Six year nightmare UARS??

[Matty662]

Hi I’ll try to keep this shortish without it being like an essay. My names matt I’m 28 and I’ve been struggling with sleep for 6 years now. It first started 6 years ago I gained a lot of weight and started snoring. Since then I have lost about 21kg in weight and the snoring had reduced to mild to moderate occasional snoring.

But I have still been struggling with sleep problems even after the weight loss and throughout the 6 years have had several sleep studies. 2 basic finger ones which came back negative. One polysomnograph which only recorded two hours of sleep and was told it came back negative.

I’ve rented a home sleep study with a cannula that goes up your nose to measure airflow and my ahi score was 8.6. I was then referred and had another home sleep study from the hospital which was a finger pulse oximetry thing and the doc said it came back negative that my o2 dropped to 95% and that it had to drop below 80% for treatment.

Recently I’ve had another home sleep test which I paid for and it showed snoring and a pRDI score of 40 ahi 3 and 8 awakenings during the night.

I think I have upper respiratory airway syndrome as my symptoms mimic that of sleep apnea but keep getting told I don’t have apnea. So I’ve had a consultation for laser assisted uvulo palatoplasty and the doc said I have narrow throat large tongue as there are bite marks. I also have a mild deviated septum but he said that this was not a big problem as the main area of concern is Mymensingh throat. He recommended that he uses a laser to cut in the middle of my uvula so that when I breathe the uvula splits into two allowing air to flow through.

I live in the uk and this costs £1980. I also have a letter from my gp (doctor) that allows me to buy a cpap machine privately. I’m not sure what to do and need advice please.

My main concern with the surgery is that my uvula is not enlarged so if it is split in two it will only create a small hole for airflow. Should I go ahead with surgery or buy a cpap? But I don’t really wanna use a cpap for the rest of my life either.

[mangos21]

you might be better off buying a cpap/apap and trying it on your own

[Snoregone Conclusion]

Every surgery has risk, up to and including fatality, depending on the situation, however absurdly rare that may be, either during the surgery itself, or possible complications afterwards like infection: anyone that tells you a surgical procedure has absolutely no risk is a damned fool and an idiot.

Also, you can’t completely (if at all) reverse the side-effects of surgery as you wish, if it doesn’t work out. Note that more often than not, scar tissue forms, and where things are cut, nerves are affected, and you can’t be 100% certain what that will be like immediately or long-term as a result. You may feel nothing, or a tingling, or other things where nerves are concerned, after surgery (I’ve had jaw surgery, advanced my lower jaw 7 mm and 1.5 mm to one side, it had nerve side-effects, common) which may or may not recover back to the previous state of functioning. In other words: if your body is in a state of being too easily aroused by sensory inputs to let you sleep, it’s impossible to predict how this will play out, as it might go great and forever not be a problem, or it might be great at first, but the nerves grow back and not the way hoped, or it may be horrible from the start.

On top of that, tissue that grows back tends to have stiffer scar tissue around it, and if the surgery didn’t entirely solve the problem, you’ll still need a machine, and it is then harder to treat with the machine, if it can be at all.

If you try the machine first, and find it doesn’t help (it may not completely keep you from waking up, but it should help greatly reduce the frequency) that’s 100% reversible: just stop using that machine, perhaps try one of the mandibular advancement devices or whatever. I’d suggest renting out machines and methodically measuring results and adjusting as needed to see if that can be helpful. I’ve read on apneaboard.com (I think it is) how BiLevel is the most effective treatment, at some high pressures (ymmv). I’m currently using APAP with maxed regular pressure and EPR of 3 to come as close as I can to what I saw there, and while I’ve certainly (from data, memory) not slept more than 4 hours without being consciously awake (typically at the end of a sleep cycle in REM sleep) the quality of the sleep I get has greatly improved. It’s still suboptimal from a normal natural sleep, but notably better than the natural state I’d get now.

Also ask people that have had such surgery how nasty the pain and recovery was, and long-term side-effects, and consider that.

