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[Treatment] ENT says surgery only option
#11
RE: ENT says surgery only option
Hi JohnJ789 and welcome to the family fun forum!

I'd like to speak to something you din' ask: confidence in a professional who pressures a patient to have a particular procedure; scoffs at a patient's fears; scoffs at anecdotes related to the procedure(s).  I had a urologist who seems to be the twin brother of your ENT  — though your ENT might be my former urologist; I haven't had any contact with him for about 5 years (though I supposedly should have died of prostate cancer before now); I was put off by the behavior you describe, and resolved I'd rather die than be bullied/bamboozled into a procedure that sounds similarly like the effects you've been told.  I must confess that my former urologist never refereed me to ask advice/encouragement from someone not qualified to speak to issues with the same level of expertise that he had.

It seems you've done everything possible with your CPAP fitting and adjustment and in the short term you need to have some of the gurus advise on tweaking your machine settings.  To facilitate that, follow the recommendations and post some SleepyHead charts.

And you don't show your location in your profile but I'm certain you must have access to at least one other ENT; I urge you to get a second opinion.

Okay, to your questions:
1. You've made it clear that you need surgery.  However, I can't say you need "the" surgery; frankly, my limited knowledge only lets me agree that you need much less cutting than your ENT is so eager to do.

2. Sorry, I can't speak to this on any level; I'm clueless. <duh>

3. No, it isn't normal — you're almost as big a sissy as me! Dielaughing 
Just kidding; you're showing not only a healthy level of fear, but also good stewardship; keep on keepin' on!

4. Well, if you don't cancel the 6/6 appointment and speak to him again, yes, I think it's a good idea to bring a printed copy and ask him to mark (and initial) your level.  (But I'm hoping it never comes to that — I suspect that your ENT has persuaded you that you need someone who isn't quite so, let's say, zealous.)

Now, where's those SleepyHead charts?
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#12
RE: ENT says surgery only option
(05-28-2018, 11:22 AM)Marillion Wrote: I would suggest perhaps a second opinion if possible?  Particularly if you are not comfortable dealing with this surgeon.
this.

No way should you take one docs word on something like this, especially since you seem sceptical of his advice.
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#13
RE: ENT says surgery only option
Second opinion!
I've had the UPPP surgery and deviated septum straightened along with turbinates reduced.
The UPPP was NOT 100% successful...the relief lasted about 6 to 9 months post surgery. The 6 month after surgery sleep study showed some success, but I still had apnea. Side effects are annoying at the very least - nasal reflux (food/liquid coming out the nose while eating drinking), throat VERY sensitive to spicy food 15 years post surgery. I still need a CPAP to relieve the apnea - also NOT a 100% cure but WAY better than dying or slow brain damage!
The best thing that I've had done is the septoplasty, my right nostril was about 90% blocked and left was about 40% blocked by the deviation and the turbinates...it's one year since that particular surgery and it's fantastic not being a mouth breather anymore! I'm also on a different allergy treatment regimen which helps alot too.

So, bottom line - don't rule out the surgery on our say so, but get a second opinion from another ENT. This one you are talking about seems like an ass that just wants you to have surgery for surgery's sake. IT WILL NOT CURE YOUR APNEA! If anyone says it will then they are lying or ignorant or both.
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#14
RE: ENT says surgery only option
1. Get a second opinion on the surgery.  The UPPP is liable to change the way your voice sounds. Think "Mickey Mouse". I have a lot of experience with ENT patients (I was an OR nurse working with ear, nose and throat patients for decades), I finally figured out that I had two obstructions (floppy palate and lower jaw/tongue collapse) and that an oral mask would work for me.

