Medical mediator needed

[Mr Concerned]

[
So if the device tells you that your RDI is 10 or even 20.... or even 30....

Then you have to understand that your actual AHI is probably some where between 5 and 15 which is perfectly normal.

Last time I checked with my sleep doc, an AHI between 5 and 15 on a PSG is NOT "perfectly normal". An AHI between 5 and 15 on a PSG is "mild apnea" and CPAP therapy is usually offered to the patient if s/he is symptomatic. If the AHI on a PSG is close to 15, the patient will usually be told their apnea is mild-to-moderate and a CPAP trial will be pushed pretty heavy regardless of whether the person has daytime symptoms.

Decisions on whether or not to place a patient on CPAP are hardly ever determined by the AHI. If a patient performs a six hour sleep study, but only sleeps for 2 of those hours... goes into REM for the final hour and has 10 obstructive events...

His AHI will be 20/hour.

These things can get confusing when a patient reads their own report and sees that they had 20 events per hour but only 10 events total. At it's core, AHI is only a means of statistics. It is a way for medical professionals to oversimplify data to the point where a patient can accept it as understandable. The actual thought process that goes behind the diagnosis in this example however is the fact that the sleep physician realized the patient was having hypopneas in REM and although they did not get very much TST (Total sleep time) in this study, he has seen enough to understand that the patient will have longer, more frequent REM stages in the future that will be plagued with obstructive events. A course that can only worsen (Worsen? Is that even a word?) as the patient gains weight.

Also understand that Centrals calculate into AHI. No sleep physician will prescribe CPAP for a patient suffering from a paralyzed thoracic diaphragm. And yet that patient's AHI could be 100% centrals or 100% obstructive. But yes I have seen these charts that outline expected AHIs. Resmed papers the country with them. AHI = 0–5. Normal range. AHI = 5–15 Mild sleep apnea. AHI = 15–30 Moderate sleep apnea.

You will not find that in the Atlas of sleep medicine or P&P or the R and K manual. That chart is meant for public consumption. It is there to help sleep physicians consult with their patients. The reality is that no one will ever have an AHI of zero. It is physically impossible. Breathing is suspended during every single transition state and during REM the respiratory system completely disconnects from the brain and runs on autopilot for the duration.

[jnk]

In support of Robysue's points:

According to the Centers for Medicare & Medicaid Services criteria for the positive diagnosis and treatment of obstructive sleep apnea, a positive test for OSA is established if either of the following criteria using the AHI or the RDI is met:
•AHI or RDI greater than or equal to 15 events per hour, or
•AHI or RDI greater than or equal to 5 and less than or equal to 14 events per hour with documented symptoms of excessive daytime sleepiness (EDS); impaired cognition; mood disorders; insomnia; or documented hypertension, ischemic heart disease, or history of stroke

The AASM has developed its own criteria, as listed in the International Classification of Sleep Disorders: Diagnostic and Coding Manual, Second Edition. At least 1 of the following criteria must apply for OSA to be diagnosed:
•The patient reports daytime sleepiness, unrefreshing sleep, fatigue, insomnia, and/or unintentional sleep episodes during wakefulness. The patient awakens with breath holding, gasping, or choking. The patient’s bed partner reports loud snoring, breathing interruptions, or both during the patient’s sleep.
•Polysomnography (PSG) shows more than 5 scoreable respiratory events (eg, apneas, hypopneas, RERAs) per hour of sleep and/or evidence of respiratory effort during all or a portion of each respiratory event.
•PSG shows more than 15 scorable respiratory events (eg, apneas, hypopneas, RERAs) per hour of sleep and/or evidence of respiratory effort during all or a portion of each respiratory event.
•Another current sleep disorder, medical or neurologic disorder, medication use, or substance use does not better account for the patient’s condition.

--http://emedicine.medscape.com/article/2 ... fferential

[Mr Concerned]

In support of Robysue's points:

According to the Centers for Medicare & Medicaid Services criteria for the positive diagnosis and treatment of obstructive sleep apnea, a positive test for OSA is established if either of the following criteria using the AHI or the RDI is met:
•AHI or RDI greater than or equal to 15 events per hour, or
•AHI or RDI greater than or equal to 5 and less than or equal to 14 events per hour with documented symptoms of excessive daytime sleepiness (EDS); impaired cognition; mood disorders; insomnia; or documented hypertension, ischemic heart disease, or history of stroke

