My sleep apnea cured?

[49er]

Good point...

It's always easy to be righteous on someone else's dime, but you have to decide for yourself.

Thanks!

[kteague]

As I have mentioned previously on this forum, most people, including well respected sleep apnea surgeons would agree that pap therapy should always be tried first. The question though is even in best case scenario (person tried to optimize therapy with this forum's help), the person finds that pap therapy isn't working, how long should they continue with pap therapy if they have been trying for at least a year before pursuing alternatives? Another year, two years five years, ten years? Or stay on pap therapy no matter what? 49er

I think most of us are hesitant toward acceptance of that which we have not experienced. It doesn't come natural. It is hard to understand an experience radically different than our own, or of that reported by the masses. Yes, many fail at CPAP due to lack of instruction or support, or simply because they didn't want to use CPAP. My guess is that's the majority of those who give up, and those of us who are CPAP crusaders can be quite zealous with the message. But there will always be the exceptions to our understanding. Those for whom a surgical procedure did work. Those for whom CPAP did not. I don't have to understand it. I don't have to experience it. But that doesn't invalidate another's experience. I'm really not in the discussion about who said what and in what manner. Learning how to say it's not my battle/business. I just want to say that you are one of the forum members who keep me mindful of the limitations of my understanding. Your struggles are longstanding, and your efforts to make CPAP work are just as long. I don't know the answer to your question of "how long?" but I would hope that your efforts would be respected regardless of the outcome. I cannot fathom a struggle this long - my CPAP struggles were less than a year. My leg issues, well, they gave me a reality check about how it is to experience something horrid that others can't conceive. Just wanted to tell you good luck in your efforts.

[Pugsy]

For the OP who started all this...I hope you get a follow up sleep study done in a sleep lab to confirm the status of how well the surgery resolved your sleep apnea issues. Maybe in about 6 months after everything has healed well.

For others....while I wouldn't personally want to go under the knife for a sleep apnea solution, I have been lucky in that cpap therapy was successful in my situation so I don't have to make that choice. If I hadn't been successful for whatever reason then I might very well look for surgical alternatives in my situation because my OSA is severe and the O2 levels went dangerously low.
We on this forum hear about the surgical failures when people do elect to have the surgery and come here when the surgery didn't help. We never hear about the success stories because they have no need to even come here. I have no doubt that there are a lot of people out there who never make it to our forum.

For the people who simply can't tolerate cpap therapy for whatever reason...if the choice is surgery or no therapy at all...I would choose surgery if all my other options had been tried. Even if the surgery isn't a total cure...some therapy is still better than no therapy. While it of course is not ideal nor is it what most of us here would accept...it is better than no therapy.

In the OP's situation here...dragging out the 2 X 4s now is a little late and I cringed when I saw some of the 2 X 4 swinging going on. Most assumed the worst and the surgery would be a total waste of time and a complete failure and that's simply not true. We have no way of knowing how successful or not the surgery was. Not only do we rain on the parade...we give it a good monsoon drenching. I just don't understand how people can assume the worst and total failure and all that without even considering the possibility that even if this was 100% successful (by our standards) it is still better than no therapy.
Instead of blasting the guy for doing something stupid because it is already done and can't be undone...how about a little support for what was done and some practical advice like a few people mentioned here...

Get a follow up sleep study after well healed to evaluate how well the sleep apnea was addressed.

[Heart Jumping]

HJ,

You may be off base:

https://www.zocdoc.com/answers/7086/doe ... olve-chemo

""In some cases, if a tumor is diagnosed early, surgery may be curative and chemotherapy will not be needed.""

http://hereandnow.wbur.org/2015/10/02/c ... ncer-study

"Now, a landmark study, sponsored by the National Cancer Institute and published in the New England Journal of Medicine, finds that many women with early stage breast cancer can skip chemotherapy and do just fine."

49er

49er, hopefully you caught my later post explaining that was sarcasm, and I have just now updated it with a note that it was sarcasm, I didn't nor would I ever tell someone that. In fact what you just said was one of the points of my sarcasm, some people here jumped on and said the surgery wouldn't be successful when it can, and without knowing any of the facts of the posters situation.

[ChicagoGranny]

UPPP

Regarding some of the posts in this thread, the surgical removal of tonsils (and adenoids) is not part of a UPPP, and the surgery can be evaluated and performed independent of a decision on UPPP.

For patients who have truly failed at CPAP and MADs, I would not go with UPPP as a second-line treatment. Instead, an implanted electrical stimulation device (Inspire Medical for example) would be the second-line treatment for patients who meet the selection criteria. The surgery is relatively easy, and the recovery is easy and quick. No permanent changes are made to any part of the body, and the device and electrical leads can be easily removed should there ever be a reason to.

