help me address these comments

People like calist are best avoided in real life as well as on message boards.

Verbal abuse is usually the tip of an iceberg; there's a lot more bad stuff there that's hidden from view.

You know, I've been thinking we should hold a sort of town hall meeting starring calist and some of our own "experts". Who would you like to see up on stage with him? I'll start with SWS, that's an easy one.

muffy/notmuffy/SAG

Our RSPGT recognizes that we probably know more than he does about our S9 Elite and S9 Autoset.
Out of kindness, we do not rub it in his face--he just works there.

M.D.Hosehead wrote:People like calist are best avoided in real life as well as on message boards.

Verbal abuse is usually the tip of an iceberg; there's a lot more bad stuff there that's hidden from view.

M.D., Thanks for that reminder. I feel better now!

robysue wrote:calist asked:

So your sleep doc.... fixed you?

And you hate him?

My sleep doc has NOT fixed me. I've met with him once (before starting CPAP). I have a follow-up scheduled in a week and a half. All I know right now is that I am feeling orders of magnitude WORSE since starting CPAP. My machine is running in CPAP mode at the pressure in the doctor's prescription. That prescription was written based on a study conducted by a sleep tech where I was titrated at my current pressure for a whopping 30--40 minutes or so at the very end of the night. I am 100% compliant. At my one and only meeting with the sleep doctor I brought up the fact that I was worried about what kind of problems I might have adjusting to the therapy. His answer was essentially to blow me off by saying something along the lines of "Don't worry, you'll get used to it quicker than you think and it won't be a problem." So at this point, I have to say, No. My sleep doctor has not "fixed me"

And even when I eventually adjust to CPAP therapy, I would say that my doctor has not "fixed me". Rather, with guidance from the sleep doctor, the sleep techs, and the respiratory techs, I will be managing a serious health condition, not fixing it. To fix my apnea would mean curing it. And even the best sleep doc in the world can't do that yet.

And no I don't hate him (yet). But at my one and only meeting with the sleep doctor, I did not come away thinking that he genuinely cared about me and my particular sleep apnea problem. Rather it was clear that he regarded my case as completely run-of-the-mill, boring, uninteresting, and that he expected me to immediately adjust to CPAP therapy with no problems at all and no need to be able to see if my AHI number went down on therapy. My husband has called the office about my new (and alarming) daytime symptoms because I feel I am too emotionally distraught to talk to the doctor in a rational fashion. We're in a game of phone tag. We call, the office says the doctor will call back. But we have our own lives and commitments so that after waiting two hours for a return call, we have to leave. And then when we return home, there's a call from the doc's office on the phone saying they are trying to reach me. Yeah I know, I could just give them my work number. But I really don't want to discuss this problem in my office where I might have students when the phone rings. What about a cell phone? Well, I don't have one and I don't want one. Yeah I know, you probably think I should get a cell phone just for this purpose, but I disagree.

The general attitude conveyed by the language in calist's posts is why many people feel intimidated by their doctors. And that intimidation actually leads to many of the patient behaviors that calist so dislikes. Right now I do feel intimidated by my sleep doctor. And I do think that is impairing my ability to get quality treatment for a condition that I will have to live with and manage the rest of my life.

You need to come to a point where you can begin to understand the disconnect between your perspective and that of medicine. Let me tell you what I got out of your post.

1: I was titrated at my current pressure for a whopping 30--40 minutes or so at the very end of the night Two possibilities here, either you are mistaken which is a possibility I always like to consider, or the study is completely bogus and you need to ditch that sleep doc and go find some one that actually practices medicine. No one, absolutely no one can titrate inside of 30 minutes. It takes 30 minutes alone to confirm a pressure and that is allotting for enough time to find that pressure in the first place. If the titration was less than 3 hours long they could not even bill it to insurance which is why no respectable sleep lab would allow a 30 minute titration.

2: At my one and only meeting with the sleep doctor He met with you? He took time out of his day to actually see you and meet with you? Are you some one's friend? Why is he giving you special treatment? This guy is starting to sound like he has either taken a special interest in you or he takes special interest in all of his patients. He sounds like a nice guy. Apparantly you did not understand how significant that was however. Very few sleep docs actually meet with their patients.

3: blow me off by saying something along the lines of "Don't worry, you'll get used to it quicker than you think and it won't be a problem. He met with you in order to blow you off? That is a bit contradictory. It's kind of like making a house call to blow a patient off. Sleep docs meet with patients as often as pulminologists make house calls now a days.

4: Rather, with guidance from the sleep doctor, the sleep techs, and the respiratory techs, I will be There was a respiratory tech involved? Why was there a respiratory tech involved? Respiratory Techs do not work in sleep. They have their own department entirely. Do you think that just because there is a respiratory issue involved that a respiratory tech is bound to get involved? Respiratory Techs know absolutely nothing about sleep.

5: To fix my apnea would mean curing it. And even the best sleep doc in the world can't do that yet. You should speak to Dr Miller, Dr Green and Dr Gross at National Rehabilitation Hospital in Washington DC. They can cure you. It's really really expensive and I doubt insurance will cover it but, they can do it.

6: But at my one and only meeting with the sleep doctor, I did not come away thinking that he genuinely cared about me He didn't have to see you ya know.

7: Rather it was clear that he regarded my case as completely run-of-the-mill, boring, uninteresting, Because to him it is. He has probably been doing this for so long that he is bordering burn out. Look at the alternative. Do you want to be a new sleep doc's first patient ever? He'll regard it as exciting, exhilarating and endlessly interesting. He'll also do nothing to help you because he doesn't know what he is doing. Seriously, before you condemn him for acting a certain way, imagine the alternative. If you needed an appendectomy would you want some one that is super excited to be performing the surgery for the first time or would you want some one that performs 400 appendectomies a year?

