Expert Interview: Dr. Avram Gold

roster wrote:But then the more important question, on which you did not report, is what does the doctor propose as an alternative?

socknitster wrote:I would say that when he was referring to the mask issue, he was specifically referring to UARS patients.

Actually, to the best of my ability to type and listen simultaneously, what he said was that it is not effective for UARS or for OSA. This is what I got down:

"My own strong belief is that FFM is not an effective treatment for sleep apnea or UARS. A little complicated to give a verbal explanation. When CPAP given by FFM there is pressure in front of tongue and behind tongue, and most important job of CPAP is to move tongue and soft palate forward and not applied to mouth. If using FFM, good chance not adequately treated. What do with patient who can't breathe through nose? Send them to ENT who will fix their nasal breathing with submucosal resection of turbinates or septum, or oral mandibular advancement device from dentist who does a good job making them."

I'm sure Roster will listen to the telecast and correct me if I got it down wrong. Or more likely, he'll attack me again for what Dr. Gold said (It's OK, Dr. Gold, I'm used to this nonsense.)

SleepingUgly wrote:tee hee hee!

Less someone think otherwise of you, let me say you are surely not expressing glee at the idea (mistaken idea) that the population of full face mask users is receiving ineffective therapy!

No, I was teasing you that a well-known, reputable, Hopkins-trained pulmonologist and researcher would disagree with you. I had no idea you were this close-minded and ferociously defensive of your FFM, or I never would have teased you about it.

And I know someone of your character will not do a big disservice to newbies who mouthbreathe/leak by going on a campaign in the forum of discouraging them about the use of a FFM.

Sorry you can't get your FFM to work and good luck with keeping your mouth shut while using your nasal interface.

Are you suggesting that I am on a self-serving campaign to blackball full face masks, at whatever cost to others, because I have a personal grudge against them, rather than that I am recounting what Dr. Gold said?!

I'm not campaigning for any side. If someone were to ask my opinion, I will simply say: "You can listen to Roster or you can listen to Dr. Gold. You choose."

Personally I choose to make decisions based on as much good information as possible, which means that if I could not breathe through my nose, I would be thinking hard at this point about undergoing a nasal surgery so I could, particularly in light of the number of other articles I've read on the subject. But that's just me. Some people make decisions and then cite the fact that they do it as evidence that it's the best practice.

Dr. Barry Krakow's series of videos on nasal breathing.

http://sleeptreatment.com/allergy-video-series

Pay special attention to "non allergic rhinitis" - to the very end.

http://sleeptreatment.com/allergy-video-series?start=3

socknitster wrote: Before your feathers get all afluff, I'd like to say that you should take a listen.

I will take a listen when time allows and I do agree with everything in your post.

SleepingUgly wrote: If someone were to ask my opinion, I will simply say: "You can listen to Roster or you can listen to Dr. Gold."

What would they do differently? I do not see the contradiction.

I will have to listen to the interview unless you can explain what the two sides are:

SleepingUgly wrote:I'm not campaigning for any side.

From what I see posted here, there is no contradiction between Dr. Gold's opinion and mine. There is only one side. We both agree that all practical steps, including nasal surgery, should be taken to achieve maximum nasal breathing. I have had turbinate reduction and resectioning and have been a big encourager on the forum for others to do this. I also post frequently about controlling nasal congestion to avoid mouthbreathing.

Also, I have long maintained that CPAP is a primitive treatment that just doesn't work for maybe 75% of patients (search and you can find several threads where I make this claim). You don't see me writing about this very often because I strongly believe this forum exists to encourage, not discourage, new patients to embrace CPAP. Surely you have seen the many testimonials from members here who would have given up had they not had the positive support.

If you check that thread on small jaws you will see I greatly encouraged socksnitster to pursue orthodontics because I am fully aware that CPAP is not effective for many people.

I can write all day about the problems I still have with my own CPAP therapy. But I rarely do that because I know many people come here on the edge of failure and a small push in the wrong direction will make them failures.

In fact there is another treatment that I prefer over CPAP. You just don't see me writing about it because I know very few doctors will prescribe it and it would be counterproductive to taut it here while criticizing CPAP.

