Hypopnea and Oral Appliances

[Diagnosed and Confused]

Hi,

I am a confused newbie and hopefully I am posting this in the correct spot. I have reviewed the definitions and stickies at the beginning of this post. After a sleep study I have been diagnosed with mild sleep apnea - hypopnea actually.

My partner complained my snoring is so loud sleep is difficult. Mentioned this to my doctor and he suggested a sleep study/sleep doctor. I found a very respected one but live in a rural area where sleep doctors are not plentiful. She examined me did a history etc and I went for my sleep study. I had a heck of a time falling asleep. Today I reviewed the results with the sleep doctor and I thought I would get down in writing all that I remember.

She brought the study up on the computer and was also looking at the file with the written report. She told me that there was a mistake in the written report - the report should have said that I have mild sleep apnea, but the report incorrectly said severe due to a math error. She then crossed out the word severe and replaced it with the word mild on the written report.

She showed me many views onscreen of the data which looked like a NASDAQ report but all the graphs of 2 minute periods etc were pretty much straight across. She said I had on average 66 brain arousals/hour and 35 respiratory arousals/hour. She said the results were much worse on my back (39), and a bit better on my side (31). In the sleep study I never went in REM sleep, probably because I was so uncomfortable. She told me I probably have not had a good night's sleep in a very long time, which I agree with. She felt this could lead to bigger problems if not addressed. Many obstructive sleep apnea patients (of hers) have 60% oxygen going to their brain during an event or arousal. She said I have a high oxygen number -- never lower than 96% and often 98% which is why I am mild and don't really have severe sleep apnea.

I then asked "And this is mild apnea?". She said "Yes, according to Medicare and non-Medicare definitions". I said "What about your definitions?" She said she agrees with the written definitions. She then told me that I actually have hypopnea. I then asked how my problem could be corrected. She said that an oral appliance, made from a dental impression with a dentist who specializes in this would be best since it's portable, requires no electricity etc. My health insurance, not dental insurance, would be used in this case. I would probably have to pay half. Then I would need to have a sleep study to confirm that it's working. I currently have a mouth guard due to teeth grinding (made for my mouth) and that would go away and be replaced by this contraption which would also address teeth grinding and somehow also keep my bottom jaw pushed forward so that I don't have arousals. In the event I hate this mouth contraption (she suggests trying it for at least 2 weeks), she suggests a CPAP machine, but feels my sinus passages are clear enough that an over the mouth mask is not required. I would have a mask over the nose only, which can still allow for heated humidity. If I wanted a CPAP machine, I would have to have another sleep study with the mask on to ensure that it would address the problem. I mentioned this forum and Sleepyhead software and she thought that was fine and I must be a techie (I am) but a doctor should at least do the first evaluation and adjustment with a CPAP.

That's when she dropped the bomb that she was leaving the area to move 3 hours away to be closer to her son. She did give me a dentist located in the area who specializes in sleep dentistry.

I'm inclined to write a letter to my doctor asking her to correct the diagnosis in the report and send the corrected report to me and my family doctor and try the sleep dentist. I don't see much on this forum regarding the oral appliance as a solution.

While I'm awaiting the written report I wondered if anyone could comment on my diagnosis and recommended treatment. Despite reading on many sites about the difference between hypopnea and apnea I'm still fuzzy on the big picture. A lot was thrown at me today and any information or suggestions at this early stage in my treatment would be much appreciated. Once I get the report I could answer specific questions (hopefully).

Thanks so much for taking the time to read my post.
Karen

[kaiasgram]

Hi Karen -- You definitely need a copy of your sleep study report! Your doctor's reasoning and explanations are hard (for me at least) to follow and make complete sense of.

Did you have 66 arousals and 35 respiratory events (not "arousals") per hour? And is the doc saying that all of those events were hypopneas and not obstructive apneas?

An obstructive apnea is a complete cessation of breathing for at least 10 seconds. A hypopnea is a partial obstruction of air flow, and there are a couple of different criteria for scoring a hypopnea -- I don't have immediate access to the info distinguishing them but someone will come along soon to clarify.

Did the doctor tell you the exact diagnosis? "Hypopnea" is not a diagnosis as far as I know. I'm hoping mollete or one of our other seasoned members can speak to this.