8: I feel I am too emotionally distraught to talk to the doctor in a rational fashion This statement right here is the core of the disconnect between physicians and patients. Patients are emotionally charged and they expect everyone else around them to be as well but in order to actually approach, handle and control a medical condition you need to take all emotion and put it up on the shelf. You have to have a clear head 24/7.

Ask yourself this one question. Do you really think you are the first patient he has ever seen that was emotionally distraught? Is there absolutely anything about you which he would consider to be original or even out of the ordinary? His lab probably sees at least two patients a night, which is over 600 a year. If you want to stand out, ask him how his day was. You know in the ten years that I've been seeing sleep patients, one of the very few that I remember was a guy that sent me a thank you card a month afterwards. It had this picture of a woman laying on the floor in a restaurant and it said "You really knocked yourself out. Thanks." I still have it in my office some where. I don't remember his name or what he looked like but I remember that card and what it said.

9: Right now I do feel intimidated by my sleep doctor I hate to say it but the attitude a lot of us convey is mostly caused by frustration. It doesn't matter how hard or for how long you try to fix people. At the end of the day it is a loosing battle. Patients (as a whole) are entirely too self destructive and this is one of the first things that you learn when you get into medicine. Every symptom has a cause and every cause was created by the patient. Well almost every cause. Patients spend fifty years destroying their own bodies and then they roll in and say 'Fix me up.' but even if you do, they'll be back because it is their lifestyle that is causing the problems.

I had a bloodhead about 19 years ago. I was a first year EEG tech and I was hooking up this guy who had a ruptured aneurysm in his head and the blood pressure from the rupture had nearly washed his brain out of his skull. He was 300ish pounds and a had a long cardio history (he had seen this coming and did nothing about it) He had only been at the hospital for 24 hours. EMS had kept him going long enough to get him in and he was on full life support by that point. Defibrillator kept his heart going and respirator kept his lungs going. Even then he was far from stable. His heart rate was jumping from 150bpm to 250bpm just sliding back and forth waiting for the brain to come in and tell it what to do. Brain wasn't talking to it however and we all knew why. The ICU nurse kept walking over to the door of the room every time his heart rate broke 220bpm, she was ready to code him at any moment but when it fell back below 200 she would walk back out into the hall. She must have walked back and forth to the room at least six times in the 30 minutes I was there. I remember that the guy's wife, mid 50s was in the room. One of his docs had told her to come say her goodbyes just in case. We all knew where this was going. There is a reason people lay in bed with their eyes wide open, drooling with a heart rate of 200. He was gone. Everyone knew it, they had just called me up to confirm it. So I hooked up, it took me about ten minutes and I could already see that there was nothing but background noise in his head. Like pressing a microphone up to an empty room. His wife turns to me and says...

"We're going on vacation next week. Do you think he'll be better by then?"

I told her to leave. I said that I was performing an EEG and I could not have her in the room during the procedure. In 30minutes she could come back but for the moment she would have to exit the room. This was of course not true. I had performed EEGs with other people in the room before but for a first year EEG tech she was introducing emotion into the situation. Whether she was in denial or confused or wasn't listening when people told her what was going on or maybe she had only recently showed up. I didn't know and I was not going to know. I had a job to do and I was going to do it. I had a hard enough time keeping myself from bringing my job home with me and I sure was not going to allow this woman to further complicate matters. My point is that emotion should never play a role in medicine. Whether you are intimidated or you feel rejected or ignored or excited or happy or anything like that, you should never bring it to your doctor because it does not mix well. I realize that people dream of Robin Williams running around as Patch Adams, warring against the stuffy doctors on the stuffy doctor board and chastising them for not allowing physicians to deploy the healing power of laughter as a method of cancer treatment. That is great, but in this profession devoid of emotion there are no egos which would prevent you from attempting it.

In fact, many people have.

M.D.Hosehead wrote:People like calist are best avoided in real life as well as on message boards.

Verbal abuse is usually the tip of an iceberg; there's a lot more bad stuff there that's hidden from view.

Yeah but you know they won't listen to ya.

calist,

My titration study lasted a full six hours. The titration started at 4 cm and the pressure was increased through the night, but not at regular fixed intervals. And so most of my sleep time was at pressures less than 9 cm: I was only at 9 cm for the last 30 or 40 minutes according to the sleep report which the doctor gave me when I requested a copy of it. I believe the pressure was finally bumped up to 9cm at around 4:30 AM because I had just had an event at the previous pressure setting about that time. The study ended promptly at 5:00 AM. as per this lab's standard procedures.

As for your expectation that I should feel grateful that a doctor took time out of his day to actually meet with me, a lowly dumb patient: GO STICK YOUR HEAD IN A HOLE SOMEWHERE.

Maybe you think it appropriate for sleep doctors to be prescribing treatments for patients whom they've never met; but I do not. And maybe it really is common practice for sleep doctors to not meet with the patients for whom they are prescribing treatments, but anecdotal evidence here suggests that many (probably most?) of the posters on this forum have indeed met their sleep doctor face to face. And at any rate, I most certainly would NOT patronize a sleep medicine practice where the doctors routinely feel there is no need to with the patients for whom they are prescribing treatments and/or drugs.

I did and still do resent the fact that at my first meeting with my sleep doctor, he completely dismissed any possibility that I might have adjustment problems out of hand and insisted that I didn't need to bother my little middle-aged female head with worrying about the details of my treatment. It's rather like a cardiologist prescribing medication to a patient for a heart condition and not bothering to answer the patient's questions about possible side effects in my opinion. But maybe you think that's ok too?

