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Airway and diagnosis
#41
(08-01-2015, 01:51 AM)TyroneShoes Wrote: Please do this for us, and for yourself; send DocWils a PM and ask him to read your threads. And then LISTEN TO WHAT HE HAS TO SAY.

Hi Paula,

DocWils is not a sleep specialist and is too wise to attempt to do something inappropriate, like dispensing medical advice to someone who is not his own patient. He could warn you that MMA has very serious risks and has limited success in curing UARS and should be considered only as a last resort, but I suspect you have already heard or read this, and I also suspect that, in your view, it is now about time for treatments of last resort.

However, in my view, it seems you have not received competent medical help from those who have been leading your BiPAP treatment, and there is still a significant chance that improving the settings on your current machine will be able to greatly improve the effectiveness of your BiPAP treatment.

I think it would be understandable for Dr Park to assume you have been receiving competent (but, unfortunately, unsuccessful) care from those who have been leading your BiPAP therapy (after all, supposedly PAP therapy is their specialty, not his) and that therefore it may now be appropriate to try MMA as a last resort.

But based on the data you posted, and also based on how poorly they have informed you about (or involved you in) your BiPAP treatment, I suspect those who have been leading your BiPAP treatment have not understood that the optimal treatment for UARS is not more pressure, but more Pressure Support.

"Pressure Support" is a medical term which means the amount by which the pressure is boosted during inhalation in order to compensate for upper airway resistance.

The data you posted shows that in 2013 the Pressure Support (PS) being used was about 3. In other words, the pressure during inhalation (IPAP) was 3 higher than the pressure during exhalation (EPAP).

Like Sleeprider, I think the PS of 3 was clearly too low. In the sleep report which you posted first, I think it was clear that Flow Limitation (the primary cause of UARS) was a major problem. In the Encore data which you posted your sleep was clearly very interrupted/fragmented, and, also, from the things you have told us, you were and still are suffering from lack of deep restorative sleep. A higher PS would be expected to help reduce these problems.

Some patients with UARS do best with PS set to 6 or higher. I think the main limiting factors for how much PS can be used are:

(1) Is there an excessive amount of Clear Airway (CA) apneas or Periodic Breathing (PB) occurring, which would preclude raising PS higher? The data in 2013 shows these were insignificant at that time, and, for most patients, raising the amount of PS causes no problems and successfully treats UARS, but in a minority of patients if the PS is raised too high for their central nervous system (CNS) to get used to, the number of CA apneas may become significant, like higher than 2 or 3 per hour. If the PS needs to be fairly high to treat/prevent UARS but the high PS seems to be causing a clearly excessive increase in PB or CA, such as a CA in excess of 5, then an Adaptive Servo Ventilator (ASV) class of BiPAP machine (which would be able to treat both central apneas and obstructive apneas/hypopneas/UARS) would usually be covered by insurance.

(2) Is aerophagia occurring, which is an excessive and bothersome amount of air being swallowed? You have not mentioned this as occurring, but in some cases it can limit the amount of pressure or the amount of Pressure Support which can be used.

(3) Is some other problem occurring which would preclude having PS set high enough to successfully treat/prevent UARS?

If you will post more recent data from SleepyHead I'm sure forum members would be happy to comment and provide suggestions.

But one thing already seems clear. If your PS is still 3, it would be important to gradually raise PS to see whether higher PS will solve the UARS symptoms without introducing new problems. For example, perhaps you could raise the Min PS setting by 1 each week or so, keeping the Max PS setting 2 or more higher than the Min PS, and watch the SleepyHead data to see what it is reporting.

Please don't give up on BiPAP therapy too soon.

Take care,
--- Vaughn
Membership in the Advisory Member group should not be understood as in any way implying medical expertise or qualification for advising Sleep Apnea patients concerning their treatment. The Advisory Member group provides advice and suggestions to Apnea Board administrators and staff on matters concerning Apnea Board operation and administrative policies - not on matters concerning treatment for Sleep Apnea. I think it is now too late to change the name of the group but I think Voting Member group would perhaps have been a more descriptive name for the group.
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#42
(07-31-2015, 10:16 PM)Sleeprider Wrote: Hey, we have Encore data! It's from 2013, but better than nothing.