2. Try just an oral mask; Oracle 452 Oral CPAP Mask. After several years of getting bad advice from my doctor, DME supplier and sleep techs I finally decided to do my own research.  This is what I have discovered. About 50% of patients can’t use a nose or nose/mouth mask.  The problem is often that the air gets pushed in from the mask thru the nose, but then comes out the mouth (open mouth sleeper), often with a lot of mask leaks.  This is because the soft palate in some people is floppy at the back of their throats.  As long as they remain upright, the baggy palate remains down towards the tongue and passage to the nasal cavity remains open.  But upon reclining, the palate falls towards the back of the throat and acts like a flap valve. Air comes in from the nose, but then the palate blocks air flow out thru the nose and forces the mouth open when sleeping.
 
If you have this condition you need to use a mouth mask called the Oracle 452 Oral CPAP Mask.  It looks and works like a SCUBA mouth piece.  There are two silicone ovals, one covers the outer lips and one covers the inner lips.  It is kind of hard to describe.  Just look for a YouTube video.  These two supports keep the mouth and lips gently closed and sealed around the mouth to prevent leaks. The mask has a very simple and comfortable strap that fits around the back of the neck.  I have not needed to keep it tight, just not excessively loose.
 
You must use a humidified system because your mouth will dry out without it.  I usually run the humidifier on the high side.  Even so, sometimes my mouth dries out.  So I keep a squeeze bottle of water at the bedside.  If my mouth dries out a night, I can easily dislodge the mask from my mouth without removing it entirely, take a swig of water to moisten my mouth, put the mask back in and I am back to sleep in less than a minute.
 
A couple of other tricks.  Use the nose plugs (it comes with sm, med, lg sizes).  Air can sometimes slip past the floppy palate and come out the nose.  When this occurs, the nose plugs can get blown out when you are sleeping.  If you awaken, it is hard to find the plugs in your sheets somewhere.  So I tie a 12 inch piece of string to the bridge of the nose plugs and the other end of the string to the connection between the neck strap and the mask.  If I blow the plugs out I can easily find the string near my cheek, retrieve the plugs and put them back in without having to turn on the light or even removing my mouth piece.
 
The Oracle has a pressure relief valve near the connection to the air hose.  During humidification, water will condensate on this valve and drip on me, which wakes me up.  So I wrap masking tape around it to seal it up to keep it from leaking.  There is a second, filtered area nearer to the mask that allows you to exhale. So blocking this valve does not present a problem.
 
With a humidified system, I found that condensation will collect in the air hose if it droops between you and the machine.  When water accumulates in that low area, it often gurgles loudly and wakes me up.  So I tent the air hose over the head of my bed so the condensate either drips back to the machine or drips towards me.  This eliminates the loud gurgling.
 
3. I started wearing a soft cervical collar. They can be purchased on-line for about $15 without a prescription. This does two things. First it keeps my mouth gently closed while sleeping. I tried using a chin strap but found it uncomfortable and it also forced my jaw shut which causes me to grind my teeth and bite down hard on the mouth piece which is not necessary to keep the mask in.  So I started using a soft cervical collar.  Secondly, it keeps my head in the sniffing position which is the optimum position to maintain an open airway.  Many people tuck their chins after they fall asleep.  This tends to occlude the airway (especially if you have big tonsils) and makes the CPAP less effective.  Try this as a test.  Close your mouth and tip your head up slightly like you are ‘sniffing’ home baked cookies.  Then take a large breath through your nose.  Next tip your chin down close to your chest (like in a fetal position that many sleepers assume after losing consciousness).  Take another deep breath thru your nose.  You will probably notice that it is harder to suck the air in because your airway has been partially occluded. Chin straps may keep your mouth closed, but they don’t stop your chin from tucking into a fetal position which partially obstructs the airway. This is another reason people fail their CPAP treatments.
 
Most doctors, DME suppliers and sleep techs have never heard of the Oracle mask so you are going to have to educate them.  They are not expensive; about $70.  So if you are a mouth breather unsuccessfully using CPAP or considering surgery, try the Oracle and soft cervical collar.  What do you have to lose?
 
Disclaimer:  I do not work for Fisher & Paykel and have received no money or consideration for writing this.  I am an operating room RN, so I know a little bit about proper airway maintenance.

