adenoids removed, and uvula removed (the most agonizing recovery--excruciating pain lasting 10 days)---and of course after enduring the surgery, my pulmonary doc wanted absolutely nothing to do with me anymore. I went with the permanent solution and let me tell you, I do NOT snore anymore---this coming from a guy who once woke himself up regularly because of the high decibel level output my snore was responsible for. I'm pretty sure my snore could have been detected and evaluated on the Richter scale, measuring probably pretty near or just slightly under what a typical West coast aftershocks would register at...no, but seriously, this freight train is no more---now electromagnetic--the air coasts smoothly between the rail and the car...no more blockage. I feel more awake...I accomplish more...I am a better parent. I mean surgery might not be the best option for all, but, for me, in this case, it really seemed to work out. If anyone has any advice or wisdom they could possibly share about what the future might hold for this freshly diagnosed sleep apnea patient, I would appreciate it. I feel I am being a bit naive about the situation believing I jumped down from a severe case to nothing: a total cure...is it possible? If this is the case-- Here I sit with a $1000 machine which I really never use or never really used even prior to the surgery, so why let it sit around and not be of use to somebody who actually needs it and could use it...?? Maybe somebody who is getting the shaft from their insurance co. and cannot afford one out of pocket I could help out? Or should I hang onto it? To CPAP or not to CPAP, that is the question?

[49er]

Dzale22,

As one who is going to have a septoplasty/turbinate reduction to improve my ability to tolerate the cpap machine (not cure my apnea), I understand the points you have made. However, many people who have had the surgeries you have had end up having a return of their apnea. Before you get rid of the cpap machine, you might want to have a sleep study just to make sure.

Sorry, I don't mean to be the bearer of bad news. But I do want to be honest about the situation.

49er

Hello all,

I was diagnosed with sleep apnea just a couple years back at the age of 25 and apparently had a severe case (40 irregularities an hour). I never felt awake, always tired then I learned that what I thought to be just a plain old case of severe snoring was really a devastating sleep disorder. According to the doctor, it could have caused so much strain on my heart that if left untreated I could have potentially had a serious stroke by the age of 35. Still not 100% sure if the doc was blowing smoke up my ass or what, but he was a pulmonary doc and scared the living shit out of me eventually turning me on to the ole CPAP...and, even after doing extensive research and exposing myself to about a dozen or so of those mind blowing 'the CPAP changed my life' stories, I was convinced I needed one. Perhaps this machine would take care of the new found fear that I had mistook as simple exhaustion my whole life prior to my learned discovery from the chance study I luckily happened upon (suggested by my wife to ask doc about snoring, leading to being referred by my primary physician to the schedule a study at the sleep lab). SOOOooo, I purchased a CPAP out of pocket... The Resmed S9 Autoset.. Long story short is I tried to get used to this thing, I have a nasal and a full face mask. Both, in my view, are shear torture. I barely put any hours on this machine and I truly tried! After putting out the dough that this glorified air compressor cost!?? Heck yeah I gave it a shot. But the idea of the whole thing...that this WAS simply the treatment...The LIFEtime method of treatment...!? You kidding me...? A mask on my face every night for the rest of my life...give me the stoke at 35 if thats my only option--jk, shouldn't even joke about that...but...long story short, I ended up doing the surgical procedure by an ears, nose and throat doctor---3 separate procedures, actually--septoplasty, adenoids removed, and uvula removed (the most agonizing recovery--excruciating pain lasting 10 days)---and of course after enduring the surgery, my pulmonary doc wanted absolutely nothing to do with me anymore. I went with the permanent solution and let me tell you, I do NOT snore anymore---this coming from a guy who once woke himself up regularly because of the high decibel level output my snore was responsible for. I'm pretty sure my snore could have been detected and evaluated on the Richter scale, measuring probably pretty near or just slightly under what a typical West coast aftershocks would register at...no, but seriously, this freight train is no more---now electromagnetic--the air coasts smoothly between the rail and the car...no more blockage. I feel more awake...I accomplish more...I am a better parent. I mean surgery might not be the best option for all, but, for me, in this case, it really seemed to work out. If anyone has any advice or wisdom they could possibly share about what the future might hold for this freshly diagnosed sleep apnea patient, I would appreciate it. I feel I am being a bit naive about the situation believing I jumped down from a severe case to nothing: a total cure...is it possible? If this is the case-- Here I sit with a $1000 machine which I really never use or never really used even prior to the surgery, so why let it sit around and not be of use to somebody who actually needs it and could use it...?? Maybe somebody who is getting the shaft from their insurance co. and cannot afford one out of pocket I could help out? Or should I hang onto it? To CPAP or not to CPAP, that is the question?