I'm actually wondering about the "math error" and the changing from severe to mild -- is anyone else wondering? You had a lot of events and the diagnostic qualifiers "severe" "moderate" and "mild" are based on frequency of respiratory events, not on oxygen levels. "Severe" is an AHI (Apnea Hypopnea Index = average per hour) of greater than 30. So if you really did have 35 hypopneas on average per hour, I don't understand why the doctor is using the diagnostic qualifier of "mild."

As for a dental appliance being this doctor's first choice, I don't know what to think, in part because it's unclear at this point what was actually going on in your sleep study. There are discussions of dental appliances on this forum, but because it's a CPAP forum you're probably going to want to look at additional resources if you decide to go that route. Did an ENT or dentist evaluate you as a good candidate for a dental appliance? Is the doctor recommending a dental appliance over CPAP because she is interpreting your condition as mild? You are not alone in your confusion!

More questions than answers coming at you, sorry 'bout that! Welcome to the forum, we'll do our best to help you figure all this out. Getting a copy of your sleep study (both the original and the "corrected" version!) will be really important. Even better if you are able/willing to post a copy of the report here (hiding your identifying info) so we can see the actual data.

[49er]

Hi Diagnosed and Confused,

I agree with Kaisgram about you needing a copy of your sleep study. You also might want to review this study that shows the success rate of dental appliances at various AHIs. As you can see, the rates go down considerably in most of the severe ranges which would make your doctor's recommendation extremely puzzling if the number of events per hour, 66 is accurate since that is considered to be severe.

https://advancedbrainmonitoring.app.box ... 7pjn8s11y4

Also, since cpap therapy is considered the gold standard for all severity ranges, can you ask your doctor why this isn't being offered to you as a first option, particularly since you didn't express any hesitation about this?

Best of luck.

49er

[kaiasgram]

49er -- 66 is the number the OP refers to as "brain arousals." She mentions 35 "respiratory arousals" which I thought must have meant respiratory events (i.e., 35 was the number of hypopneas), but maybe 35 is RERAs? The whole thing is quite puzzling. Assuming 35 is her AHI, it's severe and like you commented, it would make me wonder why the doctor would be recommending the dental appliance as a first approach. It will be very interesting if we get to see the actual report. It worries me to hear about the doctor "correcting" the sleep study report because if indeed her AHI was 35 then the mistake is not a math mistake in her sleep study report, it's a mistake by the doctor!

Karen, hang in there with us! I think a lot of us will be very interested in what the real deal is and also interested in helping you as you pursue your treatment options.

[49er]

49er -- 66 is the number the OP refers to as "brain arousals." She mentions 35 "respiratory arousals" which I thought must have meant respiratory events (i.e., 35 was the number of hypopneas), but maybe 35 is RERAs? The whole thing is quite puzzling. Assuming 35 is her AHI, it's severe and like you, would make me wonder why the doctor would be recommending the dental appliance as a first approach. It will be very interesting if we get to see the actual report. It worries me to hear about the doctor "correcting" the sleep study report because if indeed her AHI was 35 then the mistake is not a math mistake in her sleep study report, it's a mistake by the doctor!

Karen, hang in there with us! I think a lot of us will be very interested in what the real deal is and also interested in helping you as you pursue your treatment options.

Thanks for the correction Kaisgram.

Interestingly, in the link to the study I provided, an AHI of 35, is one of the few severe numbers that actually has a higher than normal success rate for that range, which is 65% for an adjustable appliance. Maybe the doctor has been reading the same study.

All sarcasm aside, this is one of the strangest things I have heard a doctor do and would love to hear what the explanation is.

49er

[Julie]

Hi - that is definitely one strange interpretation of things and I would not undertake any dental device 'answer' until you know more (from the report - not just the summary, but full one). She may be a 'sleep' doctor, but I wonder about it... what is her actual specialty - pulmonologist? Neurologist? Something else?

[kfetty]

Hi all,

Somehow the first time I posted I wasn't logged in so sorry for the confusion. You have all given me the information I need without really saying it - get another doctor (which I have to do in any case) and start all over with understanding my situation. The first thing I'm going to do is get a copy of the sleep study (corrected). I don't feel good about any of this. I did have an awful sleep study. Lights out at 11 pm, felt I fell asleep at 5:30 am and was released at 6:00 am. In fact I snored and fell asleep at 2 am. But it took me 4 or 5 days to fully recover from the study so I am not looking forward to a repeat. Hopefully the results of the one I took are valid and can be interpreted by another doctor. I'm not asking this kind group to give me a diagnosis and treatment options but it's obvious I have to find another sleep doctor. I'm 2 hours north of NYC and 1 hour south of Albany. I can find someone in Albany. Thank you. I did a lot of lurking on this site before the sleep study and through this whole lengthy journey. I will keep you posted and thank you.

