Effectiveness of the doctor

I have been using CPAP for 1.5 years and have my third visit with my "sleep doctor" this week. The last three visits have been complete rubbish and I'm afraid this one will be much the same. See, he only asks one question, "how do you think the therapy is working for you?" My answer is always the same, "I don't think it is."

I feel so dead tired my eyes burn. I'm back to having to take a nap in the middle of the day to function. I use my machine faithfully but can only stand it about 5-hours a night.

Besides my feelings and observations shouldn't there be more the doctor can do to figure out what is happening to me during the night?

Thanks.
~Jer

There is no mystery if one has a data capable machine.. and the software .

The problem lies in your dependence on a doctor. OSA is treated by the person having the condition (with assistance from the medical profession).

YOU have to take control of your treatment.

As Brenda suggested, you need a machine that provides useful data and then you need to monitor that data to determine what course you need to take to make your treatment work correctly.

You need to figure out how to stand using your machine all night ... not just 5 hours.

Unfortunately the sleep doc is clueless. Your machine is at the bottom of the barrel and doesn't provide any useful data except compliance. The doctor has NO way of knowing by the data what maybe happening. About all he CAN do is ask you how your therapy is going. BUT he should listen to you and try to at least help.

I am NOT a doctor or a medical professional but I think I would try to adjust my pressure a little at a time and see what kind of results I was having. Come back and tell us at what pressure you are on now and someone will probably help you out with the changes.

If you do decide to change your change only that one thing and wait a week to give it time to see if it is working. If another change needs to be done then do it and wait a week.

Good luck.

I figured this was the case. I've been reading a lot about APAP and home titration. It sounds as if it would be in my best interest to request a better machine and as pointed out, learn how to take an active role in my treatment.

Thanks. That is what I needed to hear.

Unfortunately, your insurance most likely won't pay for a new CPAP for you just 17 months into therapy.

Since you have this appointment already set up I'd be inclined to march in and just tell the doctor, this therapy is NOT working. You may be satisifed but "I" am NOT. I would like you to order a one month loan of an autoPAP w//heated humidifier AND a download of the data once a week during that month w/a therapy change based on that one week of data to try for the next week UNTIL we find out WHAT therapy settings and mask, etc. I really DO NEED to make CPAP therapy work for me. If the sleep doctor isn't "compliant" w/your FIRM, DIPLOMATIC request. Dump him. Your family doctor can order the same instead.

And if that is necessary I'd also provide this sleep doctor w/a written request for not only his dictated results (1-2 pages each) but also the full scored data summary and condensed graphs (5+ pages each) from both your sleep evaluation and titration as well as of your equipment order (script). (Be sure to keep a copy of your written request).

Good luck!

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CPAPopedia Keywords Contained In This Post (Click For Definition): humidifier, Titration, CPAP

jmaziarz wrote:Besides my feelings and observations shouldn't there be more the doctor can do to figure out what is happening to me during the night?

Well YES there should. The doc can order a data capable machine and download by the DME.

That will give you time to buy the tools you need (software & reader) and find yourself a real board certified sleep doctor. Apparently this doc does sleep on the side. If this doc does NOT help you, why do you still go there?

How are you feeling? Is that worth $250? Ok, send it to me then!!!

I am going to see mine tonight.

Good Luck,
GumbyCT

Slinky wrote:Unfortunately, your insurance most likely won't pay for a new CPAP for you just 17 months into therapy.

I just called my insurance company to see if I might be covered for an upgrade. I was also told my DME benefits are $2500/yr. The rep. said he would do some research and get back to me.

Slinky wrote: Since you have this appointment already set up I'd be inclined to march in and just tell the doctor, this therapy is NOT working. You may be satisifed but "I" am NOT. I would like you to order a one month loan of an autoPAP w//heated humidifier AND a download of the data once a week during that month w/a therapy change based on that one week of data to try for the next week UNTIL we find out WHAT therapy settings and mask, etc. I really DO NEED to make CPAP therapy work for me. If the sleep doctor isn't "compliant" w/your FIRM, DIPLOMATIC request. Dump him. Your family doctor can order the same instead.

You are absolutely right. This therapy is NOT working for me and I DO NEED to make it work. I understand what autoPAP is but how does the download of the data work? Would I suggest a weekly visit so the doctor can get the data off the machine and analyze it?

Get a M-Series AFLEX machine with integrated humidifier, a card reader, and the software Respironics sells that works with that machine. These tools are what you need. Get them any way you can....through the insurance...out of your own pocket....whatever! CPAP.com has the info on their website. Take charge of your own therapy by learning all about the necessary equipment....and how to use it. Depending you your doctors to do that work for you is a recipe for death. To them, we're just "livestock" to be milked and harvested.

Gerald

GumbyCT wrote: That will give you time to buy the tools you need (software & reader) and find yourself a real board certified sleep doctor. Apparently this doc does sleep on the side. If this doc does NOT help you, why do you still go there?

