Sleep Doctors. Any Success Stories?

[purple]

I suspect that sleep docs group all newcomers into a particular mold. At first they want us to use the machine, choose the right mask for us, and work on getting the leaks down. Then they can listen to us, and realize the other problems which are special to our personal situation. AHEM.

Problems begin when the overnight sleep study, for whatever reason, did not reveal the real nature of the health problems the individual has. Missing a Cheyne Stokes diagnosis being one. I am betting all your three sleep docs so far are using the same sleep study to make decisions. Doing another sleep study is not likely to be helpful until you choose the mask which works for you, and get your leaks under control. Then the data from a new sleep study might make sense. But if you have a full data machine at that point, why go through the misery, and cost of a sleep study.

I am guessing the doc might not have liked the brick machine either, but the doc might have marching orders from on high. The nature of managed health care. If you have the buckitos, and since you have aerophagia, I would strongly suggest a bi-level machine with auto capability (which would surely be full data)

If you have insurance to buy a machine, then there are likely some hoops you will have to jump through to get either an auto machine, or a Bi-Level machine.

I used to have a fully certified RT, whose daily job was in a hospital intubating people and such to keep them alive. Patients with MS, serious breathing issues. A highly qualified person. She said that in the DME side of her life (she had two jobs) over ninety percent of her patients had what we, on the forum, call brick machines, and were perfectly happy with their treatment. No doubt insurance companies look at that data in not wanting to pay more for machines.

I suspect that it is true that it is not just, those on this forum came here looking for help because their sleep docs were incompetent, but rather they had special problems, which either the doc did not recognize, or because of managed care/insurance rules, they had to go through a series of trials before they could prescribe more sophisticated therapy. but I have been wrong before. I was not there with the patients whose docs barely entered the room before the doc left.

All my sleep docs have been great. Part of that being that once they saw I was concerned about making my life better, and trying to do the treatment.

I know my General Practitioner became more interested in helping me when I started bringing a bicycle helmet to my medical appointments. In truth I was getting more exercise when I walked to appointments instead riding a bicycle over, but then, they did not know I had not come in a car.

[munkyBeatz]

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?


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.

If you're not feeling the subjective 'bliss' from using PAP, you should talk to the physician about other modalities of treatment. PAP is not the only approach, others aren't quite as easy to objectively quantify, but if you don't like PAP then try something else. Explore different options with the physician. [e.g. provent/oral device/etc.]
- Yes you can expect the physician to treat you if you've already had a sleep study done.
-The AHI gained from a PAP device is a "residual AHI" and is only considered after minimum 2weeks of solid use, preferrably 30days. You have to look at the residual readings from a PAP device like your credit score. It's going to fluctuate day to day, if you watch it too closely you'll go nuts. You have to give it time, then look at a trend over that time.
- You do not have to get a written script from the physician, nor do you have to use the DME the physician refers you to. You can request your info be given to any/all DME suppliers that you want. Once you're a patient, they will send it wherever you need it.


As far as thinking the words 'board certified' doesn't mean anything, I'll completely disagree with anyone making that statement. The board certification is only issued after the physician has spent a period of time directly specializing with sleep disorders, and the boards are very hard to complete. The physician has to know their stuff, sleep, very thoroughly to get passed these boards.

If you start a relationship with a physician with telling them how multiple doctors were wrong, I know what's right, it's going to make them take things you say a little more lightly. Just explain what you've already done, what you didn't like, continuing issues and if they think any other modalities might be an option. There is a fine line between being actively involved in your healthcare, and wanting to be your own physician but just needing their signature to get what you want.

[happydaz]

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

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

+1

[sc0ttt]

My sleep center was a pleasant place.

My DME is nice and clean with friendly staff, and they don't even sell bricks.

My doctor explained everything to me thoroughly and told me to look up on-line how to access the secret menu (but I didn't need to because the DME left the secret instructions in the package). The prescription form he uses lists all the possible machines and masks and it doesn't include any bricks.

