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[Treatment] ENT says surgery only option
#1
Question 
This is a long post, but I wanted to give you as many details as possible for a better answer. There's 3 questions at the bottom in case you want to skip the details.

Background: I'm 48, body mass index of 39, have severe chronic OSA. Sleep study done in lab last October. Stopped breathing an average of 74 times an hour and they woke me several times when O2 dropped to 64. I already knew that I stopped breathing 15-60 seconds at a time from my wife telling me a decade ago when we were dating. I've always been a super loud snorer, even when I was a teenager and not 264lbs. I HAVE SEVERE seasonal and environmental allergies. If I cannot breath threw my nose (only left side - right side has deviated septum that doesn't let enough air threw) the CPAP works 100%. If I breath through my mouth it records 10-20 events per hour and I end up removing it due to waking up and not being able to breath enough. My doctor said my throat opening is more narrow than normal due to tonsils and the thing that hangs down is large and touches my tongue. The tonsils are normal size for my age though. My blood pressure has been about 145\89 for the past 8 years and a little lower before that. The BP does spike some days - it stayed around 166\109 5 days ago, but was back down to the norm the next morning.

CPAP- I LOVE IT! They told me almost every person who gets the new memory foam cushions are able to use the machines these days. The machine has a built in humidifier and the hose is heated. I have a full face mask and the small size works better than the medium they told me I had to use. I can breath easier with the CPAP on sometimes than I can when I'm awake, so yes I love using it. NOTE - They accidently sent me a NON memory foam AirFit  F20 cushion and I was not able to use it - cut into my nose, leaked, very uncomfortable.

The ENT doctor gave me 6 months to lose weight and said I had to lose 60lbs before having the surgery done. I tried very hard and would lose 2,3,4 pounds, but then gained it right back. I've just started to walk about a mile per day now that winter is over. He said he's not looking for more money, I need the surgery or I will die because the CPAP doesn't work breathing threw my mouth and I'm getting older and can't use it forever. He said it was a simple surgery, he's been doing them for 25 years, and when I asked about issue that I heard of he said they were nonsense. He told me to go ask the nurse for any other questions and to sign the paperwork. She answered the questions I had and I signed the surgery papers. I called back a week later with more questions and she told me she was just the receptionist and not a nurse. I told her the doctor told me she was a nurse and to ask her the questions. She said she had a BS degree in something medical related, but she was still just a receptionist.

SURGERY - scheduled for 6/5. Fix deviated septum on right nose by removing it, remove tissue in upper left nose that swells with allergies, remove the thing that hangs down in throat, pull out the tonsils, and expand the soft palette. I think he said he was going to remove some extra tissue from the right front sinus cavity that isn't supposed to be there, but showed in the cat scan.  He said I would be back to work in 1 week easily, nothing to worry about, and not to listen to other peoples stories. (one guy who has very swollen tonsils and is glad he had it done took 3-4 week to recover and a week before he could talk again, 3 other people had it done just to stop snoring and they choke on food and drinks and wish they never had it done, and my brother in law had it done because the CPAP pressure was not enough and after the surgery the CPAP works on the highest setting so he said he had to have it done, but wasn't happy about it)

NEW GUIDLINES - I just read the new January 2018 guidelines report that has a diagnosis chart to decided who should have surgery and the likelihood of it being effective. I don't understand how to interpret it completely though. It is located on  enttoday.com titled - Is UPPP Effective in Obstructive Sleep Apnea? 


I'm very nervous about the surgery, especially what I've learned about possible side effects and that it may not work. The ENT doctor told me I will no longer need the CPAP machine and will no longer snore. He never said anything about it not being effective, risks, or it might not work at all. He DID tell me I should lose weight to help the sleep apnea, but he didn't tell me it should be done first, just told me to try to lose 60lbs in 6 months.

I suddenly got ED around the same time the surgery was scheduled and my chest has been feeling tight since then when I think about it or get stressed about other things. I have a female PA and the topic was beyond her limits and she referred me to a urologist. I think it is just anxiety? I've been walking every day and walking quickly my pulse stays around 159 and goes back down to 80ish a couple of minutes after I finish the walk. I had a bad allergy attack a few weeks ago and got super tired suddenly, so I checked (finer pulse oximeter) my stats and the O2 was 82. I fought to stay awake for another hour and periodically checked and it was between 84-88. I went to bed and put the CPAP machine on, the O2 went up to 96 right away. I've never checked my O2 before during\after a bad allergy attack, but several years ago I had an allergy attack 10 minutes before a doctors appointment and my O2 was 59 and they thought the device was broken, but it worked on the assistant. She then put it back on me and it was 65, 67, 68, so she said we had to wait for it to get up to a certain level because everything lower was not allowed. She accepted the reading about 5 minutes later. My current doctor thinks my body sometimes over reacts to the allergies, sort of like a mild case of shock where my throat swells up a bit. The CPAP machine that night made it feel like I had to push and pull both sides of my throat forward and backward when breathing in and out. Its felt like this many times, but I always thought it was normal. The ENT doctor said it's all in my head and the feeling is just the uvula (whatever the thing hanging down in throat is called), and the feeling is harmless.


I feel like the ENT doctor didn't tell me everything I should have known, and he said the only risk is that I will die if I do not have it done, so I'm feeling like he left so much information out and I do not like that he told me his receptionist was a nurse and that she was answering my questions and having me sign the papers while I was there, but couldn't when I called.

