CPAPtalk.com

FL andy, I understand your concern about people advising others to take their own treatment in their own hands. Certainly it's better to consult with a good, knowledgeable, caring, very smart sleep doctor who is up to speed on equipment available, is openminded, understands comfort issues for cpap users, and has the time to really work with each patient.

Unfortunately that's a lot for one doctor to be. The doctor may be a crackerjack at diagnosis, but when it comes to compliance issues, most patients are thrown to the wolves, and the doctor is little or no help.

I believe it really is up to the patient to educate himself in one speciality - his own sleep disorder. That doesn't mean becoming a doctor or studying medicine in general. It means learning as much as possible about one's own sleep disordered breathing and how best to treat it.

If a person has other health problems along with OSA, sure they need a good doctor in the loop. But for simple OSA, it is certainly within the reach of anyone with average intelligence and the time to research the internet, especially the apnea message boards.

Educating oneself in the one specialty of one's own sleep disorder can make you an effective partner with a good doctor in treatment. But most of all it helps one understand better whether a doctor or a DME is recommending the best kind of treatment and equipment in the first place.

If a person is lucky enough to have a good doctor and/or a good RT, consulting with them, that's ideal. If one's treatment is going well following their recommendations, that's great.

Without insurance it would more likely be thousands of dollars, not just a couple of hundred dollars, to get treatment. What if the doctor's appointment led to a sleep study, then to a separate titration, then to follow-up appointments, etc.? It could add up very fast.

And then the uninsured person is still facing buying equipment. Or rely on a charitable group to provide whatever they can whether it's comfortable enough to actually use or not?

If a person is fortunate enough to find a good doctor they can trust, that's wonderful. If the person has good insurance coverage, that's wonderful, too.

Others, especially people without insurance or sufficient insurance, absolutely need to do their own research, become knowledgeable about their own disorder(s) and become their own advocate in their own health treatment, imho.

The unfortunate alternative (look at compliance dropout estimates) is to not get well.

I understand how you feel. In a perfect world, I would rather take my plain ole body to bed and not have to strap on anything first.
When I had my first study, they didn't have the FF masks, I guess. I was a mouth breather. So I just continued on with OSA. Five or so years later, I heard of Radiofrequency treatment to the soft palate and base of the tongue. I found a doctor to do it, but had to have a 2nd study because he was actually in a study to confirm effectiveness.
Insurance did not pay, so we were out of pocket over $2000, which a lot of the cost comes from the tips which have to be new each time. I had probably 4 treatments of the soft palate and about 3 of the tongue. Can't remember for sure, but maybe 3-5 burns to each, each treatment. I had to pony up another $900 for the last tongue treatment.
It works like this. Tiny burns are made in your tissues. As these heal, they contract, thus tightening up the flabby tissue that falls down and obstructs your airway. The base of the tongue is treated to reduce the volumn there and make the air passage larger.
I had to quit treatment because I could no longer afford to pay $900. My soft palate had all I needed, but my tongue needed more.
The treatment was like this. They give you shots to numb the tissue, so you feel nothing. But you better hurry and get to the pharmacy to get the pain pills, because when the numb wears off I guarantee you a sore throat that will make you climb the walls, pace, and wave your hands frantically. Picture a blowtorch taken to your throat....
Then the swelling starts. My doctor liked to admit his patients for that first night, but without insurance, I couldn't. I sat up all night trying to breathe through a pinhole. My throat was so swollen. The pain pills made it bearable, and the sitting up to breath was the worst of it. 2nd night I could slump down a little, by the 3rd night I could go to bed. Your throat has these nasty gray/white patches which are basically sores.
Once I completed as much treatment as I could afford, I'd say my OSA was about 50% better. It got me off my stomach where I slept with my chin on my hands and head thrown back to open my airway, to being able to sleep on my sides. By two years down the road, I had lost a little of the tone, but still am able to sleep on my sides.
That's where I am now. Still diagnosed with over 40 events an hour, classified severe. Was it worth it? Probably...as I'd probably be dead by now without the improvement I got. Now that there are the full face masks, I am EAGER for treatment.

