Another OSA "scam" thread

[MagicCityDawg]

The receptionist just called from my sleep study, and told me I do have apnea, that sleep apnea is diagnosed at 10 episodes per sleep hour, greater than 30 is severe, and I had over 68 episodes per sleep hour. Obviously, I need CPAP, or else I'm going to die, and quick. They'll send my script over to their preferred DME, and go get it tonight, your time is short.

First, I told her to hold my script, I wanted to discuss with other DME's. Her attitude toward me changed 180 degrees, and she was barely cordial from that point on. When asked for a copy of my sleep study, I was told it wasn't complete, but I could pick it up tomorrow. When asked when I could speak with my doctor, she told me he wasn't available, and I'd have to make an appointment. So, apparently I was to go to the DME without a followup or consultation explaining the results of my study.

Secondly, I purchased an oximeter and used it last night. It scored events as a desaturation of 4%, of which I had 7 in the course of 5 hours (apparently it left my finger around 3:30AM). Of those 7, only one dipped below 90% (at 89%). My average SpO2% was 96.1%, my low was 89%, and my average low (?) was 91.9%.

Does this mean anything besides the fact I need to find a new clinic for subsequent OSA treatment? I know that raw data doesn't lie, but their attitude and approach makes me wonder if they manipulate the data.

Is there a direct correlation between O2 desaturation and apnea events? Is it possible to have an event without a 4% desaturation?

Due to exceptional insurance, I'm going to get the machine regardless, as it certainly can't hurt. I accept the fact that I have an OSA problem, and would benefit from the machine. I'm skeptical of the "68 events per sleep hour" number.

In better news, I called a DME here in my town, and he told me he had the S9 Autoset in stock, and he had no problem giving me that machine. We'll see. So far, he's saying all the right things.

[Pugsy]

Data doesn't lie. 68 events per hour is surely plausible. I have seen many here post more than that. I have "mild" OSA in non REM sleep about 12 events/hr but in REM I go way up to over 50 events/hr, so that one is severe.

Oxygen levels don't always fluctuate wildly with events. Some people have significant desats and some don't. So yes, you can have enough events to be "severe" yet not have a huge drop in Oxygen levels. This is why just going by oxygen level alone doesn't mean that a person with not much of a drop in O2 doesn't have OSA. Of course if someone does have a large drop, then OSA sure is front runner for cause.

Get your RX and copy of your results and go to the DME that will give you what you want. Maybe Sleep study receptionist at the Center realized that no more money could be made off of you since you wanted to go elsewhere. Maybe she just didn't want to "deal" with an educated person. Some people are like that.

Wait to see if and when you see the actual sleep doctor for follow up before worrying about going to another sleep doctor. The attitude that the receptionist had might not be what the doctor might have.

[Tip10]

but their attitude and approach makes me wonder if they manipulate the data.

I'm skeptical of the "68 events per sleep hour" number.

Whenever I see these posts and statements like this it always makes me wonder... why would they do that? -- what would it gain them to manipulate the data?

I realize the data may not have said what you wanted to hear but seriously -- what gain would it be to the sleep study folks to manipulate the data?

I mean seriously -- they singled you out and manipulated your data to say you have severe OSA when you really don't because.... because.... exactly why???

You don't tell us when you had your study done -- if it was within the last day or two it is easily conceivable that the results are not written up enough to be presented to you and its not usual for you to need to schedule the follow-up appointment to see the doc.
What is correct is that if indeed you do have severe OSA (which the numbers do seem to indicate) the quicker you get into treatment the better off you will be.

Good luck.

[dtsm]

First, send your doctor a written request for the sleep study; they are by law obligated to provide you with the same in a timely manner [you can even mention this when making the request]. Or as others suggested, make sure to get a copy when you follow-up visit/doctor. He might not be as unprofessional as the receptionist. If you have severe OSA, try to get in asap.

Second, in ideal world, you want a flat saturation line, hovering about at least 90++%, preferably > 95%. Dips usually mean events and only the sleep study will tell you the the causes. Your doc should be able to discuss that with you.

