so very tired and it isn't getting better

-SWS · Post by **-SWS** » Mon May 04, 2009 2:01 pm

robertmarilyn wrote:Hi Bluesky,

Funny thing is, before I read this, I just wrote a private PM to -SWS thanking him for making me aware of that rare possibility (the trach thing...not that I would consider one unless everything else had been totally ruled out and even then, I reserve the option to opt out). I really do have that pushed way back on the shelf esp after I did some mental and emotional processing of the thought. But actually thinking about the situation really helped me to be prepared for the things I discussed with the new doctor. I was able to go to the appointment with a mental and emotional mind set that allowed us to comfortably talk about some not easy to hear things. But that wasn't the focus of our discussions and because I was able to not be shocked by anything she said, I know she was able to feel comfortable talking very openly with me.

I am really excited about working with this new doctor and I am feeling very positive. -SWS is part of that positive feeling...I could not have made it this far and done so well with the physical problems I have, if I wasn't an ace at pulling the positive from whatever comes my way. My way of feeling positive about things does include a big dose of realism though...it has had to with all the roadblocks I have encountered...otherwise I would have gotten too beat down when reality was way too far from 'rosy thinking'.

I have run marathons, done long distance triathlons, ridden my horses in 100 mile competitions, and three days of 55 miles in a row...for years my self esteem was at rock bottom because I had doctor after doctor telling me nothing was wrong with me and running down my work ethic and thinking my problem would have to be dwelt with my a psychiatrist (which did no good by the way)...now I realize what amazing things I have accomplished with a body that should not have been able to do so much. I didn't give up and I'm not going to give up...I might cry along the way sometimes though

All my running and triathlon accomplishments involved my trying way too hard because I thought I must be a pretty lazy person...after the UPPP, I decided if I got horse I was not going to compete in endurance rides with the 'must win' frame of mind...instead I have a longevity frame of mind for me and my horses...I went from a AAAAAA personality type to a much more laid back way of thinking and this has been very good for me. I really appreciate your help and positive thoughts...I can use all I can get and I do feed off of the good thoughts of others. And even though each of us may not have the same problem, I know I am not alone when so many of you are willing to help and support me. (Oh, and -SWS makes my brain develop new brain cells as I learn the big words he writes)
mar

That's okay. I told Mar in a PM to just throw that highly unlikely trach option right out the window...

But seriously, we often have a very difficult balance of objectives here. We need to provide the right emotional support. But we also need to get all kinds of treatment information out for full consideration. We probably have many more silent readers looking through threads for possible answers---that they can discuss with their doctors--- than we have active participants in each thread.

So it's not uncommon for us to throw all kinds of options out for group consideration. I really hate throwing unpopular options out...

Mar, your residual HI might not be that bad---if there aren't many desaturations and/or arousals associated with them. So that's another thing to look forward to discovering in your upcoming NPSG!

BlueSky72 · Post by **BlueSky72** » Mon May 04, 2009 2:07 pm

-SWS wrote:
BlueSky72 wrote:The kind of anatomy that you mention is extremely rare. Not just very rare, extremely rare.
So do you have an epidemiological percentage to go with that assessment?

BlueSky72 wrote: She may have been a very strong candidate for UPPP, but that does not automatically make her any kind of candidate for a trach.
I don't think anybody in this thread---and certainly not me---implied a default or automatic treatment decision of any kind. Let's not pretend trach was either forced into this discussion as a prime treatment method---or somehow doesn't belong on this message board for yet other hard-pressed readers searching for treatment answers. But I agree there's absolutely no need to belabor the trach treatment option in this thread.

BlueSky72 wrote: SWS, let's focus on supporting Mar on her current journey - in the extremely unlikely event that she might need a trach, we all would be as supportive as we can in that - for now, Mar's challenge is to see if xPAP will work for her.
Better idea yet, let's continue to expect and allow people on this message board to voice their own opinions rather than having their thoughts and words shepherded by well-meaning newcomers.

