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But it also usually takes a month or two of sleeping with the mask all night long before most people notice a real improvement in how they feel in terms of daytime functioning. In other words, for most people, the improvement in terms of how they feel during the daytime is a gradual process that happens over the first couple of months of therapy.

I guess that makes it seem really odd to me.

For instance, let's say you had a very bad headache 24x7, bad enough to seriously affect everything you do. The doctor prescribes a pill to get rid of your headache but tells you it will most likely make your pain much worse and will probably take several months before you get any relief - who is going to take it? What kind of treatment option is that?

Why isn't surgery offered to everyone with OSA? It sounds like that would work a lot sooner than a lot of people get CPAP to work.

First - it is NOT true that things have to be worse before getting better - is that what you read into RS's note?

Many of us just got onto our machines, went through a few masks to find the right one, and have more or less been fine (and better!) ever since. Of course there will always be odd glitches here and there and sometimes it takes a while to fix them, but in general the majority of us are so glad we found Cpap and have made a point to working things out.

And why you assume 'months' is beyond me.

But lots out there have had surgery trying to get a one shot fix, and for a few months some think they've done it... but most of the time, within the year, they're back on 'the hose' needing it just as much, only with their anatomy forever messed up and not very helpful in starting Cpap again.

But you have such a huge attitude problem I don't know if anything we say or try to help with will work... so sad.

TooNew wrote:

But it also usually takes a month or two of sleeping with the mask all night long before most people notice a real improvement in how they feel in terms of daytime functioning. In other words, for most people, the improvement in terms of how they feel during the daytime is a gradual process that happens over the first couple of months of therapy.

I guess that makes it seem really odd to me.

Your body needs time to heal. Sleep is what it needs to heal. With untreated OSA your body does not get the quality sleep it needs to heal the daily wear and tear because the sleep is bad. And the longer the OSA is untreated, the more the unhealed daily wear and tear builds up. You notice it in the way you feel, but the lack of sleep caused by OSA does more than just make you sleepy during the daytime; it actually harms your body.

Once you start sleeping well with the machine, your body starts to heal. For a lucky few, they wake up the first morning feeling reborn. For most of us, it's a process: We feel a bit better day after day. And it's not like most people are totally miserable for the first two months or so of PAPing. Rather, they just gradually start to feel less tired and less sleepy during the daytime. And by the end of the first month or two, most PAPers start to realize that they really are feeling better than they did before starting their CPAP adventure.

For instance, let's say you had a very bad headache 24x7, bad enough to seriously affect everything you do. The doctor prescribes a pill to get rid of your headache but tells you it will most likely make your pain much worse and will probably take several months before you get any relief - who is going to take it? What kind of treatment option is that?

I have severe, chronic migraines and that's actually a pretty accurate description of what happens when have them: They affect everything you do and you've typically got a headache almost every single fucking day of your life. And while a doctor can prescribe a "rescue med" might end the pain for a particular headache in a few minutes, you can only take those rescue meds 1-2 times a WEEK, or they will trigger rebound headaches.

So when you are unlucky enough to have migraines on a chronic, daily basis, headache doctors usually recommend a two-pronged approach: They prescribe a rescue med (mine is something called Maxalt) for you to take at the beginning of a really nasty migraine---it won't help if you don't take it right at the very start of the headache. And they specifically tell you, "You can only take this ONCE a week, so pick the headache you take it for carefully."

And at the same time they prescribe a maintenance prophylactic medication designed to prevent as many migraines as possible. The only thing is, it takes time for the prophylactic migraine medication to work. You are told several things about prophylactic migraine medication when it is first prescribed:

• It will take anywhere from 2 to 6 weeks before the daily, chronic headaches start to lessen both in frequency and intensity. So be patient.
• The prophylactic medication will have to be ramped up, sometimes over a week or two, and until you are on the therapeutic dosage, don't expect anything to change.
• The prophylactic medication will not prevent all of your migraine headaches; the idea is to reduce the number of them so that you are not in pain every day and so that you can function most days. The rescue medication should help deal with the migraines that happen even though you are taking prophylactic medication every single day.
• The prophylactic medication may not work very well for you anyway. If you are still having significant numbers of migraines after 6 weeks, we may need to either up the dose (if there's been a drop in your migraines) OR switch you to a different medication altogether and start over.
• The prophylactic mediation may have side effects that you cannot tolerate. If that happens, we'll have to switch you to a different medication.
• The prophylactic medication may work well for 6 months to a year (or more) and then become less effective. You'll know if the medication becomes less effective if the number of your headaches starts to increase.

