My visit w/ dr. sorry if long post

[tigrpal]

Met with my sleep doctor yesterday for the 3rd time to give me the results of my titration study. First some background - My first study diagnosed me with an AHI of 9.3. I've had bouts of gasping for breath and scored 13 on the Epworth scale with loud snoring. Mild apnea but I wanted it to be treated. The choking for breath, even though it doesn't happen often, is very frightening to me. After my original study the dr. ordered a machine for me right away and I started using it at pressure 7. It's a cpap but it gives data. I've been using it faithfully every night for at least 7.5 hours except the two nights I was on an overnight trip with my class of 8th graders so my compliance has been excellent for 45 days now. My average AHI has been 1.7 according to Sleepyhead. I adapted to the nasal pillows after about 4 days.

My titration study was a waste of time and money. I had one event the entire night and the pressure never went above 4. I know that I don't always have apneac (is that a word?) events every night and this happened to be one of those nights.

My conversation with the dr. went like this(abridged):

DR: Well how's it going. It looks like from your data that things are going well. AHI is low, leaks are good. Having any trouble with the mask? How are you feeling?

ME: Well there are some good signs. I'm not snoring anymore. I feel like I've been getting more deep sleep having more dreams but I'm still having to go to the bathroom at night and I still sometimes feel tired during the day like this morning around 10 I could easily have taken a nap. Also, I've been downloading my data on to my computer everyday so I know what it says.

DR: (With a bit of a surprised look on his face) You must be good with computers. This is what we can do. We can leave your pressure at 7 or lower it to 4 or (now comes the fun part) I can give you a recommendation for an ENT. (My sleep dr. is a pulmanologist.)

ME: You mean for surgery?

DR: Well yes.

ME: I don't want surgery. I'd rather use the machine the rest of my life than have surgery.

DR: You may be a good candidate for surgery. Your BMI is good so you couldn't lose much weight and you have a low AHI.

We went back and forth a little bit on this and I finally said to give me the ENT's name and I'll think about.

I asked for and I received my sleep study reports and a copy of my prescription. He said he needs to see me again in 3 months.

I went home and set my machine on autoIQ(which I understand better thanks to a previous post). I set the pressure at a low of 5 and a high of 9. I needed to self titrate since my titration sleep study was useless. This morning my data showed my AHI for the night was 3.63. Acceptable but higher than ever since I started on cpap. Pressure had a max of 8.1.

I was surprised at how quickly my doctor recommended looking into surgery. It's only been a month and a half and while I'm not quite where I'd like to be there are positives with my treatment. I got the feeling he was looking for a cure to my condition and surgery would provide that. I'm leery of surgery.

I don't have any real questions. I just needed to share. Odd for me. I usually keep things to myself. Any advice would be appreciated. I think I'm on the right track. I'm not sure how long I will keep seeing this doctor. My insurance is renting so I may have to see him until that ends.

[Slinky]

You were doing much better at 7 cms of pressure straight CPAP. I would either go back to straight 7 cms or if you really want to see what the auto mode suggests as a pressure range or setting, reset the pressure range from 6 to 10 and see what results you get.

[-tim]

AHIs are general indicators but need to be read in context. Just like driving 55 can be good or bad if its in a school zone or a highway.

An increase in AHI isn't a bad thing if the event time are getting shorter.
If your having 45 second events once per hour, your AHI will be 1. If you change that to two 15 second ones, your AHI is now 2. It looks twice as bad but your breathing 33% more during your events.

The only way to be sure is to look at your data.

[Maxie]

It's good to share and your doctor's visit sounded a lot like mine. I'm wondering if some doctors feel threatened when CPAP patients know a lot about their own treatment and the doctor isn't the expert any longer. Maybe that is why your doctor got on a different subject that was more doctor oriented. Subconsciously he figured you weren't going to learn how to do surgery so he go on a topic he could "control." I make my appointments to see the RT now as I don't need the pulmonologist for other problems.

[Pugsy]

Don't forget...that AHI...look for the clear airway component too. If you have more of those..it might just be a fluke or you might just have had a few little minor sleep arousals due to changing pressure and thus maybe some sleep stage events.
Also look for any clusters. Sometimes a little cluster will elevate the overall AHI and give the appearance of an increased AHI when the rest of the night was really very minimal. Especially important if any clusters are present when you first are going to sleep or waking up. They might easily be explained with "awake" events.

The minimum pressure is the most critical.. I would set that closer to your previous cpap pressure...give the machine a little better head start and sometimes just a little more minimum pressure (when using APAP) makes a remarkable change.
Example...My AHI with 9 cm minimum was around 6...at 9.5 cm..it was around 4 and at 10 cm minimum pretty much always under 2.

[tigrpal]

P.S. Today my wife and I had a good look into each other's mouths. I look in hers and I see teeth, tonsils, uvula, its all right there. She looks in my mouth and sees nothing but tongue. Soft palate at the top and just barely the base of the uvula. Okay, I have a large tongue and a small mouth, I have scar tissue from biting my tongue, so that is probably why sleep dr. is thinking surgery. But removing part of my tongue seems drastic to me. I am real close to achieving what I need with cpap after a month and half. The risks of surgery aren't worth it. If I had a tumor on my tongue that would be different but cpap is simple and safe.

[chunkyfrog]

Can we say, "consultation fee"?
Maybe even, "kickback"?
Shame on the healer who only seeks to become well-heeled.

[Mary Z]

Hey, good work. Keeping track of your numbers, thinking for yourself about surgery (I'm like you- as long as CPAP is working I'll keep away from the knife). You can actually change doctors anytime you want. You are renting your machine from the durable medical equipment provider so it may be easier to stick with the same DME.
It takes some of us longer than others to feel better. A short afternoon nap is not necessarily a bad thing.
The only thing I have learned about CPAP that I'm sure about is there are two components to success. The first is good quality restful sleep. If you're not getting good sleep CPAP is only half successful. The second is to use the machine 100% of sleep time.
If you work on those two things and feel better in three months there is no need to keep that doctors appointment. If you are still not satisfied and can't get the help you need from the forum you may want to see that doc, or another of your choice.
I know reviewing sleep hygiene can be boring and seemingly a waste of time, but believe me, though good sleep hygiene requires discipline it will be worth reviewing and maybe changing some habits.

Don't worry about long posts. You weren't rambling and kept to your subject. Good luck.