Ow, I obviously touched a nerve there... I am voicing my opinion with the same right to free speech that you are relying on. You are also relying on the tactic "speaking from authority" by referring to me as a newcomer. My longevity (or lack of it) on a forum does not change the fact that if you can voice one opinion, I can voice a dissenting one. I don't need an "epidemiological percentage" to justify my statement that trachs for OSA are extremely rare - just look around - apart from the doctor you linked to, can you cite any other cases? Millions and millions of people around the world use xPAP for OSA. The number of people having trachs since xPAP became the "treatment of choice" has got to fall into the "extremely rare" category, surely. Knowing the propensity of most doctors to suggest surgeries in general, I doubt that any genuinely appropriate candidates for this procedure need people to publicise its availability. The point (which you seem to be missing) is that Mar has only touched the surface of xPAP and pressure options.

Anyway, I'm enjoying the knowledge and warmth of people here. Thank you and congratulations for being the first person here to prove to me that on every forum,"there is always one".

-SWS · Post by **-SWS** » Mon May 04, 2009 2:31 pm

BlueSky72 wrote: I don't need an "epidemiological percentage" to justify my statement that trachs for OSA are extremely rare - just look around - apart from the doctor you linked to, can you cite any other cases? Millions and millions of people around the world use xPAP for OSA.

The fact is that CPAP, as a gold-standard of treatment, has a success rate of around 40%. And 60% of millions and millions of failed CPAP cases would translate to how many people that actually need to consider other treatment options?

BlueSky72 wrote: The point (which you seem to be missing) is that Mar has only touched the surface of xPAP and pressure options.

You sure seem to have missed page one:

-SWS wrote:I would recommend that you exhaustively continue to chase down CPAP treatment and sleep diagnosis for all that it's worth.

BlueSky72 wrote:Thank you and congratulations for being the first person here to prove to me that on every forum,"there is always one".

That's an awfully big and very broken syllogism, BS72.

robertmarilyn · Post by **robertmarilyn** » Mon May 04, 2009 2:32 pm

-SWS wrote: But seriously, we often have a very difficult balance of objectives here. We need to provide the right emotional support. But we also need to get all kinds of treatment information out for full consideration. We probably have many more silent readers looking through threads for possible answers---that they can discuss with their doctors--- than we have active participants in each thread.
So it's not uncommon for us to throw all kinds of options out for group consideration. I really hate throwing unpopular options out...
Mar, your residual HI might not be that bad---if there aren't many desaturations and/or arousals associated with them. So that's another thing to look forward to discovering in your upcoming NPSG!

I've put some things on a big high far away shelf in the attic of my mind...all is well here

So I'm thinking I'll just let my machine sit here (CPAP, pressure 12, epr 2) for now unless you have any other suggestions. I know I can make things worse by changing the settings but of course that isn't the goal.

My new doctor is very interested in studying the desaturation situation and definitely wants to study my arousal situation. I think my sleep test is going to be interesting and it will be great that a doctor is interested in all the details of what is going on with me. I'm looking forward to it and will be working on getting my sleep cycle moved toward a more standard 10pm bedtime to 6am wakeup time. Three years ago when I had a very messed up thyroid, my sleep cycle got very messed up too...I have about 4 weeks to work on it and improve my sleep hygiene and any other things that could use improving concerning my use of the machine and equipment.

OutaSync · Post by **OutaSync** » Mon May 04, 2009 2:46 pm

[quote="BlueSky72
Anyway, I'm enjoying the knowledge and warmth of people here. Thank you and congratulations for being the first person here to prove to me that on every forum,"there is always one".[/quote]

Bluesky72,

Of the 2891 posts that -SWS has made, I'll bet about 300 of them were trying to help me sort out my various sleep disorders. He puts very careful thought and research into every person's different circumstance, and I am deeply grateful that he came to my rescue when I was at my lowest. I don't think that anybody is recommending a trach, it's just nice to know that there is always that option available as a last resort. I've read Dr. Mack's book and he seems very comfortable with the decision he made to have it done.

