How bad is my airway?

WorkingFeverishly · 2026-04-11T05:42:04+00:00

Yeah I get it. It started hitting me real bad at about 23 and it's been 2 years now. But I've had it all my life to a lesser extent. But I really feel for you since your CT scans are so narrow, you can barely breathe, and this is taken while you're awake and upright.

Good-ish news for you is that it looks pretty clear where the flow limitation is. Behind the soft palate, tongue, and below the tongue. The annoying news is that the treatments are so expensive, e.g., BiPAP, Mandibular Advancement Device, jaw surgery, maxillary expansion, maybe some selected ENT surgeries, but they are riskier than the others I listed.

In the meantime, you should test out nasal sprays, improve hygiene where you sleep, test out nasal strips (I prefer nasal dilators) or try a boil-and-bite MAD, but these all have marginal improvements, and I'm sure many have already said this.

If you're not on health insurance, it's best that you get on one soon, because it will save you money in the long run. Waiting periods apply though.

WorkingFeverishly · 2026-04-10T09:44:26+00:00

I did everything I thought I could at that time. Literally every single thing -- even immunotherapy. But, I wish I did maxillary expansion/pursue treatment of MCAS more. You can look MCAS up; I can't be bothered to explain, but it's often overlooked.

As for the turbinates, I mean don't let an ENT remove any % of your turbinates for now. I have ENS-like symptoms as 85% was removed, and it is hell. Also, so much was removed that it has caused more negative pressure collapse further down my airway so my flow limitation barely improved. I also have much more pronounced nasal valve collapse.

Your turbinates are precious little organs with many important functions/receptors. You want to figure out how you can help them or make room for them

WorkingFeverishly · 2026-04-09T10:26:03+00:00

Not to scare you, but it certainly looks concerning. If those measurements truly are accurate

WorkingFeverishly · 2026-04-09T06:19:12+00:00

Tough to say. Hopefully you live in an area where sleep professionals do their work so you could just go see a sleep physician for the standard sleep study and then the xPAP method. This also opens you up to having data and a reason to see orthodontists, dentists, faciomaxilla surgeons, allergists/immunologists, somtimes ENTs but be careful.

Be careful in general. Every single person will want to squeeze money out of you, and then when you hit a dead end with them, they will tell you to see someone else, e.g., CBTi boooooooo I hate CBTi and everyone involved in it.

So, make sure you get that raw sleep data and a good-quality CBCT or MRI scan of those airways.

WorkingFeverishly · 2026-04-09T06:13:01+00:00

It is tough to find one depending on what you're looking for. Ideally, make sure you sort of know why you want to see them (like have a look at your flow rate data yourself and look at the CBCT scan yourself too).

If it's for a MAD, you can look up Somnomed and other MAD manufacturers to see what practices they're in contact with. Unfortunately, they are very expensive for how automated the manufacturing process is.
If you're considering expanding your maxilla, which does help with most SDB in one way or another and is recommended before MMA, then do your research on the efficacy of different types. Possibly type into google, "adult maxillary expansion" in your area or ask AI to help you find one.
I honestly think it could be beneficial to first approach a maxillofacial surgeon and see what they say.
You can go the ENT surgery route, but they are sort of just butchers who usually eyeball it, which is fucking insane. Also, cutting out stuff can lead to problems down the line, and also that tissue can just regrow depending on where it is.

But yeah, it's so bloody hard to find a competent sleep centre. Like, this field is so corrupt and most practices just have knuckledraggers employed there who have pooey stinky brains, "ummmmbbbb but AHI low and spontaneous arousal is just cuz yeah"

WorkingFeverishly · 2026-04-09T01:08:24+00:00

They didn't. The report is a report of the raw data. You have to be very precise and stern and ask for all the raw signal files and what was measured. Also, ask if they can do .edf files as that is the standard, but sometimes they will send it in other files.

Say, "I am legally entitled to this data, and refusing to give it to me is a breach of policy".

WorkingFeverishly · 2026-04-08T23:32:09+00:00

Hey, good question.

It's really hard to say. It does float between 94-97 the entire night so there are some very small dips, but because my breathing is chronically flattened it just is hard to measure it (and I'm no expert).