[Okie bipap]

I had UPPP surgery about 20 years ago. I also had a badly deviated septum corrected and turbinate reduction done at the same time. As stated earlier, this is a very painful surgery. I like spicy foods, and was unable to eat anything even slightly spicy for three or four years because it burned my throat too much. I never had a follow up sleep study done right after my surgery. It seemed to relieve most of my symptoms (snoring, daytime sleepiness, etc.) for several yeas. In 2014 I had a knee replaced, and the nurses made a note in my records that my blood oxygen was dropping every time I went to sleep. As a result, I had sleep studies performed, and am now using a bi-level machine with relatively high pressure. My pressure normally stays around 17 cm after I got my treatment tweaked. When I first started treatment, my pressure was set for 20 - 25 cm pressure which is the max pressure the machine will do.

[Matty662]

Hi thanks for the replies guys. So post op will experience sore throat maybe bleeding maybe mild infection.

I can’t use a MAD because I have TMJ problems and currently using a splint. I have rented a Bipap before and one night I slept for 7 hours before condensation occurred. I struggled with leaks and irritation and to be honest am abit afraid of using a CPAP incase I don’t get used to it.

Let’s say I was going to buy a machine would it be best to get an Apap as I don’t know my pressure? Also as I live in the UK how will I get my machine err what’s the word serviced??

[Jas_williams]

No servicing needed just filters available online or direct from Resmed I have a used Resmed Autoset 10 with humidifier and climateline hose and bag (907 run Hours ) for £400 under 4 months use and about 1 yr warranty Left I bought it direct from Resmed Last year cost me £600 but I needed an ASV machine so it was replaced.


In some UK Trusts they will provide a cpap for free but policy is decided on a trust by trust basis.


You may find that a Resmed Bipap vauto will be more suitable but UARS is different on a person by person basis until you have a full data machine and can post data and tell us how you feel its very hard to give recommendations. What was the detail in the prescription from your Dr ?

[palerider]

would it be best to get an Apap as I don’t know my pressure?

It's always best to get an APAP, because needs change from night to night, and even throughout the night.

[Snoregone Conclusion]

By far, the more rational fear is the surgery with short-term and long-term side-effects not working out: surgery isn't that readily reversible for side-effects if at all.

I can't urge enough, having had a number of surgeries for different things, that you try with a machine first and try to work through whatever issues you run into. From what you've just stated, you slept 7 hours on a Bipap before condensation issues occurred: THAT IS AN EASY THING TO FIX! Humans can learn to adapt to many things as regular, but changing your anatomy in such a manner may not be something that works out in a way you can adapt to as need be. You only used it ONE NIGHT and are basing your entire decision to go through with potentially-devastating surgical life-altering consequences because you got detectably wet, while also sleeping through 7 hours (I've not done that in... not sure how many years)? That's pure madness!. Don't be a quitter with such a minor trial and failure, that won't serve you well.

From what you've stated, and what I've read, it seems your best solution would be an auto-bipap with heated humidifier and heated hose. I don't know how they do things there in the UK, but in the US, the general practice is to have insurance require you to rent out the machine month-to-month and prove compliance before it becomes yours, as reimbursed via insurance in 10 months (that's how mine works). It doesn't cost that much to rent month-to-month, and it is a huge amount cheaper than covering any surgery will be, so insurance companies prefer that before surgery is considered in the US. The bonus is that during the trial period, if compliance is shown and it's determined you need a different machine or no machine works, then it's easier to get approval to try other things, including expensive surgery (there is no cheap surgery, really...).

[Matty662]

Ok so I don’t have an actual prescription as such but a letter from my doctor stating that he would allow me to buy a cpap. I have not been tested for UARS as most sleep studies only detect sleep apnea, snoring and restless leg syndrome. I have not been diagnosed with sleep apnea and therefore I will have to pay for a machine myself.Also I have cancelled my surgery and received a full refund which is good so am on the look out for a machine.

