Ok, Enough's Enough.. Surgery Advice please :(

RicaLynn wrote:Yep, NOPE.

As a healthcare worker who has assisted with and performed trach care (which must be done with sterile technique daily) it's not something I would consider short of life-saving necessity, which I assure you for our condition it is not.

I am also a mouth breather (had the stained pillows to prove it) and have successfully used nasal pillows and only occasionally a chinstrap since I started pap therapy 3+ years ago. It wasn't always easy; the first couple weeks my nose was pretty sore, but with a little TLC and a lot of great advice from Pugsy and the rest of the folks here I got through the worst of it and I sleep soundly every night.

Mask selection is probably the SINGLE most difficult part of starting pap therapy and I know full well I got extremely lucky (I had a great RT who was also a user, it does help when they know what they're peddling). Three months is a long time to go with a sore nose, I understand that, but in the grand scheme of things it's not enough time to say you've given it a full go. I'm glad to read that you're willing to reconsider, and I encourage you to think outside the box a bit with your mask choices; you may surprise yourself at what finally clicks for you. Keep us posted.

I consider my cpap a life saving piece of equipment for my apnea and copd. as far as trach is concerned, that should be discussed between a patient and doctor and not strangers in a forum. I personally know a long distance truck driver that had a trach about 20 years ago for his apnea and has no regrets or complaints. although it is almost a taboo subject among cpap users, it is an option for some people. If the OP goes to his doctor and says he wants a trach because nothing else works, the doc will help him figure something out.

I have already posted what masks i have tried however i will do it again as previously i was addressing people individually so not everyone may have noticed. I'll also clarify my experiences

1) F&P Simplex
Created a valley in the bridge of my nose. It was the Sleep Doc's suggestion to try another mask

2) Amara View
Leaked where the nose at on the opening at the top to the point where frustration meant that the only way to sleep was to slip the nose into the mask - with the resulting pressure and moisture causing the nose to start to go icky and slowly dissintigrate. Now permanently scarred.

3) Resmed Quattro
The best so far but with mixed and unpredictable results. Creates a pressure point at bridge of my nose resulting in a sore and bruising which then scabs over causing pain when the mask is applied meaning that using it is impossible... upon seeing my nose at my last hospital visit the sleep doc immediately said that something was wrong with the fitment and suggested this....

4) F&P Oracle 452
First night was good however upon washing it for the next night i found that the part that goes in the mouth now easily slides off the shaft that blows the air through it into your mouth.. resulting in the air farting all around it. Advice from a youtube video had suggested that people with this mask have good results with swimming nose clips.. i now have two huge open sores either side of my nose and now refuse to go out and socialise as everyone stares.

@rick blaine - Hello. I appreciate your input however get the impression from the way that your post reads that you're having a slight dig at me as your initial comments seem to suggest that i stop complaining. If i've misunderstood this i apologise in advance. I didn't ask to be given the machine which you've said that i have. The first one supplied was a fixed pressure one and tbh if that was my only option then i wouldn't be here now as i'd have given up straight away. The hospital have vast quantities of my machine so i guess that they have adequate demand to supply it. you say that i've "been prescibed - that is GIVEN" the masks. To clarify i didn't ask for these masks and expressed my concern to the Sleep Docs about them randomly opening masks just for me to 'try and see how it goes'. They didn't even use any form of sizing guide which i've only just realised exist. I'm not complaining about the treatment from the NHS here either - i asked for advice about the topic of this thread. I also said in my last thread that i'd decided thanks to the input from the forum members that i would give more time to the CPAP which is what i intend to do. I only have the Quattro and Oracle in my possession and that was on the Sleep Docs advice as his thoughts were that i was to try the oracle until the sore healed on the bridge of my nose after which time i could alternate them both. I don't know what they did with the Amara View and the Simplex as they took them off me at the hospital.

I'vs lost track... but have you tried the mask liners, e.g. Padacheek.com ones, to see if they can help with leaks, marks, etc. for at least a few of the masks you've tried and had trouble with?

Hello, the moleskin has arrived today!! Do i cut it to a specific shape or just like a plaster (band aid)??

SolisQuaesitor71 wrote:Hello, the moleskin has arrived today!! Do i cut it to a specific shape or just like a plaster (band aid)??

