I don't feel I need cpap therapy-anyone else feel this way?

okieyankie · Post by **okieyankie** » Thu May 08, 2008 3:57 pm

I was prescribed cpap therapy by a pulmonologist who was me for 5 minutes in the hospital, post surgery due to a small pulmonary embolism. He prescribed oxygen (2 liters) for sleeping at night which I have used religiously since 2/6/08. He also prescribed a sleep study, which I did, and then his office called to tell me I have mild sleep apnea (doesn't everyone?) and they wante me to come in for another study, this time with oxygen which they didn't use the first time at the doctor's request, and with a cpap. I declined the 2nd sleep study as I was due to return to work the next day after a 2 1/2 month leave of absence after surgery. So they called me and told me the doctor had prescribed a cpap machine and wanted to schedule an appointment for someone to come and fit it. This was all prescribed and submitted to my insurance and my insurance purchased the cpap rather than rented it so now I'm stuck with a machine that I don't feel I need, am not adapting to it at all (probably due to the fact that I don't believe I need it), and I have yet to have this pulmonologist ask to schedule an appointment in his office. I was told by the woman who came to fit the mask that the pressure was set at the minimum and was the lowest setting she has ever seen on a cpap machine. An acquaintance told my husband if the setting was less than 7 they probably just took my money - it's at 4.0. Does anyone else feel they have been taken to the cleaners by being prescribed a cpap that they don't believe they need?

Sharon P.

Guest · Post by **Guest** » Thu May 08, 2008 5:22 pm

Sharon,

You've obviously gotten some mixed service. I'd call your insurance provider, and ask them to recommend a pulmonologist with a background in sleep disorders who they will pay for, and then go see that person, instead of the person you're unhappy with.

Then call and make your own appointment for an evaluation of your sleep results, and whether the equipment you have is adequate, set correctly, or even necessary.

No one thinks they need this therapy. No one WANTS this therapy. No one can FORCE YOU to use this therapy.

But if you're afraid of dying in your sleep, if you would rather not saddle your husband or children with a brain injured patient to care for for the rest of their lives, perhaps you need to pursue it.

I've gotten the best advice and "service" from this forum, and from the folks at https://www.cpap.com. Not the MD's. In fact, I refused to see the ENT I was sent to last year. I'm finally going to go see him in two weeks, and my asthma doc rolled her eyes and wondered why. I just want to make sure all my t's are crossed. I'm betting it's a waste of time and money, but what the hey. It's been a year, might as well go see him.

Getting adequate time and attention from MD's IS difficult. Demanding they spend some time with you and answer your questions is NOT "being difficult." They owe you an explanation.

And whoever set your machine at 4 is a moron. Try re-setting it to 7 or higher and see if you do any better.

Good luck!
Babs

PS - We've got a few Okies on this board. I'm sure they can give you some tips on finding a decent doc in your area.

sharon1965 · Post by **sharon1965** » Thu May 08, 2008 5:46 pm

okieyankie wrote: Does anyone else feel they have been taken to the cleaners by being prescribed a cpap that they don't believe they need?
Sharon P.

LOL, no offence, but this last line kinda cracked me up...i'm sure there are a few people around who feel this way, but for the most part, on a cpap forum, where people are trying everything they can to make their therapy work, you're probably not going to find too many of them

now if you dropped in to, say, a wood working forum and asked that question, you might get somewhere,

_________________

CPAPopedia Keywords Contained In This Post (Click For Definition): CPAP

jules · Post by **jules** » Thu May 08, 2008 5:51 pm

Okieyankie Sharon,

You need to go back and get the second sleep study done. It is just a night in a sleep lab and they throw you out early enough to find your way to work if they can't do it on a weekend. Until you know what pressure you need, using a cpap isn't going to be that much help.

