URGENT: OSA surgery and quality of life

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
Giffard
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URGENT: OSA surgery and quality of life

Post by Giffard » Thu Nov 26, 2015 10:28 pm

Hello,

I'm 19, and last year my life kind of went off the rails. I always felt depressed, but since last year things got a little hardcore. I started being suicidal, extremely angry, almost BPD (although my doctors ruled out that possibility). I abused my partner mentally and physically, and then we broke off. I left Laws school, and here in Brazil it's exquisitely harder to make a living if you don't have a degree in Laws, Medicine or Engineering. Somehow these events are still stuck in my head, haunting me, leaving me unrest. Then, 2015 began and I went through therapy for severe depression - meds, counselling and exercising. Although I'm better able to control my actions, the feeling of depression never lifted: the little agonies and persistent thoughts, even suicidal ideation. It seems that the antidepressings don't work right with me, but two psychiatrists ruled out the possibility of anything different than depression or anxiety. They would say I only fit in the specificities of these mood disorders.

Then I found out that I suffer from sleep apnea, probably since I was a child. Severe obstructive sleep apnea, to say the least - I don't know the exact numbers, but the nurse was alarmed, and told us she never saw such numbers. I feel tired all the time (not sleepy, but fatigued), my concentration is poor, so is my memory, and I have significant mood issues. I went to the doctor, did all the tests needed, and they told me to use CPAP, but I was told beforehand that it probably wouldn't work well, because I have a deviated septum, enlarged tonsils and a narrow throat, so my entire respiratory system is compromised. My surgery is scheduled for next tuesday (tonsillectomy and septoplasty; the doctor also said she'll kind of move my throat muscles - I don't know the exact name of the procedure, but she told me it's not uvulopalatopharyngoplasty), and I'm extremely worried. I'm only writing this because I got very irritated a little while ago, and without any reason. I just noticed that I'm not able to live like this anymore.

What should I expect? I envy my friends because they have better lives than me. They are able to work, to keep relationships. They are brilliant students, able to deal with pressure when needed. They are independent, while I rely a lot on my family. This is not the adult life I pictured when I was younger. Will this surgery change my life for the better? If possible, leave your own stories. I feel better when I read success stories. Internet is filled with bad stories, and sometimes I'm sure it's not going to work, that my life will be like this forever, and I just can't bear it.

(Sorry for my English. I'm Brazilian, and although I had a great education compared to the rest of the country, I had to learn English by myself - no classes, just Internet. So forgive me for any mistakes)

PoolQ
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Re: URGENT: OSA surgery and quality of life

Post by PoolQ » Thu Nov 26, 2015 10:37 pm

Your English is great, better than some native speakers.
If you have not already read the above thread viewtopic/t14494/Newbie-would-like-to-h ... lease.html
pages of success stories, there are many, many of them
It is a holiday up here in the US so many people may not be checking the forums tonight, but will be back in the morning. Don't give up, you may finally have the information you have been looking for. Much of what you have told us about is common for sleep apnea and you can get a lot of feedback here.
Sleeping MUCH better now

Giffard
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Re: URGENT: OSA surgery and quality of life

Post by Giffard » Thu Nov 26, 2015 10:53 pm

PoolQ wrote:Your English is great, better than some native speakers.
If you have not already read the above thread viewtopic/t14494/Newbie-would-like-to-h ... lease.html
pages of success stories, there are many, many of them
It is a holiday up here in the US so many people may not be checking the forums tonight, but will be back in the morning. Don't give up, you may finally have the information you have been looking for. Much of what you have told us about is common for sleep apnea and you can get a lot of feedback here.
Thank you for the answer. Actually, I have seen this thread already, but there's little information about surgery success... I know, however, that "actual" sleep apnea surgery doesn't have a good success rate, and that my combination of problems might be uncommon, so only a few people do the surgery I'm going to do.

Another thing that bothers me is that sometimes I don't think my issues come from sleep deprivation. Somehow it doesn't enter my head that the way I sleep is messed up. Maybe that's because I never knew another way... but still.

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Julie
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Re: URGENT: OSA surgery and quality of life

Post by Julie » Thu Nov 26, 2015 11:09 pm

Hi, this is a great forum, lots of really knowledgable people with lots of experience, and if you want help to give Cpap a proper try (which I would very much encourage you to do before surgery) then we will help you as much as possible. You are young to have to deal with this, but then it's better than being old and have your body already damaged from too many years of not being diagnosed or treated.

Do you have a copy of your test results? If you can post them here (use Imgur.com to download it and post the link in this thread) and any pressure settings you were prescribed, we'll have somewhere to start. If you have equipment (machine/mask) also give the full names and descriptions. And any experience you have had trying Cpap at all. I think it was irresponsible - a bad idea - to tell you Cpap would not work and that you need to go straight to surgery... you may make the doctor rich, but possibly cheat yourself, though of course I don't know enough to say now.

In any case, welcome, and let us know more... and your English is very good!

