After your initial diagnosis did you get to meet w/a Dr.?

[chunkyfrog]

I never saw a sleep doctor until nearly a YEAR after my first diagnosis, and cpap use for a little less.
I only see one once a year to keep the Medicare teat flowing. Paying my premiums is not quite enough.

[SoCal Guy]

IMO, you can get much more help from the members here who are way more knowledgeable about Cpap therapy than doctors appear to be. I agree with Julie that they may know about the science of apnea but not so much about how to go forward with it to achieve the desired results. Of course, I'm speaking from my experience with my Doctor, who leaves me feeling like he just doesn't have many answers when it comes to fine tuning therapy to get results.

Awesome info, thank you. I wholeheartedly agree about getting the most/best advice from this site. I've already benefited from Jules advice to lower my humidity and learned so much from everyone and I'm still brand new. So...to all of you out there reading this, thank you!

I've had the same experience with an industry forum I've been on since 2009. I've received and continue to receive (and give) great advice to people in my industry. Way better than the actual industry help lines or sites.
As soon as I stumbled onto this site I kinda had a feeling I just got lucky and I was right.

Signed,

Grateful Newbie

[Cardsfan]

I was diagnosed by my PCP. He gave me a kit and I did an at home study for 3 nights. I followed the video in the kit and hooked myself up with 3 different sensors at bedtime. Returned the kit and about 2 weeks later got a diagnosis of sleep apnea. Then I was referred to the DME to get my machine. I never got an explanation of the details of my test. The people who read my test scores decided my pressure should be 5, they never saw me in person.
I found this forum pretty early into my treatment. I upped my pressure myself based on results with Sleepyhead, and what I learned here. The more you learn here, the more you can help yourself.
At my 6 month check up, my PCP asked if I used the cpap machine. That's it. He was surprised that I said yes, I use it every night. He didn't ask to see the data or even what my AHI was.
If left up to him, I'd still be at pressure of 5, instead of 11.
So my PCP knew enough to diagnose me, and order the machine. After that, it was up to me. Thank goodness for the help I got here.
After 1 yr, I made an appt. with a sleep specialist. He looked at my data, said I was doing great, and to come back in 1 yr.

[movingon]

SoCal Guy
I dealt with the VA in the SFO bay area. Your post of 1-12-17 asked 3 questions,from my experience this is what happened with me.
1. yes, sort of, very perfunctory, he explained nothing
2. yes, I haven't seen an MD since October.
3. no, the RCP whom I have met once is not too interested in what I have to say. There have been no classes and no suggestions of classes being available.
I'm reaching out to the good people in this forum for help in getting things straight.

[reolhlains]

- Did any of you meet with a Doctor specializing in sleep after initially being diagnosed?
- Is it normal to be well into CPAP therapy and never meet with a MD specializing in sleep?
- Did anyone go over your detailed, full sleep study with you or just give you a summary?

1. Yes, I suppose. I did the sleep study, the results went to the specialist Doc and I went to see him about a week or two later. First I met with his nurse, who explained the results, then I met with the specialist for his diagnosis (and some further checks). The specialist then referred me to a provider for treatment. I suspect as I am no longer being billed or paying the specialist, I am no longer a patient of his (although we have exchanged a few emails).
2. I have no intention of meeting with a Dr again, unless things change. The provider set me up and checked in with me regularly during the trial period. Now I am on my own and things aren't going so well, so I may need to reassess!
3. Yes, about 5 different people (and I have a full copy). Firstly the nurse, then the specialist, then the provider (on two different occasions with two different people) and then my GP.

Edit: actually seven people explained the results - the specialist changed providers shortly after and I spoke with them too! They were all indescribably helpful, patient and knowledgeable.

[Okie bipap]

I am about 20 months into my treatment and have never seen the sleep doctor who interpreted my sleep tests. I have seen a nurse practitioner who works with him four different times. First time was before my sleep tests, the second time was about a month and a half after I started my treatment when she verified I had been using my machine, twelve months later I saw her again to verify I was still using my machine, and again six months later for the same reason. I have never had anyone discuss my settings other than the technician who gave my my machine and mask. I took it on myself to take control of my therapy and have adjusted my pressure settings to where I am getting good results (AHI less than 2) and a pressure that is more comfortable than when I first started.

[Krelvin]

I never saw a sleep doctor the first time round. I went to a sleep clinic, had a split night sleep study where I slept about 3 hours solid during the second phase with a mask.

Was told where to get the machine (apria at the time) but I had read up before that visit so I had a good idea of what the machines were, masks and some of the baloney apria can pull, got my machine and never had a doctor go over my results. And started my cpap journey.

