ENT Office Visit

Titrator · Post by **Titrator** » Mon Jul 23, 2007 3:42 pm

Hi All,

After 6 years on the hose, with 100% compliance, I finally saw a really good ENT. He looked into my throat and saw a few things that needed to be corrected. My tonsils are very large. My uvula is long, and my soft palate is loose. He also noticed that my turbinates are smaller than he would like to see them. He asked me if I breathe through my mouth during the day while awake... I said yes, and he said... "I thought so".

Looks like I am moving toward having surgery. He thinks that there is an 85% chance of being able to get off cpap, but he mentioned seven days of the worst sore throat that I could imagine. I am not thrilled about that part, but I would like to improve my situation.

I have a baseline sleep study on Wednesday to see just how bad my apnea is after 120lb of weight loss.

Anyone want to share sucess or horror stories?

Thanks,

Ted the Titrator

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CPAPopedia Keywords Contained In This Post (Click For Definition): hose, CPAP

Snoredog · Post by **Snoredog** » Mon Jul 23, 2007 3:52 pm

hehehe you are dreaming Ted (and you already know this)

Just keep in mind once he removes your Uvula and part of your soft palate you will no longer be able to maintain a seal between the soft palate and the base of the tongue.

That means if IT doesn't give you an 85% reduction on SDB events you will have to go with a Full Face only mask as you won't be able to maintain that seal. It will be like blowing bubbles under water.

I would go ahead with any turbinate reduction or nasal surgery, I had that done and it was no big deal, it does allow you to breathe.

Tonsils maybe but I wouldn't let them touch my Uvula any more than reducing it by about 50%. All that surgery does is make a larger hole for the tongue to land into.

TXKajun · Post by **TXKajun** » Mon Jul 23, 2007 4:20 pm

Ted, major congratulations on your 120 lb weight management! WOWZERS! Hopefully it'll show big time on your sleep test Wednesday. Good luck!

I can't really comment knowledgeably on any of the rest of the stuff. Just remember, once they take it out, it's gone forever! They can't put it back! LOL

Kajun

Slinky · Post by **Slinky** » Mon Jul 23, 2007 4:27 pm

Wow! Congratulations! 120 lbs weight loss. That is so impressive!

dllfo · Post by **dllfo** » Mon Jul 23, 2007 4:30 pm

Great news about your weight loss Ted, be VERY proud.

I don't gain weight unless I am on Prednisone a week or so, then I can really put it on (30 pounds in about a month two years ago.) But my wife has been on a doctor supervised diet for almost a year and has lost close to 40 pounds.

I love her heavy or slender, but her younger brother already has Diabetes, type II I think. He takes shots daily.

That is just super Ted, I wish you all the luck in getting off XPAP, but if you don't, you know where we are

Best wishes with the surgery, but Snoredog has a point about problems if it fails.

rested gal · Post by **rested gal** » Mon Jul 23, 2007 5:06 pm

Big congrats on the weight loss, Ted.

Now, just how much reading do ya wanna do?

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Billinseattle is someone who has done a lot of research on all the surgeries and has had a lot of them. Below is his reply to someone on TAS who was also planning a lot of surgeries -- tonsils, uvula, soft palate, tubinates.....and had asked for comments.

Billinseattle wrote:

I've had all of these surgeries...and then some. None of these freed me from PAP devices. The MMA/GA is what worked for me (and what works in 96% of people in studies)...I'm OSA-free...but it is a major, big deal.

Of the procedures listed, the nasal work (usually inferior turbinatectomy and septoplasty) is usually well tolerated, has a relatively short (1-2) week recovery period...and actually does what it is supposed to...help you use CPAP devices and lower the pressure required.

I wholly recommend the nasal surgery. You can't use CPAP without having a free nasal airway.

