Post-Surgery Blues: Scoring Question

[BrianinTN]

Hi folks!

It's been a while! Many of you may remember me from my (many, many) iterations on CPAP, BiPAP, and ASV over the past few years. Since my life led me to the Bay area, and I always felt worse after nights on positive airway pressure than I did without, I bit the bullet and opted for surgery this past summer at Stanford. I knew that despite being an ideal patient (I'm in my low 30s, not too overweight, and still had my large tonsils), the odds of success -- and especially long-term success -- weren't in my favor, but I felt little choice. The procedures were a tonsillectomy, a lingual tonsillectomy, a base of tongue reduction, and a UPPP. (I was pretty uncomfortable with the UPPP, but the doc promised to keep it super conservative.)

Well, I finally got my post-op sleep study. And lo and behold, my AHI has gone from around 36 (where it was in my diagnostic study in the middle of 2010) to....66.

My main questions at this point are:
1) Given the subjectivity in scoring, and that I had this sleep study at Stanford (versus a different facility for my previous four), how confident should I be that things have actually "worsened"?
2) Given that the reason I resorted to surgery was poor tolerance of PAP therapy (I really did spend 18 months trying to make it work -- this isn't me saying "I don't like wearing a mask), are there any other alternatives any of you can think of at this point? Similar experiences?

I'm not expecting great answers here, but figured I'd at least check in, say hi, and hope that my tale might be useful to someone searching the forums in the future.

[Xney]

I'm not a doctor, but given the time between tests, and the fact that they can vary a bit, I'm not sure you can say it's worse. It could be, but it's only "could" in my opinion.

Did the mix of events change? mostly obstructive apneas, hypopneas, centrals... ?

[BrianinTN]

Did the mix of events change? mostly obstructive apneas, hypopneas, centrals... ?

Some. The original diagnostic showed 12% obstructive, 3% centrals, 5% mixed, and 80% hypopneas. This one shows 21% obstructive, 24% centrals, 4% mixed, and 50% hypopneas.

[Xney]

Hmm I guess most of your increase might have been from obstructive and central apneas, hypops might be the same.

Pretty odd after surgery that it didn't even go down, but I don't really know what's normal. Isn't the jaw advancement thing the one stanford does a lot?

[SleepingUgly]

1) Given the subjectivity in scoring, and that I had this sleep study at Stanford (versus a different facility for my previous four), how confident should I be that things have actually "worsened"?

I would have ZERO confidence that things have worsened. For one thing, there is night to night variability even within the same lab. Secondly, Stanford is known for their liberal scoring of SDB.

2) Given that the reason I resorted to surgery was poor tolerance of PAP therapy (I really did spend 18 months trying to make it work -- this isn't me saying "I don't like wearing a mask), are there any other alternatives any of you can think of at this point? Similar experiences?

I don't know what your issues with PAP were specifically and which PAP devices you tried. If you tolerated PAP just fine, but your daytime symptoms remained problematic, that is a different story than if you did not tolerate CPAP. If you didn't tolerate PAP, I would say you have a much better chance of tolerating it now that you've had those surgeries, particularly the nasal surgeries.

Please remind me what your problems were.

[BrianinTN]

I could never sleep restfully on any of the PAP devices -- despite truly giving it my best effort. I would wake up countless times throughout the night, often struggling to get the requisite 4+ hours of sleep in. In the morning, I would feel worse than if I weren't using PAP therapy at all. (It wasn't just a persistence of daytime sleepiness; it was a worsening of it.) In particular, when they put me on the BiPAP S/T (and I believe over-titrated me), I felt like I had been hit by an 18 wheeler all day.

I felt the "best" when I was on an ASV with a min EPAP of 4 or just a bit above it, but even then, I would feel worse on days after using it than on days when I didn't. So, after close to two years of four sleep studies and three PAP devices, I ultimately gave up the ghost and waited until I would be in a position to give surgery a shot.

[SleepingUgly]

Well, if you still have the ASV, you could try it out again and see how you feel. Surgery may have made it more tolerable and perhaps having less gear-related sleep interruptions may allow you to reap some benefit from it. Anyway, if you have the gear, it's worth a shot.

The only other options that are viable, IMO are: More surgery (bad option, IMO), Mandibular Advancement Devices, the new Winx that is coming out, Provent, hmmm...

[phoebe368]

I've always been very wary of this surgery. Very few people have had their apnea events fully resolved and many have had complications. Also, cpap is more difficult to use afterwards. I've also heard of several instances where AHI worsened after UPPP surgery even when performed at Stanford. I have enclosed a link to Andrew's OSA Diary. He too had UPPP surgery at Stanford which resulted in a worsening of his apnea. It's quite long but for a quick summary read the conclusions section at the bottom. Overaggressive removal of tissue can result in scar tissue formation causing stenosis - a narrowing of the airway, causing a worsening of sleep apnea.

http://www.osadiary.com/

[BrianinTN]

Yeah, I was pretty cognizant of all the risks going in, which is why I requested that the surgeon be especially conservative with the UPPP procedure. I would say that his work, from a pure surgical perspective, was good. The stitching was clean, and I healed up nicely. I also had a minimum of pain -- which, given the horror stories, was a pleasant surprise. I did have some swelling, which kept me in the hospital for a few extra days, but I actually think that was a blessing in disguise. A few days of intake via IVs meant less stuff being jammed down that fresh tissue, and I can't help but wonder if my smooth recovery was in part due to that fact.

