UARS friendly physician

[1041]

How exactly did they rule out GERD?

[SleepingUgly]

ENTs are not the ones that should be diagnosing GERD; gastroenterologists diagnose GERD.

[patrissimo]

The most helpful thing I tried is using a device called a PowerLung. You can look it up on Amazon; you breathe into it and it adds resistance during both inhalation and exhalation. I can't say that it will help other people, but it made a huge difference in my sleep (it got worse, first, though--it takes a couple of weeks to get used to it). One can hypothesize that weak breathing and tongue muscles and narrow airways codevelop during childhood. While I'm not really sure if this is true in general or not, I seem to have had both.

Cool, I will try it out. For others on the thread: PowerLung offers resistance based exercise for inhaling and exhaling for $100. Most of the other (cheaper) lung exercisers are flow restriction based, as opposed to resistance based, which has not held up in studies, at least that's what this blog post says, and I believe it: http://blog.betterinnovations.com/2010/ ... z2HtLjZK7A

FWIW: I recently had another sleep study. I was not able to sleep all that long, mostly due to being traumatized by sleep studies and sleep apnea treatments in general and hating having those wires attached to me yet again. But I do think that my results are somewhat relevant and show that this isn't all delusion.

AHI: 0.7
Number of obstructive apneas: 0.
Number of hypopneas: 0.
Average oxygen level: 97%.
Minimum oxygen level: 95%.

I do still have a lot of RERAs, and my RDI was something about 24. I wake up too early and have fragmented sleep. But I'm moving in the right direction. I am not desperate, and life is not intolerable the way it was before.

Congrats, glad to hear you've made some progress! Was this sleep study done with no cpap? It's interesting to see RDI so much higher than AHI, I guess UARS is real . When you use xPAP, do those RERAs show up as flow limitations?

[patrissimo]

As much as surgery terrifies me, and will deflate my 401k, I'm starting to think it makes sense. This thread has me a bit worried, though. Two different sleep doctors said MMA would take care of my sleep issue. As in, make it go away. They were both pulmonologists. I don't really know how much they base their opinion on the nature of my obstruction. They did say that they consider an OSA person with normal BMI and generally good health to be a candidate for surgery. I later learned that my OSA can be categorized as "hereditary", but they didn't refer to it like that. I asked the ENT that checked me for GERD; she was less sure on surgery, based on very little professional experience with MMA. She did share my skepticism about soft-tissue surgery, which has never been recommended for me anyway. That may be because my tonsils are long gone, and I don't snore.

My primary care doctor said something like "A lot of times these surgery decisions are made when people just decide that they've had enough".

I'm a bit freaked out that both surgery and OSA become more problematic with age. I feel pressured to do this as soon as possible, if I'm going to do it at all.

Well there, I've shared most of my thoughts on this. Not an easy thing to be sure about, is it?

No, it's not. I would expect some significant improvement but not a cure, unless someone experienced looks at your airway and says "It's definitely small only in the direction that MMA expands it". If ASV is able to bring your RERAs close to zero, then it doesn't seem like MMA would give much benefit. I definitely got it because I decided that I'd had enough. If halving your pre-cpap respiratory events seems worthwhile (especially if it lets your events with cpap be much lower), then do it. If you want a complete no-xpap cure, then it seems like MMA is a long shot.

[syzygy]

Cool, I will try it out. For others on the thread: PowerLung offers resistance based exercise for inhaling and exhaling for $100. Most of the other (cheaper) lung exercisers are flow restriction based, as opposed to resistance based, which has not held up in studies, at least that's what this blog post says, and I believe it: http://blog.betterinnovations.com/2010/ ... z2HtLjZK7A

Yes, there are a bunch of other tools out there. I got this one because it seemed to be one of the best, and I haven't been disappointed. I'm also interested in the Frolov breathing tool, but I figure one is enough for now.

There are 4 models. I have the next to the hardest one. It's plenty challenging for me; most people probably shouldn't start with the hardest one.

FWIW: I recently had another sleep study. I was not able to sleep all that long, mostly due to being traumatized by sleep studies and sleep apnea treatments in general and hating having those wires attached to me yet again. But I do think that my results are somewhat relevant and show that this isn't all delusion.

AHI: 0.7
Number of obstructive apneas: 0.
Number of hypopneas: 0.
Average oxygen level: 97%.
Minimum oxygen level: 95%.

I do still have a lot of RERAs, and my RDI was something about 24. I wake up too early and have fragmented sleep. But I'm moving in the right direction. I am not desperate, and life is not intolerable the way it was before.

Congrats, glad to hear you've made some progress! Was this sleep study done with no cpap? It's interesting to see RDI so much higher than AHI, I guess UARS is real . When you use xPAP, do those RERAs show up as flow limitations?

Yes, without CPAP. When I used CPAP in the past, no matter what pressure I used, I would have only a couple of centrals (or whatever they called them) per hour. I don't remember seeing any evidence of flow limitations. (In case it's not clear, I haven't used CPAP for quite some time.)

