Tried tonsillectomy, ready to try CPAP, need advice.

So a little background. In October I had a sleep study in which I was diagnosed with severe OSA as well as Central Sleep Apnea. My test revealed an AHI of 59.8. I am a 26 year old male, who is 170 lbs, and am in decent shape.

Since then I visited a ENT doctor and had my tonsils and adenoids removed, as well as fixed my deviated septum. My tonsils were massive and he expected this to help my overall lifestyle, as well as my OSA. These medical procedures seemed to help me dramatically. As of now I am not confident that my sleep is still to the level it could be. Since I could not fit in the time to be compliant for my Bi-Pap I was prescribed after recovering from surgery, before the new calendar year, I decided against getting one through an awful company like Respira.

Where I am now: I feel as though my quality of sleep, although has dramatically improved, is not where it could be. I am considering getting another sleep study done, but really want to avoid that experience altogether. I understand that my AHI has changed dramatically since I had those operations, and stopped smoking cigarettes. I am thinking about getting a Craigslist or Secondwind CPAP, specifically the "DS560 REMstar Auto AFLEX CPAP Machine with Heated Humidifier". I know that there are programs like Sleepyhead that would monitor my AHI and I was hoping to use that to track my progress and find out if CPAP would be best for me.

Financially it would cost me less to just buy a CPAP outright, but I am not confident that I would be able to "self diagnose" myself. On the other side I feel like my prescription for my bipap, with really high levels, wouldn't be best for me at this point either. Overall the entire process of dealing with insurance and the health care system has brought me to the point of avoiding any doctors altogether and take this into my own hands. Do you think jumping in and trying it would be best, or should I stop being arrogant and get another study done?

I think showing that you had CSA is telling that you should probably be re-evaluated. I think another sleep study may be important given all of the factors but I don't have much direction from you. This is a pretty unique situation.

Roxbear wrote: I am thinking about getting a Craigslist or Secondwind CPAP, specifically the "DS560 REMstar Auto AFLEX CPAP Machine

If you indeed have Central Sleep Apnea, this machine might be inappropriate treatment for you - some money poorly spent.

Roxbear wrote:Do you think jumping in and trying it would be best, or should I stop being arrogant and get another study done?

Well, you seem to have available a prescription for a BiPAP. One thought is to rent an Auto BiPAP for a few nights to gather some data on your current condition. You should first download SleepyHead and familiarize yourself with it and with how to post screenshots here.

After you have a look at a couple of nights, with interpretation help from the forum, you might have enough information to move on to the next decision. The data might show something easily treatable on your own or something difficult to treat for which you would want another sleep study and a doctor's help. Or, it might be inconclusive.

Don't run out and do anything right away. Wait for some others to chime in.

Roxbear, it would help a lot if you registered for an account, or at least included information what machine you use. Most bilevel machines produce data that is like having a sleep study every night. Chances are, the answers to your questions are sitting on a SD card in your current machine. Please reply with your machine make and model, and I'm sure we can help.

ChicagoGranny wrote:

Roxbear wrote: I am thinking about getting a Craigslist or Secondwind CPAP, specifically the "DS560 REMstar Auto AFLEX CPAP Machine

If you indeed have Central Sleep Apnea, this machine might be inappropriate treatment for you - some money poorly spent.

Roxbear wrote:Do you think jumping in and trying it would be best, or should I stop being arrogant and get another study done?

Well, you seem to have available a prescription for a BiPAP. One thought is to rent an Auto BiPAP for a few nights to gather some data on your current condition. You should first download SleepyHead and familiarize yourself with it and with how to post screenshots here.

After you have a look at a couple of nights, with interpretation help from the forum, you might have enough information to move on to the next decision. The data might show something easily treatable on your own or something difficult to treat for which you would want another sleep study and a doctor's help. Or, it might be inconclusive.

Don't run out and do anything right away. Wait for some others to chime in.

+1

I think CG has a great idea. Rent a machine and check the data....you may end up needing an AVS with the CAs
And like you said, you can do another study......your choice...good luck

SleepRider wrote: Roxbear, it would help a lot if you registered for an account, or at least included information what machine you use.

Took your advice and registered an account, but I do not have a machine currently. I have a prescription for a bi-level machine but I have never filled it yet, with recommended pressures of IPAP: 18 cm, EPAP: 14cm. I am considering filling it myself since like you said its like having a sleep study each night, I just do not feel like those levels are appropriate for myself any longer.

ChicagoGranny wrote: Well, you seem to have available a prescription for a BiPAP. One thought is to rent an Auto BiPAP for a few nights to gather some data on your current condition.

Thanks I think that is a really good idea, currently looking into places that I can rent a BiPAP machine.

