POLL: Top problems in U.S. in diagnosis & treatment of OSA

[jnk]

Select all ten, or just one, or however many you feel are real problems today in the U.S.

I am not trying to exclude those outside the U.S., so feel free to vote no matter what country you live in. I chose to limit the target of the poll to one country in order to give the observations more focus, and therefore possibly more meaning--if such nonscientific polls even have meanings.

Also feel free to post other problems that the poll does not list or address or to attack the poll outright. This is, after all, an Internet forum!

[jimnsc]

IMO none of the parties you deal with (sleep center, sleep doctor, equipment manufacturers, etc.) are as helpful as they should be for new patients. If it weren't for forums like this one even more OSAers would store their equipment in a closet and give up. This venue is where you get your help on the condition, the equipment,and methods to try to reach objective AHI's. My DME is great and from what I read here that is the exception rather than the rule. It was imperative that I be tested for OSA but it took almost three weeks after I was tested to learn I had it (inexcusable). The sleep center was clean, well staffed and helpful but it was a trying experience because the only helpful info furnished ln advance of the study by them was what time to be there. No one told me ahead of time I might like to bring a sleep aid because I would be uncomfortable due to all the wire connections to my body.

Most involved cared more about my insurance information and my money than ensuring I knew how to use what I had. With that I'll hush except to say thank you to all who have offered their advice when I posed the questions.

[carbonman]

jnk, you poll create'n varmit ....
I'd slap leather w/you on that dadgum poll....
but...... dognabit , I just can't see anything wrong w/it.
...and we sure have been in a need around here
of a good poll to pick apart.
Bless your heart for try'n.

I'd have to vote for every one......but, the first choice
being my big grip....see'n as how that's what prevented
my diag. for so many years.

[Janknitz]

I think they are all issues, but I left some out because they are not the MAJOR reasons (top problems) for problems in the US. I picked the biggies.

[DennisG]

I believe that one big problem with the diagnosis side is that a lot of people who have OSA or may have OSA do not know what symptoms to look for and when to ask their doctor about the problem. Before I was diagnosed, I did not even think I had a problem other than snoring. I thought I slept well and my sleepy afternoon and evening episodes were normal. Once my wife forced me to talk to my doctor about my snoring, he sent me down the OSA evaluation and treatment road. You have identified some huge problems that I experienced in my journey, particularly items 2, 3 and 4.

I have talked to several people who I think may have OSA and they all have been in complete denial that they have a problem and don't even want to talk to their doctor about the issue.

Unfortunately, I think OSA is somewhat like high blood pressure in that symptoms are not always very obvious and if you ignore it, a lot of damage can be done.

I am glad I got it figured out before something bad happened and I now understand what poor sleep I was getting before treatment.

Just my 2 cents worth...
Dennis

[rested gal]

I marked three things, but this one would cover what I think is the #1 reason for problems during treatment:

durable medical equipment companies are not being helpful to patients

And where too many DMEs are least helpful to patients (imho) is with mask issues. Finding a comfortable mask a person can actually SLEEP in is the main key to being able to "do" CPAP. Not finding a mask comfortable enough to sleep in is probably the main reason for CPAP dropouts.

I don't think many DMEs are willing to let people try an unlimited number of masks at home...until one that suits them is found.

[jnk]

This venue is where you get your help on the condition,

This place has been a big help to me, for sure.

the first choice

Yep. I think that would be number one for me, too. Then the DME thing.

I picked the biggies.

Thanks, Janknitz.

I believe that one big problem with the diagnosis side is that a lot of people who have OSA or may have OSA do not know what symptoms to look for and when to ask their doctor about the problem.

Good point. The public needs to be educated. I wish medical associations were doing more of that, since few docs seem to respect that from the manufacturing associations, it seems to me.

I don't think many DMEs are willing to let people try an unlimited number of masks at home...until one that suits them is found.

That is a shame. As I understand it, don't the mask manufacturers cover it if a patient can't make a particular mask work within 30 days, so that it doesn't cost the brick-and-mortar DME a dime to let the patient try another mask? If so, every mask sold by them should have a card explaining that policy in big bold red letters, and that card should be included prominently in the mask's packaging from the manufacturer.

[carbonman]

OT
DennisG, what a great pic.

There is a very special place in my heart
for old, blockhead labs.

[jnk]

OT

OT (off-topic) posts are welcome.

But you knew that.

[DennisG]

OT
DennisG, what a great pic.

There is a very special place in my heart
for old, blockhead labs.

Thanks, Emma is a blockhead sometimes but we love her. She is now 12 and starting to slow down a bit but she still gets excited every time I come home.

