Doctors who refuse to refer. (Playing dumb)

[quietmorning]

Neither my Cardiologist nor my PC doc were surprised that I've been diagnosed with Sleep Hypopnea and am now on a CPAP machine.

Why on earth after all this time of complaining about headaches, fatigue, pain, etc. . .did they not refer me to a sleep study?

My cardiologist actually acted disappointed that I was diagnosed and on CPAP stating that more and more of his patience are on CPAP. His nurse right before said that she sees that a lot and rattled off the symptoms to me.

Grrrrrr. I want to bonk a couple of docs. Sigh.

I think I'm going to make some changes.

[louspeachy]

There are doctors that graduated from the top of their class and those that graduated at the bottom. They are all doctors but obviously not equal.

I had open gallbladder surgery a month ago and when the doctor went to the pull the staples, it burst open like Old Faithful and got infected. Then the antibiotic he put me on gave me a SEVERE allergic reaction (a week of itching rash so far but slowly getting better). When I went to see him Tuesday, he called the whole thing "an ordeal" (he has no idea). Not saying he necessarily did something wrong (no drain when he did the surgery but what can I say) but he still called it a "minor setback" (the infection) and than "an ordeal" with the rash.

Unfortunatly, doctor's will never say they did something wrong, partially because of lawsuits I would suspect. And, another doctor will never speak against him. Don't hesitate to switch doctors if necessary. I know we all hesitate to do this but we are dealing with OUR BODIES and we only have one!

Louise

[Spirit]

Louise made a good point. Not all doctors are educated equally. Most specialist such as caridologist, speacialize in thier field. A primary listens to patients and send to specialized clinics from diagnosis/testing. Experience and years of practice is a key factor. My cardiologist sent a request to my primary to have sleep study done.

Edit: Also forgot to mention, lot's of hospitals/clinics try to save money, and many health care insurance providers, decline particular testing request by doctors, so most doctors try to stay within acceptable financial bracket (yearly spending),. So doctors play dumb to cut medical expenses.

[Emilia]

After a decade+ of not getting a sleep study even though I complained mightily about extreme fatigue and many other red flag symptoms, it was the cardiologist I saw for a stress test that put 2 and 2 together for me! So... some cardiologists are well rounded enough to pick up on this. He ordered an overnight oximetry test in which I bottomed out at 76% and that sent me off to his recommended sleep doc ( a pulmonologist) and then a sleep study. The rest is history.....

[BeanMeScot]

I was lucky. I just mentioned to my doctor that I had vacationed with a friend and she mentioned I was snoring really bad and that I didn't used to. First thing out of the doc's mouth was to have a sleep study done.

[avi123]

It happened to me too when I told my internist that I can't sleep anymore even with the 10 mg of Ambien that he prescribed. I came back and ended seeing his PA who agreed to change the Ambien to Restoril. Luckily, on my own I went to see another Internist who immediately suspected OSA and sent me to a PSG.


Your title of DOCTORS WHO REFUSE TO REFER is correct!
My above internist (marked) depends on other physicians appraising him that he knows a lot. That way he also got on the list BEST DOCTORS.

[quietmorning]

I was already beginning to look for a new PC, but honestly I was very surprised that my Cardiologist reacted the way he did. I thought he practiced in the best interest of the patient - this really showed different.

[avi123]

I was already beginning to look for a new PC, but honestly I was very surprised that my Cardiologist reacted the way he did. I thought he practiced in the best interest of the patient - this really showed different.

Most Cardiologists don't deal with Sleep Apnneas. Only few do. I usually check on the Iternet the physician's background which generally gives me some info.

[CSwriter1]

It was an emergency room doctor who got me to a sleep specialist. I went into the emergency room with a terrible pain in my neck. Not thinking it would lead to anything, I said it wasn't just the pain in my neck, but I was so tired I couldn't cope with the pain.

A judge had given me my grandchildren and thank goodness they were old enough to fend for themselves, because I was falling asleep before dinner time. I absolutely could not stay awake. When I got my CPAP machine, there was no question I would use it everyday. I know, regular doctors tend to over look the small complaints. I like to think it is their positive attitude, and perhaps our failure to not stress our complaints are serious.

If in doubt, come up with an excuse to go to the emergency room, and tell the emergency room doctor your troubles.

[cowlypso]

My problem wasn't that my doctor didn't refer me, it was that the first time I was referred the doctor didn't follow through. I complained about how tired I was, and he said I should go get a sleep study. Wrote me a prescription that said "sleep study" on it and sent me on my way. I had no clue where to go to get a sleep study, so I never did. About 4 years later, my exhaustion got really bad again and I went to my new doctor. He immediately ordered blood tests and referred me to a sleep center. CPAP has made such a difference just in the past 3 weeks I've been using it, I wonder what I missed in those 4 years!