I can assure you that -SWS is not the "one".

BlueSky72 · Post by **BlueSky72** » Mon May 04, 2009 3:02 pm

That 40% statistic is as old as the hills. And irrelevant because non-industry sponsored research has found that with appropriate follow-up support, the success rate is more like 85% - importantly, a lower success rate applies to the unfortunate people whose substandard DMEs drop off a machine in a box and leave them to it. The 40% statistic has hung around because it came out in the early years, when machines and masks were not at all user-friendly or appropriate. Many of the people who don't strike it lucky the first time around (with their machine in a box) go online for information and find their solutions that way. Some give up, and end up trying again in a couple of years. Others give up, and sooner or later die from an OSA-related stroke, car crash or suicide.

My main point is that many more people need to get xPAP right than need to know the details of a tracheostomy - which almost all of them will not need, because their airway is amenable to positive pressure support.

I have no doubt that someone whose airway is absolutely not amenable to some form of xPAP (ie those who are appropriate for a trach) can get access to the information they need without raising the issue to people who are just starting out.

We could split hairs about whose interpretation of the point(s) is more robust, but I have a finite amount of time today to get things done before my fatigue takes over. I don't intend to use any more of that time in this game. I don't deny that you have a lot of knowledge, but it's unnecessary to use big words to impress people with. Analytical skill shows in the cogency of your argument, not in the language you use to express it.

BlueSky72 · Post by **BlueSky72** » Mon May 04, 2009 3:23 pm

OutaSync wrote:[quote="BlueSky72
Anyway, I'm enjoying the knowledge and warmth of people here. Thank you and congratulations for being the first person here to prove to me that on every forum,"there is always one".

Bluesky72,

Of the 2891 posts that -SWS has made, I'll bet about 300 of them were trying to help me sort out my various sleep disorders. He puts very careful thought and research into every person's different circumstance, and I am deeply grateful that he came to my rescue when I was at my lowest. I don't think that anybody is recommending a trach, it's just nice to know that there is always that option available as a last resort. I've read Dr. Mack's book and he seems very comfortable with the decision he made to have it done.

I can assure you that -SWS is not the "one".[/quote]

Hi Outasync, thanks for that. Before I decided to challenge SWS's comments, I knew I was taking a risk that he might take offence and challenge me, and that's ok. As he said about his own comments, we're allowed to express an opinion. It's not my place to speak for Mar, you or anyone - I am the one who took issue with him talking about a trach, when xPAP has only just been started. I learned from this thread why a post-UPPP patient can never have success with an APAP that responds to snore and flow limitation. That alone is reason enough to suspect that other xPAP options must be tried. I never said SWS recommended a trach, he merely raised the issue. There are people "out there" who would be very disheartened to learn that if their xPAP doesn't work they might need a trach. I think it is more prudent, and fairer to them, to acknowledge the extreme unlikelihood of that, except for the few cases when the airway has a fixed obstruction. A titration study would show if that was the case. Such a caveat only came out later on, and it would have been so much better given at the start.

I'm very happy that you (and no doubt others) found SWS so thoughtful and supportive. Readers take each post on its merits and can't know the history of a person on a forum. There were many ways he could have responded to my polite challenge. Unfortunately he was sensitive and chose to be aggressive (and other things which I will hold back on... this is starting to get out of hand as it is). Perhaps the test of a person is not how they are with a willing audience but how they deal with constructive criticism. It takes guts to resist the temptation to use someone's newness against them. However genuine they are, testimonials such as yours cannot change my experience of the way he acted towards me. Like other things, this remains, my opinion. But I am truly pleased that you received such excellent help.

Now, as you know, I have a day in the "real world" to get on with (I'm in a different time zone). I feel my best in the morning, so Tuesday, here we come!