The AASM has developed its own criteria, as listed in the International Classification of Sleep Disorders: Diagnostic and Coding Manual, Second Edition. At least 1 of the following criteria must apply for OSA to be diagnosed:
•The patient reports daytime sleepiness, unrefreshing sleep, fatigue, insomnia, and/or unintentional sleep episodes during wakefulness. The patient awakens with breath holding, gasping, or choking. The patient’s bed partner reports loud snoring, breathing interruptions, or both during the patient’s sleep.
•Polysomnography (PSG) shows more than 5 scoreable respiratory events (eg, apneas, hypopneas, RERAs) per hour of sleep and/or evidence of respiratory effort during all or a portion of each respiratory event.
•PSG shows more than 15 scorable respiratory events (eg, apneas, hypopneas, RERAs) per hour of sleep and/or evidence of respiratory effort during all or a portion of each respiratory event.
•Another current sleep disorder, medical or neurologic disorder, medication use, or substance use does not better account for the patient’s condition.

--http://emedicine.medscape.com/article/2 ... fferential

Excellent find. Can you also list how many times that has been revised in the last ten years?

You know it's funny that you bring up the AASM because it is just this past year that they changed their hypopnea rule to a 10 second duration plus arousal. They do not even require a desaturation anymore. Everyone is up in arms. It's like saying that pluto is not a planet. I don't know what they are going to do at the next APSS meeting. They might get lynched.

Coincidentally, I don't mean to nitpick but it is redundant to list both medicare and the AASM. Medicare will not support a PSG that was run in a non AASM accredited lab as of 2008. Also they require all techs running the PSG to be BRPT certified. So really you should just refer to the AASM as they are the ones effectively setting the standards for medicare. (Until such time as medicare decides to change that)

[robysue]

You know it's funny that you bring up the AASM because it is just this past year that they changed their hypopnea rule to a 10 second duration plus arousal. They do not even require a desaturation anymore. Everyone is up in arms. It's like saying that pluto is not a planet. I don't know what they are going to do at the next APSS meeting. They might get lynched.

That definition of hypopnea that requires an arousal, but not a O2 desat has been around for quite some time. My original diagnosis of moderate OSA was based on a sleep test in 2010 where I had an OAI = 3.3, but I had an "HI" = 20.0 where ALL the H's scored were "hypopneas with arousal". There was not a single O2 desat scored during the night. In 2010, those hyponeas with arousal were already considered AASM hypopneas if the lab chose to score H's under the "Alternative Standard" rather than the "Recommended Standard."

Coincidentally, I don't mean to nitpick but it is redundant to list both medicare and the AASM. Medicare will not support a PSG that was run in a non AASM accredited lab as of 2008. Also they require all techs running the PSG to be BRPT certified. So really you should just refer to the AASM as they are the ones effectively setting the standards for medicare. (Until such time as medicare decides to change that)

Medicare is effectively an insurance company. And as a single payer insurance company for the folks over 65 in this country, they wield enormous power. At the time of my OSA diagnosis, Medicare would have denied my coverage for my OSA because my AHI = 3.3 with Hs scored under the "AASM Recommended Standard," which was the only standard Medicare accepted at the time. My own employer provided insurance was willing to accept the OSA diagnosis based an AHI = 23.3 with the H's scored under the "AASM Alternative Standard."

And for what it is worth, the most recent document I can find on the official government pages for Medicare coverage for CPAP is at
Medicare cpap criteria. And this page clearly states:

Apnea is defined as a cessation of airflow for at least 10 seconds. Hypopnea is defined as an abnormal respiratory event lasting at least 10 seconds with at least a 30% reduction in thoracoabdominal movement or airflow as compared to baseline, and with at least a 4% oxygen desaturation.

And that definition is indeed the (old) AASM Recommended Standard for scoring Hs.

Hence, unless Medicare has recently agreed to use (what used to be called?) the "AASM Alternative Standard" for scoring H's (the standard that scores an H with arousal even if there is no corresponding O2 desat), it is still important to make a distinction between Medicare and the AASM.

[Papit]

quote="jnk"] It is not ResMed's job to teach us what the graphs mean. Although they don't stop us from looking at the graphs, they don't make the graphs for us. They make them for the clinicians.

The pros, perhaps rightly so, might view your question as much the same thing as their getting a call asking, "Can someone please explain to me why my thermometer doesn't report exactly 98.6 degrees every single time I take my temperature?" The answer is, it generally doesn't matter unless it reports that you have a fever.

