New Dx, 4 sleep studies in 3 weeks, feel left hanging with questions

[happydreams]

SarcasticDave94 is right.  It is a battle.  And it's really you against them.  You need to stand up for what will work for you, not what benefits their stockholders.  It's a sad state of affairs, but you have to be your own advocate.  Your doctor won't do it.  Mine didn't.  Don't settle for second best, or what they had in the bargain bin, your health and well being depends on it.  Be assertive, show them the data including the ResMed protocol and tell them (your doctor too!) what is required.

[Gideon]

Ask your doc to get you an ASV titration THIS WEEK!!!
This is to be proof that ASV works for you. I would not accept any machine other than a ResMed ASV.
I strongly suspect that after a night or two of trials our advice will be to tell your doc that what you have is not working to the point that you are returning it.
A ResMed ASV should give you an AHI approaching zero.

[emmylouwho]

The doc wanted me to try the BiPAP ST for 2 weeks before going straight to the ASV. So I agreed. I’ve had it 2 nights and my AHI is 32.  They started me at 18/14 instead of maxing it out like in my titration study. 
I wonder if there’s or any point of continuing this for 2 weeks or do numbers come down after you adjust?

[SarcasticDave94]

I'd say if your treated AHI was 32, don't bother waiting too much. Tomorrow sounds like a good day for the phone call. Just tell them it's failed and we need to move on to ASV much sooner than later. ST has got to be uncomfortable, and you see yourself a poor therapy selection for you with that AHI rate.

[Sleeprider]

ASV will be the answer. I think bonjour has given you everything we have to point out the manufacturer intended use of the ST is pulmonary disease and hypoventilation. Only the ASV treats complex and central apnea, which is your problem. In addition, you want to insist on the Resmed Aircurve 10 ASV, not the Philips Respironics Dreamstation BiPAP Auto SV. Take some time to read the sections on ST and ASV in the Resmed Titration Protocol. This should give you enough information to present a good argument. https://www.resmed.com/us/dam/documents/...er_eng.pdf

[emmylouwho]

Thank you for the support and all the info. Will they make me do another study? I don’t think I can handle another. I’ve had 4. That’s enough.

[SarcasticDave94]

It would be helpful to create a list of symptoms and complaints. You can attempt to show OSCAR data if you choose to. I'd go with giving the doc a note about the things that are wrong on the current therapy with the info Sleeprider gave on ResMed data that the ASV is for treating CA, which you have in abundance as it sounds. They may require a sleep study with ASV mode tried. It could be a split study/titration. Make sure they set it up that ASV is definitely going to be tested. And I would highlight that ST was horrible.

PS given that doc has brought ASV to the table according to what you mention in post # 13, I don't think any more sleep studies will be required. Doc just has to be convinced the ST failed miserably.

[Sleeprider]

The only study that would make sense is to do ASV titration, however, it's quite easy to simply use an ASV machine in auto mode at default settings and obtain very good results. Many of our members have done so. You are using very high settings, and I would expect that with ASV it will be much much lower. Given your medical team's attitude and insistence on forcing ST on you, of course they will want another test.

Looking at your tests, I can't understand why you could not take these results to a competent doctor and get the prescription you need for ASV. The bilevel titration was a very simple pressure progression starting at 8/4 (IPAP/EPAP), and moved in 2-cm increments up to a pressure of 18/12. All events were hypopnea or central apnea. The best result was at 17/12, and CA events really increased when IPAP was raised to 18. Any professional looking at this would have identified a profile that is best treated by ASV, and instead they are claiming ST is somehow equal. It's not!

The ST will not work, and you should refuse it if you have any financial exposure at all. The titration study failed to show efficacy at any of the test conditions. CA events are inconsistent, and they will appear at any of the pressures being proposed. What will work is to put you on Auto ASV with a minimum EPAP pressure of 5.0, maximum EPAP of 15.0, minimum pressure support (PS) of 3.0 and maximum PS of 15.0 These settings can be fine-tuned very quickly however, they are likely to work well right out of the box. Medicare and most insurance requires that you have a trial on CPAP and bilevel and fail those before they will approve an ASV or ST. Technically the ST is in the same class of machine (bilevel respiratory assist device with backup rate) and uses the same insurance HCPCS code, E0472. In other words, it takes no more effort for the right machine to be approved at this point, as to force you to try and fail the wrong machine.

Take a look at the ST and ASV machines in the clinical titration guide I previously linked. You will quickly see the right machine and how easily you can be treated once you have it. https://www.resmed.com/us/dam/documents/...er_eng.pdf

[emmylouwho]

[attachment=28324][attachment=28325][attachment=28324]Thanks for the links.  The ASV does make the most sense.  This is such a learning curve and my head is spinning.  I downloaded OSCAR today.  I took a couple screenshots and will attach.  Thoughts?  I haven't had time to research what all of this data means but I did zoom in for a better view of flow rate.

[SarcasticDave94]

Some CA were mixed in with a lot of hypopnea, it helps to ID the events seeing the data. It sure seems like this is pretty poor therapy. It's gotta be uncomfortable. I do hope they get on this and get you the ASV soon.