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Had a scare last night
I am using the opus nose pillows and having air leakage out of my mouth. The leakage has been enough to wake me many times throughout the night. I read a post about taping your mouth shut and decided to try the tape. I woke up in the night and my nose was clogged and full of water (rainout) and went into a panic thinking was going to smother before I could get the tape off. What actually woke me up was water running all over my face.
I have made a decision that if I cannot get used to this before long i will let the doctor do the trach. He said that this my only other option. I am past my 1st 30 day mask trade out, so cannot try the hybrid mask he suggested. DME is a real sweatheart and so is my dear insurance company.
I know for sure no more tape for me.
Views: 78
Replies to This Discussion
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Permalink Reply by Marlene Raitt on
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I to was having the rain out thing and finally spent the money and got a heated hose from cpapusa and it has worked--i had knit a sleeve for hose and was sleeping with it under covers and still wet nose and cold nose--after the heated hose i am dry and have a warm nose--hope it helps
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Permalink Reply by sleepycarol on
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Try purchasing the Hybrid on line. Prices are so much cheaper. If nothing else, check out cpapauction. Masks go for pennies on the dollar at times. That is how I got many of the different masks I tried.
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Permalink Reply by Walt Service on
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Yeah Carl...too bad about the surgery outcome. Personally can't understand why MDs still push the surgical route for pts when the success rate for "treating" sleep apnea is so low.
The "gold standard" for cpap retitrations is one every year. We ask our patients to contact us if they are: snoring again, feeling tired again, having a dry mouth.
As far as looking into other masks, have you checked out sites on the internet? One that we recommend to our patients is www.cpapman.com perhaps they might have something you might like to try.
Needless to say...don't give up!!
Carl Speas said:I believe part of the problem is i have had surgery to correct my sleep apnea that did not work. there is nothing to keep the air out of my mouth. my throat is an open cave. I do not know if more pressure would work or not. the doctor seems to think less would be better. he is not ready to make any adjustments.
I have tried the opus and the oracle masks at present. I am now using the opus, the oracle blew air out my nose. The doctor suggested the hybrid mask and i am trying to get that, but dme is a pain.
3 years ago before surgery i had a full face mask that almost ate my nose off. It was an open sore from top to bottom and my eyes swelled shut. we thought i was going to loose my nose. it took several weeks to heal.
I have had no retritations. When are you suppose to have them?
Walt Service said:Holy Smokes Carl!! Over the years, I have had only one patient actually try this....I'm very glad you've decided not to venture down this path.... If you don't mind me asking; what other masks have you tried and how many retitrations have your had? Many times, I found while titrating a patient, that if they are having issues with mouth breathing...they need MORE pressure. I can't tell you the number of times I thought I would have to use a chin strap on a patient but instead I increased their pressure by 1cm and bingo...the mouth closes and stays shut. Keep us informed.
Walt
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Permalink Reply by Andy on
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Hi Carl,
Small family-owned company? Great! Track down the name of the owner, preferably the one who started it all, (the original owner's children don't usually care as much!) and make an appointment to see him/her. Take your mask with you, and sit down and discuss things.
The reality is, the return policy from the DME to the manufacturer is pretty liberal, so the DME should be able to do something.
Also, you need to call the insurance company. Best approach? Call customer service. If no satisfaction, talk with a supervisor. If no satisfaction, call the President/CEO's office.
The system is designed to wear you down to the point where you walk away disgusted. It's designed to get you to stop calling them and demanding that they give you what you've paid for. Don't let them wear you down!
The sad part is that none of us should have to go through all this to get the care we pay for and deserve.
The reality is that we must be assertive and persistent to get what we need.
Once CPAP is working for you, you'll see that the effort is worth it!
.
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Permalink Reply by Mike on
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Carl, sounds like you are getting a raw deal from your DME. make sure others avoid this particular DME. leave an anonymous review at http://www.sleepsearch.com -- this is the very reason we built it.
Carl Speas said:I am considering looking for a new DME. My concern is the insurance is so unhelpful. i need to look more in to this. The DME is suppose to call me back tommorow, I am waiting to see if it happens.
I also filled out a survey for their customer service dept. I let them have it both barrels. This a family owned company and been in the communty for many years. I thought i would get better service there rather than some big national compny, how wrong i was.
Andy said:Hi Carl,
Sorry to hear about your scare.
The odd thing is that we never seem to have the same kind of scare when we stop breathing with OSA! If we did, I'll bet people would seek treatment a lot sooner...
Here's what I'd do:
1) Try to find another DME, and see what the procedure would be to switch over to them. It shouldn't be a major problem for you to find someone who can do this.
