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sleep specialist's lack of knowledge
#1
I went for my 2-month follow up visit with my "sleep doc" today. I have learned in the past (from the epileptologist and neurologists that I have seen for my seizure disorder) that doctors aren't always as knowledgeable as one would hope, and I think it applies here as well. I took along a couple of screenshots from Sleepyhead to show to her and ask a couple of questions about, and (not surprisingly) she had never heard of Sleepyhead. When she asked how things were going I told her that it was getting better, and that setting my pressure from 5 to 6, and the EPR to 1 seemed to help. She didn't know what EPR was and I had to explain it to her. She said that no one had ever asked her about these things before, nor had anyone gotten into the clinical settings (that she knew of). I'm not sure she would have known how to get in!



As I think most of us here know, the majority of people with a disorder of some sort probably don't want to know anything beyond what the docs tell them, and, sadly enough, end up with subpar treatment and suboptimal results. 

Oh well, I guess this is just kind of a rant mixed with some disappointment and some humor. After dealing with epilepsy for 35 years I have a pretty good understanding of many facets of it so I was not too surprised that I knew some things that my doctors didn't, but after having studied sleep apnea for 4 or 5 months I didn't necessarily want to explain basic stuff (like EPR) to my caregivers. C'est la vie! That's why wee need forums like this, right?

Btw, per her suggestion I will be resetting my pressure range from 7 to 12 instead of 6 to 15. Based on some of the info I got here I had already decided to go to 7, but I wanted to wait til after the visit today. My AHI is hovering around at just under 3, but I have had a few nights at or below 1. I feel a lot better on those nights and that's what I want to shoot for consistently. I'll be doing that on my own (and with the help of you all here) because she says that under 5 is considered treated and there really isn't a lot more they will do for me. It seems that what they are mostly interested in is that I'm in compliance with the usage guidelines.

Cheers!
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#2
Good that you are actively involved in your overall health management.  Cool

To expect your medical professional to be an "expert" with a better knowledge than the combined knowledge base of any major forum on a topic is probably a little unfair, but basic sound knowledge in an overall field is to be expected.

What IS vitally important is to have medical professionals that will continue learn and research more than they already know, and are willing to work WITH YOU on your health, rather than just tell you what they think you should do. 

I have a specific gastric issue that affects 11% of the patients that have had their gallbladder removed, yet most doctors and medical professionals have never heard of Sump Syndrome as a gastric condition post gallbladder surgery. 
I'm still "educating" my new doctor on the topic.. as I have also done with my previous three doctors (staying in one place/town/city has always been a failing of mine)

Continue to increase your knowledge base on your health needs, and keep seeing those doctors who will work and learn with you and from you as you go. 

FWIW... my sleep specialist doesn't think it is possible to open your mouth and let a continual flow of air from the CPAP machine blow through your nose and out your mouth to clear and dry the nostrils (my mask is a nose mask, not a full face), I have offered to take my machine in and prove to him that it can be done, but he just waves his hand dismissively at me and says "it can't be done."  Oh-jeez

Good luck with your ongoing treatments.
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#3
Sadly, truly, c'est la vie. :-(

I was disappointed at the extreme lack of knowledge and caring from my sleep "doctor". After 1 month of CPAP experience and perusing here on this forum, how could I possibly know more than him about sleep comfort, AHI factors, etc? How frustrating!!!

So, good for you for vetting your dr (you did give her the opportunity to step up and to support you at a better level), and for being willing to take care of your own health!
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#4
I think it would be good if all docs spent at least a little time in these forums. I don't think many of them even realize they are out here. This person I saw today had also never heard of people taping their mouth to stop mouth leaking, and didn't know much at all about the various straps and such available to help with such issues. For people like her, especially, who deal with new apnea patients, that is especially important.
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#5
What bothered me most about my last visit was not the lack of knowledge but the lack of interest.
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#6
Along the line of what Chill said... What bothered me the most was my sleep "doctor's" apathy about me, and his extremely obvious interest in making $ from my compliance.
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#7
Gosh, I just see a PA now, not even a doctor!

Apparently, there are a lot of rogues at this clinic. They were not at all surprised that I don't bring my machine in - just the SD card. Why? I can do the settings myself. In addition, they are now pretty familiar with Sleepyhead. This is the REST of the staff, not the doctors (whom you never see again apparently). I'm waiting to see how long I can go without having to get prescription renewed. Then, I'll ask my primary to just write me prescription for supplies.
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#8
(04-20-2017, 07:57 PM)Leemax Wrote: I went for my 2-month follow up visit with my "sleep doc" today. I have learned in the past (from the epileptologist and neurologists that I have seen for my seizure disorder) that doctors aren't always as knowledgeable as one would hope, and I think it applies here as well. I took along a couple of screenshots from Sleepyhead to show to her and ask a couple of questions about, and (not surprisingly) she had never heard of Sleepyhead. When she asked how things were going I told her that it was getting better, and that setting my pressure from 5 to 6, and the EPR to 1 seemed to help. She didn't know what EPR was and I had to explain it to her. She said that no one had ever asked her about these things before, nor had anyone gotten into the clinical settings (that she knew of). I'm not sure she would have known how to get in!



As I think most of us here know, the majority of people with a disorder of some sort probably don't want to know anything beyond what the docs tell them, and, sadly enough, end up with subpar treatment and suboptimal results. 

Oh well, I guess this is just kind of a rant mixed with some disappointment and some humor. After dealing with epilepsy for 35 years I have a pretty good understanding of many facets of it so I was not too surprised that I knew some things that my doctors didn't, but after having studied sleep apnea for 4 or 5 months I didn't necessarily want to explain basic stuff (like EPR) to my caregivers. C'est la vie! That's why wee need forums like this, right?

Btw, per her suggestion I will be resetting my pressure range from 7 to 12 instead of 6 to 15. Based on some of the info I got here I had already decided to go to 7, but I wanted to wait til after the visit today. My AHI is hovering around at just under 3, but I have had a few nights at or below 1. I feel a lot better on those nights and that's what I want to shoot for consistently. I'll be doing that on my own (and with the help of you all here) because she says that under 5 is considered treated and there really isn't a lot more they will do for me. It seems that what they are mostly interested in is that I'm in compliance with the usage guidelines.

Cheers!

Sadly, yes... worldwide
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#9
I just checked, and the only "doc" I have seen is a PA-C. I saw her for about 10 minutes before I did the sleep study, and then for about 10 or 15 minutes yesterday. There is little to no real help available here unless you're willing to be pretty proactive. As serious as untreated sleep apnea can be, you would doctors might just take it a little more seriously. I can't imagine how many people "fail" at cpap because of almost total lack of support. We all know that, especially in the beginning, cpap can be a real challenge. I'll bet if someone is "non-compliant" the powers that be would just cut them off and take their machine back. It doesn't seem like there is much of a system in place to help people figure it out.

Also, in retrospect, I probably should have been diagnosed a lot sooner. Over the past three years I have described to a couple of my doctors a constellation of symptoms that are all possible complications of sleep apnea. Even though they are in the same group, they never put it together to think that maybe I should have a sleep study done. I finally realized that's what the problem might be and got the ball rolling myself.
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#10
It's sad, how easy it is to not get diagnosed or to not get effective therapy. And sleep apnea and xpap seem (to me) like such an easy thing.

For at least 20 years, every dr I've seen has heard me say how tired I am. And they have always blown it off to lifestyle choices. :-/
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