Dr. Krakow, salesman extraordinaire? UPDATED

JeffH wrote:I'll actually post to this thread as an actual patient of Dr. Krakow.

Over all I had a good experience with him. I'm now on ASV and sleeping better than I have in a long time. Last nites AHI was 0.4 with one wake up in the night.

After my last sleep study with him the in person appointment the next morning was one hour and 20 minutes long. When is the last time a doctor spent that much time with you? Yes, me neither...LOL.

Walking out the door he had some interesting things to say about the future of medicine in general. IMHO all cpap machines will move toward what an ASV is now. It is just better therapy, and I think Dr. Krakow is ahead of the times.

Hello, Jeff.

Can you rate the relative importance of these events in your SDB journey:

• A 33% weight loss;
• Removal of facial hair and its influence on leak control;
• Dial wingin' for 12 years with xPAP machines that may have been ineffective in correcting a toxic central apnea index;
• Beginning appropriate (ASV) therapy to address above;
• Road trip to Alberkerkee that included significant discussion about "sleep", and not just "sleep-disordered breathing".

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

Are you speaking of all machines moving to ASV for only those patients who have difficulties with central apneas?

I have straight obstructive apnea and have adjusted well to simple CPAP. I sleep seven to eight hours per night and maintain AHI < 2.0.

It would be quite surprising and somewhat disturbing (to my wallet) to find that I need to purchase an expensive ASV machine.

Mike6977 wrote:[

Motive wise, I'd have to say that the majority of doctors I've met were businessmen first, and clinicians a distant second.

Mike

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. 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. You want great medical care and pay $15 per procedure to pay for it? How about wide screen TV's for $5, trips to Disneyland for $3, a cart full of groceries for $1?

Stephen

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

It's better therapy for some people. Not for all (imho.)

VVV wrote:I have straight obstructive apnea and have adjusted well to simple CPAP. I sleep seven to eight hours per night and maintain AHI < 2.0.

It would be quite surprising and somewhat disturbing (to my wallet) to find that I need to purchase an expensive ASV machine.

I don't think most people with sleep disordered breathing in the form of straight obstructive apnea would do better at all on ASV therapy. People with plain OSA might not do as well, or sleep as comfortably, as with a steady single pressure delivered by simple CPAP.

The ASV has its place -- it's the "go-to" machine for dealing with Cheyne Stokes respiration. ASV treats people with primary "central apneas" very well. It can also be helpful for people who have Complex Sleep Apnea if the CompSAS centrals don't subside on their own when given enough time (could be up to several months) on regular cpap or regular bilevel.

I think it's easy to get so enthusiastic about something that works well for us that we think it would work great for everyone. Especially if the person has gone through a long struggle and worked hard to try to feel better. JeffH, I've very glad you're happy with your machine and the treatment you're receiving. I'm happy for VVV, too... doing well on "simple CPAP."

NotMuffy wrote:

JeffH wrote:I'll actually post to this thread as an actual patient of Dr. Krakow.

Over all I had a good experience with him. I'm now on ASV and sleeping better than I have in a long time. Last nites AHI was 0.4 with one wake up in the night.

After my last sleep study with him the in person appointment the next morning was one hour and 20 minutes long. When is the last time a doctor spent that much time with you? Yes, me neither...LOL.

Walking out the door he had some interesting things to say about the future of medicine in general. IMHO all cpap machines will move toward what an ASV is now. It is just better therapy, and I think Dr. Krakow is ahead of the times.

Hello, Jeff.

Can you rate the relative importance of these events in your SDB journey:

• A 33% weight loss;
  

  About the only thing I can see that happened with the weight loss is I started getting air in my belly and I'd never had that before

• Removal of facial hair and its influence on leak control;
  

  Since I changed from using only nasal pillows before ASV, I can't say much. Shaving off the facial hair did help seal the FFM though.

• Dial wingin' for 12 years with xPAP machines that may have been ineffective in correcting a toxic central apnea index;
  

  Not sure I understand what you are asking....if it is was this better than nothing, it was. When I had cpomplications from nasal surgery and couldn't use CPAP for a week it was the most miserable week of my life. I've never been so tired before.