It's not very clear, but this shows your sleep is very fragmented, your average 90% pressure is only 5.4 EPAP and 8.3 IPAP which is very low pressure. Your apnea events are predominately what I'd expect with obstructive sleep apnea, with plenty of flow limitations, Hypopnea, OA and a few CA events. Overall AHI is not bad, but if you do have UARS you need more pressure support to properly ventilate and overcome the flow limitations and RERA.

I'll tell you right now your pressures are not optimal, and the minimum EPAP needs to be higher and a minimum pressure support of 4.0 put in. . Your max settings might be okay, but you never reach them. Whoever said anything about 19 cm didn't have a clue. Your sleep architecture is terrible, and no doubt you feel exhausted.

You need competent coaching on setting up this machine, and you're clearly not getting it. You also need to follow the tutorial in the link I provided above to post current Sleepyhead data. These charts are a mess and hard to read.


Thank you. I don't know what all that means except to say that it shows my sleep is a problem cause by airway issues and that the machine should be optimized. I think when I have asked for help from the technician, she said that she cannot do anything outside a doctor's orders. And from what others have said, finding a doctor who understands the settings may be difficult.

I'm not a mechanical or technical person. I followed the upload instructions the best I could. I don't know why the studies are a mess other than one is a scan of a printed copy.

Lately I haven't been able to sleep with XPAP for more than a few disruptive hours. I think someone posted some sleepyhead instructions and I will look at that and try to post some more data but I don't know how to make in any better than what was already posted. BTW, my sleep study is posted here too and it says I have borderline apnea. This is all too much for me. I need a doctor who knows all this but it seems they don't exist. Dr Park is the only one I ever found but he is on the other side of the country.
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#43
What you can post is some recent data. What you posted prior was from 2013.

Sleepyhead will tell us what the machine is set at, and there are knowledgeable people on this forum that use the same type of machine and will be able to help you optimize the settings, if that's what you really want.



OpalRose
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#44
(07-31-2015, 10:44 PM)storywizard Wrote:
(07-31-2015, 10:16 PM)Sleeprider Wrote: Hey, we have Encore data! It's from 2013, but better than nothing.

It's not very clear, but this shows your sleep is very fragmented, your average 90% pressure is only 5.4 EPAP and 8.3 IPAP which is very low pressure. Your apnea events are predominately what I'd expect with obstructive sleep apnea, with plenty of flow limitations, Hypopnea, OA and a few CA events. Overall AHI is not bad, but if you do have UARS you need more pressure support to properly ventilate and overcome the flow limitations and RERA.

I'll tell you right now your pressures are not optimal, and the minimum EPAP needs to be higher and a minimum pressure support of 4.0 put in. . Your max settings might be okay, but you never reach them. Whoever said anything about 19 cm didn't have a clue. Your sleep architecture is terrible, and no doubt you feel exhausted.

You need competent coaching on setting up this machine, and you're clearly not getting it. You also need to follow the tutorial in the link I provided above to post current Sleepyhead data. These charts are a mess and hard to read.

Difficult situation...Paula is in dire straights, desperate to feel better, we are throwing stuff at her hoping to help. As she says she is barely functioning, what is the wise thing to do here? How can we best help in this situation?

Paula: What is the time line to surgery?
What would be the most benefit to you from the posters here ? Helping you with your machine..or something else

sincerely
Storywizard


Hi and thank your for understanding. I'd like people to understand I don't want to try to become a doctor; for one, I don't have the aptitude; secondly, I don't know how sizable the body of learning is and therefore cannot assess the cost and time to cover it; and thridly, the Dunning-Kruger effect...or colloquially, "You don't know what you don't know". I would not deny that some here have benefited from their research. I'm just saying I don't know if it will, I'm not good at it and I don't know if I can afford it. I've had the thing turned up so high that every mask in the store would not hold the seal and for the periods that I could keep it on my face, it was awful.

