In the UK....Seeking advice on whether or not to pursue CPAP

[LG1819]

Hello everyone,

I'm due to have jaw surgery in November, and although this was originally for aesthetic concerns, I have been alerted by my surgeon to the functional consideration -- namely that my airway is small which puts me at risk for sleep apnea.

I can't say I have any notable severe symptoms currently other than perhaps some daytime tiredness sometimes, but the surgeon said that if I don't have OSA now, it'll definitely become a problem when I'm older (I'm 27 right now) due to soft tissue laxity. From what I've read, people can also be experiencing symptoms but just not realize because it's their 'normal'.

The narrowing of my airway is caused by receded jaws which will be fixed with the surgery, so while I'm not considering long-term management of sleep apnea with a CPAP machine, I'm wondering whether I should get tested and potentially be using one in the six month run up now that I'm aware of all this. I've been reading about the damaging cognitive effects of sleep apnea if left untreated, and while my risk factors are soon to be treated, I feel anxious about the damage it may do from now until my surgery.

However, I've discovered that pursuing this, particularly in my country (UK), opens up a whole other can of worms. I can see polysomnography is the standard for diagnosis, but there seem to be barely any places in the UK that do it and those that do cost like £2000, so I can't afford that. Therefore, I've been looking to the home tests, but have also heard they can be vert inaccurate.

I've also seen people disregard the testing altogether, and simply just buy a CPAP machine and figure out the settings on their own. I'm not sure how I'd go about doing that with no benchmark to go off of, but given the high cost of a proper in-lab test I can't afford and the apparent inaccuracies of the at-home tests, this is at least something to consider (if it's safe/advisable).

Overall, I'm conflicted about any route because even if I just bought the machine, it's a lot of money for a risk that I'm hopefully eliminating this year anyway. That said, having talked to my sister -- who has the same jaw profile but doesn't want to pursue surgery -- I could give the machine to her afterward so that someone else can benefit from it.

Would love to hear your thoughts and opinions. Thanks!!

[vandownbytheriver]

An O2 monitor would be the best way to tell if you're not sleeping well... I use the O2Ring. It is not cheap, about 170USD, but it records the night and lets you examine the graphs, and is much cheaper than a new machine, which you would need a prescription for.

Here in the USA we can buy cheap machines off FB Marketplace or Craigslist... I just checked London CL and got no hits for Resmed... not a good sign. You're getting the gold-standard treatment, the jaw-breaker is the only one that definitely fixes you for life... all the other tongue, palate, turbinate etc stuff seems to have a problem lasting more than a few years.

If you do find a used machine check a) whether it's involved in FoamGate recall and b) check the hours meter. Generally below 4000 is considered decently low, 20,000 is gray-bearded. Don't buy a machine from a smoker's home... I'd avoid one from a house with cats, for instance, being allergic. You'll want an APAP seeing as how you're going to experiment with self-prescription, these machines will hunt for the best pressure... only problem is they sink back down, starting the whole process over again. You can use one for a few nights and find the good CPAP pressure to set.

Next is a mask... here they require a prescription as well, but you can piece one together by buying parts off Amazon etc. Perhaps your doctor will write you a scrip? The hardest part is finding the mask you like, at the therapist office you can try several, on the used market you'll generally find nobody is buying used masks because *ick*. If you do get a decent used machine replace the mask, hose, and air filter, and probably the water tub too. Your sister will probably want a different size mask.

I recently spent 2500USD on a 'titration'... entirely worth it... now I have the perfect pressures set. Nothing like doing it in a lab, with someone driving the controls. Given that you're going to get surgery this is not an option really. If your budget is 2000UKP your first objective is to find a cheap VPAP machine. There's a lot of Philips machines on the market these days, do your research and get one that's been refurbished and foam-clear that can do APAP... that would be the cheapest I'm guessing. Gold-standard would be a used Resmed Airsense 10 Autoset with less than 2000hours. Good luck.

[ChicagoGranny]

An O2 monitor would be the best way to tell if you're not sleeping well

No. A person can be very ill with sleep-disordered breathing without presenting any O2 desats.

[ChicagoGranny]

I can't say I have any notable severe symptoms currently other than perhaps some daytime tiredness sometimes

I've been reading about the damaging cognitive effects of sleep apnea if left untreated, and while my risk factors are soon to be treated, I feel anxious about the damage it may do from now until my surgery.

Your emotions are winning the battle with your intelligence.

CPAP does NOT treat risk factors.

[LG1819]

Thanks a lot for such a detailed post!

