Dr. Krakow, salesman extraordinaire? UPDATED

Observing casually from the outside, Bright Choice also has very high standards for herself. She dived into treatment 100% and from the moment she appeared on this board, she's been committed to optimizing her treatment, learning everything she can about it, trying existing techniques for coping with problems, and developing her own solutions. From what I can tell, she's not someone to stand around deliberating or hemming and hawing about whether to commit to this treatment or to a particular doctor. She would trust the information she's gathered and her gut, and she'd take action.

In short, high standards can lead to analysis-paralysis, or it can lead to action. In Bright Choice's case, I think it leads to action. (In my case, it may lead to reading a few dozen articles on the subject to make myself feel like I'm doing something. )

SleepingUgly wrote:Observing casually from the outside, Bright Choice also has very high standards for herself. She dived into treatment 100% and from the moment she appeared on this board, she's been committed to optimizing her treatment, learning everything she can about it, trying existing techniques for coping with problems, and developing her own solutions. From what I can tell, she's not someone to stand around deliberating or hemming and hawing about whether to commit to this treatment or to a particular doctor. She would trust the information she's gathered and her gut, and she'd take action.

In short, high standards can lead to analysis-paralysis, or it can lead to action. In Bright Choice's case, I think it leads to action. (In my case, it may lead to reading a few dozen articles on the subject to make myself feel like I'm doing something. )

SU - I am so flattered by your kind comments! You are so knowledgeable and such a great help to so many people here - I don't know how you can find the time to be so sharing and caring. You have a great sense of humor too - no sense in taking ourselves so seriously all the time!

I have really been overwhelmed by the thoughtful replies, advice and supportive comments that I have gotten on this site. It is truly extraordinary. There are some very good souls doing their work here!

(I'm in a remote location and don't remember my password, so I’m logging in as a guest)

SRSDDS wrote:Not to be disrespectful Mike, but I get the idea that you are more interested in the COST of your medical treatment than the QUALITY of your medical treatment.

Hi Steve. I'm interested in both.

I've paid tens of thousands of dollars above my insurance when I felt it was warranted.

SRSDDS wrote:I think you have absolutely no idea or choose to ignore the fact that even the greatest clinician needs to spend ungodly amounts of money just to be able to conduct his practice.

I know what it costs most doctors to run their practices. Besides the medical research literature, I also read the medical economics literature (a lot more fun to read), and I have friends who are doctors, and we talk about costs all the time, which usually consists of them venting about rising malpractice premiums, dealing with insurance paper work, etc.

SRSDDS wrote: You want great medical care and pay $15 per procedure to pay for it?

That is my GHI co-payment per visit. I pay much more annually to GHI for my yearly premiums.

They in turn, use their size to negotiate lower prices with doctors.

A doctor that might charge $500 for a consult will accept $300 from GHI because GHI will refer a tremendous volume of patients to him. He may not spend as long with me in the consult to make up the difference.

Most major disease doctors, such as oncologists, cardiologists, orthopedists, etc., know that the downstream revenue a GHI patient will generate (MRIs, multiple surgeries, on and on) will more than make it worth their while to take a discount off their "list" price. That's how all insurance operates.

SRSDDS wrote:How about wide screen TV's for $5

It's called Black Friday.



Mike

SleepingUgly wrote:What would be interesting is to hear from people with "ordinary" OSA who benefited from ASV. Course this is not even remotely as compelling (to me anyway) as a research study, but interesting nonetheless.

The Alberkerkee Approach treats ASV as a "comfort measure", used when "there's nothing left":

The End of the Line

The reseach study would need to remove the contribution of the healthy dose of CBT (which, "IMHO", is the major reason for improvement in this patient group), as well as considering that improvement could be due simply to Placebo or Hawthorne Effect.

Or for that matter, that the same goal could not have been achieved through optimization of traditional machine "comfort measures".

BrightChoice and JeffH, did you receive CBT in connection with your treatment by Dr Krakow?

Jade wrote:BrightChoice and JeffH, did you receive CBT in connection with your treatment by Dr Krakow?

What's a CBT?