I've been treated for chronic migraines for almost as long as I've been PAPing. During the first six months of fighting my War on Migraines, I washed out on three different prophylactics, did exceptionally well on something called Deplin for several years, but had to increase the dose of the Deplin and add a second prophylactic medication (verapamil) this past spring because the headaches had started to come back with enough frequency that the Maxalt could not be used to control the ones that needed pain medication.

Here's the thing that you don't seem to understand: Chronic medical conditions, and OSA is a chronic medical condition, are not things that are solved by a magic treatment where you do something and then quickly get almost instantly. It usually takes some time to get better once you start therapy.

Why isn't surgery offered to everyone with OSA? It sounds like that would work a lot sooner than a lot of people get CPAP to work.

The most common OSA surgery is called UPPP. It typically costs somewhere between $2000 and $10,000 (as compared to the $500-$1000 cost of a CPAP/APAP). Moreover, UPPP surgery an invasive, very painful surgery and it can have some serious complications. It usually requires an overnight stay in the hospital, taking at least 1 week off work, and up to 6 weeks for full healing. And most importantly, UPPP surgery has a fairly high failure rate, particularly in the long run. In other words, a large number of UPPP patients' AHI is not sufficiently reduced by the surgery in the first place, or over time the apnea comes back and is frequently worse than it was before UPPP surgery. How much time? It may be 1 year. Or 5. Or 10. It all depends. However, for UPPP patients whose AHI is not sufficiently reduced by the surgery OR whose apnea comes back, the only real option is to then do CPAP. Unfortunately, UPPP surgery can make CPAP adjustment more difficult because it can be much harder to keep the air from the CPAP from entering the oral cavity. In other words, UPPP is not reversible, so it if doesn't work, or if you have complications, or if the apnea comes back years later, you can be worse off than if you never had the surgery in the first place.

CPAP, on the other hand, is a bit of pressurized room air blown down your airway when you are asleep. Yes, it requires a machine and a mask. And it has an undeserved bad reputation. Moreover, it's totally reversible: Meaning if you try CPAP and you decide that it really is not for you because you are unwilling to do the work to make this crazy therapy work, you can return the machine to the durable medical equipment provider, often with only a minor loss of money since CPAP machines are usually sold with a "rent-to-own" contract that lasts several months.

Finally it's also important to understand that the definition of "successful UPPP surgery" and "successful CPAP therapy" use very different standards: For CPAP therapy to be considered "successful", the treated AHI needs to be less than 5.0 (i.e. in the normal range) night after night. And almost everybody who is willing to work a bit at making CPAP work can get their treated AHI to under 5.0 every night. Many people here have treated AHIs that are less than 2.0 or even 1.0 almost every single night.

But most surgeons define "successful UPPP surgery" as a surgery that reduces the patient's AHI by 50% roughly six months after surgery. In other words, a person with severe untreated OSA (untreated AHI > 30) could have "successful UPPP surgery" and still have a post-op AHI in the moderate OSA range.

Julie wrote:First - it is NOT true that things have to be worse before getting better - is that what you read into RS's note?

Many of us just got onto our machines, went through a few masks to find the right one, and have more or less been fine (and better!) ever since. Of course there will always be odd glitches here and there and sometimes it takes a while to fix them, but in general the majority of us are so glad we found Cpap and have made a point to working things out.

And why you assume 'months' is beyond me.

Because from the reading I've been doing, MANY people take months to either get used to it, to get relief, or just to get it configured properly.

But lots out there have had surgery trying to get a one shot fix, and for a few months some think they've done it... but most of the time, within the year, they're back on 'the hose' needing it just as much, only with their anatomy forever messed up and not very helpful in starting Cpap again.

But you have such a huge attitude problem I don't know if anything we say or try to help with will work... so sad.

There is a lower jaw surgery that has nearly a 90% long term success rate.

