Hey guys & gals!
First of all I wanted to say THANK YOUUUU for the warm welcome I’ve received! I am super happy that there are people willing to spend their free time helping others! I wish someday, when I learn a thing or two about this, to be able to contribute as well.
In the mean time, I’m having somewhat of a disagreement with my Dr. After he gave me the machine to measure my respiratory patterns at home for one night, the report from that study was pretty conclusive in that I had moderate sleep apnea. He then said he wanted to double check the result, so once again I took the device home and re-did the test. Same result (AHI was 1 point higher, not much aside from that).
Now my Dr wants me to come in to the lab for a PSG. After that he said he wants me to come back AGAIN for another PSG this time with an auto-cpap to “calibrate” the pressures at the lab.
This is really cumbersome and is becoming EXPENSIVE!!!! I am dealing with clear symptoms of sleep apnea, I have 2 tests that confirm the diagnosis and still he wants more.
Now, I read somewhere that “calibrating” the cpap during a PSG is totally unnecesary since the auto-cpap will self calibrate while I use it, and I can download the data and take it to my Dr after using it for a while....
Why the hell is he making me go to the sleep lab soooooo many times, when he could easily give me the prescription for the machine, and “calibrate” it with the usage data? Could he be shaking my insurance for cash? Also every time I go, he gets a copay which is expensive for me! By the time we are done with the tests, I will barely be able to buy the cpap machine.
Am I wrong here? What should I do?
Thanks!
Hello again drluigi
I don't know what to say which is a rare moment for me.
And it's all your fault!
If you didn't make such bad choices
Like living in the wrong country
With the wrong health systems
And the wrong insurance systems
I really don't know how things work over there so any advice I might offer is totally invalid.
The way I would normally deal with something like this over here is to take control.
Tell them all to go jump, figure out for myself what was needed and just do it!
If only life were that simple eh?
I did throw you off didn’t I?
My main concern is that I don’t want to be unreasonable. If 3 or 4 sleep studies are needed and must be done, well I’ll just bite the bullet. however if I can do without all that, then I know something weird is going on...
Like I said, a PSG at the sleep center to “calibrate” an auto-cpap (which as far as I know is meant to auto-adjust), sounds like something I could do without, considering it costs money.
I don’t want to be an a-hole with my Dr, that’s why I wanted to double check if maybe I was on the wrong or being too demanding... 🤷🏻♂️
Oh a real question requiring a real answer! :O
You are speaking to the profoundly ignorant here drluigi.
And not just because of your bad choices. :)
Others know stuff .............
But they're too busy snoring.
I'm just here to create chaos. :)
People appreciate support on this forum--that's why it was created. Your point about people being too busy is well taken, but could also be seen as scaring people off from commenting. But at least you are posting and hopefully trying to help out someone in need. Just a friendly observation.
Hi Ruby,
I agree that my twisted humour carries some risks.
I am on the wrong side of the globe so the snoring was only for a few hours knowing that Sierra and other dependable responders would be back shortly.
My intervention was intended to encourage the poster to return but I acknowledge that I went over the top and had way too much fun.
My apologies to drlouigi
Friendly observations are well deserved Ruby, especially in this instance.
I note that you created some fun and meaningful threads a day or three back. (More of that twisted humour)
Perhaps you could do so again?
Maybe the subject should have been How To Have A Meaningful Discussion With Your Doctor?
That might be a subject that I have a teensy bit of experience with.
Then you could follow up in a few days with
How To Find A New Doctor and the sequel
How To Recover My Medical Records
If you play your cards right you could have an entire series ....... :)
With the final thread being
How Do I Escape From This Country? (Could someone loan me a ladder)
Or better yet
How Do I Get To Australia? (Can I borrow your canoe Sierra?)
Anyways I've probably been too helpful already so let me conclude with my opening statement.
I really don't know what to say. :P
If you have had two at home sleep studies done which are in the moderate range and only differ by one point, then that would seem very conclusive that you have sleep apnea. Assuming there are no complications such as moderate or high central apnea indications, there are two reasonable choices. First you could go and have an in clinic titration study to establish the required pressure for a fixed pressure CPAP. And your other option as you suspect is just to have the doctor prescribe an auto CPAP and set it up with a fairly wide range. From there you can either fine tune it yourself with SleepyHead for guidance, or bring the data to your clinic and let them fine tune it. With an APAP there really is no need for a titration sleep test. And since there is a very low difference in cost between a CPAP and an APAP, the APAP without a PSG or titration test if far cheaper if you paying out of your pocket for the tests and the machine.
You should first ask for a printed or PDF copy of the sleep study reports and check to see there is anything complicating about them, which mainly would be evidence of significant central apnea. If there isn't, then if it were me and I was paying out of pocket, I would ask for a prescription and buy my own machine (you need a prescription for machines and masks in the US). If he won't give you a prescription then if you take your sleep reports to your GP, then I think they would write one. At least that is the way it works in Canada.
Hi Sierra! Allow me to say, you are the best, you really seem to know this stuff!
Indeed I had 2 home tests with a RESMED monitor, and both gave almost exact results (except like I mentioned AHI 1 pt higher) I looked at the report and it says I had no central apneas. Desaturation is in the same range, and snoring looks the same as well.
So, you are saying that based on those studies and my persistent symptoms, a sensible Dr would skip the expensive stuff, and take advantage of the APAP functionality?
He said he was going to prescribe me the Resmed Airsense 10, which I know is an APAP, and a pretty good one because you can monitor everything with this “sleepyhead” software.
I do have some insurance coverage, but I also have high copays, and I will be reimbursed only for 40% of the price of the APAP (no coverage for mask). So as you can see, costs are piling up.