It has been said before but worth repeating:
1. Insist on an apap [auto adjusting cpap machine] unit, not just a straight cpap unit.
2. Make sure the apap unit has full data capability.

The S9 autoset is a good machine; learn to use the data functions and stay in touch. We're all here to help!

[Pugsy]

So, apparently I was to go to the DME without a followup or consultation explaining the results of my study.

I just saw this part that you said.

It is not uncommon for the DME to get the order and a person not have a face to face or even phone to phone with the sleep doctor till later (if at all). My follow up was at the 90 day mark to check for compliance and see how I was doing. Since I had my own machine, no need for the compliance stuff, just talked to PA about how things were going...

You of course could wait till you get that follow up appointment to discuss things but I wouldn't.

[tschultz]

I don't understand how you can put the word SCAM in the title. Sure you may not have heard what you wanted but I saw nothing that would really throw up a red flag. I worry that titles like this, if not proven to be true, may present the wrong idea for people first finding places such as this.

When I was first diagnosed as having an AHI of 119 I was quite frankly floored, when I though about this for a minute I though to my self, an apnea event has to be more than 10 seconds to be counted so that means basically 20 out of every 60 seconds I was not breathing, how can this be, something must be wrong. I was then told that some of my events lasted as long as 62 seconds, this floored me even more. I was then given the news that at my levels he had to report my condition to the registry of motor vehicles and my drivers license would be suspended until I could show 2 months of treatment compliance, at this point I had all be "news" I could take and did not pay much attention after that. I then was promptly booked for a CPAP titration study a few days later and was told that once my data was analyzed I would be contacted with the prescription to arrange a home trial and that I would only be seen by the sleep doctor again if absolutely necessary because of surprises in the new data.

That evening at home I started to digest all that I had been told, and although I was tired I did not realize how bad I really was. I wanted to understand things a bit more so started to research things. I found this forum and quickly determined that a pulse-oximiter would be a good thing to have and ordered one the next day. A week later my oximter arrived and I wore it that night and could not believe what I saw when I reviewed the data; my oxygen levels were dropping to as low as 58% and averaged much of the night in the low 80's - this quite frankly scared the crap out of me. I quite literally had one foot in the grave!

I knew I had problems snoring (my wife complained for years) and over the past year I was putting on weight even though I was trying to lose weight. I knew something was wrong, I just had no idea that is pretty much all sleep related.

I am still, after 38 days, still on CPAP trial because things seem to happen rather slowly around here. I would not even be on treatment yet had I not pushed very hard with everyone I could find once I was armed with my oximiter data. Like you I was told that I would have to make an appointment if I needed to speak with the sleep doctor - a typical 6 month wait.

I do not believe your data was manipulated and yes, people can have large numbers of events per hour, but I would think that anything over 150 is unlikely IMHO without major issues. I recall one person commenting that in their study they actually had an apnea event as long as 180 seconds, and I thought I was bad! Even when I started treatment, my prescribed pressure was not enough I was still seeing my AHI at 17 and 43; levels at which severe apnea would still be the diagnosis. I looked at each and every apnea event and trust me they were there - it was quite an eye opener to realize how much abuse the human body seems to be able to endure, it does take its toll however. I am now running an AHI from 1.5 to 4.5 based on the past 3 weeks of data, and my oxygen levels drop no lower than 92% all night long.

Please stay on top of things and don't be surprised if things take a bit of time to happen, but don't be afraid to push where you can. I took a very aggressive approach, even taking over my own settings (could not wait for the sleep clinic to decide after waiting over 5 days) while still on trial, and it has been an uphill battle all along. I have been lucky that the good people on this forums have helped me very much, for which I can not stress my gratitude enough) and I also have a great RRT from whom I have the loaner equipment. In spite of my frustrations I am so very glad that now things are settling out and my health is improving, I feel better than I have in years even though I know it will still be months before the years of damage caused by sleep deprivation is repaired (as best they can be).

[Janknitz]

It is very possible to have events without desaturation, but over time your events may become more severe and difficult to recover from. I don't have a scientific basis for this, but it appears to me that significant oxygen desaturation from OSA is something that develops in later stages of the disease process, as the apnic events get longer and longer and more difficult for your body to recover from.

