There's a lot going on in my mind right now regarding my CPAP treatment.

I'm realizing the investment I had in believing my sleep doctor was excellent was really an investment in the appropriateness of my judgement and my trust.  I have not really asked him questions about my therapy, I tell him how I feel, he looks at the numbers and changes things, I see him again in 6 weeks or four months or anything in between.  In the meantime I watch my daily numbers and they vary widely, rarely do I meet the goal of less than 5 AIs, or AHIs an hour.  I haven't asked him why.  Why haven't I done that? (My numbers are 18/22, spont mode Resmed Vpap auto 25- lowest AI ever 1.7, usually 6 to 15))

Now I've gone through a hard period where I let my nose get so broken down (thin, bad skin) that I had to take 19 days off cpap to allow my nose to heal.  For the past week I've been using a new FitLife total face mask and having trouble with it because to keep leaks down I have to sleep on my back, and I haven't consistently been able to do that.  I'll call his tech on Monday to ask for help (I tried slipping my old quattro on last night for an hour or so and could just feel my nose starting to hurt again).  I'm going to have to learn to deal with the FitLife mask, but maybe they can help me if I ask for help.

I'm also facing some Deep Brain Stimulation Surgery for Essential Tremor and I'm told that many people find it hard to wear their CPAP for several weeks after the surgery- it involves two different surgeries two weeks apart which affect the part of my head where the mask straps down and I'm told the straps can be very uncomfortable as well as inhibit healing.  My surgery was scheduled for yesterday, but was postponed and I won't know until  mon or tues when we will reschedule.

So I wonder, do I go ahead and call my sleep doctor Monday, or wait until everything has calmed down, I've had the surgery and I'm back on my CPAP regularly?  But I've learned better than to wait on things that I have no idea when they will happen- so I think "call the sleep doc".  Then I've also learned to try and be patient and accumulate enough data for the sleep doc (or psychiatrist, or anyone) to actually have some idea about how to help me.

I guess I feel somewhat foolish.  I've wanted to believe I'm handling my OSA appropriately, but it's become apparent I'm not.  I feel like I've spent nearly two years spinning my wheels, moving from appoinment to appointment wanting to believe I've asked the questions and understand the process when I haven't.  

My regular sleep appointment is at the end of April, he said he would do another sleep study then and a MSLT for my continued daytime sleepiness (which is definitely worse now due to all the time off and the struggle with the new mask).  So there's yet another choice/decision- wait until the end of April, my surgery should be well over by then and I should have gotten in the swing with the new mask or call him Monday and ask for help  [At which time I do something good for myself- after the sleep study I see an ENT for evaluation (and can also ask the sleep doc why he doesn't recommend that I see and ENT, not for a cure, but just to be sure some surgery would not improve my numbers- Mike- thanks for that)].

So thanks for letting me go on and on- you're amazing if you could read the whole thing.

If anyone has any advice  it would be appreciated.  If this was one of you, I don't know what I'd say.

Again,

My thanks to all,

Mary Z.