Dennis

[Mr Bill]

First choice biggest gripe. I came in with extreme tiredness, reported skin numbness all over, got sent to neurologist who told me 'nothing is wrong with you, get some exercise and loose weight'. I probably got asked if I was sleeping somewhere along the way, sure. I probably said 6-7 hours a night. That was what I was logging in bed. I had no idea at the time that my sleep efficiency was less than 25%. I now know, skin numbness goes away when you get even 3-4 hours of therapy sleep.

TS, I like and trust my doctor, he was very responsive when I took him my pulse oximeter data and put me in for a sleep study right away. He did ask me how I was sleeping, and until it got so very bad, I would have just told him the hours I was logging and he would have figured it was OK. The neurologist, I'm not so sure should be let off so easily but maybe that's because I caught some attitude from him suggesting I was just a lazy blubber. I was fortunate my sleep cratered so abruptly. It convinced me something was really wrong and I bought the pulse oximeter. Here I am in my 50's and I just started thinking, 'well I am getting old and tired, I guess this is what happens.'

[Slinky]

Whew eeeeeee! The medical profession isn't coming off looking any too good, is it?

Hmmmm. I wonder why that is no suprise to those of us here??

[jnk]

Whew eeeeeee! The medical profession isn't coming off looking any too good, is it?

Hmmmm. I wonder why that is no suprise to those of us here??

As the poll stands now, it seems many here feel that primary-care docs could be doing better. But I assume similar results might be found in a poll on any board dedicated to something as insidious as OSA. The average doc in the office, much like the average guy on the street, is not likely to be well informed on something so recently understood, relatively speaking.

And the crutch salesmen, I mean DME people, are notorious for not being helpful, but that is only because there is no billing code for "being helpful."

I think more sleep docs would be helpful if they actually knew anything much about the therapy itself. Personally, I think a sleep doc should have to use PAP therapy himself for a year, whether he needs it or not, just so he might actually know something about it beyond scribbling some numbers on a pad. He should have to wear a full-face mask for four months, a nasal mask for four months, and nasal pillows for four months before he is allowed to call himself a sleep doc.

You can file that one next to all my other crazy ideas!

[Slinky]

You know, jnk, your last suggestion wasn't all that far out. My gastro and I "argued" for a couple of years when and whether I was going to have a colonoscopy. I said not unless she agreed to no sedation, she said its too rough w/no sedation. She finally, God bless her heart, had both an upper endoscopy and a colonoscopy herself w/o sedation - and she agreed w/me: the upper endoscopy w/o sedation was much worse than the colonoscopy w/o sedation due to the gag reflex. I've had most all my colonoscopies w/o sedation since then, bless her pea-picking heart. And she is slicker than snot on a door knob w/that scope!! I have to have frequent (she says once a year, I say once every two years) colonoscopies due to my having Crohn's disease for more than 10 years which puts me at higher risk for colo-rectal cancer. I don't dispute it puts me at higher risk for small intestine cancer (which is very rare) but since I don't and haven't ever had any colon involvement I don't buy the increased risk for colon cancer bit. (My Crohn's has been confined to the mid-ileum). knock, Knock, KNOCK!

[jnk]

You know, jnk, your last suggestion wasn't all that far out. My gastro and I "argued" for a couple of years when and whether I was going to have a colonoscopy. I said not unless she agreed to no sedation, she said its too rough w/no sedation. She finally, God bless her heart, had both an upper endoscopy and a colonoscopy herself w/o sedation - and she agreed w/me: the upper endoscopy w/o sedation was much worse than the colonoscopy w/o sedation due to the gag reflex. I've had most all my colonoscopies w/o sedation since then, bless her pea-picking heart. And she is slicker than snot on a door knob w/that scope!! I have to have frequent (she says once a year, I say once every two years) colonoscopies due to my having Crohn's disease for more than 10 years which puts me at higher risk for colo-rectal cancer. I don't dispute it puts me at higher risk for small intestine cancer (which is very rare) but since I don't and haven't ever had any colon involvement I don't buy the increased risk for colon cancer bit. (My Crohn's has been confined to the mid-ileum). knock, Knock, KNOCK!

I think your words make that point well that although there are systemic problems with many aspects of healthcare, there are still a number of good docs and good testers and good equipment people who bend over backwards to be helpful to their patients despite how difficult the system itself makes it to do that. All of us appreciate it when we benefit.

I hope my poll highlighting areas needing improvement is not misread by any of the good medical people out there as an attack on them. It is only to point out what so many people are up against in trying to get what they need from a broken system.