Underwent Modified UPPP & Tongue Coblation

[Simpy]

Hi, all

Seven weeks ago, I underwent modified UPPP and tongue coblation surgery to fix my sleep apnea. Previous to that (6 months prior), I had a septoplasty to open up one side of my nose was blocked.

Initial results from the uppp/tongue coblation were positive: from weeks 3-6 or so, I was like a different person. Sleeping 7 hours, waking up feeling *so* good, etc. Unfortunately, it hasn't lasted.

For the last week now, I have returned to my old self: struggle to get up, sleeping 10+ hours to compensate, etc. As such, I'm going back on my CPAP machine to see if it makes a difference (unfortunately, CPAP failed for me before: I needed quite high pressure (14+) and I still slept 10+ hours).

I'm having another sleep study in January to see what effect (if any) the surgery has had on my AHI (was about 33 last year when I was diagnosed).

I'm just wondering if anyone else has been through a similar experience? I'm only 28 (fit, healthy, etc), so I really wanted to get off CPAP, but it seems like I don't have a choice again—at least until I review my new sleep study with my ENT and discuss my options.

Any thoughts/comments would be welcome. It's been incredibly depressing thinking I was cured and living normally for several weeks only for this to recur. In itself it baffles me: how can something like that work and then just not work? Maybe it wasn't the whole time and it was placebo? Who knows.

At this point, it seems like, if CPAP doesn't work for me again, my only option left is MMA surgery with all the risks (numbness in particular bothers me) that entails. But I don't think I can live on CPAP for the rest of my life; again, though, maybe it will be better this time.

[jnk...]

Unfortunately some surgeries can be a bit of a toss of the dice. It may be that the location of the airway colapse shifted lower or that the gradual decrease in swelling changed things.

Let the members of this forum form a support team to help make sure PAP can work for you this time. The experiences of fellow patients tossing ideas out to you may help make this time different from last time.

[Wulfman...]

You might want to read this thread........and maybe add your comments/experiences at the end.

viewtopic/t109221/My-sleep-apnea-cured.html

This is a link to a forum Search on "UPPP". Lots of similar experiences in there, too.

viewtopic/t109362/search.php?keywords=UPPP


Den

.

[Goofproof]

Just my observations, not that many will admit! XPAP failure rate is about 50%, but of that number XPAP doesn't fail the 50 %, about 40% of those that fail, fail for their own reasons, mostly the inability to follow thru with anything that requires effort or sacrifice however mild. Jim

"Can't, has Never Accomplished anything Worthwhile!"

[Simpy]

Unfortunately some surgeries can be a bit of a toss of the dice. It may be that the location of the airway colapse shifted lower or that the gradual decrease in swelling changed things.

Let the members of this forum form a support team to help make sure PAP can work for you this time. The experiences of fellow patients tossing ideas out to you may help make this time different from last time.

Yeah that's what I'm thinking. The doctor was quite explicit in saying the surgery might not fix it, but it's still a disappointment.

And I was fully compliant with CPAP - using it was not the problem. It just wasn't effective in enhancing my sleep.

[Goofproof]

You may have been in that 10%, that it won't work for, not saying you are not. Just stating many in that 50% failure class could have been better treated, if they had had a little fortitude, and the ability to read and think and care about getting XPAP to work.

XPAP, won't work until you get it set up correctly, and then use it all the time. Wrong pressures and leaks, wrong kind of mask (mouthbreathing), you can't call that treatment. It's like going to the drug store, buying heart meds, and pouring every other days meds down the drain, and complaining your heart races.

There are rules you need to follow to get the correct results in life. Many times the people that are put in charge of informing you, dont, won't or cant. Sometimes they do their jobs correctly, but we ignore them. Jim

[Jay Aitchsee]

Hello Simpy,
Sorry it appears your surgery didn't work. You mentioned going back on CPAP. Have you? If so, how do your flow limitations look compared to those you posted in February prior to surgery which looked fairly severe?
I've never had surgery, but two things that I have done (besides increasing pressure) which reduced flow limitations were: 1, wear a soft cervical collar and 2, switch to a nasal pillow mask (aisrsense P10).
You might want to try the cervical collar. It could be used without cpap. See if you can find one that is comfortable, soft not rigid, something like this: http://www.amazon.com/gp/product/B000FZ ... detailpage I found shorter was better than taller as well as one that was sized to my approximate neck circumference to prevent a big bunch in the back.
If you do have to go back on CPAP you may want to try the nasal pillow mask, perhaps the surgeries have alleviated the congestion issues your experienced previously.

[Too tall]

Unfortunately some surgeries can be a bit of a toss of the dice. It may be that the location of the airway colapse shifted lower or that the gradual decrease in swelling changed things.

Let the members of this forum form a support team to help make sure PAP can work for you this time. The experiences of fellow patients tossing ideas out to you may help make this time different from last time.

Yeah that's what I'm thinking. The doctor was quite explicit in saying the surgery might not fix it, but it's still a disappointment.

And I was fully compliant with CPAP - using it was not the problem. It just wasn't effective in enhancing my sleep.

Yea, pretty much my story with the CPAP. I just had the surgery. I think sometimes the tongue requires a follow up treatment. Have you been back to the ENT to get his/ her opinion.

[archangle]

Don't give up. It might be something temporary, or you might be improved if not cured. Maybe CPAP will work better for you now.

Do you use SleepyHead or ResScan to monitor your results? What was your AHI before surgery? Let us know your post-op AHI once you get some data.

[Simpy]

Hi, all

Thanks for the responses.

Jay: Yeah, I have a soft cervical collar thing I tried before my surgery and it didn't really seem to do anything. The doctor advised it probably wouldn't, but I wanted to try. I might give it another go now.