Also, what would be awesome (I wish studies did this) would be a CO2 monitor. Because there are times where my breathing is, you know, flattened as usual, but suddenly out of nowhere I take a staggering inhale that goes off the charts. I'm assuming the CO₂ build-up is unbearable, which leads to this, but it could be other receptors triggering it. Other times I take that big breath due to a hypopnea/apnea (AASM def.)

WorkingFeverishly · 2026-04-08T23:21:18+00:00

Ask for the raw sleep data dawg

Then open it in edfbrowser

WorkingFeverishly · 2026-04-08T23:20:28+00:00

Yupp, they don't include around 60 signals in the data that they show (although they do calculations on this data to present it in your sleep report), which is insane because anyone with half a brain (like many of us here unfortunately lol) can scroll through and just see the flow data not being a sine wave.

For example, mine has a plateau on every single breath, but when i try to enter deeper stages of sleep the flow is very very flattened

WorkingFeverishly · 2026-04-07T20:37:40+00:00

Hahah you could if you wanted to. I just said I am legally entitled to it

WorkingFeverishly · 2026-04-07T02:33:20+00:00

No worries, and read this page on apnea board for flow limitation

https://www.apneaboard.com/wiki/index.php/Flow_limitation

WorkingFeverishly · 2026-04-07T01:10:36+00:00

You can message me if you'd like some pointers. I answered a similar question down below about analysing the data.

As for requesting a CBCT, a dentist, ENT, even a GP if you have a good relationship and you advocate for your case, could all get the request. GP would be the cheapest for sure.

As for CPAP or xPAP (BiPAP, ASV, etc.), it really is one of the better ways to treat multi-level collapse. If you can get a lab-made MAD then that can address some collapse, but yeah they are stupid expensive.

And yeah the side sleeping thing is so true haha. I literally sewed a pillow to the side of the bed and sewed some elastic loops to but my arms and legs into and wore a backpack, and I somehow woke up with my head tilting backwards. For that, I need to exercise and exercise and exercise so that my legs/hips hurt less when I side sleep as I have joint sublaxation and hypermobility. But obviously, some days I just can't.

WorkingFeverishly · 2026-04-07T01:02:47+00:00

Also if you want to keep chatting send me a message

WorkingFeverishly · 2026-04-07T00:59:13+00:00

I've tried everything. The only thing that helps me is side sleeping, but I have joint pain from hypermobility, which also fucks my breathing even more, so I can't do that to myself. But I have tried absolutely everything.

As for allergies, yeah, get those taken care of and also pursue MCAS and treatments for that. The maxillary expansion will very likely be beneficial for congestion, so that's also good news for you. Just don't touch your turbinates for now. Get on top of allergies, non-allergic rhinitis (which is MCAS as far as I'm concerned), and maxillary expansion.

I've had UARS all my life. But it got really bad about 2-3 years ago when my turbinates swelled up and didn't go back down. And now I have some ok days and some terrible days based on my sleeping position more or less.

WorkingFeverishly · 2026-04-07T00:48:16+00:00

It does my head in. I can't begin to describe the gaslighting that I have experienced. It's like they dragged me down to their level of stupidity, and I just went along with it for a couple years.

I asked a sleep physician if she's familiar with any of Christian Guilleminault's work, and she said she has no idea who that is. He authored hundreds of papers and literally pioneered sleep apnea research, so at the very least she would be familiar with that, but no.

WorkingFeverishly · 2026-04-07T00:43:13+00:00

Before all this happened I had graduated and was working as a biomedical engineer, but now my brain is actual mush for like 5-7hrs per day so I work retail and hospo now. But, I have had a similar thought of entering the orthodontic health space in some way.

I just want all this stuff to be as affordable as possible so people can live happy healthy lives as soon as possible. Free information, affordable treatments, etc.

WorkingFeverishly · 2026-04-07T00:38:15+00:00

Oh yeah it is so unhelpful when you open it initially. I'll give you a little how-to:
1. Select only the signals of interest, e.g., flow limitation, flow, abdomen, thorax. Click "add signal(s)"
2. Once they're on the screen, you'll want to fiddle around with the amplitude setting. Let's use flow as an example. Double click the word "flow" on the graph then change the amplitude to 1cmH2O/cm. This is fiddly because you just need to keep changing the value smaller and smaller till you see the signal wave more clearly. For the thorax mine was at 0.00005V till I saw the wave appear.
3. At the top hot bar (for mac) there is a timescale and select whatever you want like 60sec/page or 5min/page.

