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Echo - Within normal limits - Left atrium contracting more frequently then the other chambers (having trouble keeping up with the rest of heart), however test results still considered normal. Probably related to sleep problems.

So, my husband had an appt with his resp therapist to pick up the auto bipap for his home study (same resp therapist, same supplier). He started talking to her about doc #1 and #2, how their dx's are completely diff. The RT was shocked. She said doc #1 is an EXTREMELY well respected sleep physician and the president of the AASM. The RT then went and got the lead sleep tech to come look at his psg and titration results. They basically told him that he absolutely DOES have complex sleep apnea and that the auto bipap would be taking his treatment back a step. They feel the Adapt SV is the machine he needs. They feel he is SOOOO close to where he needs to be, but they think his EEP needs to be 10cm h20. The lead tech asked for his permission to call doc #1 and discuss this further. Doc #1 happens to be on vacation this week, but the lead tech has her cell number and called her anyway. They got the order to increase to 10 but do not want to do it until monday, incase he has trouble over the weekend and cannot get in touch with anyone.

What do you all think? He is so completely frustrated and about to give up!

They said his initial psg (just him, no machine) had 75 central apneas. Lead tech feels doc #2 is wrong.

His FP wants him to see another sleep doc (#3) that he knows.

I also have gotten another sleep doc (#4) name from a diff physician. Should we go for yet ANOTHER opinion?

President-elect Doc1 and the ASV sounds like the route that I would likely take in that situation, Casiesea. The BiPAP auto is a big step backwards for confirmed complex sleep apnea in my opinion as well.

If it were me I'd give Doc1 plenty of opportunity to get the ASV just as fine-tuned as possible. If that didn't pan out, then I'd eventually head north to a very well-respected CompSA/CSDB research institute for yet another sleep study: http://www.bidmc.harvard.edu/display.asp?node_id=662

You two are on the home stretch, Casesia. Tell your husband he does not have our permission to even think of giving up now! Rather, allow for plenty of methodical trial-and-error on your doctor's part---but not haste on your part. A good doctor may justifiably need plenty of time to fine tune treatment for challenging cases of complex sleep apnea.

Others will undoubtedly have valuable opinions to share. Good luck!!!

-SWS wrote:President-elect Doc1 and the ASV sounds like the route that I would likely take in that situation, Casiesea. The BiPAP auto is a big step backwards for confirmed complex sleep apnea in my opinion as well.

If it were me I'd give Doc1 plenty of opportunity to get the ASV just as fine-tuned as possible. If that didn't pan out, then I'd eventually head north to a very well-respected CompSA/CSDB research institute for yet another sleep study: http://www.bidmc.harvard.edu/display.asp?node_id=662

You two are on the home stretch, Casesia. Tell your husband he does not have our permission to even think of giving up now! Rather, allow for plenty of methodical trial-and-error on your doctor's part---but not haste on your part. A good doctor may justifiably need plenty of time to fine tune treatment for challenging cases of complex sleep apnea.

Others will undoubtedly have valuable opinions to share.

Ditto to everything -SWS said. And to what the RT's are advising your husband:

Casiesea wrote:The RT then went and got the lead sleep tech to come look at his psg and titration results. They basically told him that he absolutely DOES have complex sleep apnea and that the auto bipap would be taking his treatment back a step. They feel the Adapt SV is the machine he needs. They feel he is SOOOO close to where he needs to be, but they think his EEP needs to be 10cm h20. The lead tech asked for his permission to call doc #1 and discuss this further. Doc #1 happens to be on vacation this week, but the lead tech has her cell number and called her anyway. They got the order to increase to 10 but do not want to do it until monday, incase he has trouble over the weekend and cannot get in touch with anyone.

The only thing I'd do differently, since doctor # 1 has ok'd raising the EEP... I'd go on and raise the EEP to 10 myself. But that's just me. I wouldn't wait another day. Nor would I switch to a trial on another machine. I'd stick with the ASV.