Similarly, if your AHI is fine, docs consider the condition treated. If we as patients choose to use the numbers some other way, we do that on our own without them.

When we as patients with good machine-reported AHI tweak our pressures up or down, we do it to improve how we feel, not to fix how the graphs look.

When I used to go to my mom and say, "It hurts when I do this," Mom used to say, "Then don't do that." Similarly, if we have a good machine-reported AHI but find that the other numbers and charts are disturing our peace of mind, it might be best not to look at them. Those charts and numbers MAY help us find the right pressure for feeling our best. But may not. So our using them that way is not something done so much by the docs and manufacturers, since they don't care about how we feel as much as we do.[/quote]

I disagree. ResMed has a paid staff in San Diego for both patient support and greater-depth clinician/doctor support. It is certainly ResMed's job to train and teach sleep doctors how best to treat patients with their sleep machines. It is anomalous to consistently see multiple very high flow limitation spikes while a patient's AHI is very low. Asking questions is never a bad idea especially when strange things are observed. My own sleep doc actually suggested that I call them and ask about it. And he too agreed to call his usual local regional rep, probably a sales manager I guess. In any case, the ResMed support folks I spoke with in San Diego wanted to hear from my doc directly to further discuss the details of the anomaly of very low AHI in the presence of very high flow limitations. But he would not follow up for some reason. That's why I'm seeking help on this forum, hoping someone like a doc or tech would call and ask the general questions about the above discussed anomaly.

[Papit]

Papit, I'm guessing someone on here will have seen that before and/or have a plausible explanation. I think your question here is as reasonable as any other question about data and graphs and hope someone knowledgeable can address your concerns. Even if it is to say it's no big deal, it merits explanation. Do you have something going on making you question your treatment or was this an incidental finding? If I were intricately involved with my data and something was very different, I'd want to understand what I was seeing too. Good luck finding answers.

Thanks,kteague. No nothing special is going on except tiredness and lethargy that I associate with drug therapy I'm taking, and winding down on, for other conditions. I'm sleeping very well, mainly attributable to going to sleep when I'm very very tired from work I do at home and enjoy. I'm simply pursuing an explanation to a very strange anomaly: If my AHI is averaging about 1.0 or so, what could explain why flow limitations are way out of wack with the graph showing frequent nightly maximum high spikes. It's not either my style or training that allows me to simply ignore odd anomalies.

Thanks for your thoughtful reply.

[jnk]

Has anyone with medical training told you that it is "very strange," "odd," "out of whack," or "an anomaly"?

Sometimes comparing just one trait to traits of other OSA sufferers can be counterproductive.

OSA is multifactoral and treatments are not yet individualized to phenotype.

One recent study put it this way:

"Pharyngeal collapsibility is only one of several components contributing to OSA. . . . Results suggest that numerous possible combinations of traits can cause or prevent OSA. Indeed, it is difficult in many of the individuals to identify a single mechanism. Therefore, not only can OSA occur for different reasons, but several reasons may be at play in any one individual. For this reason, studies should focus on integrating the physiologic measurements rather than measuring a single trait."--"A simplified method for determining phenotypic traits in patients with obstructive sleep apnea"; Andrew Wellman, Bradley A. Edwards, Scott A. Sands, Robert L. Owens, Shamim Nemati, James Butler, Chris L. Passaglia, Andrew C. Jackson, Atul Malhotra and David P. White; J Appl Physiol 114:911-922, 2013. First published 24 January 2013; doi: 10.1152/japplphysiol.00747.2012

I believe that investigation principle has application in treatment and that all of us, to some extent, have "anomalies," whether they happen to be captured by graphs designed solely for trending or not.

But I ain't no doc. So I'll shut up about it now.

Hope you find your answers.

[JDC]

Well, I am more sympathetic than most. I live remote. Way, way, way out there. Remote island way up North. Ain't no technicians or techies willing or able to help me so I have to figure it all out myself. And, I must confess, it is somewhat confusing. We 'loners' don't have the benefits of townies-on-transit or even people who can drive-in and see someone. And God help the person going to the trouble of asking a normal doctor! Sgt Shultz of Hogan's Hero's knew more. For us, CPaP is short for crapshoot. Having said that, after almost three years I am getting fairly good readings. Still puffy eyes, tho. I hate that! It still isn't right but there is only so much energy available for each thing and sometimes, I am just too tired to take another run at experimenting with it. Kinda circular if you see what I mean...
Anyway...I understand your frustration. For you, it is health. For them it is money. The two will never mesh properly. But good luck.

