Frustrated with seeming OSA misdiagnosis. Can I ask them to re-read my study?

[radler]

I'm so overwhelmed by everything right now, I don't even know where to start. I did read the newbie post and don't think this is breaking any rules, but feel free to correct me if I missed something.

I've gradually been getting worked up for issues I've had since childhood that got worse when I was a teen. I just had the blood work for CF done today (and boy what a week for that!), but I have severe pancreatic insufficiency and if nothing else, that has probably been the cause of many of my issues for half my life. Daily malnutrition and dehydration are no joke!

One of my symptoms since childhood (but worsening sharply after a near death experience under sedation several years ago) is frequently waking up feeling like I can't remember how to breathe. Not like I'm choking or anything, just like "Error! Automatic_Breathing.exe has crashed." So as part of getting my symptoms figured out, I was supposed to have a sleep study to rule out hypoventilation and possibly central sleep apnea. But apparently things got mixed up, and I was only given a home sleep study. And then, instead of being referred for my in-lab study afterward or even seeing the doctor who read the report, I was just mailed a prescription saying I had obstructive sleep apnea and to go get an auto CPAP, bye, go away, there's zero follow up! Home sleep studies shouldn't be used to rule out central sleep apnea or hypoventilation, right? I don't get what happened here. I just feel like someone (or several someones) really phoned in my results!

My sleep study itself said I slept mostly on my back with some time on my sides and no time on my stomach, but I am a hardcore stomach sleeper, and I know for a fact I fell asleep on my stomach and spent most of the night that way (because the tube in my nostrils kept hurting and waking me up, lol). My reported symptoms and medical history are wrong (for insurance reasons?), such as saying I complained of snoring when I have NEVER really snored. And there's contradictory info between the doctor's report and the sleep study results, e.g., the results say I snored for a total of like 10 seconds for the entire night, but doctor's report says I was snoring heavily throughout. Were they just making stuff up to make insurance sell me a CPAP? I feel completely ignored and neglected as a patient!

(To add insult to injury, I got pre-approval from BCBS, but while the sleep center and procedure were both in network, the doctor who read the report—the only one within 50 miles of me who does sleep studies!—was not. So I have a $300 bill, more than I make in a week, and they're refusing to work with me on it despite extreme financial hardship right now. And it was the wrong sleep study for what I was supposed to have ruled out! I'm so mad. Yes, I filed an appeal with my insurance company. I hope they pay it.)

I just feel like this is sketchy at best, and malpractice at worst! Was the sleep study just super careless with interpreting my study? Did I put the belt on upside down or something? Was the doctor more interested in looking at new BMWs than looking at the note that said what he was supposed to be ruling out?

Anyway, that leads to my question: Can I ask the center to have a different sleep tech score my data, correcting for whatever I did to mess up my sleeping position? Can I ask the doctor to re-read my corrected sleep study with my corrected medical info? Should I drive nearly 100 miles away to have another sleep study or get a second opinion? Should I not even bother and just treat myself? (That's what I usually do, tbh ) Should I just get this random auto CPAP he prescribed without ruling out any of the other stuff, because it's all basically the same, or is the risk of it worsening my current issues too high? I'm so confused by all of this! I wish I could just freaking trust the doctors to do their jobs instead of having to do it for them all the time!

(Nerdy stats: I had 0 apneas, 74 total hypopneas, 50 of which happened while "supine" aka actually prone, 16.5 AHI 3%/10 AHI 4%, mean duration 18.6 seconds, max duration 54 seconds. My average pulse oximetry was 94%, lowest total was <80% for less than 1 minute, lowest desat lasting over 1 minute was 85% for 554 seconds, and about 43 minutes total spent under 89%. 66 desats total, 14.9/hour, max desat 8%, the longest duration of max desat 48 seconds. Average HR was 71.6, lowest was 50, highest was 107.)

[nee]

Just by looking at your stats... perhaps it's time to stop depending on physicians and take matters into your own hands. Get the Auto CPAP (make sure it's Oscar compatible - I believe two popular models on here are the ResMed AirSense 10 Autoset and the Philips DreamStation Auto) and start using it and posting your results. If you're good about how you post the data and are open to help, the forum members on here will help you tremendously.

[Miss Emerita]

I can see why you are frustrated! I think the approach nee has recommended is sensible; you could also request a full polysomnogram study in a sleep lab. You can do these things in sequence, too. If you start with nee's recommendation and see a bunch of central apneas, then you can proceed to requesting the full sleep study.