I think renting a machine for a month may be a solid option and going from there, and is the option I'm most likely leaning towards. Thanks. I really just am trying to put thought and do something to move forward. It's so easy to just keep living the same way. Even though I'm tired throughout each day its just what I've deemed normal and its tough to get the motivation to want to change.

Thanks for the support all

How much specific info from your previous diagnostic sleep study can you post?

jnk... wrote:How much specific info from your previous diagnostic sleep study can you post?

lol That study was before

Since then I visited a ENT doctor and had my tonsils and adenoids removed, as well as fixed my deviated septum. My tonsils were massive and he expected this to help my overall lifestyle, as well as my OSA. These medical procedures seemed to help me dramatically.

His previous study is now worthless. Even the CSA diagnosis.

No. Not worthless. Often contains especially valuable information.

Titration info may be somewhat invalid. But a good diagnostic report is useful for a lifetime, despite profound changes in the airway and overall health.

I have. I do. And I will. Thanks.

Roxbear wrote: So a little background. In October I had a sleep study

October 2015 is pretty recent.

Roxbear wrote: in which I was diagnosed with severe OSA as well as Central Sleep Apnea.

What was the exact wording of the exact diagnosis, and were any comorbidities enumerated?

Roxbear wrote: My test revealed an AHI of 59.8.

How many events were labeled obstructive, how many were labeled central, how many were labeled apneas, how many were labeled hypopneas, and how many were considered mixed?

Roxbear wrote:I am a 26 year old male, who is 170 lbs, and am in decent shape.

What else can you say about your health, such as medications taken or health conditions that might explain central apneas?

Roxbear wrote:Since then I visited a ENT doctor and had my tonsils and adenoids removed, as well as fixed my deviated septum.

All septums are "deviated," since no one has a perfectly aligned septum. How severe was the deviation? Why were the tonsils and adenoids removed? For something more than an attempt at treating a sleep condition, I assume?

Roxbear wrote: My tonsils were massive and he expected this to help my overall lifestyle, as well as my OSA.

How massive? What about your lifestyle, besides sleep, was he hoping to treat? If he mentioned treatment of OSA, did his consultation and treatment plan include a follow-up sleep study to document efficacy? If not, why not?

Roxbear wrote: These medical procedures seemed to help me dramatically.

Please explain. What exactly was helped? Overall feelings of well-being? Or something measurable and specific?

Roxbear wrote: As of now I am not confident that my sleep is still to the level it could be.

Of course not. That is what sleep studies are for. Like the one the ENT should have scheduled if he claimed his work would help your sleep.

Roxbear wrote: Since I could not fit in the time to be compliant for my Bi-Pap I was prescribed after recovering from surgery,

I'm not sure what that means. You were prescribed bilevel as a way to recover from surgery only? What does "fit in the time" mean? You were otherwise occupied during sleep? I don't follow.

Roxbear wrote: before the new calendar year, I decided against getting one through an awful company like Respira.

Sounds like you may have made a financial judgment about the timing of getting a machine based on your form of insurance deductible. Yes? All companies are awful, one way or the other. Did they pay for the ENT work? Or did you get that done INSTEAD of a sleep-treatment machine?

Roxbear wrote:Where I am now: I feel as though my quality of sleep, although has dramatically improved, is not where it could be.

Quality of sleep cannot always be "felt" once one has been diagnosed with a sleep disorder that skews one's own perceptions of one's own sleep. Being asleep is not necessarily getting "quality" sleep. That can only be determined with medical testing or, in some cases, by response to therapy--specifically PAP therapy carried out on a machine that reports efficacy data, when it has been found during a diagnostic sleep study that breathing events are the primary issue destroying quality of sleep.

Roxbear wrote: I am considering getting another sleep study done, but really want to avoid that experience altogether.

Your medical team may well conclude that another sleep study is not needed, since you have already been diagnosed with a sleep disorder, although a sleep study that would document any change from the ENT work could be useful for finding out exactly where your sleep-breathing situation stands, if it has changed at all.

Roxbear wrote: I understand that my AHI has changed dramatically since I had those operations,

Wait! So you HAVE had a sleep study? Or you HAVE been using a machine that reports estimated AHI? What do you mean by dramatically? Do you now have an AHI below 5 without PAP? Because anything less effective than that is not "dramatic" in my book for someone with sleep-quality issues.

Roxbear wrote:and stopped smoking cigarettes.

Major congrats on that! One of the hardest things a human can do, IMO. If you can do that, the effort usually needed to make PAP work will be NOTHING in comparison to that.

Roxbear wrote: I am thinking about getting a Craigslist or Secondwind CPAP,

Perfectly reasonable option for many. Personally, I think the ENT should buy you the PAP machine. Just sayin'.

