does your specialist\cme actually help with your apnea?

yamar2001 · Post by **yamar2001** » Mon Mar 19, 2012 8:56 pm

Little information about me... was diagnosed four years ago, about 30 interuptions an hour. Received horrid Dr care for several years... all they were concerned with was my compliance (how long the mask stayed on) They never once brought up the fact that all the air was coming out of my mouth during "therapy" or the fact that I could look through the data on my machine to see if I was still having apneas. They were horrid. When I realized how much I could do with my machine on my own, I figured screw the Drs.

Fast forward to six months ago. I go get a sleep study, and the results come back. I don't need to use CPAP they say... I had three interuptions an hour and my oxygen levels stayed in the 90s the entire time I was sleeping. So I ditch the CPAP only to have extreme head aches come back, along with the depression\confusing that some of you can identify with. My insurance company is no longer helping me with Dr apt's or equip because they insist I don't have apnea. I finally saw a sleep specialist today, and he said the odds of a false negative with their testing methods is less than 3%, but he went on to say he doesn't think I could have ocne had severe apnea...and now no apnea. I lost a little weight, don't drink quite as much... but going from 30 interuptions to 3 just seems unlikely.

They essentially want to pass me along to the resiptory therapist...have them adjust my pressure (which I could easily do myself, and have in the past but Dr's all love to tell you that you can injure yourself doing it - YAY MORE $$$ FOR THE DR'S TO DO USELESS SHIT)

They want the respitory therapist to set my min at 5, max at 15... put it on auto for two weeks... and see what pressure was needed to prevent apneas. All stuff I could do on my own if I just purchased the software\card reader. I'm confused...I don't know if it's worth it to go back to the Dr or not. I would imagine each visit is going to be a pretty penny now that my insurance isn't on board. The Dr said I could get another sleep study done possibly, and that a positive result was the only way my insurance was going to support me with this again. He also advised against getting another fsleep study so quickly, as two in a row would likely have the insurance companiy never help me again.

They aren't really offering any solutions. If my insurance isn't going to help out unless I get a sleep study done... I'm not sure I even need to see the Dr's anymore. Just pay for the equip out of pocket, and track the data on my own.

What do you all think?

Also... can anyone comment on switching from a nasal pillow system to a full face mask. I was considering doing this so I wouldn't let air out of my mouth (I alread dy use a chin strap) but the Dr today advised against it, saying we would have to increase my levels if I ewnt to a full face mask (pressure)

any help is appreciated.

greatunclebill · Post by **greatunclebill** » Mon Mar 19, 2012 9:17 pm

yamar2001 wrote:Also... can anyone comment on switching from a nasal pillow system to a full face mask. I was considering doing this so I wouldn't let air out of my mouth (I alread dy use a chin strap) but the Dr today advised against it, saying we would have to increase my levels if I ewnt to a full face mask (pressure)

any help is appreciated.

raise your hand if you've ever taken your machine in for a pressure change when you went back and forth trying nose and full face.

this doctor is nuts. pressure is set based on what it takes to keep your throat open, not what mask you use. my cpap pressure is 12 and it don't change with the mask. with apap of course theres a range, but nothing to do with mask. seeing the knowledge level, i'd stay away from this particular doctor.

BlackSpinner · Post by **BlackSpinner** » Mon Mar 19, 2012 9:19 pm

Also... can anyone comment on switching from a nasal pillow system to a full face mask. I was considering doing this so I wouldn't let air out of my mouth (I alread dy use a chin strap) but the Dr today advised against it, saying we would have to increase my levels if I ewnt to a full face mask (pressure)

No the pressure makes no much difference between the two. On most machines you just set the mask you are using and it adjusts (slightly) accordingly. Considering you are losing therapy out of your mouth anyway, going to a full face mask is a no brainer.

You should get the report of you sleep study, especially the last one and post it. AHI is not everything, UARS can do just as much damage.

Lizistired · Post by **Lizistired** » Mon Mar 19, 2012 10:04 pm

You could get a recording oximeter for less than a dr's appointment. Probably learn a lot more to.
Seems like somebody had an extra card reader on here recently.

yamar2001 · Post by **yamar2001** » Mon Mar 19, 2012 11:13 pm

Lizistired wrote:You could get a recording oximeter for less than a dr's appointment. Probably learn a lot more to.
Seems like somebody had an extra card reader on here recently.

what is a recording oximeter?

the data that comes off my smart card should be pretty telling....does the oximeter record even more data ?

in terms of the dr not being knowledgeable.... I've yet to find a Dr that was truly helpful w my apnea. the Dr i saw today is at national Jewish sleep center.....rated #1 in country for respitory issues

i will get a hold of my new sleep study and post here when i can. it may take a few weeks tho.....crazy busy

have u guys had luck w those hybrid masks? i hear they are nice.

have

yamar2001 · Post by **yamar2001** » Mon Mar 19, 2012 11:15 pm

ps you guys kick ass

Goofproof · Post by **Goofproof** » Mon Mar 19, 2012 11:22 pm

I see him every three month, but I'm the one that controls my treatment, he oversees it. Jim

Komodo · Post by **Komodo** » Tue Mar 20, 2012 7:14 am

Goofproof wrote:I see him every three month, but I'm the one that controls my treatment, he oversees it. Jim

Me too, and..............my doctor approves of it!

