Replies to This Discussion

Permalink Reply by Mike on July 9, 2009 at 7:16pm

Scott, you'll get a variety of responses on this with all sorts of perspectives. I'm in kind of a similar situation to you in that the nature/cause of my sleep apnea is the narrowness of my airway because I have enormous tonsils and a huge uvula. My doctors too said I'd make an outstanding candidate for surgery. I decided against it for a few reasons. First off, I've only had one surgery in my life and it backfired and actually made things worse, so I'm not a fan of surgery. With the sleep apnea surgery, I have heard of cases where the surgery only cut the AHI down 50% or so --- a "success" by surgical standards. Also, I've heard of surgeries making it impossible to use the CPAP to any effect afterward. Second, I do very well with CPAP, and I have the attitude 'if it ain't broke, don't fix it' -- you're in the same boat. You've cut down your AHI DRAMATICALLY with CPAP --- good job. Can your surgeon guarantee or even say with any confidence that the surgery will get your AHI down to 3-4 events/hour? Of course not. But you have that guarantee with CPAP because it's empirically happening for you right here, right now! Third, surgery is so final -- once they cut that tissue out, it's gone, with whatever scarring/other associated risks that carries. CPAP on the other hand is more of a flexible solution. When the miracle sleep apnea pharmaceutical comes on the market -- and this is underway -- I'll be able to walk away from my CPAP and pop a pill and be done with it. There is tremendous innovation going on in the field of sleep medicine, and i think you'd do yourself a service by waiting it out awhile to see what emerges on the market.

All that said, reasonable people can disagree on this and choose surgery, and that would not be the "wrong" choice. I just am saying it was the "wrong" choice for me, for the reasons described above.

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Permalink Reply by Judy on July 9, 2009 at 8:26pm

Interesting combination of "correctable causes". Yeah, uh huh. The deviated septum? Yeah, if it really is deviated it can make breathing thru the nose one degree or another of less than desirable. Tonsils? Yeah, if they are prone to infections or extremely large. The uvula??? Uh uh, no way, baby! No way in h*ll! I'd be getting some second and third opinions. CPAP looks pretty darn good to me compared to that! Really explore what is entailed and just how successful the surgery is AND WHAT the surgeon defines as "successful". Make sure his definition of "successful" is the same as yours!!!

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Permalink Reply by Steven Y. Park, MD on July 10, 2009 at 12:05am

As a sleep apnea surgeon, I agree with Mike on this issue for you. If your AHI is down to 3-4, why do anything else such as surgery or oral appliances that won't come close? Of course if you want a complete surgical cure, you can opt for a tracheotomy. MMA surgery has a higher success rate, but it's a relatively big surgery.

Your surgeon is right in that thin people who have mainly structural jaw issues do better with sleep apnea surgery, but in general, your recommended choice of procedures gives you no better than a 40% chance of "surgical" success. Without looking at you it's hard to say, but if you have very large tonsils and you can see the entire height of your tonsils and the back of your throat, then it can be up to 80% (using the Friedman criteria).

My philosophy with surgery is not to do surgery just to see if it works. You have to know exactly where the obstructions are happening. In most cases the tongue is almost always involved. This is why the UPPP procedure has only a 40% chance of success. If you add a definitive tongue base procedure (based on Stanford's data and many others and even my own), success rates can be up to 80%.

Obviously there's a lot of controversy over the definition of success and how to reconcile any significant residual apneas and hypopneas. In certain patients that have tried everything and are at wit's end, surgery may be a better option than in your case. I've seen many people who have struggled for months or years, trying everything possible, and not able to benefit from or use their CPAP or dental devices. These are the people that are in tears. For these people going from 58 to 12 is much better than not being able to treat it at all and staying at 58. Quality of life is also a big consideration. Yes, there will always be people who don't respond to surgery, just like there will always be certain people who don't respond to or can tolerate CPAP or oral appliances.

One thing I've noticed with all the various sleep apnea forums that I've visited is that rarely do any of the surgical patients that are happy with their results ever participate in these type of discussions. I guess they don't need to. The ones I see are mainly the ones who underwent UPPP surgery only and are either frustrated, angry or confused about their experiences or options.