• Beginning appropriate (ASV) therapy to address above;
  

  Could feel a difference from the first night.

• Road trip to Alberkerkee that included significant discussion about "sleep", and not just "sleep-disordered breathing".

Very helpful. I have three other issues that could affect my sleep and all were talked about with plans of action for dealing with them

VVV wrote:

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

Are you speaking of all machines moving to ASV for only those patients who have difficulties with central apneas?

I have straight obstructive apnea and have adjusted well to simple CPAP. I sleep seven to eight hours per night and maintain AHI < 2.0.

It would be quite surprising and somewhat disturbing (to my wallet) to find that I need to purchase an expensive ASV machine.

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 is 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.

rested gal wrote:

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

It's better therapy for some people. Not for all (imho.)

VVV wrote:I have straight obstructive apnea and have adjusted well to simple CPAP. I sleep seven to eight hours per night and maintain AHI < 2.0.

It would be quite surprising and somewhat disturbing (to my wallet) to find that I need to purchase an expensive ASV machine.

I don't think most people with sleep disordered breathing in the form of straight obstructive apnea would do better at all on ASV therapy. People with plain OSA might not do as well, or sleep as comfortably, as with a steady single pressure delivered by simple CPAP.

The ASV has its place -- it's the "go-to" machine for dealing with Cheyne Stokes respiration. ASV treats people with primary "central apneas" very well. It can also be helpful for people who have Complex Sleep Apnea if the CompSAS centrals don't subside on their own when given enough time (could be up to several months) on regular cpap or regular bilevel.

I think it's easy to get so enthusiastic about something that works well for us that we think it would work great for everyone. Especially if the person has gone through a long struggle and worked hard to try to feel better. JeffH, I've very glad you're happy with your machine and the treatment you're receiving. I'm happy for VVV, too... doing well on "simple CPAP."

Don't disagree with you at all RG. In fact I think early on straight CPAP did me well. It took a little time for my centrals to get bad, but they did.

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.

rested gal wrote:

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

It's better therapy for some people. Not for all (imho.)

If there is any significant physical difference between ASV machines and the more familiar bilevel rigs now, it will probably disappear as technology advances. Eventually, ASV will probably be just another tier in a family of machines with identical hardware. The low-end machines will have most of their features disabled to justify charging more for the high-end machines, even though they all cost the same to make. And the high end will probably split into different models with different features, even though with the right firmware a single model could do everything, because someone at Resmed thinks that this will somehow increase profit. I doubt that the difference between any of the S9's up to autoset is worth more than $10.

True bilevel PAP probably needs a more powerful motor to create the wider pressure swings, and so the VPAP model will always cost more. But in an increasingly robotic world, the cost of producing ASV won't be any more expensive. The cost of buying ASV, otoh, will be whatever Resmed thinks they can get away with.

So while I agree with RestedGal that ASV is not necessarily better than CPAP for some people, I also agree with Jeff that cpap machines will, at least physically, converge with ASV somewhat, and there won't be any more difference between the bilevel and ASV machines than there is between the S9 Escape and Autoset now.

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.

In my opinionated opinion as a patient, the difference(s) between CPAP (including APAP), bilevel, and ASV is/are the nature of the treatment itself, not just machine parts.

CPAP (including APAP) helps keep the airway open for a person whose only problem is that his airway does not stay sufficiently open during sleep. (It can also treat other things, but my statement is in the context of sleep.) Bilevel helps the breathing process itself a little, and the lower EPAP can make treatment of OSA more comfortable for a person who needs a relatively high pressure to keep the airway open (such as more than 15 cm of pressure).

ASV, on the other hand, is designed to help a person who has a problem beyond his airway not being sufficiently open during sleep. That problem is what is being directly addressed by the ASV, but it so happens that the ASV can also, simultaneously, keep a person's airway open too. Thus, the beauty of the ASV is that it addresses the problem it addresses while ALSO keeping the airway open when someone also has OSA.

It is true that sometimes OSA can appear to lead to problems that an ASV is designed to help, and sometimes a problem of that sort can appear to lead to OSA--so there may be very real interaction among the various conditions in some people. But all in all, treating an unstable airway is one thing, and helping what an ASV helps is another thing.

