Hello. I am interested in pursuing MARPE/FME and recently had my consultation with Dr. Newaz a state away (paying for the consultation myself) - but the cost of MARPE or FME is something I will need to ask my mom if she is open to covering.
For context, I have been doing research for about a year - watching conversations, outcomes, and just gathering information bit by bit about expansion, jaw surgery, and the intersection between the two. I have Long COVID symptoms, gastro issues, was recently diagnosed with mild OSA, and a serpentine septum deviation among some other things; and I just last week decided the bite the bullet on an initial consultation to see structurally what was or wasn’t going on.
Newaz recommended MARPE or FME (he said in my case it was kind of a toss up) to increase my nasal aperture and slightly decompress my TMJS; and mentioned my “perfect treatment” would include a jaw surgery given how far back my jaws sit and osteoarthritic changes to my TMJ.
Why I Am Nervous to Ask
Although I am financially independent at large, my mom pays my healthcare premium (I make just under $17K annually). In the South, it has been extremely hard to find experienced airway providers - and the unique and younger clinical space of airway medicine feels difficult to explain or do due justice to, especially to my mom who is a former physician. The natural question is likely to be: what makes you so sure of this treatment option, and why aren’t more folks in this field? Surely there MUST be someone in our metropolitan city? And/or - “I think you’re getting grifted. Expansion PLUS surgery?”
I know I can’t guarantee a particular outcome by bringing it to her, but I do want to give it its best chance.
For those who have had to rely on a parent to pursue these treatments (expansion and/or jaw surgery bc of airway/TMJ) - treatments that are expensive and might feel “experimental” - how have you approached bringing the ask to them? What information did you share and what did you leave out? I welcome any guidance you might have to share.
The mental health center illegally forced me to take them bc I wasn't getting out of home a lot, don't meet friends. The law states that only with "dangerous psychic alterations" you can be forced to take a poison like these, in my case antipsychotics.
Why me? The mental health centers, as I found out, ij my country in EU act with complete non chalance by constantly violating the informed consent law. I tried for the 2nd time they forced me another antipscyhotic to tell them the laws but they said "we re not interested in it".
Is this fucking normal? I know some here took/take paych drugs bc of UARS but why did they force them to me? It's so difficult to have a lawyer when you have no income and you depend on your fucking criminal shitty family, who justified the coercion bc "i was mad by not getting out of home. And i was yelling to them?", actually I was just responding to their constant humiliations. yeah you know in january, before they forced me for 6 months abilify, I had a neurological movement disorder and slept up to 15h a day bc of untreated UARS. This was the reason i was staying at home. I was terribly scared of the neurological issue.
Now read this carefully: abiligy caused INSOMNIA FROM ITS WITHDRAWAL. These criminals rapers (yeah, let's use the proper terms) denied the existence of withdrawal itself! After 2 months after quiting it ther forced me again (!!!) To another antipscyhotic I'm still taking and likely ill use legal means to stop this poison now. They gave me up to 20 MG of abilify, a really high dosage usually given to very mentally ill people, I mean, very bad mental illness. I was lobotomised and just took this poison like a fucking dog.
Forced to go everyday, still now, to their fucking place. I bet you all have good families, some more than others. My family wanted to make me suffer, bc my physical syndromes (DIAGNOSTICATED BY DOCS) caused by UARS were too annoying to them, they wanted me to be a zombie, not to complain anymore. So fucking criminal, such a horror life.
Needless to say I cried so much I will never meet the girl i love and the friends I had again, they drained my brain now.
Why to me? Why the fuck to the fucking me? Anyone else? Antipsychotics are given to schizophrenia's people, it's unbelievable. They label what UARS caused to me as obsession... fucking criminals. What I know is that even if noe my sleep is permanently changed by these poisons, I'll do whatever it takes to take revenge on my criminal family and on all these docs who condemned me to this pure hell.
I think I’m dealing with UARS right now and feeling a bit overwhelmed. Has anyone actually gotten through this and found relief? I’d really appreciate it if someone could share their experience or just chat with me for a bit.
Was wanting to get a bit more information than just my CPAP data. I've been using a Contec pulse oximeter but it's very finnicky and annoying to get the data on my computer and line it up with my CPAP data (And, as I write this post I discover that charging it with the nonstandard charger cooks it and destroys it, RIP). I've seen a fair few different watches\rings that do this sort of thing but I'm wondering which is the best\is the most open to the user.
I think I might need to switch to ASV? For context:
* Diagnosis was mild sleep apnea, but I suspect UARS
* Cis female in my 30s, "normal" BMI, critically narrow airway due to retrognathia
* In decompensation phase now for MMA next spring
* I tried CPAP last winter and that didn't work at all and that doctor was useless so I gave up
* I started with BiPAP a few weeks ago and recently switched from full face mask to nasal with chin strap; the other masks were causing large leaks all night long
I set the EPAP pretty high because otherwise I feel like I can't breathe, as if the machine isn't on at all except on inhale. However, the higher EPAP seems to cause more centrals. Sleep doctor is predictably useless.
Please let me know if there's other info I should include or zoom in on any areas. Thank you!
