Would you change docs over this?

[AHI15]

Hi:

I've been with my current PCP and complaining of increasing fatigue for about 7 yrs. He has also been aware all that time that I had a PSG 19 yrs ago, which was inconclusive.

I could forgive him for not advising me to have a new sleep study. Though, I think he should have recommended another test a long time ago. It was a work Dr. that recommended me to have another study. So I self-referred to Stanford. But what happened next has me close to the breaking point:

After I had the recent study, I went back to see my PCP. He immediately prescribed a CPAP machine and told me that I don't need to go back to Stanford for any followups, that he will send his "guy" over to my house to set me up with a CPAP machine. I thought this was peculiar, particularly his eagerness to suddenly be very involved in treating my new-found sleep disorder, and to involve his associate. I also don't like, in hindsight, the lack of discussion about the finer details of the sleep data--which of course I don't expect him to be able to discuss, as he's not an expert on sleep disorders! Which is why he shouldn't be attempting to usurp the process of my working with bonafide experts.

I said that his associate could contact me to discuss what they had to offer. Next thing I know, a week later I get a letter from my insurer, indicating that they were asked for preauth. to order a CPAP machine, but it needed my auth. to proceed. Of course, I said "no" don't do this, and I called the associate co. and said to cancel the order that I didn't ask for and wait for me to contact them if I want their services.

I'm pretty close to switching docs. If I knew of a better replacement, I'd do it in an instant. But my current one is actually about the best in my town. The nearby town might have some good ones, though.

Thanks for interest.

[TiredTooLong]

A little over a year ago I told my Dr. I had been tired for a long time. He said I was just getting old. I changed doctors and the new one set me up with a sleep test. Results AHI-64, o2=72, longest 102sec, result=very severe. What with the risks, he was playing with my life.

[dragonflybeach]

Does he have an office manager you can discuss your concerns with?

[zoocrewphoto]

My doctor never picked up on the sleep apnea possibility. I never complained about tiredness though. I assumed it was lack of sleep in general since I am a night owl, and complaining about being tired usually results in "go to bed earlier" even if I am not tired earlier. I also have high blood pressure and asthma, so that is what we have concentrated on. I do wish that she had thought of it and asked about since she knows my mom has sleep apnea. I already knew I had it, and while I was not volunteering that information, I would have answered honestly had she asked me. And then she could have given me the lecture about blood pressure, heart problems, and stroke. I didn't know that part, and seeing it on the news is what caused me to tell her.

Now. Once I told her, she was all in for getting me the right help and referring me to a good choice. She immediately started the referral process, and I am thrilled with the sleep lab and sleep doctor that she sent me to. She got the summary report from my sleep study before I had my followup appointment with the sleep doctor. I had an appointment with her 3 days before that appointment. So, she went over it a little with me as she didn't understand all of it. She has also seen some of my graphs since I have my machine, and she is very happy with the progress in my high blood pressure.


Your situation seems really odd. In some ways, it sounds like the doctor has a deal with the associate since he is so eager to send his associate. But if he did have a deal, you would think he would be promoting testing for sleep apnea more to make use of that deal. I would definitely be wary, and look into other options.

[kaiasgram]

One might wonder if your doctor is a little worried about having ignored your history (the inconclusive sleep study) and your seven years of reporting fatigue, and is now trying to cover himself by overcompensating. As to your question about changing docs, do you know another doctor that you feel you could have more faith in?

I know this sort of thing is disconcerting. My primary missed my diagnosis too, after many months of near-incapacitating fatigue (it got to where I was in her office every other week, sometimes every week). And even when I told her that I was starting to wake up at night having trouble breathing she did not consider sleep apnea. I forgive her because I do not fit the risk profile for sleep apnea at all (not male, not overweight, etc...) and because she has been earnestly helpful in many other ways. On the other hand, I had a dentist for many many years, even took my kids to him. One devastating day I went to him with some cold sensitivity and he came up with about a dozen "problems" he said he detected, including an infected root canal, a dead nerve in one of my molars, and several cavities and the list went on. I still trusted him but was so traumatized by all that bad news that I waited a whole year before going back. Finally I decided it was time and I decided to check out a new dentist (still, not because I distrusted my old dentist, I just wondered if seeing a female dentist might be a little easier for me). Naturally I expected that all the problems identified a year earlier would now be even bigger problems. My new dentist did a thorough exam, took xrays and compared them with the films from the other dentist, and could find NONE of the problems that dentist #1 told me he saw. NONE. Only one small area where she thought some decay was starting under an old crown, which we replaced. I'm still shocked when I think about it. This guy has been practicing in our community for many years and is highly regarded, but clearly he was manufacturing nonexistent problems -- grounds for a malpractice lawsuit I suspect. Now, if you had told me a story like this, I'd say RUN!!! RUN FAST, RUN FAR, GET A NEW DOCTOR AND DO NOT LOOK BACK!