Furthermore, as mentioned, sometimes problems beyond OSA are also fixed by CPAP, so that makes it prudent to try CPAP first to see if a stable airway (and the accompanying stable sleep) over time is enough to allow the body to heal other problems on its own. If those problems do not go away, though, it is time to either find out what is causing those problems in order to actually treat them OR use an ASV to simply stabilize sleep when the condition it addresses occurs.

As for doctors Krakow and Park, I consider them nothing less than medical geniuses who walk among us, ones who are a particular treasure for the people who have failed to get relief through standard treatment methods. (That doesn't mean a guy as stubborn as me will always agree with them, but I very much respect what they do.) Both of them are perfectly willing to think waaaay outside the box of standard approaches, and they seem to have a staff who are useful for convincing insurance companies to allow them to do so.

Drs. Park and Krakow appear particularly to enjoy helping patients who have been unable to find help elsewhere. The docs don't work for free, and they ARE masterful salesmen who know how to drum up press coverage and how to stay in the public eye. In my opinion, though, that is NEEDED for what they do, since it is word of mouth that allows patients in trouble to find them. One excellent side effect of what they do in creating publicity is that it draws national and international attention to sleep-breathing problems, and everyone knows we need all that we can get so that sleep treatments are more accepted socially and more people are aware of them.

If a doc isn't a good business man, but plans on practicing in this country, he'd better hire a few. Most docs don't do well at thinking about medical stuff and money at the exact same time, so misunderstandings will always occur. If a doc's office tells the doc he accepts most insurance, the doc will not likely get bogged down in the details of what that means or how it occurs. He will probably just parrot what his office staff tell him.

Personally, I would consider using ASV in an attempt directly to treat OSA or UARS to be a silly thing to do. BUT, someone with OSA or UARS may also have the sort of problem that an ASV would address well while the ASV also provides enough PAP to be of help with airway stability problems such as OSA and (sometimes, anyway) UARS. So, to my way of thinking, just as adjustments to sleep hygiene, or treating PLMD, can help a person sleep better in conjunction with PAP therapy, addressing what ASV addresses can be done in conjunction with it's concurrent ability to keep the airway open, since that form of treatment also involves PAP. Therefore, although ASV isn't for treating a diagnosis of OSA or UARS alone, that fact should not PREVENT anyone from being allowed to try an ASV if there are any indications he also has problems that an ASV would address.

At least, that's how this opinionated patient feels about it all. I hope people here would feel free to correct anything too far in left field in the opinions I expressed above.

I also wish that that the two docs mentioned above felt safe enough to interact with us directly on this board. Perhaps if we all behaved ourselves a little better, they would. It is always cool when pros contribute to patient boards. You can't buy that kind of publicity and advertising, despite the risks.

Jade wrote:

Bright Choice wrote:...Every aspect has exceeded my expectations!...

Hearing about your experience is really helpful. If I might clarify one small piece of it...? The line I left in above--what were your expectations?

I didn't know what to expect in Albuquerque. I did enough "research" to feel comfortable in making the decision to go there, but was aware that the outcome could be either positive or negative. I hoped for a good experience but was aware that I could be disappointed as well. So, perhaps I was "cautiously optimistic".

In general, how do your expectations compare with others?

I can only share my own experiences, I don't know about others. Perhaps I am unclear about what you mean here.

EDIT to add:
I just have to add one additional element of having my "expectations exceeded" during my visit to Dr. K's clinic. I had 3 nights in the lab. Upon awakening, the therapist took me into the lab's work station and gave me an overview of what occured during the night and they were there to answer any questions I might have. Then, 2 or 3 hours later, when I arrived at the clinic to check in for my appointment with Dr. K, the receptionist handed me a full report from the previous night, already reviewed and signed off on by Dr. K. I was able to read the report before my clinic visit and had time to prepare my questions for Dr. K.

Now that is "customer service", imho! When I had my previous psg done, I waited 3 weeks for the report.

To add to what BC said, I asked their office to fax or email me the full report of my sleep study. They did and when I got home from the second study the full study was waiting for me in my inbox on email. I didn't have to ask the second time.