JeffH

Cognitive Behavioral Therapy

http://psychology.about.com/od/psychotherapy/a/cbt.htm

http://www.nacbt.org/whatiscbt.htm

Example of CBT being used for insomniacs:
http://www.sleeplessincolorado.com/ther ... oach.shtml
Excerpt:
Northern Colorado Sleep Consultants use cognitive-behavioral therapies for the treatment of insomnia and nightmares, CBTi and CBTn respectively. Additionally they may use other non-drug treatments to reset the phase of the circadian clock when there is a problem with the setting of this body clock. Recently, there has been a convergence of evidence indicating that these sets of non-drug treatments produce reliable and durable improvements in sleep and significant reduction of the severity and frequency of nightmares. These effective treatments aim at making specific changes in behaviors and cognitions related to sleep and nightmares. As such, they are a specialized subclass of the more general cognitive-behavioral therapy frequently used in psychology. They have been shown to be more effective than general psychotherapy for treatment of insomnia and nightmares (Backhaus, Hohagen, Voderholzer, & Riemann, 2001; Krakow, Kellner, Pathak, & Lambert, 1995). They are generally well tolerated and acceptable to many insomnia and nightmare patients. Many are considered standard practice by the American Academy of Sleep Medicine (Morgenthaler et al, 2006).

There are four domains to CBTi:

Changing behaviors through sleep hygiene education, stimulus control, and scheduling time in bed.
Changing cognitions in order to reduce arousal and increase compliance with behavioral components.
Modulating the arousal system through somatic and mental relaxation training and by applying methods to decrease racing thoughts and cognitive arousal.
Adjusting, when necessary, the circadian rhythm for sleep, including proper timing of sleep-wake behaviors and light/dark exposure.
The target thoughts and behaviors for change in CBTi are those that are incompatible with sleep. These include thoughts and behaviors that increase physiologic and cognitive arousal and behaviors that disrupt the sleep-wake rhythm. In an attempt to control sleep, many people engage in behaviors that tend to perpetuate, rather than solve, the problem. These behaviors often increase frustration and arousal and may weaken the homeostatic and circadian sleep rhythm, thus perpetuating a vicious cycle of insomnia. CBT-I aims at reversing this.

rested gal wrote:Cognitive Behavioral Therapy

http://psychology.about.com/od/psychotherapy/a/cbt.htm

http://www.nacbt.org/whatiscbt.htm

Example of CBT being used for insomniacs:
http://www.sleeplessincolorado.com/ther ... oach.shtml
Excerpt:
Northern Colorado Sleep Consultants use cognitive-behavioral therapies for the treatment of insomnia and nightmares, CBTi and CBTn respectively. Additionally they may use other non-drug treatments to reset the phase of the circadian clock when there is a problem with the setting of this body clock. Recently, there has been a convergence of evidence indicating that these sets of non-drug treatments produce reliable and durable improvements in sleep and significant reduction of the severity and frequency of nightmares. These effective treatments aim at making specific changes in behaviors and cognitions related to sleep and nightmares. As such, they are a specialized subclass of the more general cognitive-behavioral therapy frequently used in psychology. They have been shown to be more effective than general psychotherapy for treatment of insomnia and nightmares (Backhaus, Hohagen, Voderholzer, & Riemann, 2001; Krakow, Kellner, Pathak, & Lambert, 1995). They are generally well tolerated and acceptable to many insomnia and nightmare patients. Many are considered standard practice by the American Academy of Sleep Medicine (Morgenthaler et al, 2006).

There are four domains to CBTi:

Changing behaviors through sleep hygiene education, stimulus control, and scheduling time in bed.
Changing cognitions in order to reduce arousal and increase compliance with behavioral components.
Modulating the arousal system through somatic and mental relaxation training and by applying methods to decrease racing thoughts and cognitive arousal.
Adjusting, when necessary, the circadian rhythm for sleep, including proper timing of sleep-wake behaviors and light/dark exposure.
The target thoughts and behaviors for change in CBTi are those that are incompatible with sleep. These include thoughts and behaviors that increase physiologic and cognitive arousal and behaviors that disrupt the sleep-wake rhythm. In an attempt to control sleep, many people engage in behaviors that tend to perpetuate, rather than solve, the problem. These behaviors often increase frustration and arousal and may weaken the homeostatic and circadian sleep rhythm, thus perpetuating a vicious cycle of insomnia. CBT-I aims at reversing this.