Jere · Post by **Jere** » Thu May 08, 2008 8:14 pm

I had a similar experience several years ago at John Hopkins in B'more. The doctor was arrogant and dismissive and the staff was cold and indifferent. Needless to say, the sleep study was a disaster and did not sleep at all. The then strong-armed me to stay the following day (figuring I would eventually collapse and sleep). However, I was so wound up over the entire experience that I did not sleep a wink. Finally I was allowed to go home after being hooked up to all those wires for almost 24 hours. Two weeks later my doctor gets a report from John Hopkins saying that I had apnea - this is after I never slept while in their care. I took the scrip from my doctor but never got it filled since I knew (still know) that the sleep lab had no data to back up their diagnosis.

It was not until 5 years later that I went to another sleep lap, where the doctors are human and the staff is warm (and I was allowed to take my sleep meds), that I actually slept for several hours. Ironically, I was diagnosed with apnea the second time.

It is amazing the difference the right sleep lab can do. I would get away from your first doctor and do the sleep study somewhere that the doctors and staff are capable of treating patients as people.

okieyankie · Post by **okieyankie** » Fri May 09, 2008 8:34 am

Thanks to you guys who answered. I realize I'm probably in the wrong place to find support for my beliefs and I do appreciate your replies and advice.

I have tried looking everywhere for guidelines for why and at what point sleep (or lack thereof) readings justify prescribing cpap therapy, but have had no luck. During my sleep study (I'm actually amazed that I was able to sleep at all, much less the 7 hours that I did get) when I was sleeping on my back, that's when the episodes mostly kicked in and the summary indicated I averaged 18 episodes per hour when on my back, less when on my side. Prior to my knee replacement surgery, I always slept on my stomach and my husband said I did not snore or gasp for breath and he almost always goes to bed after I am already asleep.

I have friends and acquaintances who have been on cpap therapy for years and swear by it because their episodes are so severe they stop breathing for long periods of time without it and I know they are getting life-saving results by using cpap. I, however do not feel that my level of sleep apnea (mild) does not justify it, especially when I am only getting 2-3 hours of sleep a night and have a full-time job I have to go to during the day and need to be able to function a little bit better than the zombie I've become for the past several weeks. For that reason, I have resorted to only using the cpap machine on Friday and Saturday nights when I can sleep during the day to catch up on what I didn't get the night before. I'm sure I'm defeating the purpose, because I'm not using it during the day when I AM trying to catch up, but I keep telling myself that I will eventually get used to it if I keep using it on weekends. I think I'm kidding myself, but don't know what else to do. I HAVE to work and in order to keep my job I MUST be able to function for 7.5 hours a day and 2-3 hours of sleep a night just doesn't cut it.

I am going to take your advice and try to get another opinion and maybe I will got for another study if the new physician says I need to after reading my current evaluation. I guess I just don't have faith in sleep specialists because that seems to be the "new" thing to do these days - go have a sleep study. I'll wager that 99% of people who go for sleep studies are told they have at least SOME level of sleep apnea and need further treatment and/or another study. At $2800 a pop (I'm told it's 50% more for a second study), SOMEONE seems to have found a way to print money and I'm betting most physicians who specialize or dabble in sleep studies have a vested interest in the sleep centers who perform these studies.

Thanks again for your attention and advice.

Sharon P.

RonS · Post by **RonS** » Fri May 09, 2008 8:49 am

I wouldn't be using a machine at 4.0, for me I feel as if I can't get enough air.

I would think that you need to be titrated.

What kind (make, model) of machine do you have? Some machines can produce data that can be helpful to see what is going on with your breathing.

okieyankie · Post by **okieyankie** » Fri May 09, 2008 9:07 am

My machine is a REMstar Auto M Series C-Flex. The 4.0 setting makes the point that I really don't think I need this machine because I feel like I'm getting more than enough air at this setting. The 4.0 setting was what was prescribed by my doctor....hence part of my lack of confidence in his diagnosis. I have tried to contact him but have yet to have him return my calls. He has his PA or nurse or someone call to ask me if they can help and I ask if they can tell me if my settings on the cpap machine are correct and they keep trying to schedule another sleep study or that I will have to talk to the doc....DUH!!! He evidently does not talk on the phone. I'm sure I will eventually need to go for another study/titration, etc., if this is indeed a legitimate diagnosis, but in the meantime I will continue to only use it the 2 weekend nights I guess.