Tonsillectomy is probably a good deal...but this is a your-mileage-may-vary situation. It works very well in children who have OSA. However, as adults, it is less clear. Our airways morph as adults and the value of having tonsils out is less clear than in children. As adults, a tonsillectomy also is associated with more pain and is less well tolerated than in kids. The one thing that it will do is remove large obstructing tonsils as a variable...sooner or later they should be removed just to clarify the fact that you've done all you can to address the issue (at that point of potential obstruction).

So a tonsillectomy gets a qualified recommendation.

Now, there's the UPPP. That is a combination of a uvula removal or flap, trimming the palate , and tucking up the posterior walls of the pharynx.

The UPPP has many issues associated with it. First, in the vast majority of people, IT DOES NOT CURE OSA. The studies out there are old, not based on scientific method (using post-op subjective interviews instead of sleep lab data), and have at best a 30-50% "improvement" in post-op OSA symptoms.

Second, there is a high relapse rate in most people with a short period of time. If it did work in the first place, as you age your oro-pharynx becomes more lax (or if you gain weight, the neck compresses the airway)...and the few milimeters of new airway is re-collapsed.

Third, the UPPP is associated with pain and discomfort (that varies from person to person) for 1-3 weeks. Because of raw surgical sites in the back of the throat , swallowing anything (including your own saliva) is painful post-op.

Fourth, the UPPP has a few annoying side-effects that happen in a fair number of people. These are not "complications" (that may include bleeding, infection, etc...)...these are side-effects that commonly occur with the surgery. These may include a persistent foreign body sensation in the back of the throat, liquid nasal regurgitation, and an inability to seal some PAP devices to effictively use them.

So, with respect to the UPPP, my perspective is that the risk-benefit ratio is BAD. The risks (lack of a cure, relapse, pain, side-effects) do not justify the potential benefits (the low cure rate associated with this procedure).

To be fair, there are a minority of patients who can derive benefit from the UPPP...and you might be one of them. The folks that have improvement seldom stick around to post of their success...so we don't see them post here to often. And, the UPPP may provide some help in decreasing the obstruction in your airway. It is just not likely to work as an isolated procedure (in other words, an MMA cured me, but I'm not certain if the previous surgeries didn't contribute to the cure as well).

The primary reason why the UPPP doesn't work is that it doesn't address the base of the tongue obstruction that most of us have. This problem accounts for the obstruction in a majority of people with OSA (not the poor uvula hanging there in the breeze). Tongue obstruction is exactly why dental devices (TAP device) and the MMA/GA do work...they both draw the tongue forward and down, freeing up the airway.

The only two procedures that work well enough to constitute a "cure" for OSA (having better than 95% cure rates in the medical literature) are a tracheotomy (hole in the windpipe) and an MMA/GA (moving the upper and lower jaws and tongue base foraward). Both are extreme procedures. The permanent trach has lifelong issues, the MMA/GA has a long (2-3month) recovery period.

So, I'd try the nasal procedures. I'd consider the tonsillectomy. I'd look long and hard at the UPPP...and might decline it altogether. I'd research and try a dental device. Failing everything else...and still looking for a total fix, I'd research the MMA/GA procedure as a last extreme resort.

Best of luck,

Bill

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Interesting Pro and Con articles by top "sleep" doctors:

Upper Airway Surgery Does Have a Major Role in the Treatment of Obstructive Sleep Apnea by Nelson Powell MD

Upper Airway Surgery Does Not Have a Major Role in the Treatment of Obstructive Sleep Apnea by Barbara Phillips MD

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UPPP Ohio Sleep Medicine Institue 10% success rate?

