Follow-up doc appointment angst

[Junebug999]

GRRRRRRR.....this doc is bugging me.

He specifically told me I had no central events during my sleep study or titration study. Then I receive copies of my reports...and guess what? 4 central events!!

Also, report says he recommended CPAP or BIPAP for me. AND....there were quite a few things on both reports that were different than what he told me.

Also, last visit we had decided I would change from cpap to autopap and discussed the range....when I went in this visit he said, "so, you're on CPAP set at 8." I had to advise him I"m autopap now and advise him what the pressure was.....and I informed him how I had ranged in the pressure. WHO is in charge here??? OHHHHH (I AM!!) YAYYYYY! But I'd like for my sleep doc to be a little more on the game...ya know?

Then he also said during the appointment that my 8.5 pressure is HIGH pressure....YES he said that!! He must think I'm stoooopid. And he said that about pressure because of this:

Me: Doc, I need a new type of mask because in a few weeks I'm having some dermatology work done on my forehead and won't be able to wear my Quattro with the forehead piece....blah blah....Here doc, I have for you some information about the Hybrid mask by Innomed. I have checked with people who use hybrids, and this is a preferred mask....(handed him pages from cpap.com) when he just handed back to me saying....

Doc: Well, Junebug, if you need a different mask, then I don't like the hybrid masks or the nasal pillows. I want you to use the EVO full face mask thaqt does not need a forehead support because it's what I USE!!!! ANDDDD Junebug...with your high pressure of 8.5, the nasal pillow hybrid type mask won't work for you, you'll need this EVO mask....blah blah

So, I also had printed out reports from my Devilbiss Intellipap and handed them to him....and guess what. He was looking over the front page...LOOKING and READING all the patient info...you know my name, address, height weight...HE KNOWS ALL THAT CRAP!!

And then looking at the rest of the page he looked at it like he was it was written in latin and he was trying to figure it out. He NEVER looked at the pages past the first page, and those are the pages with the graphs that tell the story about sleeping.....etc. etc...

Very frustrating. Now remember when I went in last time I was wanting to try a different type of mask and he wanted me to try the nasal comfort gel because "that is the mask I use."

Isn't it sort of weird that this doc thinks I will only like masks that HE USES???

I'm starting to feel like appointments with him are a waste of time if I'm feeling well on the hose myself.....

So, I'm going to get the EVO mask...and I think I'll just order the hybrid mask I want from our sponsor.

Plus....this doc has multiple personalities, and I swear I've never been with the same personality twice.

Anyway, thanks for listening....it helps I can come here and you know how I feel...AND please note...I've not even began to rant about my phone convo with the lame DME rep yesterday.....bleah....

[jonquiljo]

Some Dr's are good, some bad, some blah - you seem to have gotten "blah". Most of them never read your chart (at the earliest) until they walk in the door - and you can really bet that he doesn't remember much about you - or possibly even that you are his patient (he just knows that you are because you are sitting in his office). Remember, they see patients all day long and if they aren't paying much attention and don't care - you could be someone else and they wouldn't know the difference.

Most MD's I've even known were burned out by age 45, left medicine, or stayed for the money (and employment) but really weren't into what they did. There are exceptions of course, you just can't expect them to all really be there. It's sad but true.

So when this guy recommends what he uses - its probably because he can remember to always recommend what he uses. If on page 4 of your chart it says about you being switched to APAP - he has to read that far to know - and chances are that he won't read that far. He may have multiple personalities but chances are that he has many moods and doesn't pay much attention to much of anything.

But these guys are useful if they can pay attention long enough to get you what you need. You've got to really direct their attention, though. Sometimes you have to sit there while you make them write out an Rx for a mask or machine. Quite frankly, that's what this board is good for - information. Chances are you aren't going to get more than 30 seconds of it from a Dr. When he read the first page of your report he probably was remembering your basic information for the first time. They just get good at pretending they know you.