PoolQ
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Re: URGENT: OSA surgery and quality of life

Post by PoolQ » Thu Nov 26, 2015 11:50 pm

I don't know anything about the surgery, but others here do.
"Somehow it doesn't enter my head that the way I sleep is messed up. Maybe that's because I never knew another way" this is very possible. My sleeping had gone downhill for so long that I did not remember good sleep.
Sleeping MUCH better now

Giffard
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Re: URGENT: OSA surgery and quality of life

Post by Giffard » Fri Nov 27, 2015 12:23 am

Thank you for the answer!

I actually tried using CPAP for a while, but as the doctor said, it doesn't work properly. Well, at least where I'm concerned. I still use it, but after a month I haven't noticed any change. She said it "probably wouldn't work", but the surgery was needed anyway because I have a deviated septum and really enlarged tonsils. At first she said my only hope would be CPAP, and surgery wouldn't solve my problem... then she came back with this solution, and I trust her.

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kaiasgram
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Re: URGENT: OSA surgery and quality of life

Post by kaiasgram » Fri Nov 27, 2015 1:03 am

Giffard wrote:Thank you for the answer!

I actually tried using CPAP for a while, but as the doctor said, it doesn't work properly. Well, at least where I'm concerned. I still use it, but after a month I haven't noticed any change. She said it "probably wouldn't work", but the surgery was needed anyway because I have a deviated septum and really enlarged tonsils. At first she said my only hope would be CPAP, and surgery wouldn't solve my problem... then she came back with this solution, and I trust her.
Giffard, since you still use your machine, could we see some of the data it records in order to understand why your doctor is saying it doesn't work properly? Some machines only count the hours of use. Others record data about mask leaks, pressure changes and apnea events. Often when people say they don't feel any better it's because their PAP therapy is not dialed in as well as it should be. When that is the case the data can tell us a lot about why.

I understand that you trust your doctor, but to be honest many doctors are not well versed in how the different CPAP machines work and what features can be adjusted for more effective treatment. If you're up for it, could you tell us the exact make and model of your machine and what pressure(s) you've used? If there is treatment data available it would be great to see a SleepyHead screenshot of a nightly report.

Neither CPAP nor surgery are guaranteed to work, so there is nothing to lose by taking a closer look at what's been going on with your CPAP therapy.

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kteague
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Re: URGENT: OSA surgery and quality of life

Post by kteague » Fri Nov 27, 2015 2:02 am

Hi. Got a couple questions for you. During the day do you mouth breathe or are you able to breathe through your nose even though it's deviated? Not all deviated septums are actually obstructed. If you cannot breathe through your nose during the day, you would need a full face mask for sleep to accommodate mouth breathing. Do you have chronically inflamed tonsils or are they just large? It may be that these surgeries will help you be able to use your CPAP better. Some here have reported that fixing their septum and enlarged tonsils helped them with CPAP use. Predicting outcome is hard for the doctors who do the surgeries, even more so for readers here. I agree with those who say it may be that some adjusting of things with your treatment could make it more effective. If you are able to access data at least you would have some confirmation whether there is yet some optimization to be done. I personally would want to know that I'd tried everything before undergoing surgery. I just want to encourage you that resolving your sleep issues has the potential to change how you feel, and how you feel about life. Getting it fine tuned can take a while. You haven't said anything that makes me think this is as good as it can get for you. In sleep apnea, sometimes the sufferer is the last to know. After all we're asleep when it happens. Wishing you the best as you tackle this. All this may be overwhelming, but you've got a lot of people here to help you sort through things.

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49er
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Re: URGENT: OSA surgery and quality of life

Post by 49er » Fri Nov 27, 2015 4:01 am

Hi Giffard,

Several issues.

Getting a septoplasty can definitely make it easier to use cpap depending on each individual situation. As kteague asked, do you have trouble breathing through your nose during the day because if you do, that is a definite indication the surgery may be helpful. It is true that many people who can't use full face masks but in other cases, the surgery is the best option.

Did your doctor mention how deviated your septum is? The severity isn't necessarily a clue as to its impact on your life but I would still be interested in what he/she said about that.

Regarding tonsillectomy, I will let others comment on that since I am not as familiar with the issues for people your aga.

What concerns me though is the doctor saying she would move the throat muscles. Please find out what the procedure is because that sounds like it may be totally unnecessary. I am definitely for surgeries like septoplasty that can greatly improve the ability to use the machine although you still need to ask the right questions to make sure it is appropriate in your case.

But the surgeon sounds like she is talkng about a major surgery for sleep apnea which septoplasty isn't and that just seems to be totally inappropriate since so many other issues need to be addressed that haven't been. Sleep apnea surgery should never be a first step and it sound like that is what the doctor is talking about.

