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[Treatment] Best treatment modality for my difficult to treat UARS
#1
Exclaimation 
Hello,
I am seeking some advice on how to proceed with my, seemingly complex, case.

2011 - Sleep study indicating RDI of 2 during NREM, rising to 17 per hour briefly during REM, primarily UARS (RERA) events.
2014 - Sleep study indicating highly fragmented sleep, delayed REM onset of 5.5 hours, with only 3.1% REM sleep. This sleep lab was not as advanced and I question if it observed for RERA.


I have since seen my ENT surgeon, who after performing a fiberoptic laryngoscopy came to the conclusion regarding my anatomy that
a) I have a 2mm slit either side of my uvula, with my uvula persistently contacting against the back of my throat
b) My tongue base opening is also approximately 2mm on resting. My tongue base does not advance when extending my jaw or tongue.

I have spent 1300 run hours on my S9 Autoset, having never slept with it for more than 30 minutes, but typically being unable to sleep longer than 10 at a time, if I can fall asleep with it. I have tried a myriad of setting combinations and masks over three years. I am unable to tolerate either straight or auto CPAP. I fall asleep within 10 minutes without the CPAP. I believe that I spend 2+ hours each morning in REM rebound, however I have never been allowed to sleep that long, or have slept well enough in a lab, to capture it. Sleep as Android shows that every 5-10 minutes, at most 15, throughout the entire night I turn or wrestle with the pillow, and the audio is typically always accompanied by a sigh or small ghasp. I thought that I slept solidly 'like a tank', but apparently not.


My surgeon has scheduled me for a sleep deprived EEG on the recommendation of a neurology report, which displays two events of activity suspicious for spike and wave during my last sleep study.


If the EEG comes back clear, my surgeon would like to perform two procedures, with a 2 month gap between each.
1. Lingual Tonsillectomy combined with RF tongue base channelling
2. Modified UPPP, combined with palatal advancement. My palate is too narrow in both dimensions, that I would lose all of my soft palate in order to create any opening, thus the palatal advancement to minimise the amount of soft palate reduction.

Keep in mind that I have seen two ENTs who both essentially said the same thing with regards to my airway anatomy, and two sleep doctors who both agree that my excessive sleep fragmentation likely has a structural cause.

I would like to try ASV to see if I have any success sleeping with it, and achieving results. Dr Krakow and Dr Park indicate that patients with UARS often only tolerate BiPAP or in some cases ASV. Would this be a wise move prior to having surgery? I have a wait of at least 6 weeks until I can have the surgery booked, due to waiting for the EEG. The surgery may then be another 3-4 weeks after this date. The ASV will cost me $1,800AUD, for which I am trying to figure out how to source the funds (currently unemployed due to this insidious condition). The surgery would cost $500+.

I can make a copy of my sleep study available if it will assist anybody in giving advice.

Perhaps for one night in my life I'll be able to achieve a restful sleep?.

Thanks for reading.
Sleep-Seeker
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#2
Hi Sleep-Seeker,
WELCOME! to the forum.!
I think it would be better to try all things CPAP before surgery.
Hang in there for more suggestions and answers to your questions.
Much success to you.
trish6hundred
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