[chunkyfrog]

Education!
I am now even more convinced to do something about educating people; starting with my doctor, my dentist, and the personnel department where I work.

[xyz]

> Not all doctors are educated equally.

Very true. It's hard to find a great doctor, but it's important to keep trying until you do. Do not return to poor or mediocre doctors. Your health is at risk if you do.

> Most specialists such as cardiologist, specialize in their field.

"specialize in their field", exactly. And usually not much beyond it.

There is an old fable about the five blind men and the elephant. One touched the trunk and thought it was a rope. One touched the ear and thought it was a leaf. One touched the leg and thought it was a tree. Etc.

There is an important meaning in there. If you go to (say) a dermatologist, he is going to look at you through his "dermatology glasses". He will interpret your symptoms and diagnose you through his dermatology training. And if your real problem is not dermatology based, it could all be a waste of your time, effort, and money.

What we all hope for is a Primary Care Physician who makes the right initial guess and sends us to 1) the right kind of a specialist who 2) is a great doctor. Not that it happens all that often, but that's our hope.

If things aren't getting better, ask yourself:
Am I not seeing the right kind of doctor?
Am I seeing the right kind of doctor, but, for whatever reason, he isn't helping me to get better.

> so most doctors try to stay within acceptable financial bracket

This is especially true if you have an HMO. In that case you often need to be assertive about insisting on a referral to a specialist.

Some PCPs try to do too much. This can happen a couple of ways.

One is that they try to treat you for a medical problem that they do not specialize in, in order to make more money for themselves rather than send you to someone else.

Another is that they know that the HMO doesn't like them to make too many referrals to specialists, so they try to take care of it themselves.

You are likely to get sub-par medical treatment in either case. Even the best intentioned general PCP is unlikely to know as much about a particular problem as a specialist who _only_ sees patients who have that kind of problem.

When I look at my insurance company's website to check out doctors, I am surprised to find that there are now _many_ doctors who claim to _also_ be sleep doctors. Not some more, many more. Years ago they were few and far between. I am in disbelief that these _new_ sleep doctors have much expertise or experience in the field. The number of them has certainly proliferated, but that does not mean that they are good at it.

[robysue]

> Most specialists such as cardiologist, specialize in their field.

"specialize in their field", exactly. And usually not much beyond it.

There is an old fable about the five blind men and the elephant. One touched the trunk and thought it was a rope. One touched the ear and thought it was a leaf. One touched the leg and thought it was a tree. Etc.

There is an important meaning in there.

There's a second important meaning in this old fable too that xyz missed: All of five of the blind (wise) men missed the WHOLE picture, and they would not work together to develop an accurate understanding of what the elephant truly was like. And this moral also has important implications in our highly Balkanized world of specialized medicine as it is practiced in the US.

Many, many of us have more than one serious medical problem. Think of a patient with two problems A and B that both directly affect the quality of their daily life. And all Specialist A is worried about is Problem A and all Specialist B is worried about is Problem B, but neither is thinking of the patient as a whole person. It's really easy for stuff prescribed or recommended by Specialist A to cause problems with treatment recommended by Specialist B. And vice versa. And neither Specialist A nor B seems to seriously consider the full ramifications of all the treatment the poor patient is dealing with. And so the patient makes intermittent progress on each problem, but no real progress on the sum of the two problems, and continues to not feel well.

In our (broken) system, our PCP is supposed to be the conductor of the symphony and make sure that all the individual players on the medical team are working together to help the patient with multiple problems genuinely get better. He's supposed to be the one who sees us as a whole person and not just the sum of our multiple medical conditions, their individual symptoms, diagnoses, and treatments. But it doesn't work that way: Most of the specialists do NOT actually respect the PCPs in the first place, and it's a rare PCP that will go to bat for a patient who runs into problems with a specialist. So we get cacophony instead of music in our medical care.

Yeah, we patients routinely list our other medical conditions and the list of drugs and therapies that have been prescribed by all our doctors. But it's not clear at all that the specialists (or the PCPs) really understand the full implications of strong prescription drugs or complex medical therapies prescribed for medical conditions outside their field of expertise. Nor do they seem to understand how those other drugs and therapies might just interact with the drugs and therapies they are prescribing. And in a worst case scenario, they might not even care about such interactions.

