Not Trying to Stir Up Trouble...But...

[BlackSpinner]

I'm basing most of what I know about my situation on what the doctor told me. He gave me a choice about using the CPAP based on the results of my study. Of course, it's always a choice. But he believes that my very LARGE tonsils are part of what's obstructing my breathing. I was told to get them out 11 years ago and that they probably were contributing to sleep issues. But I was too scared to get surgery. Now they have a laser procedure that is much simpler. I'm still afraid of getting that procedure at this point. I would hope that if there was something else in the study that I needed to know or be aware of, he would have told me..

Smart of you. Having ones tonsils out as an adult is not a minor thing.
My ex husband had them out due too many incidents of strep throat - yes it is day surgery but recovery is long and unpleasant. Given the choice of surgery or cpap machine I would opt for the cpap machine.


Remember AHI is an average based on several hours of sleep. If they all cluster during REM and cause major desats that is a nasty problem. That is why you want to see your study and to see you stats in sleepyhead. Also remember that if you have heart issues then the insurance will cover your cpap therapy in a blink even if you don't meet "mild" - there is a reason for that.

[corvallisgrace75]

It's a colorful, diverse world out there. You never know what you're going to find! Especially in a box of chocolates.

Did either study indicate that the author conducted the actual study? So many of these articles simply compile meta data from several studies conducted by others. That leaves them free to discard any study that does not conform to their objective going in.

There have been numerous posts here by folks who had the surgery, got the bill, got the pain, but little or no results. Most of them recommend against surgery for OSA (obstructive sleep apnea).
I have a severe allergy to scalpels.

Bwexler-- so are you saying that many people on this forum got their tonsils out as a result of their sleep studies? That their very large tonsils are part of the reason for the obstructions? Or is there a different type of surgery that you're referring to? My doctor was surprised that I still have my tonsils. In my parent's day and age, everyone got their tonsils out at 5 years old. I hear it's a horrid surgery to get as an adult. But the new laser procedure is supposed to be quite tolerable. Again, I'm wondering about people on this forum who have been told to get their tonsils out as a result of their sleep study. I'm guessing that people don't come to forums like this because they don't end up using a CPAP. So I'm probably beating a dead horse here. Haha!

Both articles contained a compilation of data from various studies. It seems that this does represent the majority of studies I've read-- about anything. That's why you'll always find "evidence" that could point to either side. Bias all around. Certainly worked for all the people who believed Andrew Wakefield and his now debunked assertion that vaccines cause autims. Psshh!

Palerider-- that's a very good point about masks being different now. I think it could very well modify or invalidate the data from back then. I'm trying to do some more searching and it's a challenge. I like that people here post links, but I also like to "stumble" upon things myself, too.

[corvallisgrace75]

You are worried about Resmed funding that study, I wonder about your doctor being a surgeon, it's his job to see answers that he can provide, as better solutions.

In the wild, Elephant hunters, do tend to see elephants, it's the nature of things. I had me tonsils out as a young child, th a t is much easier, but even then they can grow back. As long as a little blown clean air slaves my sleep apnea, it will be the answer for me. We all must find our own answers, and live with them. Jim

I'm not actually worried about ResMed funding that study. I find it interesting. My doctor is not a surgeon. He referred me to an ENT and encouraged me to follow up if I chose to do so. He understands that he's not an expert in everything and that other factors contribute which are better addressed by other specialists.

Just as there are newer masks that may render studies from 2007 obsolete, there are newer procedures for removing tonsils that are a far cry from how they were removed even 5 years ago. Again, I'm not saying that I plan to stop using the CPAP. I just find it interesting that my doctor presented both options as viable solutions-- CPAP or tonsil removal. I think keeping an open mind about what works and can address the problem is important. And that may be more than one thing.

[Julie]

I think what some are too polite to say is that ENT surgeons can be scalpel happy like any other surgeons, and are often quite happy to recommend that you get your tonsils out, suggesting that they're too large, etc. But unfortunately very many who've had it done find out that a) their OSA is still present, and b) the surgery (as an adult) was very painful for a long time.

Unless you are told your tonsils are actually life threatening in some way (and I don't mean "untreated OSA can kill you") I'd be extremely reluctant to sign up for surgery.

[palerider]

Palerider-- that's a very good point about masks being different now. I think it could very well modify or invalidate the data from back then. I'm trying to do some more searching and it's a challenge. I like that people here post links, but I also like to "stumble" upon things myself, too.

both the masks and the machines have made huge leaps since 2007.

there was nothing like the p10 mask, or the f10. the autosets of the day back then couldn't tell the difference in an obstrucive or a central apnea, they weren't as gentle with pressure changes, the whole situation is a lot better now than it was then.

[palerider]

I think what some are too polite to say is that ENT surgeons can be scalpel happy like any other surgeons, and are often quite happy to recommending that you get your tonsils out,

when your only tool is a hammer, lots of things look like a nail.