So you can tell new patients to avoid FFMs and I will continue to tell them to use FFMs if they do any mouthbreathing/leaking. You can tell new patients how primitive and ineffective CPAP therapy is and I will continue to encourage them to get the most out of it they can. But I hope you won't.

roster wrote:So you can tell new patients to avoid FFMs and I will continue to tell them to use FFMs if they do any mouthbreathing/leaking. You can tell new patients how primitive and ineffective CPAP therapy is and I will continue to encourage them to get the most out of it they can. But I hope you won't.

I never have before, so I doubt if I'll start now.

I came to my own conclusions that I think, in some cases, doctors and DMEs rush patients into full face masks too quickly, without an adequate trial of nasal interfaces. That happened to me. I was moved from pillows to FFMs without ever trying nasal masks. If for no other reason than it's harder for many to get a good seal on a FFM, and because nasal breathing is ideal, I don't think folks should abandon nasal interfaces before they've exhausted their options. Dr. Gold's comments have bolstered that opinion. Anecdotally, it seems to work for some people, so I probably wouldn't go so far as he does to say that FFMs are not effective. But I also acknowledge that he has waaaaaay more experience than I do, and if he says that it's a common culprit in symptoms not improving, I believe him. What this means to me is that I'm going to stop diddling around with the Quattro FX and concentrate on the Activa LT now that I'm back on nasal steroids and can breathe through my nose.

SleepingUgly wrote:I never have before, so I doubt if I'll start now.

I came to my own conclusions that I think, in some cases, doctors and DMEs rush patients into full face masks too quickly, without an adequate trial of nasal interfaces. That happened to me. I was moved from pillows to FFMs without ever trying nasal masks. If for no other reason than it's harder for many to get a good seal on a FFM, and because nasal breathing is ideal, I don't think folks should abandon nasal interfaces before they've exhausted their options. Dr. Gold's comments have bolstered that opinion. Anecdotally, it seems to work for some people, so I probably wouldn't go so far as he does to say that FFMs are not effective. But I also acknowledge that he has waaaaaay more experience than I do, and if he says that it's a common culprit in symptoms not improving, I believe him. What this means to me is that I'm going to stop diddling around with the Quattro FX and concentrate on the Activa LT now that I'm back on nasal steroids and can breathe through my nose.

OK, I think we are in about 98% agreement. Also, I have no concerns about you making decisions for your own therapy because you have knowledge and drive.

My biggest concern is with patients' failure to understand they are likely getting poor therapy while using a nasal interface and mouthbreathing/leaking. I could complain their doctors have not told them, but there are plenty of resources for education and there is this concept called "personal responsibility".

SleepingUgly wrote: I don't think folks should abandon nasal interfaces before they've exhausted their options.

As long as they understand that their CPAP therapy is not working properly until mouthbreathing is resolved. I believe a good segment of the CPAP dropouts were mouthbreathing with a nasal interface and dropped out because they were feeling even worse using CPAP than using nothing.

SleepingUgly wrote:But I also acknowledge that he has waaaaaay more experience than I do

Maybe more experience, but does he have experience as a sleep apnea or UARS patient? Does he have experience in your body dealing with your particular condition? You and the rest of the forum members have some experience that he cannot have.

I'm glad you two communicated and realized you really are on common ground. We all have to remember (in the same breath that we use our iPhones to check email, get a map and count calories) that sleep medicine IS still in it's infancy. It IS still primitive. Hopefully that will change and soon.

I agree that we have to really encourage newcomers. CPAP isn't perfect. I have stuck with it unfailingly for 4 years despite the fact that I still feel like crap. Why? Because I feel even worse without it. Over the years I have tried sleeping without it occasionally and it wasn't pretty. If I didn't have a stubborn personality, though, I likely wouldn't still be using it. It takes real determination and a strong desire to recover your wellness and wellbeing to stick to it.

It behooves us to listen to any expert with vast clinical experience like Dr. Gold. He may not be an OSA sufferer (how would I know?), but he clearly cares. He has devoted his professional life to researching it. With all the choices available to someone choosing a specialty, one would have to care a great deal about getting it right and his commitment shows in his language and tone.

