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

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
amenite
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Re: Ok, Enough's Enough.. Surgery Advice please :(

Post by amenite » Sun Jan 07, 2018 1:00 pm

SolisQuaesitor71 wrote:...
Do you all find that you know that when you go to bed that you'll sleep well all night? Have any of you had similar problems to myself with injury to the nose? Just wondering if i'm just having bad luck
I've been through several masks/pillows, and have good enough results without the damage that you're indicating. Have you considered a "total face mask" ? Something like this, and I think there are few others too:

https://www.cpap.com/productpage/total- ... onics.html

You seem like a good candidate, they are less common but some swear by them.

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

Post by Wulfman... » Sun Jan 07, 2018 3:14 pm

SolisQuaesitor71 wrote:Please bear with me on this it's only my experience and not representative of others..

Basically, i started CPAP beginning of October. I went through 3 masks (the Quattro being the best so far) but always had side effects concentrated on pressure sores to the nose. Thinking there were no other options available my Healthcare provider gave me a Fisher & Paykel Oracle to try as i'm a mouth breather. The first night this was great but (thanks to a youtube review recommendation) i tried it with a swimming nose peg and woke the following morning with pain and subsequently abandoned the whole thing for the evening.

Next day i have a swollen nose, 3 blisters which are weeping yellowish water for the day and pain in either side of my nose. The day after (today) i have a crusted yellow scab over both sides of my nose and it hurts like hell.

At this point i've really had enough.. There's no consistancy to the treatment and understandably every face is different and i understand that a mask can't cater for everyone.

So i'm now considering the extreme option as my face is basically disfigured and i just want to know that i'll go to bed and have a good sleep !!!!!!! (((((

One option that seems available in the UK apart from the soft tissue removal at the area affected is a trachaeostomy where they basically cut a hole in the throat to allow me to sleep at night... problem solved.. no apap, no mask, no physical damage apart from a valve in the throat and a good sleep.

The family are supportive though scared as am i to be honest.. but i don't wanna die in my sleep and love to wake with the body feeling so relaxed that i struggle to get out of bed.

Can someone offer guidance? Please don't suggest going back to the healthcare provider.. they really can't do any more and i've exhausted their resources..

I've tried my best with Cpap/Apap but i need to know that when i go to bed i'll sleep correctly

regards
You give up too easily.
SolisQuaesitor71 wrote:Do you all find that you know that when you go to bed that you'll sleep well all night?
Many of us don't "sleep well all night". As one gets older, nighttime "pit stops" are quite normal regardless of the quality of sleep.

I apologize if I missed the answers to these questions, but.....

What are all of your settings?
Are you using Sleepyhead software to monitor your therapy? If so, have you any reports that you can post on the forum?

Actually, from your profile, we don't even know what machine you're using.
Could you help us out by providing some information?


Den

.
Last edited by Wulfman... on Sun Jan 07, 2018 6:26 pm, edited 1 time in total.
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RogerSC
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Re: Ok, Enough's Enough.. Surgery Advice please :(

Post by RogerSC » Sun Jan 07, 2018 4:30 pm

Just to throw out another suggestion, the ResMed AirTouch F20 with memory foam cushion is much more gentle on one's face than the usual cushions. I have sensitive skin, and have tried it for a while. Sore spots were definitely not an issue. You can buy this one on cpap.com with free return insurance, so you get a while to see if you can get it fitted right.

Don't give up, you'll find one or more masks that'll work for you. A lot of us go through this, and do find masks that work for us. Personally, I favor nasal pillows masks, but am working on having a full face mask fallback.

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

Post by WearyOne » Sun Jan 07, 2018 6:18 pm

SolisQuaesitor71 wrote:

Do you all find that you know that when you go to bed that you'll sleep well al

l night? Have any of you had similar problems to myself with injury to the nose? Just wondering if i'm just having bad luck
I haven't had a good night's sleep in probably 20 years, and that is not an exaggeration. Maybe even longer. On CPAP it's much better than it was, but I still wake up feeling awful. Sleep doc's not sure why, as we've look at a few other possible causes (there are many things that can cause a bad night's sleep besides sleep apnea). The machine is doing it's job for me as far as apnea goes. I wake up a lot, usually for no apparently reason.

