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Airway and diagnosis
#21
(07-30-2015, 03:33 PM)PaytonA Wrote: I also have a question and I will apologize in advance if I missed the answer earlier in the thread. What was the basis for the decision that PAP was not working for you and what pressures were used?

Best Regards,

PaytonA

Hi Payton,

My question was about airway observations in diagnosis but has been answered by my doctor. One doctor said my airway was normal but my other doctor pointed out that I was not lying down during examination.

Thanks!
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#22
(07-30-2015, 01:16 PM)Sleeprider Wrote: Paula, do you know what your auto BiPAP settings are? I have gotten pretty good relief from the kinds of flow limitations and RERA using the pressure support function, and find it much better than CPAP. I'm just curious what issues you've had with your BiPAP.


I don't know the settings but I've had them adjusted. One tech told me they were the highest she'd ever seen, like 19 and something. But, I've had them lowered and then back up again. Currently, I have to wear a chin strap very tightly to keep the air from forcing out through my mouth and that sometimes is still not enough.

I have 3 different xPAPs and at one supplier, was told I tried on every mask in the stock. I been at for years and years and have tried everything meanwhile, I can't function anymore.

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#23
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
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#24
(07-30-2015, 03:57 PM)Paula McCabe Wrote:
(07-30-2015, 01:16 PM)Sleeprider Wrote: Paula, do you know what your auto BiPAP settings are? I have gotten pretty good relief from the kinds of flow limitations and RERA using the pressure support function, and find it much better than CPAP. I'm just curious what issues you've had with your BiPAP.


I don't know the settings but I've had them adjusted. One tech told me they were the highest she'd ever seen, like 19 and something. But, I've had them lowered and then back up again. Currently, I have to wear a chin strap very tightly to keep the air from forcing out through my mouth and that sometimes is still not enough.

I have 3 different xPAPs and at one supplier, was told I tried on every mask in the stock. I been at for years and years and have tried everything meanwhile, I can't function anymore.

Well, if you ever want to try and optimize it, Sleepyhead will tell us the settings. All you'd need to do is post the daily details graph as described here. https://sleep.tnet.com/reference/tips/imgur

Your doctor is quite well known, as is his inclination towards surgical solutions. I think Storywizard has a good idea. Talking with some of his previous patients should give you a better idea of what to expect. UPPP surgery is no picnic, takes a long time to recover, and has mixed long-term success in removing the need for PAP. It sounds like you're pretty determined to move forward with the surgery option and we wish you nothing but the best.
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#25
(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.
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#26
(07-14-2015, 02:24 PM)trish6hundred Wrote: Hi Paula,
WELCOME! to the forum.!
Hang in there for more answers to your questions and much success to you.

Thanks! Wink
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#27
(07-14-2015, 02:11 PM)TyroneShoes Wrote: There is one easy answer, which is if you have the insurance or the cash on hand, you are a candidate. And that may have nothing to do with whether is is the best course of treatment for you.

My recommendation based on nothing is to save that for a last resort. XPAP is pretty effective and non-invasive. Nothing else really is.

I found some doctors willing to do surgery but some were not. After 24 years of surgeries and doctors and all the non-invasive treatments, I actually am down to last resort.

Thanks!
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#28
(07-30-2015, 05:08 PM)Sleeprider Wrote:
(07-30-2015, 03:57 PM)Paula McCabe Wrote:
(07-30-2015, 01:16 PM)Sleeprider Wrote: Paula, do you know what your auto BiPAP settings are? I have gotten pretty good relief from the kinds of flow limitations and RERA using the pressure support function, and find it much better than CPAP. I'm just curious what issues you've had with your BiPAP.


I don't know the settings but I've had them adjusted. One tech told me they were the highest she'd ever seen, like 19 and something. But, I've had them lowered and then back up again. Currently, I have to wear a chin strap very tightly to keep the air from forcing out through my mouth and that sometimes is still not enough.

I have 3 different xPAPs and at one supplier, was told I tried on every mask in the stock. I been at for years and years and have tried everything meanwhile, I can't function anymore.

Well, if you ever want to try and optimize it, Sleepyhead will tell us the settings. All you'd need to do is post the daily details graph as described here. https://sleep.tnet.com/reference/tips/imgur

Your doctor is quite well known, as is his inclination towards surgical solutions. I think Storywizard has a good idea. Talking with some of his previous patients should give you a better idea of what to expect. UPPP surgery is no picnic, takes a long time to recover, and has mixed long-term success in removing the need for PAP. It sounds like you're pretty determined to move forward with the surgery option and we wish you nothing but the best.

Yep, I've had UPPP which helped for about 5 years. I have been anticipating this surgery for 5 years, not that I wanted it but that I need it. I've been trying other options for decades but it's gotten so bad and I want to have a chance at life again. Right now I'm handicapped and it's affecting every area of my life. I've had enough.
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#29
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






















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

Cool
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#30
> I don't know the settings but I've had them adjusted. One tech told me they were the highest she'd ever seen, like 19 and something. But, I've had them lowered and then back up again. Currently, I have to wear a chin strap very tightly to keep the air from forcing out through my mouth and that sometimes is still not enough.

Just because the tech never saw a 19 before, means nothing. Fairly common machines go significantly higher than that.

At high pressures, some people need a different mask. A full face mask, for example covers your mouth so you won't leak there.

> Yep, I've had UPPP which helped for about 5 years. I have been anticipating this surgery for 5 years, not that I wanted it but that I need it. I've been trying other options for decades but it's gotten so bad and I want to have a chance at life again. Right now I'm handicapped and it's affecting every area of my life. I've had enough.

As Shastzi said, I'm not at all convinced that you need surgery. It's more likely that you found a surgeon.

> That makes sense in theory but Dr. Park, said that PAP doesn't always work and can even make things worse (I spoke w/ Dr Park since my post).

According to the patient reviews I found on Google, Dr. Park seem to be more interested in selling books and surgery. As my wife frequently says, "If you go to a barber, you're going to get a haircut".

You went to a surgeon. He wants to do surgery. It's not surprising.

Your airway isn't a mystery. If your problem is that it collapses, the right machine and mask will keep it open, however if for some reason, you're set on having your jaw sawed off and moved forward, that's certainly your choice.

I know that before doing that, I'd find a better doctor and a better DME that didn't say 19 was the highest ever seen, however if you want to do it, it's your life.

Terry
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