Second time round about 9yrs later, sleep doctor, another study which was very much like the first, got an RX for a machine, local DME that knew less than I did, got the new machine, one follow up with the sleep Dr who was more interested in compliance, fired him.

So no sleep doctor the first time, had one the second but despite the fact he was a cpap user himself all he cared about was compliance.

I use my machine every day, 6-8 hours a night or more, very effective, works for me.

[MrGrumpy]

I found sleep doctors nearly useless, except for giving me that formal diagnosis and saying, "yep, you have OSA and its mild to moderate with an AHI of X. Im sending an order over to the DME to get you your CPAP gear and mask issued, as well as sending you back to the sleep lab to get a titration study."

Beyond that and giving me encouragement advice to "try to lose weight if possible," Ive found sleep docs nearly useless. I did have ONE sleep doc who actually knew about the masks and machines and gave me a few real world practical pointers, but that was just one guy.

What really helped me back in the old days of my starting CPAP was having good offline equipment support at the local DME. Specifically, an RT who gave a shit and knew how to recognize I was mouth leaking/breathing and transition me from a nasal mask to a full face mask. And then to fit me for the right size of full face mask. That was absolutely critical.

Also critical was that titration study. I had a really good original titration study, that tech who did it was dead on correct.

I noticed a deterioration in the quality of sleep medicine when 1) I switched my insurance over to Aetna but I had no control over that and 2) after the economy collapsed in 2008. Especially by about 2009, I began noticing subtle changes in quality of services provided.

My best advice is to get set up properly in the beginning with good gear, the right mask and right mask size. Really, really critical in the beginning. And replace that gear when it wears out. You will learn stuff on your own past that, especially if you are willing to read the manuals and observe your response to CPAP over time.

Oh yeah another thing that helped me was once I was fully ON CPAP and things had leveled out, I found that if I lost significant weight that really made the CPAP therapy work like crazy. I had my titration study at a weight of 225. I lost weight and got down to 204 lbs and observed the pressure I was titrated at 225 made me feel GREAT at a weight of 204.

Another bit of advice I have is stay away from surgeries. I dont think there are good surgeries for sleep apnea. Maybe someday there will be. But right now, I dont believe it. There is a cottage industry out there where doctors are making money doing UPPPs, tonsillectomies, nasal surgery and other stuff for sleep apnea. I had my tonsills taken out after seven years of steady, successful CPAP use and the tonsillectomy completely monkey wrenched my whole entire CPAP therapy. Afterwards it was like, everything had changed. But I had my tonsils taken out for chronic tonsillitis, not for sleep apnea reasons, I really had no choice at that time I was cycling from one respiratory infection to another due to tonsillitis.

But the UPPP...man I was offered that this past year and I said, "no more surgery for me." If that failed, then auto titrating machines wont work right. Plus the UPPP just has a bad name as a surgery, lot of surgeons do it for money purely, I think UPPP should be outlawed as a sleep apnea treatment but thats just me. Nasal surgery, I wont have it although I have sinus problems. I just wont have it, although if I had the right surgeon and it was done right, it might really help me I dont know. But surgery for this stuff, dont believe the hype. The standard is properly titrated CPAP, the right kind of CPAP mask, a heated humidifier, weight loss and elimination of sedating drugs past 4 PM. Dental oral appliances are sneaking up behind CPAP as a treatment for mild OSA but not for severe OSA and I have no firsthand experience with oral appliances yet. They are FDA approved for mild to moderate OSA, however.

[Bunsen]

I was originally encouraged by my dentist to get checked for apnea. I asked my care provider (a physician assistant in a family care practice). She said sure, I'll set it up. I use a cpap for apnea myself. The sleep clinic my insurance used was in a resort hotel. Show up at 8pm, get prepped by the tech, go to bed. They woke me up around 6am, gave me a coupon for a free breakfast, told me to get dressed and they would be in touch. Called me to come back for titration. Same drill with the same tech. He told me my apnea was severe and they would have awakened me and titrated at the first visit, but the machine in my room wasn't working. Another free breakfast, and I came back in another week and saw a physician assistant who worked for the pulmonologist who owns the clinic. Got a copy of my sleep study, she had me look into my throat with a mirror and flashlight, then compare to her throat. No wonder I choked in my sleep! Sent off with my Rx to DME. I've been back to the clinic after 90 days and annually for 7 years. I have never met the pulmonologist or been seen by anyone but a PA. I pay a high copay like I'm seeing a specialist. I thought about complaining, because I do feel like it's a ripoff racket, but I got good equipment, I've adjusted well, it WORKS, and all an MD could do at this point is bless it or screw it up.