[quote="rested gal"]FL andy, I understand your concern about >people advising others to take their own treatment in their own >hands. Certainly it's better to consult with a good, >knowledgeable, caring, very smart sleep doctor who is up to >speed on equipment available, is openminded, understands >comfort issues for cpap users, and has the time to really work >with each patient.

>Unfortunately that's a lot for one doctor to be. The doctor may >be a crackerjack at diagnosis, but when it comes to compliance >issues, most patients are thrown to the wolves, and the doctor >is little or no help. (end quote)


I do not think that is a lot for one doctor. It is called a good sleep doctor who is certified by his state as being tested and found knowledgeable in sleep disorders.

Most doctors care about patients. They do the best they can (read as: the best they know how to do).

Therein lies the problem.

It is fairly easy to use a good, qualified doctor. Even if I get a referral to a "specialist" I will normally telephone that "specialist's" office and ask if that doctor is Board Certified (by the state in which he pratices) in the specialty I need. It may take several phone calls, but it sure is worth it.

A board certified sleep disorder doctor is far more likely to follow up on patients than one who treats the entire spectrum of diseases.

RG quote: >"I believe it really is up to the patient to educate >himself in one speciality - his own sleep disorder. That doesn't >mean becoming a doctor or studying medicine in general. It >means learning as much as possible about one's own sleep >disordered breathing and how best to treat it."<

I totally agree.

RG quote: >"If a person has other health problems along with >OSA, sure they need a good doctor in the loop. But for >***simple OSA***, it is certainly within the reach of anyone >with average intelligence and the time to research the internet, >especially the apnea message boards."< (emphasis mine)

Neither my Internist, nor the sleep center doctor who interpreted the study and recommended cpap, nor I ever suspected I had a pulmonary disorder that absolutely required the bi-level pressure of a BiPap machine. I found out that the constant pressure of a cpap machine might possibly kill me.

I have been seeing an outstanding, regionally respected Internist quarterly for five years for hypertension, etc. (At age 70 you get the pleasure of seeing doctors more often.) I have had my chest xrayed and listened to for five years, and nothing was suspected. But, because of the apnea, two other tests were run by the sleep disorder specialist and the unusual pulmonary disorder was discovered.

And the only way I found that out was by firing one DME and hiring another. My old DME wan not doing his job, so I fired him. To get another DME I interviewed nine or ten, face to face, for a few minutes before I found one whom I trusted. She was the one who convinced me I needed a certified pulmonologist.

As far as insured or non-insured, the additional cost of using a board certified sleep doctor is only forty dollars more than the garden variety pulmonologist. Yes, if one has no insurance, it would cost about $200 to see a good sleep specialist. But even that is only $120 more than a garden variety family doctor.

All other costs remain the same.

If someone chooses to forego a sleep study and wants some doctor to prescribe and Autopap to self diagnose themself - then that person should know the risks involved.

Maybe the only way some people will know the risk of self-diagnosis is if this message board tells them.

I will forever stand on the point that a non-medically qualified person should never, ever recommend doing away with a doctor's advice - even for garden variety OSA - because it just may NOT BE garden variety.

I am sorry I feel so strongly about this, but I do. I do not want to hurt anyone's feelings, but I have to say what I think also.

Respectfully, Andy

FL Andy,

I have a very different take on things than you do. I think we should treat Doctors like we treat any other professional: As an expert source of advice.

There are good doctors and bad doctors, and based on insurance, some people don't have the luxury of seeing several until they find a GOOD one.

I don't know a whole lot about cars. I do, however, have a number of friends who do. When I have a problem with the car, I'll gather the information I can, so that when I go to the mechanic, if he tries to suggest changing the transmission when the problem is actually with the muffler (or most likely is), I know enough not to get taken in by someone who is at best inept, and at worst, unscrupulous.

I don't believe we should treat doctors as gods among men. They aren't. They are people. They can make mistakes. And their experience is based largely on groups of people, they can't possibly know your own body as well as you do.

