Frankly, this is an example of everything that's wrong with healthcare in the US and much of the developed world.<p>The textbook OSA patient is a middle-aged man with a short, thick neck. OP is a middle-aged man with a short, thick neck. I'll bet dollars to doughnuts that OP is also hypertensive. In such a presentation, there is a very simple initial prescription - lose weight, drink less alcohol, quit smoking, get some exercise, see me in six months. In nearly all cases these simple lifestyle changes cure the OSA, yield a huge array of other health benefits and cost nothing. CPAP is only indicated if either the patient still has symptoms after reducing their neck circumference, or is somehow unable to lose weight.<p>The only thing that went wrong in OP's case is that his primary physician yielded to demand for a quick fix, rather than making the correct prescribing decision. OP would rather sleep on a respirator than improve his lifestyle. I'm not blaming him, it's a cultural problem, but it's one that will kill us all and lumber us with an impossible burden of healthcare costs.<p>Consider this: The leading cause of limb loss in the developed world is type 2 diabetes. Mull that thought over for a moment, let it percolate. Most cases of type 2 diabetes are preventable through simple lifestyle changes. Most cases of dysvascular amputation can be prevented by better management of blood glucose levels. People are having their feet cut off because they are unable to appropriately manage their most basic physical needs. That thought is what disturbs my sleep.
The system does sound incredibly frustrating. It definitely needs some fixing.<p>But some of what the author mentions are sensible and reasonable restrictions.<p>> <i>I can't breathe at night -- it's not being fat, although I am, it's that for some reason the muscle tone in my neck sucks.</i><p>How does he know? Losing weight is effective for many people with OSA.<p>NICE[2] have guidance for OSA and CPAP which specifically mentions obesity and the need for lifestyle changes before CPAP is used.<p>(<a href="http://publications.nice.org.uk/continuous-positive-airway-pressure-for-the-treatment-of-obstructive-sleep-apnoeahypopnoea-ta139" rel="nofollow">http://publications.nice.org.uk/continuous-positive-airway-p...</a>)<p>> <i>You'd think sticking a mask on your face would be fairly simple to learn</i><p>The mask has to push air down an obstructed airway. Obviously it has to fit correctly. As for masks being easy to fit - see almost any facemask and check for the nose strips.[1]<p>> <i>So I went to the doc and told him my problem. Told him I needed a CPAP</i><p>Imagine you're a doctor. You pay millions for liability insurance. Some guy turns up and self diagnoses his illness. Do you accept that diagnosis? Or do you follow recommended procedure for that illness? (I accept that the recommended procedure is broken because of insurance).<p>> <i>My wife and I have been observing the symptoms for years, we're done the research, and now it is time for action.</i><p>See, for example, Morgellons or Chronic Fatigue or Myalgic Encephalitis or MMR vaccinations where people have spent years doing the research and have arrived at very wrong conclusions and want useless, or harmful, medical interventions.<p>[1] correct: (<a href="http://www.molnlycke.com/us/Surgical-Products/Product-Selector---Surgical-Division/Tabs/Products/Face-Mask---Extra-Comfort/?activeTab=1" rel="nofollow">http://www.molnlycke.com/us/Surgical-Products/Product-Select...</a>) {stupid image, sorry)<p>incorrect: (<a href="http://www.sciencephoto.com/media/101522/enlarge" rel="nofollow">http://www.sciencephoto.com/media/101522/enlarge</a>)<p>[2] NICE is the organisation in the UK that assesses cost effectiveness of treatment options. It's important not to waste money on ineffective treatments; it's important to use a cheap treatment if it's as effective as an expensive treatment.
These guys can help: <a href="http://www.apneaboard.com/" rel="nofollow">http://www.apneaboard.com/</a><p>They have info on adjusting lots of models of machine. And there is nothing actually illegal about doing so for yourself.<p>You don't really need a sleep study with an APAP machine since it does it automatically. So what you do is find a friendly doctor to write a prescription, then go to <a href="http://cpap.com/" rel="nofollow">http://cpap.com/</a> and buy your own machine.<p>Legally any doctor can do this, you don't need a specialist. Some are willing to prescribe based on symptoms without needed a sleep study.<p>And by buying the machine yourself you can research it to pick the best one instead of what the medical supply house picks for you.<p>These laws are incredibly annoying, but there are ways around it - while staying legal!<p>I remember once seeing a bottle of sterile water (for a humidifier) that said "By prescription only. Only for use by, or under the advice of, a Doctor."<p>Apparently by writing that they can charge more money for it, and insurance will pay for it. But if it's over the counter (remember we are talking about water here) insurance won't pay.