I have a friend with primary central apnea. She is finding that her neurologist is her best resource for help. Have you seen a neurological specialist?

[ChicagoGranny]

I have a friend with primary central apnea. She is finding that her neurologist is her best resource for help. Have you seen a neurological specialist?

A neurologist is not necessary to diagnose and treat central sleep apnea. Sleep doctors accurately do it all the time.

the ResMed AirSense 10 Autoset

I would go this route. The machine display will show whether you are experiencing central apneas, obstructive apneas, both or neither. That would be the first step.

It would be a good idea to check with your insurance company about the rental period for the machine. Policies vary, so get details.

For future posts, please keep with this thread. For people in the forum trying to help, this makes it easier for them to follow your history.

Welcome! You've come to a good place for CPAP users.

[ChicagoGranny]

nee wrote: ↑Thu Mar 19, 2020 11:59 am
the ResMed AirSense 10 Autoset

You can have a look at the ""For Her" machine here - https://www.cpap.com/productpage/resmed ... r-humidair

[Miss Emerita]

ChicagoGranny is absolutely right, a neurologist is not necessary for getting a diagnosis, or even for subsequent medical care. But for people with primary CA, it's worth investigating the cause. The specialists involved could include neurologists, cardiologists, pulmonologists, sleep specialists -- more here:

https://www.mayoclinic.org/diseases-con ... c-20352109

[ChicagoGranny]

Poor Radler has some serious comorbidities. Just my opinion, but someone in that condition, should start out with an in-lab sleep study not home. If the insurance is a problem, a doctor doing his job well could speak to the insurance company's medical director, and I bet it would be approved.

[radler]

Thanks, all. Sorry for the delay; I had a very long day at work.

I'm just so frustrated to owe all this money when the doctor thoroughly screwed me over! I'm also reluctant to spend money on the auto CPAP machine if it will probably worsen my problem. Wouldn't I need a bipap or something else for CF, centrals, hypoventilation, etc.? Should I just try to find an older generation of one of those? Or should I get a machine that reports centrals and hypoventilation, do my own research, and get my primary care doctor (???) to prescribe me the right machine at the right settings so insurance will pay for it? (My PCP is pretty decent like that so I think she would, but it feels weird!)

I do not have a neurologist currently. I'm pretty burnt out on doctors at this point so if I don't *have* to, I'd rather not, but I'll keep the option in mind. I went almost ten years avoiding them because they were always so incompetent they made me worse physically (and, honestly, mentally!). This experience is obviously NOT changing my opinion, lol. I just figured out how to treat most things myself and went to online urgent care as needed. I can do it again if I need to. I may push for a sleep lab study in the future, but right now (mostly because of the pandemic), I think I need to hold off.

How can I know from my data (if I have it) or cheap/easy to obtain home equipment if I'm taking too few breaths vs. breathing too shallowly vs. having very short apneas? Will the Resmed Airsense Autoset note any of that? What about the S9 Autoset (not Escape)? Are there any features/differences in the S9 Autoset vs. Airsense that would be dealbreakers for my current situation? And could anyone please link me to some good, easy-to-understand, and preferably evidence-based info about hypoventilation treatment? I know a lot depends on the cause, but it's hard to sift through everything. Almost everything is geared toward OSA, so I'm confused by what machine I should be looking for. It seems like hypoventilation is really tricky to properly treat, even with knowledge of the cause. Since I don't know, how can I best treat myself (with my PCP's supervision)? I'm just really worried about the CPAP triggering the centrals again, because they're pure hell for me!

I do have a lot of, um, "fat" in the chest area that I can't do much about but I don't think my problem is the "Obesity Hypoventilation Syndrome" since I've had issues both as a kid and as a smaller-busted adult. I do also take temazepam to sleep, but that was prescribed very recently. Actually, it was prescribed because of severe sleep deprivation from the presumed central sleep apneas, and it seems to help rather than worsen! And it's not like I instantly gained weight after my surgery or last summer when it went completely nuts—both times, my symptoms went from 0 to 100 literally overnight.

(Just in case anyone immediately recognizes these symptoms as something rare but specific: I started having problems with choking on everything I tried to swallow around the exact same time this kicked from "very occasional" to "all night every night." I didn't sleep more than 2 hours at a time for about 6 weeks last summer because every time I'd start to doze, I'd 100% forget how to breathe and wake up a few minutes later in a panic. When I did get to sleep, I'd wake up just under 2 hours later and gulp down air like I just surfaced from a deep dive. My doctor finally put me on temazepam 15mg as needed, and it really helps! I am relieved to see I didn't have any centrals while taking it, at least.)