[JQLewis]

Thanks, everyone, for your replies.

After I posted my thread it occurred to me to check where Dr. Park practices. It's in the Bronx, which isn't close to where I live but I'd travel a lot further if I knew I'd be seeing someone who cares about their patients. If the doc I'm seeing Friday proves to be another waste of time, I will look into seeing Dr. Park.

As far as being a "super techie" goes, I minored in computer science and I do web development, so I would consider my tech skills above average. I certainly feel I can handle the technical side of managing my own treatment. I don't really care who does that, but I do care than someone does it. Otherwise, it's not medicine, imo. Medicine may not be an exact science, but science has to enter the picture somewhere. If you undergo physical therapy for an injury, for example, your subjective feelings will be important (are you still in pain?) but there will also be objective factors that will be measured: range of motion, strength, etc.

Problems begin when the overnight sleep study, for whatever reason, did not reveal the real nature of the health problems the individual has. Missing a Cheyne Stokes diagnosis being one. I am betting all your three sleep docs so far are using the same sleep study to make decisions. Doing another sleep study is not likely to be helpful until you choose the mask which works for you, and get your leaks under control. Then the data from a new sleep study might make sense. But if you have a full data machine at that point, why go through the misery, and cost of a sleep study.

I am guessing the doc might not have liked the brick machine either, but the doc might have marching orders from on high. The nature of managed health care. If you have the buckitos, and since you have aerophagia, I would strongly suggest a bi-level machine with auto capability (which would surely be full data)

No, my first sleep doctor loved my machine. He scripted for the specific make and model. My insurance company has assured me that they would have approved a better machine if it had been scripted. My conversation with my sleep doc went like this (he speaks with a very heavy Russian accent).

After I told him that my therapy wasn't working, I asked why he'd provided that particular model.

He replied, "Good machine. Best machine! Why you don't like machine?"

I replied that it didn't seem to be helping me, and that the lack of therapy data made it impossible to determine what was wrong. It might be a problem with leaks, for example.

He replied, "What good would the data do you? If you found out you had leaks, what could you do about it?"

I replied that I would make whatever adjustments were necessary to correct the problem.

He shrugged dismissively.

What he did agree to do was to try and get me a different mask, a nasal mask to replace my FFM, in order to combat my aerophagia. He said nothing to me about the difficulties of making such a switch. Nothing about chin straps or taping my mouth shut. I had been 90% sure I was going to fire him before that visit, and 100% sure after his comments about the usefulness of data, so I really didn't care what he said about the mask. As it turned out, the script for the mask was rejected as "medically unnecessary".

I already have a script for a data capable autoset machine which was written by my PCP. However, if a request by a pulmonologist for a simple switch of masks was rejected I can't believe that a script written by a PCP for a new machine will be honored. There's a right way to do that and a wrong way. You have to request that the insurance company consult with the doctor regarding the medical necessity before they make their decision, or else they will reject it solely on the basis of equipment numbers and replacement schedules. If a doctor isn't willing to fight for you, it simply won't happen. A specialist's opinion will given a lot more weight in such a process. If the sleep doc I'm seeing on Friday won't do what's necessary I'll submit the script from my PCP, but I hold out very little hope for that. Then my only hope will be the "nuclear option". I'll drop my insurance company, get a new company and hope that will get me what I need.

Managed health care has certainly let me down so far, and if things continue like this I may have no choice but to try going it on my own. But as you point out, there may be other health problems involved. All the dial wingin' in the world won't help you if that's the case. My concern right now is that I don't do anything to jeopardize my insurance. I don't want to be dropped for refusing treatment or not following proper procedures. It seems to me my best chance is to find an ethical doctor and try to work within the confines of the admittedly insane rules of the insurance world, which considers a CPAP and an APAP machine as the same thing. If and when I've exhausted all avenues of approach withing the system, I will consider going it on my own.

