Are Sleep-Docs Needed After Your Therapy Is Dialed-In?

[JayDee]

Now to start off, I am not advocating for folks to not seek the advice of their physicians. Go see your doc if you want to or need to. Docs are good people.

My insurance situation has changed to where I am now a "self-pay" patient. I have catastrophic coverage, but no coverage for CPAP equipment or sleep Dr's.

I did have insurance back when my sleep study was done and for my first follow-up appt. The cost for all that (just the doc & clinic fees) was about $1000 that they charged insurance. The new machine purchase, first mask and supplies through a DME charged insurance separately about $900. So, all in all, about $1900 to get me started with APAP therapy.

For the initial appt, doing the home sleep study and then afterwards when getting issued my equipment, I never met the doctor. Never laid eyes on him. His primary involvement (from my perspective) was a prescription to get an APAP set to the default 4 - 20 pressure range.

At the 90-day follow-up, I met the doc for he first time and all he did was read the follow-up questionnaire I filled out 15 minutes earlier. The main thing he did at the follow-up was ask me if I was feeling better and sleeping better. That was it. I honestly don't know what else he could/should have done and I'm not complaining, just relating the events. He wanted me to make another follow-up in 6 months and I have not made that appt. I don't think I'm going to make any more appts either, unless I see big changes for the worse that I can't understand or handle. He's a nice guy and I've nothing personal against him, I'm just cost-conscious and thinking the money he costs is better stashed away for a backup machine, a mask, supplies - whatever.

I stumbled across this forum right after I got the APAP because I was desperate to figure out how to change settings to get more air (like many, a starting pressure of 4 was suffocating to me). It is this forum (and not my Doc or DME) that gave me all of the info I needed to better understand the therapy and dial in my pressures accurately for my needs. With all sincerity and not exaggerating, neither the Dr, RT nor DME gave me any useable information to help with my therapy, other than the Rx for a machine set to the default pressure range.

Here's my point of view: Presuming I suspected sleep apnea issues and had stumbled across this forum first -- Had I known then what I know now (what I've learned from this forum), it is entirely plausible that I could have skipped the sleep study & the Dr appt and self-treated. I could have (without a prescription) bought a gently used APAP from second-wind and either a used mask from someone or new mask components. And I would have saved about $1k that was spent on the sleep-study and follow-up, which from my point of view, was only good for obtaining the initial Rx.

I cannot honestly say that the Rx was really worth $1k. A budget of $1k could have more than covered the cost of the machine, mask, supplies, hose cover, mask liner, mask wipes, one of those hose-hangers, etc, etc... I could have got the works and still come out ahead.

So, given my anecdotal experience -- now that I know I have non-complicated, run of the mill apnea issues and that I respond well to my self-managed APAP therapy -- I don't see a whole lot of value in seeing a sleep doc going forward from this point.

Presuming no significant changes for the worse, is there something I'm missing or not thinking about by going it on my own from this point without a Dr?

Thanks,
-JD

[LSAT]

Your doctor may have to wait an extra year before he buys his new Lexus.

[Pugsy]

now that I know I have non-complicated, run of the mill apnea issues and that I respond well to my self-managed APAP therapy -- I don't see a whole lot of value in seeing a sleep doc going forward from this point.

Presuming no significant changes for the worse, is there something I'm missing or not thinking about by going it on my own from this point without a Dr?

No. Not missing anything unless you run into some sort of trouble you can't handle.
Your story pretty much mimics my story. I got diagnosed in May 2009 and saw the sleep doc for my obligatory 90 face to face visit...well actually saw his PA and was told to call for another appointment in 6 months (their computer was down at the time)...and I never did and haven't seen him or his PA or even talked to them since Aug 2009.
I do have Medicare so I do occasionally get a mask or some other cpap item using a local DME but that's about the extent of it.
Most of my stuff I either get from cpap.com or Amazon or EBay depending on what I need and price.

Now I do see my PCP for my other stuff but I know more about cpap and sleep apnea than he does...and he is the first to admit it.

[bonjour]

There are home studies at a cost of $100 to around $300 that you could have used to verify that you have Apnea.
Without a sleep study the best we can conclude is that you are well treated at a pressure of 4. (that low pressure actually does provide some airway splinting and for the rare user is sufficient to keep their apnea at bay.)
Otherwise exactly what Pugsy said.

[palerider]

Here's my point of view: Presuming I suspected sleep apnea issues and had stumbled across this forum first -- Had I known then what I know now (what I've learned from this forum), it is entirely plausible that I could have skipped the sleep study & the Dr appt and self-treated. I could have (without a prescription) bought a gently used APAP from second-wind and either a used mask from someone or new mask components. And I would have saved about $1k that was spent on the sleep-study and follow-up, which from my point of view, was only good for obtaining the initial Rx.

I cannot honestly say that the Rx was really worth $1k. A budget of $1k could have more than covered the cost of the machine, mask, supplies, hose cover, mask liner, mask wipes, one of those hose-hangers, etc, etc... I could have got the works and still come out ahead.

So, given my anecdotal experience -- now that I know I have non-complicated, run of the mill apnea issues and that I respond well to my self-managed APAP therapy -- I don't see a whole lot of value in seeing a sleep doc going forward from this point.