[robysue]

I'm simply pursuing an explanation to a very strange anomaly: If my AHI is averaging about 1.0 or so, what could explain why flow limitations are way out of wack with the graph showing frequent nightly maximum high spikes. It's not either my style or training that allows me to simply ignore odd anomalies.

Papit,

I still think the most likely explanation of your "odd anomolies" lies with the settings on the two machines and an understanding of the algorithms they use during the night to treat your sleep disordered breathing. I also think that another important piece of the puzzle is exactly what kind of events were making up your AHI = 17 on the Autoset as well.

What were the settings on the S9 Autoset?

What was the (rough) distribution of CAs to OAs and Hs when you were using the S9 AutoSet?

What are the settings on the S9 VPAP Adjust?

[hueyville]

Take in mind I have a new sleep doctor and only one study since started with him I was tickled with his honest remark during my last visit. We had reviewed the titration study and the five weeks info following it. He had given me a starting pressure of 17 and told to add 1 cmH2O per week and we will look at results. After a week each going from 17 to 21 I had 4 or 5 days before our visit so switched machineto bipap and pressures that had been tolerable in past. Afterr looking at every night individually, each week as an average, the recent study and my personal dial winging data he said back to the lab. Also went so far as to schedule a total of three titrations before end of year saying my data and response to treatment is so freaky he has no clue as to what is going to work if anything. I go back into the lab next week so asked him what pressure to use till then. He picked up the 3/4 inch thick stack of reports and said they were so s rewey he hax no idea. A night of AHI 15 followed by night at 72 then 40 something then 8 followed by 90 and so on. Every week at every pressure. He said he could not even guess what type treatment yet and advised me to do whatever made me happy. He doubts he will find a repeatable good setting for another couple of months and a couple more titrations. I came home set machine up with best pressures I have found in 2.5 years but changed some of the other settings. After 7 days I thought I had made magic as my AHI weekly average was 10.7 with worst night at 15. Started feeling all big, bragged to wife and friends then night 8 was an AHI of 78. Thinking it had to be a fluke, next night was 51 followed by 9.7 then a staggering 93 last night. Thus I now have a doctor that is reputed to be good at his game and spends over 90 minutes with me in the room every visit. I see the tech once a week for a half hour visit and will end up with 5 lab visits this year. Last group gave up on me and this guy says he is sticking with me just for the challenge. That said, after reviewing my years of data says if we ever get md to an average AHI of 15 for the duration he will consider it a 110% success. Thus when I read about someone with an average AHI of 1 whining to point oc doctor sending him a letter to leave him alone and sounds like others are all doing same to point he is asking strangers to call fhe manufacturer for him as I guess they just let him roll into voice mail I have to believe some nuttyness is going on. Reeks of troll or trouble patient.

[chunkyfrog]

We are all different. Sometimes that little fact is missed; by family, employer, doctor, or even the patient.
What works for me may not work for you; and vice versa.
This brings out the beauty of this community--it is likely that nearly anyone needing help
may trigger a response from someone with a similar experience--hopefully with a solution.

[hueyville]

Chunkyfrog. Your response is why I went from lurking to posting. My doctor and I are both willing to listen to any idea even if from a specialist in anal stress ruptures or voodo.

[Mr Concerned]

We are all different. Sometimes that little fact is missed; by family, employer, doctor, or even the patient.
What works for me may not work for you; and vice versa.
This brings out the beauty of this community--it is likely that nearly anyone needing help
may trigger a response from someone with a similar experience--hopefully with a solution.

“Scientology does not teach you. It only reminds you. For the information was yours in the first place.” L. Ron Hubbard, quoting from his book 'Dianetics'.

He would have LOVED cpaptalk.com

[Mr Concerned]

Hence, unless Medicare has recently agreed to use (what used to be called?) the "AASM Alternative Standard" for scoring H's (the standard that scores an H with arousal even if there is no corresponding O2 desat), it is still important to make a distinction between Medicare and the AASM.

You know a lot about those rule changes I will give you that. But this just makes me a bit more curious about you. Let me ask- What do you think about all the medicare reimbursement cuts that started in January? Also, do you think that Medicare will end all reimbursement for sleep next year like everyone is predicting?

[Ptastic]

Chunkyfrog. Your response is why I went from lurking to posting. My doctor and I are both willing to listen to any idea even if from a specialist in anal stress ruptures or voodo.

Ignore those who practice voodoo.