The first month when I was trying to get bi-level to work didn't go as smooth as later, but things worked out.

JeffH

Bright Choice wrote:

Jade wrote:In general, how do your expectations compare with others?

I can only share my own experiences, I don't know about others. Perhaps I am unclear about what you mean here.

Let me give you an analogy that will hopefully clarify my question...
A friend's expectations for a good meal are satisfied by McDonalds. I barely consider that food and my expectations would be sorely disappointed.

In short, how picky are you compared to other people you have observed? How high are your standards? Is average performance good enough, or do you expect high competence and excellence?

For me, speed of getting the report is a customer service issue, and while laudable, does not rate as high for me as actual treatment. In my case, I'm more concerned with expertise in obtaining a positive outcome with an outlier response to treatment.

It's that whole Movie Reviewer Syndrome...

Jade wrote:Let me give you an analogy that will hopefully clarify my question...
A friend's expectations for a good meal are satisfied by McDonalds. I barely consider that food and my expectations would be sorely disappointed.

In short, how picky are you compared to other people you have observed? How high are your standards? Is average performance good enough, or do you expect high competence and excellence?

Not that you're asking me, but to keep this interesting... Doesn't it usually depends on the topic? For example, one glance at my fingernails would suggest that I have horribly low standards for nail grooming, yet a spot on a shirt will drive me nuts. My standard for a fast meal that I paid little for is different than if it was $20+ an entree.

Personally, my standards for competence from doctors is exceedingly high, and they rarely meet my standards all the time and in all aspects. I read a great deal and if they contradict or are unaware of something that I know to be true, I'm disappointed. If they cite their mother, their wife, or their child as evidence to support their point (even one doctor who did have 6 children, so that is a fairly high N), I am disappointed that that's his/her basis for drawing conclusions. If they rush me through the appointment or are unempathic, I'm disappointed. That said, I've still managed to be satisfied and even very satisfied with doctors who manage to do much of the things that I find important, and I give doctors who try hard a great deal of credit for their persistence and caring.

In my case, I'm more concerned with expertise in obtaining a positive outcome with an outlier response to treatment.

(Let's leave aside that IMO, that partly depends on you and not just their expertise...)

If that's true, you should make it a priority to go to the best place you can get yourself to. So assuming you have the same high standards for your own education in sleep-related matters, you dive into the literature and you see who the experts are and you go see them. Sure, Dr. Joe Shmoe in Boise, Idaho may be a fantastic sleep doctor, but it's going to be very hard for you to learn that. By definition you'll find the doctors who are publishing frequently, which IMO is not a bad thing as it means they are likely very committed, deeply rooted in the field, have colleagues that serve as reality checks to their work, are in the know of what's sound, what's new, and what might be coming up on the horizon. But this is how *I* make decisions, based on lots of information, ideally empirically-derived. Others make more intuitive decisions or gut-level decisions based on other kinds of information. I'm not sure that one standard is higher than the other (although one may be more time consuming...).

That said, I have a pile of articles about maxillary expansion in front of me, I need to learn about bilevel, and if I have time, I'd like to refresh my memory of CAP analysis. After I finish biting my nails.

Jade wrote:

Bright Choice wrote:

Jade wrote:In general, how do your expectations compare with others?

I can only share my own experiences, I don't know about others. Perhaps I am unclear about what you mean here.

Let me give you an analogy that will hopefully clarify my question...
A friend's expectations for a good meal are satisfied by McDonalds. I barely consider that food and my expectations would be sorely disappointed.

In short, how picky are you compared to other people you have observed? How high are your standards? Is average performance good enough, or do you expect high competence and excellence?

For me, speed of getting the report is a customer service issue, and while laudable, does not rate as high for me as actual treatment. In my case, I'm more concerned with expertise in obtaining a positive outcome with an outlier response to treatment.

It's that whole Movie Reviewer Syndrome...

Then consider me a very picky person, just ask my husband . I go for high competence, excellence, action, integrity and accountability. Getting a speedy report is extremely important if you are results oriented and don't want to dilly-dally around. A slow report = delayed treatment.

It is all customer service - getting properly diagnosed and effectively treated in a timely manner.