Hi All,
A little depressed. Tried to save time by seeing two doctors today and both gave me bad news.
The second one was the urologist. Had a spike in my PSA result so now have to get a biopsy on the old prostate. Just getting tired of all the hospital time I've put in the past three years.
The first one really ticked me off. He is the sleep specialist and I think he is fairly well regarded. This is only the second time I've actually seen him, 5 minutes the first time 10 minutes this time.
The jist of it is this - he had prescribed a CPAP unit with a pressure of 8 cm. I purchased the Resp Auto/Cflex which supplier set at 6 cm low and 8 cm high. I readjusted to 8 cm low and 16 cm high and told him this today.
I had also purchased the smart card reader & software. It shows the 90% pressure at 12 cm quite consistantly.
The doctor advised to reset to 8 cm as he cannot be responsible for my treatment if he does not know what pressure I am at which can only be achieved with a CPAP. He said the APAPs are not reliable for treatment as the pressures are not accurate and can actually cause apneas. He advised APAPs respond only by detecting air pressure changes which is not sufficient for proper treatment. Taking all the factors into consideration from the titration study it was determined that my pressure is 8 cm and this should not be tinkered with. Particularly with the very high 16 cm level (on a few occasions I did hit this with my own APAP).
He also said APAPs are not approved in Ontario and can show me many studies proving they are not effective. The only reason I got the $780 govt funding is that the unit can also function as a CPAP. He said the manufacturers are the only ones flogging APAPs as it is in their interests to do so.
He made it quite clear that he would not be responsible for my treatment if I did not follow the prescription and if not, I should get another doctor.
Shortly after I got home the supplier called and asked me to bring the machine in as the doctor called them today with a new prescription. I asked what the prescription was for and she said 8 cm. Same old. They seemed a little upset when I told them I would bring it in at some time in the future but not for pressure adjustment.
When this all started last October I tried to do a lot of research and particularly spent a lot of time on this forum. I concluded that the best avenue would be to get a machine with the latest technology and the most features because I would be using it for a long time. Now my doctor infers this was not necessary as a CPAP is the better machine and the only one needed.
I know how many of the long term posters here feel about this subject and maybe that's why I feel so let down today. It just doesn't seem reasonable to me that new technology is inferior to old and that my doctor is so dead set against APAP. The guy does specialize in this.
Any cheery thoughts out there?
Bob F
PS - I think I'm going to start my weekend tonight.
Not having a good day!
9 posts
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Not having a good day!
unclebob
Hi,
Don't let the PSA get you down. 1 of 3 gives false positives. As for your sleep doc. Look out in the parking lot and see what he is driving. I'll bet its a new , modern automobile and not a Desoto. Find a new Doc.
Here are a few articles to show your doc.
http://www.sleepreviewmag.com/Articles. ... d=S0207F02
http://www.sleepreviewmag.com/Articles. ... d=S0407F02
Cheers,
Chris
Don't let the PSA get you down. 1 of 3 gives false positives. As for your sleep doc. Look out in the parking lot and see what he is driving. I'll bet its a new , modern automobile and not a Desoto. Find a new Doc.
Here are a few articles to show your doc.
http://www.sleepreviewmag.com/Articles. ... d=S0207F02
http://www.sleepreviewmag.com/Articles. ... d=S0407F02
Cheers,
Chris
Unclebob,
From your story, I get this strange feeling that your sleep doc is reacting more to fear of potential lawsuits than to any concern for you. Is it just me, or do you or others get that feeling? If so, that's totally ridiculous.
Does he also come off sounding condescending? Bet he does. The tricky thing is we are bound by the prescription procedure for our treatment. But this is different from any pill. What does he think the increased pressure is going to do, blow your lungs out? If so, then what about us other patients with high prescribed pressures. Guess we're at risk too? And what evidence does he have that the increased pressure will cause apnea or whatever? As to the sleep doctor, the term "thou doth protest too much" comes to my mind.
Is there a chance you can find a different sleep doctor? I don't care what his credentials are, something just isn't right. Even if the man were correct, something in his delivery and his manner of explanation simply does not ring true. Please don't let the *$&#($#! get you down. God, this makes me mad!
And they wonder why we get depressed!
Hang in there.
Linda
From your story, I get this strange feeling that your sleep doc is reacting more to fear of potential lawsuits than to any concern for you. Is it just me, or do you or others get that feeling? If so, that's totally ridiculous.
Does he also come off sounding condescending? Bet he does. The tricky thing is we are bound by the prescription procedure for our treatment. But this is different from any pill. What does he think the increased pressure is going to do, blow your lungs out? If so, then what about us other patients with high prescribed pressures. Guess we're at risk too? And what evidence does he have that the increased pressure will cause apnea or whatever? As to the sleep doctor, the term "thou doth protest too much" comes to my mind.
Is there a chance you can find a different sleep doctor? I don't care what his credentials are, something just isn't right. Even if the man were correct, something in his delivery and his manner of explanation simply does not ring true. Please don't let the *$&#($#! get you down. God, this makes me mad!
And they wonder why we get depressed!
Hang in there.
Linda
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wading thru the muck!
