"please keep me updated about oximeters "
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Venting on ups/downs, my lack of knowledge and defense of such of my CPAP treatment. Help.
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.
Views: 182
Replies to This Discussion
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Permalink Reply by Mike on
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Wow, Mary... you're so committed to this, that I feel I need to reach out to you personally and help in any way I can. Not that I have all the answers, but I've read what you wrote, and have some thoughts, and I'll share them here for what they're worth, also in the hope that others amplify or contradict my thoughts as they deem appropriate. I broke down your post into the 4 essential questions I spotted. So here it goes --
QUESTION 1: Rarely do I meet the goal of less than 5 AIs, or AHIs an hour. I haven't asked [my sleep doctor] why. Why haven't I done that?
I think you don't have confidence that he's able to help you. I don't think you believe he has the answers. I think you need to move on to a sleep doctor who is well recommended and passionate about his work. In other words, I think you're kind of on your own now. You have us. But I don't think you trust your doctor. That's a bad situation to be in. But not an uncommon one. Most of us are in that boat (myself included at this point).
QUESTION 2: 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.
I have spoken to other people who have had brain surgery and they have told me that they had some luck with the Respironics Comfort Lite 2 CPAP mask, which has unique headgear that sits on your head like a baseball cap. Here's a picture:
Another option might be the SleepWeaver CPAP Mask, which is all cloth and similarly has unique headgear. I haven't heard of anyone actually liking this one though, so be careful.... Here's a picture:
QUESTION 3: 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.
It's not your fault. Getting well with Sleep Apnea is a frustrating process. It almost seems as if there's more misinformation out there than valid information. Keep talking to people you trust on this forum and other forums, and we'll all work together to keep your doctors and other professional helpers honest.
QUESTION 4: 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
I'm not a big fan of running more and more sleep studies until a sleep doctor can prove to me that he/she is actually analyzing the data that comes off the machine. there is a crap load of data that is accessible right from the machine, yet the docs rarely take a look. mind-boggling. before doing another multi-thousand dollar test, i'd dig into the machine data. that said, if your doc is already doing that and feels a sleep study is warranted, i'd run not walk to get one.
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Permalink Reply by Mary Z on
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Thanks, Mike,
Mary
Mike said:Wow, Mary... you're so committed to this, that I feel I need to reach out to you personally and help in any way I can.
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Permalink Reply by Judy on
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I guess I would talk some turkey w/the surgeon and find out just where on my head the surgerical wounds will be. And I would talk some REAL TURKEY w/both the surgeon and the sleep doctor about coordinating the timing of PSG, surgery and recovery to best benefit you. I'd also sit down and talk some real turkey w/my local DME provider well-armed w/the information from the surgeon about various mask options.
There is a PAPCap I've seen mentioned at cpaptalk, a member there developed it if I remember correctly, and it may be that this PAPCap could be used to reduce any strap problems after surgery.
Spontaneous mode w/the VPAP Auto isn't always the most comfortable mode UNLESS the "comfort features" are adjusted to "fit" YOU and YOUR needs. I'd be inclined to give serious consideration to yet another titration, but THIS time done on Resmed equipment by or supervised by someone VERY EXPERIENCED w/Resmed equipment. For instance, my recent bi-level re-titration was scheduled at the convenience of our local Resmed Rep (who is also an RRT, RPSGT) and he was to observe and advise my sleep lab's RPSGT. Unfortunately, "I" blew it, didn't cooperate and didn't sleep phershtunga. If only I had that night to go over again I would take an Ambien!!! It never occurred to me that I wouldn't sleep enough - ONE sleep cycle at the beginning of the night w/ONE REM cycle. *sigh* Any way: if they use the Resmed titration system they can play with trigger, sensitivity and rise time options in the Spontaneous setting. I absolutely can NOT use the Spontaneous mode w/my VPAP Auto. The transition between inhalation and exhalation is just too abrupt. We were hoping we could get those "comfort settings" adjusted for me had I slept during the titration. *sigh* HOWEVER, we can and I DO successfully run my VPAP Auto as a straight bi-level in Auto mode by setting the Pressure Support the exact distance between IPAP and EPAP, i.e. IPAP 13, EPAP 8, PS 5. That allows the EasyBreathe technology to smooth the transitions and its wonderful. Of course, the other thing is .... we haven't found the IPAP and EPAP settings that work best for me yet either because I didn't sleep phershtunga during the titration. *sigh* A total waste of time and resources and insurance money because it didn't occur to me to take an Ambien to ENSURE that I SLEPT for the titration. Grrrrrrrr!! I've been so angry w/myself because of that!!!! My local Resmed Rep was so gracious to offer and to take the time - and I blew it!! I'm having a hard time forgiving myself for that.