Just size to cover the sore area, a little bigger. I got by with a bandaid, your body will toughen up, then you won't need it. Don't over tighten the mask, set forehead support "T" to keep the pressure as light as possible. Jim

Goofproof wrote:

SolisQuaesitor71 wrote:Hello, the moleskin has arrived today!! Do i cut it to a specific shape or just like a plaster (band aid)??

Just size to cover the sore area, a little bigger. I got by with a bandaid, your body will toughen up, then you won't need it. Don't over tighten the mask, set forehead support "T" to keep the pressure as light as possible. Jim

Thanks, the problem setting the T light is that if i move my head slightly sideways i get leaks

It sounds very frustrating. I had an issue with sores on my nose when first started sleeping with a nasal pillow. I had this idea that the thing had to be really tight to my face so was using a small nasal pillow and the head strap super tight. I decided to go up a size and loosen the strap and the sores healed up. As for the swimmers pin to close off your nose, probably not necessary if you are a normal mouth breather. There are many complications associated with surgery of every type. I also did some research about reconstructive surgery and found conflicting evidence as to whether it helps at all. I would be very interested to hear from someone who has had successful surgery.

nolongersleepless wrote:It sounds very frustrating. I had an issue with sores on my nose when first started sleeping with a nasal pillow. I had this idea that the thing had to be really tight to my face so was using a small nasal pillow and the head strap super tight. I decided to go up a size and loosen the strap and the sores healed up. As for the swimmers pin to close off your nose, probably not necessary if you are a normal mouth breather. There are many complications associated with surgery of every type. I also did some research about reconstructive surgery and found conflicting evidence as to whether it helps at all. I would be very interested to hear from someone who has had successful surgery.

Chances are...If someone had successful surgery, they are no longer on this CPAP forum.

SolisQuaesitor71 wrote:Hello, the moleskin has arrived today!! Do i cut it to a specific shape or just like a plaster (band aid)??

Just don't let the adhesive touch the sore. I have cut a strip large enough to cover the sore and extend to unharmed skin on either side and then removed the moleskin that covers the sore.
Alternatively, cut a strip a little larger than the wound and adhere it to the mask.

SolisQuaesitor71 wrote:I have already posted what masks i have tried however i will do it again as previously i was addressing people individually so not everyone may have noticed. I'll also clarify my experiences

1) F&P Simplex
Created a valley in the bridge of my nose. It was the Sleep Doc's suggestion to try another mask

2) Amara View
Leaked where the nose at on the opening at the top to the point where frustration meant that the only way to sleep was to slip the nose into the mask - with the resulting pressure and moisture causing the nose to start to go icky and slowly dissintigrate. Now permanently scarred.

3) Resmed Quattro
The best so far but with mixed and unpredictable results. Creates a pressure point at bridge of my nose resulting in a sore and bruising which then scabs over causing pain when the mask is applied meaning that using it is impossible... upon seeing my nose at my last hospital visit the sleep doc immediately said that something was wrong with the fitment and suggested this....

4) F&P Oracle 452
First night was good however upon washing it for the next night i found that the part that goes in the mouth now easily slides off the shaft that blows the air through it into your mouth.. resulting in the air farting all around it. Advice from a youtube video had suggested that people with this mask have good results with swimming nose clips.. i now have two huge open sores either side of my nose and now refuse to go out and socialise as everyone stares.

@rick blaine - Hello. I appreciate your input however get the impression from the way that your post reads that you're having a slight dig at me as your initial comments seem to suggest that i stop complaining. If i've misunderstood this i apologise in advance. I didn't ask to be given the machine which you've said that i have. The first one supplied was a fixed pressure one and tbh if that was my only option then i wouldn't be here now as i'd have given up straight away. The hospital have vast quantities of my machine so i guess that they have adequate demand to supply it. you say that i've "been prescibed - that is GIVEN" the masks. To clarify i didn't ask for these masks and expressed my concern to the Sleep Docs about them randomly opening masks just for me to 'try and see how it goes'. They didn't even use any form of sizing guide which i've only just realised exist. I'm not complaining about the treatment from the NHS here either - i asked for advice about the topic of this thread. I also said in my last thread that i'd decided thanks to the input from the forum members that i would give more time to the CPAP which is what i intend to do. I only have the Quattro and Oracle in my possession and that was on the Sleep Docs advice as his thoughts were that i was to try the oracle until the sore healed on the bridge of my nose after which time i could alternate them both. I don't know what they did with the Amara View and the Simplex as they took them off me at the hospital.

