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[Treatment] CPAP never worked
#1
I've been diagnosed with severe sleep apnea since 2003, after multiple surgeries, Tonselectomy, UPPP, Rhino/Septo plasty and trying every mask and machine imaginable I was never able to adapt to CPAP. It also helps to explain I also have suffered from insomnia pretty much my entire life and I'm 52 years old. Ive tried nose provents, I've tried TAP, none work. The basic issue with CPAP comes down to, if you cannot tolerate a full face mask, yet you are a mouth breather and will always be a mouth breather you are stuck with a nose mask. However when your mouth falls open the air goes right out your mouth. I tried the bandages to keep the mouth shut and practically ruined my jaw for life, my Dentist told me if I kept wearing that thing he would not be able to fix my jaw and eating solids would be a thing of the past! So where does this leave me...15 years untreated apnea, with 85 apneas / hour. I'm trying to qualify for the new implanted Inspire therapy, but my Doctor tells me the range is 25 - 65 and above or below that the insurance company may not accept me. I'm keeping my fingers crossed as I see this as my last option. I can no longer hold down a normal job, I'm exhausted all the time. My Fitbit has my average sleep per night at 90 minutes and my doctor said that's about right based on my insomnia and untreated apnea. Has anyone else been in my situation and so what have you done? Please after 15 years of trying CPAP don't recommend some new mask or feature - CPAP for me is a joke. Thank you
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#2
(03-02-2017, 08:41 PM)g12196 Wrote: Has anyone else been in my situation and so what have you done?

Sorry, g, I know of no one else in that particular situation. Lots of people have had problems with CPAP therapy. What you say about the nasal mask baffles me, though. It seems a full face mask would be what you want.

Quote:Please after 15 years of trying CPAP don't recommend some new mask or feature - CPAP for me is a joke. Thank you

Mask technology has come a long way in the last 15 years. I'm sorry that you're unwilling to try any new mask. My only suggestion for you is to try what I tried, which is behavioral therapy. It, along with CPAP therapy, has changed my life. I can't imagine what life would still be like for me if I was still putting up with what you're enduring. I hope you find a solution.
Sleepster
Apnea Board Moderator
www.ApneaBoard.com


INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#3
Hello g12196. Welcome to Apnea Board.

OK, I won't tell you anything new about CPAP, given your history, though it seems your problem is (at least partly) based on the fact you can't tolerate a full face mask. Maybe that is an avenue to explore through cognitive behavioural therapy or clinical hypnosis. Other options you may or may not have considered are mandibular advancement device (your dentist can advise on those), or Inspire therapy (which you already know about). There is also a trial of a new therapy using implanted magnets. http://www.apneaboard.com/forums/Thread-...ZY-IS-THIS Frankly I'm sceptical about the various implant type therapies, but in your case you have nothing to lose.

I hope you are able to find something which works for you, to give you your life back. Best wishes.
DeepBreathing
Apnea Board Moderator
www.ApneaBoard.com


Bed

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#4
The last resort http://www.webmd.com/sleep-disorders/sle...leep-apnea

Surgery Overview
Tracheostomy is surgery that is sometimes used to treat obstructive sleep apnea (OSA). In this surgery, the surgeon creates a permanent opening in the neck to the windpipe (trachea). He or she then puts a tube into the opening to let air in.
  • A valve keeps the opening of the tube closed during the day, which allows you to speak and breathe normally.
  • At night, you open the valve so that air can go around the blockage in your throat and into your lungs while you sleep.
What To Expect After Surgery
The time needed for the opening in the neck to heal can vary.

Why It Is Done
A tracheostomy is done only if you have severe sleep apnea, other treatments have failed, and other forms of surgery won't work for you.

How Well It Works
Tracheostomy almost always cures sleep apnea that is caused by blockage of the upper airway.1
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#5
Hi g12196,
WELCOME! to the forum.!
I’m sorry to hear that you have had such a bad time with CPAP therapy, and I hope you find something that will work for you.
Hang in there for more responses to your post.
trish6hundred
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#6
Have you tried or looked into Maxillomandibular Advancement Surgery for sleep apnea?   If you haven't, you might want to google it.

It is very grueling but has one of the higher success rates according to a sleep doctor I corresponded with online.

Good luck as I hope you find something that works for you.

49er
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#7
   

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#8
I've got UPPP coming next week and if that's not working my country only offers Tracheostomy. Any good research out there on this surgery? Looks effective but my physicians says its a big risk due to difficulty keeping it clean.
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#9
My wife had a Trach for over a year. The reason was OSA, BUT thecause was different. Many, many years ago she had an injection of teflon (then do NOT do this now) in here vocal cord. Over the course of years the body rejected the teflon swelling her throat to a narrow opening, thus severe OSA symptoms. Her life was a fog, she was given anti-depressents, treated for Asmatha (she was wheezing) all of which were wrong. Sound familiar anyone? With the Trach, as SOON as it was in, she commented on everything around her was "brighter" and how easy it was for her to think.
Yes the Trach DOES work.

The down side, you have to clean it regularly, you have to remove it and replace it frequently, you cannot swim, you have no filter for air coming into your lungs as you would normally have.

Hers was ultimately fixed by removing the growth, granuloma, in her throat. They were EXTREMELY cautious on the permanent removal of the Trach which will heal on its own on removal of the tube.

Withoiout question, not the first option.
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#10
I belong to an HMO that uses Apria as the DME. I've been working on the same Rx for supplies for 7 years. There was a two year period, where I belonged to the HMO, but my group policy had changed and did not cover PAP supplies. I had to surf the web for the best prices. I requested a copy of my Rx from my HMO. I got it and was able to purchase supplies legit elsewhere. I am currently on Medicare Advantage with the HMO and my PAP supplies are now covered...and still working with Apria on the original Rx.
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