[Bill44133]

+1 for the 49er.. Let us know how you do though. I hope it does "cure" you. I wish you well..

Dzale22,

As one who is going to have a septoplasty/turbinate reduction to improve my ability to tolerate the cpap machine (not cure my apnea), I understand the points you have made. However, many people who have had the surgeries you have had end up having a return of their apnea. Before you get rid of the cpap machine, you might want to have a sleep study just to make sure.

Sorry, I don't mean to be the bearer of bad news. But I do want to be honest about the situation.

49er

Hello all,

I was diagnosed with sleep apnea just a couple years back at the age of 25 and apparently had a severe case (40 irregularities an hour). I never felt awake, always tired then I learned that what I thought to be just a plain old case of severe snoring was really a devastating sleep disorder. According to the doctor, it could have caused so much strain on my heart that if left untreated I could have potentially had a serious stroke by the age of 35. Still not 100% sure if the doc was blowing smoke up my ass or what, but he was a pulmonary doc and scared the living shit out of me eventually turning me on to the ole CPAP...and, even after doing extensive research and exposing myself to about a dozen or so of those mind blowing 'the CPAP changed my life' stories, I was convinced I needed one. Perhaps this machine would take care of the new found fear that I had mistook as simple exhaustion my whole life prior to my learned discovery from the chance study I luckily happened upon (suggested by my wife to ask doc about snoring, leading to being referred by my primary physician to the schedule a study at the sleep lab). SOOOooo, I purchased a CPAP out of pocket... The Resmed S9 Autoset.. Long story short is I tried to get used to this thing, I have a nasal and a full face mask. Both, in my view, are shear torture. I barely put any hours on this machine and I truly tried! After putting out the dough that this glorified air compressor cost!?? Heck yeah I gave it a shot. But the idea of the whole thing...that this WAS simply the treatment...The LIFEtime method of treatment...!? You kidding me...? A mask on my face every night for the rest of my life...give me the stoke at 35 if thats my only option--jk, shouldn't even joke about that...but...long story short, I ended up doing the surgical procedure by an ears, nose and throat doctor---3 separate procedures, actually--septoplasty, adenoids removed, and uvula removed (the most agonizing recovery--excruciating pain lasting 10 days)---and of course after enduring the surgery, my pulmonary doc wanted absolutely nothing to do with me anymore. I went with the permanent solution and let me tell you, I do NOT snore anymore---this coming from a guy who once woke himself up regularly because of the high decibel level output my snore was responsible for. I'm pretty sure my snore could have been detected and evaluated on the Richter scale, measuring probably pretty near or just slightly under what a typical West coast aftershocks would register at...no, but seriously, this freight train is no more---now electromagnetic--the air coasts smoothly between the rail and the car...no more blockage. I feel more awake...I accomplish more...I am a better parent. I mean surgery might not be the best option for all, but, for me, in this case, it really seemed to work out. If anyone has any advice or wisdom they could possibly share about what the future might hold for this freshly diagnosed sleep apnea patient, I would appreciate it. I feel I am being a bit naive about the situation believing I jumped down from a severe case to nothing: a total cure...is it possible? If this is the case-- Here I sit with a $1000 machine which I really never use or never really used even prior to the surgery, so why let it sit around and not be of use to somebody who actually needs it and could use it...?? Maybe somebody who is getting the shaft from their insurance co. and cannot afford one out of pocket I could help out? Or should I hang onto it? To CPAP or not to CPAP, that is the question?

[herefishy]

Sounds like you wouldn't use the machine even if a sleep study said you still have apnea, so you might as well donate it to someone and enjoy your life.

[Uncle Flapp]

However, many people who have had the surgeries you have had end up having a return of their apnea.

I'm one of them. About a year after the surgery, my apnea returned. Seven years later, my untreated score is 84. The surgery works for some. For me, not so much. Your mileage may vary. I hope it works out.

- Flappy

[Janknitz]

I think you know the answer when you say "I suspect I'm being naive expecting a total cure". The only way to know for sure is to have another sleep test and find out. No sense in being a better parent if you don't live long enough or stay well enough not to see them grow up.

If any if those doctors who put you through immense pain and took lots of your money promised a "cure" they were lying. All they could guarantee is an improvement in 50% of the people they alter. But that doesn't mean you didn't hear them to promise a cure because that's what you were looking for. So now is the time to find out. Trust your instinct, there must be a reason you're starting to doubt ...