I have been able to overcome my sleep apnea doing the things I describe above.  I am constantly trying to lose weight (I weigh 320 p), but exercise is difficult due to degenerative spinal disease (too many hours standing on my feet in the OR). Even so these apnea problems can be overcome by even fat people. My AHI is 1.5.  Less than 5 is normal.

Good luck.

PS I had a nasal septal reconstruction (NSR) many years ago (turbinate surgery).  It was primarily to relieve nasal congestion because I have chronic sinusitis.  But it had no effect on my sleep apnea. If you are dealing with a lot of nasal congestion have the NSR, but don't expect it to help with sleep apnea.
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#15
RE: ENT says surgery only option
I try to keep an open mind about phenomena and about people with whom I interact.  Playing devil's advocate, and dealing only with the scheduled surgery, this may be something he has found helps to keep a patient focused and motivated to attain the requisite status (prescribed weight loss) prior to surgery.  For more, see "Goal Setting Theory," one of many theories for motivation (one of my areas of study and teaching).

I learned, late in life, to look and to ask around.  You'd think I would have generalized from my long military career in armour and reconnaissance where I was told repeatedly, early, that "Time spent on recce is seldom wasted."  Recce, pronounced "WRECK-ee", being the short form for reconnaissance.  Get to know the terrain.  Find the potential defiles and other obstacles to your moving about purposefully on that terrain.  Learn about all potential assets and dangers.  Make an informed decision (where have we heard that before?).

So, why did I learn, or have to relearn, the lesson late in life, and from whom?  From my father, and it's germane in your case for the same reason: you learn a comparative basis for achieving your aims.  He needed a rear bumper replaced on his pickup truck.  I asked a local jobber garage for an estimate and it came to $350 for both the part and the labour.  I thought that was pretty good.  My father called the local car dealer and found the part for much less, even though it was from the dealer.  The job, with labour, was almost $100 cheaper.  Why didn't I find that out myself?!?!?  (I ask myself that question. He was too kind, and respectful of my intelligence, to ask it of me.)

This is a very long way of adding my voice to those who say you MUST not waste your precious resources on one 'estimate'.  Do more recce!!  Ask around.  At the very least you will find you have a different appraisal of your circumstances and where to go from here, or you will have mostly an agreement by the second surgeon you consult.  But, you'll never know unless you ask that second person.  Be fully informed.

If it matters, I do appreciate the advice to tackle this one step/surgery at a time.  It makes sense to be less invasive and reconstructive, and to find out for yourself if/what will do the most good at one time.
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#16
RE: ENT says surgery only option
As a layman with over 30 years of CPAP/BIPAP  usage  my instinct is to have further consultations with other sleep medicine doctors. I have had septum and turbinate reduction surgeries and benefitted from each of  them, but I had no suggestion that either would eliminate the need for XPAP. Virtually all the patients that I know who had UPP, jaw shifting etc. are  uniformly negative regarding the experience and results. XPAP is a bit troublesome, but there is no pain, no long-term damage to the body and is certainly not an irreversible treatment. 

TheDuke
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#17
RE: ENT says surgery only option
Hi John, Welcome to the ApneaBoard  Forum

On a positive note I know of at least two people that say it worked for them.
On a negative note I know a lot more that siad they would never have had it done had they know the pain and the poor results.
I know quite a few that have said that after the awful pain went away after what appeared ages, they appeared to be better, not perfect, but better, then after a couple of years they would come back and say they are almost back to where they were before they had it done.
They said the pain was not worth it and after a while the results were not much better than they were at the start.

So at the end of the day it is up to you, but if it were me I would be running as hard as I could and not look back.

As someone said, if you try everything else, then it might be worth a try, though I would try anything else but that operation.
It is your choice, but I think the surgeon is on a get rich quick kick.

Get a second opinion and then ask a sleep doctor what he thinks.
Don't just take the word of one surgeon.
Go see a Sleep Doctor and see what they can offer you first before you go under the knife.
>^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^<
I am NOT a doctor.  I try to help, but do not take what I say as medical advice.

I am just a long term user of c.p.a.p. and therefore I have some experience in using these machines and equipment.

