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[Treatment] ENT says surgery only option
#21
RE: ENT says surgery only option
Yes, any SD card 2Gb or larger will work. Any brand will work. You're not required to use a Resmed brand. Also, using an SD card won't effect your MyAir operation.
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#22
RE: ENT says surgery only option
I think you need to explore getting a second opinion from a different ENT not associated with your current one. It will either satisfy your concerns as to whether this is a good approach for you or cause you to delay.

What concerns me though is his claim that you will not need the CPAP any longer. There is no way for him to know that in advance. My sister had a cpap before having surgery on deviated septum - the ENT told her that there is no way to know in advance whether she would still need a cpap after the surgery. It turned out that she did not (but 14 years later, it looks like she's going to need it again).
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#23
RE: ENT says surgery only option
Well, I could feel a little bit of that balloon feeling in my throat this morning, and my throat is irritated\red\dry, so I know I was breathing through my mouth. I shined a flashlight on to the mirror so that I could look at my own throat the soft palette hanging down on the top was moving in\out when I was breathing. The uvula did not move at all, but it is way larger than what I see on the Internet as normal.

I spoke with a person who the same ENT performed the same, plus throat and tongue scrapping, on and he said it helped out a lot and was able to get a self regulating CPAP machine afterwards that sensed when he would stop breathing and raise\lower the air pressure while he slept. Before the surgery they had it set to the max of 18 and the sleep doctor told him he should have at least a 21, but they didn't make them that high. He has his nose fixed too.

Anyway, now that I could see that the soft palette is what is causing me issues, I plan on going ahead with the surgery. I found a web site called something like sleep-doctor.com that shows the risks and what to expect for afterwards. I'm going to call the ENT office today though and ask if the soft palette will shrink when I lose the weight and might not have that done, but everything else seems like its good now.
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#24
RE: ENT says surgery only option
(05-28-2018, 09:31 PM)JohnJ789 Wrote:   <snip>
I'm still trying to figure out what the skin pushing in and out sometimes in my throat is, I seriously doubt it is the uvula that he keeps telling me it is. It feels like the 2 sides of my throat are like balloons and get pushed in and out when using the CPAP machine - only sometimes like when I recently had an allergy attack. I simply can't breath through my mouth when that happens, well I can if I use my breath to push and pull the air in \out and the skin or whatever is moving with the air. It is as if I had a piece of rubber covering my entire throat with a small hole in the middle. Could this be a swollen soft palette? I don't think the tonsils would move or maybe it could be them?

JohnJ, I think there are a few folks in the family who have experienced something like you have and suspect they might miss your question in the middle of the CPAP and other issues.  I suggest you post a separate question about this.

  <snip>
THANK YOU FOR ALL THE ADVISE! I have an appointment on 5/30 with a nutritionist to see if that will help me lose weight.
At least I feel better about the whole thing now- glad there was a place I could vent with people with similar issue.

That's GREAT!  I had to get help from a nutritionist some years back when I was diagnosed diabetic.  She/they got me straightened out, lost 100 pounds, my A1C got excellent, and I won the lottery.  Well, I din't win the lottery, but in every other way I came out a winner and I'm eager for you to experience the same success.
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#25
RE: ENT says surgery only option
(05-29-2018, 11:31 AM)JohnJ789 Wrote: Well, I could feel a little bit of that balloon feeling in my throat this morning, and my throat is irritated\red\dry, so I know I was breathing through my mouth. I shined a flashlight on to the mirror so that I could look at my own throat the soft palette hanging down on the top was moving in\out when I was breathing. The uvula did not move at all, but it is way larger than what I see on the Internet as normal.

I spoke with a person who the same ENT performed the same, plus throat and tongue scrapping, on and he said it helped out a lot and was able to get a self regulating CPAP machine afterwards that sensed when he would stop breathing and raise\lower the air pressure while he slept. Before the surgery they had it set to the max of 18 and the sleep doctor told him he should have at least a 21, but they didn't make them that high. He has his nose fixed too.

Anyway, now that I could see that the soft palette is what is causing me issues, I plan on going ahead with the surgery. I found a web site called something like sleep-doctor.com that shows the risks and what to expect for afterwards. I'm going to call the ENT office today though and ask if the soft palette will shrink when I lose the weight and might not have that done,  but everything else seems like its good now.

With regard to CPAP or bilevel you have been given some pretty bad advise and misinformation.  People can use CPAP for the duration of their lives. People in their 80s and 90s can benefit just as a younger person does.  CPAP has a pressure limit of 20, but bilevel machines that produce separate inhale (IPAP) and exhale (EPAP) pressures can go to 25 or 30.  People with higher pressure needs get more comfortable and better treatment using a bilevel machine because a lot of the respiratory effort is relieved by the difference between IPAP and EPAP (Pressure Support (PS). 

The reason we want to see your therapy data in Sleepyhead is because we can then advise you whether your treatment is going well or not, and what some solutions to that might be.  You have a very advanced auto CPAP machine set to a fixed pressure.  It is capable of providing variable pressure to meet your changing needs through the night, and it can also provide up to 3-cm of exhale pressure relief (EPR) which would make your therapy more comfortable.  We can help you, if you help us.

UPPP surgery with septoplasty has very variable results, and you should fully research this using an INTERNET SEARCH.  It may open your airway, but long-term results are less certain, and may make CPAP harder to use since it is harder to seal out your airway to use nasal therapy. Read the reviews and and judge for yourself.  CPAP or BPAP is generally the first best treatment, and you should fully explore it before deciding on surgery that may make it more uncomfortable or difficult to use.  Your doctor is pushing pretty hard for this and has given you WRONG information about PAP therapy to make surgery appear as a more suitable option.  A second opinion and good dose of skepticism is probably a healthy thing, and keep in mind the recovery from this surgery is long and painful.  If you want to explore optimizing CPAP, and using that to enable you to become more active, then we can help you to do that.  Download the free SleepyHead program and follow the links in my signature to organize and post charts.
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#26
RE: ENT says surgery only option
That's some very sound advice by Sleeprider... I couldn't agree more.
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#27
RE: ENT says surgery only option
I had this UPPPPPPPPP done, and no it did not help, it was not till afterwards did they say I had central sleep Apnea, which this procedure would not help with. I now have issues with easily gaging .Food would get into my nose from the back, which is often, or something goes down the wrong way and I gag on that. I cant hold my head below my waist without getting a headache (I am sure that that is related to this procedure).

So don't have the procedure.
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#28
RE: ENT says surgery only option
(05-28-2018, 12:31 AM)chill Wrote: 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.

I did and can vouch for it being extremely painful. Would never do it again, as it didn't work.  Even with tongue advancement, it didn't work. RUN AWAY I echo that thought.

agree with the septum and turbinates.
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#29
RE: ENT says surgery only option
You seem to be getting rushed into something that may bring many regrets afterward. Back away, check into a second Independent opinion and then try your best to know when to walk away, know when to run. It's your decision and your life, handle it with a heavy dose of caution.

Wishing you the best,

Stan
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It is what it is. But, it will be what you make it.
Pat Summitt
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#30
RE: ENT says surgery only option
When I looked into UPPP (it was over 10 yrs ago), the numbers I saw were:

It's considered a success if it drops your apneas by 50%. Even at 50% you could still have enough apneas to meet an OSA diagnosis.

About 50% of the time, after a year, the original apnea levels have returned.
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