My approach is to help patients maximize their use of CPAPs or oral appliances first. Frequently, opening up the nose medically or surgically can help people tolerate these options better. I'm pretty liberal about this. I also spend a great deal of time counseling patients about their CPAP issues and dealing with the DME vendors.

I've heard about patients not being able to use CPAP after surgery, but I've never seen it. Physiologically and anatomically, it doesn't make sense. I don't recall any studies showing this, either. If there's anyone on this forum that had this experience, please let me know.

I'm extremely selective in offering surgical options, but only after exhausting all other options. When I do go to surgery, I usually address the tongue along with the soft palate, and sometime only the tongue. The few times I do a UPPP alone is when the patient is reluctant to undergo a tongue procedure and wants to do it in stages. Typically, they'll go on to need the tongue taken care of later. The only reason I continue to perform these procedures is because of the results. It's truly gratifying to see patients' lives that are changed radically for the better. No matter which option you choose, there will always be significant failures. There's a lot more we can do to help patients use CPAP more effectively, but in the real world, the overall long-term compliance rates and effectiveness is very low, probably way under 50%.

Until we have a more definitive approach to "curing" sleep apnea, we need to have all the options open, since some patients will respond better to some options over others. Sorry, Mike, but I'm not as optimistic as you regarding a future cure. There's been a lot of fine tuning of our current options, but nothing has changed significantly over the past 20 years. I don't see any future with the pharmacological approaches that are coming out, either.

The bigger issue is that not nearly enough education, support and counseling is being done for CPAP, oral appliances are being over-marketed, and surgical procedures are being performed in the wrong areas for the wrong reasons.

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Permalink Reply by Henning on July 10, 2009 at 7:06am

Well, according to Dr. Park's message I have to tell the rest of my story now. I would have waited until my next sleep test next month. But I am one of those who have had great success with surgical procedures.

In addition, I have stood in precisely the situation that Scott describes.

I have earlier in some posts told about my problems with my CPAP treatment, so I will just give a brief summary here.

For 3 years ago I came in CPAP treatment and the first 3-4 months were fantastic. Then my problems started. I was dizzy with Vertigo attack (inner ear problems). I had problems with my middle ear because of Eustachian tube problems, and had an ear tube inserted. I had big problems with blockage in the nose, and all in all, I was unable to work for about 8 months.

It took a long time before I related these problems with my sleep apnea and CPAP treatment.

After 2 years, I had my first surgery (except from my ear tube). This was an operation in the nose where my ENT surgeon corrected my deviated septum, a sinus operation and shrinkage of my turbinate’s. This operation was a great success. It gave me a lot more air through the nose, and my hope, of course, was that I could better tolerate my CPAP treatment.

After this operation, I had a new sleep test done and I was now gone from moderate to mild sleep apnea.

Unfortunately my CPAP treatment got worse and worse. For every night I used my CPAP machine my AHI grew higher and higher. After 3 nights I was in the severe category, so I stopped using CPAP.

I have been examinated numerous of times, but nobody has been able to find any kind of obstruction by the usual studies of the nose and pharynx, while performing the Müller maneuver.

In a very long time, I knew that I had expiratory apneas, but there are not many doctors who know anything about this condition.

My ENT surgeon felt it was at my Uvula and my tonsils the problem was, but she is not a sleep doctor, and could not demonstrate that it was here my obstruction occurred. So I have been very reluctant to undergo this operation, also because I felt that the obstructions occurred higher up behind the nose.

I also considered an oral appliance, and have spoken to a specialist in Germany a few times, but my sleep doctor felt that it would not help much.

So I decided to undergo a second opinion at the country's largest sleep clinic (this is in our public system). I used my CPAP for 6 nights prior to this meeting and on the day I was a little groggy. But fortunately, my situation was so bad that I could not exhale when I lay on my back even when awake.

It was therefore an easy matter for the sleep doctor (and ENT surgeon) to find out where my obstruction occurred. It was my Uvula there was very swollen and made the obstruction, like my tonsils were huge and swollen. He studied at the same time the space behind my tongue. There was plenty of space (as a free highway as he said).

After that my decision was easy. Six weeks ago I had an operation on my Uvula (She removed about. ¾ of it, so I still have a sweet little one) and got my tonsils removed. This was done in complete anesthesia with a single night's hospitalization. She used the “new” coblation technique, so the pain afterwards was not so bad.