[syzygy]

Patrissimo - If you are still following this thread, thank you for your thoughtful comments back in December. When I'm in a holding pattern on my therapy, I'm not too consistent at checking in on this forum. It tends to keep me up too late at night

After 4 weeks, ASV has improved my daytime energy and alertness - gradually, but definitely. However I have several issues with this therapy, the most difficult being aerophagia. It messes up my digestion! (And no it is not from GERD, although I might be developing that now, too.) My eyes and throat are chronically irritated since starting with ASV. (Hah - feel much better, but look like crap.) I might now need a full face mask, but that is another thread.

As far as MMA, I've got 3 new factors to consider:
1. I'm finally seeing a correlation between sleep therapy and the way I feel during the day. Finally!
2. I'm seeing that for me, sleep therapy may never be without daily side effects. (And not to forget, it is already a lifestyle issue for us off-the-grid, outdoorsy types who likes to experience 3rd world countries...)
3. I learned that I am essentially un-insurable with OSA, unless I am covered by an employer. After suffering all year, and paradoxically being unable to work - this realization really shook me up! (I'm SO grateful that I could at least get the ASV treatment underway before my COBRA ran out.)

I already know that MMA will correct my bite - I've got class 2 malocclusion that was only partially compensated by orthodontia. I already have lots of crowns due to molar stress, so maybe it's too late to prevent most of the damage there. Referring to previous comments in this thread - I think it is technically correct to say that I have a cranio-facial abnormality. And no, doctors never pointed it out; however is evident to an orthodontist. And not terribly unusual.

As much as surgery terrifies me, and will deflate my 401k, I'm starting to think it makes sense. This thread has me a bit worried, though. Two different sleep doctors said MMA would take care of my sleep issue. As in, make it go away. They were both pulmonologists. I don't really know how much they base their opinion on the nature of my obstruction. They did say that they consider an OSA person with normal BMI and generally good health to be a candidate for surgery. I later learned that my OSA can be categorized as "hereditary", but they didn't refer to it like that. I asked the ENT that checked me for GERD; she was less sure on surgery, based on very little professional experience with MMA. She did share my skepticism about soft-tissue surgery, which has never been recommended for me anyway. That may be because my tonsils are long gone, and I don't snore.

My primary care doctor said something like "A lot of times these surgery decisions are made when people just decide that they've had enough".

I'm a bit freaked out that both surgery and OSA become more problematic with age. I feel pressured to do this as soon as possible, if I'm going to do it at all.

Well there, I've shared most of my thoughts on this. Not an easy thing to be sure about, is it?

It's a terrible situation to be in. You and 1041 have my sympathy. I will agree again with Patrissimo: if you go into surgery with the mindset that it will cure you of apnea, you're likely to be disappointed. If you expect it to be of some degree of help, you likely won't. It's awful having to make a decision based upon incomplete information, but that's just the way it is.

I would add the following: if you do have an MMA, it's vitally important that you have it done by an experienced doctor. There are MMA horror stories out there, but none of them are from people who had their surgeries performed by the Stanford doctors. This is one area in which you definitely don't want to search for a bargain! I live in the Bay Area and decided relatively quickly that I wanted Dr. Li, but I know there are other experienced people out there.

Regarding sleep apnea being hereditary: I don't know exactly what your doctors meant, but it seems to me to be a complicated issue. As an example: my father, I, and one of my children have small chins. My father snored like a freight train until recently (for some reason, snoring seems to decrease in the elderly) and always woke up in the middle of the night, but he's led a full life and is still going strong at 80. His blood pressure is normal and he doesn't take any non-OTC medications. My child also doesn't sleep as well as his sibling with a large chin, and it's probably affecting his life. But whether or not he'll develop apnea is as of yet undetermined. (We had his tonsils out and have him in braces to extend his jaw.) Genetics can give you a predisposition towards developing sleep apnea, but other factors (stress, etc.) have to play a role.

[SleepingUgly]

We had his tonsils out and have him in braces to extend his jaw

What kind of braces are those? I'm interested for my kid.

[syzygy]

We had his tonsils out and have him in braces to extend his jaw

What kind of braces are those? I'm interested for my kid.

I don't know exactly what kind of braces they are. I know he had an expander in his mouth for a few months before getting the braces. His dentist's web site might have something of interest:

http://paulleedds.com/Treatment/EarlyTreatment.aspx

[SleepingUgly]

I know he had an expander in his mouth for a few months before getting the braces.

The kind of expander with a key to turn?

[lostsheep]

ENTs are not the ones that should be diagnosing GERD; gastroenterologists diagnose GERD.

Are you an authority on that? I don't pretend to be, but it would make sense that gastros are the ones who can best treat primary GERD, with drugs and diet and such. It was my sleep doc who specifically recommended I go to an ENT to be checked for what he calls "silent GERD". Perhaps he is partial to ENT's when dealing with a sleep patient. Regardless, I was glad to have an ENT check me out and to be able to ask her questions about my throat. As it turns out, I wouldn't have much to talk about with a gastro, as my aerophagia is secondary to xPAP, not GERD.

How exactly did they rule out GERD?

