Talk me into or out of surgery

[BoxcarPete]

I've been trying to make this CPAP thing work for about a month now, after three years of treatment methods for my apnea which were insufficient and/or came with too many side effects. I was full steam ahead on trying to make the CPAP a long term solution, and one of the things I figured was worth doing was to swing by an ENT doc who's also a sleep specialist so he could take a look and point me in the right direction.

The diagnosis?
- Deviated septum, left and right
- Enlarged turbinates, left and right
- Enlarged adenoids, left and right

He also made some other observations that he didn't tell me much about, because he feels that they are secondary to the problems above. He told me "fix the nose, and the other stuff will get better, too." I asked a thousand questions about mouth breathing, under-ventilation, palatal prolapse, etc. and that was consistently his response. He was very clear not to make it a promise, but expected that there's a real chance that if he goes in and cleans that all up, I may be able to get off PAP completely with no apnea. He was quite confident that if I still needed it, the road would be much smoother in terms of pressure requirements, use of a nasal mask, or that a proper sleep dentist could do a lot more than make me a bite guard. That's where the "other observations" come in, there's more stuff he noticed that is outside his specialty to fix, and in his opinion fixing the amount of crap going on in the nose is the first step regardless.

So, I'm just looking for a sanity check. I want to avoid rushing into the decision, while at the same time the clock is ticking on 2023 and if we want to get insurance involved it needs to happen before end of year. I got a steroid shot at the office, and Fluticasone spray (which I understand to be similar to Flonase) to use at home, with the full expectation that it will not be a suitable long-term solution. It's not. Just need to check the box that we tried something non-surgical first so insurance will pay. Don't you love our health system?

[gainerfull]

What problem with your sleep are you trying to solve specifically? I don't remember your sleep data off the top of my head precisely but do remember it being relatively decent.

Maybe it's just because it's the internet but I don't see many people sharing their experience that surgery met their expectations.

[BoxcarPete]

Relatively decent is not incorrect. I can expect an AHI of 0.8-2.5 on most nights. 95% flow limit somewhere around 0.07-0.10. Looks OK from an outside observer, but I can tell you that my sleep is not fixed.

The nasal pillows are comfortable and easy to use, but I get woken up repeatedly by the mouth breathing, which doesn't show up in the stats. FFM helps with that to some extent, but my charts look absolutely horrible when sleeping on my back, hypopnea and RERA all over the place, and it's not comfortable to me to sleep on my side with the FFM, so I usually end up on my back at some point anyway.

One major consideration is the hassle of it all. With nasal pillows it's not too horrible to yank off my head and go calm a crying kid (5, 3, and 1 year old in the house), but the FFM is just too damn fiddly to do that. If it happens more than once or twice in a night, I drag my feet till the wife gets upset that I'm not doing anything about the kid and gets up herself to go, and that is a real consideration for me. She has a hard time falling back asleep if she gets out of bed, but historically I have been snoring away after dealing with the kid before she falls back asleep even if she doesn't move a muscle. It's harder for me to fall back asleep with FFM as well.

So here I am, on the young side, generally healthy, with a seemingly obvious and correctable source for the majority of my troubles. I've seen plenty of people on the internet claiming that the surgery changed their life, but there are also the folks who had it go wrong and make things worse. I think the latter are more likely to be vocal on the internet about it. I read through over 200 reviews for this doc in particular, 5 stars across the board except for a handful of 1 star people who got told their problem may be related to something other than what they thought it was* and sound like they're unappeasable anyhow. Not a single septoplasty or turbinate reduction horror story from this guy that I could find.

*Several who got told to take a hearing test they thought they didn't need, and a handful more who got told their dizziness was likely ocular and didn't want expensive prism glasses to fix the focal dysfunction. A bunch of others were grateful for the tip, and found their prism glasses to be lifechanging.

[SarcasticDave94]

Anti-sarcastic answer: there’s been others over the years that did some corrective surgery to skip CPAP only to need it anyway.

Part of the issue is going to the ENT sleep specialist is that they’re most likely going to sell you their “service”. This service is how they make money.

I use car analogies a lot. If you’re shopping for a truck, Ford, RAM, Chevy will attempt to sell you theirs as the best answer. Sometimes we as patients that need answers prime the doctor to give a certain, slanted solution, one that benefits them more than yourself. Describing symptoms, ailments, your goals or actions, even possible solutions can sometims slant their answer. Again the car thing, if you go to a mechanic and say I think the brakes are making noise. Less than honest mechanics may find yes you need brakes, because you primed them with the answer. Maybe better is to say “there’s a noise, any ideas what it is and how to fix it?”.

Did the priming with the ENT sleep specialist take place? Not certain, however it could have been done inadvertently.

If the past tells anything about this surgery to replace CPAP scenerio, it’ll possibly be you do an expensive and painful corrective surgery that may have actually opposed your best interest and needs. Patients that go through this might end up with CPAP anyway after the healing from the surgery.

