1st follow up with sleep doctor - disappointing

[cpapsue]

I saw my sleep doctor this morning. I went in feeling all proactive about my treatment, proud that I was complying (even though I requested a different machine and mask than what he prescribed - thanks to all of you). I even brought my results for the 1st six days with me since I made a form I can fill in each morning.

He makes a face and doesn't seem to get 'it'. I told him that I changed the equipment so I could see the data each day. He grumbled a bit stating that you really can't rely on the information, he believed that I was complying. I had to tell him that I could see the leak rate, AI, HI, and AHI. Then he says 'Well, since you brought it, let me see your paper". Then he remarks that at least the numbers aren't high. I asked if they aren't reliable numbers, would it possible to use it to see a trend? No real answer.

He didn't have a card reader for my Resmed (so who does read it - except us). I asked if you don't look at the numbers how do you know how I'm doing? He says, we talk, and I ask you how you feel. It seems to me that if looking at numbers is how we are diagnosed, then - isn't looking at numbers the way to follow your progress?

Is this the type of follow-up treatment we get? I mean, is that it? Next appt is 8 wks.

[imsleepynomore8]

Are you sure you want to waste your money on this doc. Seems as though you have gained more info from this web site than your doc is willing to learn; if your need to see doc is for insurance compliance; see if you can find another doc or therapist to help that your insurance covers ;otherwise if continuing to go to doc is for insurance compliance only ;just tell him how you are doing and smile a little mystery may prompt his interest.KEEP ON CHECKING THIS SITE FOR HELP

[Slinky]

Yep, what you experienced was pretty much the norm. *sigh* I recently had a sleep doctor "expound" at quite some length on why fully data capable xPAP data is not as accurate as an in-lab PSG. Duh! Like we don't know that? But isn't this xPAP data better than by guess and by gosh??? He went on to other, "more important" matters. *sigh* Its discouraging but, hey, no one has a more vested interest in your heath care and xPAP therapy than you do!!! What's that Latin saying ?? "Illegitimae non carborundum" or something like that.

[boston]

at least you got a follow up appointment. all i got was a referal to a sleep study, went in for that, 2 weeks later got a call from a DME saying come get your stuff, thats it. if it wasnt for this forum, id have quit by now, im sure of that. with the help of the members here, my lcd shows my avg. AHI is now 0.6. i dont know how reliable the lcd is, but before it was showing 5-10 AHI, so I know 0.6 is definitely an improvement, at least im headed in the right direction now. if i were you, id post all your problems here, and skip the doctor unless you need to go for something else also. Rested Gal and Wulfman know more than the stupid docs or DME's do.

[Debjax]

Once again, I read these posts and realize how blessed I got with my providers. My sleep doc not only read my card, he showed me my numbers and explained them to me. We spent probably 30 minutes or so discussing my sleep and other habits, and he has scheduled me for followup studies. I will have to take my machine with me to each visit, so he can read the card and reprogram the machine he sees a need. I will also be sending my card periodically to my RT who will communicate the numbers to him.

How did I get this lucky?

[DoriC]

My husband never saw any sleep Dr for a followup after his sleep study, their office just faxed an RX to the DME for a basic cpap machine set at 13 and FF mask. Had no idea about what anything meant. Thanks to this forum, our primary Dr was quite willing to fax an RX to the DME for exactly what machine and mask we wanted. Still thinking that we should see a "specialist" and not do this on our own, I made an appt for hubby with the pulmonologist who treated my asthma a few years ago and has Sleep Apnea posters and literature all over his office. He was "delighted" that I brought copies of the first month's Encore Reports since his card reader is kept "in his other office". He spent most of our visit poring over the reports like he'd never seen one before. When I told him I had been changing the settings with this forum's advice, he said "great, keep up the good work and I'll see you in 3 months". Needless to say, I will cancel our Feb appt unless he'd like another lesson in interpreting Encore Reports or how to change settings! Boy, I never thought I'd get to be such a smart aleck on this topic! And may I second your opinion that some of the Pros here know more about sleep apnea than most professionals out there. We would have given up long ago if it weren't for this forum and the patience and guidance shown to us. We still have a ways to go but we don't feel so lost anymore.

[lost in chicago]

Once again, I read these posts and realize how blessed I got with my providers. My sleep doc not only read my card, he showed me my numbers and explained them to me. We spent probably 30 minutes or so discussing my sleep and other habits, and he has scheduled me for followup studies. I will have to take my machine with me to each visit, so he can read the card and reprogram the machine he sees a need. I will also be sending my card periodically to my RT who will communicate the numbers to him.