It is a difficult conversation to have with the Dr, because after reading what you said, he is either giving me all these tests out of greed (whacking me like a cash pinata) or out of not giving a crap whether I can afford all of this or not... Both options sound bad.
At this point would you say: take the tests to GP, ask for the prescription for the APAP and get it? How would I calibrate it later on? Would I need to look for another sleep specialist to look at the data (because this Dr said he would not prescribe me anything until I took all those tests).
Oh and I forgot, I had an MRI, EEG, and an EEG mapping already done, and, according to the Dr I would need a second EEG mapping at the lab after the PSG with CPAP titration, for some unknown reason....
It’s getting ridiculous... plus I had the diagnosis for over a month and a half now and I’m nowhere near starting treatment. If I do all the tests, I could start as soon as March he said.
Sierra is out trying to find his paddle. :)
On a slightly more serious note drluigi
Don't go in with all guns blazing.
Leave the frustration and anger at home and focus ONLY on the fastest and smoothest path to whatever outcome you want.
That might require some notes with dates and figures etc but stay focused on your immediate goal.
In other words keep it simple and play it cool.
If you feel compelled to outline your grievances do so AFTER you have the desired paperwork in hand.
Just advice I give myself in similar situations. :)
As for setting the machine up afterwards. I did it myself from scratch and I had no prior knowledge nor any forums to refer to.
If you choose the independent route you shouldn't have any problems getting it sorted.
First off, I am not a medical professional, just a CPAP user that takes some interest in the technology of the machines. My observation is that the apnea treatment field is in transition. The old traditional approach was to do an in lab overnight PSG. If it was positive for apnea, then the next step is an overnight titration step in the lab to determine the fixed pressure for a CPAP. You are sent away next with a trial machine set up to that pressure, and after a week or a month then you bring them the results for any tweaks required to the pressure. Now with the auto CPAP or APAP so common and inexpensive, I would say most clinics would simply set up the machine with a wide range after the positive test and jump to the at home trial stage. And the even more later development is the use of the ResMed and Phillips at home sleep study equipment. Labs here in Canada that use the at home approach, would have gone from your first positive test of moderate apnea to the at home trial of an automatic machine.
This process gets complicated a bit by the various jurisdictions, the US Medicaid system, and insurance companies. They can force a stepped approach; Sleep Study in Lab - Titration Test in Lab - Fixed CPAP - At home trial - If that fails, then APAP, at home trial, ..... If you have insurance and are essentially paying a substantial amount it makes sense to me to cut to the chase for economics and expediency. The condition however is that is in the absence of complicating factors such as heart and lung disease or other issues. The basic no complications process leaves out the in lab tests and titration and just jumps straight to an APAP.
If you want to go that route and you can see a GP soon, perhaps just ask the GP what he/she needs to write a prescription. If the system is the same as Canada, the GP can request a copy of the report from the sleep specialist and use that to write a prescription for a machine. I believe the same as in Canada courts have determined that medical records belong to the patient and the medical profession has no right to withhold them from you.
As for a machine the suggested ResMed AirSense 10 AutoSet is a good one, probably the best on the market. It comes in a For Her version which is the same price, but includes an extra optional mode that has been optimized for women and potentially can work well with men too that have lower pressure needs (<12 cm). I have the standard AutoSet, but if I was buying again I would buy the For Her version (despite the color and flower pattern!).
Setting the machine up is not that hard, and you can monitor your results as you have already determined with SleepyHead. Assuming you are in the US it pays to shop around for prices on machines. There is a place called SecondwindCPAP that sells both used and new machines at good prices. There may be better places. I am from Canada so have only shopped seriously here.
The final issue to consider is that not everyone adapts well to using a CPAP, and typically the mask is the biggest issue. Here, the sleep study companies offer a free trial of a machine for two weeks. They also put ridiculous prices on their machines (like $2400 for a machine and mask). But, here at least you can do the trial as I did, then return the machine and buy the machine and mask on line for $850 or so. I am assuming if you go down the GP prescription and buy it yourself route, then you have bought in, and can't back out. There are some companies such as CPAP.com that offer return insurance on some things like masks, but I'm not sure about machines.
You may also want to contact your insurance company and make sure they are on side with your course of treatment. Generally the lower the cost to them, the happier they are, but when you deal with bureaucracy you never know!
Hope that helps. If you have any questions, just ask...
Here is a link to an article that discusses how the apnea field has evolved, and the reasons around it.
If he was going to ask for an in lab study any way, why did he do the home studies? It does seem like a waste of time and money. And If he wants you to do an in lab study with a CPAP, why not do a manual titration? I am coming across this sort of thing increasingly - expensive home studies followed by an in lab study which renders the home study rather pointless. Of course, where I am the in lab study is free, which makes the home study seem especially wasteful.
In Ontario Canada, they have kind of a goofy system where you can get a home study (not sure who pays), but if it is positive then you have to go for a full in lab study before they will write a prescription. This seems to be driven by the health care plan there which pays for most of the cost of the CPAP. I suspect they want to make it difficult to get one, because they are paying.
For the OP, I suspect he was not far off the mark with the "ripped off" conclusion. That sequence of testing is the worst I have ever heard of.
Sleep apnea is a very frustrating issue. It sounds like you need to have a good talk with your doctor. Before you go, learn all you can from a reliable source about your condition and the tests you have had and are being asked for. Ask for a consultation. Bring all your information with you. As Gremlin said, don't demand--ask. Tell the doctor all your concerns, especially about being able to pay for all of this. It comes down to this--respect your doctor BUT you are the patient. This is your life, health and well-being. You have a right to be involved in your care. Know what options are out there, including finding a new doctor if necessary.
