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Airway and diagnosis
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Paula McCabe Offline

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Post: #11
RE: Airway and diagnosis
(07-29-2015 01:10 PM)TyroneShoes Wrote:  
(07-14-2015 08:11 AM)Paula McCabe Wrote:  ...Can't someone have a normal airway volume and still have apnea?
...

My AHI is around 5.6 and my 3-D airway reconstruction is normal while awake but my blood oxygen drops into the 80's for hours during sleep studies and two sleep endoscopies showed airway collapse....

Lets look at this part of what you are saying.

An apnea refers to an apneic event, or an interruption in respiration, typically during inhalation. OSA does not coexist with "normal airway volume" for the moment an OSA event occurs. But "normal airway volume" is not a static thing. It is dynamic; it changes from moment to moment.

CA and other breathing issues can certainly coexist with normal airway volume, because CA events have little or nothing to do with the airway, and are mostly driven by CNS issues.

Those are not guesses; they are facts. But this is a guess: the fact that you have a very low diagnosed (or treated, not sure which) AHI seems incogruent with low 02 sat levels. IOW, it seems like the apneas are not really the entire story behind that. I think that is a burning question I would want my sleep doc to answer for me.

You have an AHI of 5.6, which means that you had on average 5.6 apneic events per hour in this sleep session. Some of those could be OSA events. So endoscopic reports of airway collapse confirming that should not be unexpected, and that may indicate that some of these events are OSA events. SleepyHead, which you have, will tell you whether you are having OSA events when using xPAP, so there really is already an answer waiting for you regarding that. You don't need endoscopic evidence to determine that.

OK, facts and guesses are over. Now, opinion. Mine is that endoscopy is an invasive procedure not commonly necessary with sleep studies. Certainly there may be a legitimate reason to do this, but I would be alarmed by a doc that wants to pull every arrow out of the quiver at the drop of the hat, including this, 3D modeling, and suggesting MMA when you still have many unanswered questions. There is a fine line between this sort of medical excess and Dr. Mengele.

And by the way, it would be criminal to do anything that might change that face.

Shy

In response to your post I asked Dr. Park why I should expect positive MMA results
when Auto BiPAP not been effective enough. He said PAP machines don't always work.

Dr. Park spent 10 years devoted to studying apnea and I flew to see him last year. What he said he learned over the years is to "treat the patient" rather than, I suppose, going by other principles.

He pointed out that unless breathing stops for 10 seconds, an apnea event doesn't register. So I could be disrupted all night long by shorter cessations and have 0 AHI. He actually said I had UARS.

I think the blood oxygen level dropping is very telling. I tried to attach my sleep endoscopy but it is too big. My airway closes and you can hear the suction as I try to get air.

Thank you!
Paula
(This post was last modified: 07-29-2015 03:19 PM by Paula McCabe.)
07-29-2015 03:18 PM
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Post: #12
RE: Airway and diagnosis
UARS was suggested in post #2. It's becoming increasingly recognized by sleep professionals, although insurance and Medicare is late to the game. xPAP works very well for people affected by it.

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07-29-2015 05:53 PM
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Paula McCabe Offline

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Post: #13
RE: Airway and diagnosis
(07-29-2015 05:53 PM)Sleeprider Wrote:  UARS was suggested in post #2. It's becoming increasingly recognized by sleep professionals, although insurance and Medicare is late to the game. xPAP works very well for people affected by it.


Yes, it was actually after post #2 that I spoke to the doctor and he referred to it as UARS. I wish I could post the sleep endoscopy. It was quite a relief to finally, after all these years, see what was going on. So many doctors wanted to send me to see psychologists and told me I didn't have apnea. And Dr Park says it a real common pattern for patients with my profile to be turned away.

I'm starting to look forward to surgery! Smile
07-29-2015 06:29 PM
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TyroneShoes Offline

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Post: #14
RE: Airway and diagnosis
(07-29-2015 03:18 PM)Paula McCabe Wrote:  ...Dr. Park ... pointed out that unless breathing stops for 10 seconds, an apnea event doesn't register. So I could be disrupted all night long by shorter cessations and have 0 AHI...