How did I get this lucky?

Hey Debjax - that doctor wouldn't happen to be in the Chicago area, would he?

[MrSandman]

Oh Boy! What a visit it was... This study was better than last - AHI=51 No PLM . Oxy. desats to 78%. All fixed so they say at 15 with Cflex of 3 and humidification and chin strap with Swift Lt. Only 4 centrals at 15 and nothing else. The Dr. visit was a disaster. She said I really was OCD when I brought up all my concerns about the VB% and the fact that I get no where near the results in my data that the study shows. She said nobody cares about VB% and it has not been shown to mean anything and she has studied with the best even at Harvard and NOBODY looks at or cares about VB%. She said it is all due to my leak issues. She is very knowledgable for sure about sleep but I didn't like her attitude to let her worry about numbers. I am torn though between agreeing with her and not. She said she gets others like me usually Engineers and Programmers that bring in stacks of reports and it is usually useless. She said there is a point where one worries too much about the data.

I got my balls back out of her hand and tried once again by telling her I take exception to her suggesting that being concerned with my treatment and monitoring the data is some form of OCD. I asked her who is going to monitor my treatment when I am not to see her again for several months. She said to call if I have issues. I asked if I could have a copy of my report and she got short with me and said she could mail it and I said I figured she could just give it to me. She said she hasn't dictated it yet and I said,my sleep report?,and she said oh she could get that for me. I don't know what report she thought I meant. I got a single page copy but didn't feel like arguing anymore. I will get the entire report. They made me sign a paper releasing the single page to myself. Seemed stupid.

They put me in a booth and gave me breathing tests and she said all of them were above average and my lung function is excellent. They set me up with a small local DME to help me fix the leak issues-I think this will be good instead of buying many masks and trying them. She also referred me to a dentist that makes a modified bite device that has rubber bands in order to keep your mouth shut. She said it usually runs $500.

But overall I feel the updated study was a complete waste of money and I learned nothing I didn't already know. I feel the Dr. visit was a waste except for the lung testing. The DME may be the best thing to come out of it.

She said it sounded like people on this site are practicing medicine without a license and when I told her about SAGs posting concerning VB and what he said he was working on she said it sounds like he is plagiarizing other peoples work in order to sound more important than he is.

[Slinky]

Sounds like she has a real ego problem. SAG is one savvy guy and knows his business.

[Bluebonnet_Gal]

Once again, I read these posts and realize how blessed I got with my providers. My sleep doc not only read my card, he showed me my numbers and explained them to me. We spent probably 30 minutes or so discussing my sleep and other habits, and he has scheduled me for followup studies. I will have to take my machine with me to each visit, so he can read the card and reprogram the machine he sees a need. I will also be sending my card periodically to my RT who will communicate the numbers to him.

How did I get this lucky?

Hey Debjax - that doctor wouldn't happen to be in the Chicago area, would he?

How about in the Central Texas Area???

[Debjax]

Hey Debjax - that doctor wouldn't happen to be in the Chicago area, would he?

No, we're in Florida....hit about 75 degrees today

[roster]

.......

Is this the type of follow-up treatment we get? I mean, is that it? .

Sue,

That is it. You are learning quickly.

IMO and experience, monitoring and optimizing treatment is do-it-yourself with help from this forum.

Do you really want to pay that damn doctor your hard earned copay money every eight weeks?

Sleep doctors are needed for a prescription for a machine. Beyond that?

[Bluebonnet_Gal]

No, we're in Florida....hit about 75 degrees today

Was in the 40s here in Central Texas yesterday, 60s today and 70s tomorrow. Was over 80 last Sat and will be in the 50s by next Sat. We sometimes have crazy whether here in winter, but over all, relatively mild.

[MrSandman]

Sounds like she has a real ego problem. SAG is one savvy guy and knows his business.

I don't disagree. Considering I had an almost perfect leak line last night and a VB% in the mid to upper 40's I don't think leak is the cause of VB%. I solved the problem though and ordered a Intellipap Auto and S8 II with H4i ( Just need to find what software and card reader I need and a cheap price) - wanted to try both - what price is life worth,no more VB% and I can monitor "mouth puffs" with the intellipap - should be interesting.

[Shilohcane]

I was only allowed to go see my regular GP doctor and the sleep doctor diagnosed me from my test results. Slinky and a few others on this board taught me everything I need to know. The trick is getting the best mask for you.