As a college professor I am obligated to treat all my students---even those failing my classes---with a modicum of respect and common courtesy. Common courtesy, my professional standards, and my own moral sense of what is honorable leads me to treat my students the way I want others to treat me. That means I don't call my students names, no matter what I think of their intelligence or mathematical talent. I can think of NO circumstance where I would tell a student to his/her face that he/she is stupid or that he/she is an idiot regardless of what I actually think of the student. I don't insult my students simply because my students are human beings and as human beings they are entitled to a certain amount of respect and common courtesy.

I expect my relationship with my doctors (as well as lawyers and other well educated professionals who provide services to me) to be based on common decency and courtesy and, yes, basic respect for fellow human beings. And quite frankly I felt that my sleep doc was treating me like a small child instead of an adult. It was personally insulting to me.

Finally I also maintain that since ALL my sleep doctor has done for me is diagnose the apnea and prescribe a CPAP machine set at 9cm, he has most certainly NOT fixed me and he has NOT cured my sleep apnea. In spite of his behavior towards me, he has given me a chance to learn to effectively manage this disease by using a CPAP machine. But the management of this disease is ultimately in my hands, not his, since I'm the one that must make the conscious decision every single night of my life to put the CPAP mask on and use the machine. And that fact remains true whether I've got a brick or a full data machine; whether I pepper my doctor with questions or not; whether my doctor meets with me to discuss the efficacy of my treatment or not; and whether my doctor thinks I'm an idiot or not.

I am most grateful that you are NOT my sleep doctor.

robysue wrote:calist,

My titration study lasted a full six hours. The titration started at 4 cm and the pressure was increased through the night, but not at regular fixed intervals.

They never are increased at fixed intervals. Pressures are increased only in the presence of events.

robysue wrote:And so most of my sleep time was at pressures less than 9 cm: I was only at 9 cm for the last 30 or 40 minutes according to the sleep report which the doctor gave me when I requested a copy of it. I believe the pressure was finally bumped up to 9cm at around 4:30 AM because I had just had an event at the previous pressure setting about that time.

Was it bumped up from 7cwp or 8cwp? Did the tech go up by 1 or 2 points? Some techs will increase by 1cwp for comparison at the end of the study.

Really what you need to look for in the study is Supine REM. The pressure that eliminated all events in supine REM is the pressure that fixes you. Supine REM is like the superbowl of titrations. If you went into supine REM at 430am and he fixed you on 9cwp then that is your pressure. I wish I could get a scan of that report though you probably don't have a scanner. How about this. What was your AHI during the last instance of supine REM and what was the pressure you were on during that period?

robysue wrote:The study ended promptly at 5:00 AM. as per this lab's standard procedures.

If the Tech did not have you fixed then he should have continued the study regardless. Until you can put a pressure that fixes them in supine REM on the chart and provided you can keep them asleep, a tech should continue the study regardless of the time.

robysue wrote:As for your expectation that I should feel grateful that a doctor took time out of his day to actually meet with me, a lowly dumb patient: GO STICK YOUR HEAD IN A HOLE SOMEWHERE.

Sleep docs typically never meet with patients. It's amazing that he even saw you.

robysue wrote:Maybe you think it appropriate for sleep doctors to be prescribing treatments for patients whom they've never met; but I do not.

and I am very thankful that you are not treating patients.

robysue wrote:And maybe it really is common practice for sleep doctors to not meet with the patients for whom they are prescribing treatments, but anecdotal evidence here suggests that many (probably most?) of the posters on this forum have indeed met their sleep doctor face to face.

Anecdotal evidence suggests that?

robysue wrote:And at any rate, I most certainly would NOT patronize a sleep medicine practice where the doctors routinely feel there is no need to with the patients for whom they are prescribing treatments and/or drugs.

So that is 18.3million dollars a year minus seven thousand dollar study cost, minus five hundred reading fee. I think they will survive the loss of your patronage. In fact they can use that one single day of that particular year where they are not seeing you as a patient to actually go outside into the sunlight and spend some of the money they have been making for the last decade.

robysue wrote:I did and still do resent the fact that at my first meeting with my sleep doctor, he completely dismissed any possibility that I might have adjustment problems out of hand and insisted that I didn't need to bother my little middle-aged female head with worrying about the details of my treatment.

You know, I don't know the guy. Unless you mention his name I'm going to assume I've never met him. However from the sound of it, I am starting to wonder whether or not he is confident you will comply with treatment at all. In the case of a patient like that, the only thing you can do is to just do the best you can and wait for the patient to have larger problems and return. After that, the patients tend to be a lot more humble and do a lot less table slapping when they tell you to shove that diagnoses "In a hole".

robysue wrote:It's rather like a cardiologist prescribing medication to a patient for a heart condition and not bothering to answer the patient's questions about possible side effects in my opinion. But maybe you think that's ok too?

Yes I do. You can not describe a drug's possible side effect to a patient. It would take years of education to properly outline the way that chemicals mix together and interact with targeted areas on a micro-biological level. The side effects they stick on the backs of the bottles aren't real side effects in fact. They are dumbed down versions of 'laymans terms' of a laymans term explanation which the FDA requires them to report even though people may disagree with the bastardization of the explanation. It is like saying that Ambien causes sleep-walking. Ambien does no such thing. Ambien makes people drowsy and if the patient taking it has a sleeping disorder which requires them to arouse in order to survive an event such as OSA(apnea) then the human body has to fight against the Ambien in order to keep you alive. It is attemping to bring you into stage 2 or even stage 1 in order to keep you alive and breathing where as the Ambien is trying to push you into Stage 3. The end result is a chemical war where the patient is flashing in and out of stage 2, REM and stage 3 so rapidly that they begin to have hypnogojic hallucinations and a constant activation and reactivation of the muscles. In this state the patient is capable of sleep walking.

