"please keep me updated about oximeters "
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To All the Pro's Here
I wanted to let the Pro's know why we are sometimes defensive about our treatment.
If you are a Pro here that is a very good thing!! We appreciate the time and effort it takes to read our posts and then to comment. You are probably actively helping your patients in seeking optimal treatment options for them and are doing follow-ups to make sure things are going good for them. That is a a very good thing. For that we salute you and thank you.
You are in the minority though -- and that is a bad thing.
You may think that all sleep professionals care as much as you do -- unfortunately that is not the case. Many, many of us have found the sleep professionals we deal with simply turn us loose with a machine and mask and they are done. We are forgotten the minute the next unsuspecting patient walks through the door or is on the other end of the phone line. The reason for this can vary and may or may not be obvious.
Sleep disorders is a fairly new field that is booming right now. Recognition of sleep apnea is still in its infancy and in the learning curve. Many doctors are jumping on the wagon to increase their profits and pocket books. Many of these "so called" sleep professionals may not have the proper training to be fully informed or simply do not care.
In our rural area we have one sleep doctor that serves approximately a 75 mile radius. Our local hospital established a two bed sleep lab within the hospital approximately 8 or 10 years ago. Not much, if any, publicity was given to it and many, including myself, didn't know it even existed. In 2007, the hospital ran a story about a new satellite 2 bed sleep lab they were setting up in a small community 30 miles south. This would allow them to have 4 sleep studies going on at a time. At the time I set up my first sleep study it took approximately 4 to 6 weeks to get an initial study done. Then at least that long to get a titration done if you had them done at the local hospital sleep lab. Since the satelitte lab was not yet ready I waited on the initial study, but was lucky and the new lab was ready when I had my titration done and so was able to get in the next week to do that portion.
The only information I really received was a few bits and pieces from the sleep techs that are not suppose to tell you anything since they are not qualified to "read the reports." No communication was done through the sleep doctor -- not a phone call, follow up, nothing. My PCP doesn't know alot about sleep apnea and tells me that I probably know as much as she does. What I have learned has been through networking on the net, reading up on sleep apnea and the different machines, talking with other patients, etc. I, for one do not trust the sleep industry to oversee my therapy as it has done a dismal time of it so far. My first DME was a shyster local mom and pop outfit that gave me the wrong machine, was adamant they knew what was best for me (after all what did my doctor know), and lead me down a trail of lies and half-truths. I soon fired them with the blessing of my PCP and insurance company and went with LIncare. I did get the right machine, set at the right pressure. Yet, not one follow-up has ever been done to see how my therapy is going. When I finally requested a new mask after a year (I had made many purchases in trying to find the "right mask" at my own expense on line). They tried to give me a mask that I knew wouldn't work for me and I refused it. I was given another option and was told it was either or. Not a lot of selection.
We do not mean to beat you up -- as I hope you don't mean to beat us up. It is just that so many of us have had to rely on ourselves to take charge of our therapy that we become defensive and do not like being told information that is inaccurate or "twisted". We already know YOU can't change our pressure without a script -- however we are perfectly capable of deciding if that is the correct decision for us to do on our own. I AM NOT advocating a newbie start winging dials just because they can. You need to be meticulous and thorough when making any SMALL change. Wait for a week or more before changing anything else. It is a slow process and should never be hurried.
Thank you sleep professionals for taking the time to care about our treatment options and trying to help us optimize our treatment so that we can lead productive lives. There are plenty of opportunities for us to coexist here on this forum and others -- we just need to respect each others views and positions.
If you are a Pro here that is a very good thing!! We appreciate the time and effort it takes to read our posts and then to comment. You are probably actively helping your patients in seeking optimal treatment options for them and are doing follow-ups to make sure things are going good for them. That is a a very good thing. For that we salute you and thank you.
You are in the minority though -- and that is a bad thing.
You may think that all sleep professionals care as much as you do -- unfortunately that is not the case. Many, many of us have found the sleep professionals we deal with simply turn us loose with a machine and mask and they are done. We are forgotten the minute the next unsuspecting patient walks through the door or is on the other end of the phone line. The reason for this can vary and may or may not be obvious.
Sleep disorders is a fairly new field that is booming right now. Recognition of sleep apnea is still in its infancy and in the learning curve. Many doctors are jumping on the wagon to increase their profits and pocket books. Many of these "so called" sleep professionals may not have the proper training to be fully informed or simply do not care.
In our rural area we have one sleep doctor that serves approximately a 75 mile radius. Our local hospital established a two bed sleep lab within the hospital approximately 8 or 10 years ago. Not much, if any, publicity was given to it and many, including myself, didn't know it even existed. In 2007, the hospital ran a story about a new satellite 2 bed sleep lab they were setting up in a small community 30 miles south. This would allow them to have 4 sleep studies going on at a time. At the time I set up my first sleep study it took approximately 4 to 6 weeks to get an initial study done. Then at least that long to get a titration done if you had them done at the local hospital sleep lab. Since the satelitte lab was not yet ready I waited on the initial study, but was lucky and the new lab was ready when I had my titration done and so was able to get in the next week to do that portion.
