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When I asked about the sleep study results I meant with a tad more specificity. What was the AHI? The AHI will more or less tell you what your treatment options are.
Never saw a CPAP related case of numbness. What type docs did your son see? Specialists? Neurologists? Rheumatologists? Cardiologists?
This thread was 3 years old and doubt the OP looks in very often.
What I mean is that the scores, like mask seal, are just numbers. The mask leak number is relevant but should not be a concern if AHI is low... by low I mean less than 5 events per hour and even that is not great. They take ONE point off if you remove your mask and then put it on. If you did this 5 times during the night I guess you would drop 5 points but sleeping 6 hours solid with no mask offs gets you a much less number of points. The results are worth thinking about in order you can self direct therapy but a high ResMed score isn't worth as much. You will get a great number of points if your AHI is over 5 and you sleep 10 hours compared to six hours of sound sleep with no AHI events. Getting your AHI down to near zero is the goal.
Are you saying you take the mask off while sleeping and are not sure why or what to do about this issue? What were the results of your sleep study(s)?
There are a number of factors to be looked at with mask fit. First, it depends on what type mask you use. If you have a full face mask and the cushion is the wrong size, this can be a bit of a problem. Some mask types tend to leak a bit. I started therapy using a Simplus which is a full face mask that fits over my mouth and nose and it took awhile to figure out they started me on the wrong size cushion. I learned to mitigate leaks that bled air into my eyes by using mask cushions. Once I started using a smaller cushion, the leaks were less but the mask still bled a bit of air into my eyes and I used mask pads which are essentially pieces of tee shirt material that are shaped the same as the cushion and sit between it and your skin. They are cut out just in the area that contacts your face. I also found that my jaw slackened during the night and dropped a bit and the mask lower side ended up in my mouth and leak rates were really high as a result. I began using a "boil and bite" mouth guard (still use it) which prevents my jaw from going slack.
This tamed my leak rates to a fairly acceptable number. I switched to an Amara View mask and after figuring out how to wear this mask on many nights have NO leaks. This process took a few years and some experimentation. Doesn't do much good to try and follow what others have done as the mask fit issue is kind of a personal one and what works for one person may not work for another. Good luck!
If your AHI is 1 to 2, you are good! Mask leaks will come down as you figure out best fitting size and adjustment issues. Your ResMed scores are more or less not all that useful.
Good point on the length of compliance monitoring. Most private insurance and Medicare monitor compliance for one year as the machine is a sort of a 12 month rent to own type affair with the insurance company. After that, the machine basically becomes yours. Probably isn't much to be gained by Medicare, an insurance company or even a DME in trying to sell USED PAP machines.
I did go their page and saw a picture of a mask in a SoClean tub and didn't see the part about a whole machine. I have never cleaned my actual ResMed Aircurve 10 so I am guessing it doesn't hurt to not clean it. Perhaps others have had different experience?
You are obviously a ResMed equipment user and monitor using the myAir online tool. That is fine for simple issues like mask leaks and AHI but you may want to use a more advance suite of monitoring software. ResMed sells one for clinical use (can't recall name) and you can download a free copy of Sleepyhead software which requires an SD card reader (very inexpensive) and provides more detailed information if you think that might help. Glad to hear you have a concerned MD and a good DME... from comments and personal experience, this is kind of rare!
Three ways to keep your mouth closed by using an outside means... some folks tape, some folks use a purpose-made band and I personally use a boil & bite mouth guard. Your mouth opens when your jaw relaxes while asleep and any of these methods can be made to work. Good luck!
The ResMed VPAP machine you have is more or less similar in conformation to a ResMed S series (like S9) or perhaps a 10 series and I can't see how you can clean one of these things using a SoClean. I thought those gizmos were for cleaning masks? In any case, I clean my mask daily using mild unscented hand soap from a pump and towel dry then let it air dry. Never saw much need for a SoClean as I have not gotten sick from my own mask in the years I have been using various masks.
