Medical mediator needed

OKCSleepDoc wrote:if you can also post a picture of your ResScan detailed report data from both that may help when I call.

I do not want to hi-jack this thread by Papit.

But, if you get a chance, please look at this topic where I discuss my really ugly looking Flow Limitation graphs in ResScan.
viewtopic.php?f=1&t=90322&p=858483#p858483

Unlike Papit, I have used only the ResMed S9 AutoSet since December 2012 & my Flow Limitation Graphs have looked this bad from day 1.

Please do not hesitate to seek further information from me if you need to.
We can limit discussion of my problem to the above separate thread just to keep it out of this one.

THANKS in advance for any assistance you can offer.

You remind me so much of my initial Sleep Doctor that I started with 15 years ago.

Unfortunately, he died.
And his 2 replacements. Well, I would say they are useless, but that would be a compliment to them.

49'r,
I get what you are saying and I do hope someone can help the O.P. Being relatively new to this apnea diagnosis and treatment deal I am still very low on the learning curve and with my numbers so often in the 70 AHI to 90 AHI it is hard at this juncture to even comprehend how an AHI of 1 could be something to worry about. Add in the O.P.'s doctor, DME and equipment manufacfure are refusing to communicate to point of sending written notification my initial thoughts automatically trended toward negativity. For all I know his issue is worse than mine.

Speaking of myself I had another sleep study last night. Tech woke me at 05:30 and once unwired rather than bring my coffee and breakfast as normal (yes my new lab spoils me with breakfast in bed) he told me to shower and hang out as the doc was on way in to see me before his 08:00 patients showed up. Just before 07:00 the doctor came in my room to say he had already looked at my initial numbers for the night which confused me as follow up was not supposed to be till next week. He asked specific questions about my sleep saying he just wanted to ask while the night was fresh on my mind then said I had an 08:00 appointment with my internist who he had called before coming in my room. Just had half my blood sucked out and told to go to imaging center for MRI and CT scans of brain, neck and chest at 10:00am where I now wait to be called back soon. I expected to wander out of sleep study as usual and go to work. Just left internist, on way to imaging center and told once they finish to bring disks with images back to sleep doctor. The internist changed two of my prescriptions and added another to be picked up. Said it would be waiting at pharmacy and to pick up between imaging and back to sleep center.

What the heck could have gotten the sleep doc to work 2.5 hours early, other doctors booked immediately, scans ordered.when a fresh MRI of brain was done just last week, back to sleep doc today and who knows what else just from the observations from one nights sleep study of many??? My spine specialist cancelled my back surgery just last week saying no can fix back or neck untill apnea under control. Of course these questions are rehtorical as I know some random reader from the world wide web cannot figure all this mess out from a few poorly written paragraphs. Nor do I expect a stranger to call the sleep lab and ask them what is going on.

hueyville wrote: . . . What the heck . . . scans ordered . . . MRI of brain . . .

Sounds like impressive thoroughness.

Sometimes the cause(s) of a person's apnea troubles become(s) obvious from imaging that can, for example, show anatomical differences that can be addressed with something other than PAP therapy. If someone's apneas do not seem to respond in the usual way to PAP, it can warrant further investigation to see if another approach might be better suited to that patient. That can lead to extensive testing and imaging that are not so much needed by other apnea sufferers whose condition responds well to air-pressure approaches. If the root problem involves certain forms of inflammation, for example, the time to do the imaging is right away to see what is going on as close as possible to the time the PSG data was collected, not later.

But it sounds like you are in good hands of medical people who are not shrugging off your individual circumstance and history; whereas, Papit may not be so fortunate with his paid medical team. Although his concerns may, or may not, be medically significant from a medical person's point of view, the concerns are his concerns, and a good doc will do all he or she can to explain things to Papit in a way that makes sense to Papit. All patients deserve full efforts being made to do exactly that. And the doc with the data and history in front of him is in the best position to do that, whether he feels he can take the time for that kind of holistic approach or not.

In my opinion.

Keep us posted, hueyville, whether in this thread or in one you may decide to start for yourself.

Sounds like you do indeed have an exceptional medical team working for you hueyville. You are fortunate. I don't think my sleep doctor has ever actually been in the sleep lab when his patients are there and I also don't think he has ever actually touched a CPAP machine. He certainly doesn't seem to know anything about how mine works...

Huey, sending my best wishes your way. Hopefully you'll get things going on the right track soon. I'm really impressed by your team of Drs. Although it sounds dramatic and extraordinary, that's the way good doctors work all the time. We've had our Internist, Surgeon, Cardiologist all show up at the hospital or ER during the wee hours of the night on different occasions to check on us themselves, even at times when I thought the hospital personnel were on top of things. Keep us posted.

