tonsillectomy and uvpp surgery on Wednesday.

[Guest]

I am doing great. I am completely healed and I am sleeping wonderfully. My husband says that my snoring is gone. I haven't used the CPAP at all and am almost ready to send it back. In retrospect, the surgery was worth it. 2 weeks of pain to be rid of that machine. I couldn't live my life as a hosehead. Losing the 15 lbs probably helped too!!

Hold it! The fact that you aren't snoring doesn't mean you don't need your cpap machine! And it certainly doesn't mean you don't have OSA! Back in the beginning of this thread you said you knew this surgery wasn't a cure, remember? Also, this surgery may stop snoring initially, but in the majority of cases, snoring returns. I'm assuming you did a lot of research on the effectiveness of this surgery and saw the many studies proving the diminishing returns and poor statistics with long term results.

If you are choosing not to use your cpap anymore because you don't like it, that's one thing. But to stop using your cpap because you THINK you no longer have sleep apnea is entirely different. There's not a doctor in the world who would be foolish enough to recommend a patient stop using cpap until a followup PSG has been evaluated. If you want to know the truth, have the PSG. See the results. In the majority of cases following your surgeries, the OSA is NOT cured and cpap is still required.

Again, if you've just plain decided to not use cpap anymore, that's up to you. But to imply your OSA was cured by your surgeries without having a followup PSG is absolutely false.

Betty

[Guest]

From someone who has done a lot of research and had a lot of surgery, this is from a post by Billinseattle from TAS:

I've had all of these surgeries...and thensome. 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

to see the entire thread at TAS, click on this: Surgery

[ozij]

ljmcd I'm glad you're feeling better.

Have you set up a repeat PSG? Will you report its results please?

For anyone considering UPPP - one of the major problems with the reported success results in many studies is that "success" was defined a "partners report snoring has ceased" and no follow up PSGs were done.

I do hope that ljmcd and her ENT take her sleep apnea more seriously, and will try to make sure that her breathing problems are indeed healed as well as her snoring.

O.

[New Hampshire]

That's great news! Congratulations on your success! Please keep us all posted on your long-term success, too.
--Dennis

[Guest]

For anyone out there who is considering undergoing this surgery, please read.

ljmcd, if you're hoping UPPP might be a cure for your sleep apnea, I'd suggest you read as much as possible about UPPP while you still have time to cancel that largely ineffective surgery. Discussions about UPPP are in the bottom third of this page:

LINKS to surgery, turbinates, Pillar, TAP experiences

Unless your husband has a full PSG sleep study at least a year (and another one at the two or three year mark) after having had his UPPP, there's no way to know he's not still having apneic episodes. Sleeping like he's "dead" is no indication of having cured sleep apnea. The UPPP might have stopped his snoring without stopping apneas and hypopneas.

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.

Thank you for saying that, Barb. It can't be said too many times...anyone who has a UPPP done should definitely have at least one (preferably more!) followup PSG sleep studies, one year out and then again farther into the future. Masking a symptom certainly can fool people into thinking they no longer need cpap, when they do.

I'm always so sorry every time I hear of someone having a UPPP. That particular procedure rarely cures Obstructive Sleep Apnea. It amazes me that ENT's still do it at all, given how little it accomplishes long term.

Even those who go into UPPP realizing it might only lessen their AHI, and are hoping at best to just be able to use less pressure with CPAP, are often disappointed after a year or more. The pain vs gain is not very promising at all from what I've read.

UPPP Ohio Sleep Medicine Institue 10% success rate?

Jul 03 2005 subject: Mayo Clinic - Interesting article

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

LINKS to surgery, turbinates, Pillar, TAP experiences Discussion topics about UPPP are on bottom third of page.

I apologize for injecting such a negative tone into a thread where people are sharing good advice for dealing with UPPP recovery. But there are many readers who may be desperately wanting to get off CPAP or not start CPAP. They need to know the downside before an ENT encourages them to go the UPPP route.

There are better ways, imho, such as trying a dental device like the TAP II combined with Pillar Procedure to address the palate issues. Or a surgery that is drastic but offers a better than 90% true cure...MMA + GA...the surgery Swordz is trying to get.

[another guest]

this thread.

[genevaraye]

After much contemplation and speaking with folks that had this surgery, I decided to go ahead with it. I am two days post-op as I type this. Was it painful? Yeah, a little. But I'm doing very well so far and I've even had some decent sleep.

I'm not one of the patients that is overweight, has high blood pressure or any other typical symptom that gave the doctors reason to suspect I had apnea. I was finally diagnosed after years of complaining and finally getting a doctor that said, "go back to your primary care doc and tell him you need a sleep study." Otherwise, I think I'd still be slumping my way through life. Ten years is too long to go undiagnosed. After several months of trying four different masks, different settings, etc., I opted to have the surgery. Sitting here with stitches in my mouth and a rather sore throat, I don't regret it so far.

I figured that if going through 7-10 days of pain increases my chances of sleeping better, it's worth the gamble. Stay tuned -- I'll give updates over the next few days/weeks.

