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

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

Post by SolisQuaesitor71 » Sat Jan 06, 2018 5:29 pm

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

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

Post by Julie » Sat Jan 06, 2018 5:41 pm

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Last edited by Julie on Sat Jan 06, 2018 6:11 pm, edited 1 time in total.

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

Post by WearyOne » Sat Jan 06, 2018 5:52 pm

.
I hope you have researched this EXTREMELY well, and if not, I urge you to do so. If possible, talk to someone who has trach to find out their experience living with one. Talk with several sleep docs and those that perform this type of surgery.

Don't brush aside the possible risks and side effects of a trach because you're so frustrated with your current situation. I doubt seriously that after surgery recovery that everything with a trach will be all wonderful with no problems. I know when I'm so upset and frustrated with something every other option seems so much better than my current situation. It rarely is.

To even think about this when you haven't even been on a mask six months is very extreme, IMHO. From what I've read, it's the very last resort when every other possible avenue has been tried, including other types of surgery.

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

Post by carbonman » Sat Jan 06, 2018 6:04 pm

SolisQuaesitor71 wrote: 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 regards
Really?????

https://www.bing.com/images/search?q=tr ... &FORM=IGRE

I'm sure that life will be much easier living w/that.

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

Post by msla » Sat Jan 06, 2018 6:11 pm

Then there is this complication to consider https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2173194/

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

Post by Okie bipap » Sat Jan 06, 2018 6:29 pm

Let your nose heal, then use something to pad your nose when you use the full face mask. When my mask was making a sore on my nose, I used a band aid on the sore at night when sleeping until it healed. Once it healed, I started using a piece of moleskin on my nose at night. Moleskin is usually found in the foot care section of drug stores (here in the US). Once I decided this would work for me, I ordered some on line that came in a roll that was two inches wide. I would cut off a piece every night and then stick it on my nose before putting on my mask.

I opted for UPPP surgery, turbinate reduction, and a septoplasty over 20 years ago. I had all three done at the same time, and was very wore for several days. Before considering any surgery research the effects (both good and bad) as well as how it will impact your life. From the looks of it, a trachaeostomy is going to interfere with how you eat and drink. I would do this only as a last resort and if I had no other options to maintain my life.

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

Post by Goofproof » Sat Jan 06, 2018 6:44 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
Do you think a trachaeostomy will be a good look for you.. Not many can pull it off, unless it's a lifesaver. Best idea put CAN'T Away, make friends with XPAP, use the knife to cut a nice steak. Jim

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

Post by TedVPAP » Sat Jan 06, 2018 7:23 pm

Just because your PAP treatment has failed in the past does not mean that you can't be successfully treated with PAP.
Where is your PAP thread which discusses your failed attempts? Let's discuss solutions.

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

Post by edfreeman » Sat Jan 06, 2018 9:27 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
Sorry for your troubles. My advice: Don't ever have surgery until all other options have been completely exhausted for any condition unless immediately life threatening. Sleep apnea doesn't come close as a medical condition to warrant cutting a hole in your throat and you have barely scratched the surface in 3 months and 3 masks in giving CPAP a go. With all due respect, you have not done your best.

You mentioned the latest mask, the Oracle, was great the first night, then you added a nose clip on the 2nd night which caused a lot of problems. I've seen those clips around pools, and they're not meant to wear for a whole night, rather just for a swim, and sounds like yours was way too tight/small for you. If you think this mask is good for you, there are other methods to block air leakage through your nose and there are other types of nose clips that may be comfortable for you, presuming that is a real problem for you (you didn't mention why you added the nose clips).

There are other masks, as well. When I couldn't seem to solve mouth breathing (I have, now), I tried one called the Amara View which is considered full face, but cradles and seals under and around the nose rather than ride the bridge. It was pretty comfortable once I added a mask liner to deal with the face to mask seal moisture during the night, but still wasn't as good as the nasal pillows I prefer.

You can try a nasal mask or nasal pillows, and use some of the recommended strategies to keep your mouth shut (cervical collar, tape, chin strap). I have 2 different types of nasal pillows that I literally forget I'm wearing, they are so comfortable, and a cervical collar to keep my chin up.

You've come to a forum with members that can help you improve your CPAP therapy and experience if you'll let them. I expect there's not a single one that will endorse cutting a hole in your throat. If you'll present the results from your sleep study and/or some data from your therapy, maybe more information on what you've liked/disliked about the masks you've tried, they'll help you.

One other thing, my dear mother was diagnosed with sleep apnea probably 15 years ago, and I know she has it because I've watched her sleep, guessing her AHI is somewhere between 15-20 right now untreated. When she did the 2nd study with the mask, she ripped it off her face and flung it across the room without waking up (lol), and the technician concluded that may not be the best approach for her. So they used a wedge to change her body position some and put her on O2 while sleeping (less invasive, I guess), checked her O2 saturation (it was OK), and said she'd be fine. She's 86 now, still needs to rest better (working on getting her past that suffocated feeling breathing through CPAP). Point is you're not gonna die overnight from Apnea, and you have time and options that are far less invasive and inconvenient than the surgery you're considering.