When I went to Dr. A$$hole in OKC back in January of '10 for insomnia issues he handed me a flier for a $24.95 online course for curing insomnia. I took it and it helped some. Reading Dr. Krakow's book helped more when I DO the things in the book.

Some observations re Dr K & ASV.

It seems probable to me that Dr K gets a higher proportion than normal, of patients who are dissatisfied with their CPAP therapy and thus he is more likely to use Bilevel & ASV techniques & thus is further more likely to get 'excellent results' with thos techniques.

Rested Gal has quite rightly pointed out that if we associate ASV with CompSAS then ASV is at best a solution for 15% or so of the SDB population. The concern I see raised repeatedly at cpaptalk is that getting people excited about ASV is just that, excitement that at best might suit 15% of us. NotMuffy has hammered that issue and raised the possibility of placebo effect (excitement about ASV => want ASV to work => ASV seems to work). These perspectives are fair comment. The current thread started by Paper_Nanny is a pretty good example of where the evidence to date is that ASV has not been right for Paper_Nanny and may not be in the future. Maybe Dr K could tune one to suit ?.

There have been comments that all machines may trend towards the ASV design (I have said so myself) but while that may be true, it would likely only be so because the current machines as they evolve can become all things to all people based on future sophisticated algorithms and compute power backed up by adequate sampling of the right factors (monitoring of: breathing effort, CO2, SpO2, etc: ) where these future machines can better work out what is happening with a user during the different phases of their sleep and can apply the best therapy required for that situation.

NotMuffy has highlighted many times that ASV machines can act like a sledgehammer cracking a nut if the Central Apneas/ Central Hypopneas that some one is experiencing, are not severe. But the ASV doesn't always know that. To be fair, the machines do try to only respond to patterns of Periodic Breathing.

One other poster in this thread mentioned very enthusiastically that their ASV can raise pressure by over 10 CMs in one breath (as I understood that post) . I have not found an ASV that is quite that aggressive. All the tests I conducted showed the machine (both brands) are unlikely to raise the pressure more than 3-4 CMs in a single breath but will repeat that for 3 breaths. Some ASV literature talks of 'normalizing within 3 breaths'. Again that pressure raising should only happen with central apneas But a misused Resmed machine (pre S9 version of ASV) or Bipap AutoSV (pre the latest PR 1 version) could try that with an obstructive apnea & that is not a very good thing to be doing.


In summary
Dr K may well be achieving great results with ASV for the type of people who are willing to go to him. (I would be such an example if I could get there). And that the type of people willing to go to him do look like those who are unhappy with CPAP or who may have more complicated SDB issues.

The bottom line though is that for the vast majority of people CPAP and AutoCPAP are perfectly adequate and for some Bilevel can add further value (such as for us aerophagia sufferers).

DSM

JeffH wrote:
IMHO all cpap machines will move toward what an ASV is now. It is just better therapy...

...I'm saying that an ASV machine reacts to each breath you take and treats it. CPAP or APAP doesn't do that. The pressure changes that happened when I tried APAP drove me nuts. The pressure changes that happen with me on ASV are sometimes pretty big (8cm to 23cm) in only breath and they don't wake me up. I find that amazing. I think it is because the ASV treats each breath and doesn't wait until you are having an apnea and then waits a while to see if it passes and if it doesn't starts raising the pressure...

...I'm not saying here that all machines should be ASV's. I'm saying the technology that is in the ASV machines will probably become more "main stream" in the treatment of SDB than they are now and the main reason I say that is the ASV's ability to treat each breath as is it taken.

Great comments JeffH – that’s a good explanation of this new ASV. I was also on APAP for a very short period of time and even with a narrow range of pressure it made me sleep poorly and feel terrible the next day. My ASV settings are higher and have a pretty wide range, but I am totally unaware of pressure changes when I sleep and they don't wake me up. That's the situation, I have no idea why. It must be the "magic sleepytime fairies" they put into the S9 vpap adapt.