Thanks for that. Of the masks you've tried, I've only used the Amara View, so assuming you still have it, I'll address your comments. When you "slipped your nose inside it," you weren't using it as it is designed, and it putting pressure where there should be none and causing a sore isn't surprising. The nose rests lightly in that "cradle" made for it and the mask inflating with pressure causes the seal. Yes, it is finicky, and the "human nature" reaction is to over-tighten it when it leaks or "seeps," that is one mask where the 4 straps have to be tweaked with a light touch, small movements with patience, to get right. However, and this is key, performance of that mask improved significantly with a Pad-a-cheek mask liner (or similar). The mask liner addresses the moisture between your skin and the mask seal and, if there is leakage, it diffuses it very well so that you don't notice it. If you have it or ever have an urge to try that again, a mask liner will likely address the issues you had with it.

edfreeman wrote:

SolisQuaesitor71 wrote:I have already posted what masks i have tried however i will do it again as previously i was addressing people individually so not everyone may have noticed. I'll also clarify my experiences

1) F&P Simplex
Created a valley in the bridge of my nose. It was the Sleep Doc's suggestion to try another mask

2) Amara View
Leaked where the nose at on the opening at the top to the point where frustration meant that the only way to sleep was to slip the nose into the mask - with the resulting pressure and moisture causing the nose to start to go icky and slowly dissintigrate. Now permanently scarred.

3) Resmed Quattro
The best so far but with mixed and unpredictable results. Creates a pressure point at bridge of my nose resulting in a sore and bruising which then scabs over causing pain when the mask is applied meaning that using it is impossible... upon seeing my nose at my last hospital visit the sleep doc immediately said that something was wrong with the fitment and suggested this....

4) F&P Oracle 452
First night was good however upon washing it for the next night i found that the part that goes in the mouth now easily slides off the shaft that blows the air through it into your mouth.. resulting in the air farting all around it. Advice from a youtube video had suggested that people with this mask have good results with swimming nose clips.. i now have two huge open sores either side of my nose and now refuse to go out and socialise as everyone stares.

@rick blaine - Hello. I appreciate your input however get the impression from the way that your post reads that you're having a slight dig at me as your initial comments seem to suggest that i stop complaining. If i've misunderstood this i apologise in advance. I didn't ask to be given the machine which you've said that i have. The first one supplied was a fixed pressure one and tbh if that was my only option then i wouldn't be here now as i'd have given up straight away. The hospital have vast quantities of my machine so i guess that they have adequate demand to supply it. you say that i've "been prescibed - that is GIVEN" the masks. To clarify i didn't ask for these masks and expressed my concern to the Sleep Docs about them randomly opening masks just for me to 'try and see how it goes'. They didn't even use any form of sizing guide which i've only just realised exist. I'm not complaining about the treatment from the NHS here either - i asked for advice about the topic of this thread. I also said in my last thread that i'd decided thanks to the input from the forum members that i would give more time to the CPAP which is what i intend to do. I only have the Quattro and Oracle in my possession and that was on the Sleep Docs advice as his thoughts were that i was to try the oracle until the sore healed on the bridge of my nose after which time i could alternate them both. I don't know what they did with the Amara View and the Simplex as they took them off me at the hospital.

Thanks for that. Of the masks you've tried, I've only used the Amara View, so assuming you still have it, I'll address your comments. When you "slipped your nose inside it," you weren't using it as it is designed, and it putting pressure where there should be none and causing a sore isn't surprising. The nose rests lightly in that "cradle" made for it and the mask inflating with pressure causes the seal. Yes, it is finicky, and the "human nature" reaction is to over-tighten it when it leaks or "seeps," that is one mask where the 4 straps have to be tweaked with a light touch, small movements with patience, to get right. However, and this is key, performance of that mask improved significantly with a Pad-a-cheek mask liner (or similar). The mask liner addresses the moisture between your skin and the mask seal and, if there is leakage, it diffuses it very well so that you don't notice it. If you have it or ever have an urge to try that again, a mask liner will likely address the issues you had with it.

Although it's worth noting that if it "leaked too much" and he was able to "fit his nose inside" then he may possibly have the wrong size cushion.