But that does not mean that Ambien causes sleep walking. It just means that in certain cases the FDA has found patients on Ambien to exhibit sleep walking and so they demand it be stamped onto the bottle with all of the other 'Possible' side effects. So the physician prescribing the medication doesn't tell you any of this because he does not want to teach a three year class on the subject. Instead he picks up the bottle and reads the FDA warning to you... but then again, most doctors just assume a patient can do that for themselves.

I mean really, if you can diagnose and treat yourselves... why can't you read the FDA warning for yourself?

robysue wrote:As a college professor I am obligated to treat all my students---even those failing my classes---with a modicum of respect and common courtesy. Common courtesy, my professional standards, and my own moral sense of what is honorable leads me to treat my students the way I want others to treat me. That means I don't call my students names, no matter what I think of their intelligence or mathematical talent. I can think of NO circumstance where I would tell a student to his/her face that he/she is stupid or that he/she is an idiot regardless of what I actually think of the student. I don't insult my students simply because my students are human beings and as human beings they are entitled to a certain amount of respect and common courtesy.

If you fail to get through to your students- They will fail your class but they won't die. Mine will.

robysue wrote:I expect my relationship with my doctors (as well as lawyers and other well educated professionals who provide services to me) to be based on common decency and courtesy and, yes, basic respect for fellow human beings. And quite frankly I felt that my sleep doc was treating me like a small child instead of an adult. It was personally insulting to me.

Maybe he is trying to get you to stop acting like a child.

robysue wrote:Finally I also maintain that since ALL my sleep doctor has done for me is diagnose the apnea and prescribe a CPAP machine set at 9cm, he has most certainly NOT fixed me and he has NOT cured my sleep apnea. In spite of his behavior towards me, he has given me a chance to learn to effectively manage this disease by using a CPAP machine. But the management of this disease is ultimately in my hands, not his,

You know, from everything that you have told me, I doubt that your treatment was ever in his hands.

robysue wrote:since I'm the one that must make the conscious decision every single night of my life to put the CPAP mask on and use the machine. And that fact remains true whether I've got a brick or a full data machine; whether I pepper my doctor with questions or not; whether my doctor meets with me to discuss the efficacy of my treatment or not; and whether my doctor thinks I'm an idiot or not.

I am most grateful that you are NOT my sleep doctor.

I would never have taken you as a patient. I would never have taken you because I do not believe you were ever looking for a Doctor.

In response to my statement, calist:

I feel I am too emotionally distraught to talk to the doctor in a rational fashion

This statement right here is the core of the disconnect between physicians and patients. Patients are emotionally charged and they expect everyone else around them to be as well but in order to actually approach, handle and control a medical condition you need to take all emotion and put it up on the shelf. You have to have a clear head 24/7.

In a genuine life-and-death emergency situation, yes, you do want and need a team of doctors and nurses to "put all emotion on the shelf" and deal with the emergency medical issues.

But in non-medical emergencies I'm not so sure that doctors who "take all emotion and put it up on the shelf" are really doing their patients a favor. Yeah, sure the doctor needs to be non-emotionally involved. But I do believe that he absolutely must accept and deal with his patient's emotional state in a positive, professional manner rather than ignoring it or simply dismissing it as unimportant or, even worse, as a mental or moral failing on the patient's part.

And sleep apnea is not a medical emergency. It is, however, a serious, life-changing medical diagnosis for a patient to face. And it is completely unreasonable for a doctor to assume a symptomless patient who receives a serious, life-changing, but non-emergency diagnosis to be rational 24/7 while learning to cope with the newly diagnosed disease. Add in the fact that I am currently severely sleep deprived because of problems adjusting to the prescribed treatment and it then is downright insulting to believe that I can and should be clear headed 24/7. That's why I brought my husband to my first appointment with the sleep doctor and why he will be coming with me to the followup appointment as well.

And it's simply untrue that doctors "take all (the patient's) emotion and put it on the shelf" to deal with their patients' medical needs. For example, the best OB/GYN's know that pregnancy is a wild roller coaster of hormones, mood swings, fatigue, wild emotional highs and lows, hope, and fear for their patients. And they learn to deal courteously and respectfully with pregnant patients who are having bad days (and weeks and months) and who are emotional and cannot think clearly and rationally during their appointment, let alone think clearly 24/7. I had such a OB for both of my pregnancies. My pregnancies were utterly routine pregnancies, but he always treated me with respect and conveyed that when he was with me, I was his top priority. When I broke down in tears in his office during my second pregnancy because of a totally irrational fear, he did NOT tell me I was being silly or call me names or insult me. Rather he gave me some kleenex so that I could dab at my eyes and nose, but he did not expect me to quit crying. He let me know that it was ok for me to be crying in his office. And then he politely, gently and kindly informed me that he could understand where my fear was coming from, but that the chances of a second long back labor were not that great. And he then asked me what else had bothered me the about my first labor and took notes on what I said in order to minimize the chances of those particular things (such as being tied down on my back by an unnecessary fetal monitor) occurring again in my second labor. In other words, he respected my emotional state rather than dismissing it outright.

Likewise, three summers ago I was diagnosed with a necrotizing sialometaplasia by an ENT. Although this is a benign, self-limiting condition, it is also extremely painful, and it turns out that certain kinds of oral cancer display many of the same symptoms. At the start of this problem, the pain was excruciating and after taking one look at my mouth, he could tell he really didn't know what was going on, but that it looked bad: His office made an emergency referral to an ENT who could see me that afternoon. So obviously I was emotionally upset and pretty worried by the time I got to the ENT's office. At that first appointment, the ENT recommended watchful waiting since I was such an unlikely candidate for oral cancer and a small biopsy. At both this first meeting and subsequent follow up ones, the ENT and his assistants were always patient with me, answered all my questions no matter how bizarre, and really listened to what I was saying about possible new symptoms and the prescribed pain medicines and whether they were working. Again, I felt like this ENT respected me as a person enough to tell me sufficient detailed information both about what he thought was going on, what might under really bad circumstances might be going on, and why he thought what he did about my condition. He also acknowledged my pain and emotional state as being real and assured me that it was understandable given what I was going through. So this doctor too respected my emotional state rather than dismissing it outright.