Suppose you have a system, but for legal liability reasons you cannot have this system be open to users (say it's a medical system, and having untrained people fuck around with it messes with certification.) However, you make it reasonably easy for users to override any interlocks (i.e. put in no protection).<p>A user finds out about the override, hacks their device, misprograms it, and dies.<p>Is the company that manufactured this device legally liable for this death? If they <i>knew</i> that it was easy to override the safety interlocks, are they then liable? How about if there was demonstrable evidence that the knew about the <i>specific</i> override? What if they, in an informal capacity, spread information about how to do the override?<p>Here is a parallel situation: same company makes a device, and has locked it down so hard that it's not possible to actually get anything done with it. Nurses and other trained practitioners know that "the usual way of business" is to override some of the safeguards, because, of course, that's the only one anyone ever gets any work done. However, the company disclaims all legal liability in the case that someone does such a modification. Are they allowed to disclaim that?<p>It's complicated.
A lot of his complaints remind me of a situation I'm sure everyone here is familiar with:<p>Client / Non-technical Manager: I looked it up on the interwebs and we should use [MongoDB / Node.js / Java / C++ ...] for [Completely inappropriate problem space].<p>You: But that technology doesn't fit our problem space and / or we have no domain knowledge of that technology.<p>Client: The interwebs said it was the fastest hipster technology around it would be stupid not to use it. You just want to charge your extortionate rates analyzing the problem just to come to the same conclusion.<p>You: ....What?!<p>I'm not saying there isn't anything wrong with the medical profession, and the US seem to have fostered a special brand of messed up in there healthcare system but suggesting that the doctor should just agree with the patients own diagnosis, or worse the the patient should just self medicate, seems like a crazy thing to advocate.
Very simply, the medical system can extract as much money from the patient as they want. The worse the illness, the more the patient will pay. Because the alternative is death. Health care is not a matter of supply and demand, it is a matter of life and death. Patients will give you the shirt off their back to avoid death. It's just not fair.<p>That is why strong government regulation for health care is a good idea.<p>These things run far more smoothly in countries with a public health care system. There, doctors typically get a fixed amount of money for each kind of illness. Hence, their incentive is to diagnose an illness as swiftly as possible and get the patients out the door. This has its own set of downsides, but at least the patient gets help rather more quickly and with less hassle.
My experience wasn't nearly as bad as the OP's - one at-home sleep study, a tester CPAP machine for a week, and a prescription to get my own CPAP soon after. (My health provider/insurer was Kaiser, which is more integrated, so perhaps they have less incentive to milk it.)<p>It was, however, strange to need a prescription to buy a machine. The prescription includes the settings, so when it arrives, it's already tailored to your needs.<p>Even so, the machines I was given were relatively easy to understand -- I even fiddled with the settings a bit and found what was more comfortable. The machine I bought for myself is a DeVibliss, and part of its appeal is that comes with software to read its data. It is proprietary and Windows only, but likely hackable since we have readouts of what the data means. I haven't gotten around to figuring that out.<p>Medical techs take a really dim view of patients fiddling with settings. I know they did when I asked them all kinds of questions. Their assumption, which is probably verified for them daily, is that patients have no idea what they're doing, and conceding authority is to invite disaster. Hackers may trust themselves to figure something out, but let's be serious -- we can be aggressive because it's just data. We forget all the times we hose the filesystem, corrupt the database, have catastrophic memory leaks, and so on. Medicine is not as forgiving as computing.<p>Still, with CPAP, it's probably very difficult to cause yourself injury. Maybe a more open policy would be appropriate.
The most valuable hack I've discovered and used when dealing with the health system (and bear in mind this is in the UK, where the main problem is not cost, but time) is to be great friends with a GP. I always discuss health issues with him <i>before</i> going to the doc, so there are no surprises afterwards, and I know exactly what to say to expedite the process.<p>It turns out that there are various magic phrases you can use to speed up the outcome, guarantee a referral, etc. If you're friends with a doctor, they'll tell you those phrases.<p>It probably won't help with all the waste in the process, though. And it definitely won't help with closed hardware.
I tried to schedule a sleep study, was told it would be a month, tried to price a sleep study somewhere else, was told it would be over $2000...<p>...gave up and bought an automatic CPAP machine off Craigslist for $650 from someone who knew how to access doctor mode (hold down button X for 10 seconds after turning the power on), set it to adjust automatically...<p>...and stopped after a month because the mask was preventing me from sleeping well, but at least I didn't spend more than $650.