I understand your husband's frustration, and yours, Casie. I'd give doctor #1 a LITTLE more time to get the ASV settings right. But not much more time. If doctor #1 doesn't get it going right very soon, I'd skip doctors 2, 3, 4 and go straight to the place -SWS suggested: http://www.bidmc.harvard.edu/display.asp?node_id=662

Rather, allow for plenty of methodical trial-and-error on your doctor's part---but not haste on your part. A good doctor may justifiably need plenty of time to fine tune treatment for challenging cases of complex sleep apnea

Ditto to what -SWS said, and especially the above. And me, I would wait till after the weekend.

O.

I still think that old EEP 9 is a good place to start, but there isn't a huge difference between EEP 9 and EEP 10. I always end up going back to EEP 9 for some reason. It must be my lucky number. For some reason the initial EEP 6 always sounded a little off to me. Glad the lights went on and someone said stay with the Adapt SV.

Banned

You may want to change the MIN PS to 3cmH2O as a starting point for the Inspiration pressure. Don't forget you can have your doctor prescribe ResLink and ResCan v. 3.4 if you are using Windows XP and not upgrading to Vista. Than you can get the data you need to fine-tune your settings with the Enhanced Adapt SV, if you like.

He got a bit of a reality check last night, I think he is back on the band wagon! We both fell asleep downstairs watching a movie. He woke up around two gasping for breath...scared me half to death, too. Anyway, he feels like crap this morning and talk of giving up has ceased.

I was reading some of the other posts and I keep seeing people with complex apnea saying they are on oxygen at night. Do yall think that is something we should push for? His sats are scary (to me), I put my patients in the hospital on O2 well before they hit the 80's. Anyone know what sats have to be to qualify for O2 therapy with SA?

I know I have said this before, but I need to say it again... I am so grateful to all of you for your help and opinions. How anyone ever managed before this forum is beyond me.

Casiesea wrote:He got a bit of a reality check last night, I think he is back on the band wagon! We both fell asleep downstairs watching a movie. He woke up around two gasping for breath...scared me half to death, too. Anyway, he feels like crap this morning and talk of giving up has ceased.

Was he on the Adapt SV when he woke up gasping for breath? I think it's a bit early for the O2 bottle. Studies have shown that the Adapt SV is much more effective than O2. He needs to get more in-tune with the Adapt SV, tell you exactly what he is feeling, and get more involved in the settings. Ultimately (and the board will hate me for this) the Adapt SV is about comfort measures and how rested you feel in the morning. He needs to ask himself upon inspiration, "Am I getting too little or too much air? He needs to ask himself upon exhale, "Is it comfortable to exhale?". Finally ask, "Does this feel like normal breathing?" When he can answer yes to those three questions, the machine is setup pretty close to what he needs. Then he needs to ask himself, Do I feel rested today?". You don't really need a sleep lab or all the numbers and all the mumbo-jumbo to tell you when it is working. Example: I set the machine at EEP for comfortable exhale. I set the MIN PS for slightly over what I may really need because I like to feel the positive pressure in my mask without going to the point of 'inflating' me. He is the best judge of proper therapy when he gets the feel for what he needs vs. what the machine is delivering.

Banned

Some very amazing highlights of this thread!!

The president of the AASM (a nationally renowned sleep doctor) requests that a Resmed expert be present for Casesia's husband's ASV titration. That ASV titration ends February 26th and Casesia shares very positive preliminary results of that ASV titration:

on February 26th Casesia wrote:It went GREAT! He is on his way home now. He said the first half of the night they came in about 7-8 times to adjust the machine, but then the rest of the night he slept awesome! His sats never went below 90%!

