Went to see the sleep doc and GUESS WHAT I GOT?

[Mr Capers]

Hi Everyone,

I've been on a BiPAP AutoSV since August, and yesterday had my first visit with my HMO's sleep Dr. Here are my notes - with names removed.

Dr. Blank Appointment 11:30 AM December 15, 2009

On December 14, received a call from _________, RT at HMO. She said a review of my oximetry data from November 24 revealed low O2 levels and Dr. Blank wanted me on nighttime oxygen. November 24?? Three weeks to review data?? Severe work overload?

________ made an appointment with Dr Blank for the following day, the 15th, at 11:30. I left the appointment at about 12:45. The entire appointment was a confrontation. Here is what I found:

1. Dr. Blank did not want to see any data of mine. He gave it a glance, interrupted me as I was trying to explain it, and ignored it thereafter. One of my objectives was to learn why my sleep data was changing rapidly for the worse. I never got an answer.

2. He interrupted several times as I was answering his questions, often leaping to conclusions that were incorrect. He was rushing as much as he could. He paid no attention to my concerns or questions, except when he used his stock answer of “clinical judgement” prevails over all. (Was he just in a hurry to get to a lunch date? Does this excuse his behavior?)

3. His clear agenda was to get me to accept a prescription for oxygen and inhalers. He cajoled, threatened to withhold the prescription and said I could die if I didn’t accept.

4. I asked for a full sleep study polysomnogram (PSG) and he said he could ask for it but saw no need. I believe there was a clear implication that HMO would turn down the referral. Blank seems to believe that his “clinical judgement” is a full substitute for a complete diagnosis. He filled in the form for a referral while I was there.

5. I asked for a titration. He told me there was no need as a titration was only to set a “fixed point” of pressure. I attempted to explain that a titration was required by the machine manufacturer. He reiterated that nothing would be gained by a titration as it only arrived at a fixed pressure and cut me off when I tried to explain that the three to four machine settings needed to be individually adjusted for each case of CompSAS/CompSDB. He said his judgement prevailed over the Respironics information about titration being required. Note: Blank does not seem to understand the BiPAP AutoSV - he seems to think it is an auto-titrating BiPAP.

6. Again pressing the oxygen supplementation issue, I told him that I had done research which said oxygen did not help with CompSAS/CompSDB. He replied that he had other research which said otherwise. He did not as I recall bring up “clinical judgement” during this part of our extended confrontation. (Anyone here have solid research on this point? SWS? Muffy?)

I left with all my questions unanswered. My concerns about adding oxygen to my treatment regimen without either a full diagnosis and titration to maximize benefit from my present machine went unanswered. I do not trust Dr. Blank’s judgement, see that we are unlikely to ever agree as he wants his “clinical judgement” to prevail over data, other opinion, published studies in peer reviewed journals, etc. He shows no interest in my care other than to impose whatever regimen his “clinical judgement” indicates on me.

I want and need a collaborative relationship with my doctor. I seem to have that with the rest of them. I think I need a new sleep Dr. and fear for my health under Blank’s treatment.

My description of Dr. Blank would be “arrogant,” not too uncommon in doctors, next, I add “condescending” for his patient - I would also add “jerk”, for the way he treated me.

This is, I think, a perfectly awful situation. I'm very glad to have my friends here, who I can depend on to treat me with more care and concern than my sleep Dr.

Clearly, I got to take action on this. My next closest shot for a sleep dr in the HMO is about a 1 1/2 hour drive.

Mr Capers

[Hose_Head]

A strong patient - doctor relationship is very important. It sounds as though you have no confidence in this doc. You might consider switching.

Also, try googling on "rate my doctor" and checking out some of the number of such web sites that are available. See what others have been saying about your doctor. It may confirm what you already know.

[thewetlizard]

Welcome to the HMO mess up. And that doctor doesn't know a hole in wall from his a--! I think it's time to get another doctor!

[Wulfman]

Sorry to hear about that.

Are you going to be using oxygen then?

In which state do you live? There may be some users out there who may know of a better doctor.
How many doctors are there to choose from? With your condition, you need one that knows what they're doing......and apparently your existing one doesn't.


Den

[Gerryk]

First off, find yourself a different doctor. Second write everything down as much as you can. Then call and talk to someone at the state medical board.
Would not put up with this and don't think anyone else should either.