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

Post by TedVPAP » Sat Jan 06, 2018 10:23 pm

TedVPAP wrote:Just because your PAP treatment has failed in the past does not mean that you can't be successfully treated with PAP.
Where is your PAP thread which discusses your failed attempts? Let's discuss solutions.
I found your thread original thread. viewtopic.php?f=1&t=157223&p=1206011#p1206011
Increasing your minimum was showing positive results and I told you were still too low. You did not reply.
It looks like you abandoned your thread and started new ones. I am not familiar with your newer threads.
It seems like your problem is with the mask. Did you try pillows? Please point to the thread.

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

Post by USMCVet » Sun Jan 07, 2018 1:45 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.

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 seem pretty set on surgery already which honestly won't help you work on finding a better mask. My suggestion is to try this https://www.cpap.com/productpage/pr-dre ... -pack.html (you can find cheaper online) this is small investment in saving money and pain from surgery. If that doesn't work try two more masks that others or your RT suggest based on your complaints before considering surgery. I had my tonsils out when I was around 20. It was not fun at all ! Also look at success rates online for surgery and you will see they aren't great. You will find it repeated that CPAP is the gold standard of treatment. It's all about finding what works for you.
Good luck!

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

Post by SolisQuaesitor71 » Sun Jan 07, 2018 5:27 am

First of all please let me thank you all for your advice and input. There are a lot of questions that some have posted to i will go answer them now.

@WearyOne To be honest i haven't researched this at all. It already scares the hell out of me and i sure don't want to know all the ins and outs of the proceedure. However i have spoken to someone at great length yesterday who has had a Larengoscopy (sorry for spelling) which he had done due to cancer. His experience was slight discomfort however is a far more invasive (and risky) procedure to what i'm contemplating. Asking me why i was considering it and learning about OSA he surprisingly exclaimed how he couldn't live like that and suggested the Trache..

@Okie bipap - I did have a band aid on my nose but the pressure of the mask at the top of my nose was simply making the sore raw again so didn't work. The moleskin sounds interesting though and i'll look into that option. So you had a lot of surgery! I'm hoping that it worked and wasn't a waste of time. Wouldn't you agree though that what you had done was more invasive than simply putting a hole in your throat to breath?

@goofproof - Good look? If you'd seen the state of my nose at the moment you'd agree that something in my throat would be nothing in comparable appearance. At work yesterday every customer was staring at my crusted nose Today i've told the family i'm not going out either

@edfreeman - thanks for your comprehensive contribution. In response to some of your comments/questions i must begin by making it clear that i certainly don't want to have surgery (who does?). The health workers have said that i'm giving it a better shot than most people as they've noted with the therapy hours on the machine so i disagree that i'm not doing my best - i'm trying very hard indeed to make it work. I'm now on my 4th mask which is a Fisher & Paykel Oracle which goes in the mouth like a gum shield.. the swimming pool nose clips idea was from a review of the mask on a youtube channel and i certainly regret it as they were only on for about 4 hours and have made a real mess of my nose which is now swollen, bruised and raw on both sides. Why? because the included nose plugs included with the oracle meant that air was leaking around them and the mouthpiece of the mask itself kept detaching itself and leaking so no sleep. I'd be interested to know what nasal pillows you have success with however i have large nasal holes so they'd have to be big. I've tried the Amara View which leaked where the nose sits meaning that i tightened the straps so my nose went into the mask - this resulted in nasal collapse and more plasters until it healed.

@TedVPAP - Hi Ted, thanks for your input. Yes i did do as you said and raised the pressure of the machine which seemed to lower my AHI. Recently when i have a good sleep its at just over 3 which i think is good. The reason that i didn't reply to the other thread was that i seemed to be having a degree of success and was reluctant to tamper with the machine - indeed when i had to take it to the hospital the other day they noticed that the start setting was higher than they'd set it to as they log everything on my medical records on the computer. I got a suspicious look and i played dumb so i think i'm a bit stuck there. I also returned back to work and have been trying to concentrate on getting back into normality after 5 months off due to being unable to sleep and function. I'm sure that i only had one other post/thread prior to this one... i started this simply as i considered it a completely different topic being related to surgery.

@USMCVet - Thank you for the link however i'm purely a mouth breather and wouldn't tolerate a nasal mask sadly. I'm not entirely set on surgery but it seems like a more definitive solution to the problem. CPAP therapy for me seems to be too hit and miss. I never know whether i'll sleep at night and if so how much i'll get. I'm not prepared to throw hundreds of pounds away trying different masks which may have similar or other problems to the 4 that i've already tried. The UK doesn't seem to have as much available as you do in the US. i'm guessing this is because most of the equipment is made there maybe. I've exhausted the mask options available to me on the NHS.


