Patient in the Driver's Seat

[lwieland11]

I went for a checkup with my sleep doc today. Here's how it went(venting):

9:30 - I arrive for a 9:40 appt. with sleep doc. I made this appointment a couple of months ago. I finally get to sit down with the doctor.
10:10 - I tell the receptionist that my appt. was at 9:40 and I don't have much longer to wait. She calls the nurse. Nurse says doc is busy seeing new patients. Huh? I'm thinking shouldn't the new patients be waiting while the established patients are being seen? Just my opinion.
10:30 - I get called back. Nurse gets the vitals and any new information. Tells me that I'll be seeing the nurse practitioner today, not the doctor. I like the NP, she's smart, compassionate but new to sleep medicine. I'm a complicated case. I need to see the doctor. I'm thinking that the doctor is seeing new patients/developing new business, which usually includes a prescription for their very expensive sleep study. Ah, I understand now. She's focusing on the lucrative patients and letting the NP handle the existing ones.
10:45 - Nurse practitioner walks in. Gracious but never apologizes for being an hour late. Really? Just because I'm a patient does that mean my schedule is less important than yours? I have things to do!
10:50 - NP shows me my "download" since I've been using the BIPAP. The numbers look good, almost under 5, much improved over the original AHI, which was scary it was so high. I am happy about that. The BIPAP is working. But I don't feel rested or look good. Something is still not quite right. She, like so many sleep professionals before her, suggested a chinstrap to keep my mouth shut. They don't work for me I told her. I open my mouth anyway. I have a headstrap, which she had never seen before, and I told her that it works but wearing it is impossible. My head literally feels like it's going to explode. Extremely uncomfortable. So, she said with a full face mask you should be able to sleep with your mouth open without a problem. I don't think that's the case. I told her that some people actually tape their mouths shut. She was horrified by that. Don't think she or the doctor realize how desperate patients become. So, she understood that something was still not quite right but she had no more ideas. I'm thinking why am I here. She said I had 90 days to fully comply with the requirements of BCBS. That was a relief. The DME told me 30 days. Not sure why. Perhaps to get paid a little quicker? I really don't know but I don't trust those guys at all. The NP said to come back in a month on the day that the respiratory therapist can work with me and mask, my sleep position, etc. I'm thinking why can't we do that tomorrow? Isn't that what the DME is supposed to do? Seems like waiting another month to tweak things is too long, especially if it affects compliance. Now is when that needs to occur. I don't want to keep going in for office visits when I don't really get any new info, you know? They get paid, I get nowhere. Sorry for the vent. Just feeling so frustrated.

[Julie]

Have you tried a soft cervical collar?

[lwieland11]

No, I haven't. What does it do?

[Pugsy]

Cervical collar helps some people by keeping the neck and head in a position that can help open the airway up.
It can be useful for people with obstructive sleep apnea but people with central sleep apnea it may not help much because with centrals the airway is already open and the problem isn't the airway tissues collapsing and closing off the airway which would be obstructive sleep apnea.
With centrals your brain isn't sending the signals to breathe even though the airway is open.

Now it could possibly help someone with both obstructive sleep apnea and central sleep apnea but it would be the obstructive part that it would help..if it helps.

If I remember right you have both obstructive sleep apnea and central sleep apnea. If this is correct it would be worth trying a cervical collar to see if it helped the obstructive apneas.
If you used auto adjusting pressures you might be able to use less pressure for the obstructive stuff but your machine doesn't do auto adjusting pressures.
I think it is worth trying to see if it will bring that AHI down a little at your existing pressures. Depending what that AHI is made up of I think it is likely mostly obstructive.

Worth trying...won't hurt anything and soft cervical collars are relatively inexpensive. WalMart has some.
Make sure you don't get one too wide though because it won't be comfortable and if you aren't comfortable it's difficult to sleep.

Oh..as to why the DME told you 30 days instead of 90...to put the fear of God in you so you wouldn't keep putting it off and it's very possible that it also means they get their money sooner. I don't know how your insurance pays but if it is rent to own....it's a monthly rental and not a huge lump sum payment so they get the same amount each month anyway. Now if your insurance paid a big lump sum once compliance had been met...yeah maybe but I think you said you are on a monthly rent to own program. If that is the case I don't think they fibbed to you to get paid sooner. I think just to put the fear of God in you so you work hard on compliance.

[lwieland11]

I do have both types of apneas. According to the second sleep study data, the BIPAP at 17 is taking care of all the centrals. So, it's the OSAs that still need to be addressed in part. We need to get the AHI down just a little bit more. They are not upping the pressure at this time. So maybe the cervical collar is worth a try.

You guys have more information than the doctors!!

[Guest]

I'm a complicated case. I need to see the doctor. I'm thinking that the doctor is seeing new patients/developing new business, which usually includes a prescription for their very expensive sleep study. Ah, I understand now. She's focusing on the lucrative patients and letting the NP handle the existing ones.

Is the DME in the same bldg as the doc? Or does the doc own the DME? If so, you need to run.

Normally, the new patients always, always see the nurse or PA but never the doc.

Compliance normally has to be completed in 30 consecutive days but you have up to 90 days to complete that or the doc has to request an extention. So this can easily be misunderstood or twisted.

Personally, I would not wait another 30 days for

The NP said to come back in a month on the day that the respiratory therapist can work with me and mask, my sleep position, etc. I'm thinking why can't we do that tomorrow?

but this likely has to do with the next time they can bill the insurance again.

You should be able to request a mask fitting at the sleep lab or DME tho IMO sleep labs are much better at this and only profit from the fitting and not the mask sales. Some will gift you a mask to take home as they do get samples.

[Hang Fire]

So, she said with a full face mask you should be able to sleep with your mouth open without a problem. I don't think that's the case.

What do you think FFMs are for? They are for people whose mouth opens at times while sleeping.

The things you need to learn can be learned here. From the medical profession - not very likely. It's good if you learned a lesson in that doctor's office - they aren't going to help you much more than what they have already done. The best course is to quit your griping and start learning.

[mike1953]

So, she said with a full face mask you should be able to sleep with your mouth open without a problem. I don't think that's the case.

What do you think FFMs are for? They are for people whose mouth opens at times while sleeping.

The things you need to learn can be learned here. From the medical profession - not very likely. It's good if you learned a lesson in that doctor's office - they aren't going to help you much more than what they have already done. The best course is to quit your griping and start learning.

++++++++10 The best course is to quit your griping and start learning.

[Julie]

The collars help keep your jaw (if not lips) closed.

[chunkyfrog]

Chin up strips take the efficiency of tape, and remove most of the SCARY part.
Sometimes it is the only way I can cut the leaks. Gotta get busy and make some more . . .