[-SWS]

6. Again pressing the oxygen supplementation issue, I told him that I had done research which said oxygen did not help with CompSAS/CompSDB. He replied that he had other research which said otherwise. He did not as I recall bring up “clinical judgement” during this part of our extended confrontation. (Anyone here have solid research on this point? SWS? Muffy?)

Supplemental O2 most often does not help simply because most CompSAS/CSDB patients manage to maintain a sufficiently high basal O2 level in the first place, Mr. Capers.

However, if basal O2 is even marginally low, then it makes sense IMHO to experimentally hold the O2 baseline higher. CompSAS/CSDB is primarily a hypocapnic disorder entailing failure to cross a crucial CO2 inspiratory-trigger in the transient domain (thus a dynamic hypocapnic failure to trigger that next breath). However, the basal or non-transient O2 and CO2 ratios are arguably important toward avoiding what seems to be inherently chaotic CompSAS/CSDB central disruption in some cases.

Thus, if O2 runs even marginally low in CompSAS/CSDB cases, experimentally reconciling basal or "non-transient" O2/CO2 ratios with supplemental O2 actually makes perfectly good sense IMHO as a layperson...

[yasulh]

As a health care provider myself, my advice is to find another doctor (even if far away) for at least a second opinion. Clinical judgment is important, but not to the exclusion of data and research. If he can't explain why his opinion differs from the research recommendations, then he is likely not staying current in his field and could be a threat to your health!

[Mr Capers]

Hi Everyone,

Apria is on its way. First comes the nurse, later the oxygen concentrator. This all starts in the next 30 minutes!

Thanks for the support. I'll respond more completely later, but right now I want to specifically ask SWS if the article he cited in the epic postings on Crowpat's settings http://chestnet.org/education/online/pc ... rint10.php
has a bearing on my situation.

Here's a quote from that article:

Oxygen therapy often is not very helpful in CompSAS because, by the later stage of titration when patients can develop periodic breathing, saturation percentages are usually in the high 90s, and further improvements in oxygenation have very little effect in treating the disorder.8

Then there is:

Treatments originally used for CSA have been advocated for CompSAS, including oxygen supplementation, which has been used with some success in congestive heart failure.8 However, oxygen therapy has not been shown to be as effective as CPAP and was found to be inferior to BPAP or ASV.17

And, from the Conclusions:

The syndrome cannot be consistently treated with oxygen or CPAP therapy. BPAP and ASV are the only consistently well-documented forms of therapy. Both may be equally effective, but ASV appears to be better tolerated by patients. The efficacy of a particular modality of therapy should clearly be demonstrated in the sleep laboratory in an individual patient before its use.

I was basing much of my objection to the oxygen supplementation on the above material.

Your comments would be very much appreciated.

Thank you,
Mr Capers

[Slinky]

I wouldn't care if this sheister could walk on water, I would NOT tolerate such treatment and would dump him. I don't care how far I would have to drive to find a decent sleep doctor. I ran into one of those sheisters at Mayo Clinic. I spoke to the Patient Advocate there as well as sent a written letter of complaint. I don't put up w/that attitude or behaviour when I'm the one paying the bill - and it makes no difference whether I'm paying thru my insurance or out of pocket, I'm still the one paying and do NOT have to put up w/that shoddy treatment and attitude!! Nor will I.

[JohnBFisher]

I would recommend a several prong approach:

1) Try supplemental oxygen. As -SWS noted, it appears part of the problem with Complex Sleep Apne Syndrome is a tendency to swing between breathing too quickly and too slowly. (In short the respiration system used during sleep uses blood chemistry to help regulate breathing. With some people that regulation process tends to be too sluggish. Thus, they don't breathe enough to properly expel CO2, it builds up and then the body over compensates, and then it needs to slow or stop breathing to compensate and then it needs to breathe more rapidly ... and so on). If it helps, great. It may not.

2) Have a discussion with your insurance company about the situation.

3) Talk with the sleep lab folks to see who else in the area might be able to see you. Don't complain about the doctor to them, since the doctor helps guide patients to them. But if you note you need someone who fully understands the latest research on Complex Sleep Apnea Syndrom (CompSAS), they might be able to give you a pointer.

4) Go for a second opinion. If you get a better reaction from that doctor, then that doctor might become your primary sleep doctor.

I don't know if this approach will work for you, but it is how I would tackle the situation.

[-SWS]

Mr Capers, please note that very lengthy underlined part in my post above. Do you see how that CompSAS/CSDB "usual case" comment of mine corroborates what you quoted in the white paper above?