Karen
Hudson, NY

[Super Iridium]

Like others offering advice here, I'm no doctor, but I was diagnosed, like you, with mild to moderate apnea and then given a CPAP machine by my doctor.

And let me say, HOLY COW, if you've gone 10 or more years without a decent night's sleep and then get a chance to really, decently, deeply sleep for one night, you would know what that CPAP machine means to me now.

Which is a round-about way of getting to this point -- is there some way that you can give the CPAP therapy a try before you go with the dental appliance thing? I've never heard of anyone getting the kind of relief from a dental appliance that I've had with the CPAP, so I'd never trade one for the other. Yes, the CPAP machine is a bit of a pain to use, but the results are amazing.

[kfetty]

Hi Again,

I'm a techie. I belong to forums regarding electric cars, computers (macs), solar and phones. I never buy anything without doing a lot of research and checking user reviews. Real people, real reviews. When I first realized I had this problem (never heard of the word apnea until May of this year when I happened to mention to my family doctor that I snore loudly) I was scared and knew I knew nothing about this subject. I immediately found this forum and learned so much. Calming down, I then found a doctor who posted a video (45 minutes long on the subject -- this video was brilliant and contained so much information - meant for medical practitioners). I had a 6 week wait to see this wonderful doctor. Then another 6 week wait to have the sleep study. Then a 4 week wait to get the results of the sleep study. Maybe the doctor is a great researcher and presenter but falls short on administration. Not sure. The first time I saw her I got a 3 page document listing everything we spoke about. Yesterday I got nada. No report, all that confusion etc. She's only in the office locally once per week, and now only until the end of October. My family doctor did not receive the copy of the 9/3/13 test I requested the day of the sleep study so I may have to obtain it from the doctor's office. I called and spoke to her assistant and shocking though it may seem, I may have to drive 45 minutes each way and pick up this report next Tuesday. Totally unacceptable. She's moving her practice so perhaps things are chaotic for her. I don't wait to waste time regretting the time I've wasted or whether or not this doctor is competent.

I really have no idea now what the sleep study results were since I've learned from this forum that much of the information I fed back to you is contradictory and confusing at best. I am not going to the dentist (although she has an excellent reputation) to get an oral appliance. I will wait for the hard copy of the report and come back and ask this forum where do I start. Of course I will also read it thoroughly and pass a copy to my family doctor.

I'm researching a new doctor and think I found one - in Albany. I'm hoping with the study in hand I can get an appointment quickly and see what he will recommend. Fresh start.

Sometimes when you wait so long for an appointment you think it's because the doctor is so great. In this case I now realize it was because she's only in town once per week so there were limited appointments.

More to come -- when I get the study, and without knowing anything, yes, I need a good night's sleep and a CPAP machine seems the best course. You guys are absolutely great!

Thanks again,
Karen

[kfetty]

Hi again,

My doctor called me at home (9 pm) to confirm that the report I'll be picking up has only one change - one word - from severe to mild. She went on to say "just to clarify: you do have severe sleep apnea - according to the ASXX (I only got the first 2 letters). However, I changed it to mild due to the Medicare definitions". I know -- this makes no sense. I'm 64 years old -- I reminded her yesterday that I'm not in Medicare.

I will PDF the entire report and upload it here as soon as I can get my hands on it.

Thanks again,
Karen

[kaiasgram]

Hi again,

My doctor called me at home (9 pm) to confirm that the report I'll be picking up has only one change - one word - from severe to mild. She went on to say "just to clarify: you do have severe sleep apnea - according to the ASXX (I only got the first 2 letters). However, I changed it to mild due to the Medicare definitions". I know -- this makes no sense. I'm 64 years old -- I reminded her yesterday that I'm not in Medicare.

I will PDF the entire report and upload it here as soon as I can get my hands on it.