Good luck to each of you who has a decision like this to make. I believe we each have to do our own research and in the end take a look at what you think is best for you. Only you have to live with your decision.


genevaraye

[tomjax]

genevaraye.
Thanks for bumping this very interesting thread.
I hope your results are all that you hope for, but I cannot help but wondering why you discounted and ignored the very cogent and convincing postings on this very important procedure.
Just how many people did you talk to and how long post op are they that you were convinced this was the decision that was best for you?

We all make decisions based on what we know about a particular dilemma and the better this learning curve results in being truly informed, the better we are able to make an informed decision.

I have been monitoring this and other forums and am totally convinced this surgery would not be an option for me.

You evidently feel otherwise and I hope you continue to keep us posted and wonder what your assessment will be in about a year or so.
Again I wish you well.
Tom

[socknitster]

My symptoms began when i was thin and very active. 10 years later when I am finally diagnosed, I am moderately overweight and sedentary. I think the apnea caused the weight gain because I gradually became too tired to do all the things I used to love to do!

If you need to lose weight, great, do so, but don't think it will cure the apnea. Perhaps in some cases a "heavy neck" will cut off airflow, but it is far more likely to be internal structures causing the disorder.

I think I am much more likely to get down to my ideal weight now on cpap than ever before. And in my case, at least, I doubt it will make any difference in my need for cpap.

Apnea is very complex. Don't oversimplify it in your mind. There can be a lot of contributing factors. Keep a positive attitude and keep looking for contributing factors.

I'm going to have my tonsils out because they are big and have bothered me for a long time. While I know there is a tiny part of me that hopes this will cure my apnea, I'm realistic. Personally I refuse to have the big surgery. It seems too drastic from my point of view. But every person has to choose for themselves.

Please, just don't oversimplify apnea to say that we are all fat and just need to lose weight. That is cruelty to the sleep-deprived! There is just so much more to this!

jen

[cpaprookie]

after my third follow up from a septplasty, a turbinbate reduction AND
sinoscopy of all sinuses,
i talked to my doctor about pillars... (for a cure of the apnea)
he checked out my throat, and said at a glance i would not be
considered a candidate.
we had talked about UP3 before on occasion, and last friday, he said
i would be more likely to achieve a result if we did THAT.
he knows my stance on UP3, and then said in alot of cases it
is not covered by insurance, and i might be best off getting
reacquainted with my cpap...

my ENT deserves a pat on the head

[Sleeping With The Enemy]

This was a thread that I started...I am still cured from my sleep apnea after having this surgery according to the repeat sleep study I had done.

Anyone want to buy my Remstar Auto w/C-Flex? I have 2 1/2 Activa Masks and 1 Comfortlite 2 mask. I also have a card reader with 3 smart cards.

I'd like $400 out of it. Thanks

[Sleeping With The Enemy]

I guess I was not the author of this thread, but had one very similar....

[Guest]

I am 5ft. 2 1/2 inches tall and weigh 132, i have never been really that overweight in my life except once when I was in my early 30's, so weight dosen't really have a whole lot to do with someone having OSA, yes the more overweight you are, the higher cpap pressure you need, but it's hard to convince some of these ignorant doctors that you can have OSA without being overweight. When I asked my PA for a Sleepy Study, she looked me over real good and said "you certainly aren't overweight" so, you might not have sleep apnea , but we'll go ahead and get a sleep study on you anyway. I had read another post on this forum where another short gal posted something similar and she wasn't overweight either.. By the way, (not to get off the subject), I have a Dental apppointment in a month or two from now for my 6 month cleaning, my denist or hygenist don't know yet that I have been diagnosed with OSA and my dentist always numbs my mouth before the hygentist cleans my teeth, does he need to do anything different since I have OSA ? Thanks for any posts regarding this matter... SAW an ENT 2 weeks ago for the first time and he wants to do the UPPP, tonsils, & Deviated nose surgery on me and all at the same time ( yea right), I thought to myself.... I will not/I REFUSE to get the UPPP and Tonsil thing but I will have the deviated septum surgery if they will ever call me back... I would definately ADVISE "NO" for the UPPP, I have read horror stories on that plus "MAJOR SCAR TISSUE" grows back in it's place.... But, whatever you decide, I WISH YOU THE VERY BEST OF LUCK and i'm sure you will post back here after your all better from the surgeries....

[socknitster]

See this post for info about my results with having a tonsilectomy:

viewtopic.php?p=213326&sid=72dbdbffa050 ... 044#213326

I would never even consider UPPP, but BOY did the tonsilectomy ever help me.

Jen

[ManitobaD]

Hi,
I am new to CPAP and I hate it. But this embaressing mask has been the motivation I have needed I guess to drop some pounds. I am 6'2" and started out at 238Lbs, I have lost 25Lbs so far and I am shotting for about another 20 in the next 5 months. My pressure only needs to be set to 7 and I do not snore.
Here are my questions for the group. Am I fooling myself thinking that this wieght loss will fix the problem because I was just kind of fat, not really obese. Second, I sleep on my side but in the sleep lab they had me sleep on my back. Is it possible the change in possition could have made my apneas seem worse on paper? They said I was in the moderate to severe catagory.
Thanks everyone!