I use a full face mask: my nose is fine now, but the nasal masks I like leaks too much because I knock it too much when sleeping. The bulkier face mask stays on better and doesn't interrupt me through the night. I've tried nasal pillows and hated them, so I use a face mask I like.

As for my CPAP results: I slept with cpap last night. I've put up pictures from February before I had my surgeries and from last night so you can get a sense of the changes.

FEB: (Pressure: 17)
Feb 1: http://i.imgur.com/TNT7sgv.jpg
Feb 2: http://i.imgur.com/6vMzDmx.jpg
Feb 3: http://i.imgur.com/wTHxYG0.jpg

DEC: (Pressure: APAP 5-16; stayed around 12-15)
Dec 1: http://i.imgur.com/5w7QGWn.jpg
Dec 2: http://i.imgur.com/pomG19R.jpg
Dec 3: http://i.imgur.com/eBv5TD3.jpg

The flow limitations are a little bit better (though these fluctuate a bit from night to night, but the one I put up from February is about average I'd say).

What I find most interesting is that my breathing (flow) is still very shallow with quite a few central sleep apneas. I just stop trying to breathe: with my already shallow breathing, I must have horrible oxygen levels.

While the flow limitations aren't perfect, I feel like a primary cause of my problem might be central sleep apnea. I have a proper sleep study in January, so that should be illuminating at least.

What I have learnt from last night, however, is that it doesn't seem like CPAP made any difference. In fact, I think I felt better all this week not using it (or about the same: better is probably a stretch, but just better by the smallest of margins). That also indicates to me maybe something more is going on that the CPAP can't fix.

Archangel: I forgot to mention: my AHI has always been consistently 1-3 or below. The AHI numbers I have always achieved are very good.

[Jay Aitchsee]

Simpy, I understand your concern. It looks like you have a lot of CSA events. But, looking the total number vs hours slept, I'm guessing your AHI is only around 2.0, actually not too bad. Also, I'm not sure your breathing (flow) is all that suppressed. Could be just a matter of scale. The graph limits are +/- 250 which tends to make the waveforms look small. In the example you've shown, it looks like the flow rate min is still up around 10L/min or so.
Hard to tell about the CSA events. They could be actual or just disturbances where you've moved, or rolled over or something, and caught your breath for a few seconds. It looks to me as if you missed the actual events in the navigation panel so that they're not shown in the detail panel. Sometimes, the start of an event can provide a clue. For example, a few deep breaths just prior to the event could signal a disturbance rather than an actual CSA. In looking at the 10 hour flow detail (DEC 1), it does look like a number of events coincide with a sharp increase in flow rate. However, It will probably take a lab setting to determine for sure.
I think your Flow limitations are still a bit high, though it may not matter. Some here have suggested that anything over .04 is worrisome and many of yours would seem to exceed that, but I'm not sure there's much agreement as to the effect, even if they are high. There is very little evidence of obstructive events, except for the Flow limitations and some snores which seems to be the driver of your auto pressure. It is possible the pressure fluctuations are disturbing, but it doesn't really look like it. But to rule that out, you might want to try a constant pressure around 9, or so.
As you say, it is possible you have something going on that cpap can't fix. Did your last sleep study mention any disturbances due to PLMD? If you have bed partner, have they mentioned any unusual leg movements or thrashing? How about sleep hygiene, and/or caffeine use, or Meds?
Maybe we can get someone else to chime in with their thoughts.

[Too tall]

I'm told by the sleep doctor that it's impossible to detect CA with just CPAP data. They say you need to be hooked up to all the sensors to the head etc..

[Pugsy]

I'm told by the sleep doctor that it's impossible to detect CA with just CPAP data. They say you need to be hooked up to all the sensors to the head etc..

Well I bet that the machine manufacturers might disagree with your doctor's statement.
Here's one manufacturer's documentation on how reliable their central detection is.
http://www.resmed.com/fr/assets/documen ... -paper.pdf
I imagine Respironics has similar findings.
They didn't just pull this central detection stuff out of their behinds. Lots of research went on behind the scenes.

Sensors on the head are usually for documenting sleep stages and not necessarily whether an apnea event is central or obstructive.

[archangle]

I'm told by the sleep doctor that it's impossible to detect CA with just CPAP data. They say you need to be hooked up to all the sensors to the head etc..

Your doc is an idiot.

It's not 100%, but pretty much if the CPAP says CA, it's a CA. It may flag some CA's as obstructive, but they can do a pretty good job with detecting CA's.

You may not show your normal breathing problems when you are in a lab, in a strange bed, nervous, with wires all over you, sleeping badly, perhaps not in your normal sleep position, sleeping badly, etc. Even if the CPAP machine isn't as "accurate" in some sense, it's not measuring your "real" sleep pattern.

The other thing a CPAP machine can't do is tell if you're asleep, and some people show "false" apneas if they're awake.

[Jay Aitchsee]

I think the machines, as Pugsy and Archangle point out above, do a pretty good job of distinguishing between open airway apneas (CSA) and closed airway apneas (OSA), however, I think it should be said that experiencing some CSA events is probably normal and not cause for any alarm. One of the shortcomings of our machines is not the ability to detect a CSA but to detect when an event occurs in aroused or wake sleep stage, in which case, it is not technically an event. This causes many concerned posts here by people who see a number of CSA events, usually in the early morning, which are mostly like occurring as they are drifting in and out of sleep. Events which occur when drifting in and out of sleep are sometimes referred to as SWJ (Sleep-Wake-Junk) and would not be counted in a lab. Likewise for events that occur at other times during the night when the patient has been aroused or awakened prior to the event.