Hey all,

I guess looking for a bit of encouragement. My MARPE install is *finally* next week. I’ve had to do 6+ months of appointments to prepare due to some put off dental work and periodontal issues, as well as insurance calls to get it covered. Been working at this for the better part of a year.

But it‘s all becoming extremely real and I won’t lie, I’m nervous. I feel like I’m crazy for taking on a journey that might ultimately change my face (for the worse). I’ve consulted with an airway ortho and sleep apnea surgeon, and if someone else had my anatomy (32 immw/17 piriform) I would 100% advise them to do this from afar.

But it’s kind of crazy. I’m in my 30’s. I’ve had my face my whole life, and I’m about to go on a two year journey to change it. I’m improved on BiPAP but I’m still quite sleep-sick. I’m actually up early from a massive apnea right now. On the odd days I get a truly good night of sleep I feel SO much better.

Can someone just tell me I’m not crazy for this. It’s so easy to give advice, and I like to think I’ve helped many people on these UARS forums and elsewhere. But it’s a bit intimidating when it’s your own face and life, unfortunately.

Currently on the waiting list for PAP, due soon, but I want to get my ducks in order for next steps and am looking into MMA etc. What are the key scans and whom should I go to, OFMS?

I see people post:

- X-rays

- CBCT

Are there particularly types of these or particular details I should consider when getting this done?

Thanks

Also, I'm in the UK in the South, not far from London so any specific recommendations also welcome. Assuming NHS will not cover so I'm expecting to self pay

The process is a bit confusing, you're meant to book an appointment and pay without any guidance on what scan to get? Not getting much responses to emails either.

It says to get a CBCT scan, but what do I say to a CBCT centre to make sure they give me the right thing, I have no experience with this.

Can someone with experience help me with this please? And tell me all the scans / pics / data that these FME providers, like Manuele, will need for a consultation and to offer me a FME installation. Thanks!

I want to make a comprehensive guide for people with UARS who are waiting for expansion/surgery or cannot afford treatment yet and they need ways to survive day-to-day.

Comment ANY tip, trick, routine, or small change that has helped you cope with your UARS symptoms. It doesn't have to be a major improvement, even something that only helped a little could be useful to someone else.

Think about anything that has helped you with:

Sleep • daytime fatigue • focus/brain fog • anxiety • socializing • working/studying • getting through the day • mornings/evenings • feeling more functional

The goal is to crowdsource a UARS Survival Guide for people stuck waiting for treatment.

TLDR: The largest insurance companies in the US all accept RDI for an OSA diagnosis.

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Disclaimer: Some of you might already know this, which is great, but this was a shocking discovery to me given how often I hear the opposite. Hopefully this post can help some patients in need.

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The Myth: Insurance does not recognize RDI in the diagnosis and coverage of OSA.

I have read and heard this countless times on subs and forums, and directly from sleep docs.

Adverse Outcomes

This myth has negative health consequences. There are countless stories on this sub of patients going undiagnosed and/or untreated. These are largely a function of the insurance myth:

1. Many sleep doctors still do not consider RDI in their diagnoses.
2. Many sleep doctors still use outdated at-home technology that does not even calculate pRDI.
3. Many sleep labs still do not score RERAs nor calculate RDI (or do not do so properly).
4. Meaning, many would-be UARS patients go undiagnosed and untreated.

Debunking the Myth

1. CMS (Medicare/Medicaid): This is the largest insurer in the US. Read the guidelines here.
   • "OSA has often been defined by an apnea-hypopnea index (AHI) or respiratory disturbance index (RDI) of ≥ 5 events per hour during sleep"
   • "Medicare covers CPAP for the treatment of OSA if the beneficiary has an AHI or RDI ≥ 15 events/hour"
2. United Healthcare: This is the largest private (commercial) insurer in the US. Read the guidelines here.
   • "OSA severity is defined as: Mild for AHI or RDI ≥ 5 and < 15 Moderate for AHI or RDI ≥ 15 and ≤ 30 Severe for AHI or RDI > 30/hour"
3. Anthem/Elevate: Second largest private insurer. Read the guidelines here.
   • "For the purposes of this guideline, the terms AHI, RDI, and REI may be used interchangeably."

