Sleep Doctors. Any Success Stories?

JQLewis · Post by **JQLewis** » Mon Jul 14, 2014 4:12 pm

I have an appointment this Friday with my fourth sleep doctor since being diagnosed with severe OSA four months ago. Four doctors in four months (please see my previous threads for details). I'd checked the credentials of all these doctors before consulting with them, and they were all board certified, etc. I did all the due diligence I was able to do, and I still got three bad docs out of three. Per advice that I received here I made this Friday's appointment with the head of sleep medicine at a major hospital center's sleep lab. I have had good dealings with the doctors from this hospital before, but I'm not going to assume anything after what I've experienced so far.

I don't know what is reasonable to expect. My previous notions of rational, responsible healthcare have been turned upside-down in the last four months, and my confusion only grows with every new fact I learn. So far my therapy has failed to produce any subjective benefits. My sleep is even more broken than before beginning CPAP therapy, and I am less functional. In addition I have experienced aerophagia and blurred vision as a result of my therapy. I'm not even sure what to ask at this point, but to try a few random questions:

1- What should have been done when my therapy failed to produce the hoped for result? If a patient has a brick, what can a doctor do? I've never heard of a therapy with absolutely no objective component.
2- Can I expect any doctor to treat me once the sleep study has been done? That seems to remove most of the financial incentive doctors have to treat someone.
3- Can I expect a doctor to care about data on AHI not obtained through a sleep study? Do any doctors monitor the readouts from data capable X-PAP machines? And adjust patient's therapies accordingly? If so, how often do they monitor this data?
4- Are there doctors who want their patients to take part in their therapy? This article suggests maybe yes, maybe no, but it was written five years ago. Has anything improved?

At this point I'm just trying to avoid making any more mistakes, but it's difficult as there's just so much I don't know. What I want is:

1- Get a script from my new sleep doctor for an autoset with full data capability.
2- Be able to access and change all necessary settings on my machine.
3- Know that the doctor will do what is required to replace the brick in my sig, which includes explaining the medical necessity of this exchange of machines and standing by me in case the script gets rejected and an appeal is required.
4- Obtain an extension on my rental period so that I can keep the current machine until I get a replacement.
5- Provide me with a copy of the script so I can deal with DMEs directly.
6- Make sure that any DME the doctor might recommend is reputable.

How possible is any of this? Does anyone have any success stories to share? If you're in the NYC area and have been treated successfully I would very much appreciate any information as to how you found effective treatment.

chunkyfrog · Post by **chunkyfrog** » Mon Jul 14, 2014 5:12 pm

At this point it is up to your doctor and what impression he has of you.
I really appreciate having doctors who are geeks, and I let them know I value their interest in technology.

ems · Post by **ems** » Mon Jul 14, 2014 5:25 pm

chunkyfrog wrote:At this point it is up to your doctor and what impression he has of you.

Instead of saying something so dumb to get your post numbers higher, why not allow someone who is a bit more savey give him the feedback he deserves!?

Guest · Post by **Guest** » Mon Jul 14, 2014 6:17 pm

Credentials have no bearing on the docs personality, absolutely none. Talk to people you know about the docs they use, doesn't have to be a sleep doc.

I would not tell any doc I want to change the settings, esp on the 1st visit.

Yes, by all means do insist on getting a written copy of any prescription. You will also need a copy of your sleep study for you to deal w/any DME. All the rest of your questions are really up to you to ask the doc about.

btw - Dr Park is in NYC.

Julie · Post by **Julie** » Mon Jul 14, 2014 7:18 pm

Ems! What side of the bed did you get up on? So Chunky did not leave a profound highly technical answer... so what! I like reading her stuff and I know everyone else does too... relax already.

ems · Post by **ems** » Mon Jul 14, 2014 7:33 pm

Julie wrote: I like reading her stuff and I know everyone else does too... relax already.