On a related matter, I was reading an abstract from a professional journal not terribly long ago and something moved me to contact the researcher personally since the email address was published for all the world to see. I asked the researcher about his research and then queried why we don't hear more recommendations for orthodontia as a cure for sleep apnea? His reply was that it was well-known to be a highly effective treatment and then gave detailed info about types of ortho treatment modalities. Personally, I've done extensive research about this and while the little I found convinced ME that it should work, I hardly had the impression that it is common knowledge that it is a clear cut solution. Until Rooster brought it up, it was not on my personal radar.

Perhaps it is the expense of orthodontia that is preventing it from being offered as a viable alternative, and possibly the length of time it takes. Personally I cannot comprehend that. My health and well being are second in my priority only to that of my children and spouse. When I told my husband I wanted to do this, he shuddered at the cost but agreed it would be worth it if it would give me my former vitality back (or even a large percentage of it--I used to be an intense, vibrant, vital person and I would now settle for interesting or eccentric). I would find a way. I would go in debt to restore my health. Lots of things are expensive. Is my health worth less than a car? And what is the cost of being a patient, when one sets aside the medical bills themselves? What is the cost to a marriage when one spouse is chronically ill, the cost to the children who don't get the parent they deserve, the cost on a person's life when it is prematurely shortened by metabolic syndrome?

Doctors Park and Gold both commented that they could tell by looking in a patient's mouth what their quality of life was like just by the size and shape of their dental arches. If it is common knowledge for these doctors, it needs to be made common knowledge for pediatric dentists and pediatricians alike. If we caught all the children before they start down the path to illness, we would truly be doing good in the world.

Ok, enough rant for one day, LOL!

Jen

socknitster wrote: ... I asked the researcher about his research and then queried why we don't hear more recommendations for orthodontia as a cure for sleep apnea? His reply was that it was well-known to be a highly effective treatment and then gave detailed info about types of ortho treatment modalities. Until Rooster brought it up, it was not on my personal radar.

Perhaps it is the expense of orthodontia that is preventing it from being offered as a viable alternative, and possibly the length of time it takes. If it is common knowledge for these doctors, it needs to be made common knowledge for pediatric dentists and pediatricians alike. If we caught all the children before they start down the path to illness, we would truly be doing good in the world.

As far as SDB goes, the dental profession decided to shine their spotlight on mandibular advancement devices in the last few years. If people get treated effectively and are compliant longterm with MADs, that is a good thing.

However, I suspect that is not the case in general. This is doubly unfortunate if it is pulling dental resources away from orthodontia as cure and prevention of SDB.

socknitster wrote:Doctors Park and Gold both commented that they could tell by looking in a patient's mouth what their quality of life was like just by the size and shape of their dental arches. If it is common knowledge for these doctors, it needs to be made common knowledge for pediatric dentists and pediatricians alike. If we caught all the children before they start down the path to illness, we would truly be doing good in the world.

This needs to be common knowledge for EVERY doctor! I'm a classic case: 8 teeth pulled, braces, and it all started when I was in fourth grade. Before orthodontia, my front teeth were so bucked I couldn't really bite anything and chewing was almost impossible. Several teeth were completely covered by other teeth and I also had "fangs" that stuck out almost as far as my front teeth. Of course, this knowledge wasn't available then, but I may have been diagnosed years sooner if doctors in general knew about this.

More importantly, how many people with OSA are not yet being diagnosed and suffering? If this screening is as accurate as they say, then it makes it easier for GPs to put together the facial structure with the symptoms and refer patients for a sleep study, instead of just treating the symptoms of fatigue, etc. but remaining unaware of the potential underlying cause.

Weezy

There is no accurate screening for OSA by looking in someone's mouth.

Right or wrong, I'm going with what works for me.
I enjoyed the freedom of the Swift FX mask, and I may try it again.
The Polident got kinda old, though.

SleepingUgly wrote:There is no accurate screening for OSA by looking in someone's mouth.

I'll have to disagree with you. There have been studies that show that scalloped tongue is an accurate predicter of OSA. Scalloped tongue is a hallmark of a too small mouth and a couple other ailments, but primarily associated with OSA. Here is just one study:

http://emedicine.medscape.com/article/870192-overview. Go about 1/3 down under the heading "physical.". It goes into detail about what this means. It is basically the same info related by Drs. Gold and Park, just worded differently and more detail.