I will try to some sleepyhead data but I am not allowed to adjust the machine and don't know and can't in good conscience do it based on the advice of people trying to help me here unless I know their credentials. So it seems the best thing for me to do is find a doctor in Los Angeles who can help me. I don't know what else to do.
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#45
why would a patient have to ask their doc about a cardiac eval, especially before surgery? There are some members here that had radical surgeries and most will tell you that it did NOT keep them from using a machine so if that is your expectation, you may want to talk with people that had this surgery that were NOT patients of your doctor.
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#46
(07-31-2015, 05:39 PM)Shastzi Wrote: I am still a bit dubious about the mandibular surgery.
#1. research papers show that success rates are low. (Less than 33%)
#2. From the sound of it the doctor is taking the position of: "Oh well we have tried everything else, lets try this now" (more disturbing )



This smacks of 'The clueless car mechanic mentality'.
"Lets change out all the parts and eventually we'll replace the bad one this way!"

If he is not 100% sure this will fix the problem then the answer should be NO.

This is a dangerous game he is playing with your life.

Doctors often send each other business this way by referral. They might be good golfing buddies.

Then there is risk / benefit:
Keep in mind that if you do go with the surgery and something does go wrong you might not ever be able to eat normally again.

Call me a skeptic at this point.

I digress though.
I'm sure someone here can help you get your SleepyHead chart posted.
I hope that will clear up a lot of things.

Hang in there and best of luck!

Sleep-well

#2 I had a sleep endoscopy which showed my airway collapsing so that is the basis for the surgery. But, the scenario that you suggest probably happens more often than not. I think that it is rare that they can identify exactly how the apnea is occurring and so they recommend CPAP and this is where I started in 1991. I don't think there is ever a time when they know the surgery will be a success unless it's tracheostomy.

My surgeon is Los Angeles. Dr. Park is in NY. I saw Dr. Park and he referred me to no one. I found the local doctors on my own. I have to also consider the risk to my health from not having the surgery, which are mounting. I appreciate your comments but you only have bits of information on my case which is one reason why I was not attempting to get medical help here. I will say however, if nothing else, people have made me wonder about changing the settings on XPAP but, the more I think about it, the more I realize that I've already done a lot of that. I've never come even close to getting restorative sleep with it.
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#47
this forum doesn't give medical help. it is for patient empowerment and we can try and help with your vpap issues which several people have said they suspect needs adjustments. it is sad that those respiratory therapists that work for DME's don't pay attention to things as they should. If you need settings adjusted, then ask your doctor for help with that. You can also adjust your own settings but I suspect that you don't really understand how your machine works and that is why you haven't adjusted it. Many members have tried really hard to help you and it appears you are set on surgery. If that is the case, then I hope it is successful. Those that have this surgery, most still have to use a machine. Very rarely does it "cure" OSA. I would suggest that you post current data for a night or two of recent sleep. If you have fragmented sleep, there are things that you can do to help with that. IMHO, you are not to the point of considering the last resort treatment of surgical procedures but that is up to you. I hope that you are not disappointed when you still have issues that require medical intervention after you heal from this very radical and drastic surgery.

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#48
(08-01-2015, 05:19 AM)vsheline Wrote:
(08-01-2015, 01:51 AM)TyroneShoes Wrote: Please do this for us, and for yourself; send DocWils a PM and ask him to read your threads. And then LISTEN TO WHAT HE HAS TO SAY.

Hi Paula,

DocWils is not a sleep specialist and is too wise to attempt to do something inappropriate, like dispensing medical advice to someone who is not his own patient. He could warn you that MMA has very serious risks and has limited success in curing UARS and should be considered only as a last resort, but I suspect you have already heard or read this, and I also suspect that, in your view, it is now about time for treatments of last resort.

However, in my view, it seems you have not received competent medical help from those who have been leading your BiPAP treatment, and there is still a significant chance that improving the settings on your current machine will be able to greatly improve the effectiveness of your BiPAP treatment.

I think it would be understandable for Dr Park to assume you have been receiving competent (but, unfortunately, unsuccessful) care from those who have been leading your BiPAP therapy (after all, supposedly PAP therapy is their specialty, not his) and that therefore it may now be appropriate to try MMA as a last resort.

