Note: This post may contain statements that I no longer consider true.
See: The Vivos mRNA Appliance Didn't Improve My Obstructive Sleep Apnea.
CPAP pressure remains pretty stable, and hasn’t changed much in the last 6 months. This isn’t particularly good news. My compliance remains excellent, but I think the facemask is giving me headaches so I’m going to take a break from it for a while.
I’m still finding the appliance winding itself back so I haven’t made as much progress as I would like. My provider gave me some wax to push into the screw to secure it, but that didn’t seem to help. I wind it forward every morning now to compensate.
Here are this month’s graphs:
I had a closer look at my events in OSCAR, and the Central/Clear Airway events are inflated because the CPAP machine registers events when I’m lying awake early before falling asleep in the evening or after waking in the morning. I’ve excluded these events from the graphs this month. The good news is that my CPAP machine seems to be doing a pretty good job of keeping my AHI below 5, once the false CA events are excluded.
30 Comments
Leah · December 30, 2021 at 6:58 AM
Hi Graham, thank you again for diligently sharing your experience with the device. I’m in month 6 of wearing it. Have you noticed any positive facial aesthetic changes? For instance, forward maxilla or mandible positioning?
Graham Stoney · January 19, 2022 at 1:56 PM
No I haven’t, but I can’t say I’ve been looking out for it.
Katy · December 11, 2021 at 4:44 AM
If you have nasal valve collapse too, apparently the Latera implant is supposed to work well as a noninvasive option. My ENT has had success with it, but my insurance considers it experimental still and won’t cover it. The surgical nasal valve collapse solution sounded painful. And I didn’t want to end up with negative changes in appearance, as I would have no idea how much wider my nose would end up being. The first ENT stuck q-tips up my nose and pulled my nostrils out to the side to approximate the change, and I felt like running out of the office.
Katy · December 11, 2021 at 4:20 AM
I had a balloon septoplasty and balloon turbinate reduction last year, and it helped my daytime breathing. I can now inhale and exhale exclusively through my nose when I run. I also feel better about mouth taping at night now, but I still mouth breathe when asleep unless taped (and maybe some then). The first ENT I saw said only surgery would help me, but the second said he would try less invasive procedures. Said he couldn’t fix them as thoroughly as with surgery but that it might be enough. I think my UARS is primarily a tongue space issue, but my nasal breathing has improved, at least when awake. Hope your ENT procedures make a difference! Thank you for sharing your journey!
Greg · December 9, 2021 at 5:46 AM
You ok? Waiting for December update?
Greg · November 20, 2021 at 1:25 PM
Hey, for a number of reasons I had to halt pulling the trigger. One of my reasons was that one of my wisdom teeth in upper right is making its way out… (in at least a couple sessions – 2nd session starting now) – each time causing some jaw opening obstruction clearance. Am I right to think not doing Vivos during this wisdom tooth transition was the right move?
Stefan Stolt · November 20, 2021 at 1:23 AM
Dear Grayham
Have you found the Bow facemask comfortable to wear? I have been trying a Delaire Style facemask that press on the chin with my Biobloc appliance but the pressure it puts on the chin pushes the jaw back and I can not sleep more than 5 hours with it before waking up. I am considering buying the Bow as it attach to the breast instead and would like to hear your experience with it.
Best regards, Stefan Stolt
Graham Stoney · November 20, 2021 at 1:32 PM
For me, the Bow is only practical to wear while lying down, largely on my back. When I wear it lying on my side, I can’t breathe… so I’m off to see the ENT who recommended a turbinate reduction almost 2 years ago and will go ahead if he still recommends it. I made several attempts at sleeping with the Bow (and my appliance, and CPAP) and eventually gave up and only wear it during the day. Cheers, Graham
Lisa · November 21, 2021 at 8:34 PM
Hi Graham,
I also have enlarged turbinates in one nostril but don’t think I’d risk surgery to reduce them as this can cause Empty Nose Syndrome. I’ve also heard that turbinates can enlarge with allergies then shrink back again.
Take care
Graham Stoney · November 21, 2021 at 8:39 PM
The surgeon I’m seeing is a co-author on this systematic review of empty nose syndrome published last month, so I’ll definitely ask him about it.
Clark · December 1, 2021 at 7:59 PM
I see both Prof Harvey and A/P Kalish on that list
I am hoping you are seeing Prof Harvey for a second opinion? Coincidentally, I have consulted the immunologist and the sleep focused ENT at the clinic, they all work together, highly recommended
Clark · December 1, 2021 at 7:56 PM
Lisa, ENS comes from turbinate /removal/, which has since fallen out of favour over a decade ago with the refinement of resection surgery (break bone, pivot bone to at different angle, laser to reduce soft tissue )
The “chronically inflamed from allergies” isn’t the same as hypertrophy either
If you have have an obstructed sinus and you go on to complete palate expansion, you’ll still end up mouth-breathing during sleep from the body detecting insufficient airflow intake, you’d only fix half the issue
Read more here from a top ENT both sides of the pacific
https://www.ents.com.au/turbinate-surgery.html
Douglas Toombs · December 16, 2021 at 3:57 PM
Clark — it is 100% absolutely false that ENS only happens because of turbinate removal. I would invite you to join the Facebook ENS support group that has over 2,000 members – hundreds of which were told the exact same misinformation by their ENTs … before their lives were permanently ruined.