And some pics for your viewing pleasure:

http://www.erikamasondds.com/sleep-apnea.html

socknitster wrote:There have been studies that show that scalloped tongue is an accurate predicter of OSA.

If you come across a study where they do NPSGs on patients with scalloped tongues and without, that would be very interesting.

Here is a Chinese viewpoint on scalloped tongues:

http://www.associatedcontent.com/articl ... tml?cat=70[/quote]

Yes, I find Traditional Chinese Medicine to be fascinating. I don't think it contradicts the idea that it is often elated to OSA, though. What Chinese doctors have learned through the centuries is simply amazing. I believe there is a lot Western medicine could learn, if minds could just open enough.

At least one study has shown that acupuncture can reduce AHI. It's funny what people choose to put resources into studying. There is no way there are enough acupunturists out there to keep OSA sufferers well acupuntured, but the money and time was spent. Too bad more research isn't put into some real and lasting treatments.

Some time ago we talked about this scallop tongue thing extensively on this forum, i think, and quite a few people spoke up and said they had scalloped tongues, once they looked. I was surprised because I hadn't ever noticed it before I looked.

I can certainly stand to move my chi around more. I took an intense chi gong class last fall. It was so intricate I couldn't remember any of the moves to practice at home. I need to go back and do more because in the short term it was very helpful for me. But I need to find one that I can practice every day at home. Maybe a video.

Jen

"According to TCM, a scalloped tongue means there is a deficiency of qi or yang in the body. Qi (pronounced "chi") and yang are responsible for smooth and correct movement as well as holding the organ in proper shape. If deficient in qi and yang, the tongue cannot hold its proper firm shape, as well as becoming weaker. The overall tongue form then relaxes to a bulging shape and does not have enough energy to avoid being pressed against the teeth, resulting in teeth marks. Also, a swollen tongue can also due to excess of dampness accumulated in the body."

So, that's what's wrong with me. I have a qi deficiency.

Someone pm'd me to ask me how I found my orthodontist. The following was my reply:

viewtopic.php?f=1&t=53983

This is a thread where I discuss this at length. You should find most of the answers to your questions there.

Long story short, the kind of orthodontist needed is a NON-EXTRACTION ORTHODONTIST who uses SELF-LIGATING braces. Basically, this type of ortho does the opposite of traditional dentistry. Traditional dentristry pulls teeth to make them all fit and then uses brackets to pull the teeth in, effectively making the mouth smaller in total volume. A non extraction orthodontist rarely, if ever, pulls a tooth and uses self-ligating brackets to move the teeth outward, effectively making oral volume larger, the arches wider from molar to molar and the smile wider with no dark patches at the corners of your smile--ie a toothy grin. Another type of dentist that works to achieve the same goal, is a functional orthodontist who uses retainers that push from the inside of the mouth out. My orthodontist does both methods but said my mouth was too small for functional orthodontics--my tongue is already too cramped in a small space.

I did several extensive searches to find my Orthodontist, and I believe I discuss it in the thread I link to above. Damon system braces are a type of self-ligating braces. The manufacturer has a website and I searched for dentists that use them in my state. There is an association for functional orthodontics and I searched on their website for local orthos also. Also, I think there may be an association for non-extraction orthos that I searched. I found a list of about 10 within a 1 hour driving distance and went to their websites to review their credentials then made a list of 3 that I felt were the best and made appointments. The one I thought was the most qualified was the 1st appointment I went to and I liked him and his staff so I cancelled the other two.

He is always busy (a good sign) and he concentrates on adults. I've seen a woman in her late 60's to early 70's there getting treatment, as well as children and teens and other adults. He was very honest with me about what he could achieve and what the limitations would be. It will take about 2 years from beginning to end, though I'm currently a bit ahead of schedule.

BTW--in terms of numbers from my CPAP, I always have an AHI of 2 or less. Usually it's less than 1 and I'm 4 years in and still not better, which is why I'm looking outside the box. I really think there is something to the UARS and I'm going to be tested for that. But hopefully between the tonsillectomy and the braces I will be cured in a couple of years.


Jen