[Jas_williams]

It’s all a process you won’t get a Bipap or some other high end machine until you have uses an APAP that’s the way these things work. Get tha APAP prescribed use the machine and see how it goes, if it doesn’t work move on to the next one.

[radler]

It’s all a process you won’t get a Bipap or some other high end machine until you have uses an APAP that’s the way these things work. Get tha APAP prescribed use the machine and see how it goes, if it doesn’t work move on to the next one.

That might be true for obstructive sleep apnea, but I don’t think it’s true for the kind of issues I’m having.

[ChicagoGranny]

That might be true for obstructive sleep apnea, but I don’t think it’s true for the kind of issues I’m having.

Can you post again on why you think you have central sleep apnea instead of obstructive sleep apnea?

[radler]

That might be true for obstructive sleep apnea, but I don’t think it’s true for the kind of issues I’m having.

Can you post again on why you think you have central sleep apnea instead of obstructive sleep apnea?

Sure. My PCP thinks they are central rather than obstructive because they happen about equally in all positions but a little worse on my stomach, they started when I was a baby and worsened very suddenly after anesthesia or during severe episodes of malnutrition/electrolyte imbalance(?), and, maybe most importantly, my family members who have witnessed me sleep say I don’t snore at all or struggle to breathe/choke when trying. I just stop breathing/trying to breathe, period. My chest/body completely stops moving until I wake up and inhale again.

I don’t know if this is important, but I also forget to breathe fairly frequently throughout the day. If I get distracted doing things other than breathing or (or talking, exercising, etc.), which is most of the time obviously, I breathe very shallowly or realize I forgot to breathe at all. I know I have ADHD, but forgetting to breathe is pretty next level! I am usually upright and alert for these activities, so I don’t think it would be obstructive, right?

[ChicagoGranny]

I also forget to breathe fairly frequently throughout the day.

This is common in most people whether they have sleep apnea or not.

My PCP thinks they are central rather than obstructive because they happen about equally in all positions but a little worse on my stomach, they started when I was a baby and worsened very suddenly after anesthesia or during severe episodes of malnutrition/electrolyte imbalance(?), and, maybe most importantly, my family members who have witnessed me sleep say I don’t snore at all or struggle to breathe/choke when trying. I just stop breathing/trying to breathe, period. My chest/body completely stops moving until I wake up and inhale again.

You may have central sleep apnea, but the evidence doesn't seem conclusive.

I would go this route ---->

It’s all a process you won’t get a Bipap or some other high end machine until you have uses an APAP that’s the way these things work. Get tha APAP prescribed use the machine and see how it goes, if it doesn’t work move on to the next one.

[chunkyfrog]

That seems to be the best course of action.
Do that--and please let us know how it goes. (In THIS thread)

[radler]

I also forget to breathe fairly frequently throughout the day.

This is common in most people whether they have sleep apnea or not.

My PCP thinks they are central rather than obstructive because they happen about equally in all positions but a little worse on my stomach, they started when I was a baby and worsened very suddenly after anesthesia or during severe episodes of malnutrition/electrolyte imbalance(?), and, maybe most importantly, my family members who have witnessed me sleep say I don’t snore at all or struggle to breathe/choke when trying. I just stop breathing/trying to breathe, period. My chest/body completely stops moving until I wake up and inhale again.

You may have central sleep apnea, but the evidence doesn't seem conclusive.

I would go this route ---->

It’s all a process you won’t get a Bipap or some other high end machine until you have uses an APAP that’s the way these things work. Get tha APAP prescribed use the machine and see how it goes, if it doesn’t work move on to the next one.

Strange. Everyone I’ve ever mentioned it to has acted like I’m insane. I can’t find anything about that being normal. Do you happen to have a source for that? One person says she gets like that a little when low on b vitamins but not otherwise.

It doesn’t sound like the BIPAP will harm obstructive sleep apnea if that’s what it is. I’ll probably get the APAP through insurance but get the bilevel for the next few weeks until then because I think that’s probably closer to what I need. Worst case scenario, I have a backup machine, or I already have the bilevel “failure” documented and ready to move on to VAPS or ASV.