Sleep Doctor doesn't look at data

[chunkyfrog]

My latest sleep doc visit (in March) was over Zoom (covered by Medicare)
They want to do it again next year, but I will check with Medicare first---
Just to confirm coverage . . .

[jimbud]

Referred to combo Sleep Study/DMV franchise company by Cardiologist.
Took home sleep study, received Chinese made CPAP, went back for two follow up appointments, recognized scam, found this forum, demanded copy of my prescription, took machine back, got return receipt, bought my own machine. Never looked back.

I have never been asked about my Apnea Treatment by Primary or Cardiologist since.
Mentioned it to both of them and just got a funny glazed look back.

JPB

Bought a backup machine and a backup machine to the backup machine since.

I am ready!

[peelunkins]

From my experience and observation, here's what happens in too many cases. You go to the doctor because you have sleep issues..$$$. The doctor sets you up with a sleep study $$$. Often you are asked to come back for a titration $$$$. You then go back to the doctor to get the results of the study $$$. The doctor writes a prescription for a machine/mask $$$$. You go and pick up the machine and it turns out that it is set to 4/20....just the way it comes from the factory. You struggle for a week and then go back to the doctor $$$ for him to increase your minimum pressure. For most people, there is no reason they couldn't buy a machine (set at 4/20) and learn to make their own adjustments. Most of the "sleep specialists" are ENTs, Pulmonologists, and Neurologists that added sleep medicine as a sideline.

+1

[bwexler]

I'd like to think that this isn't usual, my sleep doctor looks at and prints my data and gives me a summary of what he sees. And is happy to answer any questions that I might have based on the data. Back when I had a ResMed S9 AutoSet, I used to take the SD card out of the machine and take it with me to my appointment, the doctor insisted on having the data. Now the AirSense 10 sends off my data every day via a cellular data, so my doctor has my data for our appointments without my having to bring in the SD card.

Can't imagine what value a sleep doctor appointment would have if your sleep doctor isn't looking at your data.

If your doctor is only looking at the data available on line, he only sees compliance and AHI.
That is not enough information to meaningfully answer serious questions from people like us.
If he is not downloading data from the SD card His only real value is providing prescriptions, in my opinion.

[kbh209]

so in reality in a non-covid-19-world, it would like Adam Sandler in "50 First Dates" remind my provider who I am and my CPAP history. My provider would look to see if I was compliant, and listened to my concerns. An appointment would be scheduled for six months to a year. The DME called me every three to six months asking if need supplies. Now that I know my sleep specialist only looks for basic information, and I wanting more detailed information, per these forums...I made sure to listen to Pugsy on getting the machine I needed. Oddly enough, my DME was more than willing to give me an APAP machine so I can start recording said data.

In a COVID-19 world, it's still "50 First Dates," with the specialist, just on Zoom, now. Bwahahahaha.


I have been noticing my sleep specialist and his wife "liking" posts on their clinic's Facebook page. I may just use that to my advantage to educate them about Oscar, and this forum.

[peelunkins]

There is a big weird disconnect in the sleep apnea world. Sleep docs know a lot about medicine, symptoms, ailments and the theory of treatment but know literally nothing about the mechanics of how xPAP is actually applied to humans. They don't understand machines, hoses, masks, accessories, nor really anything about how they connect to your face, how to get the pressure into you, and the side effects that occur or how to deal with them. They refer all of that messy stuff to the DME's without even knowing that the DME's are no more knowledgeable than the docs themselves. The xPAP underground represented by internet forums is the only real source of good information about how to make this therapy work. This one is the best.

Sleep docs are useful because they can write prescriptions, and that's it. DME's are useful because they can get you equipment through insurance, and that's it. The rest is right here.

(Incidentally this is why most sleep apnea patients fail at xPAP therapy. We're not used to docs being useless. It is easily one of the worst fields of medicine and one that is rife with fraud and waste. You should be able to buy an auto xPAP machine at Walgreens for $150 and have Pugsy help you set it up.)

+1

[Jerseyguy]

My Dermatologist "requires" I go to a specific specialty pharmacy for my psoriasis injection. Ok not officially requires but he was not happy when I mentioned I was considering going to another one. Appears that this pharmacy advertises to doctors that they will handle all the pre-authorization paperwork and handle the insurance issues, most independant practices are selling out to a regional chain or with regular doctors hospital systems. Imagine if your sleep doctor required you go to a certain DME (its a little different as I cant get my dentist to write me a prescription for my medicine). Health insurance is getting worse. Atleast sleep apnea offers a little more independence.