I'll use myself as an example: Since January, my neurologist has tried me on three different prophylactic migraine medications. All of which have plenty of other uses in treating disorders such as epilepsy, bipolar, depression, and mood disorder as well as migraines. For those of you blessed to know nothing about serious migraines, the world of prophylactic migraine meds resembles the car shops where you take the car in and they replace part X hoping that will fix the problem, but when it doesn't they move on to replacing part Y, and so on. Lots of things to try and all of them originally developed for and still used to treat many, many other medical conditions. And significantly, "migraines" is an accepted, but still "off-label" use of many of these drugs, including one that I was given as a trial.

Well I was the dutiful patient who told the neurologist and his PA all about my OSA diagnosis and my difficult adjustment period to CPAP and the fact that I was fighting serious insomnia as the result. And each time I couldn't tolerate a med, I got switched to yet another med that when you started reading the common sides effects, problems with sleeping popped up: Mostly insomnia, but also in one case a tendency to aggravate apneas as well. Of course, it's kind of tough to find a med that doesn't have "insomnia" listed as a side effect, and to be fair, all three of the drugs also listed as a possible side effect drowsiness. Which, since these drugs could be taken at bedtime could have "helped" with the insomnia---if I'd reacted normally. And to be fair (again) as soon as I reported that I believed that drug X might be aggravating the insomnia along with other side effects, the neurologist's office did start tweaking the dose or weaning me off the drug entirely.

And I was also the dutiful patient who reported appropriate information about the current migraine med each time I went into my old sleep doctor's office to talk with the PA about my so-so progress on adapting to xPAP and my up and down progress on the insomnia. And I talked with the PA at length about how the side effects were affecting the insomnia and how I had been (or would be) in touch with the neurologist's office to report the problem and what the current plans about the meds were. And I repeatedly said these meds were being prescribed for migraine prevention. Well all three of the drugs I tried, but could not tolerate, are also used as mood stabilizers under certain circumstances. When I finally got copies of all the dictated summaries of my visits (as part of the process of switching to the new doc), I was quite appalled that the hypothesis that I was dealing with a mood disorder popped up in writing much, much earlier than that last disastrous meeting when the new PA told me that I had a mood disorder to my face and said I needed to see a psychiatrist as well as a sleep apnea dentist before coming back to their office in the fall. And once "mood disorder" started to appear in the written reports, the words "migraine medicine" disappeared.

And finally for those who have followed my long and difficult and ongoing "adjustment" to CPAP: I am now convinced that I will truly only start to "feel better" once the whole complex web of (BiPAP and apnea), (migraines and vertigo), insomnina, TMJ issues, and seasonal allergies are all effectively dealt with in a holistic fashion: Whenever any one of the five major problems or its current treatment plan triggers issues with one or more of the other major problems, I go backwards in terms of how I feel. Finally realizing this has, however, given me much insight into my long battle to make xPAP work for me as well as my long battles with the insomnia and the migraines. And in the last week or two, some progress is finally being made on all fronts simultaneously.

[BigNortherner]

One aid doctors should use is a checklist, to run through.

Not quite as easy as it sounds, but worth looking into.

[archangle]

While I agree that they could do a better job, I'm not convinced it's that simple. We tend to see things through "CPAP goggles" and see CPAP everywhere. I'm not that sure that even a good doctor without a CPAP bias would see all the apnea we think we see. It may very well be that there are a lot of other explanations for what they see.

Remember, hindsight is 20/20. Once you figure out the medical condition, you look back and remember the signs that should have told you what it was. You forget the other unrelated symptoms and the many other diseases that would fit some of the symptoms.

There are also so many conditions to look for that it's hard to ask the right questions. Yes, a 2 minute questionnaire and exam might find a lot of apnea cases. But there might also be 20 or 30 other things he could do a 2 minute test on and find a potential problem. While that might sound worthwhile, I suspect the patient's eyes would get glassy after 5 minutes or so and the answers would be less worthwhile.

However, I am amazed at the level of apnea ignorance I hear from medical people. I've talked with several medical people (not GP's) and they had very little clue about apnea. These people had a real chance to notice signs of apnea and refer their patients to someone else for an apnea investigation. I've been trying to educate them. I'm a CPAP evangelist. Heck, I tried to tell my dentist he needed to get a sleep test.

The other reason I think some of this gets missed is patient resistance. I resisted my doctor's efforts to get me interested in CPAP/apnea way. I figured it's the latest medical fad out to get my money. Yes, maybe the doctor could have got me started sooner, but then there might have been another half dozen tests I "should" have gotten done, and he had to decide which tests to try to get me to take.