If you read others like Aetna, they are all the same (though there may be some I didn't read that only count AHI).

Related Myths

• UARS is a Type of OSA: This is true from an insurance standpoint but not necessarily from a scientific/medical one. The adverse impact is that it is treated as a "lesser form" of OSA.
  • Source
• UARS is a "Mild" Form of OSA: Debilitating symptoms such as EDS have been shown to be more severe in UARS patients than in "mild OSA" patients. The adverse impact is that doctors do not take UARS patients seriously, do not provide adequate care, and/or diagnose with idiopathic hypersomnia (or refer elsewhere) if the patient does not respond to minimal treatment.
  • Source 1, Source 2
• AHI > 30 is Required for Surgery Coverage: Surgery (especially MMA) is rightfully the last resort given it can be highly invasive. However, many doctors do not even go down that path out of fear that insurance will not cover it, and the cost is prohibitive to most paying out of pocket. Although there is no data on the approval rates, the insurance guidelines lead me to believe that many more patients can get surgery covered.
  • United: MMA for OSA is covered if the patient has RDI > 15, ESS > 10, failed PAP, and has jaw deformities.

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Discussion

The state of sleep medicine is clearly in disarray. The AASM guidelines contradict themselves (source), sleep studies are not standardized, doctors are not familiar with the basics of UARS, and insurance coverage myths persist that negatively impact health outcomes, particularly because they are perpetuated by the doctors themselves. This is a travesty, as anyone who has spent time on this sub already knows. What does this mean in practice?

It means that us, the patients, must navigate diagnostic tooling, medical literature, treatment options, and insurance coverage on our own. It means that, often, the best we can hope for is to convince our doctor to (a) take us seriously, and (b) prescribe more advanced treatment options.

Thankfully, the next-gen at-home sleep tests can score pRDI, which they claim is ~90% correlated to an in-lab PSG, meaning it should be a "good enough" proxy for RDI and a UARS diagnosis. And thankfully, researchers and practitioners such as Dr. Barry Krakow and Dr. Avram Gold continue to research and/or advocate for proper diagnosis and treatment of UARS. What does this mean in practice?

• Ensure your sleep test will score RERAs and RDI (or pRDI) in advance of the test
• Share the latest research with your doctor if they don't take you seriously
  • ...or find a doctor more expert in UARS
• Check your insurer's coverage guidelines and share them with your doctor
• Develop a treatment plan and do not stop until all symptoms have resolved
• Most importantly, be the CEO of your health.

I hope this is helpful to those seeking help with a diagnosis, treatment, or insurance coverage. I welcome all discussion.

Hello - how far does the latest iteration of the FME expand up to (i.e. 8mm, 9mm, etc)?

Curious about the cost of this procedure and whether anyone has had luck getting this covered through insurance?

I feel like I have all the checkboxes to justify an insurance claim.

-Diagnosed with Mild OSA (AHI of 5)

-Poor Nasal Breathing due to allergies and I suspect anatomical issues (already had a septoplasty w/ Turbinate reduction and nasal valve repair. Currently treating allergies (environmental) with Immunotherapy.

Appreciate any input/advice!

I've seem to have made the classic mistake of picking MMA over expansion. I'm 3 months post op from 13mm advancement without any sleep improvements. My imw is 28.8mm.

What providers have the most experience and best outcomes expanding on MMA patients.

Hi all, my friend has severe UARS-like symptoms (unrested after 12 hours of sleep, wakes constantly at night, anxiety, cognitive symptoms) and strong OSA physignomy (small mouth, recessed jaw, sleep ). Her father has OSA and UARS as well.

