Who do I contact for what, and do i need a sleep specialist?

[larry63]

Hey everyone, I feel like I'm being tossed around like an American football. My problem is that I have no idea who to contact for any specific question.

My players so far:

- My primary phisichian (as they call it in the US - the one who you first see who will refer you to specialists.
- The Ear/Nose/Throat doctor, who referred me to a sleep study. (I profusely apologize for not knowing the name of this specialization). However she specializes naturally more in physical ENT matters, than CPAP (she's a surgeon). She ethically referred me first to a sleep study and to see if CPAP treatment would work, because that is the "gold standard" in OSA treatment.
so she doesn't know many specifics about specific sleep apnea machinery and can't answer specific technical questions as such.
- The contact at the lab where I had my sleep study done. I know that they have an actual MD look over the generated report and provide a summary, because the ENT gave me a copy of both the reviews summary and the raw report data. But I have never met this MD and I don't know his name, and I have a feeling he probably doesn't take appointments, but I suppose I could ask the sleep lab.
- The DME, which although does sell the pumps and masks, does not seem to know much about them. The DME is nmy case is New York Home Health Care Equipment. It seems that because of the current OSA craze, they aren't really able to keep up with all the technical aspects of fitting a mask, diagnosing CPAP leaks, etc. They don''t have a respiratory technician on their staff AFAIK. They did sent a tech over to drop of a F/P SpeepStyle 244 and a Resmed Swift FX, and he did spend a few minutes telling what parts to clean and with what and how often, and even let me put the mask on with the machine running, while I was sitting down. But he didn't seem to know that the nasal pillows were not supposed to be stuffed completely inside my nose, even though it was obvious that I was doing that.

So my question, is who to I ask for help in a given situation for given issue. I should first say that at the moment the chain of referral was:
Primary Physician -> ENT specialist -> Associated Sleep Study LAB -> Associated DME. I know that the ENT always refers patients to a certain group of sleep centers in the Putnam and Westchester county regions of New York. And likewise, this group tends to deal with "New York Home Health Care Equipment", although that might be only be because that DME is signed up with my health insurance (Oxford).

What I'm missing in my opinion, is a respiratory therapist and/or a sleep specialized MD.

How should I proceed do do you think (I'm the US). The DME does not list a respiratory therapist on their list of phone numbers - only a technician.
And although I must assume that the sleep-lab group in my area must have some MD who reviews the raw data and compiles a summary which he or she sends to the referring physician.

I think my plan would be possibly to either get an appointment with an RT (but where would I find one)? or else look in my health coverage plan for a sleep physician who particapates in my insurance plan, and ask my primary physician for a referral. But that really only makes sense if I suspect something other than OSA as the cause of my fatigue (but then again how do I know if there's not other causes - certainly CPAP is not making me feel any better after two months of therapy).

What about more technical questions (why is my HP 244 sleepstyle showing leakages between 40 and 80 - should I try another mask)? That sounds more like a question for a respiritory therapist. But How do I find one?

I could ask my primary dr. these questions, but I don't know if he would know the answers and I thought it might be faster to ask here rather than to make an appointment just to ask these questions and have to wait 2 to 5 hours in the waiting room.

Actually, after writing all that out, I think I'm inclined to try to call my primary MD, and as for a referral to a sleep specialist. I would mean another month or two delay while I struggle with the equipment, but in the long run that's probably my best bet, right? At least then my sleep MD would be the primary contact for whatever questions I have, and if I have specific technical questions about leakage rates or software issues, than he would be the one that could be in contact with the xPAP people and could ask them for me. And plus he could tell me if the reason I'm feeling worse is because of some other issue unrelated to CPAP treatment.

Think I'm on the right track?

Thanks in advance

LT

[dtsm]

1. You need to establish 'relationship' with the sleep center - preferably one of the nurses that can help you with machine or adjustments with mask.
2. You need to consider changing DME, if you're in tri-state area, my DME is located in Waterbury CT and they are excellent; they have therapists on staff to help. PM for details.
3. And of course, we're here

[robysue]

Actually, after writing all that out, I think I'm inclined to try to call my primary MD, and as for a referral to a sleep specialist.

I think that's a very good idea myself. That way you would have a doctor's office and staff who could answer some of your questions.

You might also want to call your insurance company and ask them for a list of DMEs that they work with. It sounds like you're in a tough spot with your DME not having an RT and not having anybody who can really answer your questions. I'm lucky enough to have found a DME that specializes in CPAP equipment. Hence they do have the proper people to talk to about technical issues such as mask fitting.