Roxbear wrote: I am not confident that I would be able to "self diagnose" myself. On the other side I feel like my prescription for my bipap, with really high levels, wouldn't be best for me at this point either. Overall the entire process of dealing with insurance and the health care system has brought me to the point of avoiding any doctors altogether and take this into my own hands. Do you think jumping in and trying it would be best, or should I stop being arrogant and get another study done?

You had a sleep study, and slicing septums, tonsils, adenoids, or whatever rarely changes much long term in the sleep-breathing game. Those procedures can all help PAP therapy be more successful, though. So there is that.

It isn't about arrogance. Sleep studies are mostly about getting insurance to pay. If you aren't going to use insurance, get your own PAP machine. If the Rx needs to be changed, make the blasted ENT's office get that for you for free from the ENT.

The larger issue is what kind of machine you need. And that info should be in the specifics recorded in previous sleep studies that I understand you already had before the slicing and dicing. And that info is still valid, regardless of what the Cereal Killer seems to believe. A bilevel, that you already seem to have an Rx for, can also be run as a simple CPAP. So if you don't need a machine specifically designed to treat central apneas, that would be a place to start.

If you need a machine for treating central apnea, you may need a doc for that--especially if you are 26 and are considered in "good health." Some drug or medical condition is likely causing that if you actually have central sleep apnea. Those issues are generally not self-treatable the way simple OSA often is. So how many centrals did you have? What did the doc say caused them? And would you still have them on PAP therapy? Those are the deeper questions at hand, I believe.

In my opinion. And I ain't no pro. Just some very opinionated fellow patient on the internet.

jnk... wrote: What was the exact wording of the exact diagnosis, and were any comorbidities enumerated?

During the diagnostic portion of the study 96 disturbances recorded 93 apneas (11 obstructive, 23 mixed, 59 central) the AHI was 71.1 events an hour and the central sleep apnea index was 43.7 events/hour.

jnk... wrote:What else can you say about your health, such as medications taken or health conditions that might explain central apneas?

I take no medications, I drink on the weekends, and drink coffee most work days. I have no other known health conditions. I have slightly high cholesterol, but other than that all wellness screenings come out fine.

jnk... wrote: Why were the tonsils and adenoids removed? For something more than an attempt at treating a sleep condition, I assume?

The tonsils and adenoids were removed primarily to treat a sleep condition as per the ENT's recommendation. However, even just running I would get winded and struggle to breathe in enough oxygen and have noticed an improvement. Now that I am taking a more thorough look at my results and seeing how many central apnea events I experienced, I'm not sure this was the best route.

jnk... wrote: How massive? What about your lifestyle, besides sleep, was he hoping to treat? If he mentioned treatment of OSA, did his consultation and treatment plan include a follow-up sleep study to document efficacy? If not, why not? Please explain. What exactly was helped? Overall feelings of well-being? Or something measurable and specific?

Nearly touching was how the ENT described it. Although I followed up with him through my recovery from surgery, it was not a part of the plan to have a follow-up sleep study. There were no other lifestyle issues that we were targeting, other than helping my respiratory system in general. I could have had a follow up study on my own accord but that was not part of my arrangement with my ENT doctor.

What I was describing previously is just how I feel. After recovering from those surgeries I felt my sleep was drastically improved. I felt more well rested, and energetic throughout the day. No I do not have anything measurable. My ENT, given my age and size, was confident that undergoing surgery would drastically improve my sleep situation, so whether it was a placebo affect or not, I really felt like it was successful for some time after I recovered.

jnk... wrote:I'm not sure what that means. You were prescribed bilevel as a way to recover from surgery only? What does "fit in the time" mean? You were otherwise occupied during sleep? I don't follow.

Again sorry for the lack of clarity. I was prescribed a BiPAP around the end of October, at which point my deductible was met. My original plan for tackling my sleep apnea was to have my surgery through my ENT, as well as obtain a Bi-PAP machine. My insurance only accepts Apria, which I met with and as they explained their payment plan I realized I would have to rent the machine for a 6-month period, have a few follow-up appointments with specialists as well as show compliance, and then still have to purchase the machine. Unfortunately I have a very high deductible plan and my insurance would not cover anything until I met that deductible. I fought with my insurance company and Apria to try to purchase a machine outright but that would not satisfy my insurance companies terms, so I rather just planned to continue on with my surgery in hopes that would alleviate my condition. It was not until I have been experiencing the same symptoms that I have started looking into purchasing a C-PAP / Bi-PAP on my own terms, since all the red tape and hoops I had to jump through caused me to give up on it last time.

Yes the insurance company paid for the ENT work since my deductible had been met from going through with an in-home sleep study, and then an in-lab study as well as previous unrelated appointments.


