My auto BPAP cured me of all apnea events?

What I'm about to write might amaze a lot of people..........I know that it astounded me and not in a good way.

Let me just write it out the best I can, it involves my doctor reading my smart card and telling me some things I can't believe, showing me some other things in my report which i know to not be true and this happened early yesterday afternoon, I then went to work. I may not remember everything that happened as I tend to block a lot of outrageous things but I'll try to explain what i can and the rest will come back to me.

Doctor's assistant takes my smart card, doctor comes in the room about twenty minutes later with my report. It was only a compliance report............I had a request I was asking him before I saw the report, a request for my complete titration study (as advised by members of another apnea forum) with apnea breakdowns included (how many apneas when I sleep on my back, how many apneas during REM sleep etc) but what the doctor told me about my new smart card report made me forget my request for the complete titration report.

Ok, first he congratulated me on only missing one night. I then told him (and my reading my 7 day and 30 day averages each night verifies it) that I've missed several nights..........He just pooh poohed it. So then I asked him what the breakdown means in terms of my AHI's or apnea events...........my reading my averages shows I'm averaging around 5 an hour and the card or screen display on my Respironics Auto BiPap might not be too accurate but he tells me that I have no apneas at all because I use the machine!

Excuse me but that either is pure "how can THAT be???????????????" or it means that I don't have apnea at all.

I have never heard of anyone having no apneas on a nightly basis because he uses his machine.

Have you? Please let me know.

So I expressed my incredulousness and in my quiet, gentlemanly way but of course my disbelief quickly got under his skin.

I remember a couple of things, I remember after my titration study that one of the techs told me when i woke up that I probably didn't have apnea.............but then the doctor gave me his report that I had moderately severe apnea (an AHI of around 21) and that all apneas stopped at 19.........Another thing i remember was that one of the doctor's aides told me on the phone that my titration number was 10 and then she later said it was 12........and another thing was that the doctor was supposed to be ordering a much better machine for me but then the story was changed that I was getting a Respironics Auto BPAP which was what I did wind up getting.

One question i asked the doctor today, I think it was an intelligent question: If I were titrated and found to have apnea while wearing a mask and using a machine then why does the machine and mask now stop all apneas? His answer was that they tried several masks on me and several different CPAP until they found what worked............that did make sense but then he told me that the only reason I have an Auto BPAP now is because "the CPAP I first had didn't work for me and i was calling him up everyday and complaining to him so they exchanged it for my present BPAP".....Never happened. I never had any other machine but my present BPAP....doctor apologized then for maybe getting that part wrong but his answer as well as his telling me that my machine stops all my apneas makes me wonder what is going on with that doctor.

I have lots more to say but I think I'd better rest now.

Hoping for some feedback, some insight, some advice.

Riv,

I love your story - what a switched on OSA doc
Perhaps he needs to up his own pressure to get his memory & cohesion back

Cheers

DSM

You may "love" my "story" but I'm upset, worried and wondering if I even have apnea.

What do you mean by the doctor being "switched on"?

Riv,

The switched on doc was humor (switched off might have been a simpler comment )

Cheers

DSM

sounds like fraud to me. Doctors don't get paid if you don't have OSA. I'd call his office and tell them you are coming by to get the copy of your PSG that you had asked for. If the doesn't provide it you are calling your Insurance company for investigation for fraud.

Guarantee you will receive a copy of your PSG. You can also go by the sleep lab and request the copy, doing it in person is the best way.

By law, your doctor is supposed to supply you a copy of all test results so that you can take those test results for a 2nd opinion, alternate therapies etc. and you don't have to have the tests repeated.

There is more milking of the system than you realize.

The doctor voluntarily asked me to go down the street to his sleep lab and sign a release form in order to receive all my test results which I did. He called up the lab, told them i was coming and the woman there said she'd mail me "all" (let's hope) my results tomorrow.

Sounds good but i can't trust that doctor.

He also mentioned that my latest smart card results would "stand up in any court of law" although I never even thought about nor mentioned suing.

That last comments sounds pretty fishy to me... If I were you I'd find another sleep doc ASAP. Is your doc accredited, certified, etc?
You also ask for a copy of the smart card results that they downloaded.

If the letter "never arrives", then some have suggested to send the doc a certified letter, and a polite but firm letter with the gist of Snoredog's comments. And start calling the authorities...

Also note that by law they are obliged to give you your personal data, and you should NOT have to sign any release form, as far as I know! Make sure you read the fine print on anything you sign!

Riv wrote: He also mentioned that my latest smart card results would "stand up in any court of law" although I never even thought about nor mentioned suing.

That would make me wonder if he's been sued so many times, he just expects it.

I should have read the fine print on the release form before i signed it. You're right! But I was upset just as the doctor knew I'd be.

He made his nasty face when i started asking him questions about his claim that the machine stopped all my apneas and I expressed that it was hard to believe I had no apneas, then he said that I kept repeating the same things, that i was the only patient he had who acted like me, that it was my "anxiety" making me feel the way i was feeling.

I did look him up, the doctor is well regarded, accredited, certified, he teaches new doctors, owns the sleep lab, has never been sued.

.

I'm not in Missouri but it sounds like my doctor has a clone there. I completely feel and relate to what you are saying.

I didn't know any other doctor could be like the one I have.

Someday all of us will meet God, He will ask each of us questions which may be hard to face but will have to be answered honestly. I don't know how well I'll do when I come face to face with Him but a lot of arrogant doctors and other people (from all backgrounds in life) will really be in trouble when they have to defend their abuse, dishonesty, inconsideration, arrogance..........I've been far from perfect myself.