"If this situation existed anywhere else where we paid tens of thousands of dollars, people would be outraged."<p>oh you mean like your iphone? or how about your android? or the software that runs your television? or how about your car?<p>you're locked out of software products <i>all</i> <i>the</i> <i>time</i> and (almost) no one is outraged. the people who care diligently go to work to jailbreak the device and everyone else enjoys something that "just works"...
I think this is a perfect opportunity for businesses from other countries to step in. Say, some company in a less regulated country starts selling ones. Would it be actually cheaper to hop on a plain and get yourself one, instead of taking a couple of $2000 sleep studies? I bet it would.<p>To generalize, basically any kind of business could profit from less regulation. You just have to find the market big and desperate enough to travel far for that.
Definitely sounds like a bit of a racket. There doesn't seem to be any reason to need all these studies to get diagnosed here.<p>However, if you go too far the other way, you end up with Kevin Trudeau and other scam artists selling you snake oil to cure whatever ails you. There are reasons why people can't just say anything will cure any medical ailment.
Here's a start:<p><a href="http://www.kickstarter.com/projects/1342192419/pulse-sensor-an-open-source-heart-rate-sensor-that" rel="nofollow">http://www.kickstarter.com/projects/1342192419/pulse-sensor-...</a><p>CPAPs aren't exactly super hi-tech either, and since they are fairly noninvasive as medical tech goes I can easily imagine some people experimenting with homebrews...
For everyone hyper-focused on him being overweight- that sometimes isn't the only problem (or the problem at all).<p>I'm relatively thin/average build, and was having troubles sleeping, breathing and I was snoring a ton. I complained to my GP about this, and he prescribed some nasal spray which didn't help at all. Went to an ENT and of course had to have a sleep study.<p>The entire time I was telling them, I think my tonsils are fucking huge and I have sleep apnea due to it. Only after seeing two doctors and having an $800 sleep study did they agree and I was able to get my tonsils removed. Afterward they wanted to do another sleep study to find if it fixed it; I said no thanks.<p>Sometimes- just sometimes the patient actually knows what they need. Now I have a new GP, who is much more helpful in providing what I actually need without random expensive tests.
Of course, doctors should just give the patient whatever he asks for. What does all those years of medical school matter, this guys runs a blog and he has done research before going to the doctor!
I wrote a small program named Oximon a few months ago to extract data from CMS-50x pulse oximeters and generate Gnuplot graphs. I use it to detect REM sleep and it does the job with a nice accuracy so maybe it could help someone suffering from sleep apnea as well: <a href="https://github.com/vinc/oximon" rel="nofollow">https://github.com/vinc/oximon</a>
While this sort of policy has its place, like for stopping people overriding their morphine machine to skip its limit, I honestly don't see the problem for things like this, primarily diagnostic based equipment.<p>I wonder if there might be a market for open source medical hardware with open source software to go with it. This could provide people with a very inexpensive option to look after themselves and also by perhaps uploading their data anonymously to an open database, help others too in diagnosing their problems too.<p>Obviously you when you get into things like this people get a bit scared because the medical industry is proprietary by nature which makes it scary because you don't want to mess with something you are told to go to a professional about, I think ubiuiquity might solve the problem. The more information out there, the more people are educated and the less scared they are.
I think open source medical hardware is an industry ripe for exploding, which is helped by 3D printers becoming more common and affordable. Need a new prosthetic leg? Let's print you a specifically custom fit one for next to nothing compared with getting one made the traditional way.
This site smells like a SEO scam. Look in the "related sites" sidebar: lots of links to common search keywords like "treating neuropathy in feet" and "facebook login help", in a small, light gray text.
Would it be possible to reverse-engineer such a device?<p>I have been messing with some stepper motor drivers, that had at least a few pages of spanish or incorrect documentation, or a very simple circuit, however, I wonder what you do when there is no documentation. How do you learn reverse-engeneering?
The "True Hacker™" way: step1, reverse engineer the pulse ox usb protocol, step2, build a DIY CPAP machine, step3, release everything as open source/open schematics.
This isn't about FDA regulations[1] or tort law[2]. It's about the American medical system being a corrupt racket.<p>1. The FDA will approve nearly anything. For example, very flexible user-managed insulin pumps.<p>2. A jury of retards will convict if the plaintiff is sufficiently pathetic. Assuming you have reasonably good intentions and reasonably clear documentation, tort liability is just a roll of the dice.