Jumping through the last few questions, I have NOT had another sleep study since my operations. I can provide more information about my sleep study performed in October if needed. I have been weighing my financial situation into my health decisions heavily. I have been judging a lot of my results on how I feel as well.

A summary of my view of my situation: so far in 2016 I have fulfilled 0$ of my deductible. A sleep study will cost me about $1,000, although my employer offers some medical reimbursement, a large amount of that would be out of pocket.

I have been feeling very lethargic, and although my girlfriend no longer witnesses me gasping for air in my sleep, I still question how effective my sleep is. I am considering purchasing a CPAP/Bi-PAP machine not only because I believe that it could help me long-term, but I can use it as a diagnostic tool. In addition to getting a wellness examination and some bloodwork done in the near future, if I spent $350-500 on a C-PAP/Bi-PAP at second wind I would be able to get information to evaluate myself/with cpaptalkers through sleepyhead and take control of my own health. So rather than pay $1,000 for another sleep study and a doctor trying to push me to Apria, I could just purchase my own and keep trying at it. Worst case scenario I purchase a machine that is mine, and potentially am able to resell/donate.

jnk... wrote: The larger issue is what kind of machine you need. And that info should be in the specifics recorded in the diagnostic sleep study that you already had before the slicing and dicing. And that info is still valid, regardless of what the Cereal Killer seems to believe.

In my opinion. And I ain't no pro. Just some very opinionated fellow patient on the internet.

This is the part that I'm having the most trouble with, I was prescribed a Bi-PAP machine with no auto setting. I was thinking of trying to get a C-PAP because I remember I was administered a Bi-PAP when I was rejecting the C-PAP and largely breathing out of my mouth and having trouble exhaling, and frankly its a lot cheaper to get a high quality model. Since my surgery I no longer wake up in the morning with a ridiculously dry mouth and am actually able to breathe through my nose regularly (something I didn't deem possible). Its been tough for me to differentiate the difference between the two machines, other than lowering the pressure to allow for exhaling, and that Bi-PAP is administered when C-PAP fails.

I honestly am blown away by the depth of your response and am so thankful for the concern and information you have already provided. I feel like this level of questioning and information has not been provided to me at all throughout my experience in the medical industry. My sleep study was evaluated by a sleep specialist and when I attempted to meet with him his secretary said "he does not like to meet with people, he just evaluates the results". I had to call 3x to get a copy of the sleep study and interpretation sent to me, they faxed it to Apria and wanted me to just go to the DME without having the results explained to me.

Roxbear wrote:I honestly am blown away by the depth of your response and am so thankful for the concern and information you have already provided.

I had much the same response to the people that helped me. There were so many trying to help me, that I joined to let two special ladies guide me with PMs. That may not be the best way to do it, but it became less confusing for me as I was in something of a daze before starting CPAP.

Nearly touching was how the ENT described it.

I think after you start using CPAP, you will have a greater appreciation for the surgery that removed tonsils, adenoids and straightened the septum.

Good luck.

That helps. Thanks.

Personally, if I had that many central apneas, and they didn't resolve during titration, I would want a sleep doc who knew my body, my history, and my family history to stay in the loop. Yes, there is a possibility that untreated OSA alone caused the centrals. But the kind of numbers you are giving aren't standard OSA numbers, in my non-professional opinion.

It would be easy enough for any of us to say, 'hey, try getting your own machine then see what happens.' But as the other posters have already said, that can be money down the drain if your issue isn't plain old vanilla obstructive sleep apnea. A sleep doc would need to document your reactions to other forms of therapy on the way to, possibly, ASV being paid for by insurance. Or possibly on the way to diagnosing some other as-yet-unknown condition that is causing the centrals as a symptom.

I get not wanting to deal with doctors. And I get how insurance can be a royal pain in the wallet. And I get your getting the ENT work done if your waking airway was that bad. Also, I think PAP is likely to help you and will be easier now that the ENT work is done. HOWEVER, I would not be comfortable suggesting going it alone if you have documentation of that number of centrals. Painful as it is, I would still want docs and tests involved, if for no other reason than to hedge against the need for my wallet to take an even bigger hit in the future and the possibility of my health needing further investigation that would be informed by the documentation produced by a medical team I was cooperating with.

It isn't supposed to be this hard. I admire your finding a way through it. I think, though, that working within the overall system, as flawed as it is, may, in your case, be the best way to go.

Just one man's opinion. There are others here who are much more experienced and knowledgeable than I am, though. Some of them are PMers.

I like the proposal to rent an Auto BiPAP for a limited time. My DME loaned me a machine for a week without even charging me. Now, that is a local one-store company. You may not be so lucky with other DMEs.

You might also want to look at this thread - viewtopic.php?f=1&t=111686&view=unread#unread.