Respectfully, who runs this board?

[Mac33]

Aviator,
I'm with you on this...... CPAP is stone age but I use it for now. But this forum is not all CPAP because if you look at the top of the screen they do provide alternative links and info for other treatments so you can't say they they are at all skewed in one direction. I have started threads on alternate treatments the most promising being tongue stimulation device by ImThera now in clinical trials which the info coming directly from this site.

[cotech50]

I spent at least 6 months researching OSA and the treatments of it. I looked at the various surgical interventions and the percentages of success and the level of real help for OSA. My ENT did not recommend a surgery first he recommended a cpap because if tolerated provides a less invasive way of treating OSA. Surgeries are not without risk.

I was researching cpap equipment and stumbled on this forum. I am here because I have a cpap for my OSA and I am learning from others experiences, and perhaps I can help someone still seeking help with their OSA. There may be success stories from surgeries if anyone out there has any share because there are sufferers of OSA reading that are still seeking a treatment to their condition. I know my ENT never got a benefit ordering me a cpap as he does surgeries but did not recoomend one in my case.

MY THOUGHTS

[Hawthorne]

When I was diagnosed (7 + years ago), my Sleep Specialist told me all the options for treatment -surgery, dental appliance, or cpap.

I chose cpap myself.

I found this forum a few years go and began to educate myself about using cpap successfully. After all it is entitled "cpaptalk.com" so it is about cpap.

[Cygnusia]

When they finally approve that "breathing pacemaker" I'll seriously consider surgery as a viable alternative to CPAP. I've read nothing (plenty of source material out there in the interwebs, not just here) that calls for a 100% success rate for surgical solutions. It just doesn't really completely fix it in many cases. Surgery+CPAP or just CPAP? I'll take the CPAP, thank you very much.

Do I LIKE wearing the mask every night? HELL no! But I wake up every morning, and that's all that matters to me right now.

[deadhead77]

I have read many, many posts on this board...And I have come to a conclusion....

My opinion, after long and careful study of the posts, is that this board is bought and paid for by the CPAP manufacturers/distributors...

Here is why I say that.... There is a complete lack of acknowledgement that ANYONE benefits from ANY treatment other than CPAP...The consensus is that NOTHING WORKs (i.e. surgery...) execept CPAP...( and a FEW posts that barely admit that...well, yes, dental devices have some slight promise.....

Truthfully, I refuse to believe that the Pillar Procedure, LAUP, UPX3, et al....are complete failures and frauds...YET there are NO success stories on this board that I can detect AT ALL....

Since surgery is a direct competitor to the very lucrative CPAP industry....and best of all, it's (CPAP) another one of those treatment for life deals...The complete lack of published success stories makes perfect sense....

However, that turns this from an information board to one of at best pure advertisement...and at worst, propaganda...

Therefore, I have GREAT skepticism of the overall validity on the claims made here....

I agree that CPAP is considered the GOLD STANDARD of treatment for sleep apnea....But to pretend it is the ONLY way to go...that is misleading at best...

Industry paid posters....feel free to flame away....

Do you not know that the whole web was designed to create a master data source for the treatment of conspiracy theory syndrome

[GaryG]

Aviator, some of us may be dumb, but we're not stupid. If there were a treatment for OSA that was far better than CPAP, we'd all be talking about it here.

[roster]

Do you not know that the whole web was designed to create a master data source for the treatment of conspiracy theory syndrome

Good one deadhead!

I have heard many time about great conspiracies. Lordy, lordy, now I discover I am part of one!

Do we have a bumper sticker?

[mars]

The people who come to this site are seeking info because they or a loved one has a diagnosis of OSA/Snoring...

.

Hi aviator202

First of all, the above statement is not true. Most people who participate in this site do so because they are going to use, or want to use, or are using a cpap machine. From your own statements there are obviously plenty of people with OSA who get fixed up by surgery, and there is no reason for them to come here.

Secondly. even given the above there are many posts and discussions on surgery, dental appliances, bananas etc. Some for and some against. So it is obvious that you really have not read all that much, or searched intelligently.

Thirdly, you would not go to a cricket forum, and expect them to be talking about football. They would mainly talk about cricket, even though there are many other sports around. This is cpaptalk, not OSA or snoring talk.