So you do what you know you need to do - and don't count on this guy for much of anything brilliant. I see the same thing in many of my Dr's. When they are needed for something like really important thinking and decision making - I get new ones. When they act like this and they give me what I want and need - I learn to live with them (though I don't go back until I need them for something else). Just realize they could be the "bad" ones - the one's that really lead you down the path of no return and tell you that you need surgery when you really don't, etc.

I may sound like a cynic - but I have seen more than my share of "blah" - and even more of "bad". I'm afraid that this guy is only going to get you so far. The rest you will need to do on your own - or find another sleep Dr.

But I definitely hear and feel your frustration. I can easily get far more comprehensive car service and repair than I can get for my body and health.

[Emilia]

Hi Junebug! So sorry you have a doofus doc! If you can, get him to write a generic Rx for "cpap mask of patient's choice." With that, you can upload it to cpap.com and get pretty much any mask you want. If I remember correctly, you bought your machine from cpap.com so you can order any mask you want with that Rx....

[Julie]

I get the feeling he uses "what I use" just to persuade people - and may not use anything at all!

[rosiefrosie]

IF your sleep doctor does have apnea and uses xpap therapy, maybe he should be looking at his numbers, sounds as if he's in a fog.

rosie

[kteague]

I may sound like a cynic - but I have seen more than my share of "blah" - and even more of "bad". I'm afraid that this guy is only going to get you so far. The rest you will need to do on your own - or find another sleep Dr.

Doesn't sound like you're a cynic to me - more like a realist. Seems a fair assessment of things.

Yeah, Junebug, it is unsettling when those you count on to move you forward have to be pulled along. I have a couple doctors that I feel are excellent, but even they have to kinda "catch up" with every visit. Even so, it doesn't take but a quick review for the light to come on and we're back on track. I can't imagine having the volume of information of they process have to stay in any brain. I've started expecting to give any doc an introductory sentence or two (not paragraph) to encapsulate where we are now and what I need from them this visit. I think of times I've showed up with a lengthy list of every little thing I wanted to mention or ask, and I do believe I 've seen their eyes glaze over as soon as I pulled out the list. The difference to me is if a doctor is able to "catch up" and move you forward once the visit gets on track. My GP pulls up my chart on the computer and starts reading as soon as I give him the reason for my visit. Seems the computer has made a review quite efficient for his office. Wish I could say I'm optimistic about your doctor's ability to be of much advanced assistance, but I'm with jonquiljo on your options. Just depends on your needs.

[blusaber]

Hi junebugg

I'm making a generalization here...... But I'm male and have a Female doctor if at all possible seek out a female doc. Mine actually listens has patience and works with me. I'm in Kaiser and my wife had a different doc I got her to switch to mine and she is much happier.

I was in last month and had my last study papers with pressures ect and showed her a sample of a prescription for cpap she wrote me my script and made it good for lifetime

Good luck and never settle for less than you deserve which is the Best!!!

Gary

[DreamLady]

I never discuss masks with the doctor. I tell the PA what I want, she writes the prescription, has the doc sign it, and I pick it up! Follow up visits are much less stressful that way!

[imsleepynomore]

Walk away from this doc he really is NOT interested in helping you . You have already gained more info off this site than he is willing to exhibit. Go to your GP and talk to him .I get so angry when I approach a doc and get this kind of response I had one like that two years ago than darn killed me by ignoring lab work regaurding my kidneys he also ignored my hubbys complaints and now he is fighting bladder cancer. Warning listen to your own instinks

[BlackSpinner]

eerrmm Junebug I use a hybrid with a pressure of 9 - just in case you believed him LOL. No problems with leaks either.

[Laurie1041]

GRRRRRRR.....this doc is bugging me..

