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Airway and diagnosis
#31
Since your problem is the sustained hypoxemia not solely supported by your low AHI level, have you had the follow up cardiac and pulminary evaluation as recommended by your sleep study report?

It would be so empowering for you to examine the data from your Auto BiPAP. You would be able to see what is going on during every breath you take. After all you have subjected yourself to I would think you would want to do this free, noninvasive, in-home evaluation of data before consenting to radical surgery.


if you can't decide then you don't have enough data.
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#32
(07-30-2015, 06:24 PM)Paula McCabe Wrote:
(07-30-2015, 04:45 PM)storywizard Wrote: Hi Paula, welcome to the forum..

your two posts have stirred a question in my mind that I was not going to post, but having read these threads here goes:

Have you talked in person with anyone who has had this surgery? How was it for them, did it work...

I am in awe that you would consider such radical surgery,
I wish you well with it and hope that if you go through with it it will provide relief for you...

sincerely,

Storywizard

I've read several patient blogs, watched a few Youtube patient videos and have requested to speak to two former MMA patients of my doctor. My sister has also had the surgery.

The reason I am opting for this surgery is to increase my quality of my life and life expectancy. I'm developing complications from the UARS and no longer able to function.

Thanks for the reply Paula...

I hope the surgery goes well....I wish you a speedy recovery and a long healthy life..

sincerely,

Storywizard

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#33
(07-31-2015, 07:43 AM)Shastzi Wrote: Stories like this make me bristle.
First of all there is nothing mysterious about apnea.
It is simple enough for the lay person to understand.
The write up is in wikipedia. That really is all there is to it.
Your airway is just a flexible squishy pipe that is prone to collapse in some folks more than others.

I get the strong feeling that your current Dr. is basically trying to wring out your wallet.
By convincing you that there is high complexity involved that you could NOT possible understand is total bunk, designed to
keep you enslaved to his wallet siphoning.
The sooner you post some of your sleephead results here the sooner some of the doctors here might get a chance to look at it.
The people get to look at your data the better the chance that you'll get on the right track.

I would be a real travesty if you went in for more expensive possibly useless surgery when all you might need is a few simple adjustments to
your CPAP machine.


All in all I wish you well and I hope you find the path that gets you some relief.

Sleep-well


Hi,

My lead doctor is not performing the surgery. I had another surgeon who does not perform the surgery, advise me to have it.

The reason it is a mystery is that for some people who don't test high for apnea, their doctors don't know what to do. I've been sent to sleep medicine doctors, therapists, psychiatrists, neurologists, allergists, pulmonologists, told to go home, etc.

Not only this but the diagnostics don't tell the doctor where and how the apnea is occurring and which treatment option is the best. It's also a mystery because I have never been too sure how much any doctor really knows, even those who are board certified and those who are in world renowned practices. You would think that any doctor doing an in office endoscopy would lie the patient on his/her back but I don't know that anyone has ever done that. And they religiously cannot see beyond the sleep study results in making a diagnosis, with apparently little notion that people don't sleep well in labs or that patients with low threshold of arousal or less than 10 second interruptions in breathing are not going to have high apnea scores, etc.

As a matter of fact, the whole model of progression in surgery that I was presented with at the time of my first surgery in 1999 was moving from the least invasive to the most invasive. That alone should confirm that fact that the doctors have no idea where and how the apnea is occurring.

I've spent 24 years seeing nearly 100 doctors and it took me 19 years to finally have a sleep endoscopy to reveal my airway collapse (in two places). PSG and scores of doctors said I didn't have an airway problem.

I've had the settings on xPAP so high that it was impossible to seal the mask and still it didn't give me relief.




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#34
(07-31-2015, 10:42 AM)MobileBasset Wrote: Since your problem is the sustained hypoxemia not solely supported by your low AHI level, have you had the follow up cardiac and pulminary evaluation as recommended by your sleep study report?

It would be so empowering for you to examine the data from your Auto BiPAP. You would be able to see what is going on during every breath you take. After all you have subjected yourself to I would think you would want to do this free, noninvasive, in-home evaluation of data before consenting to radical surgery.

Thank you! I'll have my doctor take a look at that cardiac evaluation recommendation.

I tried to attached one of my sleepyhead readings. I have no idea if it worked. I choose the file and hit add attachment then the screen blinks and chosen file area no longer shows the file and there is no confirmation of success, no error msg.
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#35

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
"With ordinary talent and extraordinary perseverance, all things are attainable." - Thomas Foxwell Buxton

Cool
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#36
Here is a tutorial on another way to attach charts. https://sleep.tnet.com/reference/tips/imgur

Attachment should have worked, but this is better.
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#37
[Image: X8TChoTl.jpg]

[Image: QzePMXsl.jpg]

These are supposed to be links to my Sleepyhead data at Imgur.
[Image: QzePMXsl.jpg]
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#38
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.
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#39
(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
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#40
The first test that you posted was a home test. And right on the bottom of that is a recommendation for a full sleep test in a lab (polysomnography). The home test is valuable, but only as an initial diagnosis. It is sort of a triage to see where to go next.

If you have all of these different xPAP machines and masks, was there not a PSG to support them being prescribed for you?

I really feel your pain, and we all wish the best for you. Please don't take this wrong, but I think part of the problem is that you do not understand or fail to comprehend the information right in front of you. Just one example is that your home test shows ZERO central or CA/clear airway events, ZERO OSA events, and the great bulk of the events are hypopneas. That is quite prominent and makes me puzzle over why you have questions about whether you have CAs or not, when the answer is crystal clear, and right there in black and white. Even as a layman, the results of this test mean you should probably get a PSG test. It is unclear if you have ever even had that, unless the really blurry post with lettering too tiny to read might have been that.

Unfortunately, those who have trouble navigating the findings or understanding what the tests are telling them are prime candidates for quacks who might prey on them and their desperate state. Could that be happening here? And if he knows how far you came to see him, your desperation is palpable and evident, which makes his sales job pretty easy. You're a "prime candidate" all right. A prime candidate to be scammed.

I am going to ask this one more time, and then I'm out. If the issue is your airway collapsing, how is MMA going to help? If the problem is not OSA, how is the airway collapsing? A collapsing airway is the textbook definition of what causes OSA, yet your study has no OSA events in it; they are all hypopneas. Your airway is either collapsing or it isn't, but if it is, there will definitely be OSA events to support that diagnosis, and you had none in your home study. So how do we interpret that?

You also seem to not be listening to anything any of us have said to you. Why is that? There is a saying that the level of a person's PERCEIVED expertise is directly proportional to how far they have to travel to come help you. I think that probably applies to making that trip yourself, as well. And it is a PERCEPTION. Not a validation of expertise, at all. And actually, a misperception. IOW, how far you had to go means nothing as far as how expert he might be. I hope you are not only listening to that one doc because you assume he knows what he is talking about simply because you had to take a long plane ride to get to him. The reputation alone should be setting off alarm bells.

I think it is dangerous and even foolish to have an operation when there is not even an understanding by the potential patient of what the physical change to your body is that will supposedly make everything better, and how exactly that will be an improvement. Please wake up and smell the propane.

I am also puzzled that you are so desperate for help to be highly motivated to fly 3000 miles to see a specialist (when LA is full of qualified specialists), yet you seem completely unmotivated to understand the underpinnings of this procedure, or even understand the results of your sleep study, or to listen to what everyone is saying to you. You are way down the rabbit hole here, and we are trying desperately to reach you, but you are frustratingly unreachable. Its like watching helplessly from the shore as someone drowns.

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.

Peace and love
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