I remember not being able to use a mask that part of it was on the bridge of my nose as it made it sore and blew air in my eyes. But I never wore it long enough to get blisters or anything like that. My husband had that problem with his mask until he got a cushion for that area.

Have you looked at any of these? They all cover the nose and mouth. Not sure exactly where the sore parts of your nose are now, so don't know if you could try any of these until that heals up.

Hybrid: https://www.cpap.com/productpage/RespCa ... -Mask.html

Amara View: https://www.cpap.com/productpage/respir ... -mask.html

Liberty: https://www.cpap.com/productpage/resmed ... dgear.html

I've used the Hybrid for almost the entire 11 years I've been in CPAP.
.

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Mark55
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Re: Ok, Enough's Enough.. Surgery Advice please :(

Post by Mark55 » Sun Jan 07, 2018 7:44 pm

Try the Brevida nasal pillow setup that I use. I guarantee they will not make your nose sore in any way whatsoever,....no pressure sores,....no aching cartilage,.....no sore nares,......nothing!

You may have to use a chinstrap, a soft cervical collar, or even tape to stop mouth breathing, but your nose will never hurt again.

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

Post by LSAT » Sun Jan 07, 2018 8:55 pm

These posts must really confuse the OP...In just these few posts it's been recommended that he try............
Total Facemask
Air TouchF20 FF Mask
Amara View FF Mask
Hybrid Mask
Brevida Nasal Pillows
Dreamwear Nasal Mask

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

Post by SouthSeaPirate » Sun Jan 07, 2018 9:25 pm

I was also desperate at one point. To the point I thought the whole CPAP thing was total BS and gave up.
Over a year period after being diagnosed, I used my machine off and on with little success.
That is until finally I got the right combo for me.
I ended up with a nasal pillow, and like you, I was a mouth breather!
Couple that with the right settings (with help of those on this board), new filters, and heated hose.
You simply have not found the right combo.
Once you get it, you will never again want to go without!

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

Post by wm_hess » Mon Jan 08, 2018 1:32 am

SolisQuaesitor71 wrote:Please bear with me on this it's only my experience and not representative of others..

Basically, i started CPAP beginning of October. I went through 3 masks (the Quattro being the best so far) but always had side effects concentrated on pressure sores to the nose. Thinking there were no other options available my Healthcare provider gave me a Fisher & Paykel Oracle to try as i'm a mouth breather. The first night this was great but (thanks to a youtube review recommendation) i tried it with a swimming nose peg and woke the following morning with pain and subsequently abandoned the whole thing for the evening.

Next day i have a swollen nose, 3 blisters which are weeping yellowish water for the day and pain in either side of my nose. The day after (today) i have a crusted yellow scab over both sides of my nose and it hurts like hell.

At this point i've really had enough.. There's no consistancy to the treatment and understandably every face is different and i understand that a mask can't cater for everyone.

One option that seems available in the UK apart from the soft tissue removal at the area affected is a trachaeostomy where they basically cut a hole in the throat to allow me to sleep at night... problem solved.. no apap, no mask, no physical damage apart from a valve in the throat and a good sleep.
Hi

A trachaeostomy is jumping the gun a little bit I think!

I've been wearing a full face mask since I started. With the Quattro, I too had pressure sores on the bridge of my nose. I used a Gecko nosepad and it really helped with the sores. Resmed bought them out, and now they sell them. They're reuseable which is nice. Here is an ebay site selling them in the UK. https://www.ebay.co.uk/itm/Gecko-Nasalp ... wp6ihvyq1A. Respironics sells something similar, but their item is designed as a one use item.

