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Ginny Edmundson replied to Ginny Edmundson's discussion Scheduled for evaluation and possible procedure next day
"As of now I no longer have to use a chin strap.  I am anxious about the sleep study.  Wondering if I will be able to sleep WITHOUT the CPAP….even thought I hate it it is a part of every night now and is what I am used to.  "
Sunday
Clueless in Redwood Shores replied to Ginny Edmundson's discussion Scheduled for evaluation and possible procedure next day
"I had it on the same outpatient basis.  Much pain, no long term gain.  I did not have the annual repetition - that might or might not have made the difference. "
Sunday
Mary Z replied to richard graham's discussion mouth breathing
"glad to hear it, Richard.  Keep us posted."
Apr 13
Mary Z left a comment for richard graham
"Glad to hear it's working, Richard."
Apr 11
richard graham replied to richard graham's discussion mouth breathing
"The chin strap is helping. Been having better sleep. Thanks Ginny and Mary for your help"
Apr 11
Ginny Edmundson replied to Ginny Edmundson's discussion Scheduled for evaluation and possible procedure next day
"Thanks, Mary~  Fingers are crossed.  My pressure is one point lower than when I began (7) and AHI is some lower (7 day average).  I am anxious about sleep study as I have not slept without CPAP in 2.5 years!   "
Apr 6
Mary Z replied to Ginny Edmundson's discussion Scheduled for evaluation and possible procedure next day
"Good job, Ginny Hope the sleep study shows some good results."
Apr 6
Ginny Edmundson replied to Ginny Edmundson's discussion Scheduled for evaluation and possible procedure next day
"Last procedure done!  This time he gave me meds to take before so less anxiety while waiting!  For the first time I was able to eat normal food on the way home after the procedure.  No pain after 12 hours.  If it only works.…"
Apr 5
Mary Z replied to richard graham's discussion mouth breathing
"Some folks run their humidifiers in passover mode- not turning on the heat just letting the air blow over the water.  That would not give any heat though. "
Apr 5
richard graham replied to richard graham's discussion mouth breathing
"Interesting, I actually feel a little better when I don't use the humidifier, but the humidifier helps with sinuses. The cold air stuff's me up. Gonna try running heat and a nasal spray"
Apr 4
Mary Z replied to richard graham's discussion mouth breathing
"Good luck with it- let us know how you do, Richard."
Apr 4
richard graham replied to richard graham's discussion mouth breathing
"I just picked up a new chin strap and will use it with my ultra mirage."
Apr 4
richard graham posted a discussion

nasal sprays

Just wanting some suggestions for some good nasal sprays to dry up sinusus. Thank you
Apr 3
richard graham replied to richard graham's discussion mouth breathing
"Thanks Mary"
Apr 3
Mary Z replied to richard graham's discussion mouth breathing
"I have both.  I use the chin strap with my Wisp and I also have a FFM if I choose to use that one. I'm a mouth breather.  I find nasal masks are easier to fit without leaks"
Apr 3
Mary Z replied to Mary Z's discussion Using comfort features
"Nasacort is now available without a prescription.  I personally use Afrin on the rare nights I need it for being stuffed up."
Apr 3
richard graham replied to Mary Z's discussion Using comfort features
"Mary, do you recommend a good nasal spray?"
Apr 2
richard graham replied to richard graham's discussion mouth breathing
"Wondering if mouth breathers do better with FFM"
Apr 2
richard graham posted a discussion

mouth breathing

I'm a mouth breather, and am wondering weather to get a chin strap or affm
Apr 2
richard graham replied to Mary Z's discussion Using comfort features
"I've been thinking about trying a nasal spray. Thanks that's useful info."
Apr 2


Treatment of Last Resort



Folks  I was first diagnosed with Sleep Apnea in 2003.


Over the last 7 years I have had 7 sleep studies, seen 6 different sleep doctors, I used 6 different machines, including CPAP, BiPAP, BiFLEX and
AutoSV’s.



I also had the UPPP surgery early on in 2004, it  made things worse.


--Long sob story deleted --




In Oct 2009 I went in for Nasal Surgery, turbinate reduction and to fix a deviated septum. The ENT who did that surgery decided to keep me overnight in the Hospital even though this is
normally an outpatient procedure. He saved my life by doing this, the nurses
found that my heart rate was going down below 20. They held me over another
night to be sure the anesthesia was not doing it, same thing happened. Off to
the OR again for a pacemaker. The cardio guy said that the heart rate was a
direct result of uncontrolled sleep apnea.




The Nasal surgery was a Godsend, for the first time I could comfortably use the BiFLEX machine. This was one of Respirtonics “System One”
machines. I really thought I finally found an acceptable way to manage my Apnea,
but no,

like so many times before, we try something new, It works for awhile, but my AHI starts creeping up again right, now it is over 30.


Before the nasal surgery, I had the problem with mask leaks and comfort (compliance). But the pattern was still there, one
Sleep Study shows OSH only, the next study, shows mixed OSA, CSA, then back to OSH.



The last sleep study in May showed OSH, and “periodic breathing”. So he took away the System1 BiFLEX and gave me the new System1 AutoSV. Now he wants another sleep study.

He claims that this is necessary because Respironics will not say how the AHI is calculated (for another thread).


 My insurance company, United Health Care, has been so good to me and has covered a lot of
these expenses, but they will not approve another sleep study or a different
machine. But its not really a money thing, I can't keep doing the same things over and over and expect any different results.


So, the real reason for the thread – What is the treatment of last resort ?I asked if a tracheostomy would be the answer, he said no.


Thanks all .. I really could use some ideas ..


-Fred Stellabotte

Tags: CSA, OSA, System One, tracheostomy

Views: 11

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Replies to This Discussion

yes, tracheostomy is generally considered the treatment of last resort. it is 100% effective for OSA. in fact, it's often considered the only obstructive sleep apnea cure. some people also speak highly of MMA surgery, which restructures the facial anatomy/ jaw. but given a choice between the two, i'd personally go with the tracheostomy because it's more of a guarantee/ cure, less complicated surgery so less can go wrong, and is totally reversible in case something comes down the pike that gives us all a better treatment option than what exists now. keep in mind that neither MMA surgery nor tracheostomy will treat central sleep apnea.
What type of apnea do you have? OSA, CSA, or complex? A trach will cure OSA, but not CSA.
Rock Hinkle said:
What type of apnea do you have? OSA, CSA, or complex? A trach will cure OSA, but not CSA.
I have had 3 sleep studies in the 18 months .. the first 2 said I only had OSA .. The last study said that I had OSA and complex. This is not unusual for me .. of 10 year and almost as many sleep studies .. I diagnose flips back and forth.

I am thinking .. if I could get the OSA cured .. I would be a whole lot better .. But I can't get a doctor to consider it.
you should leave a comment for Mack Jones. He's a doctor who has had the tracheostemy himself and is a big advocate for it when all else fails. he's also in Florida, which is where i see you are. Although he himself wouldn't be the doctor to do it for you, i'm sure he'd be able to recommend someone near you who would.

Fred J. Stellabotte said:
I have had 3 sleep studies in the 18 months .. the first 2 said I only had OSA .. The last study said that I had OSA and complex. This is not unusual for me .. of 10 year and almost as many sleep studies .. I diagnose flips back and forth.

I am thinking .. if I could get the OSA cured .. I would be a whole lot better .. But I can't get a doctor to consider it.
I responded to your other thread and now see where you have some mixed and conflicting reports from previous sleep studies.

If Dr. Jones sees your post maybe he will give you some input that may help in your situtation.

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