As for your leak rate: You mask's owner's manual should have a graph or a table somewhere in it that lists the expected leak rate at various pressures. All masks have an inherent leak rate due to the need to exhaust out old air to minimize rebreathing. The particular rate varies from mask to mask and from pressure to pressure. It's my understanding that on many CPAP machines, including yours, the leak rate the machine reports includes the mask's intended leak rate plus any additional leaking due to real leaks. So to understand your leak rate numbers you need to subtract the mask's exhaust flow leak rate for your prescribed pressure from the leak rate number.

At least one line of machines (the Resmed S9's) code in estimated average exhaust leaks for the various styles of (Resmed) masks at various pressures; and these machines do the subtraction for the user. Hence the folks with S9's can and do talk about getting down to 0.0 being recorded as the leak rate. But I believe that the S9's are the exception.

[Breathe Jimbo]

I would ask the lab that did your sleep study whether you can make an appointment with them to have your mask properly fitted, explaining that the DME did not have anyone able to do that for you. If that does not resolve the fitting problem, I would call your insurance company to explain the situation and ask whether they can refer you to an RT. Does your insurance company have a nurse line you can call? That might be available 24/7.

You need a sleep specialist who can monitor your progress and results and make/recommend any necessary changes to your equipment and settings. None of your other doctors are qualified to do that. The referral to a sleep specialist should come from your primary.

You need a copy of your complete sleep study report, including the titration data. That should give you the name of the sleep doctor who interpreted the data from your sleep study. He probably sees patients, but you may need a referral specifically to him before he will see you.

If your initial DME does not have an RT on staff, then I would wonder who set up your machine, whether they were qualified to do so, and whether it was set up correctly. You may want to put these questions directly to the DME.

Don't let the ENT take a knife to you before you see a sleep doctor.

[BlackSpinner]

Plus you have 30 days to take the mask back and try another. Yes you do. No matter what they say.

[Mary Z]

Yes, the RT who works for my DME is my primary support person, besides the Doc. I have more contact with the RT and am quite fortunate to have one who knows XPAP inside out. I have been able to achieve a 0.0 leak rate with a VPAP III ST-A. I believe it's correct because I was on a very high pressure and had to work extensively with the mask to achieve low leak rates. Now my pressures are lower and I'm finding I can actually back off on the tightness of the mask somewhat. I use the FitLife Total Face Mask that I found myself, but my DME was willing to bring various masks by for me to try before I found the one to work with. Some sleep docs have their own technical staff, particulaly if associated with a sleep lab. Good luck. Good, knowledgeable, kind, available support people are invaluable in making a success of CPAP.

[larry63]

Plus you have 30 days to take the mask back and try another. Yes you do. No matter what they say.

Yup, I ran just a little past that deadline unfortunately. Only 30 days in, it seemed unreasonable to me to determine for myself if uiother mask would be better, or if I just had to get used to the one I head. When I called the DME, it was shortly before the 30 days, and when I mentioned the leaks and possible mouth-breathing, there was clearly no way I would agree to exhange my comfy sift FX for a full facial mask without first doing some serious research - and after taping myself, I don't think I am.


Typically, when these USA companies exchange masks, do you actually have to give them the old one back?, or can you keep it? I mean, how can they possibly take a used mask and then sell it off as new? It would be basically amount to replacing the entire thing anyway - considering the ink markers to mark the tightening positions, the inevitable bloods stains from skin conditions, etc....


Where does this 30-day rule come from, can I ask and if you know? What country? I'm in US. Is it a USA insurance law? Does it mean that I can every thirty days, try a different mask, and if I don't like it, I can try another? But you say I have to take the first mask back before I can try another. That would be a bummer if it the second mask is worse. I suppose if the second mask is worse I can just reject it and and keep the first one, but how would
All in all, this is stuff is very complicated, at least in the USA, and even then, I imagine that every insurance company has different guidlines.

[MidnightOwl]

Actually, after writing all that out, I think I'm inclined to try to call my primary MD, and as for a referral to a sleep specialist. I would mean another month or two delay while I struggle with the equipment, but in the long run that's probably my best bet, right? At least then my sleep MD would be the primary contact for whatever questions I have, and if I have specific technical questions about leakage rates or software issues, than he would be the one that could be in contact with the xPAP people and could ask them for me. And plus he could tell me if the reason I'm feeling worse is because of some other issue unrelated to CPAP treatment.