I don't like how your doctor is behaving in the wake of you getting your dx from Stanford, but it might be informative to talk to him about how uncomfortable his actions have made you and see how he responds. That might help you decide what you want to do next. In the case of the unethical dentist, there was no question about what needed to happen. Good luck!

[archangle]

Unfortunately, this could either be moneygrubbing or a doctor doing exactly the right thing.

Did you get a titration at Stanford? Did Stanford want you to come back for something?

Sweetness and light scenario:

If he already had the info to know you need CPAP, and you had a titration, there may be no reason to go back to Stanford. Or if he feels competent to titrate you with an Auto CPAP and monitor the result with, that could be fine.

Lots of patients DO like it when everything in terms of ordering happens without having to take any further action.

Skeptical scenario:

He's infected by medical mafia thinking and is consciously or unconsciously maximizing benefits for his favorite DME. He may get some financial benefit, but even if he doesn't, they often have other medical providers that they simply like.

----

Do NOT let them choose your CPAP machine and model for you. Be sure to get a fully data capable machine.

If someone hasn't already pointed you to Janknitz's blog and other links about dealing with the DME, ask and someone will post them here.

[nanwilson]

Can we use the word "kickback". . If you go along with him, you are helping him pay for his new swimming pool . Don't ever be pressured into doing something, its your health and your pocketbook.

[BlackSpinner]

Stick with Sanford for the sleep issues. You want to see their specialist and get their recommendation for a machine.

Keep this one for referrals for anything else but keep a tight watch and get second opinions on every thing.

[chunkyfrog]

I changed doctors when the first one told me to 'live with' incapacitating monthly pain (she was a WOMAN!).
A doctor that doesn't listen needs to be exchanged for one who will.
Edit: --but since your options are limited, you could just put your foot down
about YOUR apnea, staying with Stanford and YOUR choice of machine and equipment.

[GumbyCT]

I'm pretty close to switching docs. If I knew of a better replacement, I'd do it in an instant. But my current one is actually about the best in my town. The nearby town might have some good ones, though.

Confused AND confounded or is it confounded AND confused?

He's the best around but screwed you anyway?

I went to what I thought was the best sleep center around - when asked about a follow-up I said I like my doc but wanted someone who was trained in sleep medicine. The tech told me that is a wise choice.

It took me about 6 months before I realized that "best sleep center" was just a money mill. Well ok it was after they wanted a 3rd sleep study in 6 months. I gave them the 1st two back to back nites but yet they didn't get enuff dx time to satisfy Medicare and wanted a 3rd? I just could NOT understand that.

IF I were you - I would stick with Stanford but keep both eyes open.

[JDS74]

Hi AHI15:

Your post raised several issues:

1) You self-referred to Stanford after you got little or no help from your local PCP.
Then he said he would prescribe CPAP for you without being qualified in sleep medicine.

2) He recommended that you not go back to Stanford for follow-up studies / recommendations / discussions of what you really need in terms of sleep therapy.

3) He initiated a sales call from a local, I presume, DME without discussion what your needs actually were.

All of these are problematical.

So, when you headed off the DME at the pass, that was a great decision. You need to be in control of what equipment you get. The other posts that mention a fully data capable machine are right on the money. Use this forum to find out if a particular machine being recommended is indeed fully data capable. Some are advertised that way but aren't really. The folks here can keep you on the right path.