I certainly get your point, Julie. Just perhaps... the half you know does - the half I know don't.

chunkyfrog · Post by **chunkyfrog** » Mon Jul 14, 2014 8:11 pm

It is also possible that a lot of people who come here are not super techies;
and maybe they would like to know that you don't have to be a genius to handle this challenge we all face.
Go ahead and feel superior; I'll just settle for nice--too little of that in this world.

Guest · Post by **Guest** » Mon Jul 14, 2014 8:17 pm

chunkyfrog wrote: I'll just settle for nice--too little of that in this world.

Yea I've seen how nice you can be. NOT

chunkyfrog · Post by **chunkyfrog** » Mon Jul 14, 2014 8:21 pm

Sometimes less is more. Chew on that, "guest"

ems · Post by **ems** » Mon Jul 14, 2014 8:24 pm

chunkyfrog wrote:It is also possible that a lot of people who come here are not super techies;
and maybe they would like to know that you don't have to be a genius to handle this challenge we all face.
Go ahead and feel superior; I'll just settle for nice--too little of that in this world.

I'm certainly not a super techie ... which is the point. A post such as the OP's deserved an answer from someone more knowledgeable than either of us. That's all I meant to say and should have said. How about let's go forward with the OP's post which I will repost.

ems · Post by **ems** » Mon Jul 14, 2014 8:24 pm

JQLewis wrote:I have an appointment this Friday with my fourth sleep doctor since being diagnosed with severe OSA four months ago. Four doctors in four months (please see my previous threads for details). I'd checked the credentials of all these doctors before consulting with them, and they were all board certified, etc. I did all the due diligence I was able to do, and I still got three bad docs out of three. Per advice that I received here I made this Friday's appointment with the head of sleep medicine at a major hospital center's sleep lab. I have had good dealings with the doctors from this hospital before, but I'm not going to assume anything after what I've experienced so far.

I don't know what is reasonable to expect. My previous notions of rational, responsible healthcare have been turned upside-down in the last four months, and my confusion only grows with every new fact I learn. So far my therapy has failed to produce any subjective benefits. My sleep is even more broken than before beginning CPAP therapy, and I am less functional. In addition I have experienced aerophagia and blurred vision as a result of my therapy. I'm not even sure what to ask at this point, but to try a few random questions:

1- What should have been done when my therapy failed to produce the hoped for result? If a patient has a brick, what can a doctor do? I've never heard of a therapy with absolutely no objective component.
2- Can I expect any doctor to treat me once the sleep study has been done? That seems to remove most of the financial incentive doctors have to treat someone.
3- Can I expect a doctor to care about data on AHI not obtained through a sleep study? Do any doctors monitor the readouts from data capable X-PAP machines? And adjust patient's therapies accordingly? If so, how often do they monitor this data?
4- Are there doctors who want their patients to take part in their therapy? This article suggests maybe yes, maybe no, but it was written five years ago. Has anything improved?

At this point I'm just trying to avoid making any more mistakes, but it's difficult as there's just so much I don't know. What I want is:

1- Get a script from my new sleep doctor for an autoset with full data capability.
2- Be able to access and change all necessary settings on my machine.
3- Know that the doctor will do what is required to replace the brick in my sig, which includes explaining the medical necessity of this exchange of machines and standing by me in case the script gets rejected and an appeal is required.
4- Obtain an extension on my rental period so that I can keep the current machine until I get a replacement.
5- Provide me with a copy of the script so I can deal with DMEs directly.
6- Make sure that any DME the doctor might recommend is reputable.

How possible is any of this? Does anyone have any success stories to share? If you're in the NYC area and have been treated successfully I would very much appreciate any information as to how you found effective treatment.

BleepingBeauty · Post by **BleepingBeauty** » Mon Jul 14, 2014 11:42 pm

JQLewis wrote:I have an appointment this Friday with my fourth sleep doctor since being diagnosed with severe OSA four months ago. Four doctors in four months (please see my previous threads for details). I'd checked the credentials of all these doctors before consulting with them, and they were all board certified, etc. I did all the due diligence I was able to do, and I still got three bad docs out of three. Per advice that I received here I made this Friday's appointment with the head of sleep medicine at a major hospital center's sleep lab. I have had good dealings with the doctors from this hospital before, but I'm not going to assume anything after what I've experienced so far.