However, I am NOT an expert, so advice given should be taken as given in good faith only and NOT medical advice.

Every journey, however large or small starts with the first step.   Coffee
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#18
RE: ENT says surgery only option
(05-27-2018, 11:51 PM)JohnJ789 Wrote: 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.

Just a couple of points to add to the other folks' recommendations to give CPAP more of a try:

It is quite possible to conquer mouth-breathing using CPAP, either by learning a new habit (only nose-breathing while the mask is on) or by using a chin strap and/or soft cervical collar. Many, many CPAP users have no serious problems with that, and the machine basically works miracles.

Second, sure you can use it forever. Why not? There's no reason not to. All of us CPAPians plan on doing that (for small values of "forever" varying from one person to another depending on age). CPAP doesn't cure anything; it simply makes it possible for you to breathe properly. It's analogous to eyeglasses: they don't cure myopia, but they make it possible to see things at a distance.

I agree with what TheDuke said: "XPAP is a bit troublesome, but there is no pain, no long-term damage to the body and is certainly not an irreversible treatment." It also requires no drugs whatsoever and is non-invasive. Those are all huge advantages. ("Gets rid o' your gamblin' debts ... cleans lipstick off your collar ...")
"I wanted to be a Boy Scout, but I had all the wrong qualities.  They were looking for kids who were trustworthy, loyal, helpful, friendly, courteous, kind, obedient, cheerful, thrifty, brave, clean, and reverent.  Whereas I tended to be devious, fickle, obstructive, hostile, rude, mean, defiant, glum, extravagant, cowardly, dirty, and sacrilegious."  (George Carlin)
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#19
RE: ENT says surgery only option
Thanks for the info. Yeah, I like to give as many details as possible because you never know who might need the information in the future.

Logically, I do think I should get my nose done 1st. I've always wished I could breath in my nose and out my mouth growing up, but never was able to get enough air in.
We only have 1 ENT for like 200 miles in this state, but there's better doctors in the next state and it's only 1.5 hours to get there. I will get a 2nd opinion.
I will call the ENT tomorrow and ask to meet with him and suggest only having the nose done on 6\5. He had mentioned that I'm too old (48) to have 2 or 3 different surgeries and had to get them done all at once, which he said is better for both him and the patient.

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?

Oh, I had all sorts of health issues for about 8 months before 2 doctors gave up and told me I had anxiety and the chest pains, the drastic blood pressure and heart rate changes, blurry\double\vision changes daily and noticeable changes each week where all in my head because the physical test were normal. The ER told me I was using drugs or had a lot of caffeine one morning because my heart rate wouldn't go below 120 and was throwing a lot of PVC's with bad knuckle pain in my left hand each time it threw large PVC's. I Googled my symptoms and noticed Sleep Apnea was in most of them. I then remember at the ER one morning the nurse came in ticked off about the machine beeping all the time from the "Apnea" alarm going off and disconnected it. I then asked my doctor if I could get a sleep study done... After using the CPAP I got better quickly over 2-3 months, well except for my memory. The cardiologist told me that my heart is tired from not resting at night and my brain\heart just about have given up trying to keep me alive while sleeping due to the severity and how long I've had it. That was 2 cardiologist and they both said the same thing, that our brain\body adapts to what it thinks we want, so they think I want to stop breathing while sleeping.

Yeah, my memory also detreated over the past year - Here's another thing I forgot to mention - The sleep doctor gave me 4 options in October. 1) Ensure I never sleep on my back by sewing 4 tennis balls to the back of a t-shirt and always try to sleep on left side, 2) use a CPAP machine, 3) have surgery, or 4) mouth\dental guard. They told me I had to use a CPAP due to the severity unless I wanted to risk ending up on my back while sleeping.

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.
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#20
RE: ENT says surgery only option
For the Sleepyhead data - Do I just have to buy an SD card and put it into my CPAP machine? I think there's a place to insert one. The data currently is auto transferred to https://myair.resmed.com/
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