So I repeat: Calist, I'm really grateful you are NOT my doctor.

Was it bumped up from 7cwp or 8cwp? Did the tech go up by 1 or 2 points? Some techs will increase by 1cwp for comparison at the end of the study.

Really what you need to look for in the study is Supine REM. The pressure that eliminated all events in supine REM is the pressure that fixes you. Supine REM is like the superbowl of titrations. If you went into supine REM at 430am and he fixed you on 9cwp then that is your pressure. I wish I could get a scan of that report though you probably don't have a scanner. How about this. What was your AHI during the last instance of supine REM and what was the pressure you were on during that period?

In the baseline study, my only REM sleep was on my right side. Total REM time 24 minutes. In REM there were NO apneas of any type detected and there were NO hypopneas with desaturation detectd. There were 7 hypopneas with arousal detected. REM AHI = 0.0 [The center scores AHI as (#apneas + #hypopneas with desaturation) per hour]. REM RDI = 17.5 [The center scores RDI = (#apneas + #hypopneas with desaturation + #hypopneas with arousal) per hour].

In the baseline study I was only in the supine position for 30 minutes, none of which was REM sleep. [Indeed, I was in Stage 2 the whole time I was supine in the base study.] Supine events include 7 events, which are not broken down into type on the short version of the sleep report. The RDI for the supine position is listed as 15.3.

In the titration study, except for the last pressure change, the tech was incrementing pressure in 1cm increments in response to events. There are two REM stages, both of which occurred on my left side. Total REM time is approximately 45 minutes. During the first 35-minute long REM, pressure was increased from 6cm to 7cm in response to events occurring. Pressure remained at 7cm throughout the second 10-minute long REM. There are no scored respiratory events during this second short REM. But the second REM does end with a sudden transition from REM to WAKE to Stage 2 that clearly does NOT correspond to any scored apnea, hypopnea with desat, hypopnea with arousal, limb movement, position change, or pressure change. I stayed in Stage 2 for the rest of the night. At 4:27AM, approximately 30 minutes after the last REM ended, three things happen in such close proximity as to appear nearly simultaneous, but a really close reading of all the data seems to indicate they happen in this order: (1) I move to a supine position; (2) there is a cluster of 5 respiratory events, including at least one OA and at least one hypopnea with arousal (but no hypopneas with desaturation, central apneas, or complex apneas); and (3) the tech changes the pressure from 7cm to 9cm. At any rate, I'm on my back at 9cm in Stage 2 sleep from 4:27 until 5:00, when the study ends. After the pressure is changed to 9cm, there are no more respiratory events of any sort.

The titration report lists REM RDI = 2.8 at 7cm and REM RDI = 0.0 at 6cm. [This does not make sense to me since the events scored during the first REM appeared to happen at 6cm and there are no events scored during the second shorter REM.]

The titraion report lists the total Supine RDI = 8.6, but does not break it down between pressures.

The titration report lists RDI = 0.0 at CPAP=9 and that would be the supine RDI for pressure = 9cm since that's the only position I was in during the last 33 minutes of the sleep study when the pressure was at 9 cm.

My prescription is CPAP at 9 cm based, I suppose, on that last 33 minutes of the study when I'm on my back in Stage 2 sleep.

I have every reason to believe that the total time spent on my back in both studies is actually pretty typical of my ordinary sleep patterns: I don't like falling asleep on my back at all since it makes my lower back hurt. And if I do fall asleep on my back, I usually turn over onto my side pretty quickly. I hardly ever remember waking up on my back unless I had a severe head cold with a really runny nose. I don't have much preference for which side I sleep on. Previous to starting CPAP, the side that I'd be on would depend very much on whether my nose was stuffy and if so, which nostril was more stuffed up so to speak. If nasal congestion was not a problem, my preference for side would depend on the position my husband was sleeping in and which side of the bed I was on.

robysue wrote:In a genuine life-and-death emergency situation, yes, you do want and need a team of doctors and nurses to "put all emotion on the shelf" and deal with the emergency medical issues.

I can see where you are coming from but a good doctor must assume that everything is a possible life and death situation. A patient comes in with a headache, you give him a smile and a Tylenol and he drops dead from a brain hemorrhage. A second patient comes in after him with a headache and you are going to order CT scans, MRIs and exploratory surgery.

robysue wrote:But in non-medical emergencies I'm not so sure that doctors who "take all emotion and put it up on the shelf" are really doing their patients a favor.

Why is a doctor involved in non-medical emergencies? Hehe- I know what you mean.

robysue wrote:Yeah, sure the doctor needs to be non-emotionally involved. But I do believe that he absolutely must accept and deal with his patient's emotional state in a positive, professional manner rather than ignoring it or simply dismissing it as unimportant or, even worse, as a mental or moral failing on the patient's part.

There are in fact doctors who do exactly what you are describing. They accept and they deal with a patient's emotional state in a positive, professional manner rather than dismissing it. They are called Psychologists. Medical doctors do not want to be Psychologists. They are there to treat a different part of the body and here is the crux of the problem. Emotional states will often obscure medical urgency which is why a physician needs to quickly cut through everything non-medical to protect the patient's body from the patient's emotional state. Patients will often present themselves in a way which is contrary to real life. When they meet a new person they will brag about their accomplishments, lie about their past, smile when there is no reason to and blow small things out of proportion while they themselves are ignoring something which is about to threaten their life.