I convinced her to do a watch-pat based sleep test. The WATCH-PAT test found an RDI of 3.5. However, she slept only had 10% rem 10% deep sleep and the test was cut short by her waking of for work after 5.5 hours. She also had an average heart rate of 77, which is crazy high. Test did not report the RDI in REM separately because I used crappy Sleeplay provider.

I suspect that she was too alpha activated by flow limits to enter deep sleep or REM often, and therefore her RDI was artificially low or miscalculated by the WATCH-PAT.

What's my best path to getting her a mandibular advancement device in the US (DMV area). I'm worried that most sleep clinics here don't care about flow limits at all, so they will just dismiss her. I could get another better study done?

I know insurance may not cover the MAD, but I would gladly buy it out of of pocket. But in the US you need a prescription to even buy one, a dentist can't just make it.

Does anyone have a suggestion?

Btw way, the recent RCTs on UARS have shown the MADs are effective and they use RDI or flow limits to score patients in, which Guilleminaut also advocated for.

https://preview.redd.it/dm6kaf32qtjh1.png?width=3402&format=png&auto=webp&s=12959b126a67982769ede3cce92768dd253307c8

TLDR:

• The Symptom: 24/7/365 unvarying, severe brain fog localized as a "physical block" in the prefrontal cortex.
• The Impact: Sluggish information processing, severely impaired working and long/short-term memory, emotional numbing, and an inability to follow even a TV show. No physical fatigue, secondary symptoms or "wired" feelings.
• The Clue: A single, spontaneous 1-hour remission 4 years ago after a night of short sleep (5–6 hours), waking up feeling genuinely refreshed.
• Ruled Out: ADHD, SIBO/gut issues, structural brain lesions (normal MRI), thyroid issues, MCAS/PEM, systemic inflammation, insulin resistance, and major vitamin deficiencies.
• Failed Treatments: Anti-inflammatories, antihistamines, carnivore and SIBO diet, water fasting, Low Dose Naltrexone (2.5mg), Nicotine gum, Antibiotics, nasal corticosteroids, Memantine and other supplements.

As the title says, for the past 6 years I've had 24/7 unchanging brain fog/SCT. I've tried many interventions and it stays the exact same intensity no matter what I do. I don't have any other symptoms other than the brain fog.

The way my fog is different than most is that I don't have a "tired but wired" feeling, the main problem is strictly cognition. It is very comparable to sluggish cognitive tempo meaning it takes me a long time to process information, my long and short term memory are really bad, thoughts feel like they have weight to them and I can't think easily. When I try to think of something often times I forget what I was thinking about. The best way to describe it is as a wall that is in my prefrontal area, or like there is something blocking my brain in the prefrontal cortex. My working memory feels very narrow. I can't even watch TV because I don't understand what is being said.

SUPER IMPORTANT: I've had only one situation where the fog completely relieved itself overnight basically and I was clean for 1 hour, after that it returned and I didn't even notice. It was 4 years ago but if I recall correctly, I did nothing out of the ordinary except sleeping less (~5-6hrs), I tried it again but I couldn't recreate it.

This sent me down a rabbit hole trying to figure out if there was anything that I could fix that was causing the fog. I finally realised it wasn't permanent and could somehow be fixed! I tried antihstamines for 2 weeks, antibiotics, ibuprofen, sleeping more, meditating, cutting out devices and I had no response.

After that I did a series of blood tests which I'll post down below. The only results that were ever off were my vitamin D always - I supplemented but no change, my AST and ALT but I did a workout the day before the blood test and I repeated the test but again nothing came up, after my 9 day carnivore diet my aldosterone and serotonin were a bit high but nothing too alarming or something that can explain the fog, my cholesterol can be a bit lower but also just on the edge of the range, and most recently my homocysteine was 22 but retested it yesterday and it was within range. Everything else (iron, candida swab on face and throat, bilirubin, epstein barr, thyroid, b12 etc. - I will post in the comments) were completely fine.