As for my "huge attitude problem", I'm not sure where you get that. Yes, I am very pissed off about having the THIRD medical issue whose primary cause is being overweight - when I have never been overweight, but I'm not feeling any particular bad attitude about any individual issue - it's the combination, the 3 strikes, when I wasn't even at bat.

The most common OSA surgery is called UPPP. It typically costs somewhere between $2000 and $10,000 (as compared to the $500-$1000 cost of a CPAP/APAP).

I'm aware that UPPP has a low success rate - I was thinking of the lower jaw surgery - something advancement.

In either case, cost is not an issue as I have coverage for either way it goes. I do think you're underestimating the costs for CPAP though...

As for CPAP vs surgery, shouldn't treatment for chronic conditions be presented to the patient? ALL treatment options? Shouldn't the patient be able to choose what they feel is best?

One of my other issues (primary risk being overweight - which I have never been) was presented the same way. HERE is your solution. Doesn't matter how many other solutions there are (surgery was one), WE will decide what you need. Gives me a feeling like if I needed a car, and the salesman didn't listen to anything other than "car" and sold me the one he thought I should have.

At least I have 3 more nights to try an sleep before the titration study.....

You can ask to be evaluated for the mandibular surgery....that's why we ask for second opinions. It's a complicated surgery.
The only part of a UPPP surgery I might consider would be removal of the tonsils IF (big IF) they were chronically enlarged.

Mandibular surgery is a viable option for some people with OSA due to facial structure and compromised airway. It isn't for everyone though.
I got OSA courtesy of menopause...not only do the boobs, belly and butt go south and start sagging so do the airway tissues. Mandibular surgery wouldn't have helped me because my airway is nice and normal size and my jaw and facial structure is nice and normal...and BTW I also was a skinny ass little thing when all this happened. Not so skinny now but that's due to other issues but when I first was diagnosed...weight had nothing to do with OSA. Lots of skinny people have OSA. Unfortunately we have to deal with a lot of old misinformation and stereotyping when it comes to OSA.

You came to a cpap help forum...what we do is help people who want to make CPAP work for them...that's what we do here.
This isn't a "I hate cpap forum". If you don't want to go the cpap route then don't go. No one can force you to do anything you don't want to do.
If you want to try cpap...we are here to help but if you won't try it and wish to try something else then by all means try something else. Just don't expect us to hop right on that bandwagon with you.

This isn't a "I hate cpap forum". If you don't want to go the cpap route then don't go. No one can force you to do anything you don't want to do.
If you want to try cpap...we are here to help but if you won't try it and wish to try something else then by all means try something else. Just don't expect us to hop right on that bandwagon with you.

Well, no, they can't force me to do anything, but they can present only one option - take it or leave it (and that's usually the cheapest option - for them).

My wife wants me to do CPAP - she's tired of me being tired and grumpy. I'm tired of me being tired and grumpy. I am just someone who does not have patience. I want to see results and I want to see them now. And I want them without side effects.

Ahh....we all "want" a lot of things but sometimes (actually probably most of the time) we don't always get what we want.

You sound like my husband...zero patience but fix it now immediately and don't let fixing it hurt.

We are here to help if you decide you want to try cpap and want help.

We are here to listen to you vent about the injustices of life if that is what you need to do. Some people will pat you on the back and say "there, there" and some people will come at you with a 2 X 4 trying to get your attention.

You do have options though and just because you are presented with the gold standard option there is no one forcing you to take it. You can request to be evaluated for the other options. Every single one of your "issues" with cpap can be dealt with but only if you want to put forth the effort to deal with any issues you might have. No one ever said it was going to be easy.
But you have a bad back...and you deal with it. Cpap is no different...we find ways to deal with the difficulties.

I don't know how bad your OSA is (that information is available on your sleep study reports and if you don't have them you should request them) and how viable the other options might be would depend on just what was found in your sleep study.

I will say this...if you don't at least try something there is zero chance of improving anything. Try the cpap while waiting for and getting the second opinion about the other alternatives to cpap. If for no other reason than to keep the wife happy. It might not be the end of the world as you expect it to be but if it is you can honestly say you tried it and move on to alternatives once you figure out exactly what your alternatives are.
Some therapy is better than no therapy.