Wow... great support from the doc! Since I am not a medical professional but have heard that a Bipap is the machine of choice with central apneas and OSA. Not sure why the Resmed daily report card shows your mask off more than you expect but you can turn the automatic on/off (breathing triggered) function and rely on the switch atop the machine to turn the thing on and off. I would turn the automatic off to ensure your breathing patterns don't affect that facet of the machine's function.
I use an Amara View which is considered a full face mask but its upper part fits up to the bottom of your nose and there is nothing covering your nose otherwise and the lower part of the mask is just below your lower lip. I find this mask pretty comfortable. Only thing I am not keep for is the rear part of the head gear and had my wife make a small 4" pad to cover it else it kind of chaffs my neck.
Something is going on besides rain out. If you can soak your head taking your mask off I suspect it is time to call your DME and explain the PROBLEM. There may be some flaw in the controls that is causing this. I would think your tank would be dry pretty darn fast if you had this much water in the tubing. I think this thread has gone over all common reasons for having rain out in tubing and your example goes well beyond anything in my experience or I have heard of. Just for grins, turn off humidity and heat for a night and see if the issue persists. If it does, the equipment may be faulty in some fashion. You might also drain the tank when you do this. I don't use heat and humidity personally as it makes no difference to me as far as comfort goes so each person is sensitive to heat/humidity differently I am guessing.
If this turns out to be a faulty machine I'm going to be 3 for 3 here with my CPAPs. First one was blowing excessively high pressure levels (attempted use for a month before bringing it in to find out it was a dud), 2nd one I used for about 10 months it sat on a shelf for over a year then when I went back to it, after 1 week the pressures were all over the place and hitting me with sudden bursts so intense I couldn't breath and the humidifier appeared to stop working entirely because literally no water was being used at all even after 9+ hours of use.
I agree from everything I'm reading it seems really bizarre to have such an excessive amount of water, but I thought maybe I was doing something wrong.
I'll call them today. Thanks!
No way to answer. Each insurer has different standards; that I am probably pretty sure. I guess the DME is tasked with either seeing that compliance is met or acts as intermediary for the insurance company. I used to be under Humana so I googled for Humana:
Does Humana require compliance / adherence for CPAP therapy?
Yes. Humana requires adherence and will only cover a medically necessary PAP device beyond the first three months of therapy when PAP use is greater than or equal to 4 hours per night on 70% of nights during a consecutive 30 day period during the first three months of therapy.
Found this info on a 3rd party site as I couldn't find it easily on Humana's website. Your insurance provider may be different. You might also call the DME and ask them as well.
I agree that the points you receive are not actutally metrics but may be there as a guidepost. If you stop breathing 14 times and hour while asleep, this is NOT good. It isn't as bad as 15 times per hour but the long view on this is that your breathing stops and oxygen levels may be tanking. PAP therapy is intended to keep your airway open so best figure out what you can do to get that number down to a zero AHI. Have you talked with your doctor about WHY the AHI is so high? I suspect your prescription may need tweeked.
Funny, after all the detail, the sleep study results were missing; AHI and SPO2? You appear to be a chronic worrier and a machine can't cure that. No word about WHY a mask doesn't allow you to go to sleep even though you say you are not claustrophobic and seem to breathe better. Some root cause analysis of your issue seems to indicate almost all the information needed to take a stab at a reason is missing. Not being critical, just need some actual pertinent facts to be able to make any sort of assessment. You went to a Stanford clinic and two docs examined you but they had nothing to say? They were stumped? Odd.
Prior to going on Medicare, I was with Apria as they were in my private insurance network. They didn't win the bid for Medicare in my area so I had to find another company that I am pretty satisfied with. Since you bought your own machine, compliance isn't an issue; guess it would be the supplies that require a compliance check. I would call the insurance company and talk with them about how to prove compliance. Good luck with the sleepyhead!
If you live in the US, you can look at data online:
If memory serves, you have to sign up but once signed up, the machine sends the data to ResMed and they put in on this website. If you want to look at data from your card, you will have to get a reader or your PC/Laptop will need to have the ability to read the card. You will need to download some software like 3rd party free software called SLEEPYHEAD. I don't use it as the ResMed info is enough for me. Good luck.