I ended up going on from imaging after the MRI and CT scan to the hospital outpatient center, put in bed and attached an I.V. Nurse injected some special medication they described as a marker then came and took a blood sample every 30 minutes for 4 hours. Nurse admitted she was not really sure what the docs were looking for but sure they would tell me. Afterwards was told to go back to tbe sleep doctors office. He explained due to some really odd readings during one event he was called and decided to get as much info as possible while a previously unobserved event was fresh. He also admitted he was sure what happened was significant but had no clue yet as to what it was and its importance. Said all he knew to do was get as much data as possible as quickly as possible and to go home and ontinue bipap therapy as have been past 2 weeks.

Meanwhile he said he was going to have to pull out some books to study and send my info to some other docs including the doc be did his residency with. Basically he admitted something important showed up buf has no clue what it is. I trust a man who admits he does not understand something but is going to figure it out. He was in my room at 7am and I was back in his office from 4pm till 5pm. He spent every spare minute of his day chasing the gremlin in my head. His inclination is still same as initially thought that my head injury history has scrambled my eggs. Also admits it may not ever be completely manageable. The knowledge that he is trying above and beyond has me very happy this guy decided to locate his practice 4 miles from my house. Even if someone said they knew some old hand expert I would be very hesitant to leave his care. Was also told they may move my next lab appointment up. Also asked if I would be opposed to checking in the hospital so they could work me up with some tests then monitor the nights sleep and already have me in the main campus if he decided to bust me with some specific test in the middle of the sleep study. Either he cares, is curious or wants to bust the insurance companies wallet. Either way finally having someone who is serious about finding the root cause is stunning.

So I spoke with Resmed Clinical Specialist As Promised.

Before I begin, I would comment that your flow limitation overall is actually pretty well controlled, even though you have a few spikes, they are addressed. I think the more important thing is that your AHI is well controlled on the ASV whereas it was not before.

That being said, I spoke to the Resmed clinical Specialist and he commented essentialy exactly what RobySue said. Your Flowlimitation was likely taken care of with your AutoMachine due to the machine being able to adjust the pressure when flow limitation was encountered. Your curent device is on Fixed Adapt SV mode so therefore as the EPAP is fixed, the flow limitatoin may be occuring given your pressure support settings. The way you could test this would be to either increase your EPAP by 1 cm H20 to see if it addressed it, or to raise your pressure support minimum from 2 to 3. Essentially you probably need a bit more pressure and if the PS falls to 2 on top of 7, perhaps 9 or 10 cm H20 is enough to cause some flow limitation which is why the machine ramps up the pressure every time that is encountered and it resolves the FL.

I hope that makes sense. Sorry it took me a while to call Resmed for you (RobySue was right on the money anyways!).

OKCSleepDoc wrote: That being said, I spoke to the Resmed clinical Specialist and he commented essentialy exactly what RobySue said.
...
I hope that makes sense. Sorry it took me a while to call Resmed for you (RobySue was right on the money anyways!)

Thanks for letting me know I was indeed "right on the money".

I have to figure out how to fix my goof of hijacking this thread and getting my mess intertwined but that said here is an update. After the sleep study gone warp drive, the next two days going to doctors, I got a call that my follow up with the sleep doctor scheduled for November 5th has been moved up to this Monday morning at 9:00 am. Originally I had the earliest follow up available on the books but after whatever happened they found room to move my appointment up over two weeks. The girl that called asked if it was o.k. for them to go ahead and precert me for another study to be done in the hospital. Of course I said yes. This will be my third study in two months with this doctor. Seems like finally someone is really jumping on my case. After being shunned by the last two docs this guy either really cares or his wife needs a new Porsche.

hueyville wrote:. . . this guy either really cares or his wife needs a new Porsche.

Or both.

But hey, if he's that good at what he does, maybe he can make a difference in a bunch of people's lives, and then who cares if he buys her a new car for every day of the week, eh?

OKCSleepDoc wrote:So I spoke with Resmed Clinical Specialist As Promised.

Before I begin, I would comment that your flow limitation overall is actually pretty well controlled, even though you have a few spikes, they are addressed. I think the more important thing is that your AHI is well controlled on the ASV whereas it was not before.

That being said, I spoke to the Resmed clinical Specialist and he commented essentialy exactly what RobySue said. Your Flowlimitation was likely taken care of with your AutoMachine due to the machine being able to adjust the pressure when flow limitation was encountered. Your curent device is on Fixed Adapt SV mode so therefore as the EPAP is fixed, the flow limitatoin may be occuring given your pressure support settings. The way you could test this would be to either increase your EPAP by 1 cm H20 to see if it addressed it, or to raise your pressure support minimum from 2 to 3. Essentially you probably need a bit more pressure and if the PS falls to 2 on top of 7, perhaps 9 or 10 cm H20 is enough to cause some flow limitation which is why the machine ramps up the pressure every time that is encountered and it resolves the FL.

I hope that makes sense. Sorry it took me a while to call Resmed for you (RobySue was right on the money anyways!).

Thanks so much RobySue, you're a gem, and especially OKCSleepDoc for the follow-up support I needed. You're a credit to the profession. My bad for not replying sooner. I've been away from the board for awhile and missed your post.