Just after three days I was aware that this operation was an extreme success. With these 2 operations (in fact 5 together) my breathe is relatively gone from breathe through a straw to breathe through a hose pipe.

While I wait for my next sleep test, I tried making my own little sleep test. I put my CPAP machine for a straight pressure of 4cmH2O. There were absolutely no apneas. In return, I can now tolerate using my CPAP, but probably not need it anymore. So even if, against all expectations, proves that I still have sleep apnea, has it all been worth it.

I will not forget to tell that my day time breathe also have been enormously improved. Here in the summer heat, I enjoy being up early in the morning and go outside just to be able to feel the cool air flow freely through my nose and throat. It is indescribable.

Henning

• ▶ Reply

Permalink Reply by Judy on July 10, 2009 at 8:02am

Dr Park and Henning. Thank you both so much for sharing.

Unlike Mike I fail to see how any pharmocological "cure" can ever be discovered or developed for an anatomical issue.

But more to the point, Dr Park, I only wish so many more sleep "specialists" took such a well-rounded view of this OSA issues and were as open-minded and took as thorough approach. AND who recognized and saw to the follow thru on education, support and counseling for their OSA patients!! You are a rare and precious jewel in the tattered crown of the sleep profession!

And Henning, I'm so glad you are feeling so well and so rested and that your surgeries have been so successful!! Congratulations! Please stay w/us and continue to share your experience. I'm a doomsayer regarding surgery and your experience is an excellent counter-balance!

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Permalink Reply by Henning on July 10, 2009 at 2:16pm

As I see it UPPP alone is an outdated mindset. Today we are talking about multi-level surgery.

As Dr. Park has explained many times, we must look at the whole picture from the tip of the nose to the voice box.

In my situation, I was lucky that my soft palate was not a part of the solution. This, I would probably have considered very carefully before I had accepted.

However, I would probably have accepted a surgery on my tongue, if it had been necessary.

BTW. You have a lot of focus on APAP. I can tell you that expiratory apneas cannot be handled by APAP.

Henning


j n k said:

I personally consider what Dr. Park just posted to be the most balanced, nuanced, and accurate statement I have seen on questions about the present state of OSA surgery, and I will be linking to it in the future with any posts I might make on the subject elsewhere.
My understanding is that the AASM considers previous UPPP surgery to be one of several contraindications for APAP use, so in that sense, the procedure can limit the options for future decisions a UPPP patient might have available in the search for effective PAP therapy. I have also heard it said anecdotally that making the "hole" that the tongue can fall back into larger may, for some, make pressure needs increase instead of decrease, although I am personally aware of no scientific literature proving that statistically (if there is even a way to do that), so that may not be true.

The people I would like to hear from are the people who got palate surgery five or more years ago and are now very pleased with the experience and the results, including PSG evidence showing that they are now better off than they were before surgery. But hey, that's just me.

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Permalink Reply by Crabby Appleton on July 10, 2009 at 3:19pm

I had the surgery about 12 years ago (when I was 35) and it was second (only to kidney stone surgery) in line of the worst pain I've ever experienced. I had the uvula, tonsils, etc cut out, along with significant palate trimmed back. This only helps to a degree. The problem (not a blessing, at least in this case) is that I have a huge tongue. Cutting out all of the stuff in the throat just left a bigger area for my tongue to fall into when I fell asleep. The surgery was the "gold standard" at the time. I had to "re-learn" how to swallow. Still all these years later, I still have even saliva go down the "wrong pipe" and I end up hacking for an hour. I have moderate to severe apnea. I religiously wear a full CPAP mask every night, which I hate (claustrophobic), but it has helped marginally. It does absolutely nothing if I happen to end up on my back (which must happen often) when I'm sleeping. I've kinda reserved myself to believing I'm gonna feel groggy & disoriented (CRAPPY) every morning. My sleep doc says my levels are good, which only adds to the problem of getting the problem addressed.

