UARS Sleep Endoscopy (Video Included)

Hi all. Haven't been on here in a while. After months of trialing CPAP/APAP/BIPAP/ASV without success, I decided to get a sleep endoscopy to see where narrowing was occurring in my airway. So I could guide a surgical procedure.

I flew to Eric Kezirian to have him to a sleep endoscopy on me. He sent me the video within an hour or two after the procedure and I spoke to him the other day about his findings. The video is below.

https://youtu.be/1jsy3swkUx0

At the 1:00 to 1:45 mark, I am on my side. You can see the windpipe above epiglottis (U-shaped structure) and how narrow it gets on inspiration. The bumpy structure is the lingual tonsil/tongue base.

At 2:00 - 2:30, still on my side. They move up to the soft palate. Dr. K believes there is no significant obstruction occurring here.

At 5:00 forward, I'm on my back. Once again, soft palate is OK, but the airway is narrowed by the lingual tonsils.

At 6:40 - 7:10, my epiglottis collapses back to block the airway entirely several times.


Dr. K concluded that removing the lingual tonsils should be enough to open up my airway. His procedure will result in the epiglottis sort of stiffening forward, so it shouldn't be an issue and we shouldn't have to touch it.

Just wanted to leave this here in case it helps anyone.

mangos21 wrote: ↑

Tue Mar 06, 2018 9:43 am

. . . Dr. K concluded that removing the lingual tonsils should be enough to open up my airway. His procedure will result in the epiglottis sort of stiffening forward, so it shouldn't be an issue and we shouldn't have to touch it. . . .

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mangos21 wrote: ↑

Tue Mar 06, 2018 9:43 am

. . . to see where narrowing was occurring in my airway. So I could guide a surgical procedure. . . .

It's an idea many have had. However, what a number have found is that when the narrowing is corrected at one location, then the narrowing starts occurring in another location or locations. OSA and related issues are rarely, other than in the case of anatomical abnormalities such as tumors, a condition of one location in the airway. Finding what location it happens to occur first on one night is sometimes useful information, yes. But basing a surgery on it can still be an iffy proposition, I believe. Most ENTs know this, but they don't always express the low odds in a clear way to the patient, and some patients don't become informed enough to understand how much pain they will endure for that roll of the dice. UARS is a bit of a different beast from your average OSA. But it generally involves sensitivity in the airway and nervous system, not so much actual closure, as I understand it. It doesn't take much narrowing to trigger sleep disturbances for many of those patients, so if any narrowing of any sort is happening anywhere else other than just the primary area of narrowing, fixing the narrowing in that one area of the airway may be unlikely to fix the deeper mechanism of UARS. And different parts of the airway can be more likely to narrow during different stages of sleep, even, from what I understand.

I have heard ENT surgeons themselves downplay the usefulness of scoping the airway for the average OSA/UARS patient other than ruling out rare growths/tumors that are the exception. Those ENTs are conservative ENTs, yes. And I would never discourage anyone from trying something that multiple reputable ENTs suggest based on that one person's anatomy/condition. However, I make this post as a note of caution, since hope can sometimes blind us to low likelihood of success if we aren't careful. All of us. We need our eyes to be as open as our airways.

After all, ENTs generally don't put their money where their mouth is. Or where our mouth is. Surgeons tend to score temporary slight improvement as a success. Patients don't generally look at it quite that way. And we as patients take ALL the risk. So we have to know fully and weigh fully what the risk-benefit ratio is for the general population and the multiple estimates for us personally. Knowing where the narrowing occurs does not, in my opinion, increase the odds of success for the average patient. I have no medical expertise in the area, and I have no letters in front of or after my name at all, but I have spoken with some who do on similar subjects.

And I didn't watch the video, although I did manage to stomach some similar videos during some lectures.

All that said, I wish you complete success.

indeed you are correct that we must be very careful. i haven't pulled the trigger to go ahead with the surgery just yet as i will probably show the video to a few other doctors and see what their thoughts are. weight loss might help a fair bit for me as well.

Unfortunately, PAP therapies do not work for me, so weight loss and surgery are essentially my options. I think the nervous system gets disturbed too much by the airflow. I did have a tonsillectomy about a year and a half ago with sustained benefits and no side effects.

(1) Straight CPAP (2) with NO pressure relief (3) at a higher pressure than what fixes AHI is sometimes the only form of PAP that provides relief to the sensitive-airway types, I believe, as it can sometimes hold the airway as perfectly still as possible. And it can (4) take months for the brain to get used to and tune out the equipment for some. And those months of worse sleep as the brain adapts, if it can, can be a gamble in and of itself that may not pay off either. So I certainly get the desire for another solution. UARS can be a real beast to tame. I am glad you are in a position to speak directly with some docs about it, hopefully some with a lot of experience with it. And if you were willing to do an adult tonsillectomy, you are already braver than I am! You deserve some relief. Hope you find it. Thanks for your post, vid, and interesting story. Educational for us all.

jnk... wrote: ↑

Tue Mar 06, 2018 10:46 am

(1) Straight CPAP (2) with NO pressure relief (3) at a higher pressure than what fixes AHI is sometimes the only form of PAP that provides relief to the sensitive-airway types, I believe, as it can sometimes hold the airway as perfectly still as possible. And it can (4) take months for the brain to get used to and tune out the equipment for some. And those months of worse sleep as the brain adapts, if it can, can be a gamble in and of itself that may not pay off either. So I certainly get the desire for another solution. UARS can be a real beast to tame. I am glad you are in a position to speak directly with some docs about it, hopefully some with a lot of experience with it. And if you were willing to do an adult tonsillectomy, you are already braver than I am! You deserve some relief. Hope you find it. Thanks for your post, vid, and interesting story. Educational for us all.

