Sourced from Classic Sleep Care-Totally CPAP by Dr. Steven Park: Part X (Final Words, Thoughts and Controversies)
Let’s conclude this ten-part blog series of Dr. Park’s book, Totally CPAP, with a review of his final chapter. Dr. Park brings up highly relevant topics in summarizing key points in his programs, as well as offering additional options on how to proceed should CPAP simply not be the right fit for you. We will delve deeply into some of these themes, because they bring to light crucial controversies in the field of sleep medicine on how to deal with CPAP failure.
At the outset, I wish to clarify some points from a recent conversation with Dr. Park in which I learned that he performs all the CPAP coaching himself in his office (very impressive!) and despite being a surgeon he is a stalwart defender of the use of PAP therapy in the majority of his patients. For those of you who follow his website, blogs and podcasts, you also know he is quite iconoclastic and remains steadfastly in the hunt for new and better ways to effectively treat sleep apnea patients. The most remarkable thing about Dr. Park, in my opinion, is to see someone attain such heights of excellence while simultaneously at the mercy of the various sleep labs and DME companies. I say this because he does not operate a sleep center or sleep laboratory in his own practice. Given the advances he has made already in his sleep career, I would strongly advise him to open up his own sleep center for which he would undoubtedly function superbly as a medical director of both a center and a lab. Knowing how rapidly he acquires knowledge, I am certain he would be successful, and I hope many other professionals will encourage him to consider such a path at some point in his career.
I trust this backdrop will also make very clear the distinctions between Dr. Park’s practice models and that of mine at Maimonides Sleep Arts & Sciences. Nearly all of which I would attribute to Dr. Park not gaining the opportunity to deal directly with a sleep laboratory and numerous sleep technologists. In opening my center (Maimonides Sleep Arts & Sciences) 16 years ago and working at a university sleep center for several years prior, there is no question that my largest library of knowledge came from direct contact with a series of sleep technologists and of course, my patients.
And, this approach to knowledge acquisition brings me to one of the very first items Dr. Park asks of his patients, which is “what if you tried and failed CPAP, APAP or BPAP?” And, here is where our paths diverge, because my next question would be, “and what about ABPAP or ASV?”. Dr. Park humbly and honestly engages his CPAP failure patients within two frameworks:
- A) Those not receiving an inadequate response to PAP
- B) Those reporting the worsening of sleep when trying to use PAP
These circumstances, where the cure is not just worse than the disease, but the cure worsens the disease, are what drove my sleep technologists and me to attempt to find a new way. We assumed this worsening of sleep must be considered a huge “red flag,” signaling a need to explore new treatment pathways. At first, the path was bilevel or BPAP in 2005, but ultimately between 2008 and 2011, the answer turned out to be ABPAP (auto-bilevel) and ASV (adaptive servo-ventilation).
And, what drove us to these advanced technologies? Fixed pressure, whether it is the single fixed pressure of CPAP or the auto-adjusting fixed pressure of APAP (it’s fixed in time and space for every breath taken), or the fixed settings of BPAP (it’s fixed at one pressure when you inhale and fixed at a lower pressure when you exhale) is not natural to human respiration. And, though some people can and do adapt to fixed pressure models and many report excellent responses to these devices, there remain CPAP failure cases at a rate of 50% or greater at any given moment in most clinical practices. Shockingly, instead of asking the question, “what could possibly be wrong with CPAP?” most sleep centers dance around the technology side of the equation and keep foisting the blame upon patients, demanding they work a little harder and a little longer. Apparently, if you simply persist in your efforts at CPAP or APAP or BPAP, you will succeed—except you don’t—if you are among half of the patients who fail miserably with many of these modes.
We have now treated several thousand patients in these circumstances, and their stories are nearly identical. They were never offered an advanced mode of therapy. They were never informed about advanced modes of PAP, and, most glaringly, they were led to believe that they were the cause of CPAP failure. Somehow, they just could not be properly educated on how to use PAP. Somehow, they just could not adapt because they did not try long enough to adapt, and somehow, they really weren’t cut out for PAP therapy.
This hogwash by the way, is the same line of reasoning we hear repeatedly from medical directors (almost never board-certified sleep physicians) of insurance companies who direct us to tell our patients to try a little harder and try a little longer or else just give up and try again in the future when your motivation is a little stronger because you have been suffering a little be more.
Dr. Park raises the most salient question of WHEN should someone be able to detect the difference in the effects of PAP therapy on sleep quality, especially in the context of someone having experienced years of sleep debt from untreated OSA/UARS. After all, if you have suffered for decades from horrible sleep deprivation due to the years of chronic sleep fragmentation from hundreds of respiratory events during the night, why would you expect to feel better right away? It’s a great question, but the fallacy is one often overlooked by so many sleep physicians, even among those who run their own sleep operations. Dr. Park’s question is spot on, but because he is not in the trenches of a sleep lab facility, he does not have the opportunity to see why in fact a person could experience a transformative single night of higher quality sleep with advanced PAP. Indeed, this magical night of sleep is experienced by 70% to 80% of our patients the very first time they use ABPAP or ASV, and they respond tellingly by informing us, “I slept better on this one night than I have ever slept during five years of CPAP.”
Becoming aware of this phenomenon not only corroborated our experiences with advanced therapy but drove us to understand the scientific basis for such superlative results. The answer proved to be close at hand. When you treat flow limitation in most CPAP failure patients, you can avert the problem of expiratory pressure intolerance by manually titrating the auto-adjusting algorithms of the advance PAP devices—either ABPAP or ASV—and the result is one or more obvious changes in sleep architecture as described next. These stunning results appear to correlate with the patient demanding to know, “why wasn’t I offered the chance to use this device ‘fill-in-the-number’ years ago?”