I don’t know my pressure settings so it sounds like I should get an APAP? But then I hear people say they cant adjust to that because the changes in pressure wake them up (low pressure and then the sudden increase in pressure). Bipap are so expensive so I’m not sure if I can afford that. I found one which costs £995

I also experienced other problems such as mask leaks etc and then should I get a nasal mask with a chin strap or a full face mask? I don’t think I should use nasal pillow masks as I suffer from chronic rhinitis. Note I am a side sleeper.

Thanks again the replies any advice much appreciated.

[Julie]

Whew (about your cancelling the surgery)! You can always reschedule, but not bring back what no longer exists (or has been replaced by what you don't want).

Get an Apap and we'll help you get set up... but get one that can be used with e.g. Sleepyhead software so we can see what's going on overnight(s). Whoever mentioned not being able to adjust to the changing pressures was not set up properly or at least not followed up with correctly... for one thing even if at 'the other end' of experimentation you find using Cpap is better for you, Apap's can do that, but plain Cpaps don't have an Apap mode so you'll have cheated yourself out of the more popular option. I suggest you look at the latest ones on Cpap.com for variety, reviews, pix, etc. and then ask here before buying (anything, anywhere) to see if you've made a good choice.

One thing I strongly suggest is that you PM Rick Blaine (of the UK) on the forum here - he's very knowledgable about all things over there and how some might work differently from those here, including where to look for machines more cheaply than buying new.

I also suggest trying various masks, full face and otherwise, if only to have on hand for times you have a cold (or rhinitis and need to mouth breathe but don't want to lose therapy air), tho' be prepared to change out if the first one (or 2 or 3) doesn't work well for you - it's one thing we can't recommend as all faces are diff. and only you can assess that (but do try them on lying down as faces change a lot then).

Not everything will work well from day one (or at least it's unlikely) but give things a chance and always try new stuff one at a time for at least a few days so you'll know which changes cause what results.

[Snoregone Conclusion]

Perhaps some UARS cases can be successfully treated with the less expensive APAP: I’m testing that out now, but it’s not looking probable to resolve it to sleeping through the night like you did with BiPAP on your one night test with 7 hours before you had the easily fixed issue of condensation. Almost a month in, changing minimum pressure to wipeout flow limitations and snores, and the most I’ve managed is about a 4 hour stretch without being conscious of fully waking, only 2-3 times in the first month. Even then, I needed to be very tired to have that happen.

Dr. David Krakow has done testing and experimentation and claims great success with BiPAP with UARS: the data suggests you’d likely be better off going straight to BiPAP first because you found it worked on the first night. An auto BiPAP can be used in regular APAP or CPAP mode if desired. Maybe your case will work on simpler machines but you need to consider the trade offs of going with an initially more expensive known-good solution over the chance to save some money but fail to solve the problem without needing to go with the more expensive solution later, losing money on reselling the lower-end device.

[Pugsy]

Contact this guy in this thread
viewtopic/t173503/Victim-of-centrals-only.html
He's going to probably want to sell his current machine.....AirCurve 10 VAuto with very low hours on it.
I think he is a little East of the UK but doable.

Oh....apaps don't increase the pressure rapidly like you hear people talking about. Any increases are very gradual. They look faster than they are on the software reports.

[bonum.noctem]

Hi Matt, I've sent you a PM.

[Matty662]

Hi guys,

Yeah im thinking about getting the ResMed AirSense 10 auto as most people seem to be suggesting that. Thanks Julie I will contact Rick and I suppose I will have to experiment with different masks.

Just to let you guys know I didn’t rent a machine for one day and managed to sleep 7 hours. I rented for 2 months and a lot of experimentation before I was able to sleep 7 hours.

Snoregone thanks for the advice but I don’t think I will get a bipap as I think, correct me if I’m wrong, but an APAP has the same functions but without the cpap mode obviously. To be honest I can’t remeber which mode I used for the 7 hours as I tried both haha.

Thanks pugsy but I think I’d rather buy a brand new one.

[Jas_williams]

Matty as I said earlier I have a used machine used for about 4 months (900 hrs) for £400 but if you want to buy new then work away you can purchase direct from Resmed for about £600 + mask and stuff my total bill was £800