A Tale of Two Sleep Labs

[Apappy]

I would just like to see if others have had similar experiences. This took place in Germany within the last two months.

At Sleep Lab No. 1, where I spent 4 nights (two without a mask and two with a nose mask), I was diagnosed with severe apnea (RDI 51.5/h). With nCPAP pressure of 14.6 the second two nights I got to RDI 8.4/h. I supposedly slept 82% (which I doubt very much) of the bed time. The primary data was not given to me, and I had only the doctor's summary. There was no differentiation of back vs. side positions. I was given a full-face mask and CPAP of 14.6 and told to live with it.

This experience frightened me so much that I went to another sleep lab (with a much better reputation), spent two nights (one without mask, one with) and got what I suppose is the equivalent diagnosis, but differentiated as AHI 60.8 back and AHI 10.8 side. The second night brought me to AHI 2.8 back and 0.8 side with a nose mask and APAP 6-15, which is much easier to take. I was given the primary data sheets.

My suspicion is that the doctor in Lab 1 did not properly evaluate the data, even though I spent twice as long in her lab. The failure to distinguish back and side positions, for example, seems to me grossly negligent, and I wonder if she looked at the data carefully.

Are you aware of such gross differences in sleep labs in your country? What do you think of this experience?

[Sparticus]

I would just like to see if others have had similar experiences. This took place in Germany within the last two months.

At Sleep Lab No. 1, where I spent 4 nights (two without a mask and two with a nose mask), I was diagnosed with severe apnea (RDI 51.5/h). With nCPAP pressure of 14.6 the second two nights I got to RDI 8.4/h. I supposedly slept 82% (which I doubt very much) of the bed time. The primary data was not given to me, and I had only the doctor's summary. There was no differentiation of back vs. side positions. I was given a full-face mask and CPAP of 14.6 and told to live with it.

This experience frightened me so much that I went to another sleep lab (with a much better reputation), spent two nights (one without mask, one with) and got what I suppose is the equivalent diagnosis, but differentiated as AHI 60.8 back and AHI 10.8 side. The second night brought me to AHI 2.8 back and 0.8 side with a nose mask and APAP 6-15, which is much easier to take. I was given the primary data sheets.

My suspicion is that the doctor in Lab 1 did not properly evaluate the data, even though I spent twice as long in her lab. The failure to distinguish back and side positions, for example, seems to me grossly negligent, and I wonder if she looked at the data carefully.

Are you aware of such gross differences in sleep labs in your country? What do you think of this experience?

I would say its probably the Norm With ever increasing patients it can only get worse. Soon I gather any sign of osa and out comes the mask and machines and thats if your lucky, with more and more cut-backs I cannot see how the NHS can function with ever increasing number of new cases. Again another reason why self-regulating is a far better option for the clinics, especially those that have just a desk and a phone number. I believe that the knowledge on this forum is farm more advance than what you can get at the clinic. Yes you can get your sats and your ahi readings but most people are more concerned about sleeping positions and mask leaks than why their AHI is 2 points higher than the previous night. I would love to stat chance but at the moment Im just glad if I can go through the day without yawning then I ken its worked the previous night.

[Fredxx]

I think calling the first clinic "grossly negligent" is a bit strong. From what you say, both diagnosed you as having severe OSA, and both diagnosed you as needing a pressure of 15 to control it. Ultimately, the difference to you of what you need sleeping on your back or on your side is irrelevant, unless you can train yourself to sleep only in one position. Had the second clinic issued a CPAP as well, instead of an APAP machine, it would have been set the same as the one issued by the first.

What your experience really shows is that the way a clinic deals with OSA sufferers varies widely, and unfortunately, the first description you gave seems to be the more normal position. The medical profession generally seems scared to let people see the full information from tests, preferring to only let them have the minimum interpreted results. Doctors feel that if patients have the full data, they will start misinterpreting it and questioning their judgement, and they see this as a problem to be avoided...tell them they are ill, and this is the treatment and hopefully they will go away, and not have the data to sue if I got it wrong.

The medical profession is slowly moving to being more open and including patients in the diagnosis. The best practitioners are learning that patients that have information available and properly explained tend to be more accepting of the treatments they have, and often give valuable insights and experience that can be passed on to the treatment of others.

The first clinic you described was of the old "we are the experts, you accept the diagnosis and live with it" brigade, the second was the more modern "lets work together to manage your condition". Both actually told you the same thing, but the second included you in the diagnosis, and I am guessing if they had only had CPAP to give you instead of APAP you would have still walked away happier even though the diagnosis and treatment would have been the same. The fact they gave you better equipment probably comes from the fact they work with the patients to understand how they feel and manage their condition.

[Apappy]

I think calling the first clinic "grossly negligent" is a bit strong. From what you say, both diagnosed you as having severe OSA, and both diagnosed you as needing a pressure of 15 to control it. Ultimately, the difference to you of what you need sleeping on your back or on your side is irrelevant, unless you can train yourself to sleep only in one position. Had the second clinic issued a CPAP as well, instead of an APAP machine, it would have been set the same as the one issued by the first.

What your experience really shows is that the way a clinic deals with OSA sufferers varies widely, and unfortunately, the first description you gave seems to be the more normal position. The medical profession generally seems scared to let people see the full information from tests, preferring to only let them have the minimum interpreted results. Doctors feel that if patients have the full data, they will start misinterpreting it and questioning their judgement, and they see this as a problem to be avoided...tell them they are ill, and this is the treatment and hopefully they will go away, and not have the data to sue if I got it wrong.

The medical profession is slowly moving to being more open and including patients in the diagnosis. The best practitioners are learning that patients that have information available and properly explained tend to be more accepting of the treatments they have, and often give valuable insights and experience that can be passed on to the treatment of others.

The first clinic you described was of the old "we are the experts, you accept the diagnosis and live with it" brigade, the second was the more modern "lets work together to manage your condition". Both actually told you the same thing, but the second included you in the diagnosis, and I am guessing if they had only had CPAP to give you instead of APAP you would have still walked away happier even though the diagnosis and treatment would have been the same. The fact they gave you better equipment probably comes from the fact they work with the patients to understand how they feel and manage their condition.

Do you really feel it is only a minor mistake, or not even that, to order CPAP 14.6 vs. APAP 6-15? The difference is enormous. Doctor No. 2 (the good one) also told me that such high pressure can be harmful to the heart and lungs, and even Doctor No. 1 (the bad one) told me (part of what frightened me to death) that it could lead to more central apneas which might require more drastic treatment (forced breathing, whatever those machines are called). It is much simpler and better to try to sleep on my side, which I did not do so much in the labs due to the electrodes, but at least I know that Lab 2 did get some data from both positions. I don't think Lab 1 did, and most of the sleeping that I did there (if any, certainly not 82% as they reported!) was probably very light sleep on my back. Lab 2 gave me a sleeping pill both nights to make sure I slept more or less normally, Lab 1 did not -- hence I spent most of the night in Lab. 1 lying awake on my back. You call it "old school" to withhold the data, as Lab 1 did (also from colleagues, by the way), and say "Trust me," but in this I think it borders on malpractice. (Doctor No. 2, by the way, agrees with me!)