I honestly don’t know if this scenario is correct, but it’s been played here fairly regularly to give evidence it does in fact happen.

[Jay51]

My 2cents Pete.  I had the deviated septum surgery about a month ago with inferior turbinate reduction also.  I am glad I did it.  Much better nasal breathing.  My left nostril used to completely clog during the night.  Not any more.  Not that much of a difference as far as congestion, but larger airway, more volume of air through my nose (less of a need to use my mouth for breathing). And insurance picked up the tab.  I did my own personal calculations and it looked like a low risk and medium or so or even more reward scenario.  Even if it was a push, insurance paid for it.  I am very grateful I had it done.  

So how to you know it is helping your breathing?  I am going by feel, but I plan on taking some naps with my "new nose" using my s9 adapt asv and comparing them to older naps I took pre-surgery to see if any numbers changed significantly.  I still continue to use my ventilator though.  I personally moved from back to side sleeping and now sleep on a 45 degree upper body wedge (36" x 36") at night to let gravity help my breathing that much more.  And I use a collar also.  

The 1st couple of days after surgery were pretty rough.  I will not lie, but things are much better today IMO.  The surgery your are describing sounds pretty low risk with either low reward, medium reward, or high reward. Getting rid of the adenoids should provide more breathing space. This surgery is about increasing space and decreasing resistance IMO.  Right now mine would probably be low risk: medium reward.  It could turn out to be low risk: high reward if my OSCAR naps with the "new nose" show significantly improved results.  I wish you well Pete. Any specific questions just ask.

[paulag1955]

Is he proposing to correct all three issues with one surgery?

[gainerfull]

Agree with Dave, although the cpap / bilevel can be a hassle I think you'd be disappointed if you expect the surgeries to allow you sleep soundly without cpap.

Could it make it easier for you to get good sleep w/ cpap or bilevel? Sure.

It seems like the ENT you're considering has overwhelmingly good reviews so what does your gut say? Does he seem confident? Knowledgeable? Good bedside manner? Has your best interests in mind? If so, that's all that really matters in the end. You can find people online that will argue the sky isn't blue ...

[BoxcarPete]

Thanks for all the feedback so far.

Dave: It's certainly possible that some priming was going on, with me and doctors I like to do my due diligence ahead of time so I'm always coming in with something of an opinion already formed. I told him I've been working on various things for three years and they are all hit or miss, and asked him to take a look at my airway and tell me how I should adjust my approach to getting better sleep. Based on his responses to all my prepared questions I don't think this is the case, as I said in the OP he answered each time that only after my nose is fixed we can see if it's still a problem.

Jay: Glad to hear your experience was positive. How was your septum deviated? Mine was reported as moderate deviation to the left, with a bone spur protruding to the right. If I do the block one nostril test, the left seems pretty consistently worse, but now I'm wondering if I'm comparing a 40 to a 60 instead of most people who would be comparing a 60 to 100. I'm interested to see if your numbers change, most especially tidal volume and minute vent, as I've been surprised at how low mine are for my size, with findings in my charts of steady breathing interrupted by spontaneous arousals that I suspect are related to simple under-ventilation which I correct with some temporary mouth breathing.

Paula: Yep, he said he'd go after all of it in one go.

Gainerfull: He's been practicing since before I was born, and he is very confident that this will at the very least help me considerably. My gut tells me that this will potentially be life-changing, due to my own personal history. When I was 8, I was sick all the time, scrawny, snored badly at night, etc. Had my tonsils and adenoids out and BOOM everything changed. I started eating better, gained a bunch of weight (which was needed, but I overdid it a bit...), and started sleeping soundly at night. I commented that the oversized adenoids would be unusual because I had mine removed already, but heard they come back about 10% of the time, to which he replied "More like 2%, but there they are."

My only hesitation is the remote possibility that the turbinate reduction affects my body's feedback system of nasal breathing and causes me to feel like I'm not getting full breaths despite the fact that the blockage has been removed.

[Deborah K.]

I had surgery in the 80s to correct a deviated septum and collapsed turbinates, to remove polyps, and to create rear antral windows to help my sinuses drain.  I have teeny child-sized sinuses.  This was all done in one surgery.  I had the surgery because I had constant horrible sinus infections.  In 2018 I learned that I have apnea, so clearly, the surgery did not prevent apnea, and I doubt that having surgery will eliminate your apnea.  Just my opinion of course.

[BoxcarPete]

If you want my take on that, one of the top risk factors for OSA is age. It's possible that you could have been diagnosed 5, 10, or 20 years earlier than you were if you hadn't had the surgery. Or, you could be completely correct and it had no impact.

I personally know that tonsillectomy + adenoidectomy gave me 20 years of better sleep before the remaining issues caught up to me. Adenoids are back, septum has probably always been a little squirrely since I haven't ever broken my nose. I'd love to get another 20 years before needing to intervene again.

Sounds like I'm arguing to convince you all, but I really only need to convince myself. I should probably just go for it, then, I suppose.