[JQLewis]

My sleep center was a pleasant place.

My DME is nice and clean with friendly staff, and they don't even sell bricks.

My doctor explained everything to me thoroughly and told me to look up on-line how to access the secret menu (but I didn't need to because the DME left the secret instructions in the package). The prescription form he uses lists all the possible machines and masks and it doesn't include any bricks.

Sounds like a good experience. If I may ask, what kind of follow-up did they do with you once they'd given you the machine? Did they use the data from the machine to adjust your treatment? Did they allow you to make adjustments yourself, or did they want to do it for you?

[sc0ttt]

Sounds like a good experience. If I may ask, what kind of follow-up did they do with you once they'd given you the machine? Did they use the data from the machine to adjust your treatment? Did they allow you to make adjustments yourself, or did they want to do it for you?

I haven't been back to the DME. My follow up with the respiratory doc was after one month of usage. My sleep lab recommended 10cm wg but the doctor wrote the script for 8; when I asked him why he said he gets better compliance from new patients if they start at a lower pressure - then he told me to increase it to 9cm for a week, then to 10cm; and if I didn't get consistent AHI's below 10 (on the LCD screen), I could go up to 11.

I didn't bring in the machine, just my SD card. He had a big readout of data from my card, but I wasn't SleepyHeading yet so I didn't know what he was looking at. He said my compliance was good and the therapy seemed to be effective. Told me I could play with humidity, C-Flex, and ramp to get whatever I felt comfortable with.

He also said that insurance companies are getting better about paying for CPAPs because they've started to recognize that untreated apnea can mean strokes and other big, expensive problems. I kind of thought he was telling me that if the insurance company pays for it, then I should recognize how important it is personally... but I was already convinced and committed.

[BuddhaCat]

As a newbie, I have to add that I'm very disappointed in my sleep doc. She is young and I figured "oh, she's on top of the latest research;" sadly, no. When I asked, she wouldn't even talk about the effect of OSA and sleep hormones.

I was diagnosed via a home sleep study because my insurance won't pay for a clinical sleep study unless I fail the home version. I was also "titrated" at home. When I returned after a week to see the doc, she read my data card and gave me a prescription for a machine. I asked for my data, and she looked at me as though I have 5 heads. I presented her with the CPAP diary I'd been keeping, thinking that she'd like to see what was working for me and what wasn't. Sadly again, she wasn't interested. She said something to the effect of: "It sounds like you're kind of obsessing about this." I looked at her and said, "I analyze things for a living. Why wouldn't I analyze my own health?"

Needless to say, any progress I make in this therapy will come despite her rather than as a result of her. I've been on this forum less than a week, and I've already learned a ton. Thanks for being the resource I desperately needed!

[Guest]

I'll drop my insurance company, get a new company and hope that will get me what I need.

If we knew which insurance you have someone here might be able to assist you further.

[JQLewis]

Sounds like a good experience. If I may ask, what kind of follow-up did they do with you once they'd given you the machine? Did they use the data from the machine to adjust your treatment? Did they allow you to make adjustments yourself, or did they want to do it for you?

I haven't been back to the DME. My follow up with the respiratory doc was after one month of usage. My sleep lab recommended 10cm wg but the doctor wrote the script for 8; when I asked him why he said he gets better compliance from new patients if they start at a lower pressure - then he told me to increase it to 9cm for a week, then to 10cm; and if I didn't get consistent AHI's below 10 (on the LCD screen), I could go up to 11.

I didn't bring in the machine, just my SD card. He had a big readout of data from my card, but I wasn't SleepyHeading yet so I didn't know what he was looking at. He said my compliance was good and the therapy seemed to be effective. Told me I could play with humidity, C-Flex, and ramp to get whatever I felt comfortable with.

He also said that insurance companies are getting better about paying for CPAPs because they've started to recognize that untreated apnea can mean strokes and other big, expensive problems. I kind of thought he was telling me that if the insurance company pays for it, then I should recognize how important it is personally... but I was already convinced and committed.