An O2 monitor would be the best way to tell if you're not sleeping well... I use the O2Ring. It is not cheap, about 170USD, but it records the night and lets you examine the graphs, and is much cheaper than a new machine, which you would need a prescription for.

The O2 Ring sounds a good first port of call. Having looked they sell the O2Ring here in the U.K., but it isn't cheap, as you say; there seem to be a lot of overnight Oximeters on the market at under half that price, but it's difficult cutting through the descriptions to see what the true differences are. Was there a specific feature/quality you bought the O2Ring for?

Here in the USA we can buy cheap machines off FB Marketplace or Craigslist... I just checked London CL and got no hits for Resmed... not a good sign....


...If your budget is 2000UKP your first objective is to find a cheap VPAP machine. There's a lot of Philips machines on the market these days, do your research and get one that's been refurbished and foam-clear that can do APAP... that would be the cheapest I'm guessing. Gold-standard would be a used Resmed Airsense 10 Autoset with less than 2000hours. Good luck.

We actually have a marketplace called Gumtree here in the UK that's very similar to Craigslist and there are quite a lot of Resmed Airsense 10 Autoset models on there for sale. These are all labeled as CPAP, though. I presume the 'Autoset' part in the name means they can do APAP, but what about VPAP? I've had a quick look but am unsure of the difference between VPAP and CPAP, only that the V means variable.

You'll want an APAP seeing as how you're going to experiment with self-prescription, these machines will hunt for the best pressure... only problem is they sink back down, starting the whole process over again. You can use one for a few nights and find the good CPAP pressure to set.

What do you mean by sink back down? As in it keeps changing the pressure throughout the night?

[LG1819]

I can't say I have any notable severe symptoms currently other than perhaps some daytime tiredness sometimes

I've been reading about the damaging cognitive effects of sleep apnea if left untreated, and while my risk factors are soon to be treated, I feel anxious about the damage it may do from now until my surgery.

Your emotions are winning the battle with your intelligence.

CPAP does NOT treat risk factors.

My concerns are that there seems to be a lot of ambiguity surrounding the presentation of OSA. While I'm not living a life of misery like many are, I've heard several times of people who feel they're perfectly fine symptom-wise, get a study done, and are shocked that they have severe OSA. Given the size of my airway, my worry is that I would be one of these people.

Perhaps I have been incorrect with the terminology: my assumption was that using a CPAP machine would treat sleep apnea, if I have it, in the meantime until I have surgery. Wouldn't my narrow airway be a risk factor that CPAP would be temporarily treating?

[ozij]

Wouldn't my narrow airway be a risk factor that CPAP would be temporarily treating?

No. CPAP can help keep your airway opnen if your soft tissues are collapsing and obstruction it.

but the surgeon said that if I don't have OSA now, it'll definitely become a problem when I'm older (I'm 27 right now) due to soft tissue laxity.

Doesn't sound like your surgeon is too worried about you having sleep apnea now.
Do you snore?
Did the surgeon see any tissue laxity at present?
Could he (she?) refer you to a sleep test?

[ChicagoGranny]

No. CPAP can help keep your airway open if your soft tissues are collapsing and obstruction it.

Right. CPAP does not treat risk factors.

Given the size of my airway, my worry is that I would be one of these people.

CPAP does NOT treat unreasonable worries.

Relax. Sleep-disordered breathing is not going to kill you nor destroy your brain over the next six months plus recovery time.

[LG1819]

Wouldn't my narrow airway be a risk factor that CPAP would be temporarily treating?

No. CPAP can help keep your airway opnen if your soft tissues are collapsing and obstruction it.

but the surgeon said that if I don't have OSA now, it'll definitely become a problem when I'm older (I'm 27 right now) due to soft tissue laxity.

Doesn't sound like your surgeon is too worried about you having sleep apnea now.
Do you snore?
Did the surgeon see any tissue laxity at present?
Could he (she?) refer you to a sleep test?

Ok, so a narrow airway isn't indicative of sleep apnea per say, only that it increases the risk for soft tissue obstruction to occur?

I haven't had a sleep study done because A.) I was getting the surgery primarily for cosmetic reasons and B.) it was deemed unnecessary from an airway perspective because having the surgery should solve any present/future issues anyway. I guess if I'd have gone in to the surgeon's office complaining about sleep apnea symptoms, I likely would've been sent for one.

My concerns now stem from the fact that due to some scheduling and orthodontic issues, my surgery has had to be pushed back. I was originally due to have the surgery on the 14th of June, but will now be having it in November. So now I've got this six-month waiting period coupled with the knowledge about my supposed risk for sleep apnea, and it's pretty disconcerting. I'm wondering if my whole life I've actually been sleeping poorly and just not realized, and now that I'm aware of it, I'm worried about the potential damage it's doing each night until I get it fixed.