Resection, RF, whatever – there are members in there who have had every single reduction technique done on them … who are now barely getting through life on heavy doses of antidepressants and sleeping pills because of the nightmarish “suffocation jolts” ENS patients experience as they start to transition into sleep.
TD · November 6, 2021 at 10:42 AM
I don’t think the APAP algorithm is all that trustworthy to gauge progress. I’ve been on several different pressure ranges to try to deal with aerophagia and bounces around in pressure regardless and with little effect on overall AHI.
Greg · November 20, 2021 at 1:31 PM
I hope soon to prove this without a doubt with actual data. My AHI scores are stellar right now, but if I open a higher pressure range for the max pressure – I have no doubt that the machine will start escalating there needlessly and causing issues. The reverse was definitely true (before I constrained my pressure.) Unfortunately it will have to wait a lil longer as I have some higher priority tests to run right now.
Bruce · November 6, 2021 at 1:38 AM
Graham,
Based on your posts, you’ve been using the Vivos retainers for over a year. Is the Vivos system truly effective? Do you think it will eliminate the need for CPAP and cure OSA?
Graham Stoney · November 6, 2021 at 8:22 AM
It seems to be effective for many people. I am concerned about whether it will be effective for a severe OSA case like mine though, but I thought it was worth as shot given the only viable alternative is MMA surgery. At this point I can’t say since I’m only about half way through my expected treatment time. Cheers, Graham
Enoch · November 5, 2021 at 2:46 PM
Do you have a goal for total millimeters of expansion, or do you plan to just keep advancing until you see improvements in sleep/airway metrics?
Graham Stoney · November 6, 2021 at 8:20 AM
I don’t have any particular goal for millimetres of expansion in mind, but I’ll ask my provider next time I see them since they might. Yes, I do plan to keep expanding until I see an improvement in my sleep/airway metrics. Cheers, Graham
Greg · November 5, 2021 at 1:58 AM
Hi, I have been meaning to write you. I once had lots of CA events just like you. I was able to almost entirely eliminate them by lowering and constraining the pressure range using nightly AHI score as a calibrator. This is something a sleep tech advised. The big assumption you seem to be making that the machine is doing the smart thing with a larger pressure range may be erroneous – that it will lower your pressure as it senses you need less. That is not what I found on my Resmed Autoset S9 – which might ramp up pressure based on many variables. The machine may not be as smart as you give it credit for – case in point you just discovered false CA events in this month too – not the same issue albeit but still showing non-optimal behavior. False perceptions and errors in the algorithm may cause increased pressure. Increased pressure may cause you to have more CA events. I have OSCAR data that shows my past with CA events and how they also got corrected by lowering pressure… With great AHI scores that I now have I was waiting to show you further definitive reverse proof by now changing one variable – only raising my upper pressure range which I expect will cause the machine to start ramping up pressure again needlessly despite my already good AHI, and hence giving me more pressure than I need and then also reintroducing possible CA events again. While my AHI scores are very low, I haven’t done the last part of the reverse test to further demonstrate this yet because I am running other more important tests for myself so I can sleep longer (my problem is I havent been getting consistently enough hours of sleep – only about 6 – I need 8 or 9). I felt it was necessary to show you reverse proof, despite having already forward proof, since you seemed reluctant to previously try lowering your pressure range using nightly AHI to calibrate. For all you know you may be much more along in your progress as your needed pressure may be actually much lower than you think.
Graham Stoney · November 6, 2021 at 8:16 AM
Thanks Greg, I’ll keep your feedback in mind. Cheers, Graham
Greg · November 6, 2021 at 2:49 PM
Also how is the unwinding not a defect in your device? And therefore how is Vivos not then replacing it for you? Or does it just take a long time to get a replacement? Does your provider charge you based on the length of your particular Vivos treatment?
Graham Stoney · November 11, 2021 at 6:11 PM
It possibly is a defect, unless I’ve maxxed out my genetic potential. I haven’t fully explored this, thanks for the reminder. I think a replacement probably would take a while since I’m in Australia and I don’t think Vivos fabricate the devices here (yet?). The charge is independent of treatment time. Cheers, Graham
Greg · November 14, 2021 at 4:22 AM
Vivos customer service is pretty helpful when I have called in with questions. But it might be important to report such a defect nevertheless. Are you saying that you pay a fixed price for Vivos regardless of how long it takes (18 or 24 months etc)? I am not sure the provider I am considering is offering that.
Graham Stoney · November 14, 2021 at 6:05 PM
Good point thanks Greg. Yes, I paid a fixed price regardless of how long it takes. If I need a second appliance for more expansion, I think that’s extra.
Shauna · November 4, 2021 at 1:30 PM
I am so grateful to you for taking the time to provide all of your findings and your personal experience. Thank you!
Graham Stoney · November 6, 2021 at 8:17 AM
You’re welcome Shauna. I’m glad you’re finding it helpful. Cheers, Graham
Erik · November 3, 2021 at 3:27 PM
Any update on the CFS front, how are you overall energy levels lately..
Cheers
Erik
Casandra · November 2, 2021 at 3:37 AM
So has your provider given you the regular face mask that goes with the mrna. I remember you said that they wanted you to not use the mask until you expanded. The regular mask might work better for sleeping but I know you also have the cpap mask to put on your face so who knows
Graham Stoney · November 2, 2021 at 7:17 AM
No, I just have the Bow I bought myself.