So I wouldn't tell someone to insist on an APAP, but I *WOULD* say to do some research, get acquainted with the options, and then go in and discuss with the doctor what you think you want. Listen to what he/she has to say, and determine whether it sounds like they have good reasons for disagreeing with you (if they do), or if they're just blowing smoke because it's all they know and they're unwilling to venture into an area they're not familiar with.

Medical care is a partnership. Your body, their expertise, *YOUR* decisions as to what to do, their *RECOMMENDATIONS*.

Keep that in mind.

Liam, who clearly has a problem with authority.

Hi Liam,

> I have a very different take on things than you do.<
It doesn't seem that your take and my take differ so much.

> I don't believe we should treat doctors as gods among men. They aren't. They are people. They can make mistakes. And their experience is based largely on groups of people, they can't possibly know your own body as well as you do. <

I don't treat doctors like gods. I have fired doctors for more than 50 years now. Yes, doctors do make mistakes, but a Board Certified doctor most likely makes far fewer mistakes in his specialty than the garden variety doctor not in that specialty.

And my doctors know, *medically*, my body better than I do.

>So I wouldn't tell someone to insist on an APAP, but I *WOULD* say to do some research, get acquainted with the options, and then go in and discuss with the doctor what you think you want. Listen to what he/she has to say, and determine whether it sounds like they have good reasons for disagreeing with you (if they do), or if they're just blowing smoke because it's all they know...<

I totally agree: (1) do not insist on an APAP , (2) Yes, I do not only some research but a whole lot of research before I accept treatment from anyone, and I write to others in these message boards to do so also ( 3) When I see a doctor he normally asks why I am there, so I tell him or her the reason I came and explain what I think caused the problem. Doesn't everyone? and (4) I listen to what the doctor has to say and - especially - his/her reasoning (also known as diagnosis, prognosis and suggested treatment). If that doctor is "blowing smoke, I politely leave and fire him/her. Normally, I do not create a scene before leaving.

>Medical care is a partnership. Your body, their expertise, *YOUR* decisions as to what to do, their *RECOMMENDATIONS*. <

Yes, they recommend and I decide. I agree.

If I don't agree with their treatment recommendations I fire them. I can do that because I hired them. But I do not tell them their diagnosis and prognosis are wrong until I get a second *medical* opinion.

> Keep that in mind. <
It was already in my mind. Because that is what I wrote.

Liam, why are you so upset? Did I offend you? If I did I am truly, truly sorry and I apologize.

With sincerity,
Andy

FL andy wrote:And my doctors know, *medically*, my body better than I do.

This may be the case, but many times Docs are woefully lacking in regard to the comfort of their patients. Many are fixated on the "clinical" view of things. As real everday users, we try to inform new users about ways to increase comfort and thus increase comliance. The medically best treatment is no good if the patient doesn't use it.

Liam is painfully aware of the issue of lacking comfort in the use of a CPAP. In his case the best medical advice in the world would do him no good because he could not tolerate a cpap. I his case this treatment is all about comfort because without it he is without treatment.

I might add that doctors sometimes are quick to assume it's all "in your head" when they aren't able to find anything wrong with you.

A co-worker just today told me how he's been complaining of chest pains which come and go. The cardiologist did a stress test on him and claimed there was nothing wrong with him, and even referred him to a phychiatrist...!! Instead of ordering different tests, they send him to a shrink!

The old "it's all in your head" philosophy, when they can't admit they just don't know.

My mother had a doctor who couldn't diagnosis what was eventually found to be painful interstitial systitis (?sp), and sent her to a shrink. It wasn't in her "head" -- there was a REAL condition, and it wasn't in her head!

For many people -- they're depressed because they're sick, not sick because they're depressed.

This is not meant to ignor the importance and severity of clinical depression, a real illness afflicting many. I mean no disrespect to those sufferers. But lumping all people with possible other physical problems along with true depression sufferers only worsens the problem and does a disservice to those who really do need help for their depression.


Linda, she vents

FL andy wrote:Liam, why are you so upset? Did I offend you? If I did I am truly, truly sorry and I apologize.

With sincerity,
Andy

Clearly, I mis-read your message. I got the distinct impression you were suggesting that the person NOT question their doctor, which was why I wanted to disagree.

