Let's compare our overall impressions of the current "medical establishment" regarding how well they: 1) recognized our need for a sleep study or other relevant diagnostics 2) properly diagnosed us given the results of that diagnostic procedure, 3) administered effective therapy or treatment, and 4) administered suitable follow-up care.
We are rating the entire medical system from front to back on this survey. Just how functional or dysfunctional do you think the "system" is for sleep apnea candidates?
The medical system as a whole relative to apnea
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wading thru the muck!
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- Joined: Tue Oct 19, 2004 11:42 am
I made my choice based on the worst case links of the chain of treatment. If the quality of care is not consistant throughout the treatment chain, the bad link results in faluire of the whole process.
In my own experience I am still shocked to recall the day my nomally excellent PCP shrugged his shoulders regarding the specifics of what turns out to be, for me, a relatively simple treatment.
I blame the high cost of sleep lab diagnosis and local DME equipment procurement for the low volume diagnosis and treatment rates that cause this disease to less known that it should be.
In my own experience I am still shocked to recall the day my nomally excellent PCP shrugged his shoulders regarding the specifics of what turns out to be, for me, a relatively simple treatment.
I blame the high cost of sleep lab diagnosis and local DME equipment procurement for the low volume diagnosis and treatment rates that cause this disease to less known that it should be.
Sincerely,
wading thru the muck of the sleep study/DME/Insurance money pit!
wading thru the muck of the sleep study/DME/Insurance money pit!
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rested gal
- Posts: 12881
- Joined: Thu Sep 09, 2004 10:14 pm
- Location: Tennessee
I chose somewhat worse than mediocre, but the more I think about the very front end (doctors in general not recognizing signs of sleep apnea) and the DME end (giving people such terrible masks most of the time and so little follow-up), I wish I had clicked "Poor". Even the part in the middle when people get sleep studies - even that can be a mess. Hmm... if I keep thinking about it, I'll wish I had clicked dysfunctional!!
Online cpap supply stores and message boards may be the only bright spots out there that really, truly help OSA sufferers.
Online cpap supply stores and message boards may be the only bright spots out there that really, truly help OSA sufferers.
I have suffered with OSA for at least the past five years with the last two being intense. I have endured the last twelve months off misdiagnosis. If not for my being proactive in doing research the system would still be telling me I was suffering extreme depression and attempting to place my on yet another marvelous wonder drug. My final diagnosis was made by my relentless pressure on my health care provider who still thought I was incorrect. Go figure!
SWS -- I think one key point to your poll question is the word "impression."
Since most of us seem to go it alone, know little about the OSA medical profession, and know no one else who has gone through the same thing, our singular impressions are limited. It's only through comparison of our experience with those of others (like here on our forum), when we see just how this profession is doing overall. My "impression" is initially limited to my own experience, and even that is hard to judge without comparing it to others.
But I guess for heart conditions, diabetes, cancer, intestinal problems, etc., even depression, the medical establishment is far more equipped and willing to dispense help, diagnosis, information and referral.....as quick as you say "horse hockey." Not so for OSA. So by comparing my experience with the general world of medical help, I'd rate my experience as mediocre to poor (but I had a better experience than most, but still bad). But after hearing others' experiences relative to mine, I'd tend to vote my "impression" of the field of OSA as dismal, like rested gal wanted to do.
I think those of us living in big cities may have an advantage, at least of choices. I often wonder about those who live in areas where choices of medical resources are less available.
Linda
Since most of us seem to go it alone, know little about the OSA medical profession, and know no one else who has gone through the same thing, our singular impressions are limited. It's only through comparison of our experience with those of others (like here on our forum), when we see just how this profession is doing overall. My "impression" is initially limited to my own experience, and even that is hard to judge without comparing it to others.
But I guess for heart conditions, diabetes, cancer, intestinal problems, etc., even depression, the medical establishment is far more equipped and willing to dispense help, diagnosis, information and referral.....as quick as you say "horse hockey." Not so for OSA. So by comparing my experience with the general world of medical help, I'd rate my experience as mediocre to poor (but I had a better experience than most, but still bad). But after hearing others' experiences relative to mine, I'd tend to vote my "impression" of the field of OSA as dismal, like rested gal wanted to do.