[bwexler]

It's a colorful, diverse world out there. You never know what you're going to find! Especially in a box of chocolates.

Did either study indicate that the author conducted the actual study? So many of these articles simply compile meta data from several studies conducted by others. That leaves them free to discard any study that does not conform to their objective going in.

There have been numerous posts here by folks who had the surgery, got the bill, got the pain, but little or no results. Most of them recommend against surgery for OSA (obstructive sleep apnea).
I have a severe allergy to scalpels.

Bwexler-- so are you saying that many people on this forum got their tonsils out as a result of their sleep studies? That their very large tonsils are part of the reason for the obstructions? Or is there a different type of surgery that you're referring to? My doctor was surprised that I still have my tonsils. In my parent's day and age, everyone got their tonsils out at 5 years old. I hear it's a horrid surgery to get as an adult. But the new laser procedure is supposed to be quite tolerable. Again, I'm wondering about people on this forum who have been told to get their tonsils out as a result of their sleep study. I'm guessing that people don't come to forums like this because they don't end up using a CPAP. So I'm probably beating a dead horse here. Haha!

Both articles contained a compilation of data from various studies. It seems that this does represent the majority of studies I've read-- about anything. That's why you'll always find "evidence" that could point to either side. Bias all around. Certainly worked for all the people who believed Andrew Wakefield and his now debunked assertion that vaccines cause autims. Psshh!

Palerider-- that's a very good point about masks being different now. I think it could very well modify or invalidate the data from back then. I'm trying to do some more searching and it's a challenge. I like that people here post links, but I also like to "stumble" upon things myself, too.

People here have used an alphabet soup of acronyms to describe their surgeries. It teams tonsils are a small percentage of what has been mentioned. Because of my allergy (to scalpels) I don't pay much attention to the details of the various surgeries, especially since most of the reports are negative.
As to the debunked vaccine allegations, I know several families who firmly believe their child's Autism was connected to vaccines. This is purely anecdotal information. I would err on the side of caution and not expose my children to the multitude of vaccines currently recommended for infants. I am not saying I would avoid all, but would be selective and perhaps space them out over years rather than weeks or months. For me this is really a moot question since even my youngest grandchildren are well beyond the age in question. The next generation will not likely pay much attention to grand dads opinion on these matters.

[palerider]

As to the debunked vaccine allegations, I know several families who firmly believe their child's Autism was connected to vaccines.

there are also people that firmly believe the world is flat, the sun revolves around the earth, and thousands of other nonsensical things...

but that's what belief is, having an opinion on something without any evidence. doesn't make it true.

[OSAHell]

Hi corvallisgrace75,

Here my thoughts/opinions. You said that your sleep Dr BELIEVE that your very large tonsils are part of what's obstructing your breathing. It might do the job removing it or it might not. IMHO, the truth is, that you'll only be sure when your tonsils is removed and you pass an OTHER sleep study AFTER the surgery.

The other thing to consider is your sleep study. It represent only 1 night in your life and, for many, not the best in term of sleep time. From my point of view the study you should focus on, is your own FULL PSG report from your sleep study, just ask your Dr to get a copy (should be 4 pages or more). Also, you can get a lot of infos from your machine right now using a software like Sleepyhead. Both, the report and CPAP detailed data, can give better view of your personal case that might help in your decision making. But if you and your Dr believe that removing your tonsils could help a lot, just do the surgery and then go on an other sleep study and you'll know. Like someone says, every one is different, but that way, you'll know how much the surgery helped for your own particular case.

From my own experience when I have an average AHI > 8 for more than a week on CPAP, I start getting many sleep apnea symptoms back.

Personally I would go with CPAP and work on my sleep habits and then see how it goes, surgery can always come later.

My 2 cents!

[Sheffey]

I was found to have 10 awakenings/hour.

Let's say your bedroom had a bell that rang 10 times every hour waking you up each time. How healthy and sane do you think you would be after one night? One week? One year? Five years?

I was found to have 10 awakenings/hour.

Do you know when these events occurred? What positions you were sleeping in? How many minutes you slept in each sleep stage and how many events you had in each stage?

Knowing your AHI is not nearly enough information to make a decision on whether to treat or not. You need more information much of which is in your sleep study summary.

I think some of my sleepiness could probably be attributed to poor sleep habits, my weight, medications, anxiety, etc.

For sure.

Thus far, nobody has commented about their sleep habits and the role that these habits may play in contributing to sleep quality and feelings of restfulness.

Search Chicagogranny's posts. She posts nearly every day about how important this is and what to do. Many, many people have poor habits that cause them lots of problems. Granny has a simple thing she posts stating what should be done - use the search funtion.

