When is it enough? Or Trach

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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althea
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When is it enough? Or Trach

Post by althea » Sun Apr 26, 2015 1:44 am

OKay so because of my complications, Bipap and Cpap, physically hurt my neck and chest injuries and the constant all night adjustments are causing even more pain. My sats are in the low 70s without oxygen or cpap and my sleep index is bad. I have severe Restrictive lung (Anatomical) and OSA from neuro plus untreatable cardiac issue from accident and subsequent attempts to repair things. Not helping is that I am overweight but have lost 20 lbs this month and it did not help at all. I'm really trying my best to get used to this but all this equipment is just making life miserable for me in terms of even less sleep and more pain. Pulm doc says next thing would be a trach which I'm extremely familiar with due to working with lots of trached patients over the years. I have zero underlying pulmonary problems, mine is all anatomical/removed structure in chest and neck. My chest and shoulder collaspe into my mid body when lay on my side or the hole gets deeper if I lay on my back. It's just awful. I'm missing some ribs, clavicle, part of my upper sternum, upper half of my pec major and other muscles.

Is it time to really start thinking about a trach? Then I wouldn't need any of this cpap or supplemental oxygen-so he says. I'm just so exhausted and cannot get used to all the equipment on my face and around me. I wear nasal pillows.

To tell you the truth, I don't want any of it nor a trach. I am so very exhausted but the chances if my passing in my sleep without either is substantial. I just want to forget about all of this.

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kaiasgram
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Re: When is it enough? Or Trach

Post by kaiasgram » Sun Apr 26, 2015 1:49 am

My heart goes out to you. I don't think any one of us is in a position to make a suggestion about your very complicated case. But until you make a decision, can we help you troubleshoot the issues you're having with your CPAP?

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althea
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Re: When is it enough? Or Trach

Post by althea » Sun Apr 26, 2015 2:01 am

Because of the accident and subsequent chest surgery, my pain in that area is so bad. (For women, it is often at the child birth level.) The air pushing in, even at the lower level I'm at now, is just enough to put "incoming" (for lack of better words) pressure on the screwed up nerves. It like raw tissue and bone inside. Then any gear is constantly having to be adjusted around my nose and head which means I have to use my bad arms and on that side which moves all the tissue and loose cut bones left. Turning from side to side, to find a comfortable spot is a nightmare. Many people have told me to take more pain meds but I do not like taking any drugs and I take very minimal as it just worsens the apnea and desaturation obviously. I don't know anymore. I feel like such an ass having such a hard time with this. I have a high tolerance for pain but this is just too much and it also makes me short of breath for the first hour or so I have the thing on. Because I'm missing muscle from and back, having to keep moving my neck around is giving me a darn headache too when I use it on top of sinus pressure that I just don't need.

"Marsha, Marsha, Marsha!" I sound like such a darn whiner but I'm really not. Just frustrated with myself and doctors.

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kaiasgram
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Re: When is it enough? Or Trach

Post by kaiasgram » Sun Apr 26, 2015 2:08 am

althea wrote:Because of the accident and subsequent chest surgery, my pain in that area is so bad. (For women, it is often at the child birth level.) The air pushing in, even at the lower level I'm at now, is just enough to put "incoming" (for lack of better words) pressure on the screwed up nerves. It like raw tissue and bone inside. Then any gear is constantly having to be adjusted around my nose and head which means I have to use my bad arms and on that side which moves all the tissue and loose cut bones left. Turning from side to side, to find a comfortable spot is a nightmare. Many people have told me to take more pain meds but I do not like taking any drugs and I take very minimal as it just worsens the apnea and desaturation obviously. I don't know anymore. I feel like such an ass having such a hard time with this. I have a high tolerance for pain but this is just too much and it also makes me short of breath for the first hour or so I have the thing on. Because I'm missing muscle from and back, having to keep moving my neck around is giving me a darn headache too when I use it on top of sinus pressure that I just don't need.

"Marsha, Marsha, Marsha!" I sound like such a darn whiner but I'm really not. Just frustrated with myself and doctors.
We've had a few complaining newbies on this forum who should read your story and what you're up against with cpap therapy. FWIW you don't sound like a whiner, just explaining the particular difficulties -- which I asked about, after all.

Getting adjusted to PAP therapy comes easy for a few lucky souls but the rest of us have had to work at this. Your challenges sound overwhelming. I honestly have no idea if just giving this time would alleviate the pain and some of the difficulties you're having. What are your current pressure settings?

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Madalot
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Re: When is it enough? Or Trach

Post by Madalot » Sun Apr 26, 2015 8:14 am

Man, I feel for you. I can relate to your issues, to a LESSER degree. I have sleep apnea, but a rare, congenital Muscular Dystrophy that makes breathing difficult when I lay down. I failed cpap & bipap, ultimately ending up on a ventilator NON invasively (I use a mask). At one point, however, we were talking about a trach.

You may have said and I missed it, but what is the issue with the cpap/bipap machines that aren't working for you?

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yaconsult
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Re: When is it enough? Or Trach

Post by yaconsult » Sun Apr 26, 2015 10:02 am

Hi, althea. Could you either fill out the equipment section of your profile or tell us what equipment you have? Most of us use software to monitor our therapy and see how we are doing at night so that we can make any adjustments that are necessary to improve things. What does the display on your machine indicate about your therapy?

You have so many additional challenges besides cpap. My first ENT doctor thought that a tracheotomy would be the best solution for me but I wanted to try cpap first and was lucky that it worked well for me.

Did they do a sleep study before putting you on cpap? If so, do you have the results?

We have some very experienced members here that might be able to make suggestions to improve the results you get with your cpap. Are there any specific cpap problem areas that you are aware of?