However, it appears it was I who was in error. My apologies.

Liam, who should probably read things fully BEFORE responding.

Good points, Wader. It's definitely on the patient to make sure the treatment is one he/she can tolerate, and to make noise when the doctor is too focused on what they should do and too little focused on how to do it in a way that is most conducive to staying compliant.

I think that's the spirit of the "Insist on an auto", because say what you will, and APAP is much more comfortable (according to everyone I know who has tried one). I didn't get the sense that anyone was seriously suggesting an AUTO as a substitute for a proper sleep study.

Liam, trying to be as comfortable as he can be.

First off, Rustynail, welcome to sunny tropical wichita. I hope you find a good experience here. Easier said than done. How long will you be here?

As for everyone else that has posted info. From the bottom of my heart, thank you thank you thank you. Reading all this information available to me, it was a pretty discouraging evening. But, this is what I wanted, was info from people that are "living" with this and are still going. It is encouraging. Thanks again to all of you.

Keep your fingers crossed for me. Next appt on Weds.

Hi Misfit!

Have to disagree with you on that. I've been to quite a few places in the world (love the hills, mountains and forests) but I must say I find Wichita and area to be absolutely charming. Friendly people, so many museums to visit , the Zoo is great and lets not forget the cuisine (b&c creations is something else) and yet still not the stress of a "big" city. Tomorrow dinner and entertainment at the "something-or-other" Rose (Alzheimers?). Unfortunately I will wave goodbye to my dear brother and lovely Wichita tuesday next week.

Don't be discouraged by all the information, it's quite a lot to digest but invaluable to know that there is a place to go where others "know" what you are going thru and have some great (and some perhaps not so great) advice. I'll send good thoughts in your direction on Wednesday!

Andy, you are right to bring out treatment issues you feel strongly about. You make very good points, particularly about other health problems that could be underlying. You and I have the same take on using a good doctor - if one can. I'm glad the different views we have in other aspects can be strongly held with no offense intended or taken.

Liam mentioned this: "I didn't get the sense that anyone was seriously suggesting an AUTO as a substitute for a proper sleep study."

Actually there is a very well respected board certified sleep specialist who does recommend putting patients on auto-titrating cpaps (autopaps) without a PSG sleep study at all, under certain circumstances. One of the circumstances she brings up is something that unfortunately affects a great number of people - namely, no insurance and limited financial means.

Many of the uninsured people simply cannot afford a sleep study at all, much less shop around until they find just the right board certified specialist.

At least one board certified sleep doctor feels pretty strongly about the benefits of prescribing autopap without a PSG:

A link posted by Mikesus in March, 2005

Powerpoint presentation at a meeting of the American Lung Association of the Central Coast - November 2004

The board certified sleep doctor is:
Barbara Phillips, MD, MSPH, FCCP
Professor, Division of Pulmonary Critical Care and Sleep Medicine
Director of the Samaritan Sleep Center
Department of Internal Medicine
University of KY College of Medicine
Lexington, KY

To me, that is a board certified sleep specialist who is looking at the overall problem of undiagnosed sleep apnea in a very logical way and is proposing a common sense approach to deal with it. Autopap prescribed right from the start for patients who can barely afford a machine at all, much less add on the cost of a formal PSG in a clinic, or even a home study.

It makes sense to me... using the autopap as the most affordable "study" as well as immediate treatment combined for those patients who cannot afford anything more.

I see little difference between which way the prescription for autopap comes about - either through the primary care physician educating himself about sleep apnea and looking for signs of it in his patients, or through a patient educating himself about it and directly asking the doctor for an Rx for autopap.

On the other hand, what happens if an uninsured person saves up money to go see a board certified specialist and is unlucky enough to run into a board certified sleep doctors who absolutely will not prescribe autopaps no matter what. Keep shopping for another and another while the hard earned saved-up money keeps going down the drain?

Sat Feb 19, 2005 subject: "Sleep Doctor" doesn't like autopaps

The medically uninsured OSA sufferer may be spending all he can when he's at the end of his rope. Often it's only out of desperation that he/she finally goes to a "regular doctor" about the exhaustion.