Maybe Dr. Littner is still out there. He's from UCLA and I live about 20 minutes away from UCLA. Maybe I should go knock on his door and ask for his opinion-- if it's changed and what he thinks. I'm kidding, obviously.

If you are looking for excuses not to treat, you will find plenty of them. But this will not be a place you want to hang out repeating excuses - most of us are committed users.

I was told by my sleep doctor that if I had my very large tonsils removed, it would cut my awakenings in half

Cut them in half? If he is honest, he also told you this is a wild guess.

Is your sleep doctor also a practicing ENT? If not, you should get a referral to an ENT who is very familiar with obstructive sleep apnea. Let him examine your airway and give you an opinion on tonsillectomy and possible improvement in your sleep apnea.

I was told to get them out 11 years ago and that they probably were contributing to sleep issues. But I was too scared to get surgery. Now they have a laser procedure that is much simpler. But the new laser procedure is supposed to be quite tolerable.

Just about all types of surgery have seen improvements in technique over time. But don't expect an easy recovery because lasers were used. The lasers are still cutting out your tonsils and the pain and recovery are hardly any different than if cut out using traditional surgical tools.

But I would not dissuade you from having the tonsils removed. Just get a second opinion from an ENT/Surgeon and make sure he takes some time to discuss his opinion with you and answer all questions.

I have a very good ENT whom I trust and if he told me my tonsils should come out, I would not worry about and would just get it done.

[corvallisgrace75]

I think what some are too polite to say is that ENT surgeons can be scalpel happy like any other surgeons, and are often quite happy to recommending that you get your tonsils out, suggesting that they're too large, etc. But unfortunately very many who've had it done find out that a) their OSA is still present, and b) the surgery (as an adult) was very painful for a long time.

Unless you are told your tonsils are actually life threatening in some way (and I don't mean "untreated OSA can kill you") I'd be extremely reluctant to sign up for surgery.

Haha, yes Julie, I have come across a few scalpel happy doctors. My OB GYN was ready to rip out my fibroid before I even walked into her office. I got a second opinion and was advised that it was not at all necessary....Anyway, I would not choose to have a tonsillectomy. There's a laser procedure that has become more common. I researched it 11 years ago and begged for it. But it wasn't common or covered then. Come to find out, it's now quite prevalent. Laser-assisted tonsil ablation. My doctor didn't seem to have a vested interest in what I chose to do. He simply wanted me to know what my options were.

As I mentioned in a previous post, there probably aren't too many people on this forum (if any) who went through a sleep study and were advised to get their tonsils out. Just as masks have improved in time, the procedures available to remove one's tonsils have changed/improved. Doesn't mean I'm jonesing to do it. My anecdotal experience is that the gal who had her tonsils removed via laser is doing great. She repeated the sleep study after having them removed and apparently everything was fine. People like her aren't going to come to a forum like this, so unfortunately, I'm probably not going to get an accurate picture of the variety of situations that exist out there. As it is, two of my friends who use the CPAP asked why I would choose to go on a forum. I mentioned that I was looking for support and information. I have found that here, but I know that this forum does not capture or represent the full range of experiences out there. So I appreciate the information given to me but also know to take it with a grain of salt. Such is the nature of any forum. There's a contingency of folks who feel as though things are going fine and don't see the need for a forum. My friends are an example. And I keep that in mind as much as I keep in mind those who choose to come here. There's value in many different choices.

[corvallisgrace75]

Hi corvallisgrace75,

Here my thoughts/opinions. You said that your sleep Dr BELIEVE that your very large tonsils are part of what's obstructing your breathing. It might do the job removing it or it might not. IMHO, the truth is, that you'll only be sure when your tonsils is removed and you pass an OTHER sleep study AFTER the surgery.

The other thing to consider is your sleep study. It represent only 1 night in your life and, for many, not the best in term of sleep time. From my point of view the study you should focus on, is your own FULL PSG report from your sleep study, just ask your Dr to get a copy (should be 4 pages or more). Also, you can get a lot of infos from your machine right now using a software like Sleepyhead. Both, the report and CPAP detailed data, can give better view of your personal case that might help in your decision making. But if you and your Dr believe that removing your tonsils could help a lot, just do the surgery and then go on an other sleep study and you'll know. Like someone says, every one is different, but that way, you'll know how much the surgery helped for your own particular case.

From my own experience when I have an average AHI > 8 for more than a week on CPAP, I start getting many sleep apnea symptoms back.

Personally I would go with CPAP and work on my sleep habits and then see how it goes, surgery can always come later.

My 2 cents!

Thank you for your 2 cents! That first night of the sleep study was one of the most awful nights of sleep I have ever had. I had just been put on a new medication and hadn't been sleeping very well to begin with. I will definitely get the full report of my sleep study. I think that would be really good information to have.

