Finally found through DISE why cpap/bipap/ASV was never going to work for me.

[logart89]

Well, long story short, i did a DISE, they found out that i have floppy epiglottis (FE) that was causing me my UARS symptoms, in supine position, the airway completely collapses, while in DISE they put me a CPAP, they tried 9, 10, 12 and 12 cm H20, the more pressure the more my airways collapsed, while in dise they put me a mandibular advancement device (MAD) at 80% mandibular advancement and finally the airway in supine position didn't completely collapse like before due to the FE, and side sleeping also improve. 

I uploaded the video on youtube of my DISE as a private video, if anyone is interested in seeing it, send me a PM. 

The cost of the DISE and the MAD, was around $1000 here in Mexico. 

I still have surgeries options if i don't adapt to the MAD but i least i know finally who is the villain in my airways, the FE.
DISE is useful for UARS patients, do it, it might be prevent you to buy a unnecessary expensive machine like i did.

[Sleeprider]

If palatial prolapse is the issue then the Alaxo Stent might be a solution. Not much detail in the hat you posted to form an opinion. There is not much we haven’t seen, but your ASV is for central and complex apnea, and it seems your issues may not be addressed by that.

[logart89]

Nope, I've tried APAP and ASV none would work, in my DISE it was showed that the airway collapses at the epiglottis way more with pressurized air, they put me on a CPAP with 9, 10 12 and 13 cm H20, in the video i got from them, the more pressure the worst.



CPAP is not for everyone with UARS symptoms, at least not if your UARS issue is in the epiglottis. 

Then they place me a MAD while in DISE and my epiglottis didn't collapse in supine sleep position, supine position its where my problem is mostly, without MAD my oxygen levels dropped to less than 77% (supine), they put me MAD on while in supine and my oxygen levels at 94%. 

Without MAD supine position 77% oxygen levels, epiglottis collapsed:



With MAD 94% oxygen levels and epiglottis open and stable.....MAD in Spanish is SAM:



If you have UARS i recommend doing a DISE before buying expensive equipment like CPAP.

[ppluissz]

Hello , I am located in Mexico too. Where did you get that DISE study.

Thanks

[logart89]

Monterrey with Dr. Rodolfo Lugo Saldaña, I went to many sleep specialists, including in Mexico city, not only in Monterrey, and they all pointed me out to the same direction, with Dr Lugo. They are all a team of doctors apparently, or they all appear to be all interconnected with Lugo.

[Sleeprider]

As I said before, the Alaxo Stent is a physical stent to hold the airway open during sleep. There a several current threads by members using the AlaxoStent. Do a search and see if you think it might be helpful. https://www.apneaboard.com/forums/Thread...A-Approved

[Uphold9887]

I've been following your threads as I have some suspicion I may be dealing with similar issues. I hope you are finding some relief these days. Any further updates to share? How are things going?

[logart89]

Yes, I found lots of relief and deep/REM sleep with MAD, objectively and subjectively, My sleep quality increased, and I finally feel rested. I encourage everyone with UARS to do a DISE BEFORE buying expensive equipment. Like I already said, it turned out CPAP was collapsing my airways, and my floppy epiglottis, which is the soft tissue that was causing my UARS, is treated way more effectively with MAD. But this is my individual case, and as my DISE study showed, your DISE study can show that CPAP is better for you.
 
In a DISE study, they should try CPAP on you with different ch2o pressure levels to see how your airways behave, They should also try you on a MAD. This is why it is very important for the orthodontist to be present in the DISE study. At the end of the DISE study, they will put all your viable options in front of you.
 
MAD is way more comfortable to wear than a CPAP mask, and I'm using the lowest level of mandibular advancement and a daily guard for 1 hour to return any tooth movement that might have moved during the night to its original place.
 
My floppy epiglottis problem only appears when I'm sleeping in the supine position (face up). When I'm sleeping on my side, my epiglottis does not collapse. It's just that when, in the middle of the night, unconsciously (3 AM when I'm in REM sleep), I move face up, that is when my epiglottis collapses and I wake up with a high heart rate. That is no longer happening to me with MAD. So the therapy for me is positional therapy + MAD to optimize sleep.   
 
I was also able to completely discontinue benzodiazepines, which also increased my deep/REM sleep. It was the damn epiglottis closing in the middle of the night, that was my problem, I know MAD is not very popular here in this forum and that CPAP is the "standard", but that was not true for my particular case, Do a DISE study, Don't rush into buying equipment that you might not need. That's my advice.

[Uphold9887]

Thank you for your detailed response. I have found a clinic a couple hours away from me that offers DISE studies. It is rather expensive, and I do not know whether they test with a MAD or not.

I have a disc problem with my TMJ (jaw joint) that I believe was caused or exacerbated by wearing a full face CPAP mask. As a result , I was advised by an oral surgeon that a MAD is not a good idea for  me even though my dentist had recommended it. I think it could still be worth considering , should the DISE study reveal I have a similar condition as yours.

Right now I must wait longer to see a new sleep doctor before I can discuss the DISE study (Canada is quite slow for specialists) so in the meantime I will continue to struggle. But I think your story has convinced me that a DISE study is my next step. 

Thanks again

[logart89]

I would tell you to take a flight to Monterrey, Nuevo Leon, Mexico, and make the dise Study with my dr, for sure he is the best in Mexico at detecting UARS/OSA and he takes his orthodontist with him when doing a DISE if you ask him. His name is Dr Rodolfo Lugo Saldaña. HE might need to do a sleep study on you, Maybe a WatchPat or something, he doesn't trust the sleep studies of other people he doesn't know I think.


The price i paid was around 1000 dollars for the DISE study, that included the MAD device cost and everything. That's the thing with Mexico medicine, and that's why many US citizens travels to Mexico, the drs here are GOOD and is relatively cheap.