But that was just a favorable ASV sleep study. Getting the equipment in a timely fashion is an altogether different challenge. However, the very next day Cassesia shares the great news that her husband will be able to sleep with his ASV machine for the first time that night of February 27th:

on Feb 27th Cassesia wrote:Ok...we have it! I figured constant harassment would be the best course of action and I was right! ...We also have the Quatro FF

After persistent number-prodding from Banned, Cassesia reveals which ASV settings the sleep doc and Resmed ASV specialist initially set her husband up with:

on Feb 28th Cassesia wrote:EEP 6.0
Min ps 4.0
Max 14.0

Note that those initial settings by the medical team actually agree with the lowest RDI achieved during that ASV titration. They are entirely reasonable initial ASV settings in this altogether medically-challenging case of complex sleep apnea.

However, Banned does not at all agree with these ASV settings that the Resmed ASV specialist and nationally-renowned sleep doctor assigned. Banned knows perfectly well what's comfortable for him and what he thinks ought to work for others. Banned wants to set things right! So after Cassesia's husband tries those entirely reasonable albeit preliminary PSG-based settings for merely a night, Banned steps in with the necessary corrections (while having EEP values turned backwards):

on February 28th Banned wrote: That EEP of 6 sounds uncomfortable (at least for me). I suggest we try lightening up on the EEP, but before doing anything we need to know his nominal inspiration pressure from the VPAP III experience, or even the CPAP experience. At minimum, for tonight I would change his EEP to 7 and change his MIN PS to 3.0.

And Banned's suggestion of self-administered pressure changes in this altogether medically challenging complex-sleep-apnea case continues to this day:

on Apr 4th Banned wrote:He needs to get more in-tune with the Adapt SV, tell you exactly what he is feeling, and get more involved in the settings...You don't really need a sleep lab or all the numbers and all the mumbo-jumbo to tell you when it is working....

Ultimately this board is about rendering opinions and help. It's what makes this board so great. While I deeply respect Banned's right to maintain his own opinions, I vehemently disagree with the way he has interfered with Cassesia's husband's highly qualified medical team.

But alas, this is my own opinion: Cassesia, I personally think you should allow your medical team a fair chance to affect their own expertise. This is a medically challenging case and I do not feel as if Banned has demonstrated greater proficiency than your medical team comprised of a renowned sleep doctor and a Resmed ASV titration specialist. At least give your well-qualified medical team more than a single night before allowing anyone on this board to even suggest that they should be the one to medically treat your husband's highly complex and altogether challenging case.

Every time I read this thread that Twilight Zone music starts playing in my head over and over again. And that reaction is not an opinion. It's an involuntary response on my part... eerie as it may musically be.

I've remained in the background because I really have no actual experience or knowledge of the equipment being used here, nor the complexities involved in Cassies husbands case, but SWS just stated very well the "gut feeling" I've had for the duration of this thread.

Though I have received incredible advice and learned opinions on this board, I don't have a complex issue. Even with my "moderate" apnea I give my doctor the "first place" in the treatment and used this boards information to question her about the reasoning for the treatment direction and suggestions for modifications. She has usually allowed for those modifications because my arguments were not trivial and I had specific examples to give her. For that I am extremely thankful to this board!!!!!

I would always defer to my medical teams prescriptions if there was any question, however, I would do research to validate or argue a case. Again, I do not have a complex issue going on. Simple moderate sleep apnea.

As SWS has said, I feel that giving the medical team the benefit of the doubt, go with their learned prescriptions. They're not perfect, but neither are we. They are dealing with a complex issue and like it or not, complex issues in any realm are time consuming and require some level of patience....

Always remember, what works for one person may not and probably will not work exactly the same for someone else. What you get here is opinion -- nothing more, nothing less.

Keep any information gleaned here in the back of one's mind and use that information to ask educated questions of the medical team.

I would also be quite interested in what SAG would opine here!!

Just my $.02 again......(I may be getting close to a nickel here)......

cheers
goose

Casiesea wrote:Something isn't right. He said his sleep was "awesome" during the last 1/2 of the titration. Yet, when we bring this machine home...he isn't doing well. I don't get it.

I changed the numbers last night. EEP 9 Min PS 3

Of course, he passes out immediately. I was catching up on Oprah and I noticed he was very restless and something just was not right about his breathing. I could hear the machine ramping up the pressure, but he would not take a breath. Eventually, it would blow his mouth open or he would startle and the whole thing would start over again.