These sleep architecture changes included more periods in the night with fully normalized airflow, less time spent in lighter stages of sleep, more time spent in consolidated REM sleep, and so on. None of these magical experiences for our patients were based on magic. To paraphrase William Jefferson Clinton, “it’s the technology, stupid!”
Yet, repeatedly, thought leaders in the field of sleep medicine, most of whom work in top-tiered academic sleep medicine centers at major universities around the world, pay scant attention to the role of technology in improving patient responses to PAP therapy. Even less than scant attention is paid the nexus between efforts to titrate our RERAs while ameliorating the problem of expiratory pressure intolerance. And this turning of a blind eye toward technology has greatly narrowed the options that would so greatly benefit CPAP failure patients. Nowhere is the evidence more robust, to reiterate, in the first night titrations of CPAP failure patients introduced to ABPAP or ASV when manually adjusted by the sleep technologist. And the other variation of their responses quite commonly was, “Where was this device when I was first treated?”
In sum, there is another way, but this way remains hidden from view because so many people in the field of sleep medicine just cannot imagine how technology might solve the problems of PAP therapy. This failure of imagination is incredibly ironic as I have mentioned before when one considers the technological age we are living in where invention after invention and upgrade after upgrade to these inventions are dramatically improving the quality of our lives. Hopefully and much sooner than later, hanging on to CPAP will in fact be perceived as planned obsolescence, after which more and more sleep professionals will demand newer technology for their patients. Such a day cannot arrive soon enough, in my opinion.
Dr. Park then moves on to spend time going over certain principles for those who will switch from PAP to OAT or surgery, and I think his singular comment here is worth spelling out: “There are good published guidelines by various specialty societies that are great rules to follow, but an in person evaluation by a qualified sleep surgeon is away best.” He also lists several other alternatives such as the didgeridoo wind instrument and tongue exercises that some people may want to explore. In your investigation of mandibular advancement devices (oral appliance therapy, OAT), he also suggests how the role of sleep endoscopy can provide precise data on likely success rates. To that I would add the standard jaw thrust maneuver where you hold your lower teeth (thrust) forward in front of your upper teeth, and with your lips still closed, notice whether nasal airflow is any smoother or the volume is any larger.
Next, there is a discussion about the value of the online community, and in general I agree with Dr. Park’s strong recommendation to engage with other patients in this realm. Undoubtedly, you will find social media an excellent way to communicate on various issues, many of which other sleep apnea patients have already experienced and resolved. The main weakness to online communities is that they are only as effective as the knowledge base being discussed. One of the most reliable and worthy sites is CPAPTalk.com, which covers numerous areas and where much informative and entertaining discussion occurs. Yet, you will not find many answers there about manually titrating ABPAP or ASV in a sleep lab. Moreover, you are more likely to find skepticism about the use of advanced PAP devices, because even among most sleep apnea patients the lingua franca by and large remains CPAP then, CPAP now, and CPAP forever with only an occasional hat tip to APAP or BPAP. Not to mention almost no recognition of advanced PAP.
Then, there is a discussion about data capture, including your own device’s download plus the use of 3rd party software to more easily capture data. Although I anticipate such software will continually improve, serious concerns currently revolve around whether they provide accurate data on flow limitations. Other concerns involve accuracy of standard breathing event indexes such as AHI as well as leak measurements. In both instances, when we are using data downloads from the device itself, we target the AHI to be less than 1.0 and preferably less than 0.2. Leak numbers have greater variability due to mask types and PAP modes, but again, we are targeting less than 4 lpm in all patients and preferably zero leak. Therefore, when using other software, I want my patients to know precisely where things stand and whether these targets can be met.
I very much appreciate how Dr. Park encourages you to remain vigilant on a nightly or weekly basis to look for small changes that might interfere with your response. Chronic nasal congestion could worsen AHI, flow limitation, and leak, so it should be addressed aggressively. Some patients unequivocally must switch to a full-face mask and some unequivocally must use a chinstrap. Remarkably, many sleep professionals often do not recognize that some patients unequivocally require FFM and a chinstrap together.
As Dr. Park concludes, the most pro-active patients who show the most resourcefulness are the ones who achieve the best responses. But, what in fact is the best response? One of the most common questions we ask of our patients is, “Do you think this is as good as it gets?” Or, “Do you think there is still ‘more better’ to be attained?” This type of conversation between patient and sleep professional is essential for any attempts to truly find the pathway to optimal results.
Wrapping up his discussion, Dr. Park brings up a huge administrative factor regarding your medical records. He astutely points to the necessity for obtaining and maintaining copies of most or all of your sleep records, especially your sleep studies. I can assure you, you will be eternally grateful to Dr. Park for taking this step as it will allow you much easier access to equipment and supplies whenever you move to a new location or switch to another sleep center.
It has been a great pleasure as well as an honor to read and review Dr. Park’s book,Totally CPAP. I have learned a lot and hope some of my comments have also added to your knowledge base. As I indicated previously, this book is an outstanding resource for new PAP users, and I admit that the book would be quite helpful to many sleep doctors and sleep technologists, who will learn more about a sleep apnea patient’s perspective, struggles and solutions in working with sleep medicine professionals to learn how to use CPAP.
Thank you, Steven, for your practical, valuable, and easy-to-understand contribution to the sleep medicine literature.