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herefishy
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Re: When is it enough? Or Trach

Post by herefishy » Sun Apr 26, 2015 12:38 pm

Thank goodness I don't have any experience to draw on to advise you, just giving you my sympathy.

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chunkyfrog
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Re: When is it enough? Or Trach

Post by chunkyfrog » Sun Apr 26, 2015 1:42 pm

Me, too. {{{HUG}}}

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SleepDisturbed
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Re: When is it enough? Or Trach

Post by SleepDisturbed » Sun Apr 26, 2015 1:46 pm

Ditto what the frog said.

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HoseCrusher
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Re: When is it enough? Or Trach

Post by HoseCrusher » Sun Apr 26, 2015 1:56 pm

You may want to consider a little different approach to this...

You should explore and find a position and configuration that gives you the least amount of discomfort while sleeping. During the healing process you may end up sleeping sitting up, if that is more comfortable, or inverted on a anti gravity table, or floating in a tub of water.

Once you find a position, then confirm the xPAP equipment to meet your needs while you are in that position.

My thought is that if it is possible to get restful sleep in an "unorthodox" position you can start to heal and as you heal move back to laying in a bed on your side and sleeping more conventionally.

The goal is to improve. If nothing else works then you can consider surgery. Surgery has its own sets of complications so that option may be no easier than trying to fight things out without surgery. In the end the goal is to improve.

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althea
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Re: When is it enough? Or Trach

Post by althea » Sun Apr 26, 2015 2:35 pm

Thank you everyone for your advice-so very very much appreciated. Because my case is in litigation I have to be somewhat careful with online stuff- not that I care what anyone reads about my health in hopes of helping someone myself, but you know how it is. Blah... And more importantly, being on the computer makes my pain worse.

I'm am now using a new ResMed Air Sense which seems like a good machine. I'm on 6 which feels like a hundred as it blows into my body. Nasal pillows fit okay, no leaks and I'm trying a smaller size now. I do better at night with just supplemental oxygen but doc said that would only be a temporary fix and things will just get worse if I don't address the physical breathing part. Yeah doc, I already know but have you tried sleeping with hoses and blowing air up your nose? Not fun.

The problem with positioning is that there is no "good" position. My chest and neck collapse/suck in on either side and on my back. Of course stomach sleeping it out of the question. This isn't a new surgery. Sadly my complications are just worsening as my body tries to figure out how to fill up the space vacated by what should be there/was there. I have totally lost my airway twice while walking upright, of all things and scary as hell.

In general, I cannot get comfortable and sleep on average about 15 min to an hour at a time. With all this gear, hoses and added pain, it is making matters worse, not better. On the occasion when I do sleep more than a hour with the damn thing on, I don't feel any different when I wake up. In fact, I feel worse with an added headache from neck strain trying to move the hose around as I change positions a million times a night, ear, sinus and tooth pain. Wow, now that is some serious whining. I'm so embarrassed as I'm normally a very hardy, easy going person. i just cannot get this to work and I'm utterly embarrassed.

First we started with an overnight pulse ox test which showed a drop in sat to low 70s- HR in the 40s. (The heart rate issue was caused by surgery and can't be fixed without possible pacer.) I had a sleep study after initial surgery a few years ago which was poor but the funny thing is, I never ever once sleep a wink during the first study but the results were poor as well. Really? From those results, Pulmonary doc ordered cpap first, then bipap. I did not tolerate either due to the same problems I've having now. Now flash forward to Jan 2015 as my complications worsen, been on ventilator numerous times, sob, tired and so on. A second sleep study showed poor results (I will try to find them and post) after I did manage to sleep a two hours with drug aide. So I go back to sleep lab and do well on 6 of cpap and slept for two hours BUT I took medication for pain and vomiting (from pain meds) and that caused drowsiness enough to sleep more than I normally do. This is no way to live or use a cpap machine. I am not a fan of taking any medications, especially narcotics and I have tried every over the counter, natural sleep aid out there plus some prescriptions ones. The fundemnetal problem for me is anatomical/structural and no amount of sleep aid is going to help this and the long term complications of taking drugs for pain and sleep are worrisome. I am on minimal medications and want to keep it that way.

Blah, blah, blah... Off my problems... God Bless the People of Nepal. May God send you everything you need.

I will fill out my profile more complete now. and post a picture of my chest as my avatar.

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Julie
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Re: When is it enough? Or Trach

Post by Julie » Sun Apr 26, 2015 2:42 pm

I suppose there's no question of having anything rebuilt inside?

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althea
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Re: When is it enough? Or Trach

Post by althea » Sun Apr 26, 2015 2:47 pm

Yes that has been brought up but the risk is high.

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OkyDoky
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Re: When is it enough? Or Trach

Post by OkyDoky » Sun Apr 26, 2015 2:53 pm

Do you think a soft cervical collar would help to support your neck muscles? Many here use those for chin support. Also you might try a hose management system such as this? https://www.cpap.com/productpage/HoseBu ... ystem.html
ResMed Aircurve 10 VAUTO EPAP 11 IPAP 15 / P10 pillows mask / Sleepyhead Software / Back up & travel machine Respironics 760

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althea
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Re: When is it enough? Or Trach

Post by althea » Sun Apr 26, 2015 2:59 pm

Oh OKy... Yeah I really like that hose management system. Wow thank you for this suggestion. I knew I registered here for a reason. I'm going to contact my doc and see about this. It will be a fight in court for it I'm sure but I might just buy it first myself and try it. Can't wear cervical collar or anything near my chest wall. The scar is about a foot long from back to over my sterum and the hole is fist deep plus severe RSD/CRPS it that area so anything even slightly touching this area is brutal.