Second Opinion Re xPAP Therary ????

Well, I really like my sleep doctor but he has confused me at times. At first he said he would have suggested a Bi-level, then he actually wrote bi-level on the copy of my sleep evaluation printout. But then he scripted a cpap w/C-Flex or EPR, then he mentioned an Auto, now he seems to be satisfied w/a straight CPAP pressure of 8.

I've asked him for a order change to an Auto, and specifically asked for the Resmed S8 Vantage since I already have the Humidaire 3i bought and paid for. My DME liked to have had a heart attack when I mentioned I might be switched to an Auto and tried to tell me my insurance (Medicare) wouldn't pay for an Auto (which we know is inaccurate). Since then my sleep doctor has avoided ordering the Vantage. I'm waiting for his final decision.

My sleep is terribly fragmented. Overall I feel better (finally) after a rough start w/xPAP therapy but this is still no way to exist, not well rested and running outta steam 2-4 PM most days again yet up and down all night. I'll be starting my sixth month of xPAP therapy in a few days. My sleep doctor is satisfied w/my current situation and I'm not scheduled to see him for six months now.

I'm seriously considering a second opinion. What I'm wondering about is just how to handle the situation when I approach a local university sleep lab. Ask for a new sleep study? New titration study? Just consultation & review of previous evaluation and titration studies as well as xPAP use data?

How would you approach this?

My evaluation study was in January 06, titration studies in September 06, compliant on xPAP since Oct 06, including a 3 week loaner of an Auto in January 07 resulting in a change to my current pressure setting, addition of 2L of 02 w/an increase to 3L of 02 in Feb and early March 07. (I have COPD as well as OSA).

Hi Slinky,

Your sleep doc has me confused!

Definitely get a second opinion - running out of steam in the afternoon and then up and down all night isn't the way it's supposed to be. I know because I'm going through the same thing.

I would call and ask for an appointment and specifically state you want a second opinion. I would then take all of my sleep study results along for the appointment or have them sent ahead of time.

This is pretty much what I did. I said "I want to see the doctor for a second opinion and possibly to change to him permanently." They scheduled me like a new patient in terms of the paperwork, questionnaire, and length of the appointment. He's now my sleep doc.

It was the best thing I could have done. I hope the same for you.

Sandy

P.S. I see you're in Michigan. If you go to U of M or Michigan State I would love to hear about your experience. My parents are kind of in the area and both need sleep studies. They're close enough to both and are willing to drive for a good doc.

Will do if I do, SleepySandy. I hadn't even thought of MSU even tho they are an hour closer for me! I'd seen U of M posting for clinical trials so just autmatically assumed they'd be the ones to contact. I'm going to check out MSU to see if they have a sleep clinic. I know they have a school of Osteopathic medicine and DOs were always my preference for years.

Sounds to me like your DME and doctor are in financial cohoots with each other.

if you don't sleep from point A to point B uninterrupted (inc. bathroom breaks) for 7-10 hours that is probably why you are sleepy during the day).

If you can get 10hrs of sleep per day, go for it. The more sleep you can get the better.

Will a different machine make a difference? Sure, but it all depends on what your PSG showed and what your AHI currently is and how the pressure is addressing it.

My opinion the Resmed auto is not the ideal machine to have if you have certain SDB characteristics. If you do well on a straight cpap then you will probably do just as well on a Resmed Auto. Will you do any better with the Auto? I doubt it.

If you have the Resmed cpap that displays AHI from the LCD you can do everything the Auto can with manual titration. A higher AHI is not the only thing that contributes to EDS.

Don't know who to attribute this quote to, but it seems appropriate -

Good, better, best.
Never let it rest
Until your good is better
And your better is your best.

If your goal is to be the best you can be, but the doctor's goal is to get you feeling better enough to get by, there is a core difference that will (and should) keep you wondering if there's more to life than this. A fresh set of eyes or a different perspective can be helpful if you believe your treatment has not reached optimum effectiveness for your medical condition. What would your doctor say if you asked if this is the most you should ever expect of your treatment? How revealing their answer could be!

Kathy

Thanks, SnoreDog. I'm aware an Auto isn't necessarily the answer. He just had me confused first saying a bi-level, then saying a Auto, then being satisfied w/a straight CPAP and turning me loose for the next six months given the sleep fragmentation despite decent stats.

I appreciated the pressure range recommendations in my other post. But the pressure range suggested can't be done w/the Resmed S8 Elite. I asked about the Vantage simply because it I already have the Resmed Humidaire 3i.