I scanned my neck with an echo since I felt my lymph nodes and my thyroid was fine and the doctor said the lymph node was unreactive and was probably there because of a previous infection.

I decided to try out a 3 day water fast and I felt no change.

Went to see a neurologist and did the standard tests like checking my eyes, blood tests, MRI and everything was good.

Did the carnivore for around 9 days followed by low sibo diet for 8 days and went to a GI doctor in case I was missing something but blood tests showed I had no problem in the gut and nothing changed during the diets.

I tried nicotine gum, magnesium, omega 3, b complex vitamins, alphalipoic acid and similar supplements to no effect. I've tried taping my mouth since I thought maybe the episode I had no fog was because I slept well, I had also felt refreshed after sleeping after years, but it gave me no change to how I felt. Nowadays I feel neutral when I wake up, but in general my emotions have numbed down and feel neutral all the time.

I then tried LDN at 2.5mg for 2 months and I didn't feel any change in the fog.

Most recently my doctor gave me memantine as a trial and have been taking that for the past 12 days but again I haven't noticed any difference.

What am I supposed to do? I have no other bodily symptoms except the fog and I haven't seen anyone with my kind of problem since the fog is the exact same 24/7/365 and never ever changes.

I've been to a psychologist and adhd has been eliminated, it's just that my cognitive abillities have fallen down drastically. It's not stress since I've had periods where I've done absolutely nothing but again, I can't use my brain at all.

Outside of that I do have anhedonia/emotional blunting and in general have lost the feel for the vibe/atmosphere of the world. I don't feel like I am fully engaged with the world and everything is very neutral.

Tested and eliminated:

Significant inflammation (systemic, mucosal, neuro) - Normal CRP/ESR multiple times, no response to diets, antibiotics, LDN, memantine, nasal steroids, 2+ days 20mg prednisone

Major hormonal - Full recent panel normal

Gut / food sensitivity / SIBO - Carnivore 9 days, 3 day water fasting, 8 day low-SIBO diet, normal stool tests, metronidazol

Allergies - Negative panel, no response to nasal treatments

Classic sleep apnea with desats - Stable symptoms, no major sleepiness, no sleep test yet

Gross structural - Clean MRI, normal sinus CT

Nutrient deficiencies - Corrected B12/D/iron etc. with no change

Pure venous pooling / major positional CSF pressure - Handstand causes different pressure compared to prefrontal pressure from fog

Strong dural mechanical sensitivity - No pain from pressing/tapping prefrontal area

Classic central sensitization with sensory amplification - No light/sound/smell sensitivity, no scalp tenderness

Breathing / CO2 regulation - Hyperventilation / box breathing no change

Simple cold-induced vascular response - Cold face wash no change

Sugar / metabolic swings - Carnivore + no-sugar periods no change

Stress/thinking too much about fog - didn't even know I had fog until 2 years in, took months off to recover no change

PEM/CFS - No crashes after working out, no tiredness

Vasomotor rhinitis - no change based on nasal stuffiness

What do I even do next? Keep in mind any lifestyle fix or any type of light test I do has no result, and I have no leads to follow. Literally nothing that sticks out or causes health problems.

The way most people fix the fog is they do something - it works, follow along until you find the source. I have absolutely nothing to follow or that changes the fog EVER.

Anyone with something similar or advice?

Edit: why is this downvoted lmao, you should feel ashamed

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meds are mirtazapine 15mg seroquel 200mg temazepam 15mg I am sleeping about 3 hours a night

I’m consulting with FME providers now.

They consider me a good candidate because my IMW is very narrow - 30 for an adult male.

On the other hand, my nasal aperture is 22, which is pretty average for a Caucasian male. From the outside, my nose looks plenty wide.

Is there any evidence which matters more?

Also, does IMW matter with a tongue tie? I won’t be able to have the right tongue position no matter how much I expand.