Fourthly. I think your arguement is just for the sake of arguement. Maybe you having nothing else to do, I do not know. But your statements about this forum are spurious, and simply untrue.

quote

Since surgery is a direct competitor to the very lucrative CPAP industry....and best of all, it's (CPAP) another one of those treatment for life deals...The complete lack of published success stories makes perfect sense....

end quote

Well, there you prove yourself to be a spoiler, who only agenda is to cause trouble. If you cannot find success stories on this Forum you are not looking. And please do tell why surgery is "best of all".

Finally. if this board was monitored, do you think your posts would last five minutes?

So do please give us your facts and figures about successful surgery. I am sure many of us will be interested. But save the bullshit for your next Forum. We already have many experts at that, and all far more plausable than you.

Unlike DSM, I am not a gentleman.

But welcome anyway.

cheers

Mars

[nobody]

I bet almost NOBODY wears a CPAP mask/machine for grins and giggles...

Nope. I wear it because I sleep better!!

Seriously, though, I'm not sure where you get the idea that this industry is extremely lucrative. The machines are expensive up front, but they have a several-year useful life. It doesn't work out to being all that much per year. Some of the masks can be a bit expensive to maintain, but nothing that's going to make anyone rich given the number of masks available from different manufacturers. No, where the huge amounts of money are being made in this business is with the sleep labs and sleep doctors. Mine charged $2600 for one night sleep study, and there are 8 rooms, all full pretty much every night, it doesn't take a genius to see where the money is being made! And that's just for the lab. The doctor charged over $400 just to read the sleep study! Plus the office call and follow up. You're right, big money is being made, but it's not on CPAP equipment.

[nobody]

Aviator, some of us may be dumb, but we're not stupid. If there were a treatment for OSA that was far better than CPAP, we'd all be talking about it here.

I dunno, I think it's kind of nice to breath filtered humidified air all night. I do wonder when I'll be getting my check from Respironics and the like, you know for being an industry paid plant

[Sleepy Taz]

In answer to you question, this board is run by forum members and moderated by the host Cpap.com. They provide this resource for people to support each other in their cpap therapy and have many times themselves posted articles about surgery and oral appliances. I had the surgery 19 years ago in the hopes of dropping cpap but all the surgery did for me was to cure me of my yearly bout with sinus infections. I also know personally at least 10 other people who have had the surgery and all of them still need their cpap so please tell me why 100% of those I know were not cured, and why this is a better option than cpap. In truth only about 20% of those that have the surgery are successful in curing OSA, but only about 10% of OSA sufferers try the surgery. That means that 2% of OSA patients are cured by surgery and the other 98% either use a cpap or are noncompliant. I firmly believe that the noncompliant percentage would drop dramatically with proper education and support from healthcare professionals but they are too busy to actually spend time helping their patients adjust. If you feel that strong about these forms for treating OSA, post facts to support your claims that surgery and oral appliances should be the 1st option not Cpap. Without those facts your attacks on one of the best resources available for OSA sufferers is unfounded and unnecessary!

[Julie]

Aviator - He's a recent thread for you.... viewtopic/t47234/The-End-of-CPAP.html

[jnk]

My primary doc is a surgery advocate. My sleep doc is a CPAP advocate. So I had to do my own research to discover which option was best in my case. The research I did indicated that surgical options were mostly for people who could not tolerate the best option--PAP therapy.

Is that my opinion alone? No. I believe it is the opinion of the majority of unbiased sleep apnea surgeons as well.

For example, note the statements of one highly respected sleep apnea surgeon, Dr. Steven Y. Park:

As a sleep apnea surgeon, I agree with Mike on this issue for you. If your AHI is down to 3-4, why do anything else such as surgery or oral appliances that won't come close? Of course if you want a complete surgical cure, you can opt for a tracheotomy. MMA surgery has a higher success rate, but it's a relatively big surgery.

Your surgeon is right in that thin people who have mainly structural jaw issues do better with sleep apnea surgery, but in general, your recommended choice of procedures gives you no better than a 40% chance of "surgical" success. Without looking at you it's hard to say, but if you have very large tonsils and you can see the entire height of your tonsils and the back of your throat, then it can be up to 80% (using the Friedman criteria).