Thanks. It seems to me that a couple of factors are at play here. The insurance company's lack of enlightened self-interest and the medical community's investments in sleep labs. These labs are cash cows and they cost money to set up. Home titration and data capable machines are a threat to the established model of sleep treatment. But the established model of sleep treatment seems to result in a huge percentage of patients becoming non-compliant. This works to everyone's disadvantage, especially the heart attack and stroke victims. I seem to have gotten caught in the middle of this conflict. I live in NYC though. There's gotta be enlightened sleep labs here somewhere. Dr. Park's lab may be the answer if Beth Israel lets me down on Friday.

[Guest]

Dr. Park's lab may be the answer if Beth Israel lets me down on Friday.

Call now....I am sure he is booked months out.

[JQLewis]

I'll drop my insurance company, get a new company and hope that will get me what I need.

If we knew which insurance you have someone here might be able to assist you further.

Metroplus. I've been in touch with them many times about my situation. The rules involved seem to be pretty generic though. I first posted here two weeks into my treatment, and put my machine in my sig. I was immediately told that whoever stuck me with this machine had done me no favor. That getting it replaced would be a big problem. If anyone knows a specific strategy related to Metroplus I would love to hear it.

My problem is that all my efforts so far have taken too long. The rental period on my brick is up on the 25th. If the doc I'm seeing on the 18th gives me a script for a new machine, great. If not I'll submit the script I got from my PCP. I will have to request that Metroplus:

1- Extend the rental period on my brick.
2- Consult with my doc about the medical necessity of his replacement script before making their decision.

If they still reject the script I can appeal the decision, but I know absolutely nothing about that process. If that fails I will be faced with the decision as to whether I should accept the brick or reject it. I'm uncertain what would happen then. I have been told by a rep at the NY State of Health website that I would be free to start from scratch, but these state-run exchanges are still working out the kinks and I have gotten a lot of bad info from them in the past.

[ShelaghDB]

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.

In other words, MEN don't

You won't be the first person on sleep apnea boards to block woman's posts.
But more surprised when I see woman do it

[ShelaghDB]

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.

Being in Toronto I cannot make a suggesting pertaining to your insurance costs but I have seen several other Americans advise that one should visit several doctors and before agreeing to a sleep test, telling the doctor that they will give the business only to the doctor that will prescribe a AutoSet.

In your case you have lost a bit of that advantage by having the tests already done but you still need to get masks, etc so depending on your insurance, IF its covered and you are not paying out 100% cash, they still need your money.

Another option is to do what many of us have done that can't get Auto Sets prescribed.

I sold my S9 ESCAPE on Kijij with only 2-3 months on it for $200 AFTER I purchased a brand new S9 Auto Set for $650 that came with everything plus included a brand new still sealed expensive nasal mask as well...

The S9 Elite with everything plus a mask can be purchased here for $450

Kijiji here in Toronto is an alternative to Craigslist. Same thing really.

I have given up on doctors and I am only 3 months in and bought an AutoSet and get more from this forum than any doctor could provide

[Catlizg]

My husband and I absolutely lucked out with both the doc and the DME. Both are quite aware that I know how to change my husband's BIPAP and my APAP, that I follow our data, and am VERY proactive in our care. And both have told me they wish more of their patients did the same! The doctor has pointed out that if I did not second guess my husband's "mild apnea" diagnosis by another practitioner, we would not have discovered his central apnea nor it's severity. The DME told me that I am the only patient that knows and understands the terminology and my machine. I let them know what a resource this site was for me and that I think it made a huge difference in compliance. They agreed but stated that most patients put their mask on, push the on button and that's the extent if their involvement. Then it dawned on me - of course! My contact with other PAP users has been on this site with people who are vested in their own care. The 2 family members I know of that do use a machine don't know a thing about it other than the comfort of their mask.