He felt like there was too much air pressure (yeah, cause he wouldn't breathe) and he felt like he was struggling to exhale. Anyway, I switched it back to see if he was still startling - but I fell asleep.

This mornings numbers -

Leak 29L/M
VT 274-740
resp 12-18
mv 5-10

SWS and Goose are right, of course. SAG is waiting for Casiesea to post a real sleep study so he can comment on it, I believe. The last time we tried EEP 9 MIN PS 3 his breathing didn't seem right. Obviously, if the machine is blowing one's mouth open the patient needs to reduce the inspiration pressure. If he goes to EEP 10 (as the RT recommended), MIN PS 4 is only going to be more inspiration pressure (IPAP 14cmH2O). I'm really not trying to ruin this fellows life, but as a regular user of the Adapt SV I don't mind reporting on how it works. My problem is I also don't mind messing with sleep medicine professionals, in general, so I will try and tone that down lest someone gets offended.

Banned

I am working on scanning the sleep studies in, I swear. My 8 yr old is far more computer literate than I (maybe I can get her to do it). I have asked my husband to do it, but he is so busy trying to keep up with work (when he isn't sleeping) and appointments, he just hasn't gotten around to it. As a matter of fact, he is back in his office sleeping right now! Poor guy! I could probably do the scanning thing but getting it from there to the computer, then figuring out how to take his name off... ugggg.

Banned - He was not on his machine when he gasped, we fell asleep downstairs watching tv. I actually don't think I have ever heard him gasp for air before. Not like that anyway.

rested gal wrote: The only thing I'd do differently, since doctor # 1 has ok'd raising the EEP... I'd go on and raise the EEP to 10 myself. But that's just me. I wouldn't wait another day. Nor would I switch to a trial on another machine. I'd stick with the ASV.

I agree with RG. But Casiesea has to remember that raising the EEP to 10cmH2O will automatically raise the baseline Inspiration pressure to 14cmH2O (if Casiesea leaves Doc 1's prescribed MIN PS at 4cmH2O). That is the reason I suggested she lower the MIN PS to 3cmH2O. Again, I appreciate what the board has taught me. The Adapt SV is very automated machine. As such, a change in one parameter will have a consequence on another parameter. I agree with the RT that increasing EEP (a bit) is a good concept, but it will effect the inspiration pressure and that also needs to be taken into account. I would not increase the EEP to a point that he can't handle the inspiration pressure. Example: The Adapt SV literature clearly states that an EEP of 8cmH2O and MIN PS of 5cmH2O is a good starting point for 90% of Adapt SV patients. But this gentleman may find an inspiration pressure of 13cmH2O to high, just as he did 12cmH2O. So my (Twilight Zone) suggestion is that Casiesea raise his EEP to 8cmH2O and the MIN PS to 3cmH2O for an inspiratilon pressure of 11cmH2O and see how he does.

Banned

I could probably do the scanning thing but getting it from there to the computer, then figuring out how to take his name off... ugggg.

A scan makes a picture file and puts it in the computer automatically, you just have to figure out where the picture was saved.

As for taking the name off:

Scan something simple first, right click on the scanned file, click on open with, select "painter" and look for the tool that looks like an eraser. Click on the eraser tool and try to use it on that simple scan.

O.

They said his initial psg (just him, no machine) had 75 central apneas. Lead tech feels doc #2 is wrong.

His FP wants him to see another sleep doc (#3) that he knows.

I also have gotten another sleep doc (#4) name from a diff physician. Should we go for yet ANOTHER opinion?