Pugsy wrote: I will say this...if you don't at least try something there is zero chance of improving anything. Try the cpap while waiting for and getting the second opinion about the other alternatives to cpap. If for no other reason than to keep the wife happy. It might not be the end of the world as you expect it to be but if it is you can honestly say you tried it and move on to alternatives once you figure out exactly what your alternatives are.
Some therapy is better than no therapy.

Stop being logical!

Logic is only valid when I use it against somebody - not when it's used against me...

TooNew wrote: Stop being logical!
Logic is only valid when I use it against somebody - not when it's used against me...

Thank goodness, you have a sense of humour!! (Unlike a regular poster I won't name who holds a similar opinion.) That's a great quality to bring into play (pun intended) when presented with new ideas or practises. It can often see one through the tough spots.

Wishing you the best as you move forward,
Jean

TooNew wrote:primary risk being overweight

"It's not the size of the neck on the outside; it's the size of the airway inside the neck." - Dr. Mack Jones

TooNew wrote:

The most common OSA surgery is called UPPP. It typically costs somewhere between $2000 and $10,000 (as compared to the $500-$1000 cost of a CPAP/APAP).

I'm aware that UPPP has a low success rate - I was thinking of the lower jaw surgery - something advancement.

A quick web search leads to these two links:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1312227/ is a scientific paper about surgical management of sleep apnea. There are apparently multiple types of lower jaw surgery. The least invasive one, however, has a study where the authors "reported a 67% success rate, with failures related to obesity and abnormal mandibular skeletal development." (The abstract does NOT define what criteria the authors use for "success rate", and with a only a 2/3 chance of meeting the author's definition of "success" that's kind of an important omission from the abstract.) The most effective of the surgeries listed in the paper is called maxillomandibular advancement surgery, and that's the one this paper is about. Maxillomandibular advancement surgery is highly invasive surgery with a long recovery period. And notably, maxillomandibular advancement surgery appears to be effective only for patients with specific physical structures in their upper airway and facial muscles. The authors' published success rate (for a three year period) appears to be based on their very careful screening of the patients in the study----people who did not have a specific facial morphology type were not operated on. Planning the surgery takes substantial time (and undoubtedly adds to the cost). As a positive, the surgeons who wrote this paper have developed a technique that does not involve wiring the jaws shut during surgery, and that does mean patients are less uncomfortable during the recovery period.

http://mandibulartori.com/2013/09/mandi ... rgery.html ---from a group of oral surgeons (DDS) that does the surgery. Notably the advertised cost of the most complete surgery (the one the previous article is about) is listed as $50,000. Compare that to a CPAP and you'll immediately understand why a much cheaper, noninvasive, highly effective therapy (CPAP) is offered to patients as the first line therapy instead of the surgery that you are now talking about. Many insurance companies that do pay for OSA-related surgery will also require that CPAP be tried first and will only pay for the surgery if the patient is either in the very small group of patients for whom CPAP is ineffective even when the patient is fully compliant with CPAP (i.e. uses it as directed) OR has been tried and the patient cannot adjust to the use the CPAP after extended efforts to solve the CPAP-related problems have been made. Your personal insurance may be so good that it doesn't impose rules on who qualifies for OSA-related surgery, but that means that you have exceptional good insurance.

Recovery time from the surgery is listed as being as long as 2-3 months if breaking the jaw is required, as it frequently is. If the jaw does not need to be broken, the recovery time is listed as 3-4 weeks. For a significant part of the recovery time, the patient must comply with a liquid only diet.

And the oral surgeons who run the mandibulartori.com sight also specifically say that the mandibular advancement surgery is used when "other treatments ( nasal surgery, tonsillectomy , Uvulopalatopharyngoplasty , tongue reduction surgery ) have failed."

Notably, they don't say what they consider "successful" surgery to be, nor do they indicate whether they routinely send their patients back to the sleep lab to confirm the AHI has been appropriately reduced after the tissues have had a full chance to heal.

So it seems to me that if you really want to compare apples to oranges, fine. But quite frankly, between how invasive the maxillomandibular advancement surgery is, the long recover time, and the fact that you're on a liquid diet for the recovery, it seems to me that a standard one or two month CPAP adjustment period is a walk in the park compared to the surgery. Heck, reading about the maxillomandibular advancement surgery is enough to have convinced me that my highly out of the ordinary 6 month long CPAP adjustment period from hell was less of a problem than this surgery would have been. But that's just me: I don't want people cutting into me if I can avoid it, and I really, really don't think dealing with a liquid diet for 2 or 3 months would have been easier than my 6 month CPAP adjustment was. And keep in mind----MY CPAP adjustment was an exceptionally long and hard one: Most people who decide to make CPAP work are sleeping well within 1-2 months and feeling well within 1-2 months.