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Permalink Reply by Jim Nadolny, BS, CRT on July 10, 2009 at 4:26pm

Dr.Park,
It was a pleasure reading your comments on surgery! I have seen many inappropriate candidates get the UPPP procedure, suffer through the pain, and return to using Cpap in less than six months. On the other hand if a patient is noncompliant with Cpap, and they are good candidates for the surgery, It sometimes can help. Many patients do return to Cpap post surgery, but their pressure requirements are sometimes decreased. Lower pressures can lead to greater compliance in therapy. Such a surgery, and result would be a success in my book. The issue has so many variables, that no one answer is correct. Each patient must weigh the facts, get several opinions, know the odds, and make an informed decision. Interesting Topic, Iwillput a linkback to it from http//:cpapcritic.com

Steven Y. Park, MD said:

As a sleep apnea surgeon, I agree with Mike on this issue for you. If your AHI is down to 3-4, why do anything else such as surgery or oral appliances that won't come close? Of course if you want a complete surgical cure, you can opt for a tracheotomy. MMA surgery has a higher success rate, but it's a relatively big surgery.

Your surgeon is right in that thin people who have mainly structural jaw issues do better with sleep apnea surgery, but in general, your recommended choice of procedures gives you no better than a 40% chance of "surgical" success. Without looking at you it's hard to say, but if you have very large tonsils and you can see the entire height of your tonsils and the back of your throat, then it can be up to 80% (using the Friedman criteria).

My philosophy with surgery is not to do surgery just to see if it works. You have to know exactly where the obstructions are happening. In most cases the tongue is almost always involved. This is why the UPPP procedure has only a 40% chance of success. If you add a definitive tongue base procedure (based on Stanford's data and many others and even my own), success rates can be up to 80%.

Obviously there's a lot of controversy over the definition of success and how to reconcile any significant residual apneas and hypopneas. In certain patients that have tried everything and are at wit's end, surgery may be a better option than in your case. I've seen many people who have struggled for months or years, trying everything possible, and not able to benefit from or use their CPAP or dental devices. These are the people that are in tears. For these people going from 58 to 12 is much better than not being able to treat it at all and staying at 58. Quality of life is also a big consideration. Yes, there will always be people who don't respond to surgery, just like there will always be certain people who don't respond to or can tolerate CPAP or oral appliances.

One thing I've noticed with all the various sleep apnea forums that I've visited is that rarely do any of the surgical patients that are happy with their results ever participate in these type of discussions. I guess they don't need to. The ones I see are mainly the ones who underwent UPPP surgery only and are either frustrated, angry or confused about their experiences or options.

My approach is to help patients maximize their use of CPAPs or oral appliances first. Frequently, opening up the nose medically or surgically can help people tolerate these options better. I'm pretty liberal about this. I also spend a great deal of time counseling patients about their CPAP issues and dealing with the DME vendors.

I've heard about patients not being able to use CPAP after surgery, but I've never seen it. Physiologically and anatomically, it doesn't make sense. I don't recall any studies showing this, either. If there's anyone on this forum that had this experience, please let me know.

I'm extremely selective in offering surgical options, but only after exhausting all other options. When I do go to surgery, I usually address the tongue along with the soft palate, and sometime only the tongue. The few times I do a UPPP alone is when the patient is reluctant to undergo a tongue procedure and wants to do it in stages. Typically, they'll go on to need the tongue taken care of later. The only reason I continue to perform these procedures is because of the results. It's truly gratifying to see patients' lives that are changed radically for the better. No matter which option you choose, there will always be significant failures. There's a lot more we can do to help patients use CPAP more effectively, but in the real world, the overall long-term compliance rates and effectiveness is very low, probably way under 50%.

Until we have a more definitive approach to "curing" sleep apnea, we need to have all the options open, since some patients will respond better to some options over others. Sorry, Mike, but I'm not as optimistic as you regarding a future cure. There's been a lot of fine tuning of our current options, but nothing has changed significantly over the past 20 years. I don't see any future with the pharmacological approaches that are coming out, either.

The bigger issue is that not nearly enough education, support and counseling is being done for CPAP, oral appliances are being over-marketed, and surgical procedures are being performed in the wrong areas for the wrong reasons.

• ▶ Reply

Permalink Reply by RockRpsgt on July 11, 2009 at 2:29am

Great post Scott. I agree that the surgery should only be done if those things in question are bother you in anyway. If your toncils are bothering you or you are having trouble breathing through your nose. Don't do it just to improve your AHI. You have already done this with your current therapy.