-SWS · Post by **-SWS** » Mon May 04, 2009 4:37 pm

BlueSky72 wrote:That 40% statistic is as old as the hills. And irrelevant because non-industry sponsored research has found that with appropriate follow-up support, the success rate is more like 85% -

That 85% projection figure is famous from a 2002 6-month regression analysis suggesting that CPAP compliance might achieve 85% if... But there are also even more recent studies suggesting achievable compliance might be greater than 70% if... So those optimistic figures are treatment projections that still manage to leave around 15% to 30% non-compliance failure rates across millions and millions as the best-case scenario.

Add those best-case hefty percentages across "millions and millions" to the various failure sub-rates having absolutely nothing to do with basic compliance... And you still get massive numbers of people who deserve to hear about all treatment options----versus having any of those options suppressed in discussion as you so vehemently argue in favor of directly above.

BlueSky72 wrote:Perhaps the test of a person is not how they are with a willing audience but how they deal with constructive criticism. It takes guts to resist the temptation to use someone's newness against them.

I honestly didn't perceive your initial comments as criticism. Rather, this sounds like a suggested way of thinking for Mar:

BlueSky72 wrote:If I were you, I wouldn't give a trach one more moment's thought....there is sure to be an xPAP solution that will make you feel the best you can.

(supported by what can only be categorized as either a generalized falsehood or unproven specific)

And this sounds like suggested speech and behavior for me:

BlueSky72 wrote:SWS, let's focus on supporting Mar on her current journey - in the extremely unlikely event that she might need a trach, we all would be as supportive as we can in that - for now, Mar's challenge is to see if xPAP will work for her.

My comment about your newness had absolutely nothing to do with your newness to any relevant subject matter at hand. Rather, it spoke purely of a stranger who shows up one day, and starts actively shepherding how other people should think and speak. That's altogether different than the norm for this board---which is to discuss the treatment points at hand, rather than to actively work on guiding the thought and speech of others---or attacking the vocabulary mannerisms of others. And all that, in turn, is very different than your claim of merely sharing opposing opinions about the trach topic itself.

Diverse opinions on this board are very welcome and encouraged. Even the moderators on this board take a dim view of suppressing discussions.

Muffy · Post by **Muffy** » Mon May 04, 2009 6:18 pm

Well, first of all, the statement that

Mike wrote:a tracheostomy is 100% effective in treating sleep apnea -- the AHI will zero out. It is a sleep apnea cure.

in That New Place is not true:

Not Even Close

Muffy

-SWS · Post by **-SWS** » Mon May 04, 2009 6:25 pm

Agreed there, Muffy. And I wouldn't even begin to suggest a trach is either a perfect or even near-ideal treatment.

But you also have to really wonder how many failed CPAP cases resulted in non-treatment deaths that might have been otherwise long, fruitful lives---had trach simply been given full consideration as a fallback method.

And there are yet other fallback treatment methods that I personally think should be evaluated before trach.

Muffy · Post by **Muffy** » Mon May 04, 2009 6:56 pm

-SWS wrote:But you also have to really wonder how many failed CPAP cases resulted in non-treatment deaths that might have been otherwise long, fruitful lives had trach been given full consideration.

What I would want to consider would be the likelihood of a CPAP non-complier agreeing to tracheostomy even if they did understand what's at stake (prior to about age 50, guys are immortal, anyway).

Clearly, there are numerous considerations here. If there is a central component, you really have to think carefully about what's gonna happen post procedure.

Checking demographics in the above reference, there's some major kilos in some of those folk, so attacking that could pay great dividends.

But I'll tell ya, if you're morbidly obese and going to surgery (bariatric, upper airway, or whatever), make sure your anesthesia guy is sharp.