I agree, as have others such as John and Avi, that AHI is of primary importance relative to FL detailed graphs which, after all, are mathematic derivatives of the shape of air flow wave forms. So I've been happy to see AHI so well controlled by my new ASV machine from June until now. At the same time, most educated individuals in technical fields do not just hang their hat on their favorite "hook" and disregard other signs that look questionable and raise their eyebrows. Thus my focus on the graphed flow limitations was initially something I wanted to get evaluated because I recognized that they were maxed out on the charts, and that needed to be explained or rationalized. It's also a challenge to learn as much as you can about how the various sleep parameters fit together.

Re. your post, does "that make sense" to me? Yep, in that I'm beginning to get the gist of what both of you are saying, but I need to do some homework to better understand the concept of "pressure support" (aka PS) and how it plays here. And so I have been varying EPAP incrementally, and holding at each level for a few days or up to two weeks at some levels. I went first from 7 to 7.6 to 8 cmH2O, then down to 7.4, 6.8, 6.4, 6 and then back up to 7. Am now reviewing the resulting AHI and IPAP Lo and Hi at each level that SleepyHead has recorded. I'm not confident that I can trust SH's PS numbers though. And I'm not sure how to manually figure my own PS figures. SH seems to be saying PS min and max stayed fixed at 3 and 15cm even while IPAP Lo and Hi varied each time I made a change in EPAP settings.

Again, thanks so much for the great backup on this topic.

hueyville wrote:I ended up going on from imaging after the MRI and CT scan to the hospital outpatient center, put in bed and attached an I.V. Nurse injected some special medication they described as a marker then came and took a blood sample every 30 minutes for 4 hours. Nurse admitted she was not really sure what the docs were looking for but sure they would tell me. . . .

Hi Huey. Did your doc ever spell out what he saw in the CT scan (and MRI)? And what it was specifically that the sleep tech saw during your sleep test that caused your doc to swing into such an intensive, well coordinated action by the 'team' of docs/medical tests? I hope it all got resolved quickly and effectively.

hey papit, just wanted to add in my 2 cents here... (and note that I do not know much about ASVs nor did I read all 4 pages of this thread in detail). But, what I wanted to say is that in my case, addressing flow limitations made a BIG difference in my treatment.

At my initial titration, the doc said that a pressure of 7.5 was good for me (eliminated all apneas/hypopneas). So, I used 7.5 and tracked my data - while indeed I wasn't having any A or H events, I was getting quite a lot of flow limitations. And, I didn't feel properly treated (waking up with reflux, sore throat, headache, etc).

Eventually, I had to go all the way up to 10.5 to get rid of the symptoms, at which point the flow limitations were quite minimal too.

So as OKCSleepDoc and Robysue said, my experience supports an increase in pressure to get rid of the flow limitations -- just track your symptoms too and watch out for centrals (I got them at 11cm and above).

As a side-note, I also tried my machine in APAP mode (and with the "address flow limitations" flag set), but I did not do well with the changing pressure nor did the machine address the flow limitations very well, so I prefer fixed CPAP mode. I just wanted to add this since OKCSleepDoc mentioned something about your machine increasing pressure to address the flow lims (though if I understand correcly it was your *old* machine that was working in auto mode?).

And OKCSleepDoc - you sound like a great sleep doc!! Glad to have you on the board

I would like to say thank you to Robysue & OKC doc & everyone that has participated in this thread for there ideas as I have a similar problem to Papit with FL.

I now have a better understanding & thanks to Pugsy for pointing me towards this thread, I don't know how I missed it.

Cheers all

echo wrote:hey papit, just wanted to add in my 2 cents here... (and note that I do not know much about ASVs nor did I read all 4 pages of this thread in detail). But, what I wanted to say is that in my case, addressing flow limitations made a BIG difference in my treatment.

At my initial titration, the doc said that a pressure of 7.5 was good for me (eliminated all apneas/hypopneas). So, I used 7.5 and tracked my data - while indeed I wasn't having any A or H events, I was getting quite a lot of flow limitations. And, I didn't feel properly treated (waking up with reflux, sore throat, headache, etc).

Eventually, I had to go all the way up to 10.5 to get rid of the symptoms, at which point the flow limitations were quite minimal too.

So as OKCSleepDoc and Robysue said, my experience supports an increase in pressure to get rid of the flow limitations -- just track your symptoms too and watch out for centrals (I got them at 11cm and above).

As a side-note, I also tried my machine in APAP mode (and with the "address flow limitations" flag set), but I did not do well with the changing pressure nor did the machine address the flow limitations very well, so I prefer fixed CPAP mode. I just wanted to add this since OKCSleepDoc mentioned something about your machine increasing pressure to address the flow lims (though if I understand correcly it was your *old* machine that was working in auto mode?).

And OKCSleepDoc - you sound like a great sleep doc!! Glad to have you on the board

Thanks, Echo, for your input and past experience with flow limitations. I'm delighted to hear how you found a way to reduce your FLs and alleviate your awake symptoms. Wonderful! And I agree as well that Robysue and OKC doc are superb!

Good sleeping and good health to you.