Nonetheless, I think I have mistakenly steered this topic in the wrong direction. When I mentioned the removal of tonsils, it was to explain that my doctor felt it was a viable course of action to pursue for my apnea. He didn't present the CPAP as the only solution. If my sleep apnea had been severe, or even moderate, I don't imagine that he would present this as an alternative. That was part of my explanation about my apnea being diagnosed as "mild". I was trying to provide some perspective on what I was told about my study.

The bottom line for me is this: I plan to continue wearing the CPAP. I never once said that I wanted to stop using it. What was concerning to me was whether I'd receive any noticeable benefits from it. I was disappointed because I really want to believe that it will help. Of course, time will tell. If masks are different now, that's very hopeful. I need to look back at one of the links that Julie provided, because I'm having a hard time finding more recent data. But I find it interesting that people were so quick to discredit these studies, possibly without even reading them. Yes, they are 8 years old and much has changed. But they were the first studies that came up. I tried a lot of different search terms. Not everything was as clear cut as one would hope, but I do have a subscription to PubMed, so I can use that to my advantage as well, fortunately.

[corvallisgrace75]

I was found to have 10 awakenings/hour.

Let's say your bedroom had a bell that rang 10 times every hour waking you up each time. How healthy and sane do you think you would be after one night? One week? One year? Five years?

I was found to have 10 awakenings/hour.

Do you know when these events occurred? What positions you were sleeping in? How many minutes you slept in each sleep stage and how many events you had in each stage?

Knowing your AHI is not nearly enough information to make a decision on whether to treat or not. You need more information much of which is in your sleep study summary.

I think some of my sleepiness could probably be attributed to poor sleep habits, my weight, medications, anxiety, etc.

For sure.

Thus far, nobody has commented about their sleep habits and the role that these habits may play in contributing to sleep quality and feelings of restfulness.

Search Chicagogranny's posts. She posts nearly every day about how important this is and what to do. Many, many people have poor habits that cause them lots of problems. Granny has a simple thing she posts stating what should be done - use the search funtion.

Maybe Dr. Littner is still out there. He's from UCLA and I live about 20 minutes away from UCLA. Maybe I should go knock on his door and ask for his opinion-- if it's changed and what he thinks. I'm kidding, obviously.

If you are looking for excuses not to treat, you will find plenty of them. But this will not be a place you want to hang out repeating excuses - most of us are committed users.

I was told by my sleep doctor that if I had my very large tonsils removed, it would cut my awakenings in half

Cut them in half? If he is honest, he also told you this is a wild guess.

Is your sleep doctor also a practicing ENT? If not, you should get a referral to an ENT who is very familiar with obstructive sleep apnea. Let him examine your airway and give you an opinion on tonsillectomy and possible improvement in your sleep apnea.

I was told to get them out 11 years ago and that they probably were contributing to sleep issues. But I was too scared to get surgery. Now they have a laser procedure that is much simpler. But the new laser procedure is supposed to be quite tolerable.

Just about all types of surgery have seen improvements in technique over time. But don't expect an easy recovery because lasers were used. The lasers are still cutting out your tonsils and the pain and recovery are hardly any different than if cut out using traditional surgical tools.

But I would not dissuade you from having the tonsils removed. Just get a second opinion from an ENT/Surgeon and make sure he takes some time to discuss his opinion with you and answer all questions.

I have a very good ENT whom I trust and if he told me my tonsils should come out, I would not worry about and would just get it done.

I appreciate your input, Sheffrey. The difficulty I've had with this thread and another one I contributed to, is that I feel like people aren't grasping what I'm trying to say. I've had many people pick out very specific quotes and respond to them without acknowledging the context in which they were presented. To me, that is an ineffective way of responding to somebody's questions and the information it provides is not particularly useful. And in some instances, it feels downright disrespectful. I'm trying to have an honest dialogue about my concerns, but it seems as though people want to school me and tell me I'm wrong. Some people here have posed thought provoking and interesting questions/information. For that, I am grateful. Everything else, grain of salt.

[poppi2]

...."Okay, mild or not, I'm sure there are still benefits for me."....

The one obvious benefit for my wife is that I stopped snoring. At this point, I would not be allowed to stop cpap therapy.

[library lady]

It was my doctor who told me that I had 10 awakenings per hour, based on the study I did. He did not mention how long each one was. Again, he also mentioned that removing my tonsils would remove the need for the CPAP. He posed it as an "either/or". He left the choice up to me.

I had my tonsils removed when I was 5 years old. Having your tonsils out may or may not remove the need for CPAP; the same is true for all of the surgical remedies, in part because there's no true measure of what causes OSA, just that for some reason your throat closes up so that you stop breathing.

My AHI during sleep study was 11, considered mild by my doctor. These days, according to machine data and Sleepyhead, AHI is usually <3, rarely does it get up to 5. Like you, I figured any improvement was a good thing.