Here is why I think this...

I was first diagnosed with sleep apnea when I was 26.  Not overwieght, physically active...but my wife said I snored alot.  So I went to the doctor.  They sent me home with a machine to record my sleep.  The next day, the doctor (who spent a total of 3 minutes with me) said I have severe sleep apnea and needed to be on a CPAP with oxygen for the rest of my life.  The only time he looked up to even acknowledge me was when I questioned his decision.  His response (I'm the doctor, not you) was not very comforting.

I was then transfered to a "worker" in the department who was to fit my CPAP.  She looked at the chart and said "oxygen...you don't need oxygen" and so didn't put me on it.  She simply fitted my CPAP.

Here I am, 8 years later and am simply wondering if the whole Sleep Apnea/CPAP thing is a scam.  This is why I feel this way.  I have a background in physical fitness (former certified personal trainer) and have a detailed understanding of how human physiology and anatomy work.  I am not very knowledgable in sleep apnea so I may be drawing too basic of a conclusion...but in relationship to muscle tissue, simply put...if you don't use it, you loose it.  In other words, your muscle tissue will atrophy if you don't use it.  To me, it makes sense that a CPAP in some cases would be doing more HARM than good to the user.  If the soft tissues in the mouth/throat are not forced to work at all (the CPAP forces air in and the pressure holds the tissues open) then they will have no reason to tighten and would, logically, become looser.

I have this conclusion from personal experience.  I have faithfully worn my CPAP 99% of the nights for 8 years.  I now feel that I am dependant on it.  Before my "diagnosis", I would have a bad sleep experience maybe once every couple of months.  Now, if I don't sleep with the CPAP, I can barely make it through the night without complete discomfort, etc.

My mask broke last night and when I called the doctor today to get a replacement part, they no longer simply send out parts but that I would need to come in and get fitted for one of the new and improved masks.  I am a business owner and pay out of pocket for my medical so to me all I see is that the doctors office has found a way to make some more money off of me.

I have tried looking at what other options are out there for sleep apnea.  I'm not saying that I don't have it, I'm just saying that I find it hard to believe that the only solution for someone with sleep apnea is to hooked to an uncomfortable, demeaning, confidence busting, cash hog that might be hurting more than it is helping.

When I've googled surgery options, I see both "WHAT AN AMAZING THING...CURED MY SLEEP APNEA" AND "THE SURGERY ALMOST KILLED ME".

I just need some stright forward advice that is not given my Kaiser Permanente...as I feel that their only concern is to keep me paying them money every 6 months.

Any help is appreciated...I'm 34 and am tired of feeling like a defect.

Thanks,

MW

You can get new masks from mail order CPAP suppliers.

I have had two different surgeries; MMA with hyoid suspension and a UPPP with tonsillectomy -- and I still have severe sleep apnea.   If you have mild to lower end moderate apnea, you may be able to use an oral device.  If you have higher moderate or severe apnea, figure on about 50 more years of CPAP.



Last edited by Bearded One on Tue Apr 22, 2008 4:53 pm; edited 1 time in total

I know I have options for ordering masks...I am more interested in options to get me off of the CPAP machine.  

Like I mentioned in my post, the doctors had no desire to discuss anything with me other than "wear this machine".  I have to belive there are other options.

Any suggestions?

You use those muscles all day while your awake, so I don't think they are going to atrophy just because you are on CPAP.

Raymart...I understand that, but am curious of why my dependence on the CPAP has become so great.  All things being equal, I should be able to be off the CPAP at the same level as I was before I started...If the tissues have not atrophied.  However, it is much worse now.  The only real change in the last 8 years is that of my age...going from 26 to 34.  If anything, I have a less stressfull life and am able to sleep more now than then.

I'm sure you can see why I am perplexed and not too convinced of the benefits of CPAP...that is why I am hoping to explore other options.

I heard of one last year (sorry...I don't remember where or what it was) that was a very minimally invasive procedure that basically tightened up the tissues in the throat with a laser.  From what I remember, it was very successful and had virtually no downtime...anyone know what this is?  (other than a miracle    )

Best of luck...I have searched for an answer to your age old question...so have thousands of others who have posted on here.  You have valid points...I feel my apnea has become worse over the years too....meaning I rely on the machine.  You know, it is not always the scientists who come up with the cure...

Your PROBLEM is being stuck w/a less than desirable sleep doctor. And obviously a less than desirable DME provider as well. What about your family doctor? Is he/she a Kaiser "company doctor" as well or does he/she sometimes actually think for himself/herself and have genuine interest and concern for his/her patient?