I'm having the surgery done aboard, and while I've had over a dozen Zoom consultations with my surgeon, I haven't met him in person yet, so there's been no examination of my airway to investigate any tissue laxity. Only a CBCT scan that I had done for the planning, in which he analyzed the total volume and determined my airway to be small enough to cause problems (he said this was inevitable given my facial profile, as I present with bimaxillary jaw recession).

No snoring as far as I know (my partner has never noticed). I'm going to try and see if I can record my sleep to see for sure. Thanks for the post.

[ChicagoGranny]

https://www.healthdirect.gov.au/hypochondria

[ozij]

I'm having the surgery done aboard, and while I've had over a dozen Zoom consultations with my surgeon, I haven't met him in person yet, so there's been no examination of my airway to investigate any tissue laxity. Only a CBCT scan that I had done for the planning, in which he analyzed the total volume and determined my airway to be small enough to cause problems (he said this was inevitable given my facial profile, as I present with bimaxillary jaw recession).

You live in the UK, and you are going to have surgery on your bimaxillary jaw recession in foreign country by a surgeon whom you have never met in person? Did you consult with any local physician? Do you realize how serious this surgery is?

I can see polysomnography is the standard for diagnosis, but there seem to be barely any places in the UK that do it and those that do cost like £2000

And yet you can afford surgery abroad, which includes the price of the trip, the surgeon's pay, the hospitalization, the time you stay there for follow up, and possibly the price of trip and stay for the person who accompanies you.

So maybe you're a citizen of that other country, and can have things done there that you can't have done in the UK.

I would never, ever take a trip abroad to have any kind of surgery with a person who hasn't seen me in person.

Never.

[vandownbytheriver]

Thanks a lot for such a detailed post!
...
The O2 Ring sounds a good first port of call. Having looked they sell the O2Ring here in the U.K., but it isn't cheap, as you say; there seem to be a lot of overnight Oximeters on the market at under half that price, but it's difficult cutting through the descriptions to see what the true differences are. Was there a specific feature/quality you bought the O2Ring for?

I have two 'gurus' I follow on YT... Jason and Nick. Nick recommends the O2Ring, Jason recently came out against O2 'wearables' as not needed. At this point I'm just wearing it to geek out on how I'm doing... but if I were experimenting with CPAP I would prefer to have one... the lab puts one on you (more of a lab model) when you do a study. There are other options as you've noted, I've had good luck with the Ring... when the battery dies after a year of use I'll probably hack it and put a big ugly battery on it like I did my dash-cam.

We actually have a marketplace called Gumtree here in the UK that's very similar to Craigslist and there are quite a lot of Resmed Airsense 10 Autoset models on there for sale. These are all labeled as CPAP, though. I presume the 'Autoset' part in the name means they can do APAP, but what about VPAP? I've had a quick look but am unsure of the difference between VPAP and CPAP, only that the V means variable.

There's straight CPAP (one pressure setting), APAP (automatic in a pressure range), and bi-level/biPAP (two pressures, in and out, with auto options as well). Not sure about VPAP, I'm assuming it's like APAP. EDIT: just looked it up, it's basically bi-level or biPAP. I use a bi-level machine, many folks on here do... it's a superior form of therapy.

What do you mean by sink back down? As in it keeps changing the pressure throughout the night?

The way APAP works, the machine is given a range it can play in. Factory default is 4-20cm, a way stupid wide range. After a few nights in this crazy range the intent is to look at the pressure graphs and determine the best therapeutic pressure, or at least to narrow the range. Most folks find that they do best at a single pressure, there are some that prefer a range.

Here's a set of graphs from when I was using an APAP range... 14-20cm. As you can see the FL's pissed it off enough to take me to 18cm. The H's didn't even register a bump on the pressure, the FL graph tends to look like the Pressure graph:

https://sleephq.com/public/b6e690d0-c9b ... 833cb6f064

The machine watches your breathing and does mathematics on the waveforms... it's looking for what it thinks are flow limitations (FL's), a 'flat-topping' of the breath graph. It will fight these by upping the pressure if they are seen. It also watches for obstructive apneas (OA's) and hypopneas (H's) and raises the pressure up when it sees them. Snoring really pisses it off, it will try to stop the snoring by again, raising pressure. The events are flagged and the snoring graphed. One more event type, the Clear Airway or Central Apnea (CA), does not result in higher pressure... they are just flagged and counted, they are not obstructive in nature.