Think I'm on the right track?

Almost. From what you've posted here and on your other threads it doesn't sound like you can afford to delay a couple more months. Were you serious about running into the construction cones or was that just an attempt to describe how awful you feel? Here's what I think I'd do.

I think finding a sleep specialist for the long run is a good idea. I'm not sure that will solve your equipment problems however. Perhaps some sleep centers can but the one one I went to just referred you to DMEs.

You might want to start another thread asking how to find a sleep specialist that does do the things that you want. And ask your doctors. And at local support groups. The NY metropolitan area does give you lots of choices.

While you are waiting for that to happen I would call your DME immediately and tell them you are having problems with the mask and equipment and that you are WORSE than before starting CPAP. There should be an RT available even though you didn't find a phone number for one. In fact, I thought that in NY an RT was required to set up your equipment. RT's don't always know that much about CPAP equipment but it's the place to start. I'd call them Monday morning.

Next, but also on Monday, I'd call either the ENT or your primary doctor and tell whoever you can talk to that you are much worse, that this is urgent, and you need some immediate help. Mention those road cones again. Personally I'd probably call the ENT first unless I had a very good relationship with the primary doctor. She's dealt with this before and she has more leverage with the DME (and the sleep lab) than you do as she is a source of future referrals to them. And I'd be nice to whatever office staff I talked to since they could be the ones that actually have the relationship with the DME and lab.

You can also ask your primary for a referral to a sleep specialist but make it clear that that is for the long term management of your condition and that you need some help now.

I would not spend a lot of time talking to any of them about the leak numbers on your specific machine up front. Your real problem is that you feel worse. It MIGHT be related to those numbers that you don't understand. But if you stress the numbers they may focus on fixing or explaining that instead of fixing you and what do you do if a leak is not the cause?

The rest depends on how involved you want to be in handling stuff yourself.

I'd probably look for a local support group or three. That's a way of finding out about which doctors and DME's in your area that are good or horrible. And you might get to see other masks. I'd consider traveling within the area instead of just staying strictly local too.

Try a different mask. Or several. If you can afford it just buy one instead of waiting for insurance to be willing to pay for another. Keep in mind that masks are much cheaper when bought online however you do have to guess at fit. It might save you money in the long run if you can get your sleepiness under control.

On mask exchange. I don't think there is any law or insurance regulation requiring DME's to exchange masks that dont' work. Some will do it anyway. Other's won't. I've read here about a voluntary program for the DME's where the manufactureres reimburse the DME's for masks returned within 30 days. But even that would have overhead costs for the DME. If you do go shopping for a new DME you should certainly ask them if you can return masks. I've also read here that cpap.com will exchange mail ordered masks for a very hefty surcharge paid at the time of purchase.

Enlist your girlfriend in helping you figure out what's going on at night. You're lucky to have someone who can witness what happens while you're sleeping. And it may make her less frustrated with the situation if there is something she can do to help resolve it.

Get more information about the sleep studies. My lab only sent my referring doctor a one page summary too. But on request I was able to get the more detailed summary and pass that along also. There are lots of posts here of just what to ask for. All sleep apnea is not alike. You really want to know and understand what the study and titration showed about YOU.

Anyway that's what I'd do. The one thing I would NOT do is just ask for a referral and then try to tough it out for a couple more months with things the way they are. Good luck.

Midnightowl

[Slinky]

NOW you are thinking straighter and better. This is your best and most sensible post. You're working your way thru the maze.

Any local DME provider who accepts Medicare MUST have an RRT on staff. They can "supervise" staff under them to do some of the "mundane" work such as mask fitting, etc. and some local DME providers really cut corners on their RRT services and availability.

It is the three major manufacturers, Resmed, Respironics and Fisher & Paykel, that offer the free mask exchange thru those local DME providers who opt to take part in the program. The provider must fill out a form and return the mask that the patient has been unsuccessful with along w/the form to the manufacturer who will then replace that mask.

Call your insurance company and ask them for a list of local DME CPAP providers they are contracted with. Call those providers and see if any of them specialize in just CPAP therapy. Or just Respiratory therapy. Call the various hospital sleep labs to see if they offer apnea support group meetings. The MANHATTAN AWAKE apnea support group if a fantastic group!!!!

http://www.ManhattanAwake.org

That's where you are going to get the best skivvy on good sleep doctors, sleep labs, local DME providers, etc., etc. Look for Dr Steven Y Park in NYC. He's a marvelous doctor w/all facets of apnea therapy.