Mike good luck with that pill. What do you think the side effects are going to be for a fully toned esphagus why we sleep. Could get ugly.

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Permalink Reply by Henning on July 12, 2009 at 7:26am

I am sure we are in complete agreement. In a tread from Mike I saw this statement from Dr. Park.

“One of the qualities that I see in patients that are highly successful at managing their sleep apnea condition is their ability to surround themselves with a team of trusted advisors. This can include a sleep doctor, a dentist, an ENT surgeon, a CPAP equipment specialist, and their medical doctor. Since there's no comprehensive sleep apnea center that incorporates all these specialists such as what we have for cancer, this is the next best alternative.”

I fully agree with this opinion. But it is also as I see it the hardest part.

To find and select the specialists you really trust you must first familiarize yourself thoroughly in all aspects of Sleep Apnea and the treatment options available (and the risk).

Especially if there are problems with CPAP treatment, which I had, it's a very long road.

In Denmark, sleep medicine is a relatively new discipline and there are very few specialists. I've probably been in contact with at least 20 specialists before I was able to assemble a team I really trust.

Few of them are talking together, so you should be able to relay information’s between them, and be able to discuss the opportunities available, and they must be prepared to a layperson, sometimes in single areas know more than they do (this can be a big issue).

A forum like this is a good place to gain knowledge, just as I can recommend Dr. Park's book.

Before each of my surgery’s (even the mainstream), I read everything I could find on the internet, like I before the last one elected a second opinion. I also have discussed all of the risks with my surgeon and others before I took the position.

So I am not an advocate of simply accepting the first and best offer.

For your last question, am I still using my APAP?

No. I currently use nothing. I await my next PSG study next month.

However, I have some evidence that I have got rid of my Sleep Apnea. I wake up fresh in the morning, my blood pressure is normal without medication, I am losing weight (In fact I'm nearly at my ideal weight). The nights where I had my apneas my bed looks like a battlefield. Today, I can barely see that I have slept in it.

So I am very optimistic. But if I still have Sleep Apnea then I now can use my APAP again.

Henning


j n k said:

I personally consider what Dr. Park just posted to be the most balanced, nuanced, and accurate statement I have seen on questions about the present state of OSA surgery, and I will be linking to it in the future with any posts I might make on the subject elsewhere.
My understanding is that the AASM considers previous UPPP surgery to be one of several contraindications for APAP use, so in that sense, the procedure can limit the options for future decisions a UPPP patient might have available in the search for effective PAP therapy. I have also heard it said anecdotally that making the "hole" that the tongue can fall back into larger may, for some, make pressure needs increase instead of decrease, although I am personally aware of no scientific literature proving that statistically (if there is even a way to do that), so that may not be true. The people I would like to hear from are the people who got palate surgery five or more years ago and are now very pleased with the experience and the results, including PSG evidence showing that they are now better off than they were before surgery. But hey, that's just me.

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Permalink Reply by Narciso on July 12, 2009 at 8:07am

Just saw this discussion thread ...

Henning, I appreciate your story.

I have a couple of questions ...
a. What is expiratory apnea and how do you diagnose it ?
b. With hindsight, was the first surgery you had necessary ?


Henning said:

Well, according to Dr. Park's message I have to tell the rest of my story now. I would have waited until my next sleep test next month. But I am one of those who have had great success with surgical procedures.

In addition, I have stood in precisely the situation that Scott describes.

I have earlier in some posts told about my problems with my CPAP treatment, so I will just give a brief summary here.

For 3 years ago I came in CPAP treatment and the first 3-4 months were fantastic. Then my problems started. I was dizzy with Vertigo attack (inner ear problems). I had problems with my middle ear because of Eustachian tube problems, and had an ear tube inserted. I had big problems with blockage in the nose, and all in all, I was unable to work for about 8 months.

It took a long time before I related these problems with my sleep apnea and CPAP treatment.

After 2 years, I had my first surgery (except from my ear tube). This was an operation in the nose where my ENT surgeon corrected my deviated septum, a sinus operation and shrinkage of my turbinate’s. This operation was a great success. It gave me a lot more air through the nose, and my hope, of course, was that I could better tolerate my CPAP treatment.