Muffy

robertmarilyn · Post by **robertmarilyn** » Tue May 05, 2009 3:06 pm

Muffy wrote:But I'll tell ya, if you're morbidly obese and going to surgery (bariatric, upper airway, or whatever), make sure your anesthesia guy is sharp.
Muffy

Hi Muffy,

Thanks for all your thoughts! I'm not obese at all but when I had an upper endoscopy recently (and I heard the nurse stressing that it was done under light sedation and not anesthesia), I had spoken to my doctor and the nurses about my sleep apnea. They and the techs took great care to monitor my breathing during the procedure and then in the recovery room. They kept me hooked up to monitors and I had one nurse who stayed with me until I was allowed to go home. They seemed to think the situation merited extra attention and I appreciated their concern.

mar

SaltLakeJan · Post by **SaltLakeJan** » Tue May 05, 2009 10:46 pm

Hi Mar,
I just read your last post about your endoscopy. That is another similiarity. Mine was a month ago. The aids and doctor were so tender and caring. I had light sedation - but didn't feel uncomfortable. I have known him for years, and he has an excellent reputation - he really cares for his patients.

Well today, I got some good news and some disappointed me. He will take me as a patient, he said I present with a complex situation. He has scheduled a titration. He asked for the details of my earliest nasal surgery. The one I thought was too old to interest him. He groaned when I told him I just reread the surgical report the day before and I recalled the worlds "Turbinates and all removed "were in the same sentence. I have a nasal infection that I wasn't aware of. He said he recommends a Fisher & Paykel machine and humidifier for my nares.

I checked the computer and e-mailed Cpap. F&P does have some softwear, but reserves it for clinicians and it may not even be sold available in the USA, Also as the doctor was sorting through my records, he looked at my LCD Data Records, and asked what is that?? Meanwhile, Dana, my daughter was transmitting a signal we had pre-arranged. Mother, "Don't address that now. You can fight that battle another day"

I felt he was competent, & caring and had a subtle sense of humor. Dana is going to ask her husband to change to him as his sleep doctor. She said she has visited first, then the second sleep doctors he has had - both incompetent.

I cannot tell you how much you helped me last night. I thought to myself - "Miracle of Miracles, I have a sister - for a day. I have two daughters, they show support for each other in similar ways. Thanks Mar.

I have posted as much as I can recall. We were in his office for just over two hours. Jan

ozij · Post by **ozij** » Wed May 06, 2009 12:16 am

-SWS wrote: My comment about your newness had absolutely nothing to do with your newness to any relevant subject matter at hand. Rather, it spoke purely of a stranger who shows up one day, and starts actively shepherding how other people should think and speak. That's altogether different than the norm for this board---which is to discuss the treatment points at hand, rather than to actively work on guiding the thought and speech of others---or attacking the vocabulary mannerisms of others. And all that, in turn, is very different than your claim of merely sharing opposing opinions about the trach topic itself.

Diverse opinions on this board are very welcome and encouraged. Even the moderators on this board take a dim view of suppressing discussions.

Very very well said, -SWS.

BlueSky72 wrote: There are people "out there" who would be very disheartened to learn that if their xPAP doesn't work they might need a trach.

There are people "out there" who are very busy banishing their own fears and shepherding their own thoughts. They can be terribly disconcerted when they meet frightening facts uncorralled in other people's words. They will attempt to do to the thoughts of others exactly what they do to their own. When the fear is great, they can't help it.

It's a more refined way of shooting messengers.

robertmarilyn wrote:I've put some things on a big high far away shelf in the attic of my mind...all is well here

So I'm thinking I'll just let my machine sit here (CPAP, pressure 12, epr 2) for now unless you have any other suggestions. I know I can make things worse by changing the settings but of course that isn't the goal.

Mar, if you can tolerate it, I would nudge the 12 up slightly - Resmeds let you do it in 0.2 increments. My reasoning is the your sleep is still interrupted rather frequently, albeit by much shorter events, and possibly just a tiny bit more pressure will shorten - or avoid some of those apneas, which would improve you sleep oxygenation. Banishing more apneas is good, if it can be achieved.
Banishing apneas, like banishing thoughts, needs consistent vigilance and effort.... If 12 is not enough. 12.2 may do it
O.

robertmarilyn · Post by **robertmarilyn** » Wed May 06, 2009 12:34 am

SaltLakeJan wrote:Hi Mar,
I just read your last post about your endoscopy. That is another similiarity. Mine was a month ago. The aids and doctor were so tender and caring. I had light sedation - but didn't feel uncomfortable. I have known him for years, and he has an excellent reputation - he really cares for his patients.

