NYC A.W.A.K.E. meeting was absolutely amazing tonight!

[jnk]

Sorry to brag about the Manhattan A.W.A.K.E. meeting again, but I just have to.

Tonight's meeting involved a question-and-answer session based on questions from sleep apnea patients in the audience and questions that had been submitted anonymously online beforehand. There were also two very informative presentations from ENT surgeons discussing (you guessed it) sleep apnea surgery.

Dr. Lisa Liberatore gave an excellent overview of present practice parameters for treating OSA with surgery, and Dr. Steven Park gave a presentation summarizing and explaining his holistic, comprehensive approach to treating sleep apnea.

DeVilbiss sponsored the meeting, so one of their sales reps was there along with a rep for the SleepWeaver all-cloth CPAP mask. Both were very nice guys who let me chew their ears off about cpaptalk.com and the need for one of the smaller companies to target self-titrators with some patient software based on what we want, not what DMEs want. They seemed genuinely interested and promised to stop by here. So everybody please treat them nice if they do. I had never seen the IntelliPAP up close and had never seen a SleepWeaver mask either.

Anyone who is not a fan of Dr. Park may want to stop reading my post right here because the rest of my post will be about how well he made his points with his presentation on sleep apnea surgery. Dr. Park has a way of dealing with complicated subjects with amazing clarity in layman's terms, so it was a particular pleasure listening to him.

Dr. Park began by stressing that there is no longer a valid stereotype for how someone who has OSA looks--even young, thin women who do not snore may have it. It can affect all ages and both sexes. And he asserted his belief that UARS is likely to actually be a more widespread problem than sleep apnea, and stated as an aside the interesting point that it seems many UARS sufferers have low blood pressure, in contrast to the high blood pressure so often found in many OSA patients. He pointed to the role of the many forms of inflammation in connection with OSA, mentioning the prevalence of reflux-related, neurological, and hormonal types of inflammation.

One statement I found surprising from him was that he personally doesn't find the Epworth sleepiness scale all that useful in his practice. He mentioned that ridges on the side of the tongue can be a useful tell-tale indicator of obstructive sleep apnea, since it can be the result of a large tongue in a small jaw. If I heard him correctly, he said it had an 80% prediction rate. He also said he personally rarely finds the need to use CAT scans, since he can see what he needs to see well enough with a scope, as far as discerning where specifically in the upper airway the problem is for a patient. He had some great slides and movies of patients' throats as seen with a scope when they were sitting up, lying down, moving their jaw forward, etc.

What impressed me the most was his statement that of the patients referred to him, he finds only five to ten percent, at most, to be good candidates for sleep apnea surgeries. (How many ENT surgeons who are sleep specialists would say THAT out loud in a crowded room full of patients and doctors?) When I asked him for clarification of that statement (I did raise my hand and all), he explained that he finds that 90 to 95 percent have not tried all that they should try FIRST before contemplating surgery for sleep apnea. His statement was this: "You don't jump straight to surgery. Most OSA patients should do all they can to manage their condition without surgery before considering surgery." Oh but if only ALL ENT surgeons were that balanced about their role! Kudos to Dr. Park, I say.

He also made a point of stressing not making the discussion only about the numbers when discussing surgery success, since the role of surgery is to do something second-best for those who, for whatever reason, have not found a way to make the gold-standard treatment, PAP therapy, work for them. (He did acknowledge the role of oral devices for those with mild-to-moderate OSA without overhyping it.) He said that treatment of sleep apnea should be goal-based beyond reducing measured numbers, and he made his point by noting that someone with no symptoms beyond measured numbers may not need treatment, much in the same way that someone with symptoms but low numbers may still need further treatment. He was not discounting the usefulness of the numbers when he said that, but was stressing that the goal should be feeling better and being healthier so that results can be measure beyond simple reduction of RDI. I had never heard it put so clearly, so it made that point click in my head for the first time in that way. It is hard for us self-titrators to keep that in our heads sometimes, I think.

Anyway, as a patient who is fairly new to this stuff, I may have misunderstood some of Dr. Park's more subtle points, so I hope I have not misquoted him too badly with the above. Hopefully, if I have, he or someone else will correct me. But I thought I would share my excitement about the meeting in case it motivates anyone to try to get to one of the future meetings or stimulates anyone's thinking on the subject of sleep apnea and surgery. From what I've read on it, I think Dr. Park's approach is spot on. I admire that even though he is a surgeon, he spends much of his time making sure patients give PAP therapy the full shot and then helps them to do so. I am sure he isn't perfect, no one is, but I still wish more doctors thought like he does and were as active about getting the message out.

jeff

[Muse-Inc]

I am so envious!!!

