Sleep doctor thinks clinical software cannot detect centrals

[pianomagoo]

Had an appointment this morning with sleep doctor to discuss cpap therapy getting worse rather than better. I brought in printouts of one week of downloaded Sandman therapy data which detected a lot of central hypopneas and some central apneas with cardiac oscillations. He already saw a report of the first month of cpap data and agreed it was up and down as were the following months of Rescan detailed data.

I explained some of the side effects I was having and asked about another sleep study because of the centrals. He told me I had to wait the full year before having another study due to OHIP regulations, or I would have to pay for the study myself. I then told him that I was very concerned about the centrals and would like to be on the proper machine to deal with mixed apnea. According to Medical journals cpap, apap, bpap and bilevel are not good for mixed apnea and that a Vpap is the machine that should be used. His reaction was that a Vpap costs over 6000.00. I asked him what is the price of a life? He didn't answer. About the clinical software, Resmed or Sandman or any other we use, he said they cannot tell you if you are having centrals because they can't have you hooked up to an EEG.

He doesn't want to discuss anything to do with the centrals because he doesn't think the software is capable of giving proper data. I told him the the software is the same clinical software that the dme uses to record compliance and summary data to give to him when a patient is having problems. If it isn't any good at recording proper results, why do they use it to monitor patients?

He just wanted to talk about my plms (periodic leg movements) being my reason for extreme sleepiness and headaches etc. The up and down nature of my AHI according to him... is probably due to leaking mask. Up and down was happening with very low pressures when mask didn't leak at all. At higher pressures there was a little leaking which I immediately attended to. The leak readings were not high and even the few that were... didn't seem to change the nature of the results.

He told me that too much knowledge can confuse a person and that is his area of expertise and I should just let him do his job since he had 20 years of education and is still learning. I had brought in my sleep lab reports which showed only 2 apneas and a a few apopneas in the initial study and then showed 8 apnea and 52 apopneas on the cpap titration study. I brought up the fact that those two results plus the first month results and continuing on, show I am just getting worse rather than better. I wanted to know why, and this was the reason I began self titrating to try to get the apneas down. It didn't work. Now I am showing centrals on the new sandman software. Were they there on the Rescan software? I don't know, as it doesn't detect centrals.

The doctor's answer was that my apneas and hypopneas were all over the place because I may have the wrong mask. He will not accept that I am having centrals because he doesn't believe that any of the clincal software is reliable for detecting centrals.

I was getting frustrated that he was not listening to my concerns, even though I told him this scares me and I want to have this treated with the right type of machine and not made worse by the wrong machine. He just keep going back to the PLMS. I got up and told him that I'm finished I won't ever be back. I left the brown envelope with the data and sleep lab studies on the chair and walked out. He called out for me to not leave my "garbage on the chair". I didn't go back and I will never go back.

From now on I will just have my family doctor have my heart and lungs checked out and I will continue on my own and if the centrals don't go away I may have to go deeper in debt to get a vpap machine.

I think this doctor likes patients to be in the dark and not get too much information. I was better off before the sleep study titration. I think maybe a lot of people who don't bother, may actually be the smart ones. They say 15% of people with sleep apnea have mixed apnea. Most of these people don't find this out until after cpap therapy has made them worse. I know it doesn't make everyone worse and actually helps many. But if you are in the 15% you should be on a vpap. Maybe this is why so many quit therapy. They aren't taken seriously, even with evidence.

I guess I needed to vent.


I read of some others on this forum who began on cpap and it took over a year and ahalf before it was discovered that they had mixed apnea. It shouldn't take this long. How much damage can be done in that time, to our health and our brain? This is not right.


Anne

[Snoredog]

I'm a little confused, you mention you had Sandman reports showing centrals then you show a Resmed S8 in your profile?

Which is it that you have?

You would have to have a Sandman Auto and the Sandman reports to get that information. No other machine I know of other than the 420e can provide that.

As for your doctor? well you are wasting your time trying to educated them, when they claim to be an expert you know you got problems. Telling you the machine is incapable of reporting Central Apnea is not correct. Fact is the Sandman Auto or the 420e can easily detect and report central apnea and do so very accurately. They detect them by listening for cardiac oscillations heard through the open airway. These machines AVOID any response to central apnea, in addition should the Central Apnea be one of the 40% that appear without an open airway, the machine will fall back on the "Command on Apnea" maximum pressure setting before responding. By default that maximum pressure is 10 cm, which means if you are at or over 10 cm pressure the machine won't respond to an apnea.

Sorry, but your expert doctor doesn't know very much about machines and it does no good to argue the point with them.

I suggest:

-you identify the machine you are using, if it is a Sandman Auto or a 420e you can adjust parameters on these to lower the frequency of the centrals seen.

If you have the Sandman software, look for the 96-hour "Detailed" report and if you can print that screen to a PDF document and post it here, we can tell you what to adjust to avoid the centrals.

Don't worry about the centrals, if you use the right machine it can easily avoid them. The two mentioned can do just that. You only need a $5.5k machine if you have periodic breathing or CSDB. Did your doctor say you had either of those?