Casiesea

I just finished reading this entire thread and feel that I need to weigh in.
I am not a medical professional but have been on the Assist SV since June 2006 and have considerable experience with it.

a) Unlike A CPAP or BiPaP, one should not "try" different pressure levels.
SWS is right and Banned is really steering you in a bad direction. This is your husband's health here - not selecting which cable channel is best for this evenings entertainment.

b) The ASV algorithm is not always the full answer for everyone. After all,
although I think it is one great piece of engineering, it was initially designed for the heart failure / Cheyene Stokes variant of Sleep Apnea.

c) The amount of experience a given sleep doctor has with the ASV and the amount of experience a DME has is very important. A good sleep MD who
does considerable testing with ResMed products in a medium sized city might only have 20 patients using this device. Other MD's might be less.

d) Asking the lab for the raw test data files (graphs often displayed with test lab software called Sandman or other formats) are invaluable for someone like SAG - who does manage a sleep lab and does a very good job interpreting such data, is helpful above and beyond the written report.
Demand it.

e) MOST IMPORTANT - there are a few labs around the USA with extensive experience in unique sleep cases. I think you should try one of them for the next test. I selected Beth Israel Deaconess Hospital in Boston, the teaching hospital of Harvard University. There are certainly others - Mayo Clinic and perhaps SAG can weigh in with a few other suggestions.

Let me tell you my story, before I suggest what worked for me: I live at moderate altitude, which tends to impact centrals (e.g. I would probably do better at sea level). After trying CPAP, with supplemental oxygen at night, they switched to BiPaP with supplemental oxygen. It never quite seemed to solve all the problems and I still felt tired. My sleep architecture needed meds to get a reasonable night's sleep. Local MD said, perhaps you need to wait on the technology to catch up and get through approvals with the FDA.

So I was the first ASV patient in my state. The test wasn't that conclusive.
Yet I liked the machine's approach and asked to keep it for a few months.
The factory people who came to help with the test, trained some of the local DME and hospital personnel. They said EEP=6 was a recommended starting point and for some people it helped. Others ResMed was suggesting were helped EEP=8. Some people were not helped at all by the algorithm.

The specialists at BI use a technique called CO2 rebreathing or deadspace.
They feel the original ASV machine algorithm needs some help with some type of cases - for me, deadspace tubing and an in line valve, a Non Vented mask, EEP=6 and external Oxygen at night are all needed.

The doctor conducted test ran out of time to optimize settings of amount of deadspace and other variables with me supline, so they recommended I sleep on my side.

The point of all this is your husband has something going on. It's not the run of the mill obstructive sleep apnea, which almost seems like the latest boutique disease which people are putting labs in doctor's offices, each branch hospital, empty hotel or nursing homes etc.

Some people know nothing about the ASV or the Respironics unit. So chose caregivers wisely.

f) Lastly, several masks work well with the ASV. The Quattro is NOT the only one that works. Key is keep the leak rate below 24 L/M. The ASV algorithm doesn't cope well with high leak rates.

g) Getting a ResLink module is a good idea. It contains a smart card that keeps about a month of data which is read by the ResScan software, which
Resmed (stupidly if you want my opinion) refuses to sell to individuals. DSM is right in that a pulse oxymeter may be connected to the module and its data recorded by ResLink and plotted in ResScan. Only one type of pulse ox unit works with the ResLink and it is expensive. The ResLink module used to be available alone without the pulse ox, and if it still can be purchased that way, it is not excessively expensive - even if one's insurance doesn't cover it.

h) Reading the parameters from the original ASV is a bit tricky. It's not as easy as AHI and other indices. You simply want to avoid lots of wide variation activity with the Minute Vent. The new enhanced may be more helpful as it sports a few new features. However, none of us here know anyone who actually has one. Stay tuned, I asked my DME, one of the better ones out there I might add, to call the factory and ask about its availability.

Bottom line:

Get your test raw data and written reports.
Get someone else to review them.
If the local MD's won't help you, go to one of the main sleep research locations where they see many more complex cases than the average sleep MD. After all it's not really as easy as setting in number and then trying more when that doesn't work. You need the benefit of the instrumented data from the PSG study to really understand what is going on.
Don't be afraid to add external oxygen at night. That doesn't mean your husband needs to drag around an oxygen tank during the day.

Keep asking questions and don't assume all threads are created equal on this or any board.

Lubman