I will also be interested in seeing whether or not there is a “trickle down” effect from this new technology where a “breath by breath” treatment would be effective for “ordinary” OSA. As good as current machines are, it seems that there is still such a big struggle for many to get the settings honed in and the desired results achieved. I read a lot of the threads on this site and the struggles people are having are huge. And that's just counting the people who are "in the game" long enough to find and utilize cpaptalk. Could a more “intuitive” system relieve many of those struggles? That alone would seem to be a good reason to explore this newer ASV technology outside the realm of CA, CompSA and CSR.

NotMuffy wrote:The Alberkerkee Approach treats ASV as a "comfort measure", used when "there's nothing left":

The reseach study would need to remove the contribution of the healthy dose of CBT (which, "IMHO", is the major reason for improvement in this patient group), as well as considering that improvement could be due simply to Placebo or Hawthorne Effect. .

So then, for a person who has been unable to tolerate or get good results from cpap, bpap, or abpap; CBT or the Placebo or Hawthorne Effect alone would have more of an influence than the ASV itself might have on problems with aerophagia, EDS, arousals, the CAP phenomenon, and poor air flow signals that Dr. K is postulating in the video?

Jade wrote:BrightChoice and JeffH, did you receive CBT in connection with your treatment by Dr Krakow?

Jade, my answer is “yes and no” – the information was there for me if I needed it, but CBT per se was not a focus for this visit.

Over many years, I have really “cleaned up” any issues relating to sleep hygiene so I didn’t have a need to discuss them. I had perused Dr. K’s book so I was already familiar with thought patterns that might be disruptive to sleep and how to overcome them. My interest in yoga and meditation had already given me a lot of assistance in that regard.

The clinic takes a “whole patient” approach in all phases of the process, from the pre-visit intake questionnaires, to the conversation in the sleep lab and through clinic appointments. So, it seems to me that whatever problems a patient might have that could be resolved by CBT would be identified and addressed quite early on.

NotMuffy wrote:

SleepingUgly wrote:What would be interesting is to hear from people with "ordinary" OSA who benefited from ASV. Course this is not even remotely as compelling (to me anyway) as a research study, but interesting nonetheless.

The Alberkerkee Approach treats ASV as a "comfort measure", used when "there's nothing left":

The End of the Line

The reseach study would need to remove the contribution of the healthy dose of CBT (which, "IMHO", is the major reason for improvement in this patient group), as well as considering that improvement could be due simply to Placebo or Hawthorne Effect.

Or for that matter, that the same goal could not have been achieved through optimization of traditional machine "comfort measures".

Interesting perspective.

Two weeks back, I had a go at reverting to CPAP to see how it would work out. I had wondered if being on ASV for the past 2 years, may have altered or trained my breathing for the better or alternatively if being on Nasonex for the past few years had changed the ease of breathing (nasal airway resistance). I chose the settings that came out of my last polysomnograph. CMS = 13 (the outcome of that study was that 12 or 13 CMs would be ok). Also have wondered if it is possible that ASV could make our nightime breathing 'lazy' in that perhaps the machine takes on too much of the effort & thus creates a breathing laziness ?.
Just to add a frame of reference am only mildy overweight (200lbs & 6ft) plus cycle 40 or so kms to & from work (20+20) on average 3 days per week (5 days / week if the weather permits - also traverse 300 ft altitude twice each way).

Day 1 seemed fine but sleep seemed very light & in retrospect not as satisfying
Day 2 seemed ok but there was an increasing feeling of restless sleep
Day 3 was not good - started dozing off at work felt so bad was not willing to continue with this CPAP experiment

Day 4 back on ASV (EEP 10 PS=3). And feeling very much back to normal. Would have tried Bilevel again if this ASV supported it but it doesn't & while my Bipap AutoSV does - wife would complain of the noise if I tried it over the Resmed.

