Hypopnea and Oral Appliances

[kfetty]

Hi,

Since I already have a website I thought it quicker to upload the document there. Here is the link.

http://www.karenandpat.com/uploads/1/2/ ... eeplab.pdf

Thanks for the answers to my questions. The home titration is definitely a great way to go. My doctor said since I have pretty good nasal passages (not stuffy) that an over the nose only CPAP is probably a good idea because the over the nose/mouth is harder to adjust to. Does that make sense?

I confess I'm getting a little worried that the report I have may only be the version she wanted me to get but I'll not obsess about that right now. First, I'll wait to see what your comments and thoughts are on the report as is.

Thanks again and happy reading,
Karen

[SleepingUgly]

OK, here's my best shot at this:

First, you need to understand that there are two ways hypopneas can be scored. The AASM Recommended scoring, which is what they used in your study, requires an associated oxygen desaturation in order to score it as a hypopnea. The AASM Alternative scoring allows for scoring a hypopnea if it's associated with an arousal. (See this article for reference and the impact on the overall AHI: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2635578/)

The AHI = apneas + hypopneas per hour of sleep

Respiratory Effort Related Arousals (RERAs) are not scored in the AHI, but are scored in the RDI. So an RDI = apneas + hypopneas + RERAs.

You had 1 hypopnea associated with a desaturation all night. So your AHI is insignificant. However, you had 32.8 RERAs/hour yielding an RDI of 32.8.

As I said, they used the AASM Recommended criteria, which is what Medicare uses. This means any "hypopneas" you had that were associated with arousals, but not desaturations, weren't technically scored as hypopneas. However, what I wonder is whether they were couched as "RERAs". If they were really hypopneas, you have OSA. If they were really RERAs, you have Upper Airway Resistance Syndrome (UARS). To add to the weirdness, at one point she says that you had an RDI of 32.8 and AASM AHI of 34/hour. No, you had an AASM Recommended AHI of .3 or whatever. Is she just trying to get your diagnosis covered? Someone who knows more about insurance than I do would have to answer whether UARS is not covered, and that's why she's trying to present your UARS as if it were OSA...?

Anyway, I am impressed that she mentioned CAPs and alpha activity during NREM, only in so far as that shows some reading of the literature (even if I have no idea what the implications are).

You have leg "twitches" prior to sleep and first half of the night, later associated with snoring or respiratory events. In other words, she's not saying these are periodic limb movements and may just be muscle contractions associated with respiratory effort. But you must have endorsed some Restless Leg Syndrome symptoms (RLS) on a questionnaire. This might improve with treatment of your respiratory events.

Your oxygen stayed at 92% or above all night (which is good).

In summary, I don't know why she was presenting it as if you have OSA, as it seems like you have UARS, except that maybe she recognizes that they should be using the Alternative scoring criteria of hypopneas and that you would meet that criteria for OSA. It really doesn't matter if you have OSA or UARS, as the treatment is the same. Either way, I agree that you have mild to moderate OSA (closer to mild that night, but we didn't see you in REM), and you may even have UARS and not OSA (again, who cares). I also see why she recommended a dental device--your oxygen is good, you don't have severe apnea, so why not?

[SleepingUgly]

My recommendation: If you aren't going back to that lab, you should go to one that uses the AASM Alternative scoring of hypopneas AND scores RERAs. You only have to read the article that I sent you a link to in order to recognize that if you had gone to a lab that uses the AASM Recommended criteria, like theirs does, and does not score RERAs (or disguise the hypopneas as RERAs), you would have ended up with an AHI of .3 and been told that you have no sleep disordered breathing! You would go on your not-so-merry way with sleepiness, snoring, etc. but think you have nothing here to treat. You must go to a lab, whether for a study or titration, that uses the Alternative scoring and scores RERAs to be sure that they are going to capture your SDB.

I hope any of this makes sense!