[Julie]

The UPPP is the problem- unfortunately it often (most of the time?) reverts to your needing Cpap within a year. But don't think about doing it your whole life - technology's changing daily now and it's very possible you'll be doing something a whole lot easier and less Vader-ish within even 5-10 yrs.

[kaiasgram]

Would it give you peace of mind to have a sleep study now to see where things are at? If your apnea is effectively gone at this point, then you could rest easy for now but have a plan to keep monitoring how you're doing. One way to do this would be to buy a recording pulse oximeter and use it periodically to make sure your O2 is staying at an acceptable level while you sleep. They run around $150 and come with software to see your overnight results, and they're easy to use -- basically you wear it on your finger for the night.

In your position I'm not sure if I would sell or donate the cpap machine since as others have said, the results of your surgeries may not be long-lasting. Also, the resale value of the machine may not be worth it. Like new cars, new PAP machines depreciate significantly when you drive them off the lot -- if you only get a year of pap-free sleeping, it might be worth keeping your S9 Autoset. On the other hand, if you were to get a couple of good years before your apnea is back you might be looking at newer machines at that point anyway -- they're constantly improving the technology.

I hope all goes well for you, whatever you decide to do.

[49er]

Thanks Bill44133, you are very kind. Even if I was one of the 10% cure statistics, I would still hang on to my machine to be on the safe side.

Dzale22, I only quickly glanced at your post in another thread so if I am misstating someone, please forgive me. You seem to be unsure as to what to do regarding your cpap. Even if you decide to undergo a sleep study and come out apnea free, I would still keep your machine in case the apnea comes back. That way, you are covering all bases. But that is just my opinion.

49er

+1 for the 49er.. Let us know how you do though. I hope it does "cure" you. I wish you well..

Dzale22,

As one who is going to have a septoplasty/turbinate reduction to improve my ability to tolerate the cpap machine (not cure my apnea), I understand the points you have made. However, many people who have had the surgeries you have had end up having a return of their apnea. Before you get rid of the cpap machine, you might want to have a sleep study just to make sure.

Sorry, I don't mean to be the bearer of bad news. But I do want to be honest about the situation.

49er

Hello all,

I was diagnosed with sleep apnea just a couple years back at the age of 25 and apparently had a severe case (40 irregularities an hour). I never felt awake, always tired then I learned that what I thought to be just a plain old case of severe snoring was really a devastating sleep disorder. According to the doctor, it could have caused so much strain on my heart that if left untreated I could have potentially had a serious stroke by the age of 35. Still not 100% sure if the doc was blowing smoke up my ass or what, but he was a pulmonary doc and scared the living shit out of me eventually turning me on to the ole CPAP...and, even after doing extensive research and exposing myself to about a dozen or so of those mind blowing 'the CPAP changed my life' stories, I was convinced I needed one. Perhaps this machine would take care of the new found fear that I had mistook as simple exhaustion my whole life prior to my learned discovery from the chance study I luckily happened upon (suggested by my wife to ask doc about snoring, leading to being referred by my primary physician to the schedule a study at the sleep lab). SOOOooo, I purchased a CPAP out of pocket... The Resmed S9 Autoset.. Long story short is I tried to get used to this thing, I have a nasal and a full face mask. Both, in my view, are shear torture. I barely put any hours on this machine and I truly tried! After putting out the dough that this glorified air compressor cost!?? Heck yeah I gave it a shot. But the idea of the whole thing...that this WAS simply the treatment...The LIFEtime method of treatment...!? You kidding me...? A mask on my face every night for the rest of my life...give me the stoke at 35 if thats my only option--jk, shouldn't even joke about that...but...long story short, I ended up doing the surgical procedure by an ears, nose and throat doctor---3 separate procedures, actually--septoplasty, adenoids removed, and uvula removed (the most agonizing recovery--excruciating pain lasting 10 days)---and of course after enduring the surgery, my pulmonary doc wanted absolutely nothing to do with me anymore. I went with the permanent solution and let me tell you, I do NOT snore anymore---this coming from a guy who once woke himself up regularly because of the high decibel level output my snore was responsible for. I'm pretty sure my snore could have been detected and evaluated on the Richter scale, measuring probably pretty near or just slightly under what a typical West coast aftershocks would register at...no, but seriously, this freight train is no more---now electromagnetic--the air coasts smoothly between the rail and the car...no more blockage. I feel more awake...I accomplish more...I am a better parent. I mean surgery might not be the best option for all, but, for me, in this case, it really seemed to work out. If anyone has any advice or wisdom they could possibly share about what the future might hold for this freshly diagnosed sleep apnea patient, I would appreciate it. I feel I am being a bit naive about the situation believing I jumped down from a severe case to nothing: a total cure...is it possible? If this is the case-- Here I sit with a $1000 machine which I really never use or never really used even prior to the surgery, so why let it sit around and not be of use to somebody who actually needs it and could use it...?? Maybe somebody who is getting the shaft from their insurance co. and cannot afford one out of pocket I could help out? Or should I hang onto it? To CPAP or not to CPAP, that is the question?