Thanks for your reply.

sharon1965 · Post by **sharon1965** » Fri May 09, 2008 9:15 am

okieyankie wrote: I guess I just don't have faith in sleep specialists because that seems to be the "new" thing to do these days - go have a sleep study. I'll wager that 99% of people who go for sleep studies are told they have at least SOME level of sleep apnea and need further treatment and/or another study. At $2800 a pop (I'm told it's 50% more for a second study), SOMEONE seems to have found a way to print money and I'm betting most physicians who specialize or dabble in sleep studies have a vested interest in the sleep centers who perform these studies.

Thanks again for your attention and advice.

Sharon P.

sharon
i can see your point about this, and i don't know what it's like in the states, but where i live, in an underserviced area where specialists won't see you unless your head is hanging off, no one gets to see a sleep specialist without first being screened to ensure there is even a need for an initial consult. i suppose because of our health care system, they won't waste a dime on someone who doesn't first fit the profile of a person with a sleep disorder...that's been my experience around here, anyway

as far as it being the "new thing", i think that's mainly because of increased awareness of OSA; i wish more GP's would suggest sleep studies instead of prescribing unnecessary meds or telling patients their symptoms are all in their heads, it would have saved me years of grief and possibly irreversible damage to my body

good luck pursuing this...i hope it works out for you and you get some much needed rest!

okieyankie · Post by **okieyankie** » Fri May 09, 2008 9:43 am

Sharon:

Thanks for your reply. I know it's hard for you to get in to see specialists where you are and I'm not dismissing the need for sleep studies, centers and specialists and please don't get me wrong - I am grateful to be where it is not so difficult or such a lengthy process to see a specialist, but I think there probably does need to be some kind of screening process here before pricey tests or equipment are prescribed.

I have a friend who has a friend who has serious sleep issues but because her insurance is very basic, she cannot find a physician or sleep center who will prescribe a sleep study unless she pays for it up front - her insurance only pays like 50% and I don't think it would pay anything toward a cpap machine. It just seems a bit ironic that my insurance has paid 100% of my study and machine without even batting an eye. No wonder our insurance premiums are so high these days. Thank goodness my employer picks up the biggest chunk of the premium for myself and my husband, and we have pretty good coverage, but I certainly feel that a large number of physicians find someone with decent coverage and the first thing they do is start rubbing their hands together with glee, then the second thing they do is get out their prescription pad and start prescribing tests and equipment, etc.

I guess I'll give it one more shot trying to see a sleep specialist to try to find out what I really need to do and if I DO need cpap therapy then I will put 100% effort into adjusting to the machine. If I don't maybe I can give my machine to my friend's friend who can't afford one of her own.

Thanks again.

kteague · Post by **kteague** » Fri May 09, 2008 9:45 am

Sharon,

I understand you not wanting to do this if not necessary. Who would do this just for the "fun" of it?! Early on I gave up and quit, but tried again and with perseverence was successful.

About having only mild apnea - that diagnosis already allows for a number of events that is considered "normal". By even getting this diagnosis you have passed what is expected in the general population. Getting this diagnosis requires meeting specific recorded data. And you're right, probably most of those tested will be diagnosed because they went there because they were symptomatic. It's like saying auto transmission shops tell most of their customers they have transmission trouble - of course they do or they wouldn't have been there.

Have you reviewed your study results in detail to see if what's there substantiates your beliefs? Your AHI may sound harmless, but remember you have to multiply that times the number of hours sleep for the full picture. And look at how many of those caused arousals. Did your oxygen drop at all? Did your heart rate fluctuate because of the events? There's so much more to your diagnosis than the word "mild". If you're going to walk away from this, just be sure you are fully informed. Did you see the recent episode of 60 Minutes on the importance of sleep? And they weren't even talking about sleep apnea.