The question really isn't what's occurring with everyone else's SpO2. The pertinent question happens to be what exactly does YOUR basal SpO2 happen to do as you sleep? Does it ever migrate down to the low 90% range for extended periods before central disruption? If so, then your doctor's proposal to try supplemental O2 in an attempt to normalize your basal blood-gas ratios is an entirely reasonable treatment experiment. One that I would want if I were in your shoes.

http://books.google.com/books?id=GbJSSQ ... 22&f=false

Complex Sleep Apnea

Nasal CPAP is successful in the treatment of obstructive events in CompSA, but it also unmasks the CSA and CSR, which continue to disrupt breathing and sleep despite CPAP. The optimal treatment strategy for these patients is not known. Supplemental oxygen or low-concentration CO2 used to prevent hypocapnia and, consequently, central events may be an effective adjunct therapy.

[goose]

An hour and a half drive isn't all that much really - I say that knowing if I want "fast food" I have to drive 45 minutes!!!!!

It sounds like Blank is an arrogant twit and you should get an appointment with another doc post haste. The guy may be the greatest thing since sliced bread, but there is no excuse for treating a patient in that manner.

While going to the other doc, I'd start rattling some cages regarding Blank. He reports somewhere, and perhaps a few well placed notes documenting objectively his treatment of you during your appointment could go a ways in getting him disciplined, re-trained, given his walking papers (doubtful), but if it were me, I'd be making some noise while pursuing alternatives.

Keep us up on how it's going.

good luck
cheers
goose

[-SWS]

Mr Capers, so is there any chance that you two might have simply got off on the wrong foot? Perhaps an initial grimace or frown somewhere along the line that commenced an unfortunate spiral? Doctors and patients are equally human. And we all have our bad days.

Here's a hypothetical experiment that I would never recommend anyone actually perform:
1) Meet 100 strangers in a crowd with a disapproving look on your face and note the reaction, then
2) Meet another 100 strangers in that same crowd with a smile and note the results.

Expected results: plenty of adversarial responses in the first 100 and plenty of cooperative warm smiles in the second 100; both sets of contrasting results coming from perfectly "ordinary humans".

So is there any chance at all your doctor is a perfectly "ordinary human" even more than ogre? I suspect that we, as patients, quite often engage our "ordinary human" medical professionals with faaaaar less than a smile. We are understandably stressed about our health problems. And medical professionals will persist in being "ordinary humans" despite their training. And they clearly have bad days as well...

[jnk]

O2 is worth a shot. Hey, why not? It may not help everybody, but it does some. The study was about what consistently works from person to person, not what consistently works with one person. For some people, O2 consistently works for THEM, and that's all that matters for their individual cases.

Besides, your doc, like most docs, may just be the front for the real man behind the curtain, the insurance people. And the game absolutely MUST be played their way, one way or the other. That means the doc may have to check off a little square somewhere on a little check sheet that says: "Did you try O2 first?" Let the doc check off that square if he needs to. After all, it is likely that if you go somewhere else, THAT doc will just have to start at square one checking things off all over again.

The doc may be too embarrassed to admit that insurance is running the show and that he has to try things in a certain order whether he really wants to or not. You may have to give him some dignity on that. Docs are funny that way.

So you gotta ask yourself if his track record makes him worth sticking with for longer on the ride. Maybe he has lousy people skills but is a great doc who knows how to get you what you need as long as you let him play his game with the insurance people. You have to have trust and a working relationship, so you can trust him and try to find out respectfully what is going on, or you can jump ship and swim to the next one. Just make sure you have a better ship to swim to somewhere before you jump.

If I was him, though, I would change my name. "Doctor Blank" just sounds funny.



jeff

[-SWS]

I asked for a titration. He told me there was no need as a titration was only to set a “fixed point” of pressure. I attempted to explain that a titration was required by the machine manufacturer. He reiterated that nothing would be gained by a titration as it only arrived at a fixed pressure and cut me off when I tried to explain that the three to four machine settings needed to be individually adjusted for each case of CompSAS/CompSDB. He said his judgement prevailed over the Respironics information about titration being required. Note: Blank does not seem to understand the BiPAP AutoSV - he seems to think it is an auto-titrating BiPAP.

Kaiser supposedly allows for PSG titrations when necessary. I think I would call Kaiser and try to get clarification about criteria for that PSG titration. I'd even try to get that clarification as written correspondence---maybe a fax or email.

Too bad you don't have another Kaiser sleep doctor near by...