URGENT: OSA surgery and quality of life

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

Post by kteague » Sat Nov 28, 2015 3:22 am

Giffard wrote: ...she took into consideration that I, being relatively young, don't want to use CPAP for the rest of my life...
Thanks for clarifying where you are with things. I didn't realize you were thinking of the surgery as an alternative to using CPAP. Maybe you and your doctor have done all due diligence before planning this surgery. I couldn't tell that based on the info you gave us. I interpreted your post as the doctor was doing this to help you with CPAP use. And I was concerned that you are going into a major surgery without a clear picture of the procedure. At any rate, I'll bow out as I've had none of those procedures. You might want to consider that what you'll find in a CPAP forum such as this are people who use CPAP even if they do have experience with those procedures. Those who no longer need CPAP are not likely to be here to give you a favorable report.Good luck with your planned course of action.

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

Post by 49er » Sat Nov 28, 2015 3:28 am

Giffard,

I agree with Kaiasgram but will take the risk of being more blunt. As I said to someone several years ago who said she completely trusted her doctor, doing that will seriously damage your health or get you killed. Let me explain.

When I was not much older than you several years ago, I completely trusted a doctor with an excellent reputation who said I had melanoma. Even when a relative strongly suggested I get a second opinion, I didn't see the need but finally did it because other family members were also suggesting it. Well, to make a long story short, I was misdiagnosed when the real diagnosis was juvenile melanoma which can be confused for melanoma under the microscope. Fortunately, I didn't suffer serious damage to my health but I could have.

Please understand that I am not suggesting you are going to have any negative outcomes from your surgery. And I am not suggesting that you should go to the other extreme and be paranoid about everything your doctor does as neither extreme is good. But the point of our responses was to make sure that you had thought about some issues that perhaps you were overlooking. If you feel you have covered them adequately, then I also wanted to wish you luck with your surgery.

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gregzeng
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Re: URGENT: OSA surgery and quality of life

Post by gregzeng » Sat Nov 28, 2015 4:19 am

Giffard wrote: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.
Apologies for the very many off-comments here that cannot understand your presenting problems.
PROBLEMS - PLURAL!

1) Since Childhood (pre-birth? and your birthweight, mother's pre-birth state-of-mind, etc?)
2) Already a user of CPAP at the time of surgical consultations (drugged?)
3) Emotional traumas with intimate partner, recently. Now medicated.
4) Serious, long term OSA
5) Detailed, complex medical examinations by many very good medical specialists
6) Financially ok for the moment (parents)
7) Young male (not old, not female)
Educated, intelligent (university, law school)
9) Anti-depressive medical prescription usage
10) Throat & tonsils !!
11) Envy with supposedly better of peers, friends
12) .... ?
13) .... ?
14) Studying Law (not the medical, psychological sciences)

With my very professional skills and insights of many types, both you and I know that it is very difficult for narrow-minded specialists, and old lay-people to try to understand your exact situation.

You have very well check both traditional and this non-traditional area for your CPAP issue. If I was again running my therapeutic clinics again (at my age & medical conditions!), we would like to confirm that you are not too upset about your childhood and teenage upbringing. This may cause doubts, uncertainty with any new or current relationships you have everyone, and everything in your life.

Perhaps the sex, etc of your main therapist(s) are similar to significant people in your recent or long-ago past, such as the one intimate breakdown that you mentioned.

If your male-self ever reaches the age of more than 50 years, you may be forced onto a life-long CPAP machine, whether you like it or not. At that time, all the people reading these messages now will be sending you email, SMS to you from "Heaven". Hopefully you will remember us, on your compulsory CPAP machines?

Finally, apologies for the poor layout of this site, which makes it impossible to easily & readily tell us your experiences with CPAP machinery. One day, the dinosaurs might be rejventated from hibernation?

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zoocrewphoto
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Re: URGENT: OSA surgery and quality of life

Post by zoocrewphoto » Sat Nov 28, 2015 4:30 am

gregzeng wrote:

With my very professional skills and insights of many types, both you and I know that it is very difficult for narrow-minded specialists, and old lay-people to try to understand your exact situation.

If you want people to believe you are highly educated and more capable than cpap users to answer these questions, then share your resume with your real name. Otherwise, you are just another anonymous person on the computer, no better than anybody else.

Finally, apologies for the poor layout of this site, which makes it impossible to easily & readily tell us your experiences with CPAP machinery. One day, the dinosaurs might be rejventated from hibernation?

If you do not like this forum, create your own. If you are going to post to the forum multiple times a day to promote yourself, then stop complaining about it. Either accept it the way it is, or go start your own. You are the only one having such a hard time with it. Most of us have been using it quite easily for years.

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musculus
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Re: URGENT: OSA surgery and quality of life

Post by musculus » Sat Nov 28, 2015 10:33 am

Giffard wrote: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)
Severe OSA at 19 means you definitely have a narrow upper airway. If your doctor is an expert in this area, then it might be fine (don't count on the surgery to 100% cure the OSA though).
I feel you should be more familiar with your condition (like AHI, RDI, etc) and possible treatment options (like dental appliance).

