How often to see the sleep doc?

[rubymom]

I went back to my sleep doc today for the first time since before my sleep study in April. He never gave me any specific instructions on when to return and I was able to score a new bi-pap machine just via telephone calls between my DME and the doc, so I wasn't in any big hurry to go back. I asked him today how often I should come in and he said a couple of times a year--but then asked me to come back in November. I'm wondering why I need to go back at all.

Well, actually I don't have the software yet. So he read my card and told me that my avg AHI was 5.2 and that my leaks were fairly high. He said he'd like to get me below 5 but when I asked how I could accomplish that, he gave me no suggestions. I asked him about controlling leaks and he gave me no suggestions there either. So my plan is within 6 months I'll have saved enough to get the software and will able to monitor my therapy myself. So why go back?

Don't get me wrong, he was very nice. I asked him to go over my sleep study in detail with me and he did and he gave me a copy. He went over the Encore Pro report quickly.

How often do you all see your sleep doc?

[Muse-Inc]

Pre-CPAP visit to determine if PSG was needed
1 wk after PSG to go over numbers and plan therapy
60 days later to report progress
6 mos later to report progress
6 mos (?) later to report progress

End of Jan 09 (not sure of the interval) I called to report drug side effects affecting my breathing & increased congestion with recent onset of really weird, paranoid nightmares, strange behaviors...pretty much my entire central nervous system he said as he read my 2-pg list of symptoms (primary thought I was just stressed...well, yeah, who wouldn't be). He noted everything carefully on the copy I gave him and we talked about how to deal with several esp troubling ones; I suggested followup in 3 mos for complete washout of drug and extent of recovery as that's what I'd read other people reported on 'net, he looked up drug (gotta love the Blackberry) but this was before side effects were being reported...he advised I pay close attn to symptoms & call immediately if they worsened. At this point, I'd lost about 45#s and I began having events...I was too clueless to know that, I thought they were cardiac (enter visits to cardiologist to ck out) or were just side effects that hadn't faded yet.

In June, I joined here, began reading like crazy, and realized I was having apneic events and not just side effects. I called and said I was having events at night, sleeping longer but was getting really tired again, and was sleepy in daytime. He suggested APAP loaner and recording oximeter in lieu of another PSG (I'd been laidoff and co-pay was not possible)...that was over July 4th wkend.

Jul 09 appt to go over numbers, re-set my CPAP to lower pressure, talk about new mask for lip leak. CPAP tech helped me figure out how to fit the Hybrid...for free ...my Optilife required no fitting except to make sure the pillows didn't fall outta my nose

Have appt for Nov to review all of this and see where I am. I like this doc; he listens..carefully...uses his brain for more than stuffing so his head doesn't implode.

[6PtStar]

I have never meet my Sleep Doc and that was almost 3 years ago. After the report my PCP wrote the Script for my machine. After 3 years even he does not ask how I am doing any more.

Jerry

[wrenn]

Saw mine for initial assessment and prescription only...... 3 years ago.

[JayC]

I am currently on a 6 month routine with my sleep doc. Just love the guy, the validation is great for me after 30 with no treatment nor support, plus I am clearly an interesting case to him....and he loves my improved numbers.

If I had much out of pocket for these appts, I might feel differently......at the moment, I don't have to ponder that. I learn something, he learns something, I get support and validation I needed and need......plus we make an affirmative decision to make changes or not, because we talk specifically about mechanics of daily treament and numbers (thanks to software and detail output!!)

J

[bdp522]

I've never seen a Sleep Doctor either. My Pcp ordered the tests and wrote the script. My pcp told me at the very beginning that if I wanted to make xpap work for me I'd have to look it up on the internet and figure it out myself. Lucky for me, I found cpaptalk.

Brenda

[Pugsy]

Let's see, first week in April saw the sleep doc's PA (referral from PCP) for quite a while to discuss sleep apnea and whether I had enough symptoms. Doctor flew in for 10 seconds to look up nose and in open mouth, I assume checking to see if there were physical blockages (tonsils, or nasal stuff). If he even said anything I don't remember it. He seems to leave all this to his PA. He is a pulmonologist and an accredited sleep doc and the head of apparently a well respected hospital based sleep facility about 40 miles from where I live.

I was very happy with the discussion I had with his PA. She was very patient and thorough.

Sleep study was done a couple weeks later. I did not meet initial criteria for a split study. A week after sleep study got a phone call from doc's nurse telling me what I already suspected but with a few details and tells me I will be getting a titration study. Another couple of weeks wait for that to be done and then I bought my own machine and started therapy.

A month into therapy got note from doc's office to call and schedule followup appointment to discuss all the goings on and bring machine. Found out machine request was only to check compliance for insurance. I explained purchased outside insurance, ok, no need for machine. Tells me that they don't want any sort of data.........
Oh well, I guess they have a new magic crystal ball... So no need for machine and no need for appointment within 60 days of starting treatment to check for compliance so I ended up with appointment at the satellite office, only 10 miles from where I live, with the PA on Aug 11.

Now to be fair, I could have pushed for appointment sooner (and driven further) and I would have if I had been having issues that I felt like I couldn't handle. I do have issues with overall sleep which I did discuss via phone with doc's office nurse and got a prescription. I already had verbal report from initial sleep study and the DME gave me a copy of my titration dictated results. I will get the other reports Aug 11.

So in all this charade. One initial visit and one follow up scheduled Aug 11. I am okay with it but only because with the help of friends here and my software, I was able to quickly sort out some issues impairing therapy results and implement a plan to work on them.

[BeanMeScot]

How often do you all see your sleep doc?

Never. He interpreted my sleep study but otherwise never met the man. Don't feel the need to ever meet one. My PCP can prescribe anything I need and I can interpret the data from my machine. Unless something changes, I don't see a need to see one.

[Paul56]

How often do you all see your sleep doc?

I don't have a sleep doc... so my answer is never.

I would like to have one that I could check in with once in a while who would advise me on my numbers and answer questions.

The sleep doc at the sleep study clinic refused to see me... because I live in a different province from where the sleep study took place and he would need to fill out extra paperwork to get paid for my visit.

Funny that, because my family doctor is also in another province and has no issue with doing the extra paperwork. In fact, he has me fill part of it out with each visit.

Interesting how certain patients can just go from the sleep study straight to the DME with no appointment with the sleep doc... yet others need to have that appointment before they can get equipment. To do it over again... I would have raised more of a fuss about it all.

I don't expect I'm missing much given his attitude.

[RipVanWinkleWannabe]

Didn't like my sleep doc at all. First time I went to him complaining that I was still sleepy during the day, he basically said "it's not sleep apnea, we've got you on CPAP for that, here, take Provigil." That was 3 years ago. Haven't been back since.