- Posts: 2799
- Joined: Tue Oct 19, 2004 11:42 am
It sounds like he hasn't kept up on his reading. I doubt there is ANYTHING you are going to do that will change his mind. The BIG question is, how do you feel? If you feel rested, then find another doc and don't worry about it. If you don't feel rested then either a) it isn't working for you i.e. the algorithm is not right for you, or b) you have some other underlying condition. If you are unsure, then set the high and the low on your machine to 8 for a week and see what you AHI is.
From the second of the articles in that Chrisp provided links to
"There is conflicting evidence as to whether APAP is more effective in the treatment of OSA than traditional CPAP. Although there is considerable evidence that “APAP reduced the apnea plus hypopnea index to acceptable levels (AHI <10/hour) in greater than 80% to 95% of OSA patients studied,”3 the previously mentioned task force noted that sufficient direct comparisons between CPAP, APAP, and placebo are lacking. Importantly, many patients notice a difference and prefer APAP therapy."
So basically even if there no big improvement in using an apap over a cpap there is loss of effectiveness either.
Your doc is in the information slow lane. Tell him your going to sleep on his advice. If you wake up feeling pretty good, find another doctor. If you wake up feeling lousy find another doctor anyway. Maybe someone who can spend more than an average of seven and a half minutes a visit.
Allan
"There is conflicting evidence as to whether APAP is more effective in the treatment of OSA than traditional CPAP. Although there is considerable evidence that “APAP reduced the apnea plus hypopnea index to acceptable levels (AHI <10/hour) in greater than 80% to 95% of OSA patients studied,”3 the previously mentioned task force noted that sufficient direct comparisons between CPAP, APAP, and placebo are lacking. Importantly, many patients notice a difference and prefer APAP therapy."
So basically even if there no big improvement in using an apap over a cpap there is loss of effectiveness either.
Your doc is in the information slow lane. Tell him your going to sleep on his advice. If you wake up feeling pretty good, find another doctor. If you wake up feeling lousy find another doctor anyway. Maybe someone who can spend more than an average of seven and a half minutes a visit.
Allan
Sleep docs
Hi UncleBob,
Sorry to hear about your difficulties.
I also HAD a so called reputable sleep doc. I went to him because the NasalAire II interface was too small and was leaking and causing my nose to bleed because it moved so much. His answer was, "You're claustrophobic". I responded that this had nothing to do with claustrophobia, the NAII doesn't fit. He said again, "you're claustrophobic" and left.
I spoke with the nice RT, who got me set up with a larger size, which solved my problem, and also asked him to recommend another doctor. He did, and I am cautiously optimistic that the new guy will work WITH me and not order me around and make irrelevant comments like I was an empty headed blonde. (I AM blonde, but NOT empty headed!)
I guess that what I am trying to say is that if your doctor is not willing to listen to you and work with you, then you need to find someone else. You are bringing him business. If the customer service is poor, go elsewhere! Don't continue rewarding him with the financial gain from your business.
The RT's at a sleep center get to know the docs. I later encountered a different RT who rolled his eyes when I started off on the first doc -- he said that no one gets along with him and that he has a bad attitude. That may be an avenue for you to explore in your search for a new doc, if that is what you decide to do. You may want to involve your primary care doc (if it works the same in Canada) -- mine worked with me to get the insurance angle straight.
I hope that this helps a little. I know how discouraging this kind of news about your health can be, but you will find your way through the maze.
Good luck, and sleep well,
Jane
Sorry to hear about your difficulties.
I also HAD a so called reputable sleep doc. I went to him because the NasalAire II interface was too small and was leaking and causing my nose to bleed because it moved so much. His answer was, "You're claustrophobic". I responded that this had nothing to do with claustrophobia, the NAII doesn't fit. He said again, "you're claustrophobic" and left.
I spoke with the nice RT, who got me set up with a larger size, which solved my problem, and also asked him to recommend another doctor. He did, and I am cautiously optimistic that the new guy will work WITH me and not order me around and make irrelevant comments like I was an empty headed blonde. (I AM blonde, but NOT empty headed!)
I guess that what I am trying to say is that if your doctor is not willing to listen to you and work with you, then you need to find someone else. You are bringing him business. If the customer service is poor, go elsewhere! Don't continue rewarding him with the financial gain from your business.
The RT's at a sleep center get to know the docs. I later encountered a different RT who rolled his eyes when I started off on the first doc -- he said that no one gets along with him and that he has a bad attitude. That may be an avenue for you to explore in your search for a new doc, if that is what you decide to do. You may want to involve your primary care doc (if it works the same in Canada) -- mine worked with me to get the insurance angle straight.
I hope that this helps a little. I know how discouraging this kind of news about your health can be, but you will find your way through the maze.
Good luck, and sleep well,
Jane
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Janelle
Bob, I'd also call your insurance to check out if APAPs are not approved for use in Ontario. I'm sure they would know. Because if one Dr. is saying this, then I'm sure others are too, and you need to know! You need to know so you can have the ammunition to dispute their misinformation, and to insist on proper care the way you want it and not by some archaic torture machine.
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