[HD4Mark]

My Dermatologist "requires" I go to a specific specialty pharmacy for my psoriasis injection. Ok not officially requires but he was not happy when I mentioned I was considering going to another one. Appears that this pharmacy advertises to doctors that they will handle all the pre-authorization paperwork and handle the insurance issues, most independant practices are selling out to a regional chain or with regular doctors hospital systems. Imagine if your sleep doctor required you go to a certain DME (its a little different as I cant get my dentist to write me a prescription for my medicine). Health insurance is getting worse. Atleast sleep apnea offers a little more independence.

A little off topic but my dermatologist prescribed a liquid to be applied to the top of my head where I had a pre-cancerous spot from years in the sun. Only came from one "pharmacy" in Florida, I can't swear it was FDA approved, very expensive and not covered by my insurance that is pretty good about that stuff. So I called them and asked if there was an alternative or generic. Wow, wouldn't you know it, there was a different one covered by my insurance. It worked BTW.

I'm now going through a battle to get a Bleep. My DME said they had a couple and they were a miserable failure, hmmm I told them online (here) they had glowing reviews. So I asked if they can order one. Nope. Called my insurance and got in-network DMEs. First one I called said they can order it and will call their contact at my doctors office. Still waiting on the results.

I guess these outfits expect you will just take it and not question or go somewhere else.

[Okie bipap]

The sleep clinic we use has a doctor on staff. He reviews all sleep studies and does the initial prescription for the machine. After that, all of the routine day to day operation is handled by the nurse practitioner. We see her every six months, and she reviews our data and signs the scripts for our supplies. My wife saw her once a month for the first six months of therapy while they adjusted her pressure. They had to do gradual pressure adjustments in order to minimize the central apneas.

[TheClerk]

From Canada here.

My own experience is that I checked all the boxes for good old Obstrusive Apnea so, my GP didn't think a lab test was warranted. I went to a DME that was recommended and where I could get a home test.

Did the test, brought it back to the DME who sent the results to a pneumologist that has no link with the clinic and was paid via our public system for that consultation.

Got a call from the pneumologist to tell me I had severe Apnea, 34 events per hour and the 3 options at my disposal (CPAP, mouth piece or surgey). He suggested the CPAP as the first sensible step. and sent the script to the DME.

I didn't complain about not receiving the scrip directly since, I had decided to deal with the DME anyway and, I was seeing this as a test: would they try to retain my scrip?

It wasn't a problem; they gave it to me almost as soon as I arrived for my appointment, along with my test results.

The scrip was for a 6-20 setting. What was funny as hell was the fact he had specifically written that he didn't want to see any of my data, unless I had issues with the machine...

The RT at the DME properly explained everything to me and I had 2 follow-up calls since starting. treatment's been going good so, nothing much to tell but, she does check at my data. To what extent I don't know but, she does. She was a bit freaked the first time that I had changed the minimum pressure to 7, saying the doc normally needs to sign up on this but, I told her I needed to do it as I was not getting enough air. In my mind, the information I got here made it safe for me to do so and, there was no way I would call the DME about it, wait for them to get the ok from the doc (who didn't seem to really want to be involved anyway) and wait for the DME to apply the change!

[zonker]

all these fine responses.

and summer snow hasn't even come back to look.

oh, well...

[Chris8243]

I feel very lucky after reading all these responses. I love my sleep doctor. He is trained in Primary Care which he practiced for years but then became a sleep specialist. Works in the “Sleep & Respiratory Center” at a hospital. He is so easy to talk to, patient, and answers all my questions. He also has sleep apnea so he can totally relate and speak about different masks based on his own experience. He looks at my data from the SD Card, we talk about it, and I feel confident about his advice. He is so nice, makes me feel that he truly cares about me.

I found him randomly! Called and made an appointment. I live in northwest Wyoming, USA and many people here travel to Billings, Montana for medical care. For me it’s 100 miles away - but out here there is no traffic and it’s an pleasant, easy drive. Many people go to Billings regularly to shop - lots of stores including Costco. Woo-hoo! The only other shopping less than 100 miles away is one WalMart. We do have smaller “downtown” stores, but very limited. The other “bonus” about Billings is a variety of restaurants, and I usually fly out of the airport there. TMI, sorry, but just sayin’ how different it is to live in the least densely populated state! I do buy my supplies from my local hospital.

[Miss Emerita]

You are VERY luck with your sleep doc! This is totally off-topic, but I've been reading some mysteries by the late Peter Bowen, set in eastern Montana. Enjoyable reads with an eye-opening perspective on what is for me a different way of life.