This sleep doctor was referred by my primary care physician (PCP). I am not sure if he is board certified (ABSM?) since his primary specialty is pulmonology.

Given what seems like a lack of interest in my therapy I think it may be time to find another doctor.

Nah. The DME supplier can do the download, FAX it to the doctor and he can contact them w/the changes. Quite likely the doctor's sleep lab's RPSGT will best understand what changes may need to be made from the data.

More likely the DME can do the download, and if their RT is any good, the RT can CALL the doctor and SUGGEST the needed changes. The good ones know more about the capabilities and understanding of the data than a lot of the sleep "doctors" do.

Or, maybe, the doctor's sleep lab will have the software to do the download, eliminating one step. You should NOT have to have an appt w/the sleep doc each time for the therapy changes needed - except to deliver the data card to whoever is gonna do the download.

AND BE SURE TO REQUEST AND GET A COPY OF EACH DOWNLOAD!

The more I read and get suggestions (thank you) the more I feel I am just another revenue stream for the doctor. How does one go about finding a quality doctor for this type of therapy (it is obvious my PCP is clueless too)?

This is an example of why most of us have taken control over our own therapy.

Doctors only have you come back for regular visits so they can continue to bill your insurance for the office visit, they don't really care how you feel and/or if therapy is working. If they happen to ask for your SmartCard that is only to show compliance and because insurance requires it for continued coverage of the disorder.

They really only care that you come back in the office and sit for several hours so they can continue to bill insurance for that visit. Get enough patients doing the same you have a steady revenue stream coming in while having to do very little.
Some are concerned about your well being, others just want you to come back so they can continue to bill charges.

This is where you pull out your original PSG's (don't have them? why not?) and you say here is where my sleep was shown destroyed by OSA, you recommended CPAP therapy, as far as I know that OSA is now being addressed by CPAP yet you remain tired and/or therapy has no impact on daytime fatigue.

Some questions you might want to ask the doctor are:

With the obstructive apnea aspect obviously being treated and being ruled out by CPAP, WHY am I still tired?

WHAT on that PSG report are we NOT addressing here?

What possibly may be seen destroying my Sleep Architecture that is NOT being addressed by CPAP therapy to leave me so fatigued?

Are there any residual microarousals or parasomnias seen on the PSG report we may have missed?

Are there any PLMD or RLS seen?

Are those being addressed?

Do I have hocus pocus UARS?

WHAT is the next step here in resolving this cause it obviously isn't working?

If their only answer is you need another PSG, then I would question the validity of that, the answers needed should be on your original PSG's. If they cannot figure out the first PSG's what makes them think that another would give them the answer? Do you want to continue to spin your wheels with this doctor or find a new one and get the PSG there?

At this point, if you get that deer in the headlights look, know that is the time to gather your medical records from that doctor and find another, but don't leave until you have complete copies of your last PSG's for the new doctor.

jmaziarz wrote:This sleep doctor was referred by my primary care physician (PCP). I am not sure if he is board certified (ABSM?) since his primary specialty is pulmonology.

Given what seems like a lack of interest in my therapy I think it may be time to find another doctor.

Understand that ALL board certified sleep specialists completed their MD degree in some "specialty" other than "sleep" and sleep is their subspecialty. Sleep is a VERY NEW field of medicine. Most were originally internists, then pulmonologists or are neurologists w/sleep as their subspecialty. But it IS fast becoming a "cash cow" subspecialty and a lot are jumping on the bandwagon w/little actual interest except in the easy money.

Still to save time give some serious thought to my suggestion whilst you are searching for a GOOD sleep specialist.

I recently found w/the new sleep specialist my sleep lab has taken on, that these sleep doctors and labs are just so used to their patients being provided w/a bare bones compliance data only CPAPs that they don't expect or are even aware that some patients actually do have data available (other than compliance data) to assist w/detecting any therapy problems.

He actually expressed an interest in the downloaded data I had elected to bring w/me. Unfortunately, assuming he wasn't interested I presented it at the same time I told him the therapy change I was considering and why. He surprised me by looking the data over and agreeing that what I was thinking of doing might be worthwhile. To go ahead and see what a week's worth of data indicated.

Snoredog wrote: They really only care that you come back in the office and sit for several hours so they can continue to bill insurance for that visit.

Several hours? I get 15 minutes per visit. Tops.

Snoredog wrote: This is where you pull out your original PSG's (don't have them? why not?)

Nope. Don't have them. I was told that all I needed was the explanation of the results and that patients didn't get copies.

Snoredog wrote: If their only answer is you need another PSG, then I would question the validity of that, the answers needed should be on your original PSG's. If they cannot figure out the first PSG's what makes them think that another would give them the answer?

I've already been through this once. I asked about 9-months ago why this therapy doesn't seem to be working. I was told, "for some people it can take years before any results are noticeable." A second sleep study was done and the only tangible result I could get out of the doctor was a script to increase my pressure from 8 to 12. Again, no copies of PSG.