Point I am wanting to make is that I am sure there is a placebo effect for some folk. But how would we prove it ? - after 2 years on ASV there is little chance I'll go back to any other type of therapy because after those 2 years am convinced it works best for me based on being willing to try different modes & to experiment as to what will keep me employed. Is this attitude based on placebo ? - not to me.

DSM

DSM, do you have central sleep apnea or complex sleep apnea?

I haven't heard anyone arguing that ASV doesn't work well for those. I think some people are questioning whether there is evidence (and people's definition of that varies) hat it works well for regular old OSA or UARS. Personally I have no opinion about whether it does or does not. I simply don't know. It sounds like it's more in the experimental stages for treating those disorders, and if someone doesn't do some research on it, it will remain that way in my view (by my definition of what's empirically based and what's not). That doesn't mean I wouldn't try it if I ran out of options in proven treatments.

SleepingUgly wrote:DSM, do you have central sleep apnea or complex sleep apnea?

I haven't heard anyone arguing that ASV doesn't work well for those. I think some people are questioning whether there is evidence (and people's definition of that varies) hat it works well for regular old OSA or UARS. Personally I have no opinion about whether it does or does not. I simply don't know. It sounds like it's more in the experimental stages for treating those disorders, and if someone doesn't do some research on it, it will remain that way in my view (by my definition of what's empirically based and what's not). That doesn't mean I wouldn't try it if I ran out of options in proven treatments.

SU,

That is the clincher - both my sleep studies (2005 & 2007) only showed OSA at around AHI 40. My sleep doc (senior staff adviser to the largest sleep clinic in Australia) originally said 'you don't look like you would have OSA' but after the study said 'I was wrong you have an AHI of 40'. And like so many other high flying OSA specialists, charged me $90 for each 15 mins of his time (had me waiting 30-40). Never did any follow up & when I presented my own research & data from using a bilevel he effectively said 'great I agree it is working for you go with it' & that was the last I saw of him & the last I want to see of him.

DSM

DSM, so how did you wind up on ASV?

SleepingUgly wrote:DSM, so how did you wind up on ASV?

SU

I was getting alarmed at the repeated failures of the other therapies (want to stay employed). At best I would describe them as my real placebos (honeymoon effect). Having read about the introduction of ASV & knowing how cpaps worked (intimately) it struck me as very logical that an ASV might offer a better result. It did - the difference was so great that it seemed ASV was simply the best. But it still had its ups & downs finally resolved for me when I got my masks to stop leaking & squeaking. Am always on the look out for symptoms of CO2 imbalance as that to me is the Achilles heel of the current ASV machines. They are designed to fix it *but* for known patterns such as CSR. They are also capable of inducing CO2 imbalance.

So in regard to ASV as a therapeutic approach. The counter point against it is that it was specifically designed for people with CSR, that got extended to cover CompSAS & some other forms of Periodic Breathing.

Not everyone has CSR or CompSAS so the argument is why use a machine that was not designed for the condition one is diagnosed with. If the bulk of people have OSA (per the stats Rested Gal referenced) then a machine that addresses OSA with a single stenting pressure is the answer. For those with OSA who find a single pressure problematic (i.e. adaptation to the therapy, their pressure is too high, accentuates silent gerd, causes aerophagia etc: ) then a Bilevel can help (most of the features to aid in easing the adaptation to CPAP therapy mimic bilevel is some form or other e.g. C-Flex, A-Flex EPR).

My use of ASV was because of lack of progress with CPAP, Auto CPAP & although Bilevel worked well for a while (this could well fall into the placebo category NotMuffy raises), it too was not working so well after about 4-6 months. Then in desperation went looking again & tried an ASV. One indicator was my ever vigilant wife would claim I was reverting to not breathing. But now after such a long period on ASV, the therapy is just working really well & thus far continues to do so. I just occasionally adjust the PS & also the EEP.

There are a few of us who have gone outside the recommended norm & adopted devices other than the primary recommendation. Question then becomes are we doing ourselves a disservice or are we finding our own way in dealing with a problem that is of considerable concern to us. The answer isn't clear.

ASV is still too new to know what new problems or new syndromes it may create. Dr Krakow may be one of the people who helps us get to these issues quicker.

Cheers DSM