I think those of us living in big cities may have an advantage, at least of choices. I often wonder about those who live in areas where choices of medical resources are less available.
Linda
I think that the system has been 'poor' in my case. I have had 3 sleep studies, one in the late 80's, the 2nd in the mid 90's, and the 3rd Jan/05.
My doctors have all agreed that I have a sleep disorder but they just did not know what treatment I needed. The first 2 studies I was told that 'I never get deep sleep' therefore my body could not heal itself at night the way it was supposed to. The doctor's both told me that I had to take medicine to get my body to go into the deep sleep mode. For this I was prescribed 'trazodone', of course we know that is an anti-depressant.
This latest study showed that I have 'severe sleep apnea' and the doctor has me on my new bed buddy, CPap machine.
If my true condition had been known years ago maybe..just maybe I would have never gotten this bad. You guess
My doctors have all agreed that I have a sleep disorder but they just did not know what treatment I needed. The first 2 studies I was told that 'I never get deep sleep' therefore my body could not heal itself at night the way it was supposed to. The doctor's both told me that I had to take medicine to get my body to go into the deep sleep mode. For this I was prescribed 'trazodone', of course we know that is an anti-depressant.
This latest study showed that I have 'severe sleep apnea' and the doctor has me on my new bed buddy, CPap machine.
If my true condition had been known years ago maybe..just maybe I would have never gotten this bad. You guess
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Guest
2Listless is actually my name!!
Had my first sleep study BEFORE I even met the sleep "doctor". They had an opening and called me in - I was totally unprepared. I stayed for 7 hours and slept 13 minutes. How many ways can I say insomnia? Met the doctor 2 days later. He did not show me the report. Told me I had 46 apneas an hour. I asked him how he figured that out. Response "mathematical calculation". He then proceeded to give me the very "intensive physical" that was described in the brochure - he looked in my mouth - I did not even have to say ahhhhhhh. Scheduled me for a titration study - 4 days later I am back. This time they said I slept for 30 minutes. At 4AM, I told them I was leaving. The sleep tech said to me "why did they not just put a big label on your file that said INSOMNIA?"
2 days later, the DME delivered the CPAP (no humidifier) and a NASALAIRE. Said here is the on and off button, just put the cannula in your nose - bye. That was my personalized mask fitting. 3 days later I was suffering nasal hemmorhages. After 3 surgeries to stop the bleeding and pulling 300 feet of gauze out of my nose about 15 times, the ENT surgeon said, never ever use anything like that again - you have severe allergies and are on a course of nasal sprays that thin the membranes, you have a deviated septum and you have asthma - they should have known better than to use anything like that on you. Back to sleep doctor after being off CPAP for 3 months - he has received report from ENT surgeon and is not happy. He orders the Vista. DME comes to house and hands me the, you guessed it, Activa. They kept me on straight CPAP for 6 months set on 8 - after that, he said, well let's go to 10 - they had you there at the titration - duh! They finally did an auto titration at home because I told him "when hell freezes over"! I am now on Auto with CFLex and oxygen support - machine was set for 8 -10, then 5 -12 - thanks to Rested Gal and the other wonderful members of this forum, I have adjusted my levels gradually. In December, the sleep doctor told me, "ok, at this point we will not see you for a year." The DME recently brought me the vista and handed it to me in a plastic bag - that was my next personalized fitting. Like the rest of you, I have decided to fend for myself. They do not know what they are doing - they think that certain problems and areas are being handled by "someone else" when in actuality, no one is doing anything. The care is nonexistent, there is no support system and the DME just wants to make big bucks.
SWS, I need a lower level, something lower than dysfunctional - how about "I WILL GO BACK TO THE SLEEP DOC AND DME WHEN HELL FREEZES OVER!!!!!!!!"