The only information I really received was a few bits and pieces from the sleep techs that are not suppose to tell you anything since they are not qualified to "read the reports." No communication was done through the sleep doctor -- not a phone call, follow up, nothing. My PCP doesn't know alot about sleep apnea and tells me that I probably know as much as she does. What I have learned has been through networking on the net, reading up on sleep apnea and the different machines, talking with other patients, etc. I, for one do not trust the sleep industry to oversee my therapy as it has done a dismal time of it so far. My first DME was a shyster local mom and pop outfit that gave me the wrong machine, was adamant they knew what was best for me (after all what did my doctor know), and lead me down a trail of lies and half-truths. I soon fired them with the blessing of my PCP and insurance company and went with LIncare. I did get the right machine, set at the right pressure. Yet, not one follow-up has ever been done to see how my therapy is going. When I finally requested a new mask after a year (I had made many purchases in trying to find the "right mask" at my own expense on line). They tried to give me a mask that I knew wouldn't work for me and I refused it. I was given another option and was told it was either or. Not a lot of selection.
We do not mean to beat you up -- as I hope you don't mean to beat us up. It is just that so many of us have had to rely on ourselves to take charge of our therapy that we become defensive and do not like being told information that is inaccurate or "twisted". We already know YOU can't change our pressure without a script -- however we are perfectly capable of deciding if that is the correct decision for us to do on our own. I AM NOT advocating a newbie start winging dials just because they can. You need to be meticulous and thorough when making any SMALL change. Wait for a week or more before changing anything else. It is a slow process and should never be hurried.
Thank you sleep professionals for taking the time to care about our treatment options and trying to help us optimize our treatment so that we can lead productive lives. There are plenty of opportunities for us to coexist here on this forum and others -- we just need to respect each others views and positions.
Views: 12
Replies to This Discussion
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Permalink Reply by BPLink on
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The doctor i went to was board certified, he was a diplomate (whatever that means) and he was President of something or other and ran the sleep center where I did my first titrations (without and then with mask) but he was a nasty person with an arrogant attitude although I noted that he knew how to come across impressive towards the people that counted for him.
I went to a different doctor after I got fed up, this one it turns out doesn't seem to care either and isn't board certified but at least she's polite.
The first doctor is board certified, he's a big man in the field but I get the feeling he knows more how to look like an expert than actully be an expert....................In short, I think he's a get over artist who wanted to go where the money was and was willing to do whatever work was needed only in order to become a leader in the field due to a need to be admired and a need to make as much as he can make....................He's a throughly unpleasant phony in my view and I could be wrong and it could be that he personally didn't like me but I don't think that was the reason, in my view he didn't like that I asked the tough questions and he took me as someone who could see through him and since he did have something to hide (he had more ignorance about sleep apnea than an expert should have and his dishonesty) his way out from a patient who cared about therapy, who saw that some of what he said to me didn't add up, was for him to pour out so much of his obnoxiousness so that I would wind up "firing" him as my doctor.
What kind of board certified doctor tells his patient that "no pap gives you a daily breakdown report of your nightly apneas" when the patient asks him for that kind of machine after he reads about the existance of such paps on a sleep apnea forum? And what kind of board certified doctor gets angry at the patient for making such a request? questions his nerve for making such a request? tells him not to believe apnea patients from on-line "chatrooms" and scornfully says "I'm a doctor, who are you going to believe? Them or me?"
Just one example of many from supposedly one of the "best" and "most qualified"..........liars or unqualified overachievers I guess.
I think very few sleep apnea doctors (whether board certified or veteran doctors or newcomers who aren't board certified) are as nasty, as uncaring, as threatened by questions from concerned patients as that guy is. I've never seen a doctor and very few professionals in any field as insecure, as phony, as pompous, as ready to fly off the handle as that guy.
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Permalink Reply by Mike on
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Amen. So much of the problem is one of communication. Sleep professionals -- not the ones on this forum, but by and large the majority out there -- don't follow up with their patients and monitor their progress. We patients find ourselves alone without any professional guidance. So I join Sleepy Carol in saluting the pros on this forum who establish a higher standard right here, not being afraid to say what they know, and often just as important, what they do not.
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How can we find the good ones, the ones who set and hold the highest standards? All the doctors sound good until they get their hooks into you and then show you their true neglectful, arrogant, moneygrubbing self, I'd like to find a doctor like the ones you are saluting and in fact those are the only kind of doctors who should be treating apnea patients; let the arrogant, greedy ones have no-one going to them so that they can finally close their offices down and go into research or somewhere else where they don't directly deal with patients.
The doctor I unfortunately saw was a diplomate board certified teacher and POLITICIAN who seemed to be interested in making a good impression on those in the field who could boost his reputation, as a doctor, he was lied to me, held my complete records back from me, was nasty, abusive and in fact one of the most useless doctors I ever saw.......I kind of got the feeling about him that he would have felt at home in the third reich.
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Permalink Reply by Judy on
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Ah, BPLink, I so recognize a kindred sleep doctor I encountered. Not quite so obnoxious and arrogant as "yours" - but bad enough. And I do get a chuckle out of their keeping our complete records from us. HIPAA isn't always quite as helpful as one would hope in that regard (like any legal gobblydeegook, our legislators left in a few loopholes). But if one is willing to stick to their guns and push hard enough and utilize HIPAA and the DHHS and mayb even invoke a "devious", tho NOT illegal, method we can usually outfox the buzzards. Depends on how much effort you want to put into it. I admit to "pushing the envelope" twice in my 67 years - just for pure spite.One cost me the best $1100 I ever spent. The other was free except for time and effort.
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Judy,
"Pushing the envelope"? I don't understand the context in which you are using the term and I'm not even sure what the term means but anyway I'd rather do my share to put the "buzzards" (actually the b-tards) out of the doctor/patient business by walking away from the kind of doctor I had and if word of mouth means anything, if I ever hear his name mentioned by anyone looking for an apnea doctor (he obviously has some kind of ego/financial greed need to be "known" as an "outstanding" and "knowledgeable" "leader").
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