UPPP should be reserved for the worse cases who have failed at CPAP, MAD and implantable device.

[Lucyhere]

In the OP's situation here...dragging out the 2 X 4s now is a little late and I cringed when I saw some of the 2 X 4 swinging going on. Most assumed the worst and the surgery would be a total waste of time and a complete failure and that's simply not true. We have no way of knowing how successful or not the surgery was. Not only do we rain on the parade...we give it a good monsoon drenching. I just don't understand how people can assume the worst and total failure and all that without even considering the possibility that even if this was 100% successful (by our standards) it is still better than no therapy.
Instead of blasting the guy for doing something stupid because it is already done and can't be undone...how about a little support for what was done and some practical advice like a few people mentioned here...

B R A V O

[Journey to Sleep]

I'm very skeptical, but would definitely like you to follow up on this one later on.

[Not Fade]

In the OP's situation here...dragging out the 2 X 4s now is a little late and I cringed when I saw some of the 2 X 4 swinging going on.

But as you have already mentioned, the deal is done, and nothing that is posted here, however harsh it may be, will undo the OP's UPPP or affect the success or failure of the UPPP.

But, what can be done is to warn others about the inadvisability of UPPP.

I doubt the OP will be back, but he should be asked some questions.

I got a CPAP machine when I was diagnosed but never really got used to it so tried several things including turbinectomy 11 years ago, pillar implants 8 years ago and dental appliance. None of these worked and always had to go back to being a slave of the CPAP machine.

Before you declared CPAP a failure, (1) Did you have a data-capable machine and software? (2) Did you use a resource like cpaptalk dot com to fully troubleshoot the problems you were having with CPAP? (3) What about CPAP made you consider that you were a slave to it?

Well, those would be the starting questions.

[Heart Jumping]

But as you have already mentioned, the deal is done, and nothing that is posted here, however harsh it may be, will undo the OP's UPPP or affect the success or failure of the UPPP.

But, what can be done is to warn others about the inadvisability of UPPP.

If by that you mean "please get a second opinion from a sleep specialist and make sure this surgery is right for you", sounds great. If you mean warning people that something is inadvisable when in fact it's a solution for some people, doesn't sound great.

I doubt the OP will be back...

Ya, I think it's safe guess to say he may not be after that reception. Besides, people who don't register and set notifications are less likely to come back.

I got a CPAP machine when I was diagnosed but never really got used to it so tried several things including turbinectomy 11 years ago, pillar implants 8 years ago and dental appliance. None of these worked and always had to go back to being a slave of the CPAP machine.

but he should be asked some questions.

Before you declared CPAP a failure, (1) Did you have a data-capable machine and software? (2) Did you use a resource like cpaptalk dot com to fully troubleshoot the problems you were having with CPAP? (3) What about CPAP made you consider that you were a slave to it?

Well, those would be the starting questions.

Why in the world should he be asked those questions? Is this a contest to prove him wrong? He's had the surgery. I'd think the main question/advice should be, "how do you know you are cured, please make sure you get tested and followed up with and make sure you don't need cpap". Which any competent specialist would absolutely be doing, you don't just give someone this surgery and not have subsequent follow ups, but the patient should also know to do so for him/her self.

[LSAT]

Why in the world should he be asked those questions? Is this a contest to prove him wrong? He's had the surgery. I'd think the main question/advice should be, "how do you know you are cured, please make sure you get tested and followed up with and make sure you don't need cpap". Which any competent specialist would absolutely be doing, you don't just give someone this surgery and not have subsequent follow ups, but the patient should also know to do so for him/her self.

Perhaps they were just being sarcastic...

[Heart Jumping]

Perhaps they were just being sarcastic...

Touche .

[49er]

HJ,

You may be off base:

https://www.zocdoc.com/answers/7086/doe ... olve-chemo

""In some cases, if a tumor is diagnosed early, surgery may be curative and chemotherapy will not be needed.""

http://hereandnow.wbur.org/2015/10/02/c ... ncer-study

"Now, a landmark study, sponsored by the National Cancer Institute and published in the New England Journal of Medicine, finds that many women with early stage breast cancer can skip chemotherapy and do just fine."

49er

49er, hopefully you caught my later post explaining that was sarcasm, and I have just now updated it with a note that it was sarcasm, I didn't nor would I ever tell someone that. In fact what you just said was one of the points of my sarcasm, some people here jumped on and said the surgery wouldn't be successful when it can, and without knowing any of the facts of the posters situation.

Thanks for clarifying HJ.

49er

[49er]

For the OP who started all this...I hope you get a follow up sleep study done in a sleep lab to confirm the status of how well the surgery resolved your sleep apnea issues. Maybe in about 6 months after everything has healed well.