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

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

Post by dpackerz » Sun Jan 07, 2018 6:24 am

I was almost ready to give up on finding a good mask . I too am a mouth breather. The Amara View mask covers the nostrils and mouth and leaves the nose bridge clear. Only had a week but I think this is the answer for me.
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Re: Ok, Enough's Enough.. Surgery Advice please :(

Post by edfreeman » Sun Jan 07, 2018 11:00 am

SolisQuaesitor71 wrote:First of all please let me thank you all for your advice and input. There are a lot of questions that some have posted to i will go answer them now.
<snip>
@edfreeman - thanks for your comprehensive contribution. In response to some of your comments/questions i must begin by making it clear that i certainly don't want to have surgery (who does?). The health workers have said that i'm giving it a better shot than most people as they've noted with the therapy hours on the machine so i disagree that i'm not doing my best - i'm trying very hard indeed to make it work. I'm now on my 4th mask which is a Fisher & Paykel Oracle which goes in the mouth like a gum shield.. the swimming pool nose clips idea was from a review of the mask on a youtube channel and i certainly regret it as they were only on for about 4 hours and have made a real mess of my nose which is now swollen, bruised and raw on both sides. Why? because the included nose plugs included with the oracle meant that air was leaking around them and the mouthpiece of the mask itself kept detaching itself and leaking so no sleep. I'd be interested to know what nasal pillows you have success with however i have large nasal holes so they'd have to be big. I've tried the Amara View which leaked where the nose sits meaning that i tightened the straps so my nose went into the mask - this resulted in nasal collapse and more plasters until it healed.
<snip>
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
OK, fair enough. I couldn't imagine that anyone would want to have that surgery that can otherwise breath freely while awake, it's pretty extreme and it indicated a lot of frustration. But there are a lot of masks of all styles, you have time to get one that works. The Amara View was the most finicky of the masks I've tried, and that was exacerbated by the facial moisture that would cause the mask to move around and "fart" on my face. When it leaks, it is human/hosehead nature to start cinching up on the straps to get it to stop, but it is supposed to inflate up under and around the nose to seal, and tightening it (at least too much) works against that. I got a mask liner for it that immediately solved the face moisture issue, then went back to ground zero on the straps, put it on with the machine in mask fit mode and only tightened the straps enough to hold it in place, allowing the inflation to seal. It was so loose that I figured "this'll never work overnight," and I was right (lol). But from there I made a couple small tweaks to the straps, and the seal was consistent and the mask comfortable (and not smashed up against the nose or face). If my nose is ever congested, that is the mask I'll use.
As far as nasal pillows, the favorite is the Resmed P10, it is like wearing nothing. Their large pillows will likely serve you well if you can keep your mouth shut. I also have the Brevida as a pretty close 2nd, better headgear on that one (the P10 has what is essentially elastic and requires a good hot water washing every 1-2 weeks to keep it from stretching out too much). The Brevida also seals up under and around the nose and nostrils, so it isn't as invisible as the P10, but is still very comfortable and more stable if you toss around a lot side to side. I also have the Dreamwear Gel Pillows, solid 3rd place for me, comfortable, really like the hose on top of the head as I don't have to arrange it at all the roll over, comfortable on the nose. My biggest quarrel with it is it smashes down a wave in the hair right across the top of my head that doesn't shower out. That and the vent hole in the front isn't nearly as quiet as the diffused vents of both the P10 and the Brevida.
Keeping your mouth shut is the key, and it is likely you'll be able to wear either a chin strap, cervical collar, and/or maybe even the medical tape over your lips. I use the collar successfully, but there are folks on here to advise you on the other two as well.
I'll revise my statement about "doing your best," that came out differently than I'd intended, but the way I read your original post was "I've done all I can with CPAP, surgery is next," and honestly it does read that way as a whole. You've not done all you can, you're just getting started, though you've had the misfortune as beginning with masks that don't work and possibly bad advice and a bad set of options from your equipment supplier, but I'll agree you're doing your best as long as you continue to work through it. You really do have time to find your mask, and you'll probably get better advice on here if you'll continue to ask and answer questions. Good luck!

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

Post by MrsRinPDX » Sun Jan 07, 2018 12:05 pm

When I read your initial post, I thought, "Oh no, that is a terrible choice to make." I personally had a tonsillectomy in my late teens where I nearly bled to death.

When my Sleep Specialist (MD) told me about surgery options for OSA, (he was informing me, not endorsing them), I thought "No way am I going under the knife again." I consider any option over surgery to be a better one.

I read your reply post and it seems you are willing to give the mask another try. Excellent choice! Keep up the good work!

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