2 days later, the DME delivered the CPAP (no humidifier) and a NASALAIRE. Said here is the on and off button, just put the cannula in your nose - bye. That was my personalized mask fitting. 3 days later I was suffering nasal hemmorhages. After 3 surgeries to stop the bleeding and pulling 300 feet of gauze out of my nose about 15 times, the ENT surgeon said, never ever use anything like that again - you have severe allergies and are on a course of nasal sprays that thin the membranes, you have a deviated septum and you have asthma - they should have known better than to use anything like that on you. Back to sleep doctor after being off CPAP for 3 months - he has received report from ENT surgeon and is not happy. He orders the Vista. DME comes to house and hands me the, you guessed it, Activa. They kept me on straight CPAP for 6 months set on 8 - after that, he said, well let's go to 10 - they had you there at the titration - duh! They finally did an auto titration at home because I told him "when hell freezes over"! I am now on Auto with CFLex and oxygen support - machine was set for 8 -10, then 5 -12 - thanks to Rested Gal and the other wonderful members of this forum, I have adjusted my levels gradually. In December, the sleep doctor told me, "ok, at this point we will not see you for a year." The DME recently brought me the vista and handed it to me in a plastic bag - that was my next personalized fitting. Like the rest of you, I have decided to fend for myself. They do not know what they are doing - they think that certain problems and areas are being handled by "someone else" when in actuality, no one is doing anything. The care is nonexistent, there is no support system and the DME just wants to make big bucks.
SWS, I need a lower level, something lower than dysfunctional - how about "I WILL GO BACK TO THE SLEEP DOC AND DME WHEN HELL FREEZES OVER!!!!!!!!"
sorry about the long post
I have had a better experience than many. I have to start by saying that the biggest obstacle to my treatment is me. For years I have gone to the doctor and never mentioned any of the symptoms that would lead to sleep apnea. My wife told me about sleep apnea but I honestly thought that I was being lazy, out of shape, fat, and that nothing was really wrong with me. My doctor, during a routine physical (my dear wife kind of pushed me into the physical – remember, there was nothing really wrong with me), asked me some rather pointed questions (I believe my dear wife, who is a patient of the same doctor, had something to do with the questions) such as if I snored, how tired I was during the day, etc. As I answered her questions, she told me a little about sleep apnea – a condition I knew nothing about – and told me that she wanted to send me to an ENT specialist.
The ENT examined me for about 30 minutes with probes down me, throat, etc. and told me more about sleep apnea. He explained various options such as surgery, etc. He also explained to me that even if I lost weight I would still have sleep apnea. So he scheduled a sleep study.
I went off to the sleep study and had a miserable experience – I remember thinking that even if I had sleep apnea there was no say that I could tolerate the treatment via CPAP. I went back, received my shocking results – remember, there was nothing really wrong with me, that I had a severe case of OSA. So, at this point I realized that I was suffering from something that was serious enough to significantly reduce my life expectancy and actually kill me – maybe I really did have something wrong with me after all.
That night I went home, found this forum, and started reading the stories of others. It was like a revelation for me – I could actually see what was happening to me over the years through the experiences of others on this board. A couple of weeks later the DME called me, I went to pick up my APAP, went through a few didn't combinations of equipment, and went home with an APAP and mask (ResMed Spirit auto and ResMed Swift mask). I have had great luck – I have been able to wear my mask through the night, gotten good results (I've gone in and seen a respiratory therapist who downloaded data from my machine – I went from 101 disturbances an hour to 3.3 per hour).
Even now I am still my biggest obstacle – I actually think every night that I can really get by without the equipment that night and toy with the idea of not using it. That is why I continue to visit this forum – all of you help me keep grounded to the reality that this is a life long therapy that I have to comply with.
Anyway – for me, from suspected sleep apnea to diagnosis to receiving my equipment took about 5 months. I read stories about people who wait for a year for a sleep study alone. My medical experience was great.
Scott
The ENT examined me for about 30 minutes with probes down me, throat, etc. and told me more about sleep apnea. He explained various options such as surgery, etc. He also explained to me that even if I lost weight I would still have sleep apnea. So he scheduled a sleep study.