Actually, tho, would you suggest setting my Elite's pressure at 11 with EPR of 3? That would be close to a Resmed Auto range of 8-11 cms?

The first 65 days from starting CPAP therapy until the 3 week Auto loaner my AHI had averaged 11.5, AI 04 and HI 11.0

The first 32 days after the pressure changed based on the Auto loaner my AHI was 17.5, AI 0.8 and AHI 16.1. The next 28 days my AHI averaged 9.2, AI 0.3 and HI 8.4

My AHI has averaged 8.1, since our "final" adjustment (18 nights), w/AI of 0.1 and HI of 7.9.

The thing is the sleep fragmentation has gotten progressivley worse and the need for naps increased dramatically instead of the reverse since starting CPAP therapy and I do feel I've been abandoned in mid-stream w/a canoe w/one heck of a leak in it and no paddle or pail to bail with.

So instead of a second opinion do you suggest I just adjust pressures once a week until I find what pressure DOES work?

Thanks, KTeague. I love the little ditty you included!!! So if I do opt for a second opinion how would YOU go about it?

My AHI has averaged 8.1, since our "final" adjustment (18 nights), w/AI of 0.1 and HI of 7.9.

You are only 2.9 events per hour above what is considered normal. Sometimes you cannot get rid of those HI's. Resmed machines always score HI's higher than other machines. Your OA is 0.1, that means you only had 1 of those for the night.

Getting your AHI down is only one aspect of getting rid of the daytime fatigue. Why are we tired during the day? Because we don't get the sleep we need at night for what ever reason. What are the reasons?

Arousals. Arousals are interruptions that effect your sleep. An arousal can be from a SDB event like Flow limitation, Hypopnea, Apnea etc., but once you address all of those, you can still have "arousals" that effect your sleep.

Muscle-Skeletal pains can cause an arousal, so can side effects of medications. These may be seen on your PSG EEG as spontaneous arousals, they know what the apnea does because they can correlate those to the EEG event, that is pretty easy. The sensors attached to your leg can also show RLS or PLMD, so they know those arousals correlate with leg movement so they can see those. But for the others, your guess is as good as theirs.

The point is, once you get your AHI down to acceptable levels with the machine, you need to work on the other aspects that may contribute to the daytime fatigue. That means looking at any medications you may be taking, other disorders seen on your PSG like the leg movements. For example, chronic back pain can contribute to arousals which can impact your sleep. It is only when you address the chronic back pain will those arousals associated subside.

When was the last time your PSG lab tech sat down and said: This is everything we see interrupting your sleep? That is what is wrong with Sleep medicine, they are not allowed to do that, results of the test have to be delivered by a licensed doctor. So unless you get a good complete copy of your PSG results you are relying on your doctor to give you every detail seen.

So now you get your AHI down to 5 and your doctor has no clue. It is only later when you finally get that copy do you realize you have other issues seen on the PSG never addressed by the doctor. I bet you half the doctors in this profession have no idea what those items mean on your PSG much less go about fixing them.

Slinky,

I like SleepySandy's approach of calling it a second opinion with possibility of changing doctors and being set up as a new patient workup. Not sure what insurance constraints there may be as to time and procedures allowed for different visit types. I've known several people who ended up with their second opinion doctor.

I would be up front with the second doc and let them know you've expected results that you're not seeing, and ask them if they feel your expectations are reasonable. This will let them know right off that you're not there to get them to rubber stamp the first doc's handling of the case.

Just due to recent experience, I'm in tune with utilizing a doctor who is part of a bigger picture, as in a teaching or research facility, when a case gets complex with no solutions. I am not saying this to stereotype, just that I prefer that the challenges of my case offer an opportunity to serve another purpose. Does that increase the odds of more eyes seeing it? I don't know. I may even say, "I chose to come here because with this being a teaching facility, I am hopeful that the complexities of my case will be embraced as an opportunity and a welcome challenge."

Best wishes as you move forward. Keep us informed how it pans out for you. I just hit pay dirt when my neuro doc referred me to the Movement Disorders Center of the Neuroscience Institute at the local University Hospital. The doc asked my permission to share my case with "the world experts" in the field. He even emailed me at almost 10:00 PM that evening regarding something he needed from me. And, instead of offering me another pill, he told me he wanted me to take no meds for the limb movements until he knew exactly what we were treating. What a novel idea! He asked me to give him 2 weeks to go over my records and for consultations. The end results will tell the tale. I may still end up at square 1.

Good luck.
Kathy