[kfetty]

Hi,

I was afraid of this -- I picked up the report with all the Medicare scorings. I guess since I just turned 64 she's getting me ready for Medicare? Anyways perhaps I should call her office and insist that I get both reports and perhaps even pick up a disk with the full report. She showed me on screen 2 seconds at a time so there was a lot of data obviously.

I can call the doctor's office I was planning to use and I know he uses St. Peter's Sleep Lab in Albany, NY and ask about the methodology etc. But again, I had a heck of time with that sleep study (mainly the wires, nose feeds etc) and trying to sleep not on my schedule.

Thanks for your advice and interesting that even with the report it's not a clear picture....

Appreciating all your input,
Karen

[SleepingUgly]

If you care whether you have OSA or UARS (I wouldn't, personally), and if the doc hasn't moved away yet, perhaps you can get her on the phone and talk to her. I would ask her, "I only had 1 hypopnea, scoring the AASM Recommended way. All my events were RERAs. So why do you say that I have OSA and not UARS?" After she answers, you might follow up with, "What do you do with 'hypopneas' that are associated only with arousals and not desaturations? Do these end up being scored as RERAs?"

Since you had so much trouble sleeping, if you're going to have a titration in the lab (and I would recommend it--more on that in a sec), perhaps a sleep aid could be prescribed for that night? It's a common practice, and you'd really like them to capture you in REM. The reasons I'd say have the titration in the lab are many, but include that you'd like to have them keep an eye on those leg movements as they titrate you on CPAP. Ideally you'd want to see them disappear as they dial in the right CPAP setting.

[kfetty]

Hi,

I'm inclined to call the new doctor and schedule a second opinion and figure out next steps. I can always ask the old doctor questions later if I think that would help. I'm going to ask the new doctor's staff if I should pick up a disk with all the original information from the sleep study. That way he can draw his own conclusions instead of relying on the written report.

I woke up today after a 10 hour sleep. I was not refreshed and rested. It's obvious I have to move forward with CPAP but I want to work with a medical team I can trust and rely on. That's my priority.

I'm keeping all of your suggestions and questions at the ready for the next stage and report back when I know more. I'm on a journey and thank you for all the help. It makes a huge difference in my outlook.

Best,
Karen

[kfetty]

Hi,

I made an appointment with a new doctor on Monday -- again, another 5-week wait to go to Albany on November 1st. I checked with a well known doctor in NYC and the wait was until January, even later. The Albany staff said I would most likely be set up for a CPAP Titration two weeks after the appointment and get equipment another two weeks later, so I should have equipment in early December.

I called my original doctor's office and requested and received in the mail the other test results - at 3% desaturation and the results look very different to me. RERA Total Number of Events = 0, while HYPOPNEA = 97. As the written report states in the 2nd sentence " .... CMS AHI is 0.3 events/hour and the AASM AHI is 34 events/hr." I would like to understand what desaturation is and how they could possibly score so differently.

One number that is the same on both reports is sleep efficiency -- 42%. Even correcting for the troubled night's sleep due to all the wires and discomfort, that is a bad result.

I have also read that oral appliances plus CPAP are often prescribed for the best outcome.

Hopefully by the end of the year I will be sleeping better.

Thanks,
Karen

[kfetty]

Hi again,

I met with my new doctor on Friday and brought the copy of my sleep study with me. The medicare and non-medicare scored reports were included. It was a lot of information and the doctor did a thorough ENT examination of my throat and sinuses - no obstructions. He spent 1 hour 20 minutes with me and explained a great deal of things in easy to understand examples. For instance, he said the number of RERA was like someone pricking me with a hat pin every minute which doesn't aid sleep. He set up a phone call for today to discuss his recommendations and we just had that call. Here are his recommendations:

1) Lose weight (I have lost 7 pounds since the study of 9/3/13 and potentially could lose another 10 over the next few months but I am not convinced this will help me get better sleep)
2) Retake the sleep study as the results of the first test are not conclusive (he hesitated saying this as he knows I had a tough time with the first study. I suspect that he has little faith in the original sleep study)
3) Titration sleep study and see if CPAP helps (this is of course not a true sleep study)
4) Dental appliance (I have dropped this idea due to my own research and he does not recommend it)

I have agreed to retake the sleep study in his lab which is accredited by NYS's sleep association. The other lab was not as highly regarded but this one is further away. Since I just turned 64 he reminded me that if I were a year older I would get zero reimbursement for CPAP due to the mild apnea diagnosis under Medicare guidelines. I told him in his office and again on the phone today that I would like insurance considerations to be the last thing we discuss since I consider them arbitrary. For instance, Medicare removed RERA's from consideration in the diagnosis of sleep apnea in 2005.