My philosophy with surgery is not to do surgery just to see if it works. You have to know exactly where the obstructions are happening. In most cases the tongue is almost always involved. This is why the UPPP procedure has only a 40% chance of success. If you add a definitive tongue base procedure (based on Stanford's data and many others and even my own), success rates can be up to 80%.

Obviously there's a lot of controversy over the definition of success and how to reconcile any significant residual apneas and hypopneas. In certain patients that have tried everything and are at wit's end, surgery may be a better option than in your case. I've seen many people who have struggled for months or years, trying everything possible, and not able to benefit from or use their CPAP or dental devices. These are the people that are in tears. For these people going from 58 to 12 is much better than not being able to treat it at all and staying at 58. Quality of life is also a big consideration. Yes, there will always be people who don't respond to surgery, just like there will always be certain people who don't respond to or can tolerate CPAP or oral appliances.

One thing I've noticed with all the various sleep apnea forums that I've visited is that rarely do any of the surgical patients that are happy with their results ever participate in these type of discussions. I guess they don't need to. The ones I see are mainly the ones who underwent UPPP surgery only and are either frustrated, angry or confused about their experiences or options.

My approach is to help patients maximize their use of CPAPs or oral appliances first. Frequently, opening up the nose medically or surgically can help people tolerate these options better. I'm pretty liberal about this. I also spend a great deal of time counseling patients about their CPAP issues and dealing with the DME vendors.

I've heard about patients not being able to use CPAP after surgery, but I've never seen it. Physiologically and anatomically, it doesn't make sense. I don't recall any studies showing this, either. If there's anyone on this forum that had this experience, please let me know.

I'm extremely selective in offering surgical options, but only after exhausting all other options. When I do go to surgery, I usually address the tongue along with the soft palate, and sometime only the tongue. The few times I do a UPPP alone is when the patient is reluctant to undergo a tongue procedure and wants to do it in stages. Typically, they'll go on to need the tongue taken care of later. The only reason I continue to perform these procedures is because of the results. It's truly gratifying to see patients' lives that are changed radically for the better. No matter which option you choose, there will always be significant failures. There's a lot more we can do to help patients use CPAP more effectively, but in the real world, the overall long-term compliance rates and effectiveness is very low, probably way under 50%.

Until we have a more definitive approach to "curing" sleep apnea, we need to have all the options open, since some patients will respond better to some options over others. Sorry, Mike, but I'm not as optimistic as you regarding a future cure. There's been a lot of fine tuning of our current options, but nothing has changed significantly over the past 20 years. I don't see any future with the pharmacological approaches that are coming out, either.

The bigger issue is that not nearly enough education, support and counseling is being done for CPAP, oral appliances are being over-marketed, and surgical procedures are being performed in the wrong areas for the wrong reasons.

-- http://www.sleepguide.com/forum/topics/ ... 1#comments

Now, if your argument is with the sleep apnea surgeons themselves, I would suggest you are fussing at the wrong people by posting what you posted here.

Sometimes a hard-to-accept truth can look a lot like a conspiracy when one does not want to be convinced by the facts.

Welcome to the board. We enjoy open respectful discussions on all sleep-apnea-related topics.

jeff

[GumbyCT]

Unfortunately, it is way TOO one sided to make me believe that the CPAP industry is NOT influencing this site....

Objectivity??....Definitely lacking here.....

I'm tired of reading - what is it that YOU have to offer, my friend?

[tonycog]

Wow! All this time, I thought I was being helped and encouraged. Now I discover the truth. I need to start over - go back to my first tortured days on Bi-PAP - when I could not sleep, could not get a mask to fit, could not function. I thought things were going much better, but now I realize that they really are not going better after all. I've been duped into buying equipment. Except that I already had the equipment, as instructed by my doctor. I just needed guidance in using it.

Can someone tell me what surgical procedure will cure Cheyne-Stokes respirations I'd pay serious money for a guaranteed positive outcome that would allow me to throw my Bi-PAP in the trash can. Come on! Quit hiding it. Maybe aviator202 knows. Tell me....what procedure will cure this disorder and we can both stick it to the CPAP industry.



Or maybe aviator202 should just go watch X-Files. Or stop watching it.
Tony