Hi, JQ. I feel you. I don't think "board certified" means much, truthfully. The sleep docs I've consulted in the past were board certified, but I only began to do well with this therapy when I came here and learned about xPAP from other users and opted to control my own therapy. I got good advice here and eventually figured out what was right for me, and I've been successful with my therapy for five years now.

But it really does depend on the particular doctor. I've recently hooked up with a pulmonologist (who's board certified in sleep medicine) that I met when I was hospitalized for pneumonia about six weeks ago. I saw him recently for a follow-up (for the pneumonia), and he'd asked me to bring some of my xPAP data with me to the appointment. To my great surprise (and delight), he commented on the data, and it was obvious to me that he knew what he was looking at and talking about. When I met him in the hospital and he saw my machine, he questioned me about who was handling my therapy. When I said I was doing it myself, he balked (as if he didn't think any user was capable of doing that). I became defensive about it (because I've run into this same attitude from sleep professionals many times), and then I apologized for my attitude towards him the next day, explaining the bad history I've had with sleep docs in the past; thankfully, he was understanding and accepted my apology, and all was then good between us. When he saw my data last week, he was really interested in it and pleased that I've been able to dial in my therapy on my own. I was pleased to find a doctor like him, finally. He asked that I bring data to each follow-up appointment.

I don't know what is reasonable to expect.

Unfortunately, I don't know the answer. Based on my past experience with sleep docs, the answer is "not much." But now I've found this new doc, and I'm pleased with him (so far, anyway). Ideally, I think we'd expect a doc who's knowledgeable and willing to treat a user with respect, to work with us to make the therapy experience as smooth and successful as possible. Unfortunately, I just don't think that's realistic. It seems to me that most docs who become "board certified" in sleep medicine do so because it's a lucrative field, not because they really want to work out the problems we users have. *shrug* I'm happy to have found this new doc but, to be honest, I don't *need* him; it's good to know that I can consult with him if/when I have a problem, but I've been managing my therapy successfully for years now. Having him on-board re: my therapy is a bonus, not a necessity.

My previous notions of rational, responsible healthcare have been turned upside-down in the last four months, and my confusion only grows with every new fact I learn. So far my therapy has failed to produce any subjective benefits. My sleep is even more broken than before beginning CPAP therapy, and I am less functional. In addition I have experienced aerophagia and blurred vision as a result of my therapy. I'm not even sure what to ask at this point, but to try a few random questions:

1- What should have been done when my therapy failed to produce the hoped for result? If a patient has a brick, what can a doctor do? I've never heard of a therapy with absolutely no objective component.

The short answer to the second question: Not much, except make a guess as to what pressure(s) would produce better results. A brick is just that - you can throw it through a window, because that's how useful it usually is.

When I was not experiencing the benefits of xPAP early on, my sleep doc gave me an APAP (which recorded data) to use for a week to see what it indicated as far as pressure needs were concerned. That was all well and good, except he neglected all of the leak data (and the leak was out of control at the time, which will negate the AHI data). The leaks didn't wake me, so I was unaware of them. He'd suggest a minor change in pressure each time I trialed an APAP for a week, but the leaks I was experiencing made my therapy useless, and he never mentioned them.

2- Can I expect any doctor to treat me once the sleep study has been done? That seems to remove most of the financial incentive doctors have to treat someone.

It does. The trick is to find a good doc who's more interested in your welfare than s/he is in the monetary return. I felt like my first sleep doc was in it for the money (and I, too, had a brick when I started therapy). This new one is obviously not profiting from my therapeutic needs in any way; I'm seeing him for the pneumonia. I got lucky.

3- Can I expect a doctor to care about data on AHI not obtained through a sleep study? Do any doctors monitor the readouts from data capable X-PAP machines? And adjust patient's therapies accordingly? If so, how often do they monitor this data?