After the machine raises the pressure it watches for continued events/snoring... if it sees none the pressure will slowly fall back down. This means that, in order to maintain a pressure where you're not having problems, you have to have problems. I find that I sleep best when I never have the problems, therefore I don't use the auto feature of my machine, I've got my pressures (bi-level) set at one place (21/17cm) and that's where I live, breathing in at 21 and out at 17. These are high pressures but I sleep great... they do take some getting used to. I went to a real sleep lab and paid a lot of money to have someone baby-sit me all night and adjust the machine until I hit the sweet spot... they specifically asked me to spend the last part of the night on my back, the worst position for OSA, so that they could go for a good non-positional setting. After decades on my side I now sleep wherever.

Here's a recent night on my bi-level machine, notice the difference in both O2 and FL:

https://sleephq.com/public/88256123-113 ... 86a5292573

[LG1819]

There's straight CPAP (one pressure setting), APAP (automatic in a pressure range), and bi-level/biPAP (two pressures, in and out, with auto options as well). Not sure about VPAP, I'm assuming it's like APAP. EDIT: just looked it up, it's basically bi-level or biPAP. I use a bi-level machine, many folks on here do... it's a superior form of therapy.

So if a biPAP machine is superior, what would you say I'm trading off if I get regular CPAP?

The way APAP works, the machine is given a range it can play in. Factory default is 4-20cm, a way stupid wide range. After a few nights in this crazy range the intent is to look at the pressure graphs and determine the best therapeutic pressure, or at least to narrow the range. Most folks find that they do best at a single pressure, there are some that prefer a range.

Here's a set of graphs from when I was using an APAP range... 14-20cm. As you can see the FL's pissed it off enough to take me to 18cm. The H's didn't even register a bump on the pressure, the FL graph tends to look like the Pressure graph:

https://sleephq.com/public/b6e690d0-c9b ... 833cb6f064

The machine watches your breathing and does mathematics on the waveforms... it's looking for what it thinks are flow limitations (FL's), a 'flat-topping' of the breath graph. It will fight these by upping the pressure if they are seen. It also watches for obstructive apneas (OA's) and hypopneas (H's) and raises the pressure up when it sees them. Snoring really pisses it off, it will try to stop the snoring by again, raising pressure. The events are flagged and the snoring graphed. One more event type, the Clear Airway or Central Apnea (CA), does not result in higher pressure... they are just flagged and counted, they are not obstructive in nature.

After the machine raises the pressure it watches for continued events/snoring... if it sees none the pressure will slowly fall back down. This means that, in order to maintain a pressure where you're not having problems, you have to have problems. I find that I sleep best when I never have the problems, therefore I don't use the auto feature of my machine, I've got my pressures (bi-level) set at one place (21/17cm) and that's where I live, breathing in at 21 and out at 17. These are high pressures but I sleep great... they do take some getting used to. I went to a real sleep lab and paid a lot of money to have someone baby-sit me all night and adjust the machine until I hit the sweet spot... they specifically asked me to spend the last part of the night on my back, the worst position for OSA, so that they could go for a good non-positional setting. After decades on my side I now sleep wherever.

Got ya, thanks for the comprehensive explanation.

I take it that the auto machines can also be set to provide a continuous pressure? So that once you've determined a pressure that works for you, you can then switch off the auto feature and keep the machine at a sustained level.

[ChicagoGranny]

So that once you've determined a pressure that works for you, you can then switch off the auto feature and keep the machine at a sustained level.

You're giving up some of the technological advantages. We sleep and breathe differently each night and during the night. For example, 10.0 might be a good pressure one night. But on a few other nights, 11.0 or 12.0 might work better because of your daytime activities or what you ate or drank. Similarly, 10.0 might work for much of the night, but when you go into REM sleep, you might need 11.0 or 12.0. APAP will adjust for changing conditions.

So where will you set your single pressure? 10.0 means you won't get the best therapy on certain nights or in certain stages of sleep. 12.0 means you use a higher pressure than needed most of the time. Higher pressures affect comfort and sleep quality.

Here's a real case in my own family. Gramps' pressure most nights ranges between 10.0 and 12.0. Last year he had a cold, and his APAP took the pressure up to 14.0 a few times. That gave him optimal therapy.

I recommend you get advice on this forum from several members.

APAP pressure settings are the most popular for good reasons.

[vandownbytheriver]

APAP pressure settings are the most popular for good reasons.

Another educated opinion on APAP:

https://www.youtube.com/watch?v=DuZCByiG1nU