Before going in to have the discussion about how things have progressed so far, please read a book entitled "How Doctors Think" by Dr. Jerome Groopman. It will give you insight into how the doctor-patient relationship can get all out of whack. Then when you do have that discussion with your PCP you will know that one likely outcome will be seeking a different physician - even if they are in a different town.

It sounds as if the general level of trust you had with this particular doc has been damaged to some extent. You need to decide whether or not you can get back to that level.

Finally, go back to Stanford for whatever follow-up they recommended with your first visit. I don't know how far away they are from you but for initial diagnosis and discussion of treatment the travel will be of small consequence for the value received. Perhaps they can provide a list of sleep medicine doctors nearer to you for your ongoing care.

BTW be very careful getting cost information on a CPAP machine and the cost to you ( your copay) from your insurance company. It is sometimes the case that your copay will be close to the cost of the entire machine if purchased from on of the online sellers so going the insurance route may not be all that beneficial in terms of savings. The online folks, like the sponsor of this forum, are strongly motivated to have you as a satisifed customer - somthing local DME's frequently are not.

I hope all goes well and this issue gets resolved in a positive way.

[GumbyCT]

In case no one has yet mentioned it

AVOID any doc
who sells cpap equipment,
or has a DME housed in the same building,
or is unwilling to let you choose which DME to use,
or let you have a copy of "your prescription".

Any one of the above are signs there is a conflict of interest in your health care. I call it signs of a Money Mill.

[zoocrewphoto]

In case no one has yet mentioned it

AVOID any doc
who sells cpap equipment,
or has a DME housed in the same building,
or is unwilling to let you choose which DME to use,
or let you have a copy of "your prescription".

Any one of the above are signs there is a conflict of interest in your health care. I call it signs of a Money Mill.

My sleep doctor is connected to a DME. Basically, the sleep lab is at a separate building in the same complex as the hospital. And teh sleep doctor is in another building across the parking lot. I do know where the DME actually is located. But when I mentioned that I had a DME picked out already, he said no problem, and they faxed all my info to the DME that day. I didn't think to ask for a copy of the prescription that day, so in my next visit, I asked, and he wrote one up for me. So, I suspect that sometimes, it isn't really a red flag unless they insist you use theirs.

[AHI15]

Thanks for all the replies!

Your situation seems really odd. In some ways, it sounds like the doctor has a deal with the associate since he is so eager to send his associate. But if he did have a deal, you would think he would be promoting testing for sleep apnea more to make use of that deal. I would definitely be wary, and look into other options.

This is an interesting contradiction. I'm not sure what's up with it. Maybe this is getting a little warmer:

One might wonder if your doctor is a little worried about having ignored your history (the inconclusive sleep study) and your seven years of reporting fatigue, and is now trying to cover himself by overcompensating. As to your question about changing docs, do you know another doctor that you feel you could have more faith in?

Well, I have started a little research on a new doctor, but it isn't the highest priority, as Stanford is treating me for the #1 problem in my life right now.

Where I am with Stanford right now is that I had the study, and am counting down the days to the first post-study appointment. There I expect to be threatened with being whipped by a giant air hose. Ie., I will be told that my diagnosis is OSA and I need to sleep with an air hose for the rest of my life. I'm not looking forward to this, but at the same time I am hopeful that it will really help and that I can adapt.

Honestly, I don't know for sure that they will go immediately to CPAP, but I think that is very likely. I hope that they will discuss in considerable detail the meaning of the subtler details of my study data, the prognosis for treatment with CPAP given my data, and alternative or adjunctive approaches for treatment and relief of my symptoms.

Thus, I am not finished with them. I did express this to my doc. He didn't listen. I will continue with Stanford until THEY say they are ready to hand me over to a local sleep specialist or my PCP doc.

Do NOT let them choose your CPAP machine and model for you. Be sure to get a fully data capable machine.

This is probably the most valuable piece of info I have gathered here recently. I want to be in full control of what equipment I get, and ultimately learn to control that equipment.

JDS74 wrote a lot of valuable stuff. Thanks, I will re-read it.

[archangle]

If you're willing to take charge of your own health, the most important thing is to get a machine that records airflow waveforms and USE it.

Once you get the machine, you can probably work out the details yourself if the doctors don't work them out for you.