As for the FitLife: get some Mack's Silicone Ear Plugs, roll one in the palms of your hands to form a rope or tape. Place that "tape" along the mask cushion where it meets your face either in the areas that tend to leak - or along the entire face outline if necessary. When laying on your side lay your face to the EDGE of your pillow so that the mask is OVER the edge rather than on the pillow.
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Will this short bit of data do? It's the average for 3/6- 3/12.
Spontaneous mode 18/22
AI 13.6, HI 17.5, AHI 31.1
Leaks 95 percentile 1.1 L/sec Max, 1.4 L/sec.
Last night:
AHI 24.1, AI 10.4
Leak 1.72 L/sec
Mary
Rock Hinkle said:Mary what are your numbers? Can you post your data for us?
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Permalink Reply by RockRpsgt on
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Do you know if your events are obstructive or central in nature? This is probably a question that you have answered before. Sometimes it is hard to keep track of everyones Dx and symptoms.
Mary Z said:Will this short bit of data do? It's the average for 3/6- 3/12.
Spontaneous mode 18/22
AI 13.6, HI 17.5, AHI 31.1
Leaks 95 percentile 1.1 L/sec Max, 1.4 L/sec.
Last night:
AHI 24.1, AI 10.4
Leak 1.72 L/sec
Mary
Rock Hinkle said:Mary what are your numbers? Can you post your data for us?
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Judy, thanks for the advice. I tried the macks last night- I thought with good results, but my leak was still bad this morning when I checked the numbers. I had put it around the whole edge, but my only realy problems are at the forehead. Tonight I'm going to just put the silicone at the forehead area and put it in a bit different place. Hanging my head over the side of the pillow might work better then.
I know pretty well, where my incisions will be. Two on top of the head and then when they put the battery in two weeks later they reopen the two on top of the head and tunnel down through the skin from the top of the head, behind the ear and out under the collarbone to attach the leads to the battery which is implanted under the collarbone.. The tunneling part is more invasive, or painful afterwards than the original placement of the electrodes. My information about CPAP users having trouble with the straps comes from a Nurse Practioner who works for Medtronics (the manufacturers of the hardware) and what CPAP users have told her.
If I were able to get my IPAP/EPAP down I would be more versatile in the kind of the mask I can use. Right now the pressure is too high for nasal pillows, I'm a mouth breather (easily dealt with I know, well not so easily now, but maybe after I see the ENT I can get my nose unstuffed at night), and the bridge of my nose is off limits. At least now I have a better idea of what to pursue in what order.
My thanks to everyone who has responded.
Mary Z.
Oh yeah, Judy, sorry your sleep study with the rep there didn't go well. But who could have known ahead of time they weren't going to sleep?
Judy said:I guess I
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Yeah, I've been really bummed about that - but - on the bright side - I'm still in a whole lot better situation than you are, Mary Z. My best wishes, prayers and all that good stuff are w/you. I don't envy you all you have, are and will be going thru! (((hugs)))
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Permalink Reply by 99 on
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also can they not do the sleep and MLST at the same time as one study
Mary Z said:Thanks, Mike,
Mary
Mike said:Wow, Mary... you're so committed to this, that I feel I need to reach out to you personally and help in any way I can.
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also the technoligy is there for no wires
my electric toothbrush has no wires and is charged by induction, no wires involved
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99 part of the problem is her AHI being elevated. A higher AHI could cause excessive daytime sleepiness. This would cause a false positive on an MSLT.
Mary I feel for you. If there is anything that I can do to help please let me know. I have quite a bit of resources at my disposal.
99 said:also can they not do the sleep and MLST at the same time as one study
Mary Z said:Thanks, Mike,
Mary
Mike said:Wow, Mary... you're so committed to this, that I feel I need to reach out to you personally and help in any way I can.
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Mary, Can I ask you to be more specific as to "essential tremor"? What type of tremor is it. What is the name of the procedure you are having done. I am asking for my wife as she has taken an active interest in your case. Not sure why but she has no interest in spending more time on the puter than she already does. We do talk alot about the different cases that we see on the site.
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