Moleskin worked okay for me, and bandaids over the affected area provided some (but not much) relief. Once I switched from from the Quattro to the Quattro FX, the pressure sores went away. Of course like you mentioned, every body is different, and so are their faces.

Good luck and really reconsider the trachaeostomy. That is way to much, way to soon (Think 5lb sledge to attach a paper to the local bulletin board)

-Bill

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

Post by kteague » Mon Jan 08, 2018 2:11 am

I had a bad experience with an ill fitting nasal mask that made a pressure sore on the side of the bridge of my nose. A deep pus oozing sore. So I feel you on that. I stuck with nasal pillows for that very reason. While I was a mouth breather at night, there was nothing preventing me from nose breathing. Did it all the time when awake. Over time I was able to stop mouth breathing. Not sure if your nose breathing is hindered at all times or only when asleep. Your options are broader if you can get air through your nose. My brother who had a heck of a time trying all sorts of masks has settled on the total face mask that I saw someone else just post. He loves it. I understand your frustration. I just hope you can persevere till finding the right mask for you. If you happen to find you can tame the mouth breathing, the TapPap mask has been the most freeing mask for me. Now, if you have any dental work on the upper teeth, you might not be able to use it. But it has no headgear, the pillows are attached to a mouthpiece which cannot move because the space between your upper teeth and the nose never changes. Some can't stand sleeping with a mouthpiece but it is my mask nirvana. I hope you find yours. The search is not easy or cheap, but I don't have to tell you the value of decent sleep. Good luck.

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

Post by RicaLynn » Mon Jan 08, 2018 6:37 am

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.

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SolisQuaesitor71
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Re: Ok, Enough's Enough.. Surgery Advice please :(

Post by SolisQuaesitor71 » Tue Jan 09, 2018 1:57 am

Thanks for all of your posts which i took over an hour and a half to reply to, however whilst attempting to attach the Sleepyhead graphs something happened and the whole thing disappeared!

I'll be in touch when i return from work later.

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SolisQuaesitor71
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Re: Ok, Enough's Enough.. Surgery Advice please :(

Post by SolisQuaesitor71 » Tue Jan 09, 2018 1:59 pm

Ok, attempt number 2 at posting...

As already mentioned i've tried all the masks available to me, a basic Philips Respironics full face, the Amara View, the Resmed Quattro and the current one being the Fisher & Paykel Oracle. All have had problems however i do find that the Quattro offers the best nights sleep. I do have a Nose sore at the top however i have today ordered some Moleskin (for feet??) which i intend to somehow try to cushion the area. The last mask i found that after the first night and after washing it the piece that goes in the mouth starts to come away from the main unit and as a result, it leaks

For now thanks to all of your comments (i've read each one in detail) i'm going to wait and give more time to the CPAP. The last two nights (touch wood) have been good with a sleep that makes me struggle to get up in the morning as my body's so relaxed.

I'll certainly look into the nasal pillows if they are available in my country (UK). There isn't the option for me to keep my mouth shut - i've been a mouth breather my whole life and that isn't about to change, it's hard enough adjusting to a mask.

There is a suggestion that i need time to find my correct mask - these things are very expensive and i simply cannot afford to throw away such a large amount of money for something that may not be suitable and hence be unreturnable. I've tried a total face mask and felt both chlostraphobic and like i was in a fish bowl.

My machine is a System One with an attached humidifier. There's a small screen on it with an sd card in the back. I'll upload a sleepyhead graph of the last couple of nights.

I did see a similar review of a hybrid mask with nasal pillows however it wasn't a popular one as there were suggestions that it leaks.

I'll look into the Brevida setup that has been suggested. I'm not feeling very confused about all of the suggestions however if you add up the price of 'trying' all of these it's a lot of money.