2) Once you find another DME, call your current one, and ask for more cooperation. Your DME is out of the office again? She has a supervisor. And the supervisor also has a supervisor. Don't take lack of concern on their part as an answer! Your DME is a huge national company? Even better. Track down the name of the President/CEO on their website, and call his/her office directly. You will get help.
3) No cooperation? Don't threaten! Just politely mention that you've found another DME, and you'll be transferring over to them soon, so the current one should be watching for the paperwork. Mention that if they have any trouble collecting on the insurance after today, to let you know, and you'll try to handle it.
4) Call the company that makes your CPAP machine/mask. Ask them what they have available for you. Past the 30 days? They shouldn't make a big deal about that. Just mention that used is used, and to them it's trash no matter when it goes back. Logic is a great tool!
5) Go to your sleep center, and see what they have. Mine uses "one-time-use" masks, and I was able to get one from them for free.
6) Remind whomever you talk with that satisfaction is key to you wanting to work with them from this point on. Let them know how young you are, and how you'll be using their products for the next 30 years or so!
7) Post back here and let us know.
8) Don't give up!
9) I have more tricks if the above don't work. But I'll bet they do...
;)
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Permalink Reply by 99 on
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i have the answer to rain out
bore i 1/16 hole for water to drain at the begining of the plastic tube
recalabrate the air leak rate and that is it
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Permalink Reply by Carl Speas on
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Update!!!!
Seems the RT @ the DME got a report of my complaints from her superiors today. She called early this morning and we set up a meeting for tomorrow afternoon for me to pick up my new bipap machine and my new hybrid mask. She seems to have forgotten that she had not gave me my new machine at 4 weeks. We discussed my concerns about not returning my calls and i really think that she was not getting the messages from her coworkers. She did not recieve the message that had called in yesterday about the machine and mask. She offered to have a manager call me and further discuss my concerns, I told that was not needed we just needed to iron out the problems ourselves.
The best part of all? The mask is being given to me at no charge!
I say a great big thank you to all of you that encouraged me to fight through this and get what I needed.
Tomorrow night i will have my new machine and mask and hopefully this mask will be my perfect fit!
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Mike I have tried to sign up for this website, but I do not recieve my activation email from them and it will not let me use my email and password to get in. I even tried to set it up under my wife's email and it still will not send an activation email so I can not get in to make any reviews or add new profeessionals. I will continue to try.
Carl
Mike said:Carl, sounds like you are getting a raw deal from your DME. make sure others avoid this particular DME. leave an anonymous review at http://www.sleepsearch.com -- this is the very reason we built it.
Carl Speas said:I am considering looking for a new DME. My concern is the insurance is so unhelpful. i need to look more in to this. The DME is suppose to call me back tommorow, I am waiting to see if it happens.
I also filled out a survey for their customer service dept. I let them have it both barrels. This a family owned company and been in the communty for many years. I thought i would get better service there rather than some big national compny, how wrong i was.
Andy said:Hi Carl,
Sorry to hear about your scare.
The odd thing is that we never seem to have the same kind of scare when we stop breathing with OSA! If we did, I'll bet people would seek treatment a lot sooner...
Here's what I'd do:
1) Try to find another DME, and see what the procedure would be to switch over to them. It shouldn't be a major problem for you to find someone who can do this.
2) Once you find another DME, call your current one, and ask for more cooperation. Your DME is out of the office again? She has a supervisor. And the supervisor also has a supervisor. Don't take lack of concern on their part as an answer! Your DME is a huge national company? Even better. Track down the name of the President/CEO on their website, and call his/her office directly. You will get help.
3) No cooperation? Don't threaten! Just politely mention that you've found another DME, and you'll be transferring over to them soon, so the current one should be watching for the paperwork. Mention that if they have any trouble collecting on the insurance after today, to let you know, and you'll try to handle it.
4) Call the company that makes your CPAP machine/mask. Ask them what they have available for you. Past the 30 days? They shouldn't make a big deal about that. Just mention that used is used, and to them it's trash no matter when it goes back. Logic is a great tool!
5) Go to your sleep center, and see what they have. Mine uses "one-time-use" masks, and I was able to get one from them for free.
6) Remind whomever you talk with that satisfaction is key to you wanting to work with them from this point on. Let them know how young you are, and how you'll be using their products for the next 30 years or so!
7) Post back here and let us know.
8) Don't give up!
9) I have more tricks if the above don't work. But I'll bet they do...
;)
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we"re having some problems with aol email addresses -- will private message you to manually activate your account
Carl Speas said:Mike I have tried to sign up for this website, but I do not recieve my activation email from them and it will not let me use my email and password to get in. I even tried to set it up under my wife's email and it still will not send an activation email so I can not get in to make any reviews or add new profeessionals. I will continue to try.
