Need opinions - am I looking at this wrong?

[jrwill228]

Was on APAP some 10 years ago (discontinued) and have now since wound up going to ENT for issues I won't go into (allergy stuff)... he is apparently a "board certified sleep apnea md" or whatever its called and "suggested" that with the symptoms I am having, a sleep study would be in order.
Had the first sleep study done and was dx'ed with severe sleep apnea (mostly central sleep apnea).  So I went to the second sleep study. They recommended a setting of CPAP at 8 (which isn't that much), with a Mirage FX nose mask (wasn't given another choice).  Went to the DME supplier (who is an RT) to get the equipment.  She was surprised that the rx said fixed pressure at 8 (I guess she expected APAP setting for some reason).  FYI.... it took a month after the second sleep study to get the MD office to send the rx to DME.  I suspect the "nurse" did it and not the MD and she just followed the study notes, but I can't prove this.

So I leave the DME with a DreamStation (with humidifier) with a DreamWare nasal mask and use it for about 3 or 4 nights.  Each morning I wake up, I feel real tired and like I've been beaten while I slept.  I actually feel worse than before I started treatment.  I called the DME and had them pull/download the data from the machine, and I'm apparently still pulling AHI's of 31 or better with multiple CA and OC and hypopneas in the 110+ range.  The RT at the DME said that the machine at this setting was, "completely ineffective", and that I should contact my MD.

So I went to the MD (where I also get my allergy shots) and told them I needed to talk to someone about getting the pressures adjusted on my machine.  I was told the MD's nurse was at the other office and that she would call me back.  I got a call later that day and I was told that the next available appt for a "CPAP compliance appt" was in about a month.  I reminded them that the current setting was "completely ineffective" and needed to be changed to be of any use.  They still insisted the next appt was in a month.

I called the DME back and it was "suggested" I find an MD that had more experience with CPAP and sleep apnea patients and could understand what I was saying to them.  

So here I sit with a machine that is doing me no good even if I use it, that the insurance will pull if I don't use it for at least 21 days a month - EVEN AFTER THEY WERE TOLD that the setting were ineffective.

So even if I get another md, I have to get another authorization and I have to turn this equipment back in and get new equipment.

Am I missing something here or is this the normal way these doctors operate?  I'm getting absolutely no assistance from the DME company or the MD office.

Any suggestions other than find another MD?  I've been dealing with this "disease" for months and I am so very tired of it and the BS I've had to go through just to get treatment.

[justMongo]

Sadly, for many, that's how the system operates.
With a dx of severe central sleep apnea, the logical step is to set you up with a PAP machine known as an Auto Servo Ventilator (ASV).
ASV's are expensive. It's seems common to require a person to fail at CPAP; then fail on Bilevel; before issuing an ASV.
It's a waste of time, money and medical resources. IMHO: It's time to overhaul the sleep apnea "system".

It's not the doctors (although a few seem to be not so swift). It's mainly driven by insurance who will spend thousands to save hundreds.

You have to become your own advocate for health. This forum is the place to learn. Then you will know what to ask for in dealing with a system that's designed to make your life difficult.

[jrwill228]

Thanks for the reply.

Actually, the insurance company is the only one who has even come close to being helpful....

Kinda sucks, but I guess that's the way it is....

[robysue]

Was on APAP some 10 years ago (discontinued) and have now since wound up going to ENT for issues I won't go into (allergy stuff)... he is apparently a "board certified sleep apnea md" or whatever its called and "suggested" that with the symptoms I am having, a sleep study would be in order.
Had the first sleep study done and was dx'ed with severe sleep apnea (mostly central sleep apnea).  So I went to the second sleep study. They recommended a setting of CPAP at 8 (which isn't that much),

Get a copy of the results of the diagnostic sleep study, including the summary data and summary graphs, not just the narrative interpretation of the results.

If central sleep apnea is the correct diagnosis, then a CPAP machine is not likely to do you much good since CPAPs don't treat central apnea.  The machines that are FDA approved to treat central sleep apnea are the much, much more expensive ASV and bilevel ST machines.

She was surprised that the rx said fixed pressure at 8 (I guess she expected APAP setting for some reason).  FYI.... it took a month after the second sleep study to get the MD office to send the rx to DME.  I suspect the "nurse" did it and not the MD and she just followed the study notes, but I can't prove this.

IF the tech at the DME saw the results of the diagnostic sleep study AND they included central sleep apnea that would explain why she was surprised at the script being for CPAP @8cm.

And most DMEs do request the doc's office fax the diagnostic sleep study results, with summary data and summary graphs to them along with the official script so that they can be paid by your insurance company.  So it's not unreasonable to think that the DME's tech may have seen the sleep study results ...

So I leave the DME with a DreamStation (with humidifier) with a DreamWare nasal mask and use it for about 3 or 4 nights.  Each morning I wake up, I feel real tired and like I've been beaten while I slept.  I actually feel worse than before I started treatment.  I called the DME and had them pull/download the data from the machine, and I'm apparently still pulling AHI's of 31 or better with multiple CA and OC and hypopneas in the 110+ range.  The RT at the DME said that the machine at this setting was, "completely ineffective", and that I should contact my MD.