It isn't easy to find a new doctor. Pulmonary doesn't always mean apnea doctor and some apnea doctors aren't set to read my machine. Once I tried to find a new doctor (I'm trying again) and it turned out that the new doctor was trained by my doctor (the sign on the door of my present doctor says "faculty practice") and thought my doctor btw was a nice guy.

I called a new doctor up...........got an answer machine (I always do).............listened..pressed 1..got a live voice, said i was looking for an apnea doctor, she said hold on, transferred me, I told next voice that answered that i was looking to find an apnea doctor, next voice said hold the line, transferred me, next voice comes on? The same, she transferred me...............finally my phone got disconnected.

My doctor's reply yesterday (as he always says) "You're free to get another doctor if you don't like what I'm saying". but it isn't easy, especially when your doctor is highly respected by his peers as he knows how to play when it counts and knows that I don't count, I'm just some completely alone widower who comes off anxious while he's credible and high status.

Hi Riv, I'm really sorry to hear your troubles with this doc. That is not at all pleasant. They are supposed to be there to TREAT and HELP us, not have us waste our energy in fighting THEM!
One thing you might want to do for next time - take some support with you (family, friend, colleague, ...) and be persistent.
Another suggestion to scout around for a new doc on this board - just post and ask if anyone knows of a good doc in the neighborhood of city xyz.
I hope it gets better for you! In the meantime, please feel free to vent further here on this board!

All good advice, Echo. Thank you.

Riv wrote:The doctor voluntarily asked me to go down the street to his sleep lab and sign a release form in order to receive all my test results which I did. He called up the lab, told them i was coming and the woman there said she'd mail me "all" (let's hope) my results tomorrow.

Sounds good but i can't trust that doctor.

He also mentioned that my latest smart card results would "stand up in any court of law" although I never even thought about nor mentioned suing.

Hi Riv,

I also called the sleep lab to find out their hours so I could come in from out of town to pick up my sleep lab reports. They knew I was coming in the next morning. When I got there the lab was locked up. I went to the doctors office down the hall and let them know I had arranged to pick up my sleep lab reports this morning and told them since I have come from out of town I will just wait while they copy them.

As for your readings, they can vary. My readings can be very high one day then the next day at the same pressure they can be extremely low or in between.

He may have just got one of the low days or just an hour's reading to try to convince you your apneas were cured. My apneas increased from very mild to moderate and severe some nights. In fact, I didn't know that my original sleep report said I only had 8 apneas and was mild. The dme upon looking at my first month report said I was severe.I didn't find out that I had been very mild until I got a copy of my sleep study. For me, the cpap therapy made me much worse. I think I am in the 15% that can't tolerate cpap.

I also had problems with the so-called sleep doctor (really a moonlighting pyshciatrist). He saw my first month report and the first three months of reports all proving cpap made my condition much worse. These first three months of reports were all on prescribed pressure. Later, after I had changed my settings and after I got a machine (Sandman) that detects CA (cardiac oscillations) and cnt hypopneas and showed him that I was having centrals he didn't care. He said the machine can't detect centrals and he didn't want to even discuss them. The registered tech who works at the lab had asked me if I had a machine that could detect centrals when I called him earlier. At least he is more up-to-date on machines. This doctor I saw was more interested in having me try on at least four different masks from their dme, not the one down the street where I got my equipment. He told me he would see if I could loan one for about 9 days and then try another until I have tried at least 4 different ones. I told him the one I have is very good and I can't afford to be paying for loaners. I also have plm. On my intial study I had 167 plms. It was the coldest day of the year and my skin was very dry and itchy as I was told I couldn't wear lotion. I was going crazy all night with itching. On the titration study, a month later the plms were few. Now, this doctor is trying to tell me that my biggest problem is the plms (periodic leg movements). I saw my reports and showed him my reports and asked him to compare the lab reports to the first three months of therapy data at his prescribed pressure and see how cpap has made me worse. This is not to even mention the centrals.

Another thing is the machine you are using. The ResMed S8 Elite is a nice cpap and the therapy software is nice, but it doesn't detect centrals. I am thinking that some of my apneas were central before I started on the Sandman and that probably many of the hypopneas were too. I just didn't have the right kind on machine to detect them. Maybe they were there from the first month of therapy? I don't know.

Have you thought that the reason cpap machine wasn't right one for you may be because of causing centrals. Maybe that's why they gave you a BiPap machine? You really need to get those reports as you are entitled to them and you need to see if there are any centrals on the report.

I wish we could trust everyone. I would love that but I am finding out the hard way too many professionals don't care. I do believe they are not in the majority, though and that we just seem to attract them. Maybe it is because it is easy money as a moonlighting job that the ones who "supposedly took an oath to do no harm" figure that doesn't apply to sleep apnea patients. So sad.

I ended up walking out on this guy because I felt he didn't care about my concern regarding the nature of my fluctuating reports and now centrals. I have never walked out on anyone before and didn't plan to do it to him. He was also "Me authority -you do not question me" type. I prefer and respect humble professionals and have a problem with arrogance.

I have never heard of anyone being cured by the machine. See your family doctor and explain to him your concerns. In Canada, you have to wait another year to have another sleep study done and youo have it in writng that you don't need to see the doctor for another year. I don't know how long you have to wait in the States. You should get another one done as soon as you are able to and get your sleep lab reports. Just go in during their hours they are open or to the doctor's office and tell them you will wait while they copy your intitial study and titration study and any other reports. It probably would be good to bring a friend or family member with you as you will have a witness, if they refuse or make an excuse. I'm sure they have a copy machine, so no excuse.

Let us know when you get a hold of your reports.

Anne