Carl
Mike said:Carl, sounds like you are getting a raw deal from your DME. make sure others avoid this particular DME. leave an anonymous review at http://www.sleepsearch.com -- this is the very reason we built it.
Carl Speas said:I am considering looking for a new DME. My concern is the insurance is so unhelpful. i need to look more in to this. The DME is suppose to call me back tommorow, I am waiting to see if it happens.
I also filled out a survey for their customer service dept. I let them have it both barrels. This a family owned company and been in the communty for many years. I thought i would get better service there rather than some big national compny, how wrong i was.
Andy said:Hi Carl,
Sorry to hear about your scare.
The odd thing is that we never seem to have the same kind of scare when we stop breathing with OSA! If we did, I'll bet people would seek treatment a lot sooner...
Here's what I'd do:
1) Try to find another DME, and see what the procedure would be to switch over to them. It shouldn't be a major problem for you to find someone who can do this.
2) Once you find another DME, call your current one, and ask for more cooperation. Your DME is out of the office again? She has a supervisor. And the supervisor also has a supervisor. Don't take lack of concern on their part as an answer! Your DME is a huge national company? Even better. Track down the name of the President/CEO on their website, and call his/her office directly. You will get help.
3) No cooperation? Don't threaten! Just politely mention that you've found another DME, and you'll be transferring over to them soon, so the current one should be watching for the paperwork. Mention that if they have any trouble collecting on the insurance after today, to let you know, and you'll try to handle it.
4) Call the company that makes your CPAP machine/mask. Ask them what they have available for you. Past the 30 days? They shouldn't make a big deal about that. Just mention that used is used, and to them it's trash no matter when it goes back. Logic is a great tool!
5) Go to your sleep center, and see what they have. Mine uses "one-time-use" masks, and I was able to get one from them for free.
6) Remind whomever you talk with that satisfaction is key to you wanting to work with them from this point on. Let them know how young you are, and how you'll be using their products for the next 30 years or so!
7) Post back here and let us know.
8) Don't give up!
9) I have more tricks if the above don't work. But I'll bet they do...
;)
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carl -- i see your account as active. let me know what happens when you try to sign in again.
Mike said:we"re having some problems with aol email addresses -- will private message you to manually activate your account
Carl Speas said:Mike I have tried to sign up for this website, but I do not recieve my activation email from them and it will not let me use my email and password to get in. I even tried to set it up under my wife's email and it still will not send an activation email so I can not get in to make any reviews or add new profeessionals. I will continue to try.
Carl
Mike said:Carl, sounds like you are getting a raw deal from your DME. make sure others avoid this particular DME. leave an anonymous review at http://www.sleepsearch.com -- this is the very reason we built it.
Carl Speas said:I am considering looking for a new DME. My concern is the insurance is so unhelpful. i need to look more in to this. The DME is suppose to call me back tommorow, I am waiting to see if it happens.
I also filled out a survey for their customer service dept. I let them have it both barrels. This a family owned company and been in the communty for many years. I thought i would get better service there rather than some big national compny, how wrong i was.
Andy said:Hi Carl,
Sorry to hear about your scare.
The odd thing is that we never seem to have the same kind of scare when we stop breathing with OSA! If we did, I'll bet people would seek treatment a lot sooner...
Here's what I'd do:
1) Try to find another DME, and see what the procedure would be to switch over to them. It shouldn't be a major problem for you to find someone who can do this.
2) Once you find another DME, call your current one, and ask for more cooperation. Your DME is out of the office again? She has a supervisor. And the supervisor also has a supervisor. Don't take lack of concern on their part as an answer! Your DME is a huge national company? Even better. Track down the name of the President/CEO on their website, and call his/her office directly. You will get help.
3) No cooperation? Don't threaten! Just politely mention that you've found another DME, and you'll be transferring over to them soon, so the current one should be watching for the paperwork. Mention that if they have any trouble collecting on the insurance after today, to let you know, and you'll try to handle it.
4) Call the company that makes your CPAP machine/mask. Ask them what they have available for you. Past the 30 days? They shouldn't make a big deal about that. Just mention that used is used, and to them it's trash no matter when it goes back. Logic is a great tool!
5) Go to your sleep center, and see what they have. Mine uses "one-time-use" masks, and I was able to get one from them for free.
6) Remind whomever you talk with that satisfaction is key to you wanting to work with them from this point on. Let them know how young you are, and how you'll be using their products for the next 30 years or so!
7) Post back here and let us know.
8) Don't give up!
9) I have more tricks if the above don't work. But I'll bet they do...
;)
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