Presuming no significant changes for the worse, is there something I'm missing or not thinking about by going it on my own from this point without a Dr?

No, there's nothing you're missing. Now, if your situation changes drastically, you may need a doctors involvement, though maybe not a sleep doctor, though it's worth keeping in mind that there's more to bad sleep than problems breathing, and a doctor can help with that... pain meds, muscles relaxers, etc.

[nanwilson]

I have never been back to the sleep doc or the DME in my 9 years as a hosehead. I have learned all that I need to know from this fabulous forum and that's the way I will keep it. When I had to go to a pulmonologist for my asthma, he decided I should get a second lab testing done (he owns the lab and DME). I told him my osa was well treated and that if he insisted I would bring him in a bunch of sleepyhead reports to prove it . He politely declined and told me I obviously know what I am doing. He can update his ranch by my coming in for my asthma every 6 months ….. but NOT my osa Never went back to his DME to buy anything either, they were rather rude when I went in to make my last payment on my brick. Now, if I need help I come here and if I need supplies its either cpap.com or an online Canadian supplier.

Cheers
Nan

[ChicagoGranny]

JayDee

If I were self-pay, I would never see a sleep doc.

Around here, the DMEs want a new order and verification of compliance from a sleep doc every year. If you don't get it, they won't order supplies and charge your Medicare account.

Just last week, I had my annual visit with the sleep doc. She was so damn worthless, I wanted to spit in the shrubbery on the way out. Charged Medicare $141 for basically nothing. Next year I will go in with a different attitude - "I'm just here to get the paperwork filed and get the hell out as quickly as possible."

[chunkyfrog]

I go in once a year to feed the bean-counters.
I am as polite and engaging as possible--just so they will remember me if I need help.

[JayDee]

I know there's no "cookie-cutter" therapy and everyone has different needs, but for me personally, it's not complicated. For me, APAP therapy generally tracks along the following steps:
1. Use the machine for a period of time (few days to a week?) to accumulate some data.
2. Run the data through Sleepyhead to see where the pressure spends most of it's time.
3. Set your minimum pressure to a bit under that "most of the time" pressure.
4. Set your maximum pressure to just under where you begin experiencing aerophagia, or leave it at 20 if aerophagia is not an issue.
5. Occasionally (monthly?) repeat steps 1 through 4 and make any mid-course corrections as indicated.

So for me, as nice a guy as he is, I just don't see the need for my sleep doc and I appreciate the confirmation. He's there if I need an Rx renewed for some reason. Other than that, as generic as my therapy is, I think I can go it alone.

Thanks,
-JD

[palerider]

I think I can go it alone.

You're not alone, you've got US!

[JayDee]

I think I can go it alone.

You're not alone, you've got US!

Credit where it's due -- I sincerely appreciate all the feedback, advice and guidance from the cpaptalk.com community. My only regret is not finding ya'll sooner!

Thanks,
-JD

[raisedfist]

Not really. It's honestly hard to take advice from someone who probably knows less than people on this board.

[palerider]

Not really. It's honestly hard to take advice from someone who probably knows less than people on this board.

I assume you mean "the average sleep doc"?

[Muse-Inc]

I don't think you need appts. after getting optimized therapy.

Had sleep study Aug 2007, picked up CPAP equipment and pillow mask 2 weeks later, slowly adjusted to being a hosehead, had good followup visit with doc. 18 months later feeling lousy again and confused, surfing brought me here (via would a digeridoo help?). Rooster and LinkC amongst others mentored me, convincing my stubbornness that I was now a mouth breather and my excruciating lower lung pain needed exhalation relief and/or switch to APAP. Called doc who loaned me an APAP and recording oximeter for several days...wow! APAP was my new love as pain was reducing . I was having some desats from escaping therapy air..okay, need FFM mask, yikes, I am claustrophobic and have a fear of suffocation. Guys here suggested the Innomed(now RespCare) Hybrid. Insurance won't pay...what a surprise NOT Buy an S8 and Hybrid mask, get help dialing in settings, AHI drops to 0 for like 14 days and no leaks!!!, continue to make health & cognitive improvements dropping BP meds, and can exercise again without getting lightheaded/being exhausted. See doc again a few times to have equipment checked, by this time I own the old brick, an S8 APAP, and two S9 APAPs -- I am terrified of not sleeping with my equipment.

I need to replace my 2 original (2007) ResMed hoses as the ends are getting loose; they are 6'6" and I cannot find them anywhere so visiting doc to see if he still sells them and have equipment checked as last check was 2012. On Medicare now, so not sure what hoops I will have to jump through

[raisedfist]

Not really. It's honestly hard to take advice from someone who probably knows less than people on this board.

I assume you mean "the average sleep doc"?

Yes true, I suppose that disclaimer is necessary as some sleep physicians do know their head from their arse. My pulmonologist admits he knows less than me about how to set up and use the PR System One machine I have been using and encourages my knowledge and tinkering as long as I keep him in the loop. I still need a doctor to order me certain tests and pay attention to other things so I don't mind our relationship.