After this operation, I had a new sleep test done and I was now gone from moderate to mild sleep apnea.

Unfortunately my CPAP treatment got worse and worse. For every night I used my CPAP machine my AHI grew higher and higher. After 3 nights I was in the severe category, so I stopped using CPAP.

I have been examinated numerous of times, but nobody has been able to find any kind of obstruction by the usual studies of the nose and pharynx, while performing the Müller maneuver.

In a very long time, I knew that I had expiratory apneas, but there are not many doctors who know anything about this condition.

My ENT surgeon felt it was at my Uvula and my tonsils the problem was, but she is not a sleep doctor, and could not demonstrate that it was here my obstruction occurred. So I have been very reluctant to undergo this operation, also because I felt that the obstructions occurred higher up behind the nose.

I also considered an oral appliance, and have spoken to a specialist in Germany a few times, but my sleep doctor felt that it would not help much.

So I decided to undergo a second opinion at the country's largest sleep clinic (this is in our public system). I used my CPAP for 6 nights prior to this meeting and on the day I was a little groggy. But fortunately, my situation was so bad that I could not exhale when I lay on my back even when awake.

It was therefore an easy matter for the sleep doctor (and ENT surgeon) to find out where my obstruction occurred. It was my Uvula there was very swollen and made the obstruction, like my tonsils were huge and swollen. He studied at the same time the space behind my tongue. There was plenty of space (as a free highway as he said).

After that my decision was easy. Six weeks ago I had an operation on my Uvula (She removed about. ¾ of it, so I still have a sweet little one) and got my tonsils removed. This was done in complete anesthesia with a single night's hospitalization. She used the “new” coblation technique, so the pain afterwards was not so bad.

Just after three days I was aware that this operation was an extreme success. With these 2 operations (in fact 5 together) my breathe is relatively gone from breathe through a straw to breathe through a hose pipe.

While I wait for my next sleep test, I tried making my own little sleep test. I put my CPAP machine for a straight pressure of 4cmH2O. There were absolutely no apneas. In return, I can now tolerate using my CPAP, but probably not need it anymore. So even if, against all expectations, proves that I still have sleep apnea, has it all been worth it.

I will not forget to tell that my day time breathe also have been enormously improved. Here in the summer heat, I enjoy being up early in the morning and go outside just to be able to feel the cool air flow freely through my nose and throat. It is indescribable.

Henning

• ▶ Reply

Permalink Reply by Henning on July 12, 2009 at 11:49am

To Narciso and the underscored to j n k (and all of of it to others).

There are no recognized terms for expiratory apneas. This term is especially used for infants and babies, where this condition in some cases is linked to sudden death. In addition, you can find a number of other terms for this condition.

It is a condition which is somewhat overlooked.

In one study I found that about 40% of all with Sleep Apnea has expiratory apneas, but most of them have it at the end of the expiration - just before a new inspiration. In this case, you can compare the situation with a "normal" inspiratory apnea.

But some have standalone expiratory apneas (I have not found the proportion), where the apneas occur at the beginning of the exhalation.

You can now ask what the difference between inspiratory and expiratory apneas is. If you are well treated and your AI = 0 then it has no consequences. Hypopneas have no meaning in this context.

There is only one way to diagnose expiratory apneas. This is by combining a PSG study with a PES measurement. This may show whether you have negative (inspiratory) or positive (expiratory) pressure in your esophageal.

This measurement is rarely performed on a normal PSG study, although this should be standard. It is the same measurement to detect UARS.

In untreated apneas there are major differences in inspiratory and expiratory apneas. I will soon give a longer explanation of these differences. But the main difference is that with expiratory apneas you have no desaturations (This is also the only advantage of this type of apneas).

Regarding your question about my first surgery was necessary.

In connection with my expiratory apnea, I am not sure. At this time it was a question on CPAP compliance. But in hindsight, I am very pleased with this surgery because it gave me a much better breathing.

In general, I am of the opinion that ENT Surgeons had to look more aggressively to the situation of Sleep Apnea patients.

With these mainstream surgeries, I think it would help many Sleep Apnea patients with a better compliance.

Henning

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