In either case, cost is not an issue as I have coverage for either way it goes. I do think you're underestimating the costs for CPAP though...

As someone who as been using a BiPAP for almost 7 years married to a husband has been using an APAP, I am fully aware of the long term costs of a CPAP.

WITHOUT insurance: A plain APAP costs roughly $1000 without insurance. An expensive full data CPAP runs roughly $800. A plain old, non-full data name brand CPAP can be bought for as little as $350-500. Cheaper, less well known CPAPs are even less expensive. If you don't believe me, just out our host, cpap.com's prices for yourself.

Then there are the supplies: If the machine requires a separate heated humdifier, add on about $250 or $300 (at most). Masks run from roughly $60-$150. Filters are roughly $2-$5. Cheap nonbrand nonheated hoses can be as little as $10 (or less). Name brand ones run $30. Heated hoses run $40 or so.

People who have insurance find that their insurance usually pays for a substantial portion of the PAP machine and the PAP supplies.

I'll also add this: It's a pretty rare insurance company that covers the cost of maxillomandibular advancement surgery for a patient who has not even tried CPAP therapy to treat OSA. Yours might be the exception, but for most people, insurance is not going to pay for OSA surgery, let alone expensive maxillomandibular advancement surgery as the first treatment option for OSA.

As for CPAP vs surgery, shouldn't treatment for chronic conditions be presented to the patient? ALL treatment options? Shouldn't the patient be able to choose what they feel is best?

One of my other issues (primary risk being overweight - which I have never been) was presented the same way. HERE is your solution. Doesn't matter how many other solutions there are (surgery was one), WE will decide what you need.

Actually this is pretty typical for a lot of medical conditions in the US. The reason why is the need to balance of the cost (to the INSURANCE company) with effective treatment of the condition that involves the smallest number of potential serious complications (to the patient).

There are patients all over the US with all kinds of conditions who are told: Here's the FIRST standard treatment. We start there. If the FIRST standard treatment fails, we move on to something else.

In your case, you are asking for the privilege of spending $50,000 of somebody else's money (your insurance company) for a condition that doctors know can be treated effectively in the vast majority of patients for a fraction of that cost with a totally safe, highly effective, noninvasive therapy just because you don't even want to try CPAP.

robysue wrote: In your case, you are asking for the privilege of spending $50,000 of somebody else's money (your insurance company) for a condition that doctors know can be treated effectively in the vast majority of patients for a fraction of that cost with a totally safe, highly effective, noninvasive therapy just because you don't even want to try CPAP.

While I am not a fan of surgery, I don't fear it either - especially if it's a one procedure cure. I was fully prepared to have surgery for one of my prior issues until further (competent) testing revealed the condition was the rarer form (of a condition I had no risk factors for) and had no surgical cure. So I was shafted there.

My other prior condition (also no risk factors) was of the rarer type with it being idiopathic. I had every single test and examination that could be the least bit related to the condition and was told "we don't know, so there's nothing we can do". There we go again.

Now this third issue - no additional risk factors (I can't change my age or gender) and I'm again being offered a take it or leave it solution. Granted, once I get my full report, I will probably fall into the category of "there's nothing else we can do", as that seems to be the way my health issues go.

Oh, and all 3 issues have happened in the last 4 years. Prior to that, I had zero issues, so give please me some leeway to feel pissed off (not at anyone here, just life in general).

Wow! What a thread!

Toonew, You are now in the wrong forum. These people in this forum are great with all matters CPAP. Consider ceasing to waste their time and instead take your woes and stinking attitude to https://www.mentalhealthforum.net/

When you are healed, come back here for help with CPAP.

robysue wrote:In your case, you are asking for the privilege of spending $50,000 of somebody else's money (your insurance company)

I think you misspoke. Insurance companies' only source of money is their policy holders. I would reword it, "you are asking for the privilege of spending $50,000 of our money."