A good physician is some one who marks everything which is irrelevant as irrelevant and focuses completely on the physical problems of the patient in an attempt to prevent further damage and to correct current damage. I have, in the past known poor physicians. I won't name any names, but I have none some physicians that were not all that great at diagnostics. In order to make up for this they will attempt to entertain a patient, talk to them about football or baseball or tell them a story about something funny that their cat did. They basically stall for time while they desperately try to figure out what is going on with the patient.

I knew one guy that talked to his patient for a good thirty minutes about something they had both apparently seen on TV. When he came out of the patients room I said (I had been watching on the monitor) "Type II, stage 3, A-V heartblock." He looked at me, a little shocked for a moment because he was so busy chatty with the patient that he hadn't even thought to look. Then he glanced over at a book of arrhythmia we have sitting on the shelf and reached for it when I said "It's not lethal."

What happens after that is what happens in all hospitals. You have the attractive, super personable clown doctor who runs around with an expensive tie entertaining the patients because he sucks at memory retention and critical thinking. Then, after gathering a decent history he walks down the hall and shows it to a less personable but highly respected individual that doesn't want to see patients and asks him what he thinks. In a situation like that (of which there many, not mentioning no names) you as the patient are not actually even seeing your doctor. What you get is a middle man who is there to entertain you while some one that knows their stuff makes decisions about you in a back room some where. This is then related to you as a treatment plan by your middle man and it becomes his job to convince you of it even if he does not fully understand it himself.

Most sleep labs have a list. Well, I should say, all decent sleep labs have a list of which doctors are allowed to reffer directly to the lab and all others must undergo evaluation. This is to prevent problems. I've worked at labs where they did not have a list and the end result is chaos. Patient comes in, problems breathing at night is the primary symptom. Patient is referred to the lab and scheduled. Patient shows up and reports his or her medication list on the questionnaire as Temazepan and Methadone. Two incredible respiratory suppressants. Cancel the sleep study and send the patient back to the doctor that referred him or her with the med sheet circled in red pen. You get other ones as well, patients with active, undiagnosed pneumonia. Problems sleeping? I wonder why. You get patients with undiagnosed diabetes that go into shock in the middle of the night. This is why you make a list of referring physicians that are allowed to submit directly to the lab and everyone else you reevaluate. Charts will go to the sleep tech or the physicians desk based solely on who referred them.

robysue wrote:And sleep apnea is not a medical emergency.

This is really what started this debate in the first place. Who are you to say that sleep apnea is not a medical emergency? Headaches can turn out to be a brain tumor, a stomach ache can turn out to be appendicitis, a sinus infection can turn out to be Ebola for crying out loud. You have to treat EVERYTHING like it is a medical emergency or else you will never be able to catch medical emergencies.

robysue wrote:It is, however, a serious, life-changing medical diagnosis for a patient to face. And it is completely unreasonable for a doctor to assume a symptomless patient who receives a serious, life-changing, but non-emergency diagnosis to be rational 24/7 while learning to cope with the newly diagnosed disease.

You are correct. It is unreasonable for a doctor to assume that a patient will be rational. You must always assume that your patient is about to do the most irrational thing they can think of.

robysue wrote:Add in the fact that I am currently severely sleep deprived because of problems adjusting to the prescribed treatment and it then is downright insulting to believe that I can and should be clear headed 24/7.

No physician should ever expect his patient to be clear headed.

robysue wrote:That's why I brought my husband to my first appointment with the sleep doctor and why he will be coming with me to the followup appointment as well.

He is seeing you for a follow-up? Not only does he meet you in person the first time but then he meets you again? Who is this guy? Do you have compromising pictures of him in a hotel or something?

robysue wrote:And it's simply untrue that doctors "take all (the patient's) emotion and put it on the shelf" to deal with their patients' medical needs.

Correct, only good doctors take all the patients emotion and put it on the shelf. New doctors or bad doctors will often consider a patient's emotions (or at least pretend to) in order to hide the fact that they do not know what they are doing.

robysue wrote:For example, the best OB/GYN's know that pregnancy is a wild roller coaster of hormones, mood swings, fatigue, wild emotional highs and lows, hope, and fear for their patients. And they learn to deal courteously and respectfully with pregnant patients who are having bad days (and weeks and months) and who are emotional and cannot think clearly and rationally during their appointment, let alone think clearly 24/7. I had such a OB for both of my pregnancies. My pregnancies were utterly routine pregnancies, but he always treated me with respect and conveyed that when he was with me, I was his top priority. When I broke down in tears in his office during my second pregnancy because of a totally irrational fear, he did NOT tell me I was being silly or call me names or insult me. Rather he gave me some kleenex so that I could dab at my eyes and nose, but he did not expect me to quit crying. He let me know that it was ok for me to be crying in his office. And then he politely, gently and kindly informed me that he could understand where my fear was coming from, but that the chances of a second long back labor were not that great. And he then asked me what else had bothered me the about my first labor and took notes on what I said in order to minimize the chances of those particular things (such as being tied down on my back by an unnecessary fetal monitor) occurring again in my second labor. In other words, he respected my emotional state rather than dismissing it outright.

Once again "only good doctors take all the patients emotion and put it on the shelf. New doctors or bad doctors will often consider a patient's emotions (or at least pretend to) in order to hide the fact that they do not know what they are doing."

I mean honestly here, we are talking about people that go to school for ten years so they can make 40k/per year while getting sued each and every single day by all of their hyper-emotional post birth mothers. This was not the best career move.

robysue wrote:Likewise, three summers ago I was diagnosed with a necrotizing sialometaplasia by an ENT.