Finally, agree with the suggestions to post data to make sure your therapy is optimized. You still may find the septoplasty would be a viable option but then again, you may be able to optimize your therapy so well with the forum's help that you will decide it isn't necessary.

tiredandscared
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Re: URGENT: OSA surgery and quality of life

Post by tiredandscared » Fri Nov 27, 2015 4:11 am

I have a similar story. The sleep apnea has given me anxiety and rage issues. I can have fits of pure unbridled rage, which I never had before. At some points in the early days. My brain was in such a fog. I had to drag myself around, feeling retarded. That's gotten better as I've learned to manage this condition. Things will get better.

What's your AHI and your study results. CPAP should work. Even in extreme cases.

I'd try the cpap route first. Then see if that doesn't work out there is lots alternatives. I read that some American baseball player had mandibular advancement surgery and that seemed to have solved his problem.
Last edited by tiredandscared on Fri Nov 27, 2015 4:49 am, edited 1 time in total.

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49er
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Re: URGENT: OSA surgery and quality of life

Post by 49er » Fri Nov 27, 2015 4:37 am

tiredandscared wrote:I have a similar story. The sleep apnea has given me anxiety and rage issues. I can have fits of pure unbridled rage, which I never had before. At some points in the early days. My brain was in such a fog. I had to drag myself around, feeling retarded. That's gotten better as I've learned to manage this condition. Things will get better.

What's your AHI and your study results. CPAP should work. Even in extreme cases.

I'd try the cpap route first. Then see if that doesn't work out there is lots alternatives. I reas that some American baseball player had mandibular advancement surgery and that seemed to have solved his problems.
You're talking about Mike Napoli and if you are going by his batting average of .224 for 2015, maybe it wasn't a success.

All jokes aside, sleep apnea surgery should never be a first option and the good surgeons advise patients to try CPAP first. But depending on Giffard's situation, having a septoplasty and tonsillectomy may be viable surgeries to have so that it would make the cpap work better. Still, as with any surgery, lots of questions need to be asked as there aren't any guarantees and reputable surgeons don't make them.

And as I previously mentioned, she might find that by working with the forum to optimize her data assuming it isn't currently optimized that even the septoplasty and tonsillectomy wouldn't be necessary.

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Re: URGENT: OSA surgery and quality of life

Post by Greg Riddle » Fri Nov 27, 2015 6:24 am

I would recommend fixing the deviated septum and then give cpap another shot. Post some screen shots of your data and many here can help tune your machine to make it work. I have some problems caused by high pressure needs to treat my apnea. I have considered surgery but after getting details on the recovery I can't do it. I had a deviated septum and turbine reduction and it allows me top breathe through my nose now. Which makes the cpap easier to use

Giffard
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Re: URGENT: OSA surgery and quality of life

Post by Giffard » Fri Nov 27, 2015 10:40 pm

Thanks for the answers. I appreciate the help, but I think there's some confusion here about the point of the thread. I'm not doing the surgery out of the blue, and I'm not going to back out. It's been a long collaborative work with the doctor and me, and we both think the surgery is the best option. It's not, as some of you are thinking, a proper OSA surgery, but a surgery that will address some preexisting problems. I'm very grateful for the help, but I'm not choosing "the CPAP way", and I trust my doctor completely. She's not a general physician; she's specialized in snore and sleep apnea in the most relevant Brazilian university, and is a very considerate, smart person.

I think, however, that I accidently led people to think that my doctor isn't good by saying that she told me "the CPAP wouldn't work". Of course, those aren't her real words, rather a poor transcription of what I understood. I think she meant that the CPAP treatment would never reach its full potential if I didn't address my other issues first. Of course, she took into consideration that I, being relatively young, don't want to use CPAP for the rest of my life.

As for my CPAP data, I don't know how to get it.

I started the thread hoping that I would get some stories about similar surgeries, and to know if my issues could get better after the treatment... But I'm not imposing anything. Feel free to discuss whatever you want, but know that I'm not letting go of the surgery, and that I trust my doctor completely.

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Re: URGENT: OSA surgery and quality of life

Post by Heart Jumping » Fri Nov 27, 2015 11:06 pm

Giffard,

First off, congratulations on taking all the steps that you have to deal with the challenges you've faced. Sometimes people go into middle age, or even an entire lifetime without seeking out help for things such as depression. That you have done so at a young age is wonderful.

I know this isn't what you asked about, but the only input I can offer is to make sure you keep working on ALL aspects of your health, both physical and mental. Apnea can contribute to all sorts of physical and mental issues. Successful treatment may help with depression and anxiety, but it won't just wipe them away. I'm not assuming you think they will, I'm just saying to keep focusing on all aspects of your health.

Good luck on your surgery, I hope you'll report back once you've had it.

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kaiasgram
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Re: URGENT: OSA surgery and quality of life

Post by kaiasgram » Sat Nov 28, 2015 12:51 am

Giffard, no one (well almost no one) is trying to say that your doctor is not good -- only that, like all doctors, she is human. But it is absolutely your right to choose surgery and not first take advantage of the CPAP support we provide here.

I hope everything goes well for you.

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