There are some really nice folks in this world and I'm thankful I get to run into so many of them.

Well today, I got some good news and some disappointed me. He will take me as a patient, he said I present with a complex situation. He has scheduled a titration. He asked for the details of my earliest nasal surgery. The one I thought was too old to interest him. He groaned when I told him I just reread the surgical report the day before and I recalled the worlds "Turbinates and all removed "were in the same sentence. I have a nasal infection that I wasn't aware of. He said he recommends a Fisher & Paykel machine and humidifier for my nares.

I don't know much at all about "turbinates and all" and what their removal means but others might know what would make him groan about them being removed...I know I've read about folks on here having some form of turbinate surgery and that it helped them...hopefully someone will chime in and explain what all that means to us. I do think that it is great to hear you have a nasal infection...not because nasal infections are good, but now that you know you have one, it can be treated and once you are over it, you should notice feeling some better (or maybe a lot...lets shoot for a lot)

I checked the computer and e-mailed Cpap. F&P does have some softwear, but reserves it for clinicians and it may not even be sold available in the USA, Also as the doctor was sorting through my records, he looked at my LCD Data Records, and asked what is that?? Meanwhile, Dana, my daughter was transmitting a signal we had pre-arranged. Mother, "Don't address that now. You can fight that battle another day"

I know nothing about those machines but there will be folks here that will have knowledge of them. Starting tomorrow (we must get our sleep first), either ask about them in your thread or else start a new thread (with a link to your main thread) and ask about them because you want to have a good idea what their capabilities are and why the doctor prefers the particular machine he mentioned over others...I'm glad your daughter could be with you...because I could discuss my doctor's visit with my husband, who was there with me, afterward, it helped me retain a lot of information that I might have forgotten if I had gone alone.

I felt he was competent, & caring and had a subtle sense of humor. Dana is going to ask her husband to change to him as his sleep doctor. She said she has visited first, then the second sleep doctors he has had - both incompetent.

Then he sounds like a keeper...hopefully he will be able to see and understand your need to be as informed and involved in your treatment and choices as we think we should be. I look forward to hearing what others have to input about your previous nasal surgery and how it may be impacting your treatment options now and also the machine brand/type that the doctor has in mind. I know that my new doctor wants to try at least one type of Fisher & Paykel mask on me that she feels might give me a good fit so that I'll have more available masks that fit me (particularly a full face mask in case I need one during an illness where my sinuses are stuffed up).

I cannot tell you how much you helped me last night. I thought to myself - "Miracle of Miracles, I have a sister - for a day. I have two daughters, they show support for each other in similar ways. Thanks Mar.

You are very welcome and thank you for the sweet words...if our supporting and helping each other can allow us to go into the medical professionals office feeling able to deal with the visit as calmly and level headedly as possible, we are all going to benefit. You guys help me and I want to be able to do the same for you and others.

I have posted as much as I can recall. We were in his office for just over two hours. Jan

Two hours...that has to have been a very thorough appointment...I just came to this thread by a notice in my email that you had posted here so I haven't checked the rest of the board...if you haven't posted about the visit in your thread, do so tomorrow, when you have time. I'd like to hear what others can offer concerning the choice of machine and the "turbine and all" comment. If you would be better off with a different machine, then you have time to learn which one and why and prepare to present your case to the doctor, if necessary...it could be though, that he will be willing to let you know the type of machine he thinks that you need and the pressure range but will be willing to allow you to go out and get it without pressuring (ha ha an XPAP pun) you to get the specific machine he had in mind...the more we understand why he may be focusing on a specific machine, the better prepared you can be to speak with him about it.

I know that my internal medicine doctor seems to really like Resmeds and my new sleep doctor told me she knew she preferred them. I think it is the brand of machine my IM doctor uses herself and it works well for her. So she has that built in bias...because of her own experience.

mar

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