His 10-year practice has then allowed him to point out what is quite obvious to anyone who spends an hour on the internet researching xPAP technology, something you can figure out on your own without ever even leaving this website.

Being an expert in your field does not ensure that you will make the best choices in treating your patients, and being an expert also does not mean that those without expert status can't know and understand fully this basic tenet of AHI and how it relates to 02 desat just as well as an expert in the field can. He is an expert. I am not, and you are not. But once told this, you understood it, even without expert status, which proves my point.

The entire end goal of treating apnea is to prevent 02 desat. Keeping the airway open is actually only an indirect means to that end, and is not the end goal. And keeping the airway open is not always enough to prevent 02 desat, and your particular case may be a prime example of that.

What may not be as obvious is that there is a very good reason why apneic events shorter than 10 seconds are not registered, which is it is very unlikely that such events can cause 02 desat of any significance. If they were of significance, they would be registered. But they aren't, because they aren't.

That means that an AHI of 5.6 is still a reliable indicator that SA is not causing significant 02 desat, regardless of these supposed and as-yet unconfirmed events, which means that desat down into the 80's is likely driven by something other than SA, or something other than issues with keeping the airway open. Especially when the patient has an AHI of only 5.6.

But are these sorts of events enough to aggravate UARS? The classic xPAP treatment is to prevent SA events, and that by extension is supposed to minimize arousals indirectly, and it mostly does. But that may not be enough to effectively treat UARS for many of us.

But this brings me back to what I think is the central question, which is how is MMA, which is targeted towards helping to keep the airway open, going to benefit UARS, when xPAP, a significantly more effective methodology for keeping the airway open, is not capable of doing that for you? Don't forget that if an AHI less than 5 is where the line is drawn for diagnosis of apnea, an AHI of 5.6 means that for all intents and purposes, your airway is essentially already open.
(This post was last modified: 07-29-2015 09:07 PM by TyroneShoes.)
07-29-2015 09:03 PM
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me50 Offline

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Post: #15
RE: Airway and diagnosis
"I've had several surgeries and somnoplasty and tried all the devices, techniques"

I asked earlier what surgeries you have had and what they were for? I am curious what makes you think that MMA will be a success and things get better for you?

Regarding sleep studies, did they check for CA's? Perhaps there is a possibility that you have CA's and need a different machine. We can't know because we don't have enough information.

Do you have your most recent sleep study available to post the info here (be sure and remove personal information).

I wouldn't do this procedure until you have more information. Any surgery is a risk and I would hesitate to get cut on again, especially since there is so much you still don't know.
07-30-2015 12:50 AM
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Terry Offline

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Post: #16
RE: Airway and diagnosis
(07-14-2015 03:25 PM)Paula McCabe Wrote:  xPAP does not keep my airway open and the problem is to the point of disabling me.

If you can breathe while you're awake, I'm not sure how xPAP could fail to prevent the problem when sleeping.

While not a particularly attractive analogy, airways are just floppy plumbing. If your plumbing is collapsing, it's because it's not pressurized enough. If you're simply not breathing (CAs) there are machines that can handle that.

Have you had another sleep study, possibly at a different/better lab with a different doc?

There's no way I'd be going in for surgery until I knew that non-surgical methods simply wouldn't work.
07-30-2015 09:40 AM
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Paula McCabe Offline

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Post: #17
RE: Airway and diagnosis
(07-30-2015 09:40 AM)Terry Wrote:  
(07-14-2015 03:25 PM)Paula McCabe Wrote:  xPAP does not keep my airway open and the problem is to the point of disabling me.

If you can breathe while you're awake, I'm not sure how xPAP could fail to prevent the problem when sleeping.

While not a particularly attractive analogy, airways are just floppy plumbing. If your plumbing is collapsing, it's because it's not pressurized enough. If you're simply not breathing (CAs) there are machines that can handle that.

Have you had another sleep study, possibly at a different/better lab with a different doc?

There's no way I'd be going in for surgery until I knew that non-surgical methods simply wouldn't work.


That makes sense in theory but Dr. Park, said that PAP doesn't always work and can even make things worse (I spoke w/ Dr Park since my post).

I've had probably 10 sleep studies and have seen scores of doctors of varying backgrounds since 1991. I've tried every frontline non-surgical treatment.