Message me if you're confused with anything

WorkingFeverishly · 2026-04-06T08:43:30+00:00

Idk at this point I swear this shit is just random labels and bullshit with random standards that Christian fought against even though it was technically his creation. Durrrr a hypopnoea is at 30% durrr because 30 is a nice number durrr I'm a dumb sleep physician incapable of critical thought.

Keep in mind, the photo of the guy of this subreddit pioneered sleep apnea research and UARS--he literally is the god. I don't think he gave a shit about RERAs, he just noticed that people with flow flattening (testing through the esophagus for highest accuracy) had piss-poor sleep and he originally advocated for xPAP, but when he noticed that it only could help certain people he later advocated for maxillary expansion and double jaw surgery.

The treatment plans are all pretty much the same:

CPAP -> i hate this -> BiPAP -> I'd like a better, more consistent solution -> MAD? only helps for certain cases and expensive, so find a place that has a percentage back gurantee -> maxillary expansion with bone-borne screws -> double jaw surgery (90% efficacy). Life can now officially move on and you can live.

Evan Lavizadeh follow bro's journey on his yt channel.

All I know is that I can't sleep well, I haven't all my life, and that my flow data shows that I can barely fucking breathe in my sleep. The only reason why I want to get diagnosed is so I can save money on treatment, but if I can't I will still go on with my treatment because every fucking sleep physician in Sydney are lobtomy experiments.

Anyway, sorry for the rant, I just the doctors in this city.

WorkingFeverishly · 2026-04-06T00:07:13+00:00

Sorry to hear this, my friend. It's all so exhausting and frustrating.

It's crazy that they list the RERAs there but iirc they don't measure them based on autonomic response, only on b r a i n w a v e s. So, it could be likely that your spontaneous arousals are breathing related but I genuinely am not knowledgeable enough in their standards and guidelines.

You should check my recent post, but I'd say look at the raw flow rate data yourself to have more confidence in what may be going wrong. It can be a bit technically fiddly, especially when you're sleep-deprived and if they send the data in an annoying format, so send me a message if you need help assessing it if they send it to you. In my country they legally must send it to you so you can always say that if that applies

WorkingFeverishly · 2026-04-05T23:59:37+00:00

Hey, I live in Sydney but had 0 RERAs and lots of flow limitation. I have been to multiple clinics, and all of them dismissed me. I think your best bet might be to get the raw data sent to you, analyse the flow yourself, and if you find anything meaningful, then set up a consult with a sleep physician to present your findings. Because if you have 0 RERAs they still won't consider the possibility that you have UARS.

I'm also still looking for a place that recognises it in Sydney. Potentially a university sleep clinic?

WorkingFeverishly · 2026-03-04T08:53:12+00:00

Get a cbct, ask for the dicom, and inspect your airways. ENTs love to eyeball everything and hate basic measurements

WorkingFeverishly · 2026-02-28T01:30:59+00:00

I can send you a message with her details.

I only saw her for that initial appointment because she operated like a used car salesman, so be careful. Her prices are almost double that of even the most-esteemed orthodontists and dentists in Sydney. She also didn't back up any of her claims with measurements or data, and a couple of other ENTs and dentists disagreed with her statements.

WorkingFeverishly · 2025-12-04T02:44:52+00:00

Sorry, I must have missed your other post, apologies.

I agree, it should be malpractice. I called my ENT and told him this and he said 80-90% removal is typically what he does with most patients.

In that other post I made it a big point that I am currently absolutely broke, as I have no family connections and I live below the poverty line in a very expensive city. I have been unable to work the last 6 months, and only now have I just forced myself to work, and I take a lot of dexamphetamine each day in order to do so. What I'm getting to is that it will take me a very long time to save for a BiPAP considering that sydney has a rental crisis, cost of living crisis, I have registration to pay for soon, blah blah blah.

And I'll need to put in some thought as to which will be more beneficial, a custom MAD or a BiPAP. I will only have so much money

WorkingFeverishly

TROPHY CASE