Here are quite a few images of the data from my machine.. i hope they're of use, i can't make much real sense of it all.

http://i.imgur.com/pZsVD0ih.jpg[/img]
http://i.imgur.com/ybXdvP5h.jpg[/img]
http://i.imgur.com/QQCYHY2h.jpg[/img]
http://i.imgur.com/7TK1TZHh.jpg[/img]
http://i.imgur.com/dnrVi86h.jpg[/img]
http://i.imgur.com/UJjsqdLh.jpg[/img]
http://i.imgur.com/MIdwRMOlh.jpg[/img]

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

Post by edfreeman » Tue Jan 09, 2018 3:27 pm

Your persistence is paying off it appears. To my completely novice eyes on looking over the graphs and data, your tolerance for the mask and your therapy results seem to be trending in a good direction. I get that it isn't as easy on a budget as we make out to find your mask nirvana. I looked but couldn't find a UK supplier that had a 30 day return/refund policy like a couple of the sites here in the US. For now I'd keep using the mask that seems to be working and addressing the individual discomforts you are experiencing with it (much as you are).

The good folks here may be able to help you find better, but they'll need more info, I think. Maybe take each mask you've tried and tell us a few things you liked and disliked about them, we might be able to take that info and guide you towards (or away from) one that might have the "likes" but without the dislikes. Worth a shot if you get to the point where you can try another mask.

Nasal pillows will only work for you with an assisting device (chin strap, cervical collar, mouth taped) to keep your mouth shut. If you decide to try them, go straight to the Resmed P10. There are preferences for others, but I expect if we did a poll (please, no . . . ), it would win.

rick blaine
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Re: Ok, Enough's Enough.. Surgery Advice please :(

Post by rick blaine » Tue Jan 09, 2018 3:38 pm

Hi SolisQuaesitor71,

The machine they have given you, on a long term-loan basis, is the Philips Respironics System One, model number 561. It's auto-adjusting with the option of both A-Flex pressure relief in auto mode, and C-Flex pressure relief in fixed-pressure mode.

It's the same one as I have - although I bought mine. You are the only person I know or have read about on this forum who has been issued with an auto-adjusting machine from the NHS.

You have also been given, on the same long-term loan basis, a humidifier. There was a time not so long ago, when that didn't happen with the NHS. If you wanted the comfort of a humidifier, you had to buy your own.

You have also been prescribed - that is, given - four of the most widely-used and well-tolerated masks in current sleep apnea treatment. And from what you say, I gather you got to use the first three of these four for quite a lengthy period - would you say for at least 30 days? - before moving on to the next one.

And I don't know - because you don't say - what happened to those four masks when you moved on to the next one. But the sleep medicine department which I attend doesn't ask for masks back - (a) because it's too much trouble, and (b) it's too much of a risk, for them to sterilise them for another user. So you now have four masks in your possession (please do correct me if I am in error on this.)

I don't think you can complain about the treatment you've gotten from the NHS. In your case, they have gone above and beyond the national guidelines.

Now, as to these results - I don't know a surgeon in the country who would perform an elective tracheotomy on you - not with this objective response to CPAP treatment. It isn't clinically justified. Your average AHI is just over 5. And in any event - as RicaLynn pointed out above, you either aren't aware of, or have totally disregarded, the risks attendant on that surgery.

Your best choice is to put your energy into making this form of treatment work for longer sleep sessions, and I hope some of the accounts above about how long it took other people to get to a reasonable place with their treatment, and the likes of RicaLynn saying "in the grand scheme of things it's not enough time to say you've given it a full go" have had some effect on you.

Every OSA patient that I know of has had to go through some period of adjustment. For some, longer than others. Progress begins when you accept that.

Perhaps I can remind you of that (British) insurance company's tv advert from the late '80s - 'We won't make a drama out of a crisis'.

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

Post by TedVPAP » Tue Jan 09, 2018 6:54 pm

SolisQuaesitor71 wrote:Ok, attempt number 2 at posting...

As already mentioned i've tried all the masks available to me, a basic Philips Respironics full face, the Amara View, the Resmed Quattro and the current one being the Fisher & Paykel Oracle.......
You should try pillows.

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