For others....while I wouldn't personally want to go under the knife for a sleep apnea solution, I have been lucky in that cpap therapy was successful in my situation so I don't have to make that choice. If I hadn't been successful for whatever reason then I might very well look for surgical alternatives in my situation because my OSA is severe and the O2 levels went dangerously low.
We on this forum hear about the surgical failures when people do elect to have the surgery and come here when the surgery didn't help. We never hear about the success stories because they have no need to even come here. I have no doubt that there are a lot of people out there who never make it to our forum.

For the people who simply can't tolerate cpap therapy for whatever reason...if the choice is surgery or no therapy at all...I would choose surgery if all my other options had been tried. Even if the surgery isn't a total cure...some therapy is still better than no therapy. While it of course is not ideal nor is it what most of us here would accept...it is better than no therapy.

In the OP's situation here...dragging out the 2 X 4s now is a little late and I cringed when I saw some of the 2 X 4 swinging going on. Most assumed the worst and the surgery would be a total waste of time and a complete failure and that's simply not true. We have no way of knowing how successful or not the surgery was. Not only do we rain on the parade...we give it a good monsoon drenching. I just don't understand how people can assume the worst and total failure and all that without even considering the possibility that even if this was 100% successful (by our standards) it is still better than no therapy.
Instead of blasting the guy for doing something stupid because it is already done and can't be undone...how about a little support for what was done and some practical advice like a few people mentioned here...

Get a follow up sleep study after well healed to evaluate how well the sleep apnea was addressed.

Great post Pugsy. I am going to save this and provide a link to it in case god forbid a similar type discussion occurs in the future.

[49er]

Thanks kteague for your support. I am encouraged by some of the later posts in the thread that do show an understanding of the situation and how surgery may be the only choice.

You are so right about many people not understanding a situation that is different from theirs and to be honest, I have been guilty of that myself until I had specific experiences that made me see the light and how I had been wrong.

As I have mentioned previously on this forum, most people, including well respected sleep apnea surgeons would agree that pap therapy should always be tried first. The question though is even in best case scenario (person tried to optimize therapy with this forum's help), the person finds that pap therapy isn't working, how long should they continue with pap therapy if they have been trying for at least a year before pursuing alternatives? Another year, two years five years, ten years? Or stay on pap therapy no matter what? 49er

I think most of us are hesitant toward acceptance of that which we have not experienced. It doesn't come natural. It is hard to understand an experience radically different than our own, or of that reported by the masses. Yes, many fail at CPAP due to lack of instruction or support, or simply because they didn't want to use CPAP. My guess is that's the majority of those who give up, and those of us who are CPAP crusaders can be quite zealous with the message. But there will always be the exceptions to our understanding. Those for whom a surgical procedure did work. Those for whom CPAP did not. I don't have to understand it. I don't have to experience it. But that doesn't invalidate another's experience. I'm really not in the discussion about who said what and in what manner. Learning how to say it's not my battle/business. I just want to say that you are one of the forum members who keep me mindful of the limitations of my understanding. Your struggles are longstanding, and your efforts to make CPAP work are just as long. I don't know the answer to your question of "how long?" but I would hope that your efforts would be respected regardless of the outcome. I cannot fathom a struggle this long - my CPAP struggles were less than a year. My leg issues, well, they gave me a reality check about how it is to experience something horrid that others can't conceive. Just wanted to tell you good luck in your efforts.

[Air Jordan]

Not Fade wrote:
But as you have already mentioned, the deal is done, and nothing that is posted here, however harsh it may be, will undo the OP's UPPP or affect the success or failure of the UPPP.

But, what can be done is to warn others about the inadvisability of UPPP.

If by that you mean "please get a second opinion from a sleep specialist and make sure this surgery is right for you", sounds great.

No, I don't think he means that.

but he should be asked some questions.

Before you declared CPAP a failure, (1) Did you have a data-capable machine and software? (2) Did you use a resource like cpaptalk dot com to fully troubleshoot the problems you were having with CPAP? (3) What about CPAP made you consider that you were a slave to it?

Well, those would be the starting questions.


Why in the world should he be asked those questions? Is this a contest to prove him wrong?

No, you totally missed the point of Not Fade's post. It was:

to warn others about the inadvisability of UPPP.

It's amazing what a newbie can learn from this forum in just a few days by lurking and reading posts. My sleep doctor suggested that I look into a UPPP. After reading posts, including some very old ones, throughout this forum, I will be committed to CPAP.

Don't forget there are thousands of people who find this site who never register or never post. If they stumble across the OP's post, it would be bad if they thought it was a success story for UPPP.

I, for one, am appreciative of the harsh negative comments. No cutting up my throat!