First off, what mask have you been using all this while? Do you even know the name and size of your mask? Second, are you still using your original CPAP machine? At 8 years of age it still has a lot of life left in it, BUT .... the newer machines have a lot more options and features that can make CPAP therapy a lot more comfortable and successful than the older "leaf blowers" of 8 years ago.

IF your family doctor has any moxie and concern for his/her patients it would be worthwhile to ask for an overnight oximetry. There is no excuse NOT to, the actual cost is VERY minimal. Wear the oximeter one night (the finger clip sensor) along w/using your CPAP and INSIST on a copy of the downloaded data for your own records and information. That will tell you whether you need 02 supplementation along w/your CPAP or not.

After 8 years and a reduction of CPAP therapy results it is time for another titration study. AND that SHOULD get you a new CPAP device AND you should fight tooth and nail to be sure that the new CPAP device is FULLY DATA CAPABLE. That would mean one of the following:

1] Resmed S8 Elite w/EPR
2] Respironics M Series Pro w/C-Flex

those are the only two straight CPAPs worth getting. I've highlighted the key words in the name.

And frankly, altho the odds are REALLY, REALLY against you seeing as how you have Kaiser, it wouldn't hurt to push HARD for an autoPAP which would mean only:

1] Resmed S8 AutoSet Vantage
2] Respironics M Series Auto w/A-Flex
3] Respironics M Series Auto w/C-Flex
4] Puritan Bennett GoodKnight 420E (the "E" is the key word here)

Especially w/the autoPAPs, but also doable w/the fully data capable CPAPs I've listed, you could eliminate the need for any further titration studies. At least until you could gain access to  REAL sleep doctor, a good one.

Bone up on CPAP therapy here and educate yourself so that you can hold your own w/Kaiser, this sleep doctor AND the DME provider to get the equipment and therapy you need and want. Be diplomatic, but be firm. Even w/Kaiser YOU are the one paying the bill and enduring the benefits and/or consequences of any test, procedure or therapy YOU agree to. YOU always have the final say even it is means going thru Kaiser's appeal process.


_________________
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.
Resmed VPAP Auto. Humidaire 3i, Simplicity & Micro masks, ResScan 3.4, S8 ResLink, Embla oximeter.

My frustration with the machine has brought me to the point where I am contemplating trying to go with out and for periods of time to get my system used to not having it.  Before I was diagnosed, I never had any of the problems that others talk about...I never fell asleep at a red light, woke up with convulsions, etc.  My wife simply said I was snoring alot.  I feel just as rested/not rested with the CPAP as I used to feel without it.  The problem is, now without it I feel worse.

Sleep apnea is a progressive condition.  You may not have been falling asleep at red lights or having daytime drowsiness when you first started getting treatment, but if you had not gone on CPAP, you would have eventually.

Are you really saying that you want to stop using it, and wait until the sleep apnea really wrecks your health, and THEN go on CPAP?  How long do you want to wait, exactly?  Do you want to wait until you have high blood pressure, and diabetes, in addition to the daytime drowsiness?  Or maybe you want to wait until you actually fall asleep at the wheel and kill somebody?

If sleep apnea could be cured by doing throat exercises instead of a CPAP, we'd all be doing throat exercises.  And the conclusion you are drawing is, I believe, too simple:  it isn't muscles that are collapsing, it's soft tissues.  Muscle tone doesn't have anything to do with it.

I'm sorry if I'm sounding harsh, but I did exactly what you're suggesting, and waited until the daytime drowsiness was intolerable before going for treatment.  I also got acid reflux, high blood pressure, and diabetes in the bargain.  The only thing I didn't do was fall asleep at the wheel and kill someone.

CPAP is a relatively simple, noninvasive procedure that cures a host of ills.  I'm thrilled that the solution to my problem was so simple.  No, the mask isn't sexy.  But neither are the bruises in my abdomen from the five injections of insulin I take daily.  If this machine can help you avoid that, why the heck wouldn't you want to use it?

Well, a LOT of what is going on is YOUR ATTITUDE towards CPAP therapy. Obviously, you resent needing the CPAP. Go ahead, go w/o your CPAP for a couple of nights. Go w/o it for several nights or weeks. You aren't harming anyone but yourself and the harm is done GRADUALLY so you might not develope diabetes or high blood pressure or stroke or whatever for years, maybe not even until you are 44.

Very few people feel a tremendous overnight miracle w/CPAP therapy. The vast majority of us experience a gradual improvement in our sleep and rest. AND if you truly need 02 supplementation and haven't been getting it all these years that most certainly would drastically REDUCE any benefits, especially noticeable benefits, of CPAP therapy. For all you know, w/o a fully data capable CPAP, most of your CPAP therapy could be blowing out your mouth or thru mask leaks.