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archangle
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Re: URGENT: OSA surgery and quality of life

Post by archangle » Sat Nov 28, 2015 9:08 pm

Giffard, we need to know what CPAP machine you have. Tell us what it says on the top or front of your CPAP machine. The part where it has knobs and a display.

Tell us EVERYTHING it says. It may be something like "ResMed AutoSet....." Also, take out the water tank, and tell us what it says on the label on the bottom of the blower unit. It may include something like REF 560P.

Or look at the pictures of machines on CPAP.com and see if you can figure out which machine you have. If you have the right machine, you can look at your own data and get information on whether it's working.

If you have a good CPAP machine, it will record all kinds of data about your CPAP therapy, almost like having a sleep study every night.

One month is FAR too short a time to give up on CPAP. Even if you are now breathing "perfectly," some people take a while for their body and brain to get back to normal.

I'm also very skeptical of the doctor saying a deviated septum and tonsils will make CPAP not work. They can make it more difficult, but it rarely completely prevents CPAP from working.

My impression is that septoplasty and tonsillectomy are rarely complete cures for sleep apnea. However, it's possible you need those procedures anyway. I'm also skeptical about "moving your throat muscles" without knowing the name of the procedure.

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Re: URGENT: OSA surgery and quality of life

Post by archangle » Sat Nov 28, 2015 9:13 pm

musculus wrote:Severe OSA at 19 means you definitely have a narrow upper airway. If your doctor is an expert in this area, then it might be fine (don't count on the surgery to 100% cure the OSA though).
I feel you should be more familiar with your condition (like AHI, RDI, etc) and possible treatment options (like dental appliance).
A narrow airway can cause a high AHI, but not everyone with a high AHI has a narrow airway. Even a "fat" airway can collapse during sleep, or your tongue can fall back and block your airway.

Dental appliances have a really low success rate vs. CPAP.

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

Post by 49er » Sun Nov 29, 2015 1:07 am

archangle wrote:
musculus wrote:Severe OSA at 19 means you definitely have a narrow upper airway. If your doctor is an expert in this area, then it might be fine (don't count on the surgery to 100% cure the OSA though).
I feel you should be more familiar with your condition (like AHI, RDI, etc) and possible treatment options (like dental appliance).
A narrow airway can cause a high AHI, but not everyone with a high AHI has a narrow airway. Even a "fat" airway can collapse during sleep, or your tongue can fall back and block your airway.

Dental appliances have a really low success rate vs. CPAP.
Not true. As I have mentioned constantly on this board, according to the 2011 study that I provide a link to in my signature, adjustable rate appliances pretty much had a 75% success rate in getting the AHI below 5 for mild apnea, 60% fpr moderate, and 40% for severe. So while it might obviously not be the best choice for Giffard, it isn't the disaster you are making it out to be. Yes, I wish there were more up to date studies but this one was done in with about 800 plus participants and was quite detailed.

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Too tall
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Re: URGENT: OSA surgery and quality of life

Post by Too tall » Sun Nov 29, 2015 12:36 pm

Giffard,

I'm 11 days out from the surgery recommended to you. I had the UPPP which is the throat surgery to open the airway, remove tonsils, soft issue etc.. To be more specific I had the following:

uvulopalatopharyngoplasty (UPPP)
fessseptoplasty
smr of turbinates
somnoplasty
uppp
radio frequency ablation


I got a second opinion before the surgery and chose a doctor who does literally a thousand surgeries/ year. I'm not recovered and won't have another sleep study for a month or so to confirm success or failure. Since I do have CPAP and recording oximeter (noonin 2500A) I can tell you my apnea is completely gone when sleeping on my sides. I've confirmed that. However, i'm having issues in the supine position (sleeping on your back) which I"m hoping will go away as healing is complete. That would be 100% successful.

The UPPP is extremely painful recovery, I must tell you, but you are young and will handle it better me. They are very generous with the pain medicines but they are not good enough. You'll overnight in the hospital for observation to monitor for excessive bleeding. Just mark off about two weeks out of your life for recovery to the point of less pain when swallowing and probably a month for full recover.

There are plenty studies out there on the internet. Just google UPPP success rates or something like that. From what your doctor described, it's probably the right thing to do. The chance of getting completely free of the CPAP is maybe 40% from what I've read but the chance of lowering your AHI by half is very good.

As far as the nose work, that's a a no brainer IMO, If you want to be conservative, you could do the nose work first and see how you do on a CPAP. Or go for it and get it all over with.

Don't let this ruin your life, hang in there and learn everything you can about sleep studies, your particular issues etc... Take your health into your own hands and you'll make educated decisions.

It is important that you get the sleep apnea under control as serious organ damage, primarily the heart can result.

The surgery is pretty routine and most of the horror stories you read about are not realistic. Talk to your doctor about any concerns you have. As someone said, the people who had successful surgery and are off the CPAP are also off this forum.
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cant_sleep_in_nj
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Re: URGENT: OSA surgery and quality of life

Post by cant_sleep_in_nj » Sun Nov 29, 2015 8:14 pm

just an fyi, a good friend of mine who is a ENT would never recommend the Uvulopalatopharyngoplasty (UPPP) surgery as in his opinion it does not work. if it helps, its only slightly according to him and you will still need a cpap. Just thought id mention it.