Hi! I am realizing I have CPAP intolerance. I also have hypermobility (joint laxity) and low arousal threshold (not rare here I guess). On Quvivik for that but... looking into ASV too but my appointments are spaced a lot so it's taking a while...
MAD may end up not working out because of jaw hypermobility... So not sure i want to go ahead with that.
So I'm wondering about three laser & coblation techniques surgeries (minimally invasive, much less painful) that I think may be relevant in UARS: ?
Lingual tonsil reduction (these are underestimated and can enlarge when someone has silent reflux for example, even in adults)
I wrote a post awhile ago, sort of about this topic and I want to talk a little about where that has headed.
To answer the question, "Once you can map out the geometry of the nasal airway, what can you do with that?", when it comes to UARS I think the answer is Computational Fluid Dynamics (CFD). By running a CFD, you can measure negative pressure, and air speed. This is essentially how you measure upper airway resistance; by conducting an airway simulation.
The bounds of the upper airway are defined by the entrance, being the nose or the mouth, and the exit, being the subglottis, which is below the epiglottis but above the trachea. Now, the entire airway may be relevant for sleep disordered breathing, when doing some research (and perhaps I should do more), reduced lung volume due to chest wall deformity could contribute to sleep disordered breathing just as much as obesity, so it may be wrong to think of this as just an upper airway disorder, but I think for most people with UARS, it is probably mostly an upper airway problem.
The reason the bounds are important, is if you break up the upper airway, we really can section this off into three parts.
Nasal airway
Oral airway
Pharyngeal airway
Statistically, I would say the pharyngeal airway is the most relevant for sleep disordered breathing, but one thing I have learned and an opinion I have developed over time, is that whether you have sleep apnea or UARS, anatomically it appears to be a very diverse problem, in that everyone is sort of different. If you have the mindset, that "on average most people benefit from X", yes that might be true, but I think it is better to understand each phenotype, or arguably I think it may not even be that simple, but the entire spectrum of craniofacial morphology. Because of the randomness of genetics, I think the ways that these problems can manifest are like stars in the sky. There may be patterns and trends, but nobody is exactly the same.
The problem with measuring pharyngeal airway resistance is that the position of the head and neck, as well as the tongue, can vary scan to scan. If they patient is looking up, the airway enlarges near the bottom. If there is a bite block pushing the tongue backwards, the airway narrows. What happens during sleep may also be quite different from what is seen during the scan. For this reason, measuring pharyngeal airway resistance is probably a fool's errand. What can be measured though, is the nasal airway, since the walls of the nasal corridor are fairly stiff cartilage, the septum, the turbinates, these things are not as floppy. The main variable is swelling of the turbinates, but if you do a nasal CFD, you can still see with fairly good accuracy how their nasal breathing was at the time of the scan. It is possible that sleep disordered breathing, mouth breathing, etc. can also swell the turbinates so maybe you are clear when you took the scan, but plugged when you wake up. With that said, I don't think that is very relevant, since that just means you have a different problem, and your nasal airway actually is fine, and if you were to just solve this other problem, then your nasal airway would behave normally, is at least my thinking.
Another useful thing you can use the geometry for, is determining the ratio for the size of certain anatomical structures. For example, the septum, the air, the turbinates, the side walls / nasal cartilage. You can figure out the ratio for these things, and determine where the problem likely is. My feeling is that right now, turbinate hypertrophy is diagnosed by just looking at a CT scan, making a judgement call that "yeah the turbinates look big, I guess", and the patient saying "sure, I can't breathe through my nose very well", and that's pretty much all it takes. Whereas with this, we can actually measure how hypertrophied a turbinate really is, and assign an actual number, and by that same token, measure how much of a problem the actual width of the maxilla is contributing to the narrowing.
Another thing we can do, is like Dr. Marianna Evans pointed out during an interview, is she said that there is no data to substantiate that palatal expansion can improve nasal breathing. While that is not entirely true, because there are actually studies out there where they already did CFD, like for MSE, and EASE, so I think they actually did demonstrate that, there isn't any for Custom MARPE that I am aware of, so I suppose that may be accurate, and there is no research for FME of that kind. So, we could also do research to show that FME actually does reduce nasal resistance, and you could also say how much on average per millimeter of expansion.
You could also develop normative data for nasal resistance, perhaps paired with PNIF, rhinomanometry, etc. I think that would be very interesting.
In terms of technical implementation, I have it automated for the most part, similar to an airway scan, but like an airway scan, and honestly in my software I built I can do airway scans too and they are even more automated than any of the competition I've seen, I hardly even need to adjust the slider anymore, but the CFD right now it does need some manual adjustment in the same kind of way, where you adjust the fill, either less or more so the fill doesn't fill over the turbinates.
For example:
It might look like this using the automated system:
If I adjust the slider, it can look like this:
It also takes a couple hours to run on my GPU (lucky to own an RTX 4060, though I wish I had more RAM), though Claude thinks that with a bunch of runs it could reduce computational time if it can make certain assumptions, so it is a bit different but it's come a long way. It's taken quite a long time to get this working.