Surgery for a deviated septum is quite successful, if you have a deviated septum. Surgery for chronically enlarged  or infected tonsils can be quite successfu, if one has chronically enlarged or infected tonsilsl. IF one has a badly mis-aligned jaw, that surgery can be fairly successful. The UPPP and other surgery ... it depends on WHAT they consider SUCCESS. Is the success PROVEN by another overnight PSG after healing? MOST any of these surgeries ONLY provide a need for LESS pressure but NOT independence from CPAP therapy. Keep in mind, they can't replace what they took out and EVERY surgery creates some scar tissue (adhesions).

Its your life. You can lead a horse to water, but you can't make it drink. Educate yourself so that you get the correct and best therapy possible. You've already figured out that Kaiser, their sleep doctor and DME provider don't walk on water w/o falling flat on their face on the ice. Have you ever priced a CPAP mask online and compared its cost to your copay for the same mask thru Kaiser?? All you need the doctor for is the script for the CPAP, you don't need a script to buy a mask, etc. online, just the CPAP itself. AND, Respironics and Resmed have recently adopted a MAP (Minimum Advertised Price) policy for ONLINE DME suppliers - call or e-mail and find out what their "unadvertised sale price" for the mask you are interested in is.


_________________
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.
Resmed VPAP Auto. Humidaire 3i, Simplicity & Micro masks, ResScan 3.4, S8 ResLink, Embla oximeter.

CrohnieToo wrote:

Your PROBLEM is being stuck w/a less than desirable sleep doctor.

That says it all right there.  Your doctor is a Grade-A pompous A$$.  Fire him immediately, be sure to let him know exactly WHY.  Then go out and get a better one who actually has the ability to SPEAK to his patients.

No wonder you are disenchanted!

I'm relatively new to the world of xcap compared to you, but I understand what you're experiencing because I've had that very same feelings when I've taken off my mask - only in the morning after the alarm goes off and I need to get my butt out of bed.  I wonder if my ability to just breath normally at night has been forever compromised? Sure feels like I have to really make an inordinate effort just to breath at all.  Obviously, this feeling goes away as soon as I get out of bed, so what exactly is happening?

I believe I've experienced a very real sense of "dependecy", if you will, to xpap. Without, I feel like I can't get breath. With, is like dope - so to speak.  I really do understand your adversion to being "hooked up" and feeling you can't breath without it. If you've not realized a major difference or feeling significantly better as I and many others have, I'd likely feel the same as you.

You've made an interesting observation of how you're being affected and it's totally legit and necessary to ask the questions.  I wish I could give you THE answers.

As some have eluded: Maybe trying newer/better, more flexable machines/masks might help?  Maybe a new sleep study is also in order? The wrong Dr./s can definatly scew your experience as well... you already know this stuff.

Wishing you good health

suubplot wrote:

Here is why I think this...

I was first diagnosed with sleep apnea when I was 26.  Not overwieght, physically active...but my wife said I snored alot.  So I went to the doctor.  They sent me home with a machine to record my sleep.  The next day, the doctor (who spent a total of 3 minutes with me) said I have severe sleep apnea and needed to be on a CPAP with oxygen for the rest of my life.  The only time he looked up to even acknowledge me was when I questioned his decision.  His response (I'm the doctor, not you) was not very comforting. I was then transfered to a "worker" in the department who was to fit my CPAP.  She looked at the chart and said "oxygen...you don't need oxygen" and so didn't put me on it.  She simply fitted my CPAP.

I was diagnosed in 1989 at age 43. Not overweight and physically active played tennis but I did snore a lot and did feel sleepy all day and felt dead on waking up


Here I am, 8 years later and am simply wondering if the whole Sleep Apnea/CPAP thing is a scam.  This is why I feel this way.  I have a background in physical fitness (former certified personal trainer) and have a detailed understanding of how human physiology and anatomy work.  I am not very knowledgable in sleep apnea so I may be drawing too basic of a conclusion...but in relationship to muscle tissue, simply put...if you don't use it, you loose it.  In other words, your muscle tissue will atrophy if you don't use it.  To me, it makes sense that a CPAP in some cases would be doing more HARM than good to the user.  If the soft tissues in the mouth/throat are not forced to work at all (the CPAP forces air in and the pressure holds the tissues open) then they will have no reason to tighten and would, logically, become looser.

I have been on the CPAP from 1989 that is 29 long years and still using it. The night I do not have access to my cpap ends up as a disaster and wake up feeling dead and the entire day is lost. I too wonder some times. My aunt snored like mad and used to fall asleep as she was talking or was caught napping at movies. She never used cpap therapy as it is not even known in India and she lived to a ripe age of 91 years and in good health. This makes me wonder too at times.

