10-10-2016, 11:20 PM
(This post was last modified: 10-10-2016, 11:44 PM by asoundsleep.)
I have had great success with Auto-Cpap in that my current AHI is under 2.0 and usually under 1.0 with a pressure average of 12.3 (6-15 setting). However, little did I know that an Insurance driven process, medical liability concerns, doctor ignorance, and medical racketeering stood firmly in my way of finding a solution to my health concern.
My first sleep study was at home via my dentist because I was hoping to get an dental appliance. I paid her $250 out of pocket and was prepared to pay her about $3,000 for a dental appliance.
Based on the test, my condition was much too severe to get the dental appliance prescribed, although the dentist (and her lab) would craft a dental appliance for me were I to sign off on a liability waiver. The report said try CPAP therapy and if that failed see an ENT, and if that failed try the dental appliance. In the first test my AHI was well over 30.
Wanting to do the right thing for myself I called up my general practitioner and forwarded him the test results from the dentist and her lab. The GP did not put me on a solution path, instead he put me right square in the path of medical racketeering.
He could have sent me anywhere; to an ENT or a pulmonologist. I would have gone anywhere not to be falling asleep during the day, and gasping for air at night. At that time I was exiled to the couch by my wife, and I am sure over time I would die in my sleep.
I asked my GP for a CPAP prescription based on the at home test and he refused. My GP then insisted I get "titrated for a machine at his preferred sleep center." OK, no problem so I go to the sleep study, no big deal.
The sleep study was a total joke; but the technition was a nice guy who is beat down because he services many geographic locations (and many people each night) for what I would describe as a "sleep center mill." Like a puppy mill that pumps out puppies at any humanitarian cost, these guys pump out $4500-$5000 insurance claims to insurance companies, medicare, and medicare etc.
I also did not know at the time that the machines from Resmed and Phillips are so sophisticated that they can partially calibrate themselves to a large extent and in many cases. (I will talk about that later) I did not know that the sleep center uses software that interfaces with a souped up version of a CPAP (I call that device CPAP plus telemetry), and that said the software and the machines and technology are proprietary trade secrets of Phillips and Resmed (others). It is a black-box process type approach with the doctors and the lab technicians are following a flow chart based on trade secret software.
The pulmonologist behind the curtain of this sleep center is sort of similar to medical doctors who prescribe to a flow chart. There are a few doctors however at top hospitals (research scientists, who I have seen for serious issues in the big city) who know how things work, they are the guys who design the protocols others follow. I was a guinea pig in a study to help make prostate biopsies more accurate and less painful; I had double the biopsies to help a smart doc develop a new protocol. With CPAP we have major device manufacturers who are the only truly informed parties because the devices are sophisticated and proprietary
OK so I am waiting for follow through and literally suffocating at night. I am waiting a week, no result. Waiting two weeks, no follow through. Waiting three weeks no follow through. I did some research and figured out that the machines were very very sophisticated.
I took my dental test (asked the dentist for help, she has been in my corner for ten years) and based on a prescription from her lab bought a Resmed Auto CPAP machine for $900. I got the machine only to find that it presents with a drubbed down happy face menu. "The happy face approach assumes that you are an idiot, which may or may not be the case. I found the happy face to be a patronizing f... y.. from the manufacturer."
Reading the notes on this board I found that home-click opened up the programmable menu. It took me about two weeks to tune in the machine. My AHI has been going down ever since.
Thus Forty five days later, I called up the sleep center and asked them for an explanation as to why they did not follow up with me, they said follow up with your doctor. I asked the doctor the following question; "What if I died because you did not follow through on my lab test?" You know the meaningless sleep deprivation test, conducted by your business partners? My GP freaked out, he was not happy. I get a call from the lab, schedule another appointment and we will give you a nice small box, "your doctor prescribed a nice small box for you." I told the lab to shove the nice small box up their a.. . and I suggested to them I would talk to my insurance company.. (which I did not do because the insurance company is a scam in and of itself)
I sent a letter to my GP's practice (which is a huge consolidated partnership of doctors) and to his compliance officer. I then fired my GP for failing to follow though. Frankly, his practice (and this major chain of sleep centers) is a racketeering engine.
Here is the thing;
If the machines cost $1,000 to $2,000 and the technology is proprietary end to end, and if the machines are relatively sophisticated (they are smart and getting smarter every day), and you are relatively sophisticated; if there are few side effects from these machines; if you can have a $250 home test, why do you need this racketeering engine standing between you and a solution to your breathing problem?