I may give the CPAP another try at home first. I don't really see the point in going in for a 6th sleep study to do a titration if I'm ultimately going to be unable to tolerate PAP therapy. I'm pretty against further surgery. Mandibular advancement surgery, while it sounds like it can be effective, also sounds like sheer hell. On the MAD side, I know that insurance will rarely pick up the tab for severe apnea (which my 66 AHI definitely would be) because it tends only to improve apnea but not deal with most or all of it, so that's out. I'll poke at Provent and Winx -- thanks for those suggestions!

[Xney]

Hard to imagine Provent working with an AHI of 66? But I guess anything is possible. I'm testing out the Winx myself, as you can see from my posts if you do a search. I wonder if a UPPP will interfere with the Winx - it depends on soft tissue sealing the mouth.

It took me a bit over 12 months to really use xPAP, so I feel your pain. I just wish it worked for me all the way, for all the effort into getting it dialed in. For most people, it would have, but there you go.

[BrianinTN]

As an aside, the writup refers to my centrals as not being of the Chenye-Stokes variety, but "are most probably related to a blunting response to CO2 and may improve [in] 3 to 4 months." I'm familiar with the C-S patterns, but the language on this last part is foreign to me. Any tips on translating this into English?

[mollete]

Given the subjectivity in scoring...

Scoring is not subjective. Scorers must follow "Da Rules", which are objective criteria.

Secondly, Stanford is known for their liberal scoring of SDB.

Oh really? Who sez?

I'm not expecting great answers here, but figured I'd at least check in, say hi, and hope that my tale might be useful to someone searching the forums in the future.

Well, based on your previous thread:

viewtopic.php?f=1&t=63954&st=0&sk=t&sd=a

I believe we can now add:

YOU CAN'T FIX BAD SLEEP WITH SURGERY!!!
YOU CAN'T FIX BAD SLEEP WITH SURGERY!!!
YOU CAN'T FIX BAD SLEEP WITH SURGERY!!!
YOU CAN'T FIX BAD SLEEP WITH SURGERY!!!
YOU CAN'T FIX BAD SLEEP WITH SURGERY!!!
YOU CAN'T FIX BAD SLEEP WITH SURGERY!!!
YOU CAN'T FIX BAD SLEEP WITH SURGERY!!!

[archangle]

Get the full study report if you haven't already.

What kind of O2 results did you get during the sleep study?

What CPAP machine do you have? Try it and see what AHI it shows you.

I doubt "liberal scoring" is going to show AHI of 66 if you don't have it bad.

How recently were you using CPAP? I wouldn't be surprised if a person who's been doing CPAP showed increased AHI for a while after stopping CPAP.

How long are your apneas/hypopneas? Have you tried O2 while sleeping?

As an aside, the writup refers to my centrals as not being of the Chenye-Stokes variety, but "are most probably related to a blunting response to CO2 and may improve [in] 3 to 4 months." I'm familiar with the C-S patterns, but the language on this last part is foreign to me. Any tips on translating this into English?

CO2 in your lungs and blood increases your desire to breathe. Sounds like they're saying that for some reason, your body and brain aren't reacting as much to CO2 as they would "normally." Maybe they think past CPAP use may have "blunted" your response, or it's some sort of aftereffect of the surgery.

[49er]

Brian in Tenn,

My heart goes out to you.

In briefly glancing at your previous thread, I noticed you had taken various psych and sleep meds. As one who has tried very nearly a year to adjust to my machine to no avail, I have wondered if being on psych meds for years before I got off of them has caused me to be cpap intolerant.

Of course, I will never be able to prove it but I wonder if that as an issue for you. And by the way, an ENT I saw yesterday, said that ambien is horrible for sleep apnea.

People act like when we fail it is because of our attitude. They don't see the heartbreak that we go through to try to make this work.

While personally, I wouldn't have undertaken the surgeries you went through even if I did have health insurance, I totally understand why you did what you did. It is hard to function without quality sleep so it leads us to decisions that in retrospect might not have been the wisest course of action.

I wish you well.

49er

[SleepingUgly]

Given the subjectivity in scoring...

Scoring is not subjective. Scorers must follow "Da Rules", which are objective criteria.

Well, as you know, technically there are two "rules" about scoring hypopneas, which can make a great difference to the overall AHI.

http://www.ncbi.nlm.nih.gov/pubmed/19238801

My own doctor says interrater reliability in scoring arousals is pretty poor, and while I have no proof, I would bet my bottom dollar that a Stanford technician relative to say a Connecticut technician are going to get VERY poor interrater reliability.

Secondly, Stanford is known for their liberal scoring of SDB.

Oh really? Who sez?

There's an article about this in terms of scoring children's SDB. I'm rushing now, but if you're truly interested, I will search for it again. You may be able to find it by googling. It's by Dr. Guilleminault in which he basically says that the "rules" for scoring SDB in children are wrong and when scored by the Stanford rules, something like 99% of the kids in their study had SDB compared to a much, much lower percentage using the "rules".

While that doesn't speak to Stanford using non-"rules" rules to score adults, I am still confident in my opinion that SDB is far more likely to be detected (i.e., scored) at Stanford than elsewhere, and that Stanford AHIs will be higher relative to other centers.