CPAP and the Medical Industrial Complex
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.
(This post was last modified: 10-10-2016 11:44 PM by asoundsleep.)