My insurance insists that I see him once a year. It's the fastest doctor's visit I ever have. It pretty much goes exactly like this: "Are you having any problems?" (I reply no) "Any questions?" (again I say no) "OK, see you next year." and I'm out of there in 30 seconds!

That is all thanks to this Forum, and all the FANTASTIC people here, who taught me how to take care of myself!!!!!!!

Please don't get the wrong idea about my doctor, he's a great sleep doc and in VERY high demand. He did make SURE that I knew what I was talking about before we had this casual relationship about my treatment.

LSAT · Post by **LSAT** » Tue Mar 20, 2012 7:40 am

I saw my sleep doctor when he sent me to a DME for CPAP equipment and then 3 months later to check compliance. That was 3.5 years ago. Since then I have been doing nicely with my brick. About 2 years ago I purchased an autoset on Craigslist so I could periodically check my data. I continue to use my brick daily because I like it better than mt S8 Autoset. About every 3 months or so I pull out the Auto to check my data. In 3.5 years, my pressure adjustment has been insignificant and my AHI averages 3.5-4.5.

nanwilson · Post by **nanwilson** » Tue Mar 20, 2012 7:42 am

Haven't seen the docor or the dme in almost 2 years, (once they found out i didn't have insurance) . If it wasn't for the wonderful folks here I would have fallen flat on my face and quit my therapy ages ago. By the way I love the Innomed/Respcare Hybrid.......and it is certainly way cheaper than the Resmed Liberty.

Maxie · Post by **Maxie** » Tue Mar 20, 2012 8:14 am

The last (and second) time I saw my doctor the RT asked me if I was seeing the doc for any issues other than my apnea and when I said no he suggested that I make my next appointment with him and that they probably won't charge for the visit. My "sleep doctor" is a pulmonologist. I too have found that with the help of people on this forum I can be the one who is managing my care on this issue as I am the more committed one in this case!

retrodave15 · Post by **retrodave15** » Tue Mar 20, 2012 8:34 am

I find doctors that are partners in my care. I all starts with my Primary care doc who I knew when he was a wet behind the ears intern on his first ER rotation when I was an ER medic. He is a great doc who all ways says you know your body better than I do and I will help us to understand the test results together. He has always sent me to specialists that share this philosophy.

at my sleep doc, I bring my laptop and card, the receptionists downloads my card for compliance data, but we look at the data together in sleepyhead. she has actually told a few of her patients about sleep head and views it like a diabetic with glucose meter. She cannot monitor my treatment daily, but I can.

we have a great relationship, but being a paramedic it allows me have an intelligent discussion with them. I also prepare for my appointments by writing down everything I need to talk about, have a list of my medications, and carry a thumb drive of mine and my wife's medical records. I do this to maximize my time with them and I have found that by being organized it is appreciated by the staff and doctors.

Using a thumb drive for records is not hard, just ask for the records and images, usually with no problem and dump them on there. For the paper records I scan them into PDF files and save them on the drive. This has saved some serious time in the ER with my wife and her extensive heart history, instead of waiting for another hospital to send the results of the last echo, I have with me all the time. this is really important when your wife has heart has a goretex patch for a chamber wall

yamar2001 · Post by **yamar2001** » Tue Mar 20, 2012 9:30 am

think i will go on my own

how do you guys verify that your machine is putting out the pressure you're indicating it should?

my rt used a funky little instrument to do so but if i ditch them entirely.i will have to figure something else out

Pugsy · Post by **Pugsy** » Tue Mar 20, 2012 9:35 am

yamar2001 wrote: how do you guys verify that your machine is putting out the pressure you're indicating it should?

You can purchase a manometer or make your own. DIY manometer has been discussed on the forum before so you could search for it.
Or you can purchase one if not into DIY stuff
https://www.cpap.com/productpage/guage- ... ssure.html

I imagine there are others available on the internet.

jilliansue · Post by **jilliansue** » Tue Mar 20, 2012 10:39 am

Another possibility besides a full face mask is a nasal mask with chinstrap. I started out using nasal pillows, with chinstrap. I have wanted to have a full face mask to use at time, like when I have a cold, etc., or just to be able to ditch that chinstrap, but so far, none I have tried have worked for me. I use a nasal mask now. Still have to use the chinstrap. But it is another possible alternative to try.

The cpap library has a mask trial program, in which you can try out a mask, paying just $14 for shipping both ways. They include the return mailing label in the box with the mask. This way, you can try out a mask before shelling out the money to buy one.

Good luck!
Jill

does your specialist\cme actually help with your apnea?

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