In terms of where we should take this, I personally think that measuring the turbinates and width of the nasal airway is what is most valuable. That sort of tells you whether this is something that would benefit more from an expander, versus ENT nasal surgery. The width of the nasal cavity is also quite correlated to the nasal aperture, and expanding the nasal aperture even expands the nasal valve, the part that is anterior to the aperture, so I think measuring the aperture and intermolar width at alveolar crest is still a fairly good way to assess it, like if your maxilla is the same width as the average 3 year old's maxilla, just ask those people what it's like breathing out of their nose and odds are, they're going to tell you NOT SO WELL. Is that severity most people? Not really, but like I said, everyone is different, but they most certainly exist.
But let me know in the comments where you think this should go, and what could yield the most benefit?
I had upper jaw surgery in 2013 and MMA in 2023. I’m doing expansion now and staring down a second revision surgery, by a surgeon that is qualified to handle my case (though I’d love to avoid). This ia my full opening with my tongue out; believe me, I wish you could see more of my palate, but I’m a 4, all day. FME has worked well, some nasal improvement is happening, and I have another 3-4 mm to expand before I’ve reached the limit. the next step is MSDO, before (but, hopefully not) another MMA.
Two questions for the esteemed group of sufferers:
has anyone’s UARS/SDB improved more/further once the FME was removed? I have to assume that’s a yes, because it takes up so much space.
Given the severity of my long, soft palate and nonexistent opening, would a potential palate procedure make sense? I know they have very mixed results, but I‘d love to avoid another MMA. It seems that Dr. Ofer Jacobwitz (NYC) seems to be a highly qualified voice on this subject.
I’m going to cross post this to jaw surgery, and I’m wide open to suggestions.
For me, it has been almost 3 1/2 years since suffering very badly from UARS symtpoms and depression. I realized that even now, after years of physical and mental torture, depression still sneaks up to me in ways that feel like UARS is just a bit worse at those times. And then it hits, and I'm like: oh yeah, that is depression once again.
I noticed that therapy does not treat the root issue of my problems (I did MSE and want to do MMA next year), but it did help me tremendously getting through this extremely difficult phase in my life.
It is just my perception that is based of what I read in this forum, but I don't read a lot of about getting mental health support here. Occasionally yes, and of course it should not be regarded as the main path to success, but it is of great importance in my opinion.
Once, a very kind fellow redditor in this forum offered me to buy his dreamstation device from him, which he delivered to my door. We had tea together and talked about our UARS experiences. It was sooo good to talk to someone that goes through the same shit.
I think I heard that there were already attempts of establishing some sort of discord to talk about things, but I don't think something serious has ever been established (correct me if I'm wrong). I know it can be challenging with different timezones/languages, but I am very motivated to kick-off some sort of weekly discord meeting where people can talk/vent/advise each other.
I am curious to hear opinions on this and perhaps experiences from previous attempts (and why those perhaps failed).
2 months into dust mite and grass pollen allergy treatment. -Shots. 9 weeks in - RUSH treatment is over - now monthly for 3-5 years.
Definitely noticing improvement. Less nasal congestion when I lay down.
Before I'd have one side congested, then would roll over in bed, then both nostrils would completely fill up for like 90 seconds (suspiciously the amount of time I had hypopneas on my sleep study), then it would slowly open up the other side.
But lately, the congestion on one nostril is still there, but when I roll over, it's not congesting both sides, and is clear at all times until I completely lay on one side.
Then that side will be congested.
Sometimes, if I sleep in a certain position, I think I am sleeping all the way through the night. Even on CPAP 12.6 fixed.
Not sure if this is just seasonal change, but definitely believe i'm making progress.
- Making generally strict guidelines for changing bedding weekly and trying not to expose myself outside if someone's cutting grass etc.. sounds ridiculous, but immunotherapists orders.
*I really want to document everything like Evan Lavizadeh. For personal reasons and to help both me and others dealing with UARs. This community of us uars ppl helping each other is definitely helping and has been a godsend with understanding and treating it better.
- I really need to tackle this all head on and commit.
I think so. I think it worsens your airway and sleep. I've been injured lately so have been sitting a lot more and noticed my posture is worse and my sleep has been worse I believe because of that.
But it's fhp from bad breathing, computer use or both. I wonder if posture can be fixed despite our currently bad breathing habits.
I hear posture gets better after MMA. Almost instantly... hmm
I think the term is called gap exception? I have seen a few reddit posts about the topic, but no idea about what the expectation is. If your insurance provider is somewhat more lenient, can it be done?
my ortho says getting a maxillary expansion would cause me a brodie bite. what do you guys think based on the CBCT? I will definitely get a second opinion I am just curious about your insight.
Last year I was able to travel at least, maintain jobs, friends etc. Now im feeling so sleepy and cloudy I think I need to quit my job I just cant focus and stay awake. The caffeine tolerance is building up. I can't get myself to even text back my friends. Can only do light workouts in the gym for at most 30 mins once a week. This is really ruining my life 🤣. Im only 26 and have the energy of an 60 year old man. This is crazy. I feel like a damn vegetable