Hold on, let me look that up.

robysue wrote:Although this is a benign, self-limiting condition, it is also extremely painful

Yeah it really looks painful. Everyone take a look at this....

http://emedicine.medscape.com/article/1077574-overview

robysue wrote:, and it turns out that certain kinds of oral cancer display many of the same symptoms. At the start of this problem, the pain was excruciating and after taking one look at my mouth, he could tell he really didn't know what was going on, but that it looked bad: His office made an emergency referral to an ENT who could see me that afternoon.

He was the doctor that holds patients hands when they cry and he referred you to the guy he knew was going to fix you. Classic.

robysue wrote:So obviously I was emotionally upset and pretty worried by the time I got to the ENT's office. At that first appointment, the ENT recommended watchful waiting since I was such an unlikely candidate for oral cancer and a small biopsy.

He suspected what it was but was afraid to say it since it was so rare. He wanted to wait for symptoms either way. Smart guy.

robysue wrote:At both this first meeting and subsequent follow up ones, the ENT and his assistants were always patient with me, answered all my questions no matter how bizarre, and really listened to what I was saying about possible new symptoms and the prescribed pain medicines and whether they were working. Again, I felt like this ENT respected me as a person enough to tell me sufficient detailed information both about what he thought was going on, what might under really bad circumstances might be going on, and why he thought what he did about my condition. He also acknowledged my pain and emotional state as being real and assured me that it was understandable given what I was going through. So this doctor too respected my emotional state rather than dismissing it outright.

and then they never write.

robysue wrote:So I repeat: Calist, I'm really grateful you are NOT my doctor.

[/quote]

Yeah.... me too. But consider this.... the next time you walk into YOUR doctor's office and show him something he can not diagnose- who is he going to call?

To calist,

You continue to act like I am an idiot, which I am not. You accuse me of not really wanting a doctor to treat my condition. You cannot be farther from the truth.

And yes, my sleep doctor met with me. And he routinely meets with all his new patients sometime between their two sleep studies and again a few weeks after starting treatment. And for my sake, I hope that he intends on meeting with me at least once every year or so just to make sure that my therapy really is still working and to make any needed adjustments if it is not.

But at that first meeting he treated me like a kid because I had the audacity to ask him about adjustment problems to a therapy know to have serious problems with compliance. Mind you, I was acting like an adult: I needed this information in order to help me be a better patient with a greater chance of adjusting to the therapy in a reasonable amount of time. Is it really too much to have expected my sleep doctor (or his nurse) to warn me that I might have to give up driving for a while because I might develop daytime sleepiness that I did not have before treatment? Is it too much to ask for my doctor (or his nurse) to tell me the two or three most common potential problems to look out for and what to do about them? And what kind of things indicate severe enough adjustment problems to warrant calling his office? Because none of those things were mentioned to me even though I tried to ask about them.

And now I'm the one dealing with adjustment problems in the form of severe insomnia on top of adjusting to the CPAP machine. I am 100% compliant so far---I've not been asleep without the CPAP on at all since Sept. 23 in spite of the insomnia. Of course, I'm severely sleep deprived, in part because I now have a very severe case of bedtime insomnia that I did not have this summer before starting on CPAP and in part because of simply feeling sleepier and more tired after sleeping all night with my CPAP on. I now have extreme daytime sleepiness which I did not this summer before starting on CPAP. So yeah, I don't feel like my sleep doc deserves any credit for fixing me up right now.

But I'll give his office some credit: At my husband's insistence that the sleep doctor be told my numerous symptoms and problems that have developed in the last two week while on CPAP we did call his office. And after a three-day long round of phone tag, I did get a chance to talk at length to one of my doctor's nurses this evening. And during that talk she did indicate that she would convey my concern over the insomnia to the doctor and that given my description of my eye symptoms and the bloating I've been having maybe my pressure does need to be adjusted and that she would have the office fax over an order to my DME on Monday to reset my machine for a home auto titration. So now that I'm having difficulties, they are willing to talk to me about information I need to help me be a better patient. I just wish it had happened earlier.

So calist, since you're so insistent that sleep doctors don't need to ever talk to their patients, just who should a sleep apnea patient ask when they have questions about their condition and their treatment that a nurse can't or shouldn't be responsible for answering? Who should a patient turn to for medical advice dealing with genuine medical problems such as insomnia, claustrophobia concerning the mask, and aerophagia when trying to adjust to CPAP? And who should a patient who's having trouble adjusting ask for evidence that the therapy is actually working? And who should a patient turn to if they believe the therapy is no longer working as well as it once was based on how they're feeling in the morning?

robysue wrote:

Was it bumped up from 7cwp or 8cwp? Did the tech go up by 1 or 2 points? Some techs will increase by 1cwp for comparison at the end of the study.

Really what you need to look for in the study is Supine REM. The pressure that eliminated all events in supine REM is the pressure that fixes you. Supine REM is like the superbowl of titrations. If you went into supine REM at 430am and he fixed you on 9cwp then that is your pressure. I wish I could get a scan of that report though you probably don't have a scanner. How about this. What was your AHI during the last instance of supine REM and what was the pressure you were on during that period?

In the baseline study, my only REM sleep was on my right side. Total REM time 24 minutes.

Every patient (during a normal nights sleep) will make at LEAST five attempts at REM. In healthy sleep this means five lengthy REM stages. The fact that you were in REM for less than 24 minutes total does not bode well unless of course you could only maintain REM at the end of the night due to pressure increase.

robysue wrote:In REM there were NO apneas of any type detected and there were NO hypopneas with desaturation detectd. There were 7 hypopneas with arousal detected. REM AHI = 0.0 [The center scores AHI as (#apneas + #hypopneas with desaturation) per hour]. REM RDI = 17.5 [The center scores RDI = (#apneas + #hypopneas with desaturation + #hypopneas with arousal) per hour].