I must say I'm a little deflated. The second doctor though much more caring and easier to talk to does not feel that my case is a simple one which is likely why he wants to start all over again. My spouse informs me that I have been sleeping much better in the last few months since I am adhering to strict sleep hygiene principles such as no electronics in the bedroom, no emotional discussions or computer emails after 9 pm and just a general quieting down in the evening.

My question for the group, if anyone is still interested and listening is, did I find the right doctor? I honestly think he would have preferred that I said in the phone call we just had that I would continue the aggressive weight loss program coupled with ample exercise and check back in six months.

Thanks,
Karen

[kfetty]

Hi,

This matter or discussion is now resolved and closed. I have decided not to pursue CPAP, an oral appliance or another sleep study. Since May 2013 when I discovered the loud snoring, I have taken many steps in sleep hygiene including no electronic devices in the bedroom, no emotional discussions or computer use after 9 pm and a cessation of drinking tea after 9 pm. That helped a lot, but just as important was losing 7 pounds in the last two months (which I will continue to pursue), exercising regularly (walking 3-4 miles a day plus yoga several times per week). I'm feeling better and my sleeping partner has reported that I snore very little and much, much softer. I feel better rested upon waking. I'm starting a journal to track how restful my sleep is upon waking so that I can see if any patterns emerge.

Although my doctor gave me the choice to pursue CPAP with a titration study I realized after sleeping on this (no pun intended) that my heart is not in it. The sleep test I had may have been problematic but I certainly don't feel that I have a terrible case of obstructive sleep apnea. The reason the doctor wanted a retest was that the test was so inconclusive.

I always have the option later to return to this issue, but for now, I'm dropping it. Thanks to all for your advice and support.

Karen

[Rustsmith]

Karen, I went through testing about the same time you did and have VERY similar scores, in apneas, hypopneas, RERAs and PLM. However, I was very fortunate in my selection of labs in that I was specifically tested for UARS. This involved a tube in my nose and throat (which was even more uncomfortable than the wires).

I was called back for a titration study and placed on CPAP. It may be helping some, but it is too early to tell.

However, as a result of the PLMs (and the fact that I was bouncing my legs during every examination), they started treating me for Restless Leg Syndrome (now properly called Willis-Ekbom Disease). The treatment for WED/RLS has allowed me to get to sleep normally and has really changed my life.

Since you indicate that you are a techie, I strongly recommend that you investigate WED/RLS and see if that has been contributing to your problems. From the information that you will find, you should have a pretty good idea whether WED describes you or not. If it does, you need to search out a neurologist who is familiar with treating it since not all doctors are truly up to speed with WED.

[kfetty]

Hi,

Thanks for writing. I feel I don't really have RLS -- I was extremely twitchy that night. The wires drove me crazy especially in my nose. The room was very dry and cold and the blankets weren't warm. It was not my regular bed -- which I have set up completely to my needs and tastes. My spouse agrees that I don't seem to twitch although my test indicates otherwise. If I slept every night at 42% efficiency I would be running to every doctor in the country. My guess is that it's more like 98%. Also, as I mentioned early on, my high oxygen level is a good thing - never dropped below 92% but most often was much higher.

Time will tell and I will certainly be watching and journaling, but for now, RLS is not an issue -- and since I live with someone who was plagued with that for many years, we know a little about the subject. She rid herself completely of it by taking Life Extension Ribose powder -- she takes it several times a day and is RLS free for the first time in many years.

Good luck,
Karen