Hi Junebug999,

Is there any way that you can get a referral to a different sleep doctor? Hopefully you have more choices than the one you currently have. If I were referred to this particular doctor, let's say by my PCP, I would go back to my PCP and let him or her know my complaints and simply say I could not go back to this doctor and the reasons why. Referring doctors often rely on the feedback of their patients concerning the specialists that they refer their patients to. Perhaps your conversation with your referring doctor will be very enlightening and he or she will be able to send you to another sleep specialist who is on the same page as you. A sleep specialist who not only knows who you are, appreciates your knowledge base, and does not use manipulative measures (i.e. "I use this mask") in an attempt to steer you away from what you are asking for. I urge you to use whatever resources are available in order to advocate on behalf of yourself. Ask yourself this: Would you trust a cardiovascular surgeon who behaved in the same manner as your sleep specialist? Scary thought! The point being that your diagnosis and treatment of OSA is critical and demands a specialist who is knowledgeable, thoughtful, and works with his or her patients in a meaningful, and trustworthy manner.

Anyway, thanks for listening....it helps I can come here and you know how I feel...AND please note...I've not even began to rant about my phone convo with the lame DME rep yesterday.....bleah....

The same applies to your DME. Check with your insurance company and let them know the what, when, why with regard to your current DME and find out what your options are with regard to changing DME's. If your current DME is local, I have found out through personal experience that a phone call proved ineffectual time after time. After I called my insurance company and asked to speak to someone in their DME department, I was able to find out exactly what the "allowed amount" of every single DME item pertaining to my CPAP needs. The solution to my problem with my "sketchy" DME was to simply go in and speak to the manager and tell her exactly what I wanted and why. When she found out that I knew exactly what my insurance would pay and that i was not leaving the premises until I got what I wanted, all DME games came to a dead stop. I no longer have any problems with "intermittent lameness".

I personally have a very low tolerance for ineptness especially when it comes to doctors (and DME). As an RN, it has been my professional obligation to advocate on behalf of my patients, and now being on the other side of the fence, I have to advocate on behalf of myself. The only way to stop be victimized by a very complex and difficult health care delivery system is to educate yourself (which you are doing) and to get in the drivers seat by setting the bar where it needs to be - starting with a decent sleep specialist and "training" your DME (if at all possible).

Best wishes to you. Laurie

[chunkyfrog]

I have used my Swift FX mask at 14 cm with no problems--except my mouth opens when I fall asleep.
The mfr's specs say it is good up to 20 cm--OK, grain of salt time.
I have tried both Hybrid and Liberty.
The Hybrid is a better deal with all sizes for about half the price. The pillows are a tad hard.
The Liberty has nice soft pillows, but the mouth cushion would require me to borrow Jay Leno's chin to get a seal.
I'm sleeping quite well with a Respironics comfortgel full face, but it has a forehead cushion.
I'm with the others that you need to get your PSP to give you a referral to a different sleep doc.
But, outside of calling their offices and asking staff if new docs are enthused with patients armed with data--
who else can you ask?

[Bons]

Perhaps the doctor meant that you didn't have any significant central apneas? 4 in one night isn't a major deal, as they can occur as you switch from wakefulness to sleep and even while turning over in your sleep.

But on the other hand, it is your right to have a doctor that gives a darn about you and will discuss your case with you. I just made my switch official.

[DocWeezy]

The Hybrid does work at higher pressures....I have one and my S9 settings are from 10 to 16. No problems. I had also tried the Liberty but couldn't get it to quit leaking, and the Hybrid has more options to give you a good fit. I'm a mouth breather and pretty claustrophobic, and the Hybrid works very well.

I simply don't see any reason why a doctor should want to steer to away from ANY mask or towards any mask--the goal is to find one that fits YOU and that YOU like. Harumph.

Definitely looks like you need to think about finding a different doc--one that really has your best interests in mind.

Weezy

[Muse-Inc]

eerrmm Junebug I use a hybrid with a pressure of 9 - just in case you believed him LOL. No problems with leaks either.

Ditto, tho my APAP range is currenty 9.6-15 with 95%centile running anywhere from 10.4-13 on any given night. There are others here with 'real' high pressures that have no leaks wearing the Hybrid.