That is not AASM standard, they should not be using RDI.

robysue wrote:In the baseline study I was only in the supine position for 30 minutes, none of which was REM sleep. [Indeed, I was in Stage 2 the whole time I was supine in the base study.] Supine events include 7 events, which are not broken down into type on the short version of the sleep report. The RDI for the supine position is listed as 15.3.

I am actually going to stop you right there. The place that you went to is what we call a 'CPAP factory'. You may or may not have OSA but the place where you ended up unfortunately was a lab of ill-repute. There is something that you need to understand so I am going to say it very carefully as I don't want to steer you in the wrong direction.

Never speak to anyone associated with that lab ever again. Not the sleep doc, techs, secretary and especially not the doctor that sent you there. The person that referred you there knowingly sent you to an unaccredited lab. That is unforgivable. Call up your insurance and get another doctor. Now I'm not telling you to discontinue CPAP use, what I am telling you to do is to bring this to the attention of a physician who can direct you to a lab that is AASM accreditted that can get you a proper diagnosis. An AHI of zero and an RDI of 99999999999999999999999999999999999999999999999999999999999999999999999999999999 is not a diagnosis of Obstructive Sleep Apnea. You need to avoid those people like the plague.

robysue wrote:To calist,

You continue to act like I am an idiot, which I am not. You accuse me of not really wanting a doctor to treat my condition. You cannot be farther from the truth.

And yes, my sleep doctor met with me. And he routinely meets with all his new patients sometime between their two sleep studies and again a few weeks after starting treatment. And for my sake, I hope that he intends on meeting with me at least once every year or so just to make sure that my therapy really is still working and to make any needed adjustments if it is not.

But at that first meeting he treated me like a kid because I had the audacity to ask him about adjustment problems to a therapy know to have serious problems with compliance. Mind you, I was acting like an adult: I needed this information in order to help me be a better patient with a greater chance of adjusting to the therapy in a reasonable amount of time. Is it really too much to have expected my sleep doctor (or his nurse) to warn me that I might have to give up driving for a while because I might develop daytime sleepiness that I did not have before treatment? Is it too much to ask for my doctor (or his nurse) to tell me the two or three most common potential problems to look out for and what to do about them? And what kind of things indicate severe enough adjustment problems to warrant calling his office? Because none of those things were mentioned to me even though I tried to ask about them.

And now I'm the one dealing with adjustment problems in the form of severe insomnia on top of adjusting to the CPAP machine. I am 100% compliant so far---I've not been asleep without the CPAP on at all since Sept. 23 in spite of the insomnia. Of course, I'm severely sleep deprived, in part because I now have a very severe case of bedtime insomnia that I did not have this summer before starting on CPAP and in part because of simply feeling sleepier and more tired after sleeping all night with my CPAP on. I now have extreme daytime sleepiness which I did not this summer before starting on CPAP. So yeah, I don't feel like my sleep doc deserves any credit for fixing me up right now.

But I'll give his office some credit: At my husband's insistence that the sleep doctor be told my numerous symptoms and problems that have developed in the last two week while on CPAP we did call his office. And after a three-day long round of phone tag, I did get a chance to talk at length to one of my doctor's nurses this evening. And during that talk she did indicate that she would convey my concern over the insomnia to the doctor and that given my description of my eye symptoms and the bloating I've been having maybe my pressure does need to be adjusted and that she would have the office fax over an order to my DME on Monday to reset my machine for a home auto titration. So now that I'm having difficulties, they are willing to talk to me about information I need to help me be a better patient. I just wish it had happened earlier.

So calist, since you're so insistent that sleep doctors don't need to ever talk to their patients, just who should a sleep apnea patient ask when they have questions about their condition and their treatment that a nurse can't or shouldn't be responsible for answering? Who should a patient turn to for medical advice dealing with genuine medical problems such as insomnia, claustrophobia concerning the mask, and aerophagia when trying to adjust to CPAP? And who should a patient who's having trouble adjusting ask for evidence that the therapy is actually working? And who should a patient turn to if they believe the therapy is no longer working as well as it once was based on how they're feeling in the morning?

I am starting to get a handle on your situation. Here is the underlying problem....

When an apnea patient is titrated they typically have very few problems and yes they will have questions regarding CPAP use and mask use and the like. These are usually answered by DME companies (which I disagree with) and the referring doctors that sent them. There is sort of a network of support for these individual people. The problem is that you were scammed.

Your referring doctor (for reasons unknown) sent you to this unaccredited lab. I know they are unaccredited because they are using RDI. Accredited labs are not permitted to use RDI. They list your AHI as zero.... which is REALLY suspicious and your RDI as 17.5, I have seen labs that do this. It is called Arousal based scoring and it is the most frowned upon practice in all of sleep science. It is designed to diagnose every patient who comes through the lab with OSA so that they can refer them to a DME company that they have a connection to.

Only some insurance companies will even allow their patients to go to unaccredited labs and typically the ones that do end up changing their policy (eventually). For a while what they would do is simply pay these labs less for the study and full price for a study done at an accredited lab. This was designed to get unaccredited labs to seek accreditation however the labs which were financially connected to DME companies did not seek accreditation because the financial incentive was not great enough to cover the losses they would take when they stopped arbitrarily diagnosing everyone with OSA and selling them equipment.

This is what I recommend you do.

Go to http://www.sleepcenters.org/ and find an AASM accredited lab in your area. Get their number out of the phone book at call them up at 1am in the morning. You'll get a sleep tech, ask to talk to the most senior tech there and when you get him/her on the line- tell them that you are looking for a physician that refers to accredited labs. He or she will probably talk your ear off at that point.

Sleep techs know who is legitimate and who is not in your town. They will point you in the right direction.