All of which is consistent with a diagnosis of severe central sleep apnea, which is not treated by a CPAP machine.

So I went to the MD (where I also get my allergy shots) and told them I needed to talk to someone about getting the pressures adjusted on my machine.  I was told the MD's nurse was at the other office and that she would call me back.  I got a call later that day and I was told that the next available appt for a "CPAP compliance appt" was in about a month.  I reminded them that the current setting was "completely ineffective" and needed to be changed to be of any use.  They still insisted the next appt was in a month.

You need to fire this MD.  But get your sleep study results first. You need a board certified sleep doctor, and given the number of central apneas your machine is reporting, you need a sleep doc whose certification comes through neurology rather than pulmnology or ENT.

I called the DME back and it was "suggested" I find an MD that had more experience with CPAP and sleep apnea patients and could understand what I was saying to them. 

Your DME is giving you good advice, but I would add that you need a doc who is experienced with treating central sleep apnea rather than the much more common obstructive sleep apnea.

So here I sit with a machine that is doing me no good even if I use it, that the insurance will pull if I don't use it for at least 21 days a month - EVEN AFTER THEY WERE TOLD that the setting were ineffective.

So even if I get another md, I have to get another authorization and I have to turn this equipment back in and get new equipment.

Am I missing something here or is this the normal way these doctors operate?  I'm getting absolutely no assistance from the DME company or the MD office.

You are not missing something, but you do have a doctor who seems to be totally unfamiliar with central sleep apnea.

The MD's office where your problem lies: Until or unless the current sleep doc is willing to see you and discuss changing the machine to an ASV or a bilevel-ST, your problem is not likely to get any better. CPAP is NOT effective at treating central sleep apnea and that's what you seem to have.

And until that happens the DME's hands are tied: They cannot change the settings on your machine or swap your machine out for a more reasonable machine (i.e. an ASV) without a script written by the doctor's office. Your DME is being better than most by being honest when it tells you that you need a new doctor, one who actually knows the difference between central sleep apnea and the much more common obstructive sleep apnea.

Any suggestions other than find another MD?  I've been dealing with this "disease" for months and I am so very tired of it and the BS I've had to go through just to get treatment.

Unfortunately treating central sleep apnea (CSA) is more difficult than treating the much more common obstructive sleep apnea (OSA).  Treating OSA is a pretty simple matter: Figure out a pressure setting (or pressure range) that effectively prevents the vast majority of events that is comfortable enough for the patient to be able to sleep at.  And then wait for the patient to get better.   But treating CSA is much more complicated: Too much pressure adds to the CSA problem, so the EPAP and min PS settings have to be set low enough to not make the situation worse. But max PS setting, the max IPAP setting, and the backup breaths per minute (BPM) settings all have to be set just right to make sure that the machine properly steps in and "triggers" the inhalations when you are not breathing on your own and stabilizes your respiration as much as possible, ideally before things get bad enough for the machine to need to trigger breaths for long periods of time. And if there's also an OSA component to the diagnosis, then the EPAP also has to be high enough to prevent the obstructive events while being low enough to minimize problems with triggering central events.  And finally, the people treating CSA have to be cognizant of the fact that many of the Hs their patients experience may be central in nature rather than obstrucitve. And so if there are a lot of residual Hs in treatment, teasing out what settings to tweak is more difficult than simply "increase the min EPAP" which is all an OSA patient needs to know about tweaking treatment to deal with residual Hs.

Best of luck: You're in a difficult situation. And you really do need a better sleep doc.

[jrwill228]

Thanks for the info....

I'm trying to locate a neurologist to accomplish all this.

[robysue]

Thanks for the info....

I'm trying to locate a neurologist to accomplish all this.

One way to try to get seen much faster than the standard "new patient waiting period" is to tell the scheduling person that you'd like to be put on a cancellation list---i.e. if someone cancels their appointment at the last minute, you'd appreciate that cancelled appointment's time slot to be offered to you.

[jrwill228]

[justMongo]

If I may repeat a line from Robysue:
"You need a board certified sleep doctor, and given the number of central apneas your machine is reporting, you need a sleep doc whose certification comes through neurology..."

She's saying you need a certified sleep doctor with a background in neurology.

I have plain vanilla obstructive apnea. My doctor specialized in internal medicine; then became board certified in sleep medicine.

I always look up the CV (curriculum vitae) of any doctor I am considering. (CV = Resume)

[jrwill228]

[Sleepster]

I agree that your original ENT is the problem. Likely his bread and butter is evaluating sleep study results and making recommendations. He likely got yours wrong. Rather than call I would write using the online portal. I always recommend writing less rather than more. Emphasize that without help your life is falling apart and you are separate for help. Ask for a referral to someone who can help you. Once you get a doctor's order for a new machine you exchange your machine with your current DME.