She fed a scope through my nose and had a look at the throat tissue. It was a strange experience, but very quick. Before we started, I asked her if she was familiar with the "Silent GERD" diagnosis, and she reassured me that she knew exactly what to look for. She went on to say that a person with GERD has telltale signs of chronic irritation/inflammation at the esophagus opening. She saw very minor irritation with me, and believed it was a recent effect from the first week on ASV and immediate aerophagia symtoms. She did not see any purpose in putting me on anti-acids to treat Silent GERD, so I declined. Then I got the talk about how xPAP can splint the esophagus open in some people, allowing air to go in, while at the same time potentially allowing acid to leak out.

My own concern is that after 6 months of this, I might look like someone with chronic GERD. I hope I can develop some pressure tolerance, but not sure if that is possible.

[lostsheep]

No, it's not. I would expect some significant improvement but not a cure, unless someone experienced looks at your airway and says "It's definitely small only in the direction that MMA expands it". If ASV is able to bring your RERAs close to zero, then it doesn't seem like MMA would give much benefit. I definitely got it because I decided that I'd had enough. If halving your pre-cpap respiratory events seems worthwhile (especially if it lets your events with cpap be much lower), then do it. If you want a complete no-xpap cure, then it seems like MMA is a long shot.

Well, there are two things I can add to that. When I consulted with the surgeon, I mentioned that I thought my jaw was narrow in all directions (looking from the outside), not just the direction he was going to advance it. His reply was that, when they do the jaw advancement, they clinically observe the throat opening in all cross-sectional dimensions. That was a bit surprising to me, too.

The ENT was the first person to look at my throat with the endoscope. I asked her what she saw, and she said your throat is narrow from front to back. OK, thinking along the same lines as you, it seems to me that it would bode well for a jaw advancement surgery. Her observation did agree with the cephalogram previously done by an orthodontist. Agreement is reassuring.

I've thought that maybe I should go to someone like Dr. Li to ask his opinion on surgical prognosis. It would be my second opinion from a surgeon.

[lostsheep]

I would add the following: if you do have an MMA, it's vitally important that you have it done by an experienced doctor. There are MMA horror stories out there, but none of them are from people who had their surgeries performed by the Stanford doctors. This is one area in which you definitely don't want to search for a bargain! I live in the Bay Area and decided relatively quickly that I wanted Dr. Li, but I know there are other experienced people out there.

I was advised something similar by my orthodontist. In my case I would not be going to Dr. Li, as I need the full orthodontal co-treatment. I think Dr. Li just works with your existing bite(?) I consulted with one of the best in the country, though. Big cost.

[lostsheep]

We had his tonsils out and have him in braces to extend his jaw

What kind of braces are those? I'm interested for my kid.

Sleeping Ugly, have you tried googling on orthotropics? Also google on Dr. Mew. I learned quite a bit about it from Dr. Park's teleseminar interviews. He hosted one or two experts in that area.

Here are some links with orthotropic info:
http://www.orthotropics.com/languages/usa/index.html
http://www.facefocused.com/bioorthotrop.html

[tiredintenn]

BTW, after my nasal-throat surgery, for a few weeks, I felt EXCELLENT! I didn't expect a cure, but I thought I was cured. To this day, I don't understand why I felt so good. Was it some medication they gave me post-op (e.g., steroids that I had briefly that affected something else?), placebo effect, contrast effect, ??? People want to feel better, and when they've gone to great expense and had a radical surgery like an MMA, psychologically it's going to be very difficult to say it didn't make a bit of difference. As a relevant aside, I think I am better with my surgery than before my surgery, although certainly not enough. I'm also better with sub-optimal CPAP pressures than no CPAP. But even with all that, I can't perform as I should in my life.

I don't often check this site but I do occasionally look for posts related to UARS so I stumbled upon this thread. I too have UARS. Diagnosed in August 2010. Tried cpap/apap three separate times, two mouthpieces, and various other remedies and still have not overcome my fatigue. Each time i tried cpap, I felt worse than using nothing at all - gave it six to eight weeks each time. I decided to trust my body more than some poorly manufactured machine and I quit pap. I manage ok but continue to seek the magic bullet, which has eluded me for over two years. However, I also had septoplasty/turbinate reduction and I felt great for about a month. Slowly the fatigue returned. I haven't done any of the other surgeries - uppp, hyoid advancement, mma, etc because the soft tissue surgeries just don't work and I'm not willing to saw my face off. Same goes for trach - way too drastic for me. My hope is that sleep doctors will recognize that what works for sleep apnea does not always work for uars and a more effective treatment will be found. Good luck to all and if anyone finds something that works for UARS, please let me know.

[SleepingUgly]

You know what's interesting? I had a tonsillectomy, turbinate reduction, and septoplasty, never expecting anything like a cure, just hoping I'd tolerate CPAP better. Shortly after the surgery, for about a month, I felt 100%. Then my EDS returned, perhaps not to the same degree, but substantially. I've still wondered about that time period... Was it something they gave me in association with the surgery (e.g., steroids after the surgery)? A placebo effect? A contrast effect? I still don't know. Sure wish I could feel like I did back then. It was amazing to not go through each day tired and in a fog, to one degree or another.