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viewtopic.php?t=11788
Aug 01, 2006 subject: UPP Surgery

A guest posted:

Following are some snips of posts from members here and TAS who have had UPPP:

nodding off wrote:
Welcome to the forum! I had UPPP and Deviated septum surgery in 1995. 6 months later had a cpap. I'm also claustrophobic. There are masks out there now that you won't feel closed in on while wearing. It's worth a try, because this treatment really makes you feel better. If I had it to do all over again I would still have the nose done (I could only breathe using 1 nostril) but would not have had the UPPP. Good luck in your treatment, whichever path you choose.

wakedead wrote:
Hopefully before my insurance company commits to buying this machine I can convince them to reimburse me for an apap. Looking forward to a good nites sleep again since my UPPP did not work out that well. Thanks again for all the posts it is helpful to know that there is a place to go for good advice from people who have been there and done that.

otispk wrote:
I've had both and neither were lasting. I had the UPPP 20 years ago and it was moderately effective for a year or so. I recntly had three sessions of somnoplasty and I'm back to where I started. CPAP is the only thing that I found that works.

One Tired Moose wrote:
A bit of history. I was first diagnosed about 10 yrs ago and opted for UPPP surgery (uvulopalatopharynogoplasty) because after my first experience with CPAP in my sleep study I didn't think I could deal with it every night. Well, what they tell you before the surgery and what happens is like night and day. Their description of the surgery "It will be like the worst sore throat you have had." Actual experience, weeks of extreme pain, months to feel better in the throat and over a year before my throat felt normal. The good part was a 35 lb weight loss because I couldn't eat. The surgery (or maybe the weight loss or maybe both) worked for about a year. 1 1/2 years later I was back to exhaustion and depression due to poor sleep. Another sleep study and I started CPAP.

Gipper wrote:
I agree on NOT having the UPPP. I had it done about 7 years ago and wish I never did. I would try the Pillars or Somnoplasty over UPPP.
Gip

cinderz71 wrote:
I had the UPPP surgery several years ago and for almost a year following surgery I slept restfully. Now the osa is back.

MARTY wrote:
I have had the UPPP and really couldn't tell a difference afterwards. The treatments for Sleep Apena have various results for different people based on my reading and participation in this forum. If I were to start my journey in trying to cure my Sleep Apena again I would have started at Stanford to begin with or would have consulted with a Doctor that could tell me actually what the cause is for my sleep apena. I feel confident with the staff at Stanford who in a matter of minutes while being examined told me that it was my tongue causing my sleep apena not my UPPP. UPPP in my opinion for me was a waste of time and whole lot of pain for no results.

another_charlie wrote:
Out of frustration, scheduled surgery. UPPP, turbinat reduction, and septoplasty. For what it's worth, it's as painful and miserable of a process as you've all likely been told about. I knew it was going to be painful and knew it had a less than stellar chance of success, but I wanted to roll the dice to see if I could untether myself from the need for a machine/mask. This was early April 2006.

Recently had a new sleep study and found that the surgery was not successful (altho I was told that there may still be some healing to do).

josh wrote:
A plastic surgeon and orthodontist both agree that I am a good candidate to have both my upper and lower jaw advanced. I have already had the UPPP with deviated septum done, to no avail.

meister wrote:
My sister had the UPPP surgery and it didn't do a thing for her, other than make her talk funny, and whatever she drank come out her nostrils.

snork1 wrote:
My friend who swore by UPPP and had his done by one of the best surgeons around, now has his apnea back full bore, after less than a decade, AND has all the swallowing issues associated with UPPP.

MrSleepy wrote:
It's been about 2 months or so and now I have my Resperonics Bi-PAP-Auto. My pressure setting as prescribed from my doctor is 17/11.
I went from not being able to tolerate a CPAP from 10 years ago to falling asleep in about 20 min or less the past for nights.
Another little tid bit of info I had the UPPP done and all the other nasal goodies that goes along with it. This was in 1997.

nodding off wrote:
Beware of UPPP surgery. Lots and lots of pain, very few success stories. My untreated AHI 1 year after surgery was 94, and I still snored.

Mxboost wrote:
Well ya'll, unfortunately, I had the UPPP surgery a year ago last January. I thought it helped tremendously, until I had another sleep study, and the results were worse.