Going by the studies, I don't have apnea and I've gotten referred to many other specialists or just sent home. But, finally I had a sleep endoscopy that shows my airway collapsing.

There seems to be a good bit of mystery around apnea, at least with some of the patients, like myself, who fortunately end up in Dr. Park's office. I had some reassurance in him telling me that he sees many, many patients like me who don't show significant apnea.

I wish there were another way but this is going to be the death of me if I don't do something.
(This post was last modified: 07-30-2015 01:12 PM by Paula McCabe.)
07-30-2015 01:09 PM
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Post: #18
RE: Airway and diagnosis
Paula, do you know what your auto BiPAP settings are? I have gotten pretty good relief from the kinds of flow limitations and RERA using the pressure support function, and find it much better than CPAP. I'm just curious what issues you've had with your BiPAP.

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07-30-2015 01:16 PM
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Paula McCabe Offline

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Post: #19
RE: Airway and diagnosis

.pdf  sleep study 2015 blackout.pdf (Size: 136.19 KB / Downloads: 95)
(07-30-2015 12:50 AM)me50 Wrote:  "I've had several surgeries and somnoplasty and tried all the devices, techniques"

I asked earlier what surgeries you have had and what they were for? I am curious what makes you think that MMA will be a success and things get better for you?

Regarding sleep studies, did they check for CA's? Perhaps there is a possibility that you have CA's and need a different machine. We can't know because we don't have enough information.

Do you have your most recent sleep study available to post the info here (be sure and remove personal information).

I wouldn't do this procedure until you have more information. Any surgery is a risk and I would hesitate to get cut on again, especially since there is so much you still don't know.

Thank you for your reply.

In the time since I've posted the question, I had a chance to have it answered by Dr Park who said that I should have had my airway examined while lying down. I've primarily approached this by putting myself in the care of doctors, which has not been ideal but I think that is the best route.

Some of the surgeries have helped markedly but I was still far from cured. MMA is the most effective procedure I know of, outside of tracheostomy. Dr kasey Li, perhaps the most experienced MMA surgeon in the country, only does this procedure for apnea, which tells me something.

I've probably have seen 100 doctors of many types over the past 24 years, have had 10 sleep studies or so, 3 PAP machines, 2 dental appliances, etc., etc. so, I would hope that everything has been covered, including CA.

It seems to me that the biggest problem comes down to one thing in my case regarding diagnosis; my AHI is low. In this sense, sleep studies have been my enemy. However, I've had two sleep endoscopies that have shown airway collapse...in addition to my symptoms and low blood oxygen readings. I also have had marked improvement after 3 of my surgeries and Auto BiPAP but, it's never been more than 50% improvement.

So going over my exhaustive history with fellow patients and partial information may not be the best approach. It could help but I have just not wanted to try to become my own doctor. For one, I don't know what I don't know and the other reason is that if I know more than my doctor, I have the wrong doctor. I know there could be benefit in learning what one can but then again, maybe not.

My approach was to find someone who really, really knew apnea and that person is Dr. Steven Park of Montefiore Hospital in The Bronx, NY. And even with that there are no guarantees but I am dying here. He spent the last 10 years up to his eyeballs in studying apnea,wrote a book, thought outside of the box, podcasts, blogs, etc., etc. That's why I flew to NY to see him.

Apnea is mysterious. Dr. Park has said that airway needs to be seen as a whole and has a holistic approach to diagnosis. For many like me, we fall through the cracks because of low AHI. Dr. Park sees them all the time. What he has said that he has learned over the years is to "treat the patient" and to "listen to the patient". This has not been the attitude of most of the other doctors I've seen. The sleep studies have dictated my diagnosis. So I don't have a lot of hope of straightening out my sleep studies here. Nonetheless, I'll upload my sleep study.

I am curious about CA though. How is that diagnosed?



.pdf  sleep study 2015 blackout.pdf (Size: 136.19 KB / Downloads: 95)
07-30-2015 02:18 PM
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Post: #20
RE: Airway and diagnosis
I also have a question and I will apologize in advance if I missed the answer earlier in the thread. What was the basis for the decision that PAP was not working for you and what pressures were used?

Best Regards,

PaytonA
07-30-2015 03:33 PM
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