Hopefully that expert gave you a copy of your PSG results that came from the Sleep lab? If not call the Sleep Lab directly and obtain a copy of it, then read it carefully, look for "CA" or "MA" mentioned on your report findings, also look for PLM and RLS. All this info and more should be on that report. IF the sleep lab gives you any flack tell them you want a copy to take it to another doctor for a 2nd opinion.

[One Tired Puppy]

I'm a little confused, you mention you had Sandman reports showing centrals then you show a Resmed S8 in your profile?

Which is it that you have?

I had the ResMed Elite 8 from May till just recently and was using ResScan software for the reports. I just recently got the sandman and have been using the sandman therapy software. The ResScan software doesn't detect central hypopneas or cardiac oscillations which I believe are central apneas. However, the ResScan software does tell you how long an apnea lasts[/color].

I had previously sent detailed reports of all sessions so the doctor could see the up and down nature of the apneas and hypoopneas and see that they are not getting better but instead have gotten worse right from the day I began cpap. When I went to see him I brought in 6 days of Sandman therapy reports that showed how many apnea, CA (cardiac oscillations), hypopneas, central hypopneas, etc., I was having. I was concerned regarding the CA's and the central hypopneas. The central AHI is a little higher than the regular AHI.

You would have to have a Sandman Auto and the Sandman reports to get that information. No other machine I know of other than the 420e can provide that.

As for your doctor? well you are wasting your time trying to educated them, when they claim to be an expert you know you got problems. Telling you the machine is incapable of reporting Central Apnea is not correct. Fact is the Sandman Auto or the 420e can easily detect and report central apnea and do so very accurately. They detect them by listening for cardiac oscillations heard through the open airway. These machines AVOID any response to central apnea, in addition should the Central Apnea be one of the 40% that appear without an open airway, the machine will fall back on the "Command on Apnea" maximum pressure setting before responding. By default that maximum pressure is 10 cm, which means if you are at or over 10 cm pressure the machine won't respond to an apnea.

Sorry, but your expert doctor doesn't know very much about machines and it does no good to argue the point with them.

This so called epert doctor, I have since learned, is a pyschiatrist! He seemed more concerned about the plms and supposedly leaky mask and asked me which dme I got my mask from. When I told him, down the street, he said I should have gotten it in this building then I would have had more choices and would have gotten the right one. I told him I think I do have the right one for me. It's a quattro pro full face mask as I have sinus issues and I find it it fine. He thought I should go downstairs and try different masks on loan for about 9-10 days each mask until I have tried about at least four different masks. He said he would see if they would let me do this without having to purchase them. I reminded him, my mask is fine. It's the centrals and the up and down nature of my readings which are worse than before I began therapy four months ago, that is bothering me and the reason why I came here. I had brought an article from a medical journal, Chest? can't remember which journal at this moment, that said 15% of pts are made worse by cpap therapy and develop centrals. These pts should not use cpap, apap, bpap but should be using a Vpap. I also brought an article from Chest Journal of cardiac oscillations and central apneas. I told him my concern was I am on the wrong type of machine and want to be on the right kind of machine that will deal with centrals as well as breathing problems. That's when he says, Those are over 6000.00. He isn't the one paying for them so why should that bother him unless there is no profit to him (in some way) because it isn't a cheap bottom line cpap?


I suggest:

-you identify the machine you are using, if it is a Sandman Auto or a 420e you can adjust parameters on these to lower the frequency of the centrals seen.

If you have the Sandman software, look for the 96-hour "Detailed" report and if you can print that screen to a PDF document and post it here, we can tell you what to adjust to avoid the centrals. How do I post a pdf to the site here?

Don't worry about the centrals, if you use the right machine it can easily avoid them. The two mentioned can do just that. You only need a $5.5k machine if you have periodic breathing or CSDB. Did your doctor say you had either of those?

Hopefully that expert gave you a copy of your PSG results that came from the Sleep lab?
I got my reports from the sleep lab and brought them in to show him as proof, that my initial and my cpap titration studies were extremely mild (the girl from the dme told me I was severe). She was looking at the first month reports. I think I am moderate now even though I was very mild in the beginning.

What is interesting is that doctor (psychiatrist) showed me another paper with something on it that said 100% for oxygen sats three times in a row and told me that was my oxygen report. Weird, as my sleep study showed an 86% and and 92% as well. It also showed something about an abnormal rhythm speeding up with my heart. He didn't mention these. He was set on getting back to the plms and masks. This is when I told him I am finished and walked out. He called out for me to take my "garbage" with me. That garbage was the Chest Journal articles, my sleep lab reports, and my sandman therapy printouts showing centrals and cardiac oscillations. I'm pretty certain I do have a copy on my cpu.

If not call the Sleep Lab directly and obtain a copy of it, then read it carefully, look for "CA" or "MA" mentioned on your report findings, also look for PLM and RLS. All this info and more should be on that report. IF the sleep lab gives you any flack tell them you want a copy to take it to another doctor for a 2nd opinion.

What is MA?

I will never go back to that lab again. My doctor sent me there because he had bad reports from patients regarding the one in my city. He said pts complained of, guess what? Lack of followup! I will see if I can somehow get to another city when the year is up.

Thank you Snoredog.
I have been late answering you as I forgot my password for this site and my email address was one that was on the yahoo site which had just been overhauled and I forgot my password there, too, so couldn't access my email. My memory is getting increasingly worse fast,and it is scarying me.Anne