I went off to the sleep study and had a miserable experience – I remember thinking that even if I had sleep apnea there was no say that I could tolerate the treatment via CPAP. I went back, received my shocking results – remember, there was nothing really wrong with me, that I had a severe case of OSA. So, at this point I realized that I was suffering from something that was serious enough to significantly reduce my life expectancy and actually kill me – maybe I really did have something wrong with me after all.
That night I went home, found this forum, and started reading the stories of others. It was like a revelation for me – I could actually see what was happening to me over the years through the experiences of others on this board. A couple of weeks later the DME called me, I went to pick up my APAP, went through a few didn't combinations of equipment, and went home with an APAP and mask (ResMed Spirit auto and ResMed Swift mask). I have had great luck – I have been able to wear my mask through the night, gotten good results (I've gone in and seen a respiratory therapist who downloaded data from my machine – I went from 101 disturbances an hour to 3.3 per hour).
Even now I am still my biggest obstacle – I actually think every night that I can really get by without the equipment that night and toy with the idea of not using it. That is why I continue to visit this forum – all of you help me keep grounded to the reality that this is a life long therapy that I have to comply with.
Anyway – for me, from suspected sleep apnea to diagnosis to receiving my equipment took about 5 months. I read stories about people who wait for a year for a sleep study alone. My medical experience was great.
Scott
Scott,
What a wonderful account of what you went through.
Remember, though, it was your wife who likely influenced your doctor to ask those questions. I wonder if the doctor would have asked them anyway, during this routine exam. But it's understandable if the doctor didn't. For even if the doctor asked how you were doing, you might not have offered the symptoms. Did you have the severe exhaustion and did that exhaustion affect parts of your life in new ways? In my case the exhaustion did, enough for me to pester my doctor with descriptions of my worried symptoms. If your exhaustion didn't seem out of the ordinary to you, then you might not have pestered the doctor either. So it was great you should be now getting the medical help you needed.
Most of us have ignored even the best suggestions that we might have OSA. My doctor only casually mentioned it, and I ignored it. Then he plum forgot asking me, a year later. For that year he was treating symptoms, and never pressed the OSA idea. Wish he had, so I might have gotten relief a year earlier. Had he insisted, I might have been convinced to go. But I guess we all shouldn't beat ourselves up over it. Just be glad we got help finally. ........ But how many out there aren't as lucky, don't have supportive partners, or questioning doctors? ....Thanks for your story. I enjoyed reading it.
Linda
What a wonderful account of what you went through.
Remember, though, it was your wife who likely influenced your doctor to ask those questions. I wonder if the doctor would have asked them anyway, during this routine exam. But it's understandable if the doctor didn't. For even if the doctor asked how you were doing, you might not have offered the symptoms. Did you have the severe exhaustion and did that exhaustion affect parts of your life in new ways? In my case the exhaustion did, enough for me to pester my doctor with descriptions of my worried symptoms. If your exhaustion didn't seem out of the ordinary to you, then you might not have pestered the doctor either. So it was great you should be now getting the medical help you needed.
Most of us have ignored even the best suggestions that we might have OSA. My doctor only casually mentioned it, and I ignored it. Then he plum forgot asking me, a year later. For that year he was treating symptoms, and never pressed the OSA idea. Wish he had, so I might have gotten relief a year earlier. Had he insisted, I might have been convinced to go. But I guess we all shouldn't beat ourselves up over it. Just be glad we got help finally. ........ But how many out there aren't as lucky, don't have supportive partners, or questioning doctors? ....Thanks for your story. I enjoyed reading it.
Linda
I vote poor
Have we heard a ''lot'' of ''savvy sleep apnea knowledgable" doctor stories?
I think NOT.
Even the sleep doctors don't rate as high as I'd think, as they're in cohoots with the DME/RT's $$ when the dollar train starts chugging for ka-ching in the ole dr. pocket!
I don't sound too cynical do I? ha....
I think NOT.
Even the sleep doctors don't rate as high as I'd think, as they're in cohoots with the DME/RT's $$ when the dollar train starts chugging for ka-ching in the ole dr. pocket!
I don't sound too cynical do I? ha....