I have this conclusion from personal experience.  I have faithfully worn my CPAP 99% of the nights for 8 years.  I now feel that I am dependant on it.  Before my "diagnosis", I would have a bad sleep experience maybe once every couple of months.  Now, if I don't sleep with the CPAP, I can barely make it through the night without complete discomfort, etc.

Agree we do become dependent on cpap therapy. In fact breathing becomes a bit laborious without cpap machine giving the additional pressure. I can sleep without my wife next to me but cannot sleep without my CPAP ever.

My mask broke last night and when I called the doctor today to get a replacement part, they no longer simply send out parts but that I would need to come in and get fitted for one of the new and improved masks.  I am a business owner and pay out of pocket for my medical so to me all I see is that the doctors office has found a way to make some more money off of me.

Yes and No. Yes it is highly commercial and dollar driven industry. Not all sleep apnea specialist or technicians are true specialists. Not all sleep apnea studies are of the golden standard, but then if you have used the same old mask for eight long yeras, it is time to check out all the new stuff that has hit the market since. Take a look at the new Hybrid Mask by Respcare and you might even like it.

I have tried looking at what other options are out there for sleep apnea.  I'm not saying that I don't have it, I'm just saying that I find it hard to believe that the only solution for someone with sleep apnea is to hooked to an uncomfortable, demeaning, confidence busting, cash hog that might be hurting more than it is helping. When I've googled surgery options, I see both "WHAT AN AMAZING THING...CURED MY SLEEP APNEA" AND "THE SURGERY ALMOST KILLED ME".

In 2002 I had laser surgery to my throat and all the floppy tissues in the soft palate was removed. The pain was a killer and I suffered for about two weeks. But then I could not even mimic snoring for about four years.

I continued using the cpap and was happy as larry as I did not suffer any sleepiness during the day.
In 2008 the soft palate has grown with a vengeance and I am snoring badly again even with my nose mask and my sleep apnea has become terrible.

It was only in 2007 I found this wonderful sleep apnea forum and learnt a lot more about sleep apnea. Like you I was stuck with the original Sullivans machine from 1989 to 2002 and with Resmed S6 from 2002 to 2007. I am now renting an Resmed S8 Auto Spirit. I have just learnt that it is not just cpap machines any more, we have Apaps, B paps, Cpaps and Vpaps and what not.

The new Resmed machine I am renting can use a fixed pressure setting (13cms for me) or be set on auto range ( my clinician is now trialing me for two weks on ( 6cms to 15cms pressure range). I am comfortable with 13cms fixed setting but then the mask leaks like a sieve. I find 6cms starting pressure inadequate right now but then leaks are minimal. By the end of the month I will know what suits me best.

The best development in recent times is the Resmed humidifier. I do not suffer from dry tongue and mouth or nose and throat infections since last december.


I just need some stright forward advice that is not given my Kaiser Permanente...as I feel that their only concern is to keep me paying them money every 6 months.

Any help is appreciated...I'm 34 and am tired of feeling like a defect.

Not using the cpap for a few days is not going to kill a young man like you. So just go off the machine for a few days and see how you feel. Chances are that you will feel lousy and use cpap therapy again. Once this happens you will believe in the therapy a lot more and accept it for life and not question it and fight it. The choice has to be yours to use or not to use cpap therapy. Do not do it for the doctors but do it for your good health.

In case you did not know, untreated sleep apnea "CAN" cause weight gain when you hit the 50's, cause hypertension, cause diabetes, even increased platelets and brain attacks. I have put on 20 kilos and weigh 95Kgs now, have BP, Diabetes and high platelets and suffered a brain stem stroke in 2000 and was lucky to get back on my feet.

So it is not just about using or not using the cpap therapy. It is obvious you do not have a caring doctor. But then you will find so many caring people right here in this forum who will answer all your questions. Remember you are not alone and there are over 10 million sleep apnea sufferers in USA alone. Sleep apnea is a disease caused by our life style, fast foods, coca colas, preserved foods and being such workaholics and TV addicts that we neglect our health and bodies until it is too late and expect doctors to fix the health issues with tablets. This culture has to change

Thanks,

MW

Last edited by Ramboaus on Tue Apr 22, 2008 10:49 pm; edited 1 time in total
_________________
Cheers
Ram
http://www.vadclub.com

Quote:

They sent me home with a machine to record my sleep.

I did not realize this was done.  What exactly did this "machine" monitor...blood O2 saturations?

Just curious.


_________________
RemStar Pro M-Series with C-Flex jamming 10 cm H20 down my piehole And finally getting a good night's sleep...every night!!!! I'm a 45 year old FMAWG...and proud of it.