[DoriC]

Jeff, thanks for bringing the meeting to us,very interesting . I was also struck by Dr. Park's comment about not getting so hung up on numbers. I sometimes forget just how well Mike feels and instead fret about his AHI being a little higher than usual. And I'm glad you watched your manners and raised your hand before you spoke!

[KatieW]

Jeff, thanks for a very interesting report. Very thorough, I feel like I was there.

[rested gal]

Excellent report, Jeff! The A.W.A.K.E. meetings up there sound great...you're lucky to have such good ones.

[OutaSync]

Wow! I just checked my tongue and there were ridges on both sides. I don't think that any doctor who has said, "Stick out your tongue and say, 'Ah' " was looking at my tongue. I fall into that category of thin woman who went undiagnosed for 30 plus years.

Good info, JNK. Thanks for sharing. All the AWAKE meetings that I have been to have been a bomb.

Bev

[Tielman]

One statement I found surprising from him was that he personally doesn't find the Epworth sleepiness scale all that useful in his practice.

I've been wondering about this. My Epworth scale was a 4-5, but I have AHI numbers of >21, and my O2 level went below 78. Personally, I think my body had been compensating from years of apnea.

Thanks again for a great report!

[carbonman]

Sorry to brag about the Manhattan A.W.A.K.E. meeting again, but I just have to.
jeff

......no you're not. It is just another facet of your genetic, God given ability to be irritating.


...that said....

I am envious, also.

.....so, I got all excited reading your most excellent report.

I called MY sleep center and the next meeting is....tonight.

I don't hold out any fantasies that it will be like yours,
but I'll give it another try.

.......and will try not to get myself thrown out.

[sleepguide]

gratified to hear that people who come to the New York City A.W.A.K.E. meetings are getting something out of them. should anyone wish to join the Manhattan A.W.A.K.E. mailing list, they can do so by signing up using the form on http://www.ManhattanAwake.org -- there's also a full calendar of events there for anyone interested.

[sleepguide]

I've also posted the meeting materials to New York City Sleep Apnea Support Group, or http://www.ManhattanAwake.org. So if you want to dig into what happened at last night's meeting, it should be easy to do. Enjoy!

[dsm]

Jeff,

Thanks for a nice concise & informative report on the event.
An interesting read.

DSM

[jnk]

I'm glad you folks enjoyed the report. I just went to the link Sleepguide posted and there is now an audio file, mp3, of Dr. Park's presentation (for free I might add ), so you can judge for yourself whether my "reporting" was accurate. Different points may jump out to you than what jumped out at me.

http://manhattanawake.org/download/13

[GaryG]

Jeff, I'd like to add a few words about Dr. Park from my personal experience with him. I went to see him for a consultation on my deviated septum and enlarged turbinates back in late December as a "holiday" present for myself. First of all, he is the same in person as he is at his seminars. Also he is the same person over the phone as well. He spent about 45 minutes with me for my appointment. I'm usually used to 5-10 minutes with a doctor, so it was very refreshing for him to not only examine me, but to show me the pictures of the septum and turbinates and explain in great detail what this meant. But again, as Jeff mentioned, he is very hesitant to simply operate. Even for a simple procedure like a deviated septum. He gave me a number of suggestions for which based on the results would give me an indication if it was worth pursuing surgery for it. He told me to try individually and together various combinations of nasal strips, Afrin (for no more than 3 days in a row), and a product I hadn't heard of called nozovent. (They sell it all over the web but if you look at http://www.eigusa.com/nozovent.htm you can get a good picture of what it is.). His theory is if these treatments don't help my therapy than it may not be worthwhile to do the surgery.

I was thinking ahead of time that the surgery was a no-brainer in that anything that would make it easier for me to breathe would be worthwhile, but Dr. Park wanted me to see if using these techniques had any effect. And so far I've had inconclusive results.

But my point is he is not over-eager to cut. And its cool as a patient to do one stop shopping for a sleep doc and ENT, rather than shuttle back and forth to multiple docs.

[Muse-Inc]

...http://www.eigusa.com/nozovent.htm...

THAT looks positively painful!!!

[Mac33]

I meet with Dr Park on MLK day a couple of weeks ago. I liked the office setting very aesthetically pleasing. I spent about 45 min with Dr Park and asked every imaginable question and then followed up with more questions thru email.He's a breath of fresh air in answering all questions thoroughly and not rushing you out of the office or ignoring your emails. He did not push surgery and had me tried the AFRIN test for my deviated septum and enlarged turbinates.I'm the one who is pushing surgery and he is brutally honest. I'm on CPAP from September and on the fence on surgery.