It's perfectly OK to be a careful consumer--to shop around for the DME and equipment of your choice, within the limits of your insurance and out of pocket budgets. But we're all hearing some "healthy denial" in your initial post too. Denial is perfectly normal and EVERYBODY has to go through it. Just t be aware that it's present, especially as you struggle with your first few nights with the machine. Adjusting to the machine can be difficult, and that denial will really have you trying to convince yourself that this IS a scam and you don't need to put up with all of this. It's going to take a lot of willpower to push through all that, and at 68 AHI, you cannot afford not to!

Hang in there, we're here to help.

[kteague]

Just want to mention that since your oximeter came off before mnay get the most REM (and have the most events), don't let that night's data give you a false sense of security. As someone on here has so aptly said before, one night does not a trend make.

About the receptionist's attitude, if she was simply the messenger, anything outside the routine was going to rock her boat (and her schedule), so it may have been as simple as that. Not that it's an excuse for not being helpful, just saying I wouldn't let that cause me to change doctors.

You are on a quest to be legitimately informed on this subject, so questioning everything is a part of that process. I'm sure you'll come to informed conclusions. Best wishes as you go forward.

[msradar65]

I think what you are seeing is par for the course. I didn't see my sleep doctor until I had been on CPAP little over two months and was having a problem. Then he saw me within 48 hrs of me speaking with the nurse.

To be completely honest with you. If your DME is doing there job as far as patient teaching is concerned and with all the help here on the site I really didn't need to see the doctor.

Those pulmonary appts are very expensive. Now that I have had a problem...my doc will see me two months from now to see if I am doing well or if we need to make some changes.

The tech at the sleep lab however made sure I was sent a copy of all my sleep studies, interpretations and notes in my chart as well as a copy of my prescriptions. They also sent over a copy to my family doc as well. When I went for my sleep study they asked me did I have an fax machine or e-mail address I wanted my results so I would have a copy.

[jonquiljo]

My question would be why you ended up with a sleep study to begin with? What symptoms are you experiencing, if any? Are you tired during the day, have high blood pressure, etc.? Something must have been suspect or you wouldn't have been there.

While lots of clinics/DME's can be scammy - it doesn't matter if you have OSA. It can take easily 2 months or more to get a follow up appointment with a Dr. They are really few and far between and booked solid. It is unfortunate that you have a DME to deal with, as they don't usually care about how you are feeling about things - they just want to make money.

First of all, get a copy of that sleep study - it's yours to have. It (and this board) can tell you what is likely going on medically. Also get a copy of a prescription. If you can't get it sent to you directly, it is very suspicious. That would be a big red flag.

If you can get a copy of your script, it may be advantageous depending on your financial means and insurance support. If you can afford it and don't have the greatest coverage, you may be best buying a machine online. Having exceptional insurance isn't always the greatest for CPAP coverage. It's faster and far less involved to get a machine online. If you can afford to go out and buy a pulse oximeter, you may be easily able to afford a machine from an online store. BTW, pulse oximeters are good as adjunct equipment, but one partial nights data from an oximeter doesn't mean much.

Welcome to the 21st century - medicine isn't going to walk you through things much anymore. But also understand that OSA is not a death sentence if you deal with it. Dealing with it can be a life improvement that you will be quite surprised at. No, it's not the greatest being tied to a machine and hose every night. But, if you feel better (and I certainly never expected I would) - it will be worth it 100 times over. I have never slept better since I was 10 years old. I can get less sleep and feel better the next day. And I tried CPAP in the old days (15 years ago), hated it and quit. Now machines are really easy and helpful. If only you can get past that nasty DME stage ....

[DreamDiver]

I agree with Pugsy. Sleep docs rarely want to see you. You probably are safely in need of CPAP. However, the doctors would rather sign off on the work the sleep techs do after checking to make sure it's correct. Less chat, means more patients per hour. No chat means they can get through your paperwork in minutes. In some places it's like a factory, if you're not specific about what you want. Insist on a follow-up with the doctor if you have questions. It blows my mind that a doctor can legally make a decision about any patient without physically spending at least fifteen minutes in a consultation room with them prior to any kind of diagnosis or prescription.