In days long ago, people often suffered and/or died without even knowing the cause much less if there was anything that could have been done for them. Medical advancements have progressively changed, and with each new discovery, the masses have flocked for diagnosis and treatment. I particularly think of breast cancer diagnosis and treatment. Some argue that mammograms are ordered too often and biopsies done unnecessarily. Those who aren't taking that position are those whose life was saved by an early diagnosis. I see parallels in the sleep field. On this forum you won't find many who tested negative for sleep apnea - rather mostly those grateful for where we are today in diagnosis and treatment.

Hope you sort thru all this in the way that's best for you and your health. If you do find reputable studies backing your beliefs, please do let us know. Maybe do some reading over on PubMed on sleep and see what you find. Good luck.

Kathy

okie · Post by **okie** » Fri May 09, 2008 10:12 am

Thanks Kathy and Sharon and everyone else who are helping resolve some of my issues. Once I have reached a decision as to how to proceed further and/or have additional answers or questions (probably the latter) I will let everyone know the outcome. You have all been helpful and instrumental in my first decision to get a second opinion. I'm old school (and old - 61 next weekend) and was raised to believe that doctors, policemen and teachers can do or say no wrong - now that I've returned to the planet earth and realize how naive I have been for so long by listening to doctors and not asking questions when something seemed "not quite right", so now I guess I've gone completely the other direction and question their motivation for EVERYTHING they say and do now. I have a hard time trusting that they are actually looking out for MY health rather than the health of their bank accounts.

I will keep you all posted.

ozij · Post by **ozij** » Fri May 09, 2008 10:21 am

Are you sure you automatic machine is set at 4, and not at a 4 to 20 range? Its quite possible that they are trying to give this machine as an altrenative to a sleep study titration.

With an M-Series machine, you can see your AHI (how many events you have per hour) on the LCD - it you can't, forum members will tell you how to activate it.

You ability to do your beloved job may be eventually seriously limited by the results of sleep apnea.

I find it extremely difficult to believe that any doctor or DME would set you up with an automatic machine just because they were money grubbing. A state of the art automatic machine has the same insurance code a simple one does - and when the system gives you an auto it makes less money than when is gives you simple machine. A money grubber would give you a plain vanilla machine, not an auto.

I'd be far more inclined to think the RT who set up your machine did not know it, and did not know what she was doing - which would explain why you feel the therapy is so worthless.

I remember the first weeks - they were dreadful. You're not the first person to feel that the theapy makes their sleep worse. But you have to realize that this is a temporary state.

If you take the time to browse this forum (and I hope you will) you'll find that many of us will be very happy to try to help figure out what is making this therapy so annoying - and what can make it better.

There is a tremendous amount of experience and knowledge here - by people who have had to learn a new way of sleeping - and who have managed to do it.

The mask may be an issue.
Hose handling may be an issue.
Too much, or too little, humidity.
And your pressure setup maybe an issure too.

I hope you will let us help you.

By the way, you may find the following interesting:

http://www.mayoclinicproceedings.com/in ... ref=7609a4

Postoperative Complications in Patients With Obstructive Sleep Apnea Syndrome Undergoing Hip or Knee Replacement: A Case-Control Study

Abstract

Objective: To identify and assess the impact of postoperative complications in patients with unrecognized or known obstructive sleep apnea syndrome (OSAS) undergoing hip replacement or knee replacement compared with control patients undergoing similar operations. Although OSAS is a risk factor for perioperative morbidity, data quantifying the magnitude of the problem in patients undergoing non–upper airway operations are limited.