Why can't you take a $250 home test and get a machine that programs itself?
I know "are you relatively sophisticated" is a big part of the question.
It took a great deal of trial to dial in my machine, to find the right mask, to find the hidden menu, to figure out a logical approach, to learn the software and then to ratchet up the settings to a sweet spot. It took two weeks and was costly and not so easy.
But that kind of jiggering also raises a second question; Will a single sleep center study be able to do anything more than dump a machine on you? I would say no. What do you think? If you need help then will one or two sleep center visits really be able to help you? Or is it a racket and I just had a bad experience?
I discussed my experience with another doctor of mine and I told him that I treated myself. He was astounded from two points of view;
He asked, "Isn't that kind of device and treatment insurance driven?" My answer to him was yes; but insurance is irrelevant if you have $2,000 to spend for your own benefit (machine masks supplies etc); it is allot cheaper than suffocating to death in your sleep. He agreed and then he admitted he treats himself out of his own field of expertise on occasion.
He asked, "How do you know you are on the right track?" I said I felt allot better; the best I ever felt. He agreed that represents a great metric to use. Feeling better is a great metric to use.
My thinking is that these machines would cost much less than half if sleep centers, doctors (ignorant or otherwise), and insurance companies were not in your pocket looking for a handout.
However, I know that many folks need the either the technical or financial help to get into a assisted breathing solution. For many these very expensive studies are not necessary. IMO For most, having access to these machines at a lower cost, and with a take home test, would be a better solution.
These machines operate on black-box trade secret algorithms; they will become sophisticated enough over time as to close many and most sleep centers which today are no more than racketeering engines.
Thanks to this board it allowed me to Help myself and be as self reliant as possible.
Why is being self reliant so hard these days? It used to be easy to be self reliant before cell phones and PC's!
I would be interested in your perceptions.
I found the system in Ontario Canada completely corrupt. Been doing my own treatment once I got a machine and sleepyhead.
My experience was quite different. I did a clinical sleep study for diagnosis in 2008, but then my GP prescribed an auto CPAP and self-titration. Like you I looked at forums and learned how to interpret the data (Encore at that time), and made the adjustments. I completely agree that the sleep business is a racket from end to end, from the sleep clinics to the DME suppliers. I have even seen considerable reports of intimidation from doctors and suppliers to discourage patients from making changes and controlling their therapy. We frequent hear of doctors that "don't trust or believe" the data produced by the machines, and would rather issue machines that don't give patients data. This of course results in more sleep studies to troubleshoot the inevitable problems.
Good read. Thanks.
10-11-2016, 09:07 AM
(This post was last modified: 10-11-2016, 09:14 AM by EnigmaGrey.)
The DME tech sounded rather defeated when she explained that my appointments would be free, assuming I bought their now-discounted unit: "But you're already adjusting it yourself . . . "
There's one main advantage though: if you're freaked out, they'll look at your results and tell you if you should be or not. They, along with your doctor, should know if there's a problem. For those that just want a plug-and-play experience and have the insurance to cover it, no doubt the DME is comforting and convenient.
If the machines didn't provide empirical data as to the effectiveness of your therapy (as I assume they didn't long ago), you'd be totally reliant on them or on how you feel, the later susceptible to the placebo effect and your own bias. Though it's nice to see CPAP seems to be a relatively harmless treatment even if improperly applied, the main risk being back-breathing C02.
If I had insurance, I wouldn't have even considered doing it on my own -- had they started my pressure at 6 or 7 and not 4, causing me to seek out help online.
I'd assume the "racketeering" aspect really is more-so resistance to change. They have a good thing when the process was more complex and they still want to keep their jobs, but independence of the patient threatens that. (Ignoring the possibility that your doctor may have been given a referral fee.) As apnea diagnosis and CPAP treatment continue to accelerate into the mainstream, they'll have to adapt.
10-11-2016, 04:36 PM
(This post was last modified: 10-11-2016, 04:41 PM by asoundsleep.)
Quote:I'd assume the "racketeering" aspect really is more-so resistance to change. They have a good thing when the process was more complex and they still want to keep their jobs, but independence of the patient threatens that. (Ignoring the possibility that your doctor may have been given a referral fee.) As apnea diagnosis and CPAP treatment continue to accelerate into the mainstream, they'll have to adapt.