• Tell the doc you want the full reports for both studies including doctor's notes all condensed graphs.
• Tell the doc you want an Auto (Preferably an S9 Autoset or a System One Auto), the humidifier and mask of your choice.
• You want the original prescription in writing in your hands - not sent to some DME the doctor chooses without your consent.
• Research DME's and get references before you even approach one.
• Research masks to make sure you get what you need - not what they persuade you to take at the DME.
• Before you sign anything, find out what your costs would be for your out of pocket expenses alone. Do a spreadsheet, and don't forget that when January comes again, you'll be paying a lot more per month than when you started. Chances are very good that if your insurance has a 10 to 13 month 'rental' period, you'll pay more out of your own pocket than if you were to buy the machine directly from cpap.com.
• One the other hand, if you get a choose DME, you may get a chance to try other masks, other machines.

Good luck.

[jonquiljo]

[*]Before you sign anything, find out what your costs would be for your out of pocket expenses alone. Do a spreadsheet, and don't forget that when January comes again, you'll be paying a lot more per month than when you started. Chances are very good that if your insurance has a 10 to 13 month 'rental' period, you'll pay more out of your own pocket than if you were to buy the machine directly from cpap.com.

And less of the "aarrggh" factor! Places like cpap.com treat you like you are spending real money (aka Amazon.com) and try to help you feel good - like a real customer. DME's are like buying something from the DMV and getting "buyers remorse" from the "puke factor." Unfortunately they epitomize the worse aspects of our medical system. Insurance companies make the math come out in their favor and it will generally just infuriate you. Good luck.

[theguest]

Kteague is on the ball. If your SPo2 came off before Rem sleep you don't know how many desats you really had as that is where many occur. Try again with the SPo2 on all night.

[MagicCityDawg]

The "scam" part is more a comment against the sleep clinic. If I didn't think I had a problem, I wouldn't have asked my GP for a referal.

As it turns out, I've never seen a doctor. The doctor only comes in on Tuesdays. My appointment was on a Thursday. I don't know if he was an RT or what, but my experience was 10 minutes with whoever that guy was, a sleep study, and grief with the nurses ever since.

I called back today about my 'script. I asked if it was for a specific machine. She told me yes, it is, and that Respronics is their recommendation. I asked they modify it for a generic CPAP machine, and was told she wouldn't have the 'script changed, that was their recommendation. I'm hoping as it's a recommendation, it doesn't say dispense as written, as I'm pretty sure I want to use the S9 Autoset. We'll see anyway. I called the DME I selected and he said that it may not be a problem, and he's had trouble with this clinic before.

What is unsettling is that this whole thing has no semblence of a medical issue. Someone brought up a DMV analogy, and that is spot on. My referal was to this place http://www.americansleepmedicine.com/index.php. I've been told that they write every 'script as Respronics due to some sort of agreement with them. The experience has been bad all around, with the exception of the guys the night of the study. If I ask any questions, or try to get more information, I'm treated as though I'm difficult to deal with. I want to get on the machine and get started, or I'd have fired these guys long time ago and went to another clinic. As it is, I'm hoping getting the 'script will be my last interaction with them, after which I can select a new clinic for future needs/follow up.

[BlackSpinner]

The "scam" part is more a comment against the sleep clinic. If I didn't think I had a problem, I wouldn't have asked my GP for a referal.


I called back today about my 'script. I asked if it was for a specific machine. She told me yes, it is, and that Respronics is their recommendation. I asked they modify it for a generic CPAP machine, and was told she wouldn't have the 'script changed, that was their recommendation. I'm hoping as it's a recommendation, it doesn't say dispense as written, as I'm pretty sure I want to use the S9 Autoset. We'll see anyway. I called the DME I selected and he said that it may not be a problem, and he's had trouble with this clinic before.

If it does say that, take it to your regular doctor and have them re-write it. There are samples of scripts floating around and on cpap.com. print them out. The one on cpap.com just needs the blanks filled in.