Patients and Methods: This retrospective, case-control study from a single academic medical institution included patients diagnosed as having OSAS between January 1995 and December 1998 and undergoing hip or knee replacement within 3 years before or anytime after their OSAS diagnosis. Patients with OSAS were subcategorized as having the diagnosis either before or after the surgery and also, regardless of time of diagnosis, by whether they were using continuous positive airway pressure (CPAP) prior to hospitalization. Matched controls were patients without OSAS undergoing the same operation. Interventions were defined specifically as administration of a particular treatment in the context of each complication, eg, supplemental oxygen, implementation of additional monitoring such as oximetry for hypoxemia, or transfer to the intensive care unit (ICU) for cardiac ischemia concerns. Postoperative complications were assessed for all patients in the different categories and included respiratory events such as hypoxemia, acute hypercapnia, and episodes of delirium. Serious complications were noted separately, including unplanned ICU days, reintubations, and cardiac events. The length of hospital stay was also tabulated.

Results: There were 101 patients with the diagnosis of OSAS in this study and 101 matched controls. Thirty-six patients had their joint replacement before OSAS was diagnosed, and 65 had surgery after OSAS was diagnosed. Of the latter 65 patients, only 33 were using CPAP at home preoperatively. Complications were noted in 39 patients (39%) in the OSAS group and 18 patients (18%) in the control group (P=.001). Serious complications occurred in 24 patients (24%) in the OSAS group compared with 9 patients (9%) in the control group (P=.004). Hospital stay was significantly longer for the OSAS patients at a mean±SD of 6.8±2.8 days compared with 5.1±4.1 days for the control patients (P<.007).

Conclusion: Adverse postoperative outcomes occurred at a higher rate in patients with a diagnosis of OSAS undergoing hip or knee replacement compared with a group of matched control patients.

Mayo Clin Proc. 2001;76:897-905

O.

sleepycarol · Post by **sleepycarol** » Fri May 09, 2008 10:27 am

I too am with O on this one.

It would be hard for me to belief that they would give you an APAP and set it in cpap mode at 4. If they were going to do that they most likely would have given you a bare bones machine to increase their profit.

Double check to see if it is actually an APAP and what the settings are.

pjwalman · Post by **pjwalman** » Fri May 09, 2008 10:40 am

It just seems a bit ironic that my insurance has paid 100% of my study and machine without even batting an eye.

First of all, I am jealous! My co-pay for the sleep study is $450, and even after the insurance kicks in, my portion of the CPAP machine alone is $1000, not talking humidifier, mask, hose, etc. So thank goodness that at least nothing is coming out of your pocket!!

I, however do not feel that my level of sleep apnea (mild) does not justify it, especially when I am only getting 2-3 hours of sleep a night and have a full-time job I have to go to during the day and need to be able to function a little bit better than the zombie I've become for the past several weeks.

The emphasis is mine. Do you know how many of us have describied ourselves as zombies to our doctors or something very similar? My guess would be tons! That just may be the apneas talking.

An acquaintance told my husband if the setting was less than 7 they probably just took my money - it's at 4.0.

I agree with the others that, at a setting of 4, it isn't any wonder you'd be feeling like crud. Honestly, I don't know why they even have that low of a setting. To me, that setting feels like I'm just breathing my own breath.

I know you don't want to fuss with it right now, but you know what I'd do if I were you? Instead of dinking with another sleep study at the moment, I'd let one of the knowledgeable people here help you to set your machine to maybe 6 so you can see if you can tolerate that better, and then I'd give the CPAP a try for about a week to see if maybe it doesn't help you start waking up a little more refreshed. It can't hurt anything to give it a week's trial. A setting of 6 isn't going to bring on any centrals, I wouldn't think, so there shouldn't be any adverse effects that I can think of anyway (and, believe me, I am not one of the experts here). A week out of your life just as a healthy experiment wouldn't be so bad, would it? Knowing how 4 feels, I can sure see why you'd be balking at using the machine! Ugh!! But since it hasn't cost you anything up to this point, why not do a little personal exploration of the potential benefits of CPAP for you before you start having to go into your own pocket for a doc's visit, possible new sleep study? Just my two cents worth.

Good luck, and take care!

Peggy

I don't feel I need cpap therapy-anyone else feel this way?

I don't feel I need cpap therapy-anyone else feel this way?

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