I think you summed up what I was thinking in a much more clear and concise manner than I did, thanks!
I think it is resistance to change because there is so much money involved in vested and obsolete technology.
Having lived in Canada for five years, and now in the US. There is much more "medicine" available to you in Canada. Eg.; The pharmacist is an important front line medical care provider in Canada; here in the US they are an over-educated under-utilized and have been relegated to insurance processing and clerks (clerk-dumb sort of speak). Pharmacists are really smart, they all are, and they could provide some basic medical care at low cost. They are not allowed to in the US by law! In the US the idea of having more healthcare has been discarded in favor or institutionalized organized crime.
Canada is not a perfect system but it is much better than it is here in the US (unless you need access to the high points of medicine in Columbia Presbyterian or NYU-Cornell, or are de-prioritized by universal care.) However, I know very elderly Canadians who have no problems getting immediate access through the back door of hospital admissions.
Here in the US there is no healthcare for the majority of people, just a huge access charge of at least $10,000 even if you have a subsidized plan. My solution is to go around the crime here in the US.
To the point, There is no reason I see that these machines could not be sold without a prescription in most cases. Thereafter there is no reason why you could not have the metrics on your CPAP sent via the internal cell phone device to an expert for feedback and tuning. If you need an expert you can get an expert via telemetry.
Bottom line, this sleep center thing seems to be a huge racket in the US that is stopping people from getting something really valuable and essential to their well-being.
I am sure that some people need more intervention than I did, or they need some help, or it might be more efficient than the fish-flopping I had to do to figure things out on my own because I was functionally abandoned by a healthcare system in the US that has been replaced by fraud.
I might go back to Canada! But I lived in Quebec where the basics were cheap and the luxuries were expensive. I heard that the cost of living in Canada (especially the West Coast and Toronto) did a switch around where it is more like America, God help us all. Bon Courage!
WELCOME! to the forum.!
I'm sorry to hear that you have been through so much. However, it is great that you took charge of your own therapy and got it fine-tuned to treat your sleep apnea.
I wish you good luck on your CPAP journey, hang in there for more responses to your post.
Your rant is really too extensive for me to address every point (I don't blame you for being frustrated and angry!). While they did drop the ball, why did you wait 45 days to contact either the doc or the sleep center? As a patient, I would start calling within 10 days and call each and every day. In addition, why aren't you contacting the attorney general's office in your state to find out who to complain to so that change may occur? Bad docs and bad sleep centers continue until irritated patients complain about it. I'm not in any way saying anything here is your fault. But I would certainly put in a complaint.
I would also remind you that most people do not have access to the software of any of the top 3 manufacturers (or Sleepyhead) AND THEY DON'T CARE! Even many diabetics who have free meters and strips rarely test because of reasons I cannot fathom. It's for those of us who are motivated that want the access. I'm fortunate that the sleep doctor at my center is encouraging of my using Sleepyhead and simply gave me parameters. In addition, it seems from the comments in the last year, many sleep doctors haven't figured out how to properly use the data from the more advanced machines - they just check for compliance and ask how are you feeling?
Perhaps change is in the forefront. Now that Medicare has approved home sleep tests, I think the majority of sleep tests will be done in the home. Then we will go in the reverse. Those who NEED lab tests won't be able to get them - just given a machine.
There are both good things and bad things about medical care in both US and Canada. It's the fantasy pricing that I don't understand. What is the point of that when the only people they try to stick those prices to are cash pay?
10-12-2016, 05:54 PM
(This post was last modified: 10-12-2016, 06:01 PM by surferdude2.)
And... you can only wonder how accurately those machines report AHI events. My $3600 sleep study failed to qualify me for a cpap machine since it determined my AHI's were less than 5 per hour. I convinced my doctor to give me a script for an auto cpap machine and when I used it set at 12cm H2O, it reported an AHI rate of 22 OA's and 8 CA's per hour( AHI = 30). My AHI's are now less than 5/hr. and my pressure required usually auto rises up to 17 cm H2O.
A wise person would use an oximeter occasionally to see if things were going as well as reported by the cpap machine. Indeed, maybe use one to check and see if things are OK without a cpap machine. Trust but verify comes to mind.
I'm not saying you can't have sleep disturbances without O² reductions since that's all too common. Even so, an oximeter can give more insight into the problem and provide a valuable low cost way to get a second opinion on the efficacy of the therapy.