But based on the data you posted, and also based on how poorly they have informed you about (or involved you in) your BiPAP treatment, I suspect those who have been leading your BiPAP treatment have not understood that the optimal treatment for UARS is not more pressure, but more Pressure Support.

"Pressure Support" is a medical term which means the amount by which the pressure is boosted during inhalation in order to compensate for upper airway resistance.

The data you posted shows that in 2013 the Pressure Support (PS) being used was about 3. In other words, the pressure during inhalation (IPAP) was 3 higher than the pressure during exhalation (EPAP).

Like Sleeprider, I think the PS of 3 was clearly too low. In the sleep report which you posted first, I think it was clear that Flow Limitation (the primary cause of UARS) was a major problem. In the Encore data which you posted your sleep was clearly very interrupted/fragmented, and, also, from the things you have told us, you were and still are suffering from lack of deep restorative sleep. A higher PS would be expected to help reduce these problems.

Some patients with UARS do best with PS set to 6 or higher. I think the main limiting factors for how much PS can be used are:

(1) Is there an excessive amount of Clear Airway (CA) apneas or Periodic Breathing (PB) occurring, which would preclude raising PS higher? The data in 2013 shows these were insignificant at that time, and, for most patients, raising the amount of PS causes no problems and successfully treats UARS, but in a minority of patients if the PS is raised too high for their central nervous system (CNS) to get used to, the number of CA apneas may become significant, like higher than 2 or 3 per hour. If the PS needs to be fairly high to treat/prevent UARS but the high PS seems to be causing a clearly excessive increase in PB or CA, such as a CA in excess of 5, then an Adaptive Servo Ventilator (ASV) class of BiPAP machine (which would be able to treat both central apneas and obstructive apneas/hypopneas/UARS) would usually be covered by insurance.

(2) Is aerophagia occurring, which is an excessive and bothersome amount of air being swallowed? You have not mentioned this as occurring, but in some cases it can limit the amount of pressure or the amount of Pressure Support which can be used.

(3) Is some other problem occurring which would preclude having PS set high enough to successfully treat/prevent UARS?

If you will post more recent data from SleepyHead I'm sure forum members would be happy to comment and provide suggestions.

But one thing already seems clear. If your PS is still 3, it would be important to gradually raise PS to see whether higher PS will solve the UARS symptoms without introducing new problems. For example, perhaps you could raise PS by 1 each week or so, and watch the SleepyHead data to see what it is reporting.

Please don't give up on BiPAP therapy too soon.

Take care,
--- Vaughn


Thank you for a very thoughtful, calm response. I'd really like to find a doctor who understands all this and can manage my treatment.
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#49
I don't know how to use sleepyhead.
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#50
(08-01-2015, 09:11 PM)me50 Wrote: this forum doesn't give medical help. it is for patient empowerment and we can try and help with your vpap issues which several people have said they suspect needs adjustments. it is sad that those respiratory therapists that work for DME's don't pay attention to things as they should. If you need settings adjusted, then ask your doctor for help with that. You can also adjust your own settings but I suspect that you don't really understand how your machine works and that is why you haven't adjusted it. Many members have tried really hard to help you and it appears you are set on surgery. If that is the case, then I hope it is successful. Those that have this surgery, most still have to use a machine. Very rarely does it "cure" OSA. I would suggest that you post current data for a night or two of recent sleep. If you have fragmented sleep, there are things that you can do to help with that. IMHO, you are not to the point of considering the last resort treatment of surgical procedures but that is up to you. I hope that you are not disappointed when you still have issues that require medical intervention after you heal from this very radical and drastic surgery.


It was never my intention to seek medical advice here, other than to ask two questions in principle and try to add some context so that people could better understand the question but still, only answer in principle. Surprisingly, I've gotten lots of medical advice and warnings, etc. Obviously, I don't know the credentials of anyone here and don't know enough to evaluate the advice so, I've just tried to glean what I can from it but, it's gotten to be overwhelming.
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