Thinking outside of the box here. A mask that is not used much but one you might look at is a nasal prong type. I used one many years ago for a couple of years. A problem with these is that size matters, too large and it can rub nares.

I am UK based too, and safe to say the NHS is very much postcode lottery when it comes to sleep apnoea. Unsurprisingly! Which clinic are you with - I'm Edinburgh. When i adjusted my pressures i got knowing looks but no comments - they are not supposed to endorse us self managing, but the good staff acknowledge that for some of us it is the best option, especially with such infrequent reviews. There's some with local support groups which can help.

It might be that none of those masks is 'perfect' - I have three i alternate between, along with mask liners and good skin care that helps to stop any pressure marks/ sores. It sounds like a couple of the masks have been ok for a short time, so switching between those ones might be more successful.

Getting the right liner is important too - I make my own from t shirts but you can buy them or make with socks, tubigrip etc. The moleskin is a popular option too and a bit thicker so can be more protection.

If you have not found hope2sleep yet, they are UK based charity providing support and a shop. If you are local to them you can try before you buy as well. They have supported lots of people with similar sores to your self, and have probably got more hands on experience than a lot of clinical staff as many of them are directly affected by apnoea too, but customer service is top notch too, they don't promote self management though as then the nhs will be less likely to work with them.

Diamondminek wrote:I am UK based too, and safe to say the NHS is very much postcode lottery when it comes to sleep apnoea. Unsurprisingly! Which clinic are you with - I'm Edinburgh. When i adjusted my pressures i got knowing looks but no comments - they are not supposed to endorse us self managing, but the good staff acknowledge that for some of us it is the best option, especially with such infrequent reviews. There's some with local support groups which can help.

It might be that none of those masks is 'perfect' - I have three i alternate between, along with mask liners and good skin care that helps to stop any pressure marks/ sores. It sounds like a couple of the masks have been ok for a short time, so switching between those ones might be more successful.

Getting the right liner is important too - I make my own from t shirts but you can buy them or make with socks, tubigrip etc. The moleskin is a popular option too and a bit thicker so can be more protection.

If you have not found hope2sleep yet, they are UK based charity providing support and a shop. If you are local to them you can try before you buy as well. They have supported lots of people with similar sores to your self, and have probably got more hands on experience than a lot of clinical staff as many of them are directly affected by apnoea too, but customer service is top notch too, they don't promote self management though as then the nhs will be less likely to work with them.

Thank you for your clarification regarding the NHS. I was starting to feel guilty about having been given a machine which is automatic. I'm with Lancashire NHS and wasn't given an auto machine until i was experiencing excessive wind the following morning. Did you get the mask liners from Hope2Sleep? I had no idea they were a charity and am don't live near them but the only liners that i could see were branded 'Silent Night' and didn't seem specifically listed for the Resmed Quattro. Still, i think i'll contact them about the pressure sores as they may have some ideas. I've been advised to get something called 'pad a cheek' but think they're made by one person in the USA... Still if it works would be worth it.
I tried making a liner from a t-shirt using a template but it didn't really work and rarely stayed in place. The moleskin that i tried stuck to my 'wound' at the top of my nose and because it was quite thick air still leaked around it.
As i've said before i don't know the real legalities of tampering with a Cpap machine and am wary of it. I did adjust the starting pressure after advice from the forum however when i had my last visit the sleep doc noticed the pressure was different and i felt quite uneasy with the way that he looked at me. There's also DVLA to consider as they've said that i can drive however must have 4 hours sleep per night and not (obviously) drive if tired, what they'd do if i'd messed with the machine i dread to think.

Hey, I know just how you feel. I, too, contemplated the trach - why not?

Look, for me, it took me 2 years to get used to the therapy. Yup - 2 years. Now, I cannot sleep well without my mask. Still don't feel GREAT, but I definitely feel crappy if I do not use it.

I have a Bi-pap machine. The continuous flow just was too much for me.

So, what I did was this. I used the machine every night. If I woke up, I would try and go back to sleep. If I could not go back to sleep with the machine on, I just took it off and slept without it. I did that every night. Eventually I got used to it..... but it did take 2 years for me.

Here's something to ponder... when I first had my machine, I could not speak when it was on..... just could not do it. Now, I can. I believe my throat just got stronger to be able to control things.

Good luck