JNK, I thought that ASV was recommended for UARS most frequently.

I admit to being somewhat confused here. When you say "sensitive airway" are you talking about a low arousal threshold rather than UARS? I find this interesting and so just want to learn more here.

Question: Have you ever tried a few weeks of using one of the nasal corticosteroids, like Flonase?

Arlene1963 wrote: ↑

Tue Mar 06, 2018 11:08 am

jnk... wrote: ↑

Tue Mar 06, 2018 10:46 am

(1) Straight CPAP (2) with NO pressure relief (3) at a higher pressure than what fixes AHI is sometimes the only form of PAP that provides relief to the sensitive-airway types, I believe, as it can sometimes hold the airway as perfectly still as possible. And it can (4) take months for the brain to get used to and tune out the equipment for some. And those months of worse sleep as the brain adapts, if it can, can be a gamble in and of itself that may not pay off either. So I certainly get the desire for another solution. UARS can be a real beast to tame. I am glad you are in a position to speak directly with some docs about it, hopefully some with a lot of experience with it. And if you were willing to do an adult tonsillectomy, you are already braver than I am! You deserve some relief. Hope you find it. Thanks for your post, vid, and interesting story. Educational for us all.

JNK, I thought that ASV was recommended for UARS most frequently.

I admit to being somewhat confused here. When you say "sensitive airway" are you talking about a low arousal threshold rather than UARS? I find this interesting and so just want to learn more here.

AFAIK, Krakow is the only one that recommends ASV for UARS. I've read of some posters on this board having success with ASV for UARS, and others who have not had any success.

Others have had success with straight cpap and bipap.

jnk... wrote: ↑

Tue Mar 06, 2018 11:11 am

Question: Have you ever tried a few weeks of using one of the nasal corticosteroids, like Flonase?

I have, yes. It made no difference for me. I generally breathe pretty well through my nose, even with some mild congestion year-round.

Arlene1963 wrote: ↑

Tue Mar 06, 2018 11:08 am

jnk... wrote: ↑

Tue Mar 06, 2018 10:46 am

(1) Straight CPAP (2) with NO pressure relief (3) at a higher pressure than what fixes AHI is sometimes the only form of PAP that provides relief to the sensitive-airway types, I believe, as it can sometimes hold the airway as perfectly still as possible. And it can (4) take months for the brain to get used to and tune out the equipment for some. And those months of worse sleep as the brain adapts, if it can, can be a gamble in and of itself that may not pay off either. So I certainly get the desire for another solution. UARS can be a real beast to tame. I am glad you are in a position to speak directly with some docs about it, hopefully some with a lot of experience with it. And if you were willing to do an adult tonsillectomy, you are already braver than I am! You deserve some relief. Hope you find it. Thanks for your post, vid, and interesting story. Educational for us all.

JNK, I thought that ASV was recommended for UARS most frequently.

I admit to being somewhat confused here. When you say "sensitive airway" are you talking about a low arousal threshold rather than UARS? I find this interesting and so just want to learn more here.

Krakow is using the ASV off-label when he uses it for UARS, I believe. It is discussed a lot on the boards, but still isn't mainstream, as far as I know. ASV appears to come in handy for some with UARS by allowing some to adapt to pressure more comfortably, when the machine is set up carefully for them--thus, I assume, Krakow's preference for the comfort of the ResMed version. The theory, I think, is that keeping breathing in a more regular rhythm and depth can have a calming effect on the nervous system for some, once they adapt to what the machine is doing. I don't get that, myself, since ASV can also kick like a mule in some circumstances. And then there are theories now about central aspects to the cause of some obstructive events, which may also explain some ASV benefits for UARS patients. But that's over my head right now. Hey, that's why Krakow's people get the big bucks.

UARS, according to one working theory, is all about sleep getting disturbed by less-than-AHI "events." The slightest change in the airway causes arousal. In that sense, some view it as the flip side of classic OSA, in which changes in the airway are basically ignored by the nervous system after a while. So one model differentiating the two is that OSA is about the nervous system trying to sacrifice breathing in an attempt to improve sleep, whereas UARS is more about the nervous system trying to sacrifice sleep in order to try to improve its sleep-breathing. Obviously, both attempted solutions to SDB by the nervous system can cause problems. But OSA can be viewed as a problem of a deadened reflex in the airway, and UARS can be viewed as a problem of an overly-sensitive airway reflex. That's what I was referring to.

Not everyone buys into that model. And it is possible to have a bit of both problems rolled into one. But the lines between the two have been especially blurred of late because payers prefer to consider it all under one blanket definition for OSA. Which is why cutting-edge docs like Krakow have to play along and then cook their numbers a bit to please the payers and help patients at the same time. Put your office up in the clouds, and most anyone can qualify for ASV, which can sometimes be helpful to a certain subset of UARS people and people with airways that are still trying to give priority to breathing during sleep rather than trying to preserve some consolidation of sleep staging as best it can.

That, as any discussion of UARS, is an oversimplification, of course. But that's at least one way of looking at it all in a way that frames the issues and still provides some handles and labels for finding ways to help people.