My own doctor told me they will give me something to feel good and I wont know what happened until I wake up in recovery and that I should be back to work in 1 week, but wont be 100% for 2-3 weeks later. She said her husband had the same surgery and he still has to use the CPAP machine and there was no guarantees. She said her husband gets food going up his nose if he doesn't eat and swallow slowly.

I know I need my deviated septum fixed, and I know I cannot sleep on my back with the CPAP machine and never on my back without it, but I do not want to have the surgery and things not improve a great deal. I will be very upset if things get worst because of side effects.

What are your thoughts on the surgery for me? 
What level of the new UPPP effectiveness chart do I fit in I, II, or III?
Is it normal to wonder if I'm healthy enough to have (survive) the surgery?
Should I bring a print out of the chart and ask him to fill it in and where I stand?
Thank You
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#2
UPPP - run away.  I've not had it, but from the stories that I have read it is very painful and has unpleasant side effects and rarely provides the promised relief.  This is not an insignificant procedure.

Fixing the deviated septum and trimming your turbinates -- get this done.  I have done this as have many others here.  It makes it easier to use CPAP with a nasal masks or pillows and makes day time breathing so much better.  Recovery is a week of not so much fun and a week of kind of annoying but OK.  It was totally worth it, I'd do it again.
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#3
G'day John. Welcome to Apnea Board.

I haven't had this type of surgery, but I have read many patients here who have limited success after a painful recovery. (I'm referring to the whole box & dice recommended by your ENT, not the more limited procedure Chill described). In my view surgery is the last thing to try after more conservative methods have failed. However it does seem you have little faith in your surgeon and that's not a good way to approach a fairly serious operation. My (entirely layman's) view is that you should persist with CPAP and try to optimise that therapy before considering surgery. And seek a referral to a different ENT - you're entitled to a second opinion.

If you could post some SleepyHead daily charts, we could give you some pointers on optimising the therapy. Have a look at the details of SleepyHead here: http://www.apneaboard.com/wiki/index.php...SleepyHead
DeepBreathing
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#4
Hello John

Welcome to the forum. I agree with Chill and DB in that the ENT guy seems scalpel happy.

Like DB, I am a lay person with nasal surgery but am rather concerned that the ENT surgeon has advised you to lose weight but still gives appointment for surgery ahead of the possible results of weight loss. I know that is not easy but by most accounts, weight loss will provide some change to CPAP use but also other good effects totally. I know weight loss is a long road but there are many CPAP users here who will testify to correlating some degree of weight loss to many other beneficial effects.

Many CPAP users in this forum have had surgery for deviated septum and turbinate removal and perhaps they will chime in to relate their experiences and provide advice. Way I see it, you should take a step at a time and not rush headlong into the big surgery thing. it is entirely wrong of the ENT surgeon to suggest the surgery will rid you entirely of CPAP use. Again there are many here who will testify to CPAP pressure reduction after surgery but not entirely cure Apnea.
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#5
UPPP is nothing bad. People make it sound bad, those people all had their tonsils. The worst part of UPPP is tonsilectomy, there are thousands of people doing those and ending up very happy.

If you're worried, do it seperately. First the tonsils, then maybe some work under the tongue and soft palate, you dont have to do it altogether.

Most important however is to do your nose before doing your throat.

So My full suggestion:

1st surgery : nose
-----3 month break or until you can fully breathe
2nd surgery : tonsills
-----3 month break
3rd surgery : lingual tonsils, soft palate remodeling, maybe some work on the pharynx, whatever a sleep endoscopy finds needing to be removed.

After a full UPPP you will no longer be able to breathe through your mouth as easily as before because the palate flesh will be moved away from the back and towards to the front to ease nose breathing.

My biggest mistake was doing UPPP before doing my nose. I couldn't breathe through my nose since forever and then after UPPP I was choking on my swollen palate until the swelling went away.

I had the C) modified UPPP (link) where the soft palate isn't cut out, I had very minimal water going to my nose while swallowing for a few weeks, it went away.
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#6
Hi JohnJ789 and welcome to the forum! Glad you found us, you could benefit from all the opinions of others who have had similar experiences to yours. I'm sure in time, you'll get more responses from folks like that. Sure sounds to me like you should get a second opinion from a different ENT.

In the meantime, DeepBreathing brings up an excellent point about downloading and using SleepyHead software. It will allow those experienced users to take a look at and comment on your xPAP therapy and provide suggestions for improvement.

Best of luck and keep us posted!
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#7
I would avoid UPPP at all costs, having had this procedure done its painful and very little reward. I would look for a second opinion.

Losing weight, (i know its tough) may clear up much of your problems. My wife just had gastric sleeve and has to keep adjusting cpap to lower level.

I have recived Inspire treatment and love it.
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#8
Again the pain from UPPP comes from tonsil removal, the rest of the tissue gives little to no pain.
Unfortunately Inspire isn't always available.

I had UPPP and despite the pain from tonsilectomy I  can wholeheartedly recommend it, after having fixed your nose first.
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#9
My tonsils were removed, at age 6, UPPP age 29, there was plenty of pain and discomfort, to each there own.
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#10
I would suggest perhaps a second opinion if possible? Particularly if you are not comfortable dealing with this surgeon.
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