[jnk]

You may already understand this very well, but just to make sure other readers do . . .

". . . and let me tell you, I do NOT snore anymore . . . "

. . . does not necessarily mean the same thing as . . .

". . . no more blockage."

Surgery can at times "cure" the snoring but still leave a person with just as many, if not more, apneas. Surgery can only address one location, the location of the surgery, whereas apneas, the blockages, can occur other places in the airway, and often do once another area is "fixed." Some unfortunate people have even found that UPPP worsened their apnea condition in the long run in that it, in an overly-simplified sense, provided a larger hole for the tongue to fall back into, which can then require significant pressures and positional interventions to prevent that from happening.

Also please note that if you again use your AutoSet you may now need to use it in straight CPAP mode rather than in Auto mode. Having UPPP can change the nature of the snores and the flow curves, and that, in turn, can make it difficult for an APAP to find the correct pressure, since it does not have the usual sorts of precursors of blockage to use in its pressure decisions. UPPP is considered by many to be a contraindication for APAP for that very reason. Auto mode still works for some, but it is less likely to work, statistically speaking, as I understand it.

So I agree with the others who have said you may want to keep your machine for use later, depending on what your next sleep study says. The fine people on this board will be more than happy to help you find a way to make using CPAP work for you. There are a few tricks to try and adjustments to make on the way to becoming a successful Papper. Many here had difficulties themselves before stumbling onto what made CPAP finally work for them.

I hope you find what has been said in this thread helpful to you. And be assured everyone here is hoping the best for you.

No strokes for no folks.

-Jeff

[krb39]

I will start with comments in Q and A form:

Q: Is the doctor blowing smoke up your ass?
A: Probably not, but "to err is human" so you have to judge this for yourself.

Q: Can you get used to the machine?
A: Probably. When I first started, it seemed like the machine and I had competing ideas. It would be trying to force air in when I was trying to exhale. We eventually got on the same page. It gets easier by a lot.


Q: Do you have the right machine?
A: Ah, there's a rub. I started with a CPAP and moved on to a BPAP. I still get more large leakage than I would like, but my average AHI is something like 1.2 and I sleep fine.

Q: If you need it should you suck it up and do it?
A: Definitely, very definitely.


My apnea also was discovered, a year plus ago, as a side result. I had had a mini-stroke and while searching for causes, it was found that I have both obstructive and central apnea with an AHI in the 50s. I would like to live for a while longer and I would like to be conscious of my surroundings while doing it. So I wear the mask. Yes, I am older, 75 to be exact, and no doubt I have become more accustomed to the humiliations of my body sometimes being less than I might hope for. But if you need it, just do it. You mention kids. Reason enough, right? Your wife would probably appreciate your continued presence as well. And then, of course, there is you.

That path is for your steps alone
Good luck.

[billyc17]

getting scheduled for septoplasty/turbinate reduction-outfracture and nasal valve repair. had detailed inspection by my ent yesterday- my nostrils completely collapse inward with each inhalation. what i have assumed to have been constant congestion has been the valve collapse limiting/restricting air in-take (sounding like congestion) resulting in horrible sleep/frequent awakenings that even cpap wouldn't help. have been using nasal strips which have helped on a limited basis the last week or so. doc will "firm" up nostrils/valve with nose cartilage to prevent collapse on inhale and reduce turbinates as they are pretty thick as well. he inserted a nose device that would simulate "repositioning" and breathing was free and clear. i will absolutely have "real" sleep study done after recovery, he wants one done as well, and if any degree of osa is evidant i will certainly use cpap----bi-pap or whatever is warranted as this 22 month nightmare of horrible sleep/deprivation/chronic fatigue/exhaustion has to come to an end so i can get back to life and back to nourishing sleep.