Barb (Seattle) wrote:
I was going to say too, about the snoring...I've definitely stopped snoring with my UP3...but, I still have severe apnea, so someone can be fooled if they think if they aren't snoring, they don't have apnea any more.

There is no way to know how effective the surgery has been other than periodic followup sleep studies. The results are sure disappointing.

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Clickable LINKS to surgery, turbinates, Pillar, TAP experiences
viewtopic.php?t=2836

UPPP discussions are in the topics at bottom third of the page. Check out posts by billinseattle in particular.

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Titrator · Post by **Titrator** » Mon Jul 23, 2007 5:31 pm

Even if I have some sort of surgery and it is successful, I am not going anywhere. I helped start this forum and I plan to be with it for a very long time.

I enjoy sharing my experiences with all the folks here. I strongly believe in cpap, it has changed my life. I will always be an advocate for the sleepless...

Ted

Snoredog · Post by **Snoredog** » Mon Jul 23, 2007 6:44 pm

if nasal surgery could lower your pressure requirement Ted that would be good, think you used to be at 13 cm on your 418? I don't think any cutting in your throat will help you any, but get your nose fixed so you can breathe, that should lower your pressure right there.

You were right, that A-Flex is effortless to breathe against

Titrator · Post by **Titrator** » Mon Jul 23, 2007 6:47 pm

My pressure was as high at 20 at one time and now it is at 10cm. Snoredog, that 418P was a long, long time ago. I hardly even remember back that far.. Must be missing a few more brain cells...

Ted

CarrieS · Post by **CarrieS** » Mon Jul 23, 2007 6:58 pm

Wow congrats on the weight loss what was your method? Thats fabulous! Good luck on whatever you side to do with surgery _ I know nothing about it so sorry not much input there.

Titrator · Post by **Titrator** » Mon Jul 23, 2007 7:03 pm

Hi Carrie,

I did it the old fashion way... I had bariatric surgery... lol.... My stomach is now the size of a golf ball, and there is a penalty for over eating and eating the wrong foods... I wouldn't have it any other way. Before I was like a dog, throw me anything off the table and I would eat it. Not anymore....

Ted

ilenel · Post by **ilenel** » Mon Jul 23, 2007 7:28 pm

I had the surgery done 7years ago. I never did another sleep study after the surgery. THey worked on my nose, removed the uvula,removed the tonsils, and opened the palate. Do not let them remove the uvula. WHen you eat or swallow it helps you not choke. The pain is awful and I am back on the hose. It worked for a few years and my neurologist says the surgery is not successful . I will say I lived on crushed Darvocet in pudding for about 1 week due to the sore throat pain from the throat surgery...My recommendation is due your research...

kteague · Post by **kteague** » Mon Jul 23, 2007 10:18 pm

My last sleep doctor's visit my new doc commented about my long uvula and narrow throat, but never went so far as to suggest surgery. I've had 3 people I know very well have surgery and they all wish they'd skipped the uvula removal portion due to swallowing problems and difficulty managing sinus drainage. Oh, and all 3 are back to struggling with excessive daytime sleepiness and are planning to go back for sleep studies.

Please let us know how your sleep study turns out. Congrats on helping your health with the weight loss. I'm both jealous and happy for you!

Kathy

bdp522 · Post by **bdp522** » Tue Jul 24, 2007 5:50 am

Ted, you're a smart fella, do the research, think about what you've learned, and make your best decision. Best of luck to you whatever you decide! If you opt for the surgery and it turns out you don't need xpap any more GREAT! If it turns out you do...you gave it your best shot! If you opt to not have the surgery, thats OK too.

I am not going anywhere. I helped start this forum and I plan to be with it for a very long time.

Promise?

Brenda

CowboyDave · Post by **CowboyDave** » Tue Jul 24, 2007 11:01 am

The UPPP is very painful. The worst torture you could possibly do to yourself, and most who have had this surgery like myself wind up on CPAP. I wish I had done some research before my surgery.

Good luck with your treatment.

ENT Office Visit

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