One can only hope that the non-board-certified family doc is savvy enough to recognize plain garden variety OSA. And do something about it right then and there rather than say "You need a sleep study" or "You should see a sleep specialist." A study the uninsured patient may not ever have, because he can't afford that plus the equipment he'll need to treat his sleep disordered breathing.

He will still be out there driving sleep impaired, though, because he has to. He will still be adding to rising hospital and insurance costs when he's rushed to a hospital that has to take him in after a heart attack.

Risky, perhaps... not knowing if the patient has an unusual, hard to find medical problem, as you did, Andy.

Imperfect, yes... not knowing if the patient has only simple OSA that needs to be addressed.

But better than no treatment at all for many who are uninsured.

And not all that bad a route for those who feel comfortable about educating themselves and taking an active role in their own treatment, imho.

rested gal wrote: snip
Actually there is a very well respected board certified sleep specialist who does recommend putting patients on auto-titrating cpaps (autopaps) without a PSG sleep study at all, under certain circumstances. One of the circumstances she brings up is something that unfortunately affects a great number of people - namely, no insurance and limited financial means.

Many of the uninsured people simply cannot afford a sleep study at all, much less shop around until they find just the right board certified specialist.

At least one board certified sleep doctor feels pretty strongly about the benefits of prescribing autopap without a PSG:

A link posted by Mikesus in March, 2005

Powerpoint presentation at a meeting of the American Lung Association of the Central Coast - November 2004
snip
The medically uninsured OSA sufferer may be spending all he can when he's at the end of his rope. Often it's only out of desperation that he/she finally goes to a "regular doctor" about the exhaustion.
snip
Risky, perhaps... not knowing if the patient has an unusual, hard to find medical problem...Imperfect, yes... not knowing if the patient has only simple OSA that needs to be addressed.

But better than no treatment at all for many who are uninsured.

And not all that bad a route for those who feel comfortable about educating themselves and taking an active role in their own treatment, imho.

RG, Mikesus, and others:

I see your point (fianally) and stand corrected.

If those who are uninsured fail to get treatment only because they lack the funds, then there should be a way for them to receive relief and reduce their risk of major damage. And yes. it is much better to use an APAP than not receive any treatment.

But, if a person does have insurance, I think that - once sleep apnea is *suspected* - their best choice is to first get to a doctor who really knows the disorder and knows the treatment options, including equipment. Going to such a doctor most likely saved my life (for a few years anyway).

I will cease posting the views I have been posting.

Andy

rested gal wrote:Liam mentioned this: "I didn't get the sense that anyone was seriously suggesting an AUTO as a substitute for a proper sleep study."

Actually there is a very well respected board certified sleep specialist who does recommend putting patients on auto-titrating cpaps (autopaps) without a PSG sleep study at all, under certain circumstances. One of the circumstances she brings up is something that unfortunately affects a great number of people - namely, no insurance and limited financial means.

Good point, but in that case I very much agree with FL Andy, it's a choice that should be made with a doctor, not by a batch of morons you've never met posting meaningless drivel on a website somewhere (or am I projecting? ).

I think Andy's objection was someone on here who recently told a newbie to insist on Auto under all circumstances, and I don't believe there were any "I can't afford this, so I'll just skip it" considerations.

Liam, correcting himself. If he'd take more time posting initially, he wouldn't have to do this as often.

Andy - you make a number of good points, however, there are places in this world where a "Sleep Specialist" is hundreds if not thousands of miles away. Should those folks forgo treatment until they can be seen? The jury is still out on that one... But there are a number of opinions that are leaning towards "When in doubt, pressurize the snout"

Another problem is that all of this is rather new. The doctors themselves are trying to figure out how, when and where treatment should be administered.

And then there are folks that have a myriad of medical problems. See my other post regarding when a BIPAP (bilevel) SHOULD be used, (at least according to the consensus at the moment). If anyone has a number of conditions that could affect their airway, they should NOT be taking general advice from ANYONE. Their conditions should be monitored by specialists working together to treat them as a whole.