I feel very fortunate, my experience has been excellent compared with others. I had a sleep study in the early 80"s but never followed up on it. But my deear wife who has put up with extremley loud snoring, leg kicks, and intermittent breathing from me for 35 years, urged me to rethink doing something. I was also being ridiculed at work for sleeping on and off all day. Finally I made an appointment with a sleep specialist based on a very scientific fact, she was close to where I work! She ordered a night at a sleep clinic at a local hospital. This clinic had 4 rooms that were very nicely decorated and a fairly comfortible bed (by hospital standards). The staff could not have been nicer and with the exception of all the monitiors they had to attatch my stay was fine.
Originally, I was scheduled for a second night 2 weeks later but they had a cancellation and I spent a second night just 4 days after my first. They tried all different types of attatchments but settled on a full mask. Again I had a fairly comfortible night.
Several days later I obtained a RemStar from a company called HomeReach. I went to there offices and the experience there was very good. The rep showed me all the workings of the machine and was very patient and thorough in fitting me with the proper mask. Other that few "brain farts" on my part, I am now getting a good nights sleep. My wife, I believe, is even happier than me ---- she is not losing her hearing from my snoring, not getting kicked at night, and not feeling that I am going to die before the night is through because I quit breathing.
So far [url=viewtopic.php?t=1702]CPAP[/url] life for me has been very good
Originally, I was scheduled for a second night 2 weeks later but they had a cancellation and I spent a second night just 4 days after my first. They tried all different types of attatchments but settled on a full mask. Again I had a fairly comfortible night.
Several days later I obtained a RemStar from a company called HomeReach. I went to there offices and the experience there was very good. The rep showed me all the workings of the machine and was very patient and thorough in fitting me with the proper mask. Other that few "brain farts" on my part, I am now getting a good nights sleep. My wife, I believe, is even happier than me ---- she is not losing her hearing from my snoring, not getting kicked at night, and not feeling that I am going to die before the night is through because I quit breathing.
So far [url=viewtopic.php?t=1702]CPAP[/url] life for me has been very good
Gosh, such good experiences and such bad experiences.
Even though so far the median of your poll is at about somewhat worse than mediocre, the apparent range of responses I think reflects our individual perceptions based on our own experiences rather than on any broad idea of how good or bad the whole OSA medical field is. Again, most of us don't see the whole OSA medical world, just our piece of it. I have yet to hear someone say, "my neighbor knows all about sleep apnea and recommended to me a good doctor." But the good news is OSA is being taken a little more seriously in the medical profession, and is a little more known in the world.....but not nearly enough. I would imagine there's alot of pressure on doctors from insurance companies, pressure to prescribe the basics instead improved models which offer comfort and compliance. Pressure should be focused on the manufacturers to discontinue models which aren't as good as the improved ones, so insurance companies have no choice but to accept the better products. Only a thought.
Even though so far the median of your poll is at about somewhat worse than mediocre, the apparent range of responses I think reflects our individual perceptions based on our own experiences rather than on any broad idea of how good or bad the whole OSA medical field is. Again, most of us don't see the whole OSA medical world, just our piece of it. I have yet to hear someone say, "my neighbor knows all about sleep apnea and recommended to me a good doctor." But the good news is OSA is being taken a little more seriously in the medical profession, and is a little more known in the world.....but not nearly enough. I would imagine there's alot of pressure on doctors from insurance companies, pressure to prescribe the basics instead improved models which offer comfort and compliance. Pressure should be focused on the manufacturers to discontinue models which aren't as good as the improved ones, so insurance companies have no choice but to accept the better products. Only a thought.
No doubt you are right on that score, for sure.Mikesus wrote:Linda,
Unfortunately those inferior products are also the highest markup margin. Don't think that they will be doing it anytime soon...
I can dream, can't I?
What can be done?
Is there someone extremely famous who is on OSA treatment?
A famous spokesman?
......
Linda, .....who thinks we should get Liam compliant and famous enough to be on Letterman or something and have him get the word out about the crappy machines!!!.....just a fun daydream.....
Linda, .....whose peeps are getting nervous as we approach Easter, as they don't want their heads bitten off, or their bodies sucked into cpap hoses.