Yes, you can. It's not always the case, but it is possible. As to how often a good one will monitor your therapy, I couldn't say. I only know this new doc wants to see my data whenever he sees me (which is monthly, at this point, due to the pneumonia follow-up).

4- Are there doctors who want their patients to take part in their therapy? This article suggests maybe yes, maybe no, but it was written five years ago. Has anything improved?

Yes, there are. They seem to be few and far between, but they're out there. Dr. Park (the author of the article you linked) is a very well-known sleep doc; he has participated in this forum, so you might want to do a search for him here. He's also in NYC, like you.

At this point I'm just trying to avoid making any more mistakes, but it's difficult as there's just so much I don't know. What I want is:

1- Get a script from my new sleep doctor for an autoset with full data capability.
2- Be able to access and change all necessary settings on my machine.
3- Know that the doctor will do what is required to replace the brick in my sig, which includes explaining the medical necessity of this exchange of machines and standing by me in case the script gets rejected and an appeal is required.
4- Obtain an extension on my rental period so that I can keep the current machine until I get a replacement.
5- Provide me with a copy of the script so I can deal with DMEs directly.
6- Make sure that any DME the doctor might recommend is reputable.

1 - Definitely DO get the script. Make a copy of it to keep with your machine at all times, especially if you do any traveling.
2 - The vast majority of us here on the forum do just that. DMEs are instructed NOT to give us the manual that comes with the machine we're given, but manuals are easy to come by on our own.
3 - Any doc can write a script for xPAP equipment, so you don't *have* to have a sleep doc do it. If you have a good PCP that will work with you, they can write it. You can worry about finding a good sleep doc after the fact, if necessary.
4 - I don't know about an extension on the rental. I would hope you'd be able to return this crappy machine, get out of the contract that came with it, and get a better machine.
5 - Refer to #1 above, and DO get the script. Then you can choose the DME you'll be working with (find out which DMEs are contracted with your insurance, and interview them).
6 - Yes, do that, but don't rely on the doc to know which DME is good and which is not. I don't think most users who have a legitimate complaint about their DME ever make that known to the doc who recommended them.

How possible is any of this? Does anyone have any success stories to share? If you're in the NYC area and have been treated successfully I would very much appreciate any information as to how you found effective treatment.

It's definitely possible. Learn all you can here. That's what I did, and I consider myself a success story as a result. It wasn't easy, but you can do it.

There's a "sticky" thread at the top of the page that was started by a forum member, asking for success stories. You might find great moral support in that thread.

We long-timers understand how you feel right now, as there's a lot to know and understand about the whole subject, and it's all new (and very confusing) to you now. But you're not alone here, and you'll surprise yourself at what you can learn and do for yourself. IMO, a positive "can-do" attitude is the most important factor when you're starting out. Every problem you might have is solvable. You just have to be determined to succeed with your therapy.

Best of luck, and keep us posted (no pun intended)!

Guest · Post by **Guest** » Tue Jul 15, 2014 3:23 am

chunkyfrog wrote:Sometimes less is more. Chew on that, "guest"

and you call that nice froggie?

49er · Post by **49er** » Tue Jul 15, 2014 3:55 am

As one who has said things I definitely regretted on this board, can I respectfully ask everyone posting in this thread to please stick to the topic? This is of great interest to me and I really would hate to see it get sidetracked.

Thanks!

49er

zoocrewphoto · Post by **zoocrewphoto** » Tue Jul 15, 2014 5:35 am

It seems to be rare, but my doctor prescribed a full data machine because he wanted to see the data. He did not need to change my settings as they work very well. But he did review the data and was pleased to learn that patients could now look at their own data too. I went back with my mom and data from my machine (she borrowed it for two partial nights). Medicare would not pay for a new sleep study, but she wasn't feeling like the therapy was very successful. He reviewed the graphs I had printed and her old sleep study. He then prescribed a new full data machine like mine with a range of pressures, and she is doing much better.

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