Thanks again,
Karen

Karen, I think many of us are shaking our heads and thinking WTF? No wonder you were confused! The whole thing is bizarre (including the recommendation of a dental appliance for severe OSA) and I am so glad you found this forum!

[sparkles]

I would call back and say you want to understand what her reasons are for the change.

I wonder if there's some miscommunication going on here.

I further wonder if her upcoming move has anything to do with the change, or what it is about Medicare's criteria that are having an influence on the diagnosis.

[kaiasgram]

I further wonder... what it is about Medicare's criteria that are having an influence on the diagnosis.

I thought this was strange too. Medicare has criteria for covering (or denying) treatment for sleep apnea, but I didn't think a medical diagnosis could be "defined" by Medicare. So even beyond the fact that Karen (the OP) is not even in the Medicare population yet , this doctor changing the actual diagnosis based on Medicare guidelines for coverage makes no sense to me.

[kfetty]

Hi All,

I have the report, a copy all redacted of personal information, but cannot post attachments! Maybe someone can clue me in. Anyways, the report was revised to "mild to moderate" with a footnote and dated today so it's all official. The numbers and graphs are attached. The sleep lab (which is headed up by my doctor who is leaving) clearly says I should go the CPAP route. However, in person I believe the doctor came up with the oral appliance recommendation because I told her that it took me a week to recover from the sleep lab experience. I can go into that but I really really hope I don't have to do another. Since a CPAP would mean trying one out in the lab and she probably didn't want me to go through that. As to the errors and miscommunications I'm going to chalk that up to her leaving and the chaos that brought on.

In any case I want to go the CPAP route so no need to discuss dental appliances. Here are my questions:

1) To get a CPAP is a prescription required?
2) If yes, I could get a prescription from my doctor but then I'd have to be scheduled quickly for a CPAP sleep lab test. I'm inclined to move on to another doctor, and at this point the doctor and sleep lab are probably happy I feel that way.
3) After the group has reviewed my test results, how difficult will it be to schedule a new doctor, present the results and go the new doctor route? I'm thinking the new doctor might want to run me through their sleep lab.
4) She did recommend another doctor who is close by. Since they are colleagues and refer to each other maybe I could go to her and ask for a prescription. But avoid a sleep lab test? Is that at all possible?
4) At the risk of getting arrested by the insurance police, I'd rather buy my own and have you guys help me figure it out. Crazy and throwing $ away, right?

Thanks -- let me know if I have to start typing out the whole report here. Or ask me to quote statistics. I remember she told me the report was really two reports - one for Medicare and one for AASM. I believe I have only one version in my hands -- the AASM. I was 63 at the time of the test and had a birthday afterwards and turned 64.

Thanks everyone!
Karen (feeling a lot better with report in hand)

[kaiasgram]

1) To get a CPAP is a prescription required?
2) If yes, I could get a prescription from my doctor but then I'd have to be scheduled quickly for a CPAP sleep lab test. I'm inclined to move on to another doctor, and at this point the doctor and sleep lab are probably happy I feel that way.
3) After the group has reviewed my test results, how difficult will it be to schedule a new doctor, present the results and go the new doctor route? I'm thinking the new doctor might want to run me through their sleep lab.
4) She did recommend another doctor who is close by. Since they are colleagues and refer to each other maybe I could go to her and ask for a prescription. But avoid a sleep lab test? Is that at all possible?
4) At the risk of getting arrested by the insurance police, I'd rather buy my own and have you guys help me figure it out. Crazy and throwing $ away, right?

1) Yes you need a prescription to get your CPAP machine
2, 3 and 4 ) Shouldn't be a problem to bring your sleep study report to a new doctor and take it from there. Some docs will prescribe an APAP machine and let you titrate at home and not necessarily have you come back to the sleep lab for the titration. Especially if your sleep study indicated garden variety obstructive sleep apnea.
5) You always have the right to buy on your own (you'd still need a prescription), you're never obligated to use your insurance. You'll want to compare the cost to you of going through your insurance vs. buying on your own -- sometimes it's less expensive to do it yourself, but worth checking this out.

You don't have to type out the report. To post your report: Take a screenshot of the report and upload it to a site like Photobucket. Once uploaded, click on your image and you'll be shown an Image